Living with and beyond cancer: The improvement story so far - NHS ...

CANCER 

NHS 

NHS Improvement 

DIAGNOSTICS 

HEART 

LUNG 

STROKE 

Adult Cancer Survivorship Initiative 

Living with and beyond cancer: 

The improvement story so far

Primary 

Care 

Assessment 

National Cancer Survivorship Pathway 

Symptoms 

Inpatients 

Screening 

Ambulatory 

Care 

Investigations 

Straight 

to Test 

MDT 

Decision 

to Treat 

Survivorship 

Assessment 

Care Plan 

Referral Diagnosis 

Primary 

Treatment 

(Living 

document 

setting out 

aftercare) 

Primary 

Care 

National Awareness and Early 

Diagnosis Initiative (NAEDI) 

Inpatients 

Survivorship - Living with 

and Beyond Cancer 

Patient Chooses 

Not to be Treated 

Remission 

Recurrence 

Active/Advanced 

Disease 

Remains 

Well 

Consequences 

of Treatment 

End of Life 

Care 

2nd/ 

Subsequent 

Treatments

Living with and beyond cancer: The improvement story so far | 3 

Foreword 

S 

ome cancers are born chronic, some cancers become chronic, 

some cancer patients have chronic illness thrust upon them by treatment 

and some are not chronic at all 

(apologies to W Shakespeare) 

The cancer landscape has changed but 

the public and professional view is 

lagging behind. Cancer is seen in simple 

terms - completely cured and ‘back to 

normal’ or incurable disease and 

‘terminal’. Reality is different. Some still 

die within a year of diagnosis. Others 

with incurable cancers live years with 

their illness or experience treatment 

consequences directly after cancer 

treatment or years later, with similar 

illness patterns to a long term condition. 

National Cancer Survivorship Initiative (NCSI) five key shifts 

• a cultural and attitudinal shift to focus on health and recovery; 

• a shift towards improving information; 

• a shift towards assessment and care planning; 

• to shift towards providing tailored care pathways based on risk of 

future problems associated with the type of cancer, the type of 

treatment and the particular circumstances of the individual; 

• a shift towards improved measurement through patient 

reported outcome and experience measures. 

Traditionally, the focus of cancer services 

is on cancer as an acute illness treated 

and followed up by hospitals. There are 

already two million patients in the UK 

living with a diagnosis of cancer and this 

is expected to rise by around 3% a year. 

Recent work suggests that up to 70% 

of recurrence for common cancers could 

be detected by patients noticing 

symptoms themselves with or without 

automated test surveillance. Many 

patients have indicated that they would 

prefer this type of self management as 

long as there is a fast, reliable route 

back to the specialist team if needed. 

Evidence is also emerging that 

opportunities are being missed for 

secondary prevention of new primary 

cancers and other long term conditions, 

which are more common in cancer 

survivors. Given the above, current 

follow up practice will become 

unsustainable and no longer fit for 

purpose. There is already evidence that 

it does not adequately address the 

needs of patients. Where appropriate, 

moving from traditional, hospital based 

follow up visits - to alternative models 

offers many benefits to the quality, 

safety and effectiveness of care. 

The test communities within this 

programme are testing a number of 

approaches that 31 reflect the National 

Cancer Survivorship Initiative (NCSI) 

five key shifts 

The cancer story continues to develop 

with many more people living well with 

cancer whether truly cured or not. 

Measures to support recovery and 

transition to self management need to 

go hand in hand with the development 

of the new anticancer treatments (drugs, 

surgery or radiotherapy) that will increase 

life expectancy and quality for the 

individual. The focus of the National 

Cancer Survivorship Initiative is living 

with and beyond cancer. 

Professor Jane Maher 

Dr Alastair Smith 

National Clinical Leads, 

NHS Improvement

4 | Living with and beyond cancer: The improvement story so far 

Introduction 

The purpose of this document is to give 

‘the story so far’ and includes the work 

that NHS Improvement, through the 

cancer adult survivorship improvement 

team, has been undertaking on behalf of 

the National Cancer Survivorship Initiative 

(NCSI). The main focus is to present 

improvement stories from the test 

communities who are piloting elements of 

care and support to inform potential new 

models of care. The learning and 

improvement stories from the assessment 

and care planning test sites will be 

included in the final report of the pilot 

phase of testing in the winter. 

It is necessary to understand the context 

and baseline work that has been 

happening prior to and during the testing 

work and the flexibility that has been 

required to respond to the challenges 

facing an ever changing NHS. Traditionally 

cancer services have focussed on cancer as 

an acute illness with the emphasis post 

treatment on surveillance and monitoring 

for further disease or recurrence for a 

period, usually up to five years. Primary 

care providers have therefore seen cancer 

care as the province of specialists, at least 

until ‘discharged’ from secondary or 

tertiary care. There is increasing debate 

regarding traditional follow up in the 

outpatient setting and whether it meets 

patients’ needs following cancer 

treatment, especially for those who 

experience problems more than five years 

post treatment. There is a suggestion that 

70% of people living with and beyond 

cancer could self manage their symptoms 

with support, information and access back 

in to the ‘system’ should they need it (see 

the suggested model of care pathway on 

page 56). 

NHS Improvement has been supporting 

the National Cancer Survivorship Initiative 

(NCSI), working with clinical teams and 

patients to better understand the current 

service and the potential for the future: 

• The 2007 survey explored the views of 

3,000 participants who included 

specialists from hospital care, 

professionals from primary care and 

patients. The objective of the survey was 

to find out the perceptions and 

preferences for follow up practice. The 

findings showed there was consensus 

between the groups as to the 

perceptions for current follow up 

practice; to monitor early complications, 

to detect recurrences early, and to detect 

late effects of treatment. With regard to 

preferences for the future, respondents 

were more likely to prefer approaches 

they had experienced, as opposed to 

those they had not experienced. 

This article is now in press as: Frew,G. 

et al., Results of a Quantitative Survey to 

Explore Both Perceptions of the Purposes 

of Follo..., Clinical Oncology (2010), 

doi:10.1016/j.clon.2010.06.008 

• The patient consensus meeting in 2008 

concluded that patients are not adverse 

to new approaches to follow up care 

and support but need to have good 

quality information, rapid access to 

specialist care as needed, and a care 

plan which is agreed by all those 

providing care and is owned by the 

individual patient. A copy of the notes 

from the meeting can be found at: 

www.improvement.nhs.uk/cancer 

• A rapid review of current follow up 

practice, in three tumour sites, took 

place across the cancer networks in 

England during the summer of 2009. 

The findings showed a mainly medical 

model of care where one size fits all was 

the norm. There were, however, pockets 

of good practice around the country but 

this had not spread to other tumour 

areas, clinical teams or across 

organisations. 

The full report can be found at: 

www.improvement.nhs.uk/cancer or 

www.ncsi.org.uk 

• Supporting and coaching national test 

communities to pilot elements on 

potential new models of care for people 

living with and beyond cancer. 

As our knowledge and learning has 

developed and the demands on the 

service have changed particularly through 

the QIPP agenda, the test communities 

have risen to the challenge with flexibility 

and professionalism. We would like to 

thank the national test communities and 

the clinical teams who have put an 

enormous amount of work and effort into 

testing new elements of care and support 

for individuals living with and beyond 

cancer. 

For those of you who are not currently 

part of this work we would recommend 

you seek further information from the 

national team supporting this workstream 

or the test communities direct. The key 

contact for individual test communities 

can be found on their improvement stories 

and the contact details for the national 

team can be found at the back of this 

publication or online at: 


Gilmour Frew 

Director: Cancer Improvement 

NHS Improvement


Elements of new models of care 

System Enablers 

Client Relationship 

Management System: 

Bristol - Page 12 

Survivorship Living 

Well Courses 

Patient information 

development sites: 

Hillingdon** 

Christie* 

Hull** 

Mount Vernon* 

Risk stratification: 

Taunton** 


Mount Vernon* - Page 38 

Hereford - Page 28 

Ipswich** 

Guys* 

South of Tyne & Wear - Page 43 

Clatterbridge - Page 18 

Birmingham* - Page 6 

Community 

Support 

Telephone 

Management 

Primary Care 

Led Services 

Gloucester: 

Village Agents - Page 22 

Medway - Page 36 


Guys & St Thomas’ - Page 26 


Worcester - Page 53 

Velindre Cancer Centre: 

(Herceptin pathway) - Page 50 

Luton - Page 31 


Exercise/ 

Rehabilitation 

Workforce 

Development 

Education 

Day/Session 

Sheffield - Page 41 

Bournemouth - Page 8 

Royal Free Hospital and 

Marie Curie Hospice - Page 39 

Sheffield (Health Needs 

Assessment) - Page 41 

Luton (Oncology 

Awareness) - Page 34 

Mount Vernon* (e Learning) 

Velindre Cancer Centre 

(Breathlessness pathway 

professional education 

package) - Page 47 

UCLH - Page 45 


Worcester - Page 53 

Sheffield - Page 41 

Christie (user 

engagement) - Page 16 


(Breathlessness pathway 

self management) - Page 47 

East Kent (User focus 

groups) - Page 20 

Herefordshire - Page 28 

* Indicates that additional improvement strories are available online at: www.improvement.nhs.uk/cancer 

** Indicates that additional improvement strories will be available online when testing is complete 

Those test communities currently testing assessment and care planning and treatment 

record summaries will have their improvement stories online once testing is complete.


NHS Birmingham East and North Health Economy 

The impact of a community Macmillan 

nurse in curative care 

Summary 

Pan Birmingham Cancer Network and 

NHS Birmingham East and North 

(NHSBEN) have worked together 

throughout the testing process to 

develop five projects within the NCSI 

programme of work, targeting breast 

cancer patients within the PCT treated 

at Good Hope Hospital. A focus group 

was held to test out the ideas that 

came from some gap analysis which 

gave valuable feedback to each of the 

individual services which were involved 

within the Cancer Awareness and 

Recovery Enhancement (CARE) project 

and what became clear was that 

further definition of services was 

required to prevent overlap of the five 

work streams involved in the project. 

The five projects taken forward were: 

• Bridges Care - Testing the use of a 

charity organisation offering 

individual needs assessment 

facilitating a bridge between health, 

social and community organisations 

• Own Health Care – A partnership 

with Pfizer Health Solutions, testing a 

telecare model to provide support, 

assessment, signposting and referrals 

• Hospital Care - Ensuring 

consistency of access to post 

treatment services irrespective of 

treatment aim 

• Specialist Nurse Care – Testing a 

primary care based cancer nurse case 

management model for those 

patients within Macmillan level 

3 and 4 

• Self Management Care – testing a 

six week post treatment self 

management course entitled HOPE 

(helping overcome problems 

effectively). 

Improvement stories about progress in 

each of the five projects are available 

online. 

The following story focuses on 

specialist nurse care, testing the 

Macmillan Primary Care Cancer Nurse 

(MPCCN) service, a unique service 

within NHSBEN and Macmillan. The 

role steps away from the traditional role 

of the community Macmillan nurse in 

end of life care. It is an innovative role 

which aims to provide complex, expert 

assessment to identify and address the 

problems faced by patients living with 

breast cancer. It also helps deal with the 

complexities and adverse effects of 

acute oncological treatment whilst 

maintaining (where possible) the 

patient in the community setting. 

What was the problem 

Patients with breast cancer face not 

only the dramatic impact of their 

cancer diagnosis but also prolonged 

multiple modalities of treatment which 

can have a profound impact on them, 

physically, psychologically, sexually, 

spiritually and financially. If complex 

needs of breast cancer patients are not 

addressed early this can affect how 

they cope with their breast cancer 

treatment but also how they cope with 

their transition from cancer patient to 

cancer survivor. 

What was done 

For the purpose of this project the role 

of the MPCCN was re-designed to 

provide support in primary care for 

patients undergoing their cancer 

treatment for breast cancer. 

In response to the need for clear 

definition of services the MPCCN 

devised clinical outcomes, measures 

and a patient evaluation questionnaire. 

The measures are captured on the 

patient administration system (PAS) 

database including the number of 

contacts and interventions with each 

patient. 

The MPCCN was integrated into the 

breast cancer multidisciplinary team at 

GHH (MDT) and she attends the weekly 

meetings. 

To raise the profile and develop an 

understanding of the role, the MPCCN 

presented the service to the breast MDT 

and oncology nursing team. Patient 

information leaflets were also devised 

which would be made available to the 

breast care team and oncology team to 

be given to appropriate complex 

patients at time of referral. Clinical 

letters are sent to individual GPs 

following the initial and any 

subsequent holistic needs assessments 

including information on each patients 

individual care plan. 

What difference has the testing 

work made 

Since testing began the MPCCN has a 

caseload of 35 complex patients who 

require Macmillan level 3 and 4 

intervention. Every patient who is 

assessed by the MPCCN is given an 

individualised care plan which is 

reviewed at each subsequent visit; 

The MPCCN has prevented 11 accident 

and emergency admissions and over 

100 outpatient attendances.


Did the specialist report reduce the number of times you needed to 

visit your GP or oncology unit 

Frequency 

5 

4 

3 

2 

1 

0 

Strongly Agree 

Reduce Appointments 

Evaluation forms are given to patients 

four months after referral to the 

MPCCN. Improvements currently being 

appraised by this evaluation include 

improved symptom management and 

self-management of treatment induced 

side effects. 

The MPCCN utilises expert 

communication skills to assess and 

explore the psychological impact on 

each patient, anxiety and depression 

scores are undertaken where 

appropriate and to date there have 

been seven referrals to the clinical 

psychology service for specialist 

intervention. 

Specialist support, training and 

supervision have been provided to 

district nurses to enable them to 

maintain patient’s central venous 

catheters at home throughout the 

duration of their chemotherapy 

treatment. The MPCCN audited the 

training needs of district nurses caring 

for breast cancer patients disseminating 

Agree 

the findings to nurse managers and the 

education and training department in 

the PCT. 

Learning so far 

So far we have learnt that although 

patient’s can be referred at any point 

from diagnosis the majority of referrals 

are received from the oncology team. 

Evaluation will determine if patients 

feel that they were referred to the 

service at the right time; the majority of 

referrals are from nurses. However, 

oncology nurses reported that when 

they are busy or short staffed referrals 

may be missed and they found the 

referral forms too time consuming. To 

overcome this it was agreed that 

telephone referrals would be accepted 

and the MPCCN would aim to meet 

with the oncology team at least once a 

week. 

Attending the MDT has proved very 

beneficial. Attendance enables the 

identification of potential new patients 

and provides a forum for informal 

clinical supervision by giving the 

MPCCN the opportunity to discuss 

clinical issues with the team therefore 

reducing the effects of isolation on the 

post holder. 

A clear patient need has been identified 

for the majority of referrals with only 

one patient opting out of the service. 

Next steps 

The next steps for the MPCCN are to 

continue with the testing, providing 

specialist advice, assessment and careplanning 

to complex breast cancer 

patients, their families and carers in 

their homes within NHS BEN. The 

MPCCN will demonstrate the quality of 

care provided through the measures 

data captured on PAS, and from the 

clinical outcomes also identified in the 

patient evaluation. 

Contacts 

Kelly Fisher, 

Service Improvement Facilitator 

Pan Birmingham Cancer Network 

Kelly.Fisher@westmidlands.nhs.uk 

Jayne Breen, 

Macmillan Primary Care Cancer Nurse 

jayne.breen@benpct.nhs.uk


Bournemouth Test Community 

Cancer survivors exercising their way back to health 

Summary 

• The Bournemouth After Cancer 

Survivorship Project (BACSUP) is an 

innovative collaboration between 

Royal Bournemouth and Christchurch 

Hospitals NHS Foundation Trust, The 

Littledown Leisure Centre 

(Bournemouth Borough Council), 

Bournemouth and Poole Primary Care 

Trust, Macmillan Cancer Support, 

Dorset Cancer Network and 

Bournemouth University to deliver an 

individualised three-month physical 

activity programme; Living Active & 

Well Programme, to 200 cancer 

survivors (breast, colorectal and 

melanoma) following treatment 

• The aim was to promote physical, 

psychological, social, and spiritual 

health and wellbeing and include 

strategies to promote self care for 

living with and beyond cancer 

• Provisional outcome results (69:200) 

from objective and subjective 

measures suggest the project has 

successfully achieved its aims. It also 

aims to improve communication 

between survivors and health 

professionals by introducing 

assessment and care planning, and 

between secondary and primary care 

by reviewing current processes and 

exploring the potential of the care 

plan being a live document that 

facilitates the transition from primary 

treatment in secondary care back to 

primary care. 

The project can be viewed on YouTube: 

www.youtube.co.uk/activehealthlink 

The issues 

• A local test project identified a range 

of health issues reported by breast 

cancer survivors included reduced 

physical function (e.g. range of 

shoulder movement), levels of fitness, 

stamina, self esteem, poor sleep and 

weight gain 

• These could potentially impact on the 

survivor, their partners and significant 

others. BACSUP used a range of tools 

and one to one assessment with 

specialist nurses to measure these 

health issues more accurately 

• Focus groups were held with 

representatives from each of the 

three tumour sites and interviews 

with representatives from each 

multidisciplinary team and primary 

care to ensure the project was 

focused, relevant and timely. 

What was done 

From the focus groups and interviews 

with survivors, health care, and leisure 

services staff, the following issues were 

incorporated into the planning and 

delivery of the project: 

• Monthly multidisciplinary, multi 

organisational steering group 

meetings established with dedicated 

project management support 

• Assessment and care planning 

• Assessment tools – quality of life, 

fitness etc 

• The issue of ‘safety’ in relation to 

physical activity post cancer 

treatment. 

• Weight management 

• Nutrition education 

• Improve communication between 

primary and secondary care. 

• Identify and/or create documentation 

and assessment tools to support the 

projects aims such as various relevant 

quality of life tools 

• Development of a project database 

• Identification of important issues for 

tumour site teams e.g for the breast 

team, shoulder function and the 

colorectal team, weight 

management. 


work made 

The implementation of robust 

assessment and care planning practices 

is essential to assess and meet the 

health needs and support the delivery 

of individualised care for cancer 

survivors. It can also improve 

communication and manage the 

transition from secondary to primary 

care. 

Some staff identified personal 

education needs to improve their 

delivery of the survivorship agenda. 

Within the project this was mainly 

addressed by the sharing of relevant 

research material. Preliminary results 

from the QOL tools suggest a trend 

towards improvement between pre and 

post intervention scores in keeping with 

the objective scores from the physical 

fitness assessments. 

‘The teams knowledge 

and expertise was 

astounding and I felt 

energised to pursue.’ 

‘The team were 

wonderful… very 

encouraging. I got 

enjoyment and noticeable 

improvements from the 

programme.’


Living Active and Well Programme outcomes 

Outcomes of those who successfully completed 12 weeks 

(numbers shown out of the total for whom the outcome was relevant for): 

Tested 

Improved CV fitness: (93%) 

Improvements to BP (of those with starting BPs >130 SBP and >85DBP): (90%) 

Weight loss (59%) 

Self reported 

Improved feelings of wellbeing: (97%) 

Less fatigue: (94%) 

Improved shoulder function: (77%) 

Improved lymphoedema: (66%) 

Improved self-image: (100%) 

Improved flexibility: (94%) 

Will continue to exercise after the 12 week period: (100%) 

Number of partners also engaged in the programme: (25%) 

The learning so far 

• Mutually beneficial, strong, 

collaborative relationship has 

developed between the health and 

leisure services staff 

• Shared learning has changed 

attitudes and raised awareness 

among health service staff of the 

benefits of physical activity. It is now 

more routinely raised in 

consultations. Media events and 

word of mouth have raised 

awareness amongst other cancer 

survivors 

• Teams who were not undertaking 

formal assessment and care planning 

prior to BACSUP, recognise the level 

of undiagnosed unmet health and 

social needs is significant and 

requires action 

• Greater success was achieved where 

weight loss management was 

targeted with both physical activity 

and diet, involving a lifestyle coach 

• Participants that wanted a partner or 

significant other to take part found 

that they both achieved health 

benefits 

• Some survivors of breast cancer 

reported that body image concerns 

and the open plan design of many 

swimming pools prevented them 

from returning to swimming after 

treatment. A suitable pool was 

identified and exclusive classes set 

up. The experience was rated as 

highly successful by those who 

participated. A survivor representative 

on BACSUP is planning to take this 

forward as a survivor-led swimming 

group. 

‘Top tips’ 

Before the project starts: 

• Clearly identify suitably qualified 

administrative support. 

• Appropriate IT support. 

• Staff ‘buy in’ before the project 

starts. Is it realistic to expect them to 

add this commitment to their current 

work load 

• Are there contingency plans to 

sustain the project if a key member 

of the project team is absent for a 

period of time 

Next steps 

• A package of information will be 

developed for treatment side effects 

and self care strategies for insertion 

into the care plan to promote safe, 

consistent advice from professionals 

• Completion of two research projects 

identified in response to issues 

identified during focus groups on 

nutrition and shoulder function. 

Contacts 

Layne Hamerston, 

Partnership Development Manager 

layne.hamerston@bournemouth.gov.uk 

Dexter Perry, 

Consultant Surgeon, 

dexter.perry@rbch.nhs.uk 

‘The programme was tailored for me and I am 

pleased to be invited to participate and am happy 

with the results.’


Brighton and Sussex University Hospital NHS Trust 

Improving quality for patients with lung cancer 

Summary 

A process mapping exercise highlighted 

areas for improvement in the care of 

patients with lung cancer and led to a 

newly designed pathway. A weekly 

multidisciplinary Combined Cancer 

Clinic (CCC) within the Sussex Cancer 

Centre at BSUH has now been 

established where patients at any stage 

in their treatment pathway postdiagnosis 

have a holistic assessment 

carried out. The clinic has been 

designed to be more flexible to suit 

patients’ needs, allowing them to 

trigger an appointment or cancel if not 

required and rebook for a later date. 

During the consultation a Treatment 

Record Summary (TRS) is produced 

which is given to the patient either at 

the clinic or sent to them and their GP 

within 24hrs. The patient also has a 

detailed assessment and care plan 

(ACP) completed by the specialist 

nurses. All documents are given to the 

patient to be kept in their own patientheld 

record. Early feedback from both 

patients and staff has been very 

positive. Results from local and national 

measures are still awaited as the study 

period is not yet complete. Further 

development of the CCC will see the 

inclusion of a dedicated oncologist and 

a thoracic surgeon. 

The problem 

A few issues were noted with the 

current lung cancer patient pathway: 

• Multiple clinics where patients 

were seen 

• Multiple sites where clinics were held 

• Suboptimal Macmillan nurse 

availability 

• Periods when care passed between 

different services with the risk that 

patients could be lost 

• Inadequate time with the patient for 

a detailed assessment of all their 

needs 

• Lack of access to other services 

particularly psychological support. 

What we did 

We held a process mapping exercise 

attended by all healthcare workers 

involved in the lung cancer service. A 

detailed map of the current service was 

reviewed and areas of potential risk 

were identified. An ideal pathway of 

care was designed/agreed by the MDT. 

As part of the improvement, a 

combined cancer clinic with 

multidisciplinary input was established 

and held in the Sussex Cancer Centre. 

This clinic was designed for follow up 

of anyone known to have lung cancer 

(i.e. at any point beyond the 

consultation where the bad news was 

broken). Patients could be seen by 

respiratory physicians, palliative 

medicine specialists and the Macmillan 

cancer nurses, with input from 

oncology. The duration of the 

appointment was extended to 

acknowledge the amount of additional 

work created by carrying out the 

Treatment Summary Record and ACP. 

These documents were given to the 

patient in clinic once complete where 

possible and kept in a dedicated 

patient-held record. This enabled access 

by the patient/carer, GP, community 

services to vital information regarding 

ongoing treatment plans, side effects 

and complications, as well as signs 

which may need further assessment by 

a health professional. Patients were also 

given the option of cancelling/delaying 

their appointment if not needed, or 

self-triggering a consultation if 

required. 

Local measures were set to ensure that 

these changes were monitored both in 

terms of their effect on the demand on 

the service and quality of care provided. 

An Access® based electronic database 

for the completion of the Treatment 

Record Summary and the ACP was 

developed as completion of paper 

based records during consultations 

proved to be very time consuming. This 

replaced the previous standard letter to 

the patients GP. 

Local measures included: 

• Change in distress thermometer 

scores (using DT) recorded at each 

attendance in outpatients 

• A local questionnaire assessing 

patients’ experience of the previous 

system of care with plans to reassess 

the effect of CCC on their 

experience 

• The number of lung cancer patients 

admitted monthly as unscheduled 

attendances via A&E compared with 

the same time frame in previous 

years 

• The number of outpatient 

appointments triggered/cancelled 

and DNA 

• Referrals made to services outside the 

MDT (e.g. psychological support/ 

dietician/physiotherapy etc). 

What difference has the 

testing work made 

Early indications are that the new service 

model is working. The ability to tailor 

appointments to suit the patients’ needs 

has been noted both by patients and 

staff as beneficial and has led to a sense 

of better quality care. Overall, although 

the number of questionnaires given out 

has been a little onerous only one 

patient has declined to complete one.


Non elective emergencies appear to be 

reducing compared to data in previous 

years. Of those patients admitted 

between February and May 2010 none 

were patients who had received care 

through the new service suggesting 

that we are helping to avoid 

unscheduled admissions. 

Because of the setting of the clinic and 

the increased time allotted to each 

patient, we have been able to carry out 

certain procedures in the cancer centre 

(e.g. pleural aspiration), thereby 

avoiding need for emergency admission 

or re-attendance at a later date for an 

outpatient procedure, all of which 

patients have found distressing. 

A&E admissions relating to lung cancer 

Number of admissions 

14 

12 

10 

8 

6 

4 

2 

0 

2008 2009 2010 

Jan Feb Mar Apr May 

Months 

Jun 

The baseline CESU questionnaire 

indicated a high level of satisfaction 

with the original service but also 

suggested that 25% of patients felt 

their worries about their condition or 

treatment weren’t discussed, that they 

or their carers weren’t given enough 

information about their condition or 

treatment (30%), that they would have 

liked to receive written information 

before they left the OPD (25%) and 

that they were not told who to contact 

if they were worried about their 

condition or treatment (50%). We 

await the results of the second 

questionnaire assessing the CCC. 

Of the 20 patients contacted by the 

CNS a week before their appointment, 

4 opted to cancel their appointment as 

there was no need to attend. These 

slots were filled by either new patients 

or patient triggered appointments. 


• Reviewing the whole care pathway 

for lung patients has provided a 

sound baseline for sustainable 

improvements to the quality of care 

• Sharing the issues identified by the 

mapping event with the whole 

respiratory team and jointly agreeing 

priorities for action has accelerated 

progress 

• The identification of baseline 

measures and recording of data is 

providing valuable evidence to 

support improvements in practice 

and will help support the vision to 

establish a similar service on other 

hospital sites and amongst other 

tumour groups 

• The appointment of a project 

manager, the development of an 

electronic database, and the strong 

support of clinicians and nurses 

currently involved in lung cancer 

patient treatment and care are 

important steps in ensuring 

successful participation in this 

project 

• The process of ACP is time 

consuming. 

Next steps 

The study is ongoing. Further 

development of the CCC will see the 

inclusion of a dedicated oncologist and 

a thoracic surgeon. It is intended to 

report individual case studies. A new 

A&E electronic tracking system will flag 

up any lung cancer patients admitted 

and alert lung clinicians and cancer 

nurses by e-mail. There is a training 

need of further clinicians and other 

staff for sustainability of the new 

system. 

Contact 

Dr Sarah Doffman 

Consultant Respiratory Physician, 

sarah.doffman@bsuh.nhs.uk,


North Bristol NHS Trust 

Self management programmes and different 

models of follow-up care in cancer survivorship 

North Bristol NHS Trust is the largest 

surgical cancer treatment centre in the 

South West. In recent years, teams have 

transferred responsibility for follow up 

from medical personnel to clinical nurse 

specialists (CNS); however they have 

been continuing to follow a medical 

model. 

The aim of this project was to explore 

the quality of support, information and 

follow up for cancer survivor’s following 

treatment. A health needs analysis 

and focus group, inviting users to 

explore unmet needs was undertaken 

in four tumour sites: breast, colorectal, 

urology and haematology. This helped 

us identify gaps in service provision and 

to design a model that delivers 

supported self care and holistic needs 

assessment (HNA). 

The Penny Brohn Cancer Centre and 

University of the West of England 

(UWE) have been working 

collaboratively with us on this project. 

Big Clinics: Information and support 

days 4-6 months post treatment 

Uptake for all four tumour sites 

between 60-70%. 

Colorectal Big Clinic patient 

feedback 

• Good opportunity to review 

current/future regimes 

• Exercise programme was useful and 

the surveillance programme and 

symptoms to look out for were good 

• It has given me the incentive to do 

more exercise 

• To review my diet and exercise 

• Change diet and exercise more 

• To maintain regular exercise 

• Look after my diet more 

• Feel more confident to engage in 

physical exercise 

• Sessions very informative. 

Feedback from evaluation forms 

Colorectal Big Clinic evaluation results 

The colorectal team were not convinced 

of the benefits therefore only booked a 

half day. They were surprised by almost 

100% uptake with an unexpected 

outcome of the group consisting 

predominantly of men. 

Big Clinics for prostate, kidney and 

bladder cancer had very similar results 

reporting of 70-95% relevance in topics 

covered. There has been such an 

interest in the success that the Lung 

and Upper GI cancer teams approached 

the cancer services team to run their 

own big clinic days. Due to these 

tumour sites having patients with 

poorer prognosis at the outset we were 

keen to see the teams’ approach and 

evaluations. 

Lifestyle management 

The models of self management chosen 

to test were: 

• Big Clinic days run by the clinical 

teams 

• 10 week course, one day a week run 

by Penny Brohn Cancer Care 

• Residential weekend course run by 

Penny Brohn Cancer Care 

• Cognitive Behavioural Therapy (CBT) 

course for breast and prostate cancer 

patients run by clinical psychologists 

and CNSs. 

Good and relevant 

105 

100 

95 

90 

85 

80 

75 

99.5 

Venue 

92.85 

Diet 

Advice 

85.7 85.5 85.73 

Complimentary 

Therapy 

Fitness 

& Exercise 

Recurrence 

Symptoms


Lung Big Clinic evaluation results 

Good and relevant 

120 

100 

80 

60 

40 

20 

0 

Venue 

Patient 

Story 

Diet Physio Treatments 

Living Life 

to the Full 

Can you list two ways in 

which your life may change 

following today’s event 

• Being more positive 

• Try to be more active 

• Start living normally again 

• Do more exercise 

• That I can exercise 

• To stop using my cancer as an 

escape 

• Exercise with confidence 

• Not to make excuses and to 

start doing housework again 

• Go on holiday 

• More positive outlook 

• Don’t panic and give up. 

The lung team ran a Big Clinic and now 

run them on a rolling three monthly 

basis. The evaluation highlighted some 

patients would benefit from more indepth 

support from one of the more 

structured courses. 

Patient feed back from the 

Big Clinic day 

Can you list two things that 

you have learnt from today 

• Meeting others that have the 

same problems 

• Available support 

• I am not alone 

• Diet and travel information 

• To realise that I am not 

discarded 

• Not to be concerned about 

shortness of breath 

• Physio info was good I have 

learnt you don’t have to stop 

when you feel breathless 

• Confidence and how important 

it is to work through anxiety 

• Not as gloomy and outlook is 

more positive 

• Allowances and benefits 

• Diet and activity 

• Feel there is support 

• You can do more than you 

think 

• Breathing. 

Further comments: 

• Follow up sessions would be 

extremely helpful 

• Very worthwhile it would be 

good to have regular sessions 

• Thought the venue could not 

be bettered 

• Very useful morning 

• Very useful knowing parking 

spaces were reserved 

• Very good day – thank you 

• We enjoyed the day, its been 

very beneficial and was well put 

together.


Obtaining user’s and clinical teams’ 

views, and in setting up the lifestyle 

management programmes during 

scoping, it became evident that 

different models of follow-up care 

could be used dependant on level of 

risk of recurrence and levels of 

intervention needed. These would 

consist of a combination of: 

• Supported self management with self 

referral back into system 

• Self management with remote 

follow-up through telephone clinics 

• Self management and face to face 

follow-up 

• One of the above plus appropriate 

surveillance tests. 

Client Relations Management 

(CRM) system 

CRM systems are used by large 

companies to track important 

information about their customers, 

so whenever contact is made with a 

customer, they can have all of the 

relevant information to hand, and any 

actions can be initiated and tracked. 

Client Relations Management System 

To increase confidence for clinical 

teams to move away from a medical 

model they needed assurance that 

patients would not get lost to follow 

up. Equally, proposed changes, would 

not impact on identifying recurrence of 

cancer in any way. 

Therefore an information gathering 

process began on how patients in each 

tumour group re-presented with 

recurrence: surveillance examination, 

OPA or self referral and this audit is still 

ongoing with results pending. 

Additionally we identified that there 

wasn’t an information system that 

allowed collection of HNA, access to 

self management and generally to act 

as an alert system if the patient failed 

to have the appropriate interactions. 

Therefore we are developing a new IT 

system, the Client Relations 

Management System (CRM), which is 

jointly funded by Macmillan and the 

Trust’s IM&T department 

Having explored whether an ‘off the 

shelf’ CRM could be adapted it was felt 

that building a system to meet our 

needs would be better. 

The system will enable: 

• Summary of episodes by linking to all 

Trust systems This will include 

attendance at lifestyle management 

events and when HNA has been done 

• Diary management of lifestyle 

management events indicating when 

invites should be sent out to patients 

• Holistic needs assessment via Distress 

Thermometer recording care plans 

and reports to help determine 

themes to target Big Clinic topics and 

other support needed 

• Alert the CNS when the patient has 

not had any contact for a year in 

order that action can be taken. 

Progress and learning so far 

• High level of administration for 

lifestyle management - will improve 

with CRM system 

• Benefits have been recognised by 

other teams 

• Tumour specific sessions provided too 

late in patient’s journey therefore 

would not be included in future


• Some sessions found not relevant to 

all participants dependent on 

treatment, i.e. surgical, radiotherapy 

or hormonal. Courses redesigned so 

groups have core sessions as a whole 

then split into sub groups for more 

treatment specific relevant sessions 

• Analysis of evaluation of Penny Brohn 

courses in progress. 

Next steps 

• Qualitative analysis of lifestyle 

management approaches using focus 

groups in collaboration with UWE 

• Redesign of follow up protocols to 

adopt different model incorporating 

self management 

• Complete audit on recurrence 

presentation 

• Run and evaluate CBT courses in 

breast and prostate 

• Economic evaluation 

• Enable other cancer teams to 

replicate model 

• Write up of pilot, disseminate and 

development of commissioned 

service. 

Contacts 

Dany Bell 

Lead Cancer Nurse and Cancer 

Manager – Project Lead 

Dany.Bell@nbt.nhs.uk 

Marika Hills 

Assistant Lead Cancer Nurse – Project 

Manager 

Marika.Hills@nbt.nhs.uk


The Christie Test Community 

The importance of establishing peer group 

support for survivors of pelvic cancers 

Summary 

The Christie is a tertiary centre treating 

over 40,000 cancer patients a year, 

serving a population of 3.2 million 

across Greater Manchester and 

Cheshire. Due to the nature of tertiary 

referrals, 26% of the referrals are from 

outside the area. This project focuses 

on support for patients experiencing 

the late effects of radiotherapy 

treatment for pelvic cancers in a peer 

support group setting. We have 

achieved greater user engagement and 

are working on the sustainability of the 

peer support group. We are also 

looking at patient information and the 

oncolink web based care planning tool 

to help patients with supported self 

management and understanding the 

sign and symptoms of late effects. 


A lack of support for survivors of pelvic 

cancers experiencing late effects was 

evident from concerns and problems 

identified at the late effects clinics at 

the hospital. This coupled with the 

professional’s desire to empower 

patients to self-manage their symptoms 

of late effects to improve their quality 

of life and establish an effective peer 

support network for patients led to the 

following testing and development. 

What was done 

• Information was collated around:- 

• the prevalence of late effects 

• the level of contact with healthcare 

professionals following the acute 

treatment phase 

• the provision of patient information 

• how individuals share their 

thoughts, stories and advice with 

people in a similar position 

• The lack of opportunities for user 

involvement highlighted the need to 

host a user group meeting that 

included clinicians and patients 

• A date/time/venue to hold an initial 

‘user group’ meeting was agreed. 

The afternoon included lunch 

/networking, some appropriate 

clinicians gave formal lecture style 

presentations, chaired by the project’s 

clinical lead 

• Following this initial user involvement 

meeting, we established a database 

of patients who have been identified 

by our clinicians as suffering from the 

late effects of pelvic radiotherapy 

• Post meeting, a letter asking users to 

put forward ideas to include at the 

next session – including the 

establishment of a peer support 

group and a panel session where 

clinicians answer written questions 

submitted anonymously by users 

• Questions submitted ahead of the 

event included: 

• ‘does lifestyle influence cancer’ 

• ‘what is the risk to other members 

of the family and friends during 

treatment with radiotherapy’ 

• One of two ‘breakout’ sessions asked 

attendees to look at the ‘Oncolink’ 

online care planning system as a 

presentation and then try it at home. 

Ten people tried this and sent back 

an evaluation with mixed reviews. 

One patient stated in answering the 

question ‘how easy did you find 

generating your own care plan’ ‘not 

very easy, do not know which part is 

the care plan, would have to be told 

a bit more’ highlighting the issues of 

care planning can be at a very basic 

level 

• The other breakout group discussed 

ideas around the support group, 

specifically the organisation of when, 

and how often to meet and who 

would take on the key roles. 

However, these issues were carried 

forward with a view to enabling the 

users to make these decisions once 

there is a core membership, to ensure 

ownership and purpose of the group 

is clear. 


work made or identified 

• The feedback from attendees is good 

and they appreciate the group, 

indicating a need to continue 

offering a framework for accessing 

peer support amongst the target 

population 

• The attendees present and those 

approached to attend have helped to 

establish a large number of engaged 

individuals who could also be called 

upon to participate in other aspects 

of the project e.g. commenting on 

oncolink and patient information 

booklet content. 


• Good attendance, apparently well 

received sessions from verbal or 

informal feedback, however, there 

was no evaluation form for attendees 

to fill in following the first few 

sessions – therefore it was difficult to 

quantify the event’s success, or which 

parts were most useful 

• A lot of feedback related to what 

attendees would like in future 

sessions. This demonstrated the 

enthusiasm for peer-to-peer 

networking and a keenness to be 

involved in the planning and 

delivery of future events. This will 

ensure we have a clear idea of what 

is required, the Q&A panel with pre-


submitted questions was the 

patients’ idea and gave patients a 

chance to be heard, (see the 

evaluation graph on the right) 

• The feedback received in relation to 

the Oncolink care plan was very 

useful and demonstrates the 

necessity for patient feedback to 

inform service developments 

• For the group to be sustainable, the 

issue of its administration needs to be 

addressed as it can be challenging 

to engage patients in this work. At 

present the group is being facilitated 

by the project team and this 

consumes a lot of time. 

Next steps 

• The establishment of a user-led 

support group that is self sustaining 

and with patients in key roles running 

the group, without reliance on trust 

led facilitation 

• Continue to host user group 

meetings during the life of the 

project and assess sustainability. 

Contact 

Ben Heyworth 

Project Manager 

Tel: 07917 628 672 

Did you have a chance to say everything you wanted 

Number of respondants 

8 

7 

6 

5 

4 

3 

2 

1 

0 

7 

Yes, 

definately 

4 

Yes, to some 

extent 

2 

N/A 

1 

No


Clatterbridge Centre for Oncology 

Moving forward (or initially backwards!): setting up a 

successful education programme for patients living with 

and beyond pelvic cancer 

Summary 

Clatterbridge Centre for Oncology has 

an average of 50 patients treated on 

each accelerator every day and over 

7,000 new patients registered at the 

hospital each year. In the delivery of 

services, the Trust works alongside 

other hospital trusts within the 

Merseyside and Cheshire Cancer 

network, both as part of a joint multidisciplinary 

team approach to treatment 

of patients and in the provision of outpatient 

and day care services within 

those trusts. 

The aim of the project was to educate 

patients in a ‘Moving Forward’ group to 

live with and beyond cancer. We 

completed a baseline case note audit to 

establish if patients who have had 

treatment for pelvic cancers (colorectal, 

prostate and gynaecological) identify 

common post treatment side effects 

during their medical review in the late 

effects clinic. The aim was to establish 

the prevalence and management of 

symptoms and identify existing primary 

care services to which patients are 

referred. 

Patients were invited to attend the 

‘Moving Forward’ group and to 

complete a Sheffield Profile for 

Assessment and Referral for Care 

(SPARC) Holistic Needs Assessment 

(HNA) to ascertain whether our 

baseline case note data correlated with 

patients’ identified needs. This 

information then formulated the 

content of the sessions and provided 

evidence of need. 


The programme was aimed at preempting 

some of the problems that 

patients regularly encounter living with 

and beyond cancer which are identified 

at the late effects clinic. We conducted 

a baseline case note audit for 45 

patients (15 gynaecological, 15 

prostate, 15 colorectal) looking for 

documented post treatment side effects 

e.g. sexual health issues, bowel and 

bladder problems, to see whether there 

was any documented care plan or 

evidence of onward referral to 

appropriate agencies. The audit 

confirmed the results from the Picker 

baseline survey where patients 

indicated that they had concerns about 

late effects and would have liked more 

information regarding these and where 

to access help and advice. 

What was done 

• The baseline audit set the educational 

agenda to address the common post 

treatment side effects for the first 

programme. 67 patients were 

invited, 15 phoned to confirm 

attendance and returned a 

completed SPARC before the course 

commenced. Some minor alterations 

i.e. dietetic advice were added 

following collation of the data from 

the returned SPARCs 

• During this first session some 

signposting was done for identified 

level 3 needs as defined in the SPARC 

tool i.e. a patient that feels that in 

the past month they have been 

distressed or bothered by the 

problem ‘very much’ 

• Interestingly, some patients who 

declined to attend still sent back the 

SPARC and their identified needs 

mirrored those of the group 

participants. 67 patients invited, 21 

attended, six of whom turned up 

having not responded but brought 

SPARC with them, five returned 

completed SPARCs but couldn’t 

attend the sessions. 

What difference has this testing 

work identified 

Positives 

• Patient needs identified from the 

baseline audit and SPARC 

assessments showed the same types 

of emotional and information issues 

being raised 

• SPARC responses identified post 

treatment side effects e.g. 

psychological issues, fatigue, exercise, 

getting back to work 

• The casenote audit and completed 

SPARCs revealed that there were no 

consistent onward referrals. This has 

resulted in greater awareness within 

the Clatterbridge team and clear 

onward referrals pathways and 

robust partnership working 

• Effective cross boundary working and 

sharing of expertise. 

Negatives 

• If additional needs are identified after 

the agenda has been set, timescales 

can make it difficult to access other 

Allied Health Professionals for their 

input 

• When SPARC is completed 

anonymously only general 

signposting for further support 

services could be done as part of a 

group session. A robust policy for the 

use of SPARC in this setting is 

essential.



• SPARC is easy to use, easy to 

interpret. Participants are happy to 

complete 

• Format of the group sessions needs 

further exploration as small breakout 

groups were problematic, before the 

group developed confidence in one 

another 

• Group sessions were held in a very 

accessible community centre which 

offers a less formal opportunity to 

chat to health professionals 

• Having a run through of the each 

session prior to delivering it to 

participants would perhaps have 

identified issues i.e. more facilitators, 

different room placements, 

appropriate Health Care Professionals 

• Don’t change the day the group 

runs!! We changed the day due to 

the hall being unavailable and despite 

this being highlighted as much as 

possible, several patients still turned 

up on the wrong day. 

We are also liaising with highlighted 

services to establish whether there has 

been an associated increase in number 

and appropriateness of referrals, e.g. 

speaker from continence service has 

highlighted the number of referrals 

from programme session on 

continence. 

Contacts 

Mhairi Hawkes 

Cancer Nurse Specialist 

mhairi.hawkes@ccotrust.nhs.uk 

Hannah Roberts 

Occupational Therapist 

hannah.roberts@ccotrust.nhs.uk 

Next steps 

In the next course we will: 

• Pair sessions together where 

information follows a similar theme 

e.g. continence and sexuality, fatigue, 

exercise and work 

• Adjust times of sessions to cater for a 

wider range of patients e.g. run on 

consecutive evenings rather than 

weekly in the afternoons 

• Ensure availability of identified 

speakers, to co-ordinate with 

availability of venue and dates 

arranged.


East Kent Hospitals University NHS Foundation Trust 

Patient group involvement in shaping assessment 

and care planning (ACP) 

Summary 

The East Kent Hospitals University NHS 

Foundation Trust (EKHUFT) comprises 

three hospitals with a population of 

750,000 people. The cancer centre is 

based at Kent and Canterbury Hospital 

with further diagnostic and outpatient 

services provided in Margate and 

Ashford. The focus of the survivorship 

project was to develop with patients 

and clinical teams an improved model 

of care for survivorship that listens to 

and responds to patient needs. 

A series of focus groups with patients 

who are living with or beyond a 

diagnosis of cancer over the last year 

have identified ways to improve 

services across the cancer pathway 

focusing specifically on the survivorship 

phase and to advise on the use of 

assessment and care planning tools. 


Focus group participants reported that 

following treatment they experienced 

feelings of isolation, abandonment and 

anger, with little opportunity to discuss 

their needs. They didn’t know who to 

contact and felt their GPs had limited 

information about their condition and 

treatment. They were confused about 

the role of the Cancer Nurse Specialist 

(CNS) and key worker. 

The national Picker Institue baseline 

survey of 70 breast cancer patients 

reflected similar feedback and found 

that: 

• 87% patients didn’t have a care plan 

• 34% didn’t know what to expect at 

future appointments 

• 58% received insufficient information 

and advice 

• 31% didn’t know who to contact in 

hours and 74% patients didn’t know 

who to contact out of hours if they 

had a problem. 

A further local baseline assessment of 

100 sets of case notes for patients with 

a diagnosis of breast cancer identified 

that whilst medical needs were 

documented there were few 

psychosocial or support needs 

recorded. 

What was done 

• Patients were invited in via local 

support groups to attend focus group 

meetings to identify service gaps and 

explore ways to help others move 

forward following treatment 

• The team mapped the current and 

future care pathway for breast 

patients treated with curative intent. 

This work supported the emerging 

ideas from the focus groups: 

1)To test whether a discussion at the 

end of initial treatment and between 

first and second follow up visit would 

improve the patient experience. 

2)To develop a tool for assessing the 

overall ‘wellness’ of the patient at 

each surgical outpatient visit 

• A team of clinical nurse specialists 

from across the Trust were convened 

to test this approach and test two 

types of tools: 

1)The full NCSI ACP framework tool 

was tested on 16 patients. It included 

a patient self assessment tool, an 

assessment record completed by the 

professional and a management and 

support plan for the patient to keep. 

2)The Distress Thermometer tool. This 

was tested on 14 patients 

• Face to face and telephone 

assessments were carried out by the 

CNS or oncology nurse 

• A ‘wellness’ tool, based on the 

Velindre Cancer Centre breast cancer 

health questionnaire, was developed 

and implemented. This prompts 

discussion between the patient and 

breast surgeon in follow up 

consultations. 

Learning 

General 

• Feedback from the focus groups was 

that patients were pleased to support 

the project, be ‘given a voice’ and the 

opportunity to influence care. For 

professionals, user involvement has 

provided a unique insight into the 

care provided and areas for 

improvement 

• The development and review of the 

assessment tools within a CNS 

project group has created interest, 

enthusiasm and ownership, taking 

the project forward 

• Feedback states the ‘wellness tool’ is 

a useful prompt for discussion. 

during clinic consultation with 

patients and professionals finding the 

tool simple to use 

• CNS’s felt that an end of treatment 

assessment identified needs that may 

otherwise have been missed. 

However, both patients and staff felt 

the process should commence at 

diagnosis and be reviewed at key 

points in the pathway 

• Not all patients were willing to 

complete a self assessment, many 

preferring the professional to 

complete the checklist with them 

• An assessment can be successfully 

completed by phone. Assessment 

times ranged between 15 to 60


minutes with an average of 35 

minutes, however, they took longer 

and were less productive where the 

professional was not known to the 

patient prior to the meeting 

• Professionals and patients benefit if 

the assessor has completed advanced 

communication skills training 

• Testing suggested that a structured 

job plan with dedicated assessment 

time is required to enable roll out and 

sustainability across the organisation. 

Learning from using the NCSI 

assessment and care planning 

framework tool 

• Of the 16 patients asked to complete 

the self assessment section none 

opted to complete it. Reasons cited 

were: form too complex, difficult to 

use and not patient/user friendly 

• Professionals felt the two assessment 

tools would be more useful as a 

baseline assessment at diagnosis. 

One patient said ‘I would have liked 

this prior to treatment starting’ 

• Some staff felt the documentation 

was too long and took excessive time 

to complete. It was difficult to 

complete live and required flicking 

between pages. 

Learning from using the Distress 

Thermometer Tool 

• Patients and staff disliked the term 

‘Distress Tool’ for patients in recovery 

and several CNS’s felt that the 

domain headings in the tool rather 

than the thermometer itself provided 

a better prompt for discussion. The 

CNS team proposed a more 

professionally led ‘concerns tool’ 

using tick boxes to identify key issues 

with the patient 

• The patient working group preferred 

the DT tool over the NCSI tool. They 

suggested the thermometer be kept 

but replaced with title ‘The stress 

scale’ so it is less medical and more 

patient friendly. 

Next steps 

1. Report user group views to CNS 

team to agree an assessment tool 

that can be tested earlier in the 

pathway 

2. Map the whole care pathway for 

each tumour to agree the key points 

at which an ACP discussion should 

occur, the location, the tools and 

with whom the results are 

communicated to ensure a 

standardised approach to ACP across 

the Trust 

3. Review job plans for CNS staff to 

support implementation of ACP 

4. Test the NCSI Treatment Record 

Summary for GPs to improve 

primary/secondary care interface 

communication 

5. Work with network wide breast 

group to use the ACP process as an 

enabler for stratifying patients into 

supported self management 

pathway as alternative to traditional 

follow up 

6. Undertake second national Picker 

Institute survey for patients who 

have participated in the new 

pathway 

7. Test the use of ‘wellness tool’ with 

breast patients prior to attending 

follow up clinic. 

Contact 

Mary-Anne Lovett 

Lead for Cancer Survivorship Project 

mary-anne.lovett@ekht.nhs.uk


Gloucestershire Test Community 

A real life example of partnership working 

Summary 

The Gloucestershire Survivorship project 

involves cancer patients and carers, 

employees from the 3 Counties Cancer 

Network, Gloucestershire Hospitals NHS 

Foundation Trust, Gloucestershire 

Community and Adult Care, 

Gloucestershire Rural Community 

Council and Macmillan Cancer Support 

all working together to support cancer 

survivors. The local initiative is delivered 

through a pre-existing Village Agent 

service originally launched in 2006. This 

pilot has expanded the remit of the 

existing Village Agent service to cover 

all areas of Gloucestershire and to 

support anyone aged 18 and over who 

is living with or beyond cancer. 

Gloucestershire has a population of 

582,600, a third of whom are classified 

as living in rural communities and 

44,000 are recorded as experiencing 

extreme poverty. 

Village Agents: 

• Bridge the gap between local 

community and statutory and 

voluntary organisations 

• Act as facilitators and provide high 

quality information 

• Are based within the community and 

visit people in their own homes 

• Are unique to Gloucestershire and 

have been commended nationally 

• Are employed to work about 10 

hours per week 

• Can identify unmet needs (e.g. 

financial, practical, social, emotional) 

and signpost to a wide range of 

services 

• Offer help and support when 

required 

• Have undergone further training in 

preparation for this project in 

assessment, care planning and 

identifying needs for patients with 

cancer 

• Can speak a number of languages to 

reduce barriers experienced by black 

and minority ethnic communities 

• Have ongoing support to help them 

with this role. 

This project is therefore an exciting 

opportunity to work in partnership with 

social care providers to develop a 

distinctive service for cancer survivors 

and their carers in the county. 

What was done 

• Recruited and identified eight Village 

Agents willing to support this project 

and work an additional 10 hours per 

month 

• Developed training and support 

package to undertake this role 

through CNS, clinical psychologist 

and other health care professionals 

• Development of a manual as a source 

of reference to support signposting 

and contact details 

• Developed publicity materials such as 

GP, local community and bus 

advertisements and leaflets 

• Developed learning sets/supervision 

for continuing support. 


Whilst there is full support for the 

added value of this project, we’ve 

experienced difficulties such as lower 

numbers of referrals than expected 

accessing a Village Agent. The team 

has worked hard on advertising 

however; this largely depends on 

people self-referring and an 

opportunity for people to become 

familiar with the service. Village Agents 

have found ‘word of mouth’ and 

‘familiarity’ to be the most effective 

strategies historically. As this is a pilot, 

there have also been concerns whether 

this service will continue to be available 

if people refer their patients. 

In terms of cost; there has been 

concern that the Village Agent service 

may be viewed as an ‘add on service’ 

but the focus of increasing quality of 

life as well as early signposting by 

agents could have positive long-term 

consequences. If this pilot was rolled 

out as part of health and social care 

across the country it would enable all 

people living with and beyond cancer 

access to timely support regardless of 

the stage of the cancer pathway. 

Outcomes so far 

• 27 people have contacted the VA 

service; 14 female, 13 male. Of 

which 19 have diagnosis of cancer; 

the remaining eight have a friend or 

family member who has cancer 

• The cancer diagnoses have ranged 

from prostate cancer to kidney cancer 

with the most common being 

prostate and bowel cancers 

• Average age of contacts: 74; ranging 

43 – 93 years 

• Seventeen of the contacts have been 

self-referral with the rest ranging 

from family referral to Police 

Community Support Officer referral 

• The most common reason for 

contacting an agent has been a need 

for home or practical help. Other 

reasons for contact include 

help/support with benefits and 

transport and requests for 

information about respite care and 

support groups 

• The numbers of pre and post contact 

local evaluation questionnaires 

received have not been sufficient to 

draw conclusions about the impact of 

the VA service in addressing the 

needs of those living with and 

beyond cancer, however local 

evaluation is ongoing and will be 

assessed once sufficient evaluation 

questionnaires have been received.

How are clients referred to a Village Agent 

Living with and beyond cancer: The improvement story so far | 23


Assessment and signposting


Next steps 

• Continue to collect data to evaluate 

service 

• Liaison with GPs to raise the profile 

of this initiative 

• Continued publicity of this initiative. 

Contact 

Sarah Dryden 


Gloucestershire Survivorship Project 

sarah.dryden@glos.nhs.uk 

Fran Callen 


Gloucestershire Survivorship Project 

fran.callen@glos.nhs.uk


Guy’s and St Thomas’ NHS Foundation Trust 

Surviving cancer living life – a nurse led telephone 

service for breast and prostate cancer survivors 

Pfizer Health Solutions 

Guy’s and St Thomas’ 

NHS Foundation Trust 

NHS 

Summary 

Surviving Cancer Living Life (SCLL) is a 

telephone based support service 

launched by Guy’s and St Thomas’ NHS 

Foundation Trust (GSTT) in May 2008. 

This pilot service is offered to people 

who have recently finished active 

treatment (surgery, radiotherapy, 

chemotherapy) for breast or prostate 

cancer, that received any part of their 

treatment at these hospitals. 

SCLL is run by the Trust in partnership 

with Pfizer Health Solutions (PHS), 

financially supported by Guy’s and St 

Thomas’ Charity. By May 2010 over 

570 breast and prostate cancer patients 

have used the service and it has been 

extremely well received. 

Two experienced cancer nurses referred 

to as care managers give personalised 

telephone-based support. This holistic 

service uses the concepts of 

motivational interviewing and health 

coaching to help people to: 

• Better understand factors that affect 

their health 

• Build confidence and skills to cope 

with, and overcome, the anxiety of 

living life after cancer 

• Acquire the skills, knowledge and 

habits in order to remain fit and 

healthy 

• Follow their treatment programmes 

correctly 

• Understand how to engage with, and 

use, local NHS, social and voluntary 

services more effectively. 

Following an initial assessment, the 

patient and the care manager identify 

priorities and and develop an individual 

care plan, focusing on the areas of 

greatest need. Telephone calls are 

planned, usually starting fortnightly, 

before moving to monthly. Patients 

usually access the service for between 

six and nine months. 


• The steering group, formed in the 

autumn of 2007, consisted of staff 

from GSTT, PHS and King’s College 

London (KCL), identified a lack of 

support for cancer survivors 

• PHS had already developed a 

telephone-based support service for 

people with chronic conditions such 

as COPD and were interested in 

developing the model to include 

cancer patients 

• It was decided to pilot this telephonebased 

support service with breast and 

prostate cancer patients as they are a 

large patient group of both sexes. 

What was done 

Project Scoping 

In October 2007 the two main parties 

GSTT and PHS agreed to pilot a 

telephone service, with Kings College 

London to evaluate the service. 

Contracts were signed off. 

Development phase 

December 2007 – May 2008 

• Steering group set up with 

representatives from all organisations 

and the project plan signed off 

• Evaluation meetings, project working 

group meetings and meetings with 

various stakeholders also took place 

regularly during the development 

phase 

• Barriers and challenges at this point 

included recruiting the care managers 

(band 7 oncology nurses) and 

integrating the Trust IT system and a 

new PHS software system to record 

patient’s details and care plans 

• The care managers five week 

training programme included 

motivational interviewing, advanced 

communications, detailed sessions on 

the role of the care manager and IT 

system training


• Development of the documentation 

for care managers including letters, 

information prescriptions and patient 

care books to be sent to patients 

offered the service. 

Implementation phase 

• The service went live with the first 

patient enrolled on 27 May 2008 as 

planned 

• The initial few weeks were chaotic 

with staff, IT and all the referral 

processes to and from the service 

having to work together. Meetings 

with stakeholders ironed out issues as 

they arose. 

Clinical model review 

• We are currently extending the 

service to include all Breast cancer 

patients treated at Kings College 

Hospital 

• The service was originally openended 

lasting as long as the patients 

needed it. In the review it was 

decided to implement a six to nine 

months time-limited service 

benefitting patients in setting the 

expectation of the service from the 

beginning and allowing care 

managers to structure their care 

planning accordingly 

• Care managers became stricter with 

patients who were unavailable for 

their planned calls reminding them of 

the importance of keeping 

appointments and to reschedule if 

needed. Levels of unsuccessful calls 

have since improved 

• GSTT’s health psychologist reviewed 

the documentation used and gave 

advice about ways to improve the 

uptake of black and minority ethnic 

groups 

• The care books are now printed in A5 

following feedback from patients and 

half the original size A4 

• Ongoing service evaluation was 

initiated in Aug 2009. The 

questionnaire from KCL has been 

slightly amended. Care managers send 

these to patients when they first signup 

and when they ‘graduate’ from the 

service at approximately six to nine 

month with a satisfaction survey 

• Referral into SCLL service: 

Implementation of ‘End of Treatment 

Consultations’. Since March 2010 

these consultations have been 

offered to patients that have 

completed their active treatment in 

hospital. The SCLL service is one of 

the follow up support services offered 

to patients 

• Monthly meetings between the 

breast clinical nurse specialists and 

the care managers have been 

established. 



• The service is being evaluated by KCL 

and PHS to determine the impact on 

patients’ quality of life, psychosocial 

and informational unmet needs, their 

return to work, utilisation of 

healthcare services and the 

acceptability of a telephone-based 

support service 

• The results from the initial qualitative 

research were extremely positive and 

patients felt the service answered a 

deep felt need for support at a time 

when they felt particularly vulnerable 

• The service has helped patients to 

understand their illness and its 

treatment better, to improve their 

morale and face life with new 

confidence, often to adopt necessary 

changes in lifestyle and in some cases 

to develop better relationships with 

their families and increase their 

personal confidence when dealing 

with other health professionals. 


• The private and public collaboration 

between Guy’s and St Thomas’ and 

Pfizer Health Solutions has worked 

well 

• Earlier and more extensive clinical 

engagement with breast and prostate 

cancer teams would have been 

beneficial in integrating the service 

with the existing pathway 

• The SCLL service is not suitable or 

necessary for all patients and 

suggests a more tailored approach 

based on needs may be more 

appropriate 

• Enthusiastic steering group members 

have helped maintain the momentum 

for the project. 

Next steps 

• In the immediate future we are 

working on how best to integrate 

Surviving Cancer, Living Life with 

mainstream cancer services to ensure 

effective working relationships and 

maximize potential to enhance 

patient care following treatment 

• Quantitative results from the 

evaluation should be available 

autumn 2010 

• The follow up pathway for breast 

cancer patients at GSTT has recently 

been revised, reducing follow up 

appointments over five years from 

nine to six visits. Further work to 

incorporate a supported self 

management model is being 

explored 

• Financial evaluation of the service will 

take place summer 2010. 

Contact 

Jannike Nordlund 


Jannike.nordlund@gstt.nhs.uk


Three Counties Cancer Network (3CCN) - Herefordshire 

‘Life After the Prostate’ group education programme 

for stable prostate cancer patients 

Summary 

Herefordshire is one of the three 

counties within the 3 Counties Cancer 

Network (with Gloucestershire and 

Worcestershire). This rural county has a 

population of 180,000 people served 

by Hereford County Hospital. The 

urology service at the hospital currently 

sees approximately 200 new cases of 

prostate cancer each year. An 

information course consisting of four 

sessions in a group setting was 

developed to replace the ongoing 

yearly clinical follow up for stable 

patients and ongoing monitoring of 

PSA at GP surgeries. 

The issues 

Members of the clinical urology team 

believed that some patients with stable 

prostate cancer were receiving ongoing 

yearly follow up at the hospital when a 

‘non-medical’ intervention may have 

been more appropriate. It was also felt 

that some patients were discharged 

without being fully informed on topics 

that were of concern to them, and 

unaware of what, if anything, would 

‘happen next’. 

Current prostate cancer follow up pathway - Herefordshire 

Timeline 

Diagnostic 

treatment 

pathway 

Follow up 

pathway 

begins 

Surgical 

treatment 

completed 

Radiotx 

treatment 

completed 

Hormone 

responsive 

6 weeks 6 months 

Urology 

follow up 

with doctor 

Oncology 

follow up 


/CNS 

At any point along these pathways, patients 

with unstable PSA/SI return for reassessment 

6 monthly 

follow up 

with CNS 

6 monthly 

follow up 


6 monthly 

follow up 


3 years 5 years Ad 

infinitum 

Long-term 

monitoring 

plan 

Long-term 

monitoring 

plan 

Proposed prostate cancer follow up pathway - Herefordshire 

Timeline 

NEW PATHWAY 

Follow up 

pathway 

begins 

CURRENT PATHWAY 

6 weeks 6 months 

Annual community 

follow up with GP 

(PSA tested) 

6 month 

Annual 

3 years 5 years Ad 

infinitum 

What was done 

• Project steering group was set up in 

Hereford in April 2009 including 

representation from users 

• A half day process mapping event to 

map out the current patient pathway 

for patients with stable prostate 

cancer and design an altered 

pathway that reflected the proposed 

change in follow up provision with 

the introduction of the Life After 

Prostate information programme 

Diagnostic 

treatment 

pathway 

Surgical 

treatment 

completed 

Radiotx 

treatment 

completed 

Hormone 

responsive 

Urology 

follow up 


Oncology 

follow up 


/CNS 

Assessment 

for group 

programme 

Assessment 

for group 

programme 

At any point along these pathways, patients 

with unstable PSA/SI return for reassessment 

Group 

programme 

Current 

pathway 

Group 

programme 

Current 

pathway 

6 monthly 

follow up 


Group 

programme 

(4 weekly 

sessions) 

6 monthly 

follow up 


Long-term 

monitoring 

plan 

6 month follow up 

Group sessions 

Annual community 

follow up with GP 

(PSA tested) 

6 month 

Annual


• Seven Key Performance Indicators 

(KPI’s), and evaluation methods were 

agreed across the 3CCN. These were: 

patient experience, distress, perceived 

control, financial impact, information 

needs, quality of life and patient 

numbers 

• An outcome questionnaire was 

developed to evaluate against the 

KPI’s 

• Development of a four week group 

programme containing sessions on 

clinical, emotional and practical issues 

which particularly affect those with 

prostate cancer, delivered by a clinical 

psychologist, urology clinical nurse 

specialist and physiotherapist in a 

community setting. 

• Information leaflets disseminated 

widely, to encourage awareness of 

the group programme and selfreferrals 

• A referral pathway was set up and 

patients were referred from the two 

urology clinical nurse specialists’ 

clinics at the County Hospital to the 

project coordinator 

• Patient holistic assessments were 

made using the distress thermometer 

(D/T) by the project coordinator in a 

community setting to support 

recruitment to the programme. 

Course components 

• Clinical overview of prostate 


• Physical and psychological 

impact of prostate cancer on 

individuals 

• Exercise and pelvic floor exercises 

• Fatigue and energy management 

• Healthy eating 

• Distress, motivation and 

relaxation techniques 

• Pattern for life 


work made 

From January to May 2010, three Life 

After Prostate groups were held. 

Eighteen patients attended the groups 

from a total of 42 referrals. This 

attendance rate of over 40% (from 

referral to attendance) was very 

encouraging when compared with 

other group programmes nationally. 

There were 12 completed pre and postgroup 

outcome questionnaires 

returned. The questionnaire data 

revealed: 

• Lower anxiety and depression scores 

following attendance at the group 

programme 

• No change in perceived control over 

condition following attendance 

• No change in quality of life following 

attendance. 

Other notable findings from the course: 

• Patients described how the course 

came at a time when they were ready 

for more information 

‘On the whole I thought the course 

was well organised and very 

informative’ 

• Some had lived with the diagnosis 

and after-effects of treatment for a 

considerable time and had come to 

terms with certain issues, so felt that 

they were now in a position to ask 

more suitable questions 

• Self-reported understanding of 

prostate cancer and treatment 

increased and patients felt that they 

had more opportunity to ask 

questions in an open and less timelimited 

atmosphere than at a formal 

follow up: 

’This course has helped tremendously 

in enabling me to understand the 

side effects of radiotherapy and I am 

very grateful for the chance to 

attend’ 

• However, there have been difficulties 

in getting specialists on board to 

deliver the programme 

• Some patients also reported difficulty 

in completing the outcome 

questionnaire because of confusion 

over pre-existing medical conditions 

(e.g. diabetes) 

• All of the participants in the second 

group said they would be interested 

in forming a support group in the 

future. 


• Attendance rates at the groups have 

been exceptionally high (91.66%) 

with 17 of the 18 men completing 

the programme. This suggests that 

the men valued the course but also 

that there is a real need for this kind 

of group education programme 

• Both the staff delivering the 

programme and patients have 

recognised how difficult it is for the 

patients to make fundamental and 

lasting changes in their lives and how 

important it is that this should be 

communicated in the groups 

• Use of a 3-D anatomical model of the 

pelvis has been invaluable for group 

members in being able to understand 

the prostate in relation to the rest of 

the body and has also helped the 

staff deliver their teaching effectively 

• The financial section has been 

regarded as the weakest section of 

the programme by patients but has 

been seen as beneficial in increasing 

awareness about where to seek 

correct information if it were needed


• Staff felt that there was a need for 

the clinical session to be led by a CNS 

to ensure expert advice was given 

• Flexibility with the number of courses 

was needed. Back to back groups 

were initially programmed, but, due 

to a lower number of referrals than 

expected, two groups were cancelled 

• The use of the Distress Thermometer 

has proved to be effective, with every 

participant completing a DT at the 

beginning of the initial interview with 

the project coordinator, to clarify the 

needs of each patient 

• Herefordshire is sparsely populated 

and lack of transport links remains a 

problem for those wishing to attend 

courses. 

Next steps 

• The project continues recruiting 

patients and delivering the group 

programme with the intention of 

seeking further funding for the 

continuation of this initiative. 

• To offer the course in other venues in 

the community and close to patients’ 

homes. 

Contact 

Rose Davies 

Project Co-ordinator 

rose.davies@herefordpct.nhs.uk


Luton Community Services 

Improving care for patients at home immediately 

following radical radiotherapy treatment 

Summary 

• NHS Luton has an ethnically diverse 

population of approximately 200,000 

people. Secondary care services are 

provided by Luton and Dunstable 

Hospital and tertiary services at 

Mount Vernon Hospital 

• NHS Luton Community Services 

provides support to patients in their 

homes during and after treatment for 

cancer via a primary care based 

oncology cancer nurse specialist 

(1°CNS) who is also an independent 

prescriber 

• The project has tested whether 

assessing pelvic radiotherapy urology 

patients at home immediately post 

treatment improves their experience 

• Early indications suggest that testing 

has delivered an improved patient 

experience and earlier identification 

and treatment of distressing 

side-effects. 


• The six week period between 

completion of radical pelvic 

radiotherapy treatment at the tertiary 

centre and the first follow up 

appointment at their local hospital 

was identified as being an extremely 

distressing time for patients 

• Health professionals reported that 

patients attended outpatients six 

weeks following completion of 

treatment with a number of 

unresolved and distressing symptoms 

• Patients told us there was limited 

support and lack of information on 

the side-effects of treatment and lack 

of clarity of who to contact for advice 

and support. 

‘I completed my radiotherapy and was left in limbo… 

I didn’t know who to turn to for advice, the call from 

the primary care oncology nurse was a relief. She 

supported me through the difficult symptoms which 

was tremendous. I know I would have ended up in 

A&E if it hadn’t have been for her prescribing the right 

medication and giving me the support I needed’. 

What was done 

Following the baseline process mapping 

event involving patients, it was agreed 

that the 1°CNS would make contact 

and assess all pelvic urology patients on 

completion of their primary radical 

radiotherapy treatment To achieve this 

the following processes were 

introduced: 

• Patients were identified at the routine 

urology MDT by the urology CNS and 

details faxed to the 1°CNS marked 

‘NCSI project’ 

Three main 

issues identified 

PHYSICAL 

EMOTIONAL 

• Patients details were entered on to a 

‘tracking’ excel spreadsheet 

• The oncology secretary at Mount 

Vernon Cancer Centre was contacted 

approximately eight weeks later for 

an expected start and end of 

treatment date 

• On completion of treatment patients 

were telephoned by the 1°CNS to 

arrange a home visit 

• Patients were assessed holistically 

using the PEPSI-COLA assessment 

tool. 

Holistic assessment using the PEPSI-COLA assessment tool 

Primary care oncology CNS holistic assessment 

using PEPSI-COLA assessment tool 

Symptom 

management 

Nursing care 

Use of distress 

Independent 

prescribing 

Refer to additional 

nursing/social support 

Score 0-7 

CNS support 

Score 7-10 

Discuss/refer to psychologist 

INFORMATION 

Additional information 

required to understand 

Information 

prescriptions


• The assessment and care plan was 

uploaded onto an IT system 

accessible to the primary health care 

team 

• Any unresolved problems identified 

within primary care during this period 

were communicated by phone to the 

hospital based urology support nurse 

prior to the patients follow up 

appointment. 

Baseline measures and results 

• A total of 24 patients have received 

an assessment of needs within six 

weeks of completing treatment. 

Twenty patients were seen in person 

and four had their needs discussed by 

telephone, pre and post intervention 

Distress Thermometer (DT) scores. 

• The average holistic assessment using 

the PepsiCola aide memoir took 30 

minutes to complete 

• Picker ‘Experience of Care’ 

questionnaire focusing on experience 

of care measures was completed. 

Testing so far has identified the 

following improvements to the patient 

experience: 

• The optimum time for initial 

telephone contact is about three to 

four days following completion of 

treatment followed by a full holistic 

assessment in the patient home 

within two weeks 

• 75% of patients at the time of 

assessment were helped with 

difficulties associated with change of 

bowel habits 

• Earlier symptom management 

avoided patient’s symptoms 

becoming more complex and 

distressing 

Distress Thermometer scores pre and post holistic assessment 

DT Score 

12 

10 

8 

6 

4 

2 

0 

1 

DT score pre-intervention 

2 3 4 5 6 7 8 9 10 11 12 13 14 

Patients 

• Prescribing appropriately and giving 

expert oncology advice at the time of 

the assessment. 85% of patients 

required additional prescribing of 

medication due to side-effects of 

treatment and this twice avoided 

hospital admission through A&E 

• Earlier onward referral to additional 

primary care services. 40% of 

patients required additional support 

from other community services e.g. 

additional nursing support 

DT score post-intervention 

• Providing emotional support, a 

contact number and information for 

patients within primary care has 

reduced patient and carer anxiety. 

The majority of patients were 

unaware that primary care services 

existed 

• Identification of the specific 

educational needs of health care 

professionals in supporting all types 

of patients following pelvic 

radiotherapy. 

‘Why can’t we all have a little ‘talk’ at the end of our 

treatment so we know what might happen and how to 

deal with problems/symptoms if we do get them I can 

assure you that I’d rather know what might happen 

that have no information at all’



• Assessment can be managed face to 

face or indirectly i.e. via the 

telephone but is dependant on the 

competencies of the practitioner 

• The importance of developing a care 

pathway based on patient needs and 

not the organisations 

• The development of a supportive and 

knowledgeable infrastructure in 

primary care is essential when 

addressing the management of 

treatment side-effects, admission 

avoidance and improved patient 

experience 

• The use of recognised referral 

paperwork ensured patients fitted 

into existing referral pathways from 

secondary into primary care 

• Where services are dependent on a 

lone CNS within the specialty, when 

they are absent the system becomes 

unstable 

• The project could only focus on one 

PCT which had the infrastructure and 

contracting arrangements to support 

oncology patients in primary care. 

This caused logistical problems and 

restricted the number of patients 

who could benefit from the service 

• The tracking system is time 

consuming and unreliable and a 

more robust system needs to be 

adopted for longer term use. 

Discussions are underway to see if a 

flagging system can be created using 

current IT systems. 

Next steps 

The primary care oncology service will: 

• Develop clearer pathways that 

integrate this service for all pelvic 

urology radiotherapy patients 

immediately post treatment 

• To explore other pelvic urology 

pathways in particular the prostate 

pathway and the feasibility of risk 

stratifying patients into a changed 

model involving primary care, selfcare 

management, and rapid access 

back into the system when 

appropriate 

• Development of an ‘aftercare’ pack 

that provides patients and health 

professionals with information on 

how to manage symptoms 

• To coordinate the second Picker 

‘Experience of Care’ survey to learn 

whether the change in practice has 

improved the patient experience 

• To ensure the lessons learnt from the 

testing are incorporated into the 

established primary care oncology 

education programme. 

Contact 

Sue Semper 

Primary Care Survivorship Lead 

suesemper@nhs.net


NHS Luton 

Increasing primary care skills and knowledge has 

reduced length of stay, unnecessary appointments and 

admissions to hospital for patients with cancer 

Summary 

• An education programme for 

professionals has been developed to 

support the provision of an oncology 

service in primary care and improve 

the quality of care for patients during 

and after treatment for cancer 

• The programme offers a range of 

learning events for GPs, district 

nurses and other health and social 

care staff covering a wide range of 

topics, and enhances the knowledge 

of community practitioners and their 

confidence to support cancer patients 

following treatment 

• The education programme was 

established prior to this project and 

has enabled the testing of primary 

care led services. 

The Problem 

• NHS Luton identified that patients 

were admitted and experienced 

extended stays in hospital in order to 

receive treatment for their cancer or 

the side effects of treatment 

• The community based palliative care 

team used agreed criteria for referral 

to their service however lacked 

capacity and skills to manage patients 

earlier in their journey as resources 

were targeted at those nearing the 

end of life 

• The district nursing teams felt they 

lacked the knowledge and skills to 

care for these patients (e.g. with 

venous lines, neutropaenia, nausea 

and vomiting etc) resulting in delayed 

discharges, unnecessary emergency 

admissions or GP appointments 

• To address the above problems, NHS 

Luton seconded one team member to 

complete their ENB 237 to act as a 

resource in providing knowledge and 

advice within the specialist palliative 

care team and to other primary care 

based health professionals 

• It was quickly identified that the new 

skills of the individual were not 

optimised as she remained part of 

the palliative care service 

• Access to this new knowledge and 

skill was limited to the individuals 

availability 

• It did not provide a sustainable 

solution for an oncology service. 

What was done 

The service was re-designed to include 

the following: 

• A primary care oncology service to 

provide care for patients with any 

tumour type on a curative pathways 

supporting all types of treatment 

• An agreed operational policy and 

referral criteria 

• An ongoing training programme 

tailored to the needs of primary care 

staff to enable more patients to be 

cared for at home. 

The training programme collaboratively 

works with the acute and independent 

sector and is open to all health and 

social care professionals within the 

cancer network. The programme 

delivers 14 workshops coordinated by 

the Macmillan Lecturer Practitioner 

within NHS Luton Community Services. 

Training sessions pertaining specifically 

to oncology include: 

• Introduction to oncology and 

treatments – one day course run by 

specialist nurses, AHPs and doctors x 

two per year. Content includes: ’what 

is cancer’, staging treatments and 

side-effects the cancer pathway from 

awareness to survivorship, ongoing 

surveillance, and oncology 

emergencies. Each workshop focuses 

on a different tumour group with 

research and latest management 

• Oncology emergencies content 

includes – awareness, signs and 

symptoms of neutropaenia, 

hypercalcaemia, supra vena cava 

obstruction, intestinal obstruction 

and haemorrhage 

• The management of central venous 

devices for long term 

haematology/oncology treatment 

content includes – anatomy and 

physiology, position of lines, 

management and safe practice. 

A variety of delivery mechanisms were 

agreed and tested and included 

sessions for out of hours teams, ‘lunch 

and learn’ sessions for community staff 

and evening and Saturday session for 

GPs on topics requested by them such 

as Neutropaenia, local research trials, 

oncology drugs, oncology emergencies. 

Training is held mainly in health centres 

or other venues as long as they are 

free! 

All sessions attract CPD points and any 

practical skills training is accredited 

when competence is reached. 

What difference has the education 

programme made 

Quality 

• Central lines are now inserted in 

outpatients rather than on the wards 

with referral direct to district nurses 

for line management etc. which has 

saved approximately 550 hospital 

visits during ’2008-09 for regular line 

flushes and associated travel/parking 

costs, and reduced the risk of 

hospital acquired infection


• Availability of 24/7 district nurse 

service supporting patients with 

central lines in the community. The 

number of primary care practitioners 

with skills to support central lines has 

increased from 10 to 50 

• Availability of primary care key 

worker for patients following 

completion of treatment 

• Knowledge and skills is now 

standardised across professional 

groups 

• Improved working relationships 

across primary and secondary care 

teams. 

Innovation 

• A continuous programme of 

oncology training for all health and 

social care teams providing support 

for core learning and ability to 

respond flexibly to specific training 

needs 

• Major shift of services from 

secondary to primary care. 

Productivity 

• During ’2008-09 there were approx 

30 appropriate hospital aversions 

achieved by managing their changing 

conditions within primary care 

• During ’2008-09 approx 550 

outpatient attendances at the 

chemotherapy unit were saved by 

providing central line management in 

primary care. 


• The regular review of the education 

programme has ensured it continually 

meets the needs of providers 

• Building flexibility into the training 

programme has encouraged 

attendance and learning 

• Providing the opportunity for 

secondary care and primary care 

colleagues to meet and share 

learning, through the primary care 

oncology CNS, has helped build 

relationships and trust 

• Changing workforce requires a rolling 

programme of learning not just a one 

off training event 

• Resistance to change in practice 

identified 

• within secondary care with 

reluctance to refer and the 

tendency for repeated requests for 

secondary care follow up, even for 

simple symptoms, rather than refer 

to primary care team remains an 

issue for some 

• from some district nurses where 

concerns had to be overcome 

regarding litigation issues, fear and 

willingness to learn new skills 

• The need for a clearly defined 

pathway for both curative and 

palliative patients supported by an 

operational policy and clear criteria 

for referral 

• An oncology nurse with prescribing 

skills offers even further savings in 

GP/OP visit for patients. 

Next steps 

• Extend training programme to cover 

assessment for cancer survivorship 

along with information to health care 

practitioners on local services 

available and how to access them 

• Arrange a cancer oncology event 

with focus on survivorship 

• To undertake an economic evaluation 

to determine the opportunities and 

benefits of a fully funded primary 

care led oncology service for all 

cancer patients 

• To be at the forefront of any 

developments of the acute oncology 

services and the transition of services 

to primary care 

• To ensure the care of patients living 

with and beyond their diagnosis of 

cancer is part of any service redesign. 

Contact 

Sue Semper 

Primary Care Survivorship Lead 

suesemper@nhs.net


Medway Test Community 

Community cancer support and information service 

Summary 

The NHS Medway Living With and 

Beyond Cancer project involving NHS 

Medway, Kent and Medway Cancer 

Network, Macmillan Cancer Support, 

Medway NHS Foundation Trust and 

Medway cancer patients has focused 

on four main projects: 

1. A support and sign posting service 

for people living with and beyond 


2. Living Your Life Project supported by 

The Sunlight Development Trust 

3. Holistic Needs Assessment (HNA) 

4. Medway Cancer Welfare Benefits 

service. 

These initiatives arose from a 

stakeholder event held in December 

2008 with patients, carers and 

professionals to discuss the current 

service and possible future 

developments. 

Issues identified 

• The need to improve the posttreatment 

care pathway so those 

affected by cancer know what to 

expect 

• The need be clear about support 

options available (NHS, social care 

and voluntary) so those that need to 

can access 

• Existing support groups are very 

valuable to people living with and 

beyond cancer. There is a need to 

find ways of offering groups that 

cater for a wider range of cancers 

circumstances 

• To ensure the differing needs of 

carers and patients are met 

• To provide ongoing support from 

professionals and peers. 

The words and feelings of individuals at 

the event are captured in the, ‘word 

cloud’ below. 

What was done 

In response to this event a Medway 

Living With and Beyond Cancer project 

Board (LWBC) was established and the 

following actions agreed: 

• To develop a support and sign 

posting service that could 

undertake/review HNAs at the end of 

active treatment to meet patients 

individual needs 

• To support the development of a 

patient led support service in the 

community, developed by and for 

people who are living with and 

beyond cancer 

• To undertake patient interviews to 

identify service gaps, pilot HNA and 

care planning tools 

• To develop a cancer welfare benefits 

service in partnership with NHS 

Medway, Medway Council and 

Macmillan. 

Living With and Beyond Cancer ‘word cloud’ - ‘What people affected by cancer 

told us at Medway the stakeholder event (created using www.wordle.net)


Support and signposting service 

• A working group including three 

patients, commissioners, CNS’s, social 

workers and primary care was 

established 

• A service specification for a support 

and signposting service was 

developed and agreed with the PCT, 

however, funding to support this was 

not secured. A subsequent funding 

bid to Macmillan was successful and 

we have been able to incorporate the 

support and signposting service into 

the hospital cancer information 

service. This included the recruitment 

of a signposting and information 

manager. 

Living your life project - Sunlight 

Development Trust (SDT) 

• Peer support was seen as essential for 

patient’s wellbeing and the PCT 

commissioned the SDT to test the 

development of a community based 

support group and help to reduce the 

need and dependency on the health 

service 

• The group meetings became a 

regular occurrence and were initially 

well attended 

• The group developed marketing 

materials and made regular radio 

broadcasts through SDT’s own radio 

station 

• The group came to an end in April 

2010 due to difficulties forming a 

constitution and recruiting and 

retaining new members. 

Development of a Medway Cancer 

Welfare Benefits Service 

• Group established to take forward 

the issues and concerns around 

timely advice and support on benefits 

• Macmillan has provided funding to 

test and link current welfare rights 

service in Medway to additional 

specialist advice and support capacity 

at the time of diagnosis 

Pilot Holistic Needs Assessment 

(HNA) 

• Initially, patients who had undergone 

recent chemotherapy, surgery or 

bone marrow transplant were 

interviewed by staff to learn about 

their experience and identify service 

improvements 

• To address the issues raised by 

patients, a health needs assessment 

using the distress thermometer was 

tested within chemotherapy and 

inpatients following diagnosis. 

Learning 


• Excellent partnership working has 

been established, and thinking is 

changing as to whether this service 

could be a viable alternative to 

follow-up. 

Living your life project: SDT 

• Enthusiasm and commitment to 

support group was high but this did 

not result in the patients themselves 

being able to take on full 

responsibility of sustaining the group 

through a constitution. 



• Challenges that have been overcome 

• Establishing three way partnership 

working between Macmillan the 

PCT and the Local Authority (LA) 

• Setting the principles of joint 

collaboration between the PCT and 

the Local Authority. 

Pilot Holistic Needs Assessment 

(HNA) 

• Testing has identified knowledge 

gaps especially around psychological 

distress through using the distress 

thermometer. This has led to specific 

training of professionals led by a 

psychologist. 

Next steps 


and HNA 

• To seek further funding to 

incorporate the health needs 


following completion of treatment as 

part of this project. 

Living your life project: SDT 

• As this group is no longer in 

existence, looking to the ‘Health and 

Lifestyle Team’ to pick up the group 

and peer support to provide a higher 

degree of support, coaching, 

motivational therapy and practical 

support. 



• The service will commence in the 

next few months with ongoing 

evaluation and monitor ring of 

perceived benefits and if successful 

both the PCT and LA have committed 

to provide ongoing funding. 

Contact 

Dave Weaver 

Head of Planned Care and Cancer 

Commissioning 

dave.weaver@medwaypct.nhs.uk


Mount Vernon Cancer Centre 

Identifying the potential to reduce hospital follow ups 

Summary 

The Mount Vernon Hospital head and 

neck team run a weekly combined ‘one 

stop’ clinic where patients can meet 

with a range of health professionals at 

one appointment rather than returning 

to hospital several times. At the clinic, 

they can meet with their surgeon, 

oncologist, cancer nurse specialist, 

speech and language therapist (SALT) 

and dietician. 


With the increasing demand on 

capacity we wanted to identify if there 

was a particular group (and if so what 

percentage) of patients who could be 

discharged to their GP instead of 

continuing with follow up 

appointments at the cancer centre. 

What was done 

During December 2009 and January 

2010, doctors at the weekly combined 

head and neck clinic were given an 

audit form to complete when they met 

with their patients. This form asked for 

data re: patients diagnosis, type of 

treatment received, year treatment 

completed and if the doctor felt the 

patient was suitable to be discharged 

to their GP with appropriate support, 

information and fast access back into 

the combined clinic if requested. The 

form also asked if the patient had been 

given a future follow up appointment 

at the combined clinic, and if so, when 

and why was this Was it for for 

surveillance, investigation, morbidities, 

reassurance, needs to see SALT or 

dietician or other (e.g. protocol / 

routine). The form also asked if the 

patient relapsed, was there still a 

‘salvage’ treatment option available. 



The audit has shown that there is a 

particular group of patients who, with 

the correct information and appropriate 

support could be discharged much 

sooner than they would under the 

current protocol. The patients identified 

for discharge to GP all appear to have 

cancers of the oropharynx (i.e. front of 

the mouth) so it is not necessary to 

review the larynx with a scope to detect 

recurrence. 

A total of 92 (usable) forms were 

completed that could be analysed. Of 

these, 25 (27%) said that the patient 

was suitable to be discharged to their 

GP. 14 of these 25 patients had 

completed their cancer treatment 

between 2007 – 2009. If they were to 

be discharged now to their GPs, it 

would be considerably sooner than the 

current protocol of five years post 

treatment hospital follow up 

appointments for head and neck 

cancer patients. 


The whole audit process was more time 

consuming than we first thought it 

would be. All the doctors in clinic were 

positive about and willing to participate 

in the audit. However, it is an extremely 

busy clinic and it was quite a challenge 

to get as many forms as possible 

completed. 

Things that would have helped the 

audit were: 

• To have had a clinic list of patients 

beforehand to complete the basic 

data for each audit form and insert at 

the appropriate place in case notes 

for completion 

• Include more tick boxes to avoid 

issues with handwriting and the need 

to relook at case notes to fill in gaps 

that were not completed by the 

doctors 

• To include on the audit whether, if 

follow up is required, this should be 

by surgeon or oncologist or both. 

Next steps 

To date the findings from this audit 

have been presented to the two 

oncologists for the combined head & 

neck clinic. They will be presented to a 

wider audience when an opportunity 

arises. 

To implement the study findings one 

suggestion is for all patients to have a 

review after two years of follow up. 

A decision could then be made to 

discharge selected patients early after a 

number of factors had been considered 

including tumour site and difficulty of 

surveillance, ongoing morbidity, 

compliance with follow up 

appointments during the preceding 

two years and continued smoking or 

drinking. 

Contact 

Teresa Young 

teresa.young2@nhs.net


Royal Free Hospital & Marie Curie Hospice Hampstead 

Testing a complex intervention focused on a rehabilitative 

model to improve the patient experience and long term 

outcomes for haematology and breast oncology patients 

Project details 

The Royal Free NHS Trust and Marie 

Curie Hospice Hampstead are testing a 

rehabilitation package to those with 

recurrent progressive disease through 

referral to a hospice Day Therapy Unit 

(DTU). The innovative element in this 

model is earlier referral of patients who 

would not normally access a 

rehabilitative approach in a hospice 

DTU. We used a patient centred 

multidisciplinary approach to testing, 

offering a range of supportive services 

to maximise physical and psychological 

function for breast and haematological 

cancer patients. 

Outcomes and measures 

Documented and 

manualised 

Pathway 

mapping 

PDSA 

cycles 

Focus groups 

Develop 

Model of Care 

Improve 

Communication 

GP survey 

RCT 

Improve 

Patient Experience 

Assessment and 

care planning 

framework 

Picker 

Economic 

evaluation 

The aims of the project were: 

1: To develop a model of care that can 

be reproduced in other settings 

2: Improve the patient experience 

3: Improve communication between all 

services. 

This has been undertaken using the 

Plan Do Study Act (PDSA) approach, 

focus groups, questionnaires, process 

mapping and a randomized controlled 

trial (see the diagram on the right). 

Baseline position 

There is a lack of evidence available to 

understand the complex issues 

experienced by patients who have 

active, progressive, recurrent disease. 

These aspects of care are not fully 

addressed by acute oncology and 

haematology services with inadequate 

co-ordination of care for patients with 

complex needs between primary care 

and specialist care, to the detriment of 

patient experience. Data measuring the 

delivery of a complex rehabilitative 

intervention to cancer survivors is 

limited. 

Evidence of successful testing 

Developing the model of care 

(Quality, Innovation and 

Prevention) 

A baseline process mapping exercise 

established defined pathways for each 

department but no clear point for 

referral between the care providers. 

Identifying coordination of care, quality 

of communication and quality of 

information provided to patients aims 

to reduce demand for acute sector 

resources and improve patient care 

experiences. 

We examined and streamlined our 

referral pathway from outpatients to 

the Hospice DTU, to improve efficiency. 

As part of the goal to develop the 

model of care we developed our 


framework which had not been 

evaluated and did not include any self 

assessment form. 

This also impacted on our goals to 

improve the patient experience and 

improve communication. 

To improve the patient 

experience (Quality) 

To improve the quality of patient care 

we also sought to understand the 

experiences of patients attending DTU 

and used this information to inform 

PDSA work and develop interventions. 

There had been no structured feedback 

mechanism to report patient experience 

previously in DTU. Five focus group 

meetings were held with patients from 

the hospice, with a total of 22 

participants. The key questions for each 

group focussed on: referral to DTU; 

initial contact by DTU; services 

available; care planning; information 

given and experiences of DTU.


Improve communication between 

all services (Productivity and 

Quality) 

We aimed to ensure effective 

communication between the service 

providers to enabling a seamless care 

pathway and improving patient 

experience and care. To establish how 

effective GP’s and hospital teams found 

the existing form of communication 

from the hospice we surveyed local GPs 

using ‘Survey Monkey’. 

Findings 

• The generation of a referral pathway 

provided staff with a clear 

framework, but did not help to 

overcome the difficulties of time and 

space to assess patient suitability of 

referral in an outpatient setting. 

Current work is focusing on 

empowering the patients to discuss 

referral 

• The focus group findings 

demonstrated the importance of 

providing information and 

introduction to DTU in patient’s 

pathway. One participant had not 

been informed that he was being 

referred to a hospice but was told 

“…it was another department across 

the road”. There are also issues with 

the media and public image of the 

hospice. Patients experienced 

difficulties in explaining their referral 

to the hospice to friends and family 

due to the connotations with the 

word ‘hospice’. One participant 

strongly expressed ‘…It frightened 

the life out of my friends and family. 

General public needs to know you 

don’t come here just to die. It needs 

to be addressed’ 

• One of the other key themes of the 

focus groups was care planning. All 

participants from the four focus 

groups expressed their involvement in 

planning their care. Feedback from 

the focus groups challenged the 

assumption that professional jargon 

such as ‘care plan’ is understood by 

patients 

• It was difficult to design an 

assessment framework that is 

practical yet records all the relevant 

information. Experienced clinicians 

found that the assessment and care 

plan framework hindered the 

assessment process that they would 

usually undertake using either a 

reflective model or a narrative 

assessment because it was time 

consuming and complex. However it 

was felt that the format might suit a 

less experienced practitioner to guide 

discussion and assessment 

• The evaluation of the self assessment 

form produced very mixed feedback 

from the patients (see table below). 

Evaluation of self assessment forms 

Self assessment form received 

Self assessment forms completed 

Patients who found the self assessment 

form helpful 

Any comments made by the patient 

‘It is helpful to go through this before the appointment’ 

‘Good for focusing thoughts’ 

‘Found it difficult to structure thoughts’ 

‘Needed help filling it in’ 

‘Too tired to complete it’ 

‘Overwhelmed…poor concentration’ 

‘Not sure what it was for’ 


• Joint collaboration between the NHS, 

primary care and voluntary sector 

hospice can support the health and 

wellbeing of patients after their 

cancer treatment. 

Next steps 

The intervention informed by this 

process will be evaluated via a 

randomized controlled trial to start in 

June 2010 titled; An evaluation of a 

complex rehabilitative intervention for 

patients with advanced, progressive, 

recurrent cancer. 

Contact 

Jane Eades 

Clinical Nurse Specialist 

jane.eades@mariecurie.org.uk 

28 Patients 

16 Patients 

7 Yes 

17 Did not know


Sheffield Test Community 

Identifying patient support and information 

needs in survivorship 

Summary 

Sheffield Teaching Hospital NHS 

Foundation Trust have been working in 

breast, haematology and prostate 

cancer to identify information and 

support needs for patients living with 

and beyond cancer. This has been 

achieved using the using the Sheffield 

Profile for Assessment and Referral for 

Care (SPARC) Holistic Needs 

Assessment (HNA) that led to a 

prioritisation exercise within each of the 

three tumour sites to determine which 

service developments will be tested 

within each tumour group. 


Staff were aware that some patients 

had unmet needs therefore, in order to 

inform the development of testing 

ideas, the Identification of patient 

support and information needs became 

imperative to ensure testing was in 

evidenced areas of need. We also learnt 

from the baseline patient experience of 

care questionnaire by Picker that 

patients felt they needed more 

information to support them living with 

and beyond cancer locally. 

What was done 

A disease specific multi-disciplinary 

working group was established as part 

of the project, for each tumour site, 

including four user representatives on 

the breast group, four on the prostate 

group (see photo above) and three in 

haematology. 

The groups developed a patient 

pathway for their tumour and decided 

on the three different points at which 

the SPARC assessments would be 

completed. A total of 90 SPARC 

assessments were completed (10 at 

each point in the pathway across the 

three tumour sites). 

Assessment points in the pathway 

differed for each tumour, as 

determined by the group, based on 

their experiences and clinical expertise 

and when they felt the assessment 

would be most beneficial to the 

patients. These were as follows:- 

Breast Cancer 

SPARC1 - at decision to treat 

SPARC2 - at end of treatment 

SPARC3 - at recurrence or discharge. 

Haematological Cancers 

Myeloma and post bone marrow 

transplant patients: 

SPARC1 - 3 months after treatment 

SPARC2 - 2-5 years after treatment 

SPARC3 - after diagnosis but before 

transplant. 

Intensively treated acute leukaemia, 

high grade non-hodgkins lymphoma 

and hodgkins lymphoma: 

SPARC1 - 3 months after end of 

primary treatment 

SPARC2 - 2-5 years post treatment 

SPARC3 - after diagnosis of relapse or 

refractory disease, but before 

transplant. 

Prostate Cancer 

SPARC1 - in the monitoring/surveillance 

phase 

SPARC2 - post radical treatment 

SPARC3 - at the detection of local 

advanced disease. 

Having completed this exercise we 

went on to conduct a scoping and 

prioritisation exercise within each of the 

three tumour sites based on the the 

outcomes from these assessments. A 

menu of needs was identified for each 

disease group and a simple ranking 

exercise produced a list of those most 

‘important’ to each member and also 

how ‘fixable’ the individual felt that 

need would be to address.


In addition to this, a training 

programme on SPARC HNA was 

provided for relevant staff. This 

included a two hour session for all staff 

undertaking the assessments for the 

project work, delivered by clinicians 

from North Trent Cancer network as 

part of local roll out of HNA across the 

network. Sessions also included project 

staff and user representatives. 



• Increased numbers of users engaged 

and involved in clinical pathway 

development 

• Provided SPARC HNA training for 

relevant staff as part of local roll out 

of HNA across the network 

• Patient information and support 

needs in survivorship have been 

identified and prioritised and a future 

plan for testing developed e.g. breast 

cancer open day 

• Identified some common differences 

in individual patient need between 

different tumour sites e.g. type of 

issues highlighted by prostate 

patients tend to be more physical, 

however, breast and haematology are 

more related to emotional health 

• Identified logistical issues of 

undertaking HNA e.g. length of time 

to undertake varied from five to 

30 minutes in prostate to 30 to 105 

minutes in breast. 


• SPARC HNA training well received by 

staff trained on the whole. Users 

attending training were impressed by 

the thoroughness of the assessment. 

Feedback will inform future sessions 

• Results from SPARC HNAs completed 

showed that the assessments were 

very well received by patients and 

also very useful to guide 

development of models to test 

• Patient information and support 

needs scoping and prioritisation 

exercise valued by all group members 

especially user representatives 

• Logistical issues of undertaking HNA 

assessments needs to be borne in 

mind e.g. variation in time taken 

(ranged from five to 105 minutes) 

and availability of appropriate venue 

in which to undertake e.g. patient 

taken to cancer information and 

support centre to find a confidential 

space 

• Availability of staff from busy rotas to 

undertake training and complete 

assessments extended the 

implementation time, despite 

offering several different 

opportunities for training 

• SPARC training for the project has 

helped to further the HNA 

implementation throughout the 

cancer network. 

Next steps 

• Patients who have been through the 

SPARC HNAs will be invited to 

participate in phase 2 of the Picker 

Experience Survey 

• To test an open day for breast cancer 

patients in partnership with Breast 

Cancer Care and evaluate the 

content, location etc (patients and 

carers invited) 

• HNA training for healthcare 

professionals identified as one of our 

testing models in order to ascertain if 

it is feasible to implement in the 

pathway, the barriers to 

implementation, what supports 

implementation and when to do a 

SPARC assessment 

• To test a haematology post transplant 

rehabilitation programme to ascertain 

whether quality of life, fatigue and 

exercise tolerance can be improved 

with a weekly exercise group for 

myeloma patients post autologous 

stem cell transplant. 

Contacts 

Denise Friend 

Project Manager and Service 

Improvement Facilitator, North Trent 

Cancer Network . 

denise.friend@ntcn.nhs.uk 

Professor Sam Ahmedzai 

Test Site Lead and Professor of 

Palliative Medicine, Academic Unit 

of Supportive Care, School of 

Medicine and Biomedical Sciences, 

University of Sheffield 

pallmed@sheffield.ac.uk


NHS South of Tyne and Wear 

Interim evaluation of participant’s experience of the 

health and lifestyle coaching programme in 

South of Tyne and Wear 

Project details 

A cognitive behaviour therapy (CBT) 

based six to eight week programme for 

patients within South of Tyne and Wear 

has been designed for patients that 

have finished radical treatment for 

cancer in the last 3-12 months. This 

story describes the process, content 

and evaluation of the first cohort’s 

experience, which achieved excellent 

comments from all attendees. 

To date one full run of the programme 

has been completed with only 4 of the 

possible 10 places filled, all women 

despite being also open to men. The 

women were from aged from 26 years 

and 64 years and from a variety of 

backgrounds and embodied a rich 

variety of experiences. 

The first programme was a very positive 

learning experience for all involved and 

learning has informed the development 

of the programme for the next cohort. 


As patients needs vary post cancer 

treatment, especially psychologically, a 

CBT model is being tested to help 

patients to move on. The programme 

was developed to test if, during the 

transition from cancer patient to cancer 

survivor, a health and lifestyle coaching 

programme can help to reduce anxiety, 

motivate people to make lifestyle 

changes and help patients become 

‘people’ again. 

What was done 

Dr Karen Roberts and Dr Sanjay Roa 

designed and developed a CBT based 

six to eight week programme for all 

patients within the South of Tyne and 

Wear area that have completed radical 

treatment for cancer in the last three to 

six months covering: 

• Information prescriptions 

• Staying well – physically and mentally 

• Coping with uncertainty 

• Improving lifestyle including diet, 

reducing alcohol intake, getting fitter 

and smoking cessation 

• Getting back to work and play! 

• The role of family and friends as 

central support. 

The venue chosen was a community 

centre in Bensham, away from health 

care, to support the programme 

philosophy of adaptation, not being 

labelled as being ill or a cancer patient. 



Analysis of data for the first cohort 

shows a very positive experience for 

participants: 

• ‘I just think this programme is really 

helpful and supportive to me and 

hope others will attend these 

programmes in the future’(P1mpQ 1) 

• ‘I would like to think that the funding 

will be given for the programme to 

continue so that other people will be 

able to benefit’ (P1mpQ 2) 

• Some participants also pinpointed 

particular achievements or rewards 

• [since being on the programme] ‘I 

was dead emotionally and now I’m 

not, I just seem to be able to take a 

deep breath and handle things a bit 

easier’ (P2 Int2) 

Bensham Community Centre 

• ‘I’m not maudlin about it [the cancer] 

anymore …I don’t think about having 

cancer everyday and I’m sure its 

because I’m meeting other people 

and the content of the course most 

definitely’ (p1 Int 1). 

However as is perhaps to be expected 

some found particular sessions difficult 

and emotional: 

• ‘I felt that I had moved on very well 

until last week, found the session 

very upsetting’ (P1mpQ 3) 

• ‘I just hope we haven’t got to go 

through uncertainty session again as I 

found that very upsetting and 

traumatic’ (P1mpQ 1). 

There were a few suggestions for 

changes or ‘tweaks’ in the programme 

with one participant highlighting the 

need for greater clarity for potential 

participants regarding programme 

content and what to expect. This 

suggestion has been incorporated into 

the development of posters and flyers 

for the future.



Recruitment issues 

• The first programme only had four 

attendees, all of whom were women 

despite the course offering 10 places 

for men or women. The clinical nurse 

specialists found it challenging to 

identify and recruit patients for the 

programme, compounded by a 

recruitment window initially specified 

as being between three to six months 

after the end of treatment. After 

consideration with the clinical teams 

it was decided that increasing the 

recruitment window to a period from 

three to 12 months after the end of 

treatment as attendees will still 

benefit and this will also increase the 

likelihood of recruiting 10 patients to 

subsequent courses 

• An additional ‘self referral’ 

recruitment path has also been 

approved by the ethics committee as 

an amendment. Posters and leaflets 

have been developed to be 

distributed to clinics, cancer 

information centres and day units; 

these will inform potential 

participants about the programme 

thus adding the option of self 

referral. 

• One outcome from these discussions 

is that some of those attending 

found practicing ‘mindfulness’ 

proved difficult outside of the 

sessions. As a result a CD is being 

developed for the next cohort to use 

as an additional tool. 

Next steps 

• The second run of the programme is 

underway and being held in 

Sunderland Library and Arts Centre 

for eight weeks 

• Recruitment for a third course is 

beginning following further financial 

support from the cancer network to 

support the testing locally. 

Contact 

Sarah Rushbrooke 

Nurse Director, 

North of England Cancer Network 

sarah.rushbrooke@sotw.nhs.uk 

Programme development 

• It was recognised that capturing the 

facilitators’ discussions and 

reflections was important in 

optimising the learning to be gained. 

Thus facilitators began keeping a 

diary after each session to document 

shared reflections, ongoing 

developments in the programme and 

reasons for changes


University College London Hospitals (UCLH) Gynaecological Cancer Centre 

Routine use of the distress thermometer as 

psychological distress screening for outpatient 

gynaecological cancer patients 

Summary 

The survivorship project at UCLH is 

exploring whether the combination of 

prophylactic and early physical and 

psychological intervention improves 

quality of life for patients treated for 

gynaecological cancers. The work has 

focused on the use of the Distress 

Thermometer (DT) at each outpatient 

appointment differing from other 

models of practice where it is used only 

at pre-defined points in the patient 

journey. 

The use of the DT as a rapid screening 

instrument for psychological distress 

has been shown to be valid against 

other commonly used screening tools 

and acceptable to patients. The aim of 

routine use is to improve the quality of 

the medical interview, by signalling to 

the patient that the doctor is willing to 

discuss the wider range of their 

experience beyond the strictly physical; 

by offering prompts to patients to 

disclose physical symptoms that may 

otherwise not be disclosed (e.g. sexual 

difficulties); to offer patients the 

opportunity to talk about their 

difficulties in the consultation and/or to 

direct those with wider difficulties to 

the appropriate area for help e.g. 

clinical nurse specialist (CNS), clinical 

psychologist, community teams etc. 


After an enthusiastic beginning, 

welcomed by CNSs and commented on 

by patients as making them feel valued 

as a whole person, it was found that 

over time patients were completing the 

DT less often. The initial use by junior 

staff ended when their rotations 

changed, and senior staff felt that they 

were covering the physical content in 

their regular interviews. 

New junior staff were not trained on 

entry to the rotation and the 

knowledge gained by earlier SpRs was 

not passed on. This led to the 

perception amongst some clinicians 

that the DT was psychosocial in essence 

and outside their sphere of expertise. 

A survey was conducted of 24 patients’ 

views on the use of the DT and the 

following was identified: 

• Patients were unaware of the aim of 

the DT and why it was used on 

multiple occasions 

• 67% said that the concerns they had 

noted on their distress thermometer 

had not been discussed in the 

consultation, and of these 79% had 

concerns they had hoped to discuss 

with the doctor 

• Of those who had the opportunity to 

discuss their concerns, all found it 

useful. 

What was done 

An education package was developed 

for clinical teams to explain the DT, 

how the process works and can benefit 

the doctor and patient. The MDT coordinator 

produced a highly successful 

‘how-to’ guide for doctors. 

The process was reviewed and now all 

patients attending clinic are given the 

DT to complete prior to seeing the 

doctor. For patients where the score is 

5 or more, the consultant will open a 

discussion in clinic with onward referral 

where necessary. The DT score is 

entered in the MDT record if five or 

over as a ‘case’, the paper copy is 

collected, and the data entered 

manually into a database by the 

assistant psychologist, together with 

outcomes and next steps. 

The patient leaflet explaining the DT 

has been reviewed and amended. 

An electronic version of the DT linked 

directly to a database to reduce manual 

data entry and associated transcription 

errors is now under development. 

Following training, the DT was relaunched 

as a four week pilot focusing 

initially on surgical patients seen in the 

gynaecological oncology clinic. 


work made 

• The consultation discussion has 

changed. Doctors report patients 

talking to them about previously 

undisclosed problems, e.g. about 

physical and emotional late effects of 

treatment in patients who are 

otherwise ‘doing well’ 

• It enables earlier identification of 

physical or psychological needs e.g. 

post treatment distress about 

infertility 

• Continuous monitoring of DT scores 

helps prevent unrecognised 

development of serious problems, 

such as anxiety, depression or major 

social issues 

• Routine screening means that issues 

can be addressed when ‘hot’ rather 

than waiting for moment when 

decided by the healthcare 

professional. The consultant takes an 

active role in addressing all the 

patient’s issues, a role traditionally 

played by the CNS.



• Asking patients to complete their DT 

within busy waiting and reception 

areas has identified issues of privacy, 

poor completion and practical issues 

of ensuring the forms were attached 

to the notes prior to the consultation. 

The revised leaflet together with the 

presence of a volunteer assistant 

psychologist in the clinic has helped. 

However, this is not sustainable long 

term and an alternative process 

needs to be developed 

• The availability of the project lead 

(clinical psychologist) to help assess 

and address severe patient distress in 

clinic has been very helpful, however, 

sustainability, will again be an issue 

• Staff consider the DT should be 

routinely used as a screening tool at 

all outpatient visits. It is not a full 

assessment, but a quick look at what 

is going on with the patient and how 

the patient is coping 

• The purpose of the DT and especially 

the subsequent pathway (i.e. what 

will happen next) needs to be 

constantly re-iterated with staff and 

especially with new clinical rotations. 

clinicians’ computer screens within the 

consultation, together with a graph of 

the patient’s historic DT scores and 

dates of scoring. 

Once the systems and software have 

been established, the protocol and 

systems will be made available to other 

tumour sites within the Trust, and to all 

tumour groups in all units within the 

Cancer Network. 

Contact 

Dr Sue Gessler 

Consultant Clinical Psychologist 

sue.gessler@uclh.nhs.uk 

Next steps 

The Trust actively supports the writing 

of questionnaire software to enable the 

distress thermometer to be 

administered using kiosks for privacy, 

and will shortly pilot this in the same 

outpatient clinic. This will allow 

immediate data collection, avoid 

separate collection of paper forms and 

individual data entry, and directly 

convey the outcome of the DT to


South East Wales Cancer Network 

BeINSPIRED - a non pharmacological breathlessness 

management programme for people with cancer 

Summary 

Within the South East Wales Cancer 

Network, consisting of 1.42 million 

people, a non pharmacological 

breathlessness management 

programme focusing on self 

management has been developed. This 

includes the BeINSPIRED breathlessness 

pathway, screening and assessment 

tools, a handbook and a 

comprehensive education programme. 

Results suggest that this initiative fulfils 

an unmet need for both the person 

with any cancer experiencing 

breathlessness and the workforce who 

are provided with the skills to deliver 

the intervention. 

What are the issues 

Breathlessness is a very common 

problem, occurring in up to 79% of 

people diagnosed with cancer. With 

10,000 people living with cancer in the 

network this means that there are up to 

8,000 people struggling with this life 

limiting symptom. Though there are 

effective clinical treatments, there are 

several strategies which can be 

employed by the person themselves to 

help them manage intractable 

symptoms. A regional survey, 

conducted as part of a mapping 

process, revealed that there is currently 

little access to breathlessness 

management programmes, and those 

that exist are not holistic in that they do 

not encompass all eight domains of 

care which are: 

• physical 

• psychological 

• informational 

• financial 

• practical 

• nutritional 

• spiritual 

• social. 

Breathlessness is a symptom which is 

both under recognised by clinicians as 

well as a burden expected to be 

endured by the person with cancer. An 

audit at the regional cancer centre 

showed that more than 1,000 people 

were admitted with this problem, and 

this evidence, coupled with the results 

of a systematic review, strongly 

suggested that there is a real need for 

such a self management programme. 

BeINSPIRED breathlessness pathway 

What did we do 

An inter-professional group was 

developed meeting monthly to develop 

the pathway and all the resources 

required, such as protocols, patient 

leaflets and the BeINSPIRED Handbook, 

necessary for its implementation. The 

consultant Allied Health Professional 

(AHP) and a specialist physiotherapist 

delivered and tested the pathway 

following the steps outlined below:


The pathway is now in its final form. 

The education programme has been 

delivered to the first cohort and the 

BeINSPIRED Handbook, Calming Hand, 

and Systematic Focussing which 

prepares the body for Self Taught 

Relaxation, are printed and in use. 


work made 

The results show that the ability to self 

manage breathlessness following the 

intervention is reported in the majority 

of people, with a few having more 

complex needs requiring referral to 

specialist care. As at April 2010, 31 

referrals have been received and we’ve 

entered18 patients on the pathway. 

Late intervention (April 2010) 

17% 

83% 

Complex case management 

Non complex case management 

Tumour site of people referred 

Number 

12 

10 

8 

6 

4 

2 

0 

Breast Cervix Tonsil Lung Non 

Hodgkins 

Lymphoma 

The table above shows the tumour site 

of the people referred, illustrating that 

this problem is not confined to lung 

cancer. 

Whilst it is not possible at this time to 

determine the impact upon the health 

service in terms of reduced access, 

qualitative results show the intervention 

to make a real difference to the people 

who participate. 

‘It is nice to have all the 

necessary information in 

one place to hand’ 

‘If only I had known all this 

before’ 

‘All useful-good simple 

basic details that have 

helped my breathing’ 

Rectum Prostate Ovary Pancreas Melanoma Unknown 

‘I couldn’t believe I had 

been struggling so long 

with my breathing and the 

answer was so simple 

once explained’ 

The education programme for health 

professionals to deliver the pathway 

has been submitted to Agored Cymru 

(The Open College Network in England) 

as an approved course. It consists of a 

classroom session, a work book, and 

supervised sessions leading to 

competency. The programme was 

marketed to all directors of nursing in 

the Network, managers of hospices, 

specialist palliative care units (SPCU) 

and GP practice managers in the 

network. The first cohort of seven 

nurses from specialist palliative care 

units and lung cancer specialist nurses 

across the network attended and will 

be undergoing supervised sessions in 

the next few weeks.



The process has developed really well 

due to the exceptional dynamics of the 

working group. There have been a few 

pitfalls such as recruiting both patients 

for the BeINSPIRED Pathway and 

nursing colleagues for the educational 

component. 

The pathway has evolved over the 

project using Plan, Do, Study, Act 

(PDSA) methodology, and is now a true 

reflection of what actually happens. 

The initial arrangement was for clinical 

colleagues to refer patients they 

perceived to be breathless, using the 

modified Borg. However, in practice it 

was revealed that for breathlessness to 

be indentified objectively, it was likely 

to be a major problem and seemed to 

suggest that the end of life was 

approaching. This resulted in many non 

attendances as patients died before 

being seen. Changing the referral 

arrangements and location of clinic 

setting to the patients’ home 

environment, with patients completing 

the Borg as a screening tool, it is now 

possible to see the majority, with just a 

few deaths. We’ve adapted the 

assessment tool ‘Distress Thermometer’ 

to the ‘Bother Score’ to better suit our 

population and the situation. 

Next steps 

The recruitment of patients for the pilot 

will continue until 30 have been seen. 

We aim to rollout the pathway across 

the cancer network. Future application 

has begun as the pathway is 

transferrable to other conditions where 

breathlessness is a symptom e.g COPD; 

cardiac failure. We’ve had interest in 

one Health Board which came about 

after the project was presented to a 

Wales Long Term Conditions 

conference. 

The working group is considering more 

innovative ways to market the 

education programme in the future as 

we would like to recruit nurses from 

the community setting. We aim to 

deliver it to AHPs in September at their 

request. 

We will continue to submit abstracts 

for conferences and are preparing a 

paper for publication to ensure that our 

message is presented as much as 

possible. 

Contact 

Sue Acreman 

Consultant AHP - Cancer Rehabilitation 

sue.acreman@wales.nhs.uk



Implementing a ‘virtual’ non medically led adjuvant 

Herceptin breast cancer pathway 

Summary 

Velindre Cancer Centre (VCC) provides 

non surgical cancer services to a 

population of 1,400,000 in South East 

Wales Cancer Network (SEWCN). This 

equates to over 1,000 new breast 

cancer patients presenting to VCC with 

approximately 200 patients (20%) 

eligible to receive adjuvant Herceptin 

treatment following chemotherapy 

annually. 

The current Herceptin pathway involves 

patients receiving 18 treatments over a 

12 month period. During which time, 

patients receive six MUGA scans to 

monitor cardiac function and attend six 

outpatient appointments (OPA) which 

impacts significantly on capacity. 

Patients told us what they didn’t like: 

‘Waiting times’, ‘seeing a different 

person all the time’, ‘stressful waiting 

for scan results’ and ‘not knowing 

when their appointments were going 

to be’. 

Comparative baseline data collected on 

30 patients who had been through the 

medical model showed: 

• The majority of patients attended 

hospital 12 times during their 

Herceptin treatment 

Baseline costs and potential savings 

Medical pathway 

• The average patient spent 19 minutes 

with consultants and one hour and 

seven minutes waiting in the 

outpatient clinic (total one hour and 

26 minutes) 

• 43% of patient live within five miles 

• Patients travelled an average distance 

of 35 miles taking 54 minutes each 

journey per outpatient appointment 

• Additional journeys required for 

MUGA scans 

• Costs for current and potential 

pathways outlined and potential 

savings identified. 

Non medical pathway 

Postal savings 

Following review and feedback from 

patients, a new non medical Herceptin 

treatment pathway has been designed 

that improves the quality of the service 

and reduces the number of OPA. 

Utilising the skills of a non medical 

prescriber (NMP) and the resources of 

electronic prescribing with telephone 

follow up in a virtual clinic, replaces the 

need for patients to come to hospital 

for follow up and results. 

OPA x 1 @ £178 £178 

OPA x 6 @ £69 £414 

Per patient £592 

X30 patients £17,760.00 

Telephone 

clinic x 3 

@£23 £69 

£69 

£2,070 

OPA 

x 7 

@£69 £592 

£523 

£15,690 

What were the issues 

Clinic capacity issues and waiting times 

are an increasing challenge to 

managers and clinicians in the cancer 

setting within VCC. Patients can 

experience high levels of anxiety and 

stress waiting for test results. The 

current Herceptin pathway has a 

significant impact on both resources 

and capacity at VCC. Many patients 

travel long distances over hours often 

for a 10-15 minute appointment with 

the oncologist.


Mapping of the current and new pathways 

Medical Model 

Six cycles 

of chemo 

prior tp 

Herceptin 

2 

months 

OPA: seen by 

oncologist 

Herceptin 

explained 

MUGA 

requested 

OPA: S/S 

oncologist for 

results and 

given appt to 

start Herceptin 

MUGA requested 

3 

months 

X4 

until 18 

treatments 

completed 

3 

months 

MUGA 

post 

treatment 

Annual 

OPA for 

mammogram. 

Results given 

by doctor 

= 7 OPA 

Data for the first 10 patients has been 

collected and reviewed. They have 

received between five and 11 cycles of 

Herceptin treatments to date. The 

telephone clinic has replaced 13 OPAs 

producing savings in clinic capacity, 

travel time and costs. 

Non medical Model 

Last cycle 

of chemo: 

Herceptin 

start date 

given & 

MUGA 

requested 

NMP telephone clinic: MUGA results 

given. Assessment and care plan 

identified. Results recorded. 

Herceptin treatment prescribed. 

MUGA requested 

What did we do 

The new pathway allowed us to 

introduce the new National Cancer 

Research institute (NCRI) cardiac 

guidelines, reducing the number of 

MUGA scans required from six to a 

total of three. Hence the reduced 

number of telephone clinic assessments 

creating further efficiency savings. 

A number of developments support this 

testing: 

• Full clinical engagement from 

medical director 

• Identification of a project steering 

group, which includes two patients 

• Clinic code and template developed 

with the electronic patient 

management system 

• The Herceptin calendar designed by 

patients themselves. 

• Patient information leaflets 

• Protocol development to manage the 

patients through the pathway, 

ensuring safeguards in place. 

X3 

until 18 

treatments 

completed 

Annual 

OPA for 

mammogram. 

Results given 

by doctor 

= 1 OPA 

KEY: 

OPA = Outpatient appointment 

NMP = Non medical prescriber 

The new pathway is being tested in a 

sample of 30 patients with 25 patients 

recruited so far. 

The NMP manages the patients 

throughout their Herceptin pathway; 

booking scans, providing patients with 

results and prescribing treatment. 

Patients complete a ‘Distress 

Thermometer’, prior to commencing 

Herceptin, and at six and 12 month 

intervals. The patients’ care plan and 

follow up is based on this and 

discussed during the telephone clinic. 

Referrals to other agencies are made as 

required and patients are offered access 

to a structured cancer rehabilitation 

programme. They control their diary 

commitments by using the Herceptin 

calendar and are able to record relevant 

information, appointments, scan dates 

and results. 

Benefits of the non medical 

pathway to patient and 

organisation 

• Patient focused service; improving 

quality of life 

• Reduced number of visits to VCC 

• Reduced waiting times and improved 

capacity issues for VCC 

• Cost saving to patient, organisation 

and commissioners 

• Better utilisation of resources, i.e. 

staff, systems, treatment, clinic space 

• Development of structured referral 

mechanisms for cardiology, 

rehabilitation, GPs and other Allied 

Health Professionals 

• Improved quality of information 

recorded and given to patients 

• Innovative service; unique delivery of 

adjuvant Herceptin therapy pathway 

• Early booking of MUGA scans and 

early initiation of an ACE inhibitor 

optimises Herceptin treatment 

preventing patients having to stop 

therapy. 

What patients have told us they 

like about the new service 

It would ‘give consistency’. ‘Same 

person’ dealing with them. ‘Have an 

established relationship with that 

person’. They would ‘get results 

sooner’. Can organise my life much 

better’. ‘Practical information, given 

verbally or by email’.



• Great feedback from patients 

demonstrates approval of the new 

pathway 

• A lot of ‘distress’ identified through 

the thermometer not related to the 

Herceptin pathway at all, but tend to 

be general concerns about life hence 

referral to other agencies has helped 

reduce distress experienced 

• calendar has empowered patients to 

independently control and plan their 

treatment in advance, allowing 

flexibility around their commitments 

• The whole process has forced a step 

change in the quality of recording of 

information, now all patients’ 

baseline data has to be available in 

the electronic prescribing and patient 

management system for the clinic to 

work 

• Evaluation of the calendar’s benefits 

will be conducted as part of the pilot 

analysis. 

Next steps 

• Data will be collected for each 

patient over 12 months to measure 

the benefits for patients, the 

organisation and staff 

• We will map the resources and 

competencies required to in order to 

replicate the pathway within VCC 

and elsewhere 

• A number of NMPs have been 

identified to be trained to offer this 

service. 

Contacts 

Gill Donovan 

Lead Breast Cancer Nurse Specialist 

gill.donovan@wales.nhs.uk 

Jacqui Goom 


Jacqui.goom@roche.com


Worcestershire Acute Hospitals NHS Trust 

Life after prostate cancer: A new approach 

to follow-up in Worcestershire 

Summary 

There are around 600 men in 

Worcestershire newly diagnosed with 

prostate cancer every year. We’ve 

improved the pathway for men who 

have undergone potentially curative 

treatment and are clinically stable, by 

empowering patients to self manage 

and to provide support when they need 

it. They can now opt into holistic 

assessment and monitoring by a clinical 

nurse specialist (CNS). Patients also 

have access to a website and a 

conference. 


Men within Worcestershire who have 

undergone curative treatment for 

prostate cancer were traditionally 

followed up annually by Consultants 

within Urology or Cancer Care as 

outpatients clinics are often busy and 

patients may receive limited holistic 

care, have long waits and experience 

difficulties with transport and parking. 

A recent service evaluation also 

highlighted that this group felt they did 

not have a named individual who they 

could contact if they had a problem. 

It was felt that the 200 men per annum 

with prostate cancer who were stable 

(Prostate Specific Antigen, PSA level 

stable for at least two years) could be 

more effectively supported in self-care. 

What was done 

In order to improve support for stable 

prostate patients, they were offered a 

revised opt in follow-up scheme of 

holistic assessment over the telephone 

by a CNS to address care needs. The 

CNS monitors PSA results with referral 

to a Consultant as necessary. Patients 

are also invited to a conference for 

advice and information with staff and 

other patients. 

The Consultant Urologist led the local 

steering group comprising service users 

and staff from related disciplines, which 

also fed into the 3 Counties Cancer 

Network (3CCN, covering 

Worcestershire, Herefordshire and 

Gloucestershire). 

Current prostate cancer follow-up pathway


The following actions were undertaken: 

• Recruitment of a CNS with the 

appropriate skills and experience 

• CNS integrated into the established 

multi-disciplinary team 

• Development of a database to 

capture referrals, clinical data and 

monitor PSA readings taken by GPs, 

devised in conjunction with the 

Worcestershire Acute Hospitals NHS 

Trust IT department 

• Organisation of a conference offering 

comprehensive information and 

access to support. Speakers from the 

Trust and Macmillan covered topics 

including: nutrition, exercise, side 

effects, research and accessing 

reliable information about 

cancer/benefits. A question and 

answer session with questions asked 

anonymously to a multi-disciplinary 

panel including service users. There 

were also stalls by the Kidderminster 

Support Group, Macmillan and the 

Prostate Cancer Charity 

• Ongoing development of a website 

to provide information and links to 

further support. 

The evaluation of the new scheme is as 

follows: 

• Satisfaction questionnaires completed 

at the conference 

• Questionnaires before and after the 

conference – focusing on distress, 

perceived control and quality of life 

• National and local service evaluation 

including participation in the Picker 

patient experience questionnaire and 

other quality of life questionnaires 

• Focus group. 

Post change prostate cancer follow-up pathway 

Protocol for patient inclusion criteria and 

referral back into clinic appointment 

Posted Picker 

Institute Patient 

Survey before 

scheme 

Posted Picker 

Institute Patient 

Survey post 

conference 

Radical 

prostatectomy 

with undetected 

PSA readings 

Patient 2 years 

post treatment 

Post radical 

prostatecomy if 

PSA reading 0.1 

Increase 

frequency 

of test 

If 3 

consecutive 

tests are 0.1 

come back to 

clinic 

Post radical 

radiotherapy +/- 

hormones 

If nadir checks 

higher than 

previous, 

increase checks 

If raised and 

value up by 2 

or more patient 

comes back to 

clinic 

Consultant 

invites patient 

to join 

programme 

Radical 

radiotherapy 

without 

hormones 



Pre confirmed 

nadir score by 

consultant 

WHO 

Enter patient 

on data base. 

Inform CNS 

Distress 

thermometer 

completed by 

phone on first 

contact, entered 

on datbase 

Software 

checked daily 

for alerts. 

Patients 

regularly 

contacted 

by CNS 

Patient not asked 

PSA stable 

Patient attends 

annual 

conference 

Seen at 

consultant 

clinic 

Patient 

not 

asked 

Radical 

radiotherapy 

with 

hormones 



Pre confirmed 

nadir score by 

consultant 

Men with LUTS 

following 

treatment 

Patient has 

unstable PSA 

reading 

Patient 

refuses 

If the patient 

develops any 

new bone pain 

If the patient 

develops severe 

lower urinary 

tract symptoms 

or any any 

bowel 

problems 

If the ptient 

requests a clinic 

appointment 

If the ptient 

develops an 

erectile 

dysfunction 

which requires 

specialist 

treatment 

If the ptient 

has haematuria 

or rectal 

bleeding 

If the ptient 

has haematuria 

or rectal 

bleeding



work identified 

It is envisaged the follow-up will 

facilitate easier access to reliable 

information and improved support for 

patients and their families, including a 

key patient contact to enable: 

• CNS holistic assessment and access 

back into the health care system as 

necessary 

• Ongoing issues incorporated into a 

care plan to ensure action 

• CNS explicitly responsible to ensure 

PSA tests are undertaken/monitored 

• Patients more involved with the care 

process 

• Patients empowered to ask questions 

without attending hospital 

• No clinic wait times. 

In addition the conference enables: 

• Provision of information/advice 

• Access to health professionals, 

including those directly involved in 

their care 

• Engagement with local and national 

support services 

• Peer support and networking. 

Overall it is hoped that the new 

scheme will: 

• Help patients lead a normal life with 

and beyond cancer 

• Increase patient satisfaction with 

follow up care 

• Reduce distress and increase 

control/understanding/quality of life 

• Financial savings for patients and 

the NHS. 

Those attending the conference were 

asked if they would attend again, 48 

of the 52 who responded would reattend. 

‘The opportunity to talk to 

other people and share 

experiences, to look 

forward…..confident that 

there is now a single 

contact where help and 

advice can be found’. 

‘There is much more 

support available than I 

knew about and it is very 

reassuring that there is so 

much support’. 


• The importance of having a clear 

need identified initially, identified 

from the baseline mapping data and 

discussions with patients 

• Lead urologist and cancer 

commissioner on board at outset 

• Service user involvement 

• Ensuring all relevant medical 

professionals are fully informed and 

regularly updated 

• Early proactive engagement with GPs 

• Maintain contact across adjacent 

cancer centres to ease access to 

clinical information 

• Importance of the CNS developing 

good relationships with local teams, 

good knowledge of prostate cancer 

and information systems and 

perseverance 

• Flexibility within the database e.g. 

revision of mandatory fields. 

Next steps 

• Complete the evaluation to 

determine change in patient 

outcomes and experience 

• Continue engagement with 

commissioners to obtain continuing 

funding 

• Further collaboration with the 

University of Worcester’s Wellbeing 

Centre to address physical/exercise 

needs 

• Ensure systems enable the CNS role 

as efficient as possible, including 

provision of clinical cover 

• Further links with other cancer 

information databases 

• Consider a wider cohort of patients, 

including ‘complex needs’ prostate 

cancer patients and other tumour 

sites. 

Contacts 

Mary Symons 

Clinical Nurse Specialist 

Mary.Symons@worcsacute.nhs.uk


Model of care pathway 

Characteristics of the model of care pyramid may include: 

Self care model 

• No routine outpatient 

attendances 

• Stable disease pattern 

• After treatment with curative 

intent 

• Information ‘prescription’ and/or 

an educational intervention 

• Automated surveillance tests 

with results by post or phone 

• Ability to re access system 

with/without reference to GP. 

Guided care model 

• Those who are unable to self manage 

and need guidance to ensure access to 

the right services to meet their needs 

• Planned review of care e.g. hospital, 

community, face to face or telephone 

• Clinical examination 

• Clinical or individual risks identified 

(disease, treatment, person) making 

patient unsuitable for supported self 

management 

• Multi professional input required 

• Patients with significant comorbidities 

• Patients with salvage options. 

Complex care model 

• Complex rapidly changing 

health 

• Rare complex tumours 

• Complex treatment 

complications 

• Complex ongoing treatment 

regimes 

• Other input required e.g. 

cardiology, haematology, 

gastroenterology 

• Requiring regular MDT reviews 

• Acute exacerbations.


Contact details 

For general enquiries please email: 

survivorship@improvement.nhs.uk 

Adult Cancer Survivorship Team 

Gilmour Frew 

NHS Improvement Director - Cancer 

gilmour.frew@improvement.nhs.uk 

Tel: 07747 776 578 

Vanessa Brown 

NHS Improvement - National 

Improvement Lead 

vanessa.brown@improvement.nhs.uk 

Tel: 07748 704 288 

Anne Wilkinson 

NHS Improvement - National 

Improvement Lead 

anne.wilkinson@improvement.nhs.uk 

Tel: 07827 309 156 

Sue O’Neil 

PA - NHS Improvement 

sue.o’neil@improvement.nhs.uk 

Tel: 0116 222 5112


For your notes

CANCER 

DIAGNOSTICS 

HEART 

LUNG 

STROKE 

NHS Improvement 

With over ten years practical service improvement experience in cancer, 

diagnostics and heart, NHS Improvement aims to achieve sustainable 

effective pathways and systems, share improvement resources and 

learning, increase impact and ensure value for money to improve the 

efficiency and quality of NHS services. 

Working with clinical networks and NHS organisations across England, 

NHS Improvement helps to transform, deliver and build sustainable 

improvements across the entire pathway of care in cancer, diagnostics, 

heart, lung and stroke services. 

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