PEPSI COLA Aide Memoire - East Midlands Cancer Network

Document History
Document Location
This document is only valid on the day it was printed.
The source of the document will be found at this location –
www.eastmidlandscancernetwork.nhs.uk
Revision History
Date of this revision: 25 August 2010
Date of next revision: December 2011
Revision Previous Summary of Changes
date revision date
25/08/10 First issue
Changes
marked
Approvals
This document requires the following approval.
Name Title Date of Version
Issue
Mr T Rideout Chief Executive NHS Leicester City 01/09/10 1.0
Distribution
This document has been distributed to:
Group Name Location Date of Issue Version
Primary Care Trust East Midlands 01/09/10 1.0
Acute Trust East Midlands 01/09/10 1.0
General Practitioners East Midlands 01/09/10 1.0
Lead Cancer Nurses East Midlands 01/09/10 1.0
Allied Health Protection East Midlands 01/09/10 1.0
Leads
Voluntary Sector East Midlands 01/09/10 1.0
Hospices East Midlands 01/09/10 1.0
EMCN NSSG Boards East Midlands 01/09/10 1.0
Lead Nurses in East Midlands 01/09/10 1.0
Community
Long Term Conditions East Midlands 01/09/10 1.0
Managers
Social Services East Midlands 01/09/10 1.0
This list is not exhaustive as further dissemination will take place by the above groups

Content
1. Introduction ........................................................................................... 4
2. Key Evidence ........................................................................................ 5
3. Purpose of Guidelines........................................................................... 6
4. Who should be Assessed.................................................................... 6
5. Who should be the Assessor............................................................... 6
6. Competencies ....................................................................................... 7
7. Education & Training............................................................................. 9
8. When should you Assess.................................................................. 10
9. How to Assess .................................................................................... 11
10. Recording, storing and sharing information from the assessment....... 14
11. Taking Action ...................................................................................... 15
12. Patient Information.............................................................................. 15
13. Minimum Standards and Outcome Measures ..................................... 16
14. Summary............................................................................................. 16
15. References and bibliography............................................................... 18
16. Acknowledgements............................................................................. 18
Appendix A – Cancer Patient Pathway..................................................................... 20
Appendix B – PEPSI COLA Communication Pro-Forma .......................................... 21
Appendix C – Holistic Needs Assessment Template................................................ 23
Appendix D – PEPSI COLA Aide Memoire............................................................... 29
Appendix E – Distress Thermometer........................................................................ 31
Appendix E continued............................................................................................... 33
Appendix F – Patient Leaflet..................................................................................... 35
Appendix G – Priority 2 – Holistic Assessment of Patient Supportive & Palliative Care
Needs.................................................................................................. 37
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1. Introduction
The aim of this document is to be a guide for the Holistic Needs Assessment (HNA)
for the Supportive and Palliative Care of adults with cancer and their carers; this can
support practitioners and managers providing or co-ordinating the care. The
guidance has been prepared in response to recommendations from the National
Institute for Health and Clinical Excellence Guidance on Improving Supportive and
Palliative Care for Adults with Cancer (NICE 2004). It can be used to check if current
documentation records the information listed in this guide. It can help with updating
patient records, and can be used as the standard to audit documentation against. It
is designed for healthcare teams to use as a benchmark against which current local
processes of assessment can be audited. It is recommended that an audit of practice
is completed 2 yearly. The results should be acted upon to enable improvements to
be made and to inform future commissioning.
Being clear about the kind of information we should be gathering on patients and
their carers is fundamental to the delivery of high quality care. When done well a
Holistic Needs Assessment (HNA) is helpful in not only gathering useful information
but can also be therapeutic in its own right.
A good Holistic Needs Assessment depends on well developed communication skills.
In recent years, throughout the East Midlands Cancer Network (EMCN), Advanced
Communication Skills courses have been delivered to senior health care
professionals. These courses, and the research they are based on, emphasise the
importance of having a patient-centred rather than just a disease-centred approach in
assessing patients.
A Holistic Needs Assessment tool, defined by The Kings College London (2005), is a
collection of questions, scales and other means of obtaining information which
provides a consistent and comprehensive system through which patient’s needs for
support and care can be explored. In addition, to assisting professionals to
determine appropriate care for a patient, the information might also be used for audit
and service planning.
The need for robust care planning and coordination of care is highlighted in the End
of Life Care Strategy (DOH 2008). Undertaking a Holistic Needs Assessment helps
achieve this both at the end of life and also at all stages of the pathway. By clearly
identifying and documenting patient’s needs care can be planned accordingly.
Living with and beyond cancer (survivorship) has been recognised in the Cancer
Reform Strategy (DOH 2007). It is therefore important for the assessor to assist the
patient to adapt to normal life following their treatment phase. Prevention and health
promotion are also key priorities within the strategy and the assessor needs to use
the assessment process not only to encourage patients to live more healthily but also
to help their carers.
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Advance Care Planning discussions can be undertaken during a Holistic Needs
Assessment but should not be forced upon an individual.
The Mental Capacity Act came into force in 2005. Important elements include
Advance Decisions to Refuse Treatment and the personal welfare Lasting Power of
Attorney. There should be a clear record if a patient has these, including what has
been discussed and acted upon. It should also be clearly documented if a patient has
already used these processes to guide their choice of care.
2. Key Evidence
The requirement to offer people with cancer a range of physical, emotional, spiritual
and social support was one of the key recommendations in the NICE guidance on
Supportive and Palliative care:
Key Recommendation 2: Assessment and discussion of patients’ needs for
physical, psychological, social, spiritual and financial support should be
undertaken at key points (such as at diagnosis; at commencement, during, and
at the end of treatment; at relapse; and when death is approaching). Cancer
Networks should ensure that a unified approach to assessing and recording
patients’ needs is adopted, and that professionals carry out assessments in
partnership with patients and carers.
From Improving Supportive and Palliative Care for Adults with Cancer, published by
the National Institute for Clinical Excellence, (NICE) March 2004
The NICE guidance, (2004), also gave further specific recommendations with respect
to assessment:
• Patients should be offered support to help them to assess their own needs
• They should not be subjected to unnecessary repeated assessments from
different professionals aiming to elicit similar information
• Assessments should encompass all aspects of Supportive and Palliative care
• A structured assessment should be undertaken and recorded (in an agreed
format) at key points in the patient pathway with mechanisms developed for
sharing the data among the multidisciplinary team
• Following each assessment, potential interventions should be discussed with
patients and carers and a mutually agreed action plan formulated
• Health and social care professionals who undertake assessment should have
received training in assessing patients’ and carers’ needs (see section 7)
In January 2007 the National Cancer Action Team published a specification for the
holistic common assessment of Supportive and Palliative care needs for adults with
cancer. The specification outlined 5 domains of assessment:
• Background information and assessment preferences
• Physical needs
• Social and occupational needs
• Psychological well-being
• Spiritual well-being
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3. Purpose of Guidelines
The East Midlands Cancer Network guidelines are intended to assist teams in
implementing the Holistic Needs Assessment in any setting. (This is likely to be done
by the Key Worker). The key stages of the cancer patient’s journey have been
identified to indicate where a HNA should be undertaken to ensure and identify any
Holistic Care Needs and co-ordinate the patient’s care (see Appendix A). Where
teams use this guidance for other disease pathways, the stages may vary slightly.
4. Who should be Assessed
All patients with a diagnosis of cancer and/or receiving care in any setting should be
offered this assessment.
It is not expected that this Holistic Needs Assessment will be offered routinely to
patients with suspected cancer. However, assessment should always be offered to
any individual with suspected cancer who has supportive care needs.
The guidance is for the assessment of patients needs and has not been designed to
assess the needs of carers. However, it is recognised that carers’ needs might be
identified during the course of the patient assessment, and this may in itself raise a
need for further assessment of the carer and acted upon.
5. Who should be the Assessor
The patient’s healthcare team at each stage of the pathway is responsible for
ensuring that the assessment takes place at that key point. The patient’s Key Worker
is ideally placed for undertaking the Holistic Needs Assessment with the patient. In
the Acute setting, the Key Worker will be a Clinical Nurse Specialist (CNS) where
one is in post. In the absence of a CNS a senior nurse or other health care
professional may be allocated as a Key Worker. The HNA may also be undertaken
by other competent health professionals or in primary care by an appropriate
member of the healthcare team.
Teams should use the following principles when selecting an assessor:
• The assessor should have reached an agreed level of competence in key
aspects of the assessment process
• The assessor should be a clinical professional with an appropriate level of
knowledge of the disease, its symptoms, treatment and likely prognoses
• The selection should be in accordance with any patient preferences for
communicating with a particular professional
• The assessor should have access to up-to-date information about local
service providers, referral criteria and support services
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6. Competencies
The competencies have been adapted from Department of Health Core
Competencies for End of Life Care (June 2009) and Marie Curie Spiritual & Religious
Competencies for Specialist Palliative Care.
Communication Skills
• Communicate with a range of people on a range of matters in a form that is
appropriate to them and the situation
• An ability to develop a rapport with patients and carers
• An ability to elicit the patient’s key concerns at a pace directed by the patient
• Develop and maintain communication with people about difficult and complex
matters
• Present information in a range of formats, including written and verbal, as
appropriate to the circumstances
• Understand the importance and impact of non-verbal and verbal
communication recognising the importance of active listening
• Utilise all forms of patient information to enable the patient to have a better
understanding of their diagnosis and treatment plan (see section 12)
• Listen to individuals, their families and friends about their concerns and
provide information and support
• Work with individuals, their families and friends in a sensitive and flexible
manner, demonstrating awareness of the impact of a cancer diagnosis, and
recognising that their priorities and ability to communicate may vary over time
• Act as an advocate for the patient who has or may have had cancer
• Initiate and participate in MDT discussion and case conferences with all
professionals involved in the delivery of patient care
• Understand confidentiality with regard to the patients/carers personal
information and what may be shared within the MDT
• Act as a communication resource and co-ordinator for other members of the
multi-professional team in the care of the patient
• Ensure accurate follow-up documentation is maintained including any changes
in the named Key Worker
• Have sufficient knowledge and links with national/local support groups and be
able to provide/record information relating to these groups to guide and advise
patients
Assessment and Care Planning
• Recognition of their own personal limits
• Documents patient/carer information in a way that respects confidentiality of
individuals and of the MDT
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• Understand the range of assessment tools, and ways of gathering information,
and their advantages and disadvantages
• Document the assessment, intervention, outcomes and referrals for
patients/carers
• Assess pain and other symptoms using assessment tools, pain history,
appropriate physical examination and relevant investigation
• Undertake/contribute to multi-disciplinary assessment and information sharing
• Ensure that all assessments are holistic, including:
o Background information
o Current physical health and prognosis
o Social/occupational well-being
o Psychological and emotional well-being
o Religion and/or spiritual well-being, where appropriate
o Culture and lifestyle aspirations, goals and priorities
o Risk and risk management
o The needs of families and friends, including carer’s assessments
• Regularly review assessments to take account of changing needs, priorities
and wishes, and ensure information about changes is properly communicated
• Co-ordinate the onward referral of patient and/or family members to
appropriate clinical or support services
• Utilise all available support strategies and interventions
• Initiate appropriate referrals when caring for patients with Complex needs, e.g.
patients exhibiting denial/anger following cancer diagnosis, adverse reactions
to altered body image
• Understand the ethical issues relating to treatment in advanced disease
Symptom management, maintaining comfort and well being
• Be aware that symptoms have many causes, including the disease itself, its
treatment, a concurrent disorder, including depression or anxiety, or other
psychological or practical issues
• Understand the significance of the individual’s own perception of their
symptoms to any intervention
• Understand that the underlying causes of a symptom will have an impact upon
how care should be delivered
• Understand the range of therapeutic options available, including drugs,
hormone therapy, physical therapies, counselling or other psychological
interventions, complementary therapies, surgery, community or practical
support
• In partnership with others, including the individual, their family and friends,
develop a care plan which balances disease-specific treatment with other
interventions and support that meet the needs of the individual
• In partnership with others, implement, monitor and review the care plan
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• Awareness of cultural issues that may impact on symptom management
• Be aware of local contact arrangements in the event of patients experiencing
unwanted side effects.
Advance Care Planning
• Demonstrate awareness and understanding of Advance Care Planning, and
the times at which it would be appropriate
• Demonstrate awareness and understanding of the legal status and
implications of the Advance Care Planning process in accordance with the
provisions of the Mental Capacity Act 2005
• Show understanding of Informed Consent, and demonstrate the ability to give
sufficient information in an appropriate manner
• Use effective communication skills when having Advance Care Planning
discussions as part of ongoing assessment and intervention
• Work sensitively with families and friends to support them as the individual
decides upon their preferences and wishes during the Advance Care Planning
process
• Where appropriate, ensure that the wishes of the individual, as described in an
Advance Care Planning statement, are shared (with permission) with other
workers.
Spirituality & Religion
• Recognise that everyone has a spiritual dimension, and that some people will
have a religious element to their spirituality
• Recognise their personal boundaries in spiritual care and know when to refer
on for more experienced assistance whilst understanding the skills that other
members of the Multi-Disciplinary Team (MDT) possess in relation to spiritual
care
• Understand the nature of spiritual assessment including religious and ethical
dimensions
• An ability to describe and evidence a working definition of spiritual and
religious needs
7. Education & Training
It is necessary for individuals who perform the Holistic Needs Assessment to identify
their training needs in their KSF Development Review; the individual must ensure
that they meet the standard of competence necessary to be able to undertake
Holistic Needs Assessment, i.e.
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• The professional carrying out the Holistic Needs Assessment should
have experience in cancer care and up-to-date information on local
service providers, referral criteria and support services
• All professionals carrying out the Holistic Need Assessment should have postregistration
training and education in intermediate/advanced communication
and/or counselling skills, and for core MDT members within secondary care, to
have undertaken the National Advanced Communication Skills Training
course
• All staff should have basic cancer awareness – able to recognise the impact of
diagnosis and treatment and consider practical, financial and emotional effects
• The line manager should ensure appropriate clinical supervision is available
for those undertaking this role
• The individual carrying out the Holistic Needs Assessment must be either a
recognised core-member of the relevant cancer or palliative care local or
specialist MDT, or a member of the patient’s primary health care team and/or
Hospice staff
• The individual performing the Holistic Needs Assessment is responsible for
identifying any other personal training needs required in relation to fulfilling this
role
• Training in the use and application of the Distress Thermometer is
recommended.
8. When should you Assess
The NICE Supportive and Palliative Care Guidance (2004) states that whilst
assessment should be an ongoing process, structured assessments of patients’
needs should be undertaken at key points in their cancer journey, (Appendix A), and
should supplement day-to-day appraisal of individual patients.
An assessment can be carried out in any setting that ensures comfort and privacy
and will be determined by the patient’s care setting at that point in their pathway.
Assessment is likely to be needed at:
• Around the time of diagnosis
• Commencement of treatment (if appropriate for patient care)
• Completion of primary treatment plan
• Each new episode of disease recurrence
• The point of recognition of incurability / Palliative Care (Gold Standard
Framework may be a trigger)
• The point at which dying is recognised (Liverpool Care Pathway may be
commenced)
• At any other time the patient requests it
• At any other time that a professional carer may judge necessary
• Survivorship (a Holistic Needs Assessment may be needed to produce
individualised self care plans to form part of the discharge process)
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Whilst best practice suggests that a full assessment should be completed in a single
session, this might not always be practical or appropriate. The assessment should
follow these principles:
• The timing and pace of the assessment is patient sensitive
• Priority needs are identified at an early stage
• The whole assessment is completed within a reasonably short time
• If the assessment is to be completed by a different assessor communication
must take place with the appropriate healthcare professional. An example of a
communication tool is the PEPSI COLA Communication pro-forma (Appendix
B)
9. How to Assess
All patients should have an assigned Key Worker at each stage of their care pathway
(please see the EMCN ‘Policy for the Key Worker role in the management of adult
patients with cancer (2010)). The most appropriate health care professional to act as
Key Worker is dependent on individual patient’s needs.
Best practice recommends that a HNA can be completed at any point of the patient’s
pathway. An example of the minimum information that must be recorded is shown in
Appendix C.
A HNA may already be embedded within your organisation. Otherwise examples are
shown in the appendices. The PEPSI COLA Aide Memoire compliments the process
as a practical guide for staff (Appendix D).
Using the Distress Thermometer as part of the HNA will help the assessor to
evaluate if a patient requires referral to other agencies or the need to escalate to
level 3 or 4 of the psychological support pathway. Staff will need training in the use
of the Distress Thermometer before using this particular assessment tool (Appendix
E).
Before doing a full assessment of a patient and carer’s needs, it is useful to start by
finding out as much information as possible from previous notes or letters and
colleagues before seeing the patient. When seeing the patient it is useful for the
consultation to follow a structure. This helps to ensure as much appropriate
information is gathered as possible. It also has been shown to increase the
usefulness of the consultation to the patient.
This guide can be used not just as a structure in assessing patients but can also be
used to inform what should be recorded. For example it is helpful to ask about and
record patients’ concerns, expectations and feelings as well a history of the illness
and a list of drugs. The five main parts to this structure are:
1. Initiating the session
2. Gathering information
3. Building the relationship
4. Explanation and planning
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5. Closing the session
When initiating the session it is important to be clear about whom you are and what
your role is, and also to check what the patient likes to be called. Gathering
information is about listening to the patient’s narrative to see what they know and
what currently are their concerns and feelings.
For this part of the consultation it is useful to start off with an open question such as
‘Could you tell me what has been happening to you since the beginning of this
illness’ or ‘How did all this start’ The assessor can pick up on various points and
cover information that has not yet been addressed. Summarising shows the patient
you have been listening carefully and helps the patient come up with any other
concerns they may have.
The history also usually provides a basis on which to construct a list of problems and
concerns from the patient's point of view. Acknowledging the patient’s views and
feelings and being empathic, ‘It sounds to me like you’ve had a tough year’, helps to
build the relationship.
Many patients leave consultations without understanding things so explanation and
planning is important.
Closing the session involves checking if there is an understanding of the discussion
and if there are any other concerns and then making plans for follow up.
Assessments can be more complex than this but generally follow the above
structure.
Patients who are ill and tired may not be able to partake in a prolonged Holistic
Needs Assessment (HNA). The reality of working in a busy clinical environment also
means that staff time is limited. To get the best out of the assessment and to make
things more effective for everyone, including patients and carers, there are a number
of things that can be done:
• Being clear about what information is discussed / required. This guidance
outlines what information should be collected
• Documentation needs to be well designed. It is important that paperwork is
well designed so that it can be quick and easy to fill in. (See Appendix C for
suggested content)
• Information should be shared. The NICE Supportive and Palliative Care
Guidelines (2004) recommend that patients should not be subjected to
unnecessary repeated assessment from different professionals aiming to elicit
similar information. Sharing information saves staff, patients’ and carers’ time.
It is important that the paperwork and electronic systems allow relevant
information to flow easily between the various teams an example of this is the
adapted PEPSI COLA communication pro-forma (Appendix B)
• Have similar ways of recording information. Family trees can be recorded
in the same way for example using the same types of genogram graphics as
in Appendix C
• Remove obsolete documentation. It is worth reviewing paperwork from time
to time, for example when documentation is being audited. It is relatively easy
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to add extra bits of paperwork to be filled in but more difficult to remove bits of
paperwork that have become obsolete
• Use the same documentation across departments. Using the same
paperwork across different departments and providers can also save time
• Communication skills training helps healthcare professionals carry out
holistic assessments that more accurately identify patients’ concerns and is
more likely to lead to better patient satisfaction
PEPSI COLA Communication tool / Aide Memoire for undertaking the HNA
The PEPSI COLA can be used as an aide memoire to ensure patient’s holistic needs
are assessed.
The aide memoir was adaptation from the Gold Standard Framework (GSF) by
Mount Vernon Cancer Network (Appendix D). It is a tool to support practitioners
carrying out assessments and can be used with current assessment tools and
documentation. It promotes communication, support between professionals and
patients, and provides a framework to consider patients holistic needs.
The aide memoir encompasses all the domains of a Holistic Needs Assessment
through the acronym PEPSI COLA:
P
E
P
S
I
C
O
L
A
Physical
Emotional
Personal
Social Support
Information and Communication
Control and Autonomy
Out of Hours
Living with your Illness
Aftercare
In each domain the tool identifies:
• Consider - Potential anticipated patient issues and concerns
• Resources - Cue questions to ask patients and carers
• Refer on if Appropriate - Resources for professionals to signpost to.
The PEPSI COLA Communication Pro-forma is an adaptation to aid clear
communication pathways.
To avoid patients having repeated assessments, the communication pro-forma
allows the assessor to acknowledge information gained and to communicate this to
the most appropriate healthcare professional as follows:
• If there are no problems identified record in the Patient’s needs met column
that there are no issues at that particular assessment (it needs to be
acknowledged that this assessment is only valid as per the date and will need
to be reviewed and evaluated at subsequent assessments)
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• If there is a problem identified, the assessor will document this in the
Patient’s needs not met column, with a detailed action plan
A copy of every assessment must be filed in the patients notes for continuity of care.
However if an onward referral is an outcome for example secondary to primary care
a copy of the document with the patient’s consent will be sent to the appropriate
healthcare professional. (If requested a copy can be given to the patient)
10. Recording, storing and sharing information from the assessment
The healthcare team should agree standard processes for the recording, storage,
and sharing of assessment information.
Each assessment should be recorded. An assessment record should capture:
• Information obtained through the use of the Distress Thermometer. This will
form the basis for future assessments
• All identified needs documented and referrals documented as appropriate
• Relevant discussion relating to identified needs
• Overall conclusions of the assessment and the evidence behind them
(Conclusions should be agreed with the patient and any major difference of
opinion recorded)
• A summary record of the principal findings, and actions agreed with the patient
It must be recorded in all the patient’s notes that the patient has been offered a
Holistic Needs Assessment and if they have accepted or subsequently declined.
The Distress Thermometer needs to be held in the patient’s medical notes. (The
patient may also request a copy). Detailed information from the assessment should
be held in electronic or paper files, as a ‘full record’ of the assessment activity at that
point in time. It is imperative that, where electronic systems exist, a record of
assessment is recorded. As a minimum, the use of a paper-based system for sharing
the record of assessment e.g. a patient-held record may be used. The record of
assessment should support sharing both within and across the teams and agencies
involved in the care of the patient.
Supportive and Palliative care may be provided by care teams from organisations
outside the NHS, e.g. social services. Where it is in the best interest of the patient’s
care for the assessment record to be shared with organisations outside the NHS, the
assessor should discuss and agree this with the patient beforehand. In instances
where the patient does not agree the assessor should discuss with the patient the
possible effect this may have on their care and the alternatives available to them.
This needs to be documented in the patient’s notes.
Generally speaking, the HNA should be shared between multi-professional teams
and across agencies as required, subject to the patient’s consent.
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Assessors should have routine access to the details of any previous assessments
and, on request to the team(s) responsible for them, access to further information
from the full records of such assessments where these may be relevant to the current
care of the patient. This information may include any other pertinent assessments,
including specialist assessments. This is all with the consent of the patient.
11. Taking Action
The assessor should work with the patient to identify solutions or actions and to plan
care. Where possible the assessor should focus on what the patient can do for
himself or herself. If more help is needed the assessor should establish whether this
can be provided by the patient’s current care package.
If referral is needed, the assessor should be aware of local services and their referral
criteria. Where referral is necessary the assessor should:
• Agree the referral with the patient and seek their agreement to appropriate
information sharing with the agency
• Discuss the assessment and referral with the receiving agency including, if
appropriate, agreeing a lead professional
• Where there is agreement, share the content of HNA with the agency
• Communicate with the patient’s Key Worker (if they are not the person
undertaking the assessment)
12. Patient Information
Offering information throughout the patient journey is an integral part of holistic care,
and must not be seen as a ‘one-off’ task. Information needs change over time, and
differ markedly between patients, so assumptions of need should not be made
without sensitively questioning the patient about their wish for information, their
background knowledge, and the type and depth of information they would like.
Information provision should normally be recorded on an Information Prescription,
which can be updated with subsequent assessments, and, with the patient’s
permission, be shared as part of continuing care when the Key Worker changes.
If a patient refuses information this should be documented. However information
should still be offered at each assessment, and at any other stage when requested
by the patient.
Information should be offered in three main areas:
i. Disease related - depending on the patient’s wishes, this may be on cancer,
the tumour type, prognosis, inheritable factors, treatments, effectiveness,
alternative therapies, self care
ii. Support - support groups (local and national), reliable websites, voluntary
services, appropriate help lines
iii. Appropriate services - NHS, benefits advice, social services
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The assessor should remain alert to signs that the patient does not understand the
information provided, or that they may have unanswered questions, and use
advanced communication skills to ensure that the patient can ask for the information
they need.
The assessor should have information available through the Information Prescription
Generator and/or local resources. The assessor should also seek expert guidance
from information centres or other appropriate specialists whenever required.
An example of a Patient information leaflet in relation to the Holistic Needs
Assessment is included as Appendix F.
13. Minimum Standards and Outcome Measures
The IOG recommends that audits are completed against EMCN guidance.
The following measures are recommended:
• It must be recorded in all the patients notes that the patient has been offered
an Holistic Needs Assessment with reference to their choice
• The Distress Thermometer is completed and held within the patient notes
• 50% should be offered assessment using network agreed approach and rising
to 100% by December 2011 to meet core deliverables as per Appendix G
• All identified needs documented and referrals documented as appropriate
• Relevant discussion relating to identified needs
• Evidence of the review of the physical, social, psychological, emotional and
spiritual beliefs of the patient is evident
• The training and competencies of assessors are appropriate as per this
guidance - section 6 and 7
• Processes in place for both offering an assessment and the uptake of
assessment documented in the patient’s notes
Each provider organisation should take responsibility for auditing the effectiveness of
the Holistic Need Assessment. This audit should take place at least two yearly.
Documentation mentioned to be read as both paper and electronic documentation.
14. Summary
Assessment forms an integral part of patient care and should be seen as a
continuous process. Undertaking a Holistic Needs Assessment at key points forms
part of this continuous process, and should supplement day-to-day appraisal of
individual patient needs.
The assessor should take account of any patient needs identified in previous
assessments.
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The patient is at the heart of assessment and care planning. The process of
assessment should be one of partnership between patient and professional.
Assessment should be patient ‘concerns-led’. Helping patients to assess their own
needs should be central to the process. The assessment should mainly follow a
conversational style.
Self-assessment is a useful way to identify issues of particular concern to the patient,
for subsequent discussion with the assessor. Patients should therefore be offered the
opportunity to self-assess. Self-assessment is widely seen as acceptable for many
aspects of the physical, social and occupational well-being domains. Caution should
be exercised in relation to the psychological well being domain and not pursued in
relation to the spiritual well-being domain since the latter in particular does not lend
itself to self-assessment.
Healthcare teams may wish to utilise one or more existing tools as part of a Holistic
Needs Assessment; however, in all cases it must be ensured that the assessment
covers the full range of needs listed in this guidance. An example of a suitable tool
would be the PEPSI COLA documents (Appendix C). The East Midlands Cancer
Network also supports the use of the Distress Thermometer.
All Holistic Needs Assessments should be documented and evidenced in the
patient’s notes. This process should then be audited and the results acted upon to
ensure care delivery is monitored and improved for safe effective delivery of patient
care across the whole pathway as outlined in Appendix A.
My learning space (www.mylearningspace.me.uk) has electronic competencies for
both Key Worker and Holistic Needs Assessment and these can be accessed by the
End of Life Care hub.
For further information and access to downloadable documents please visit the East
Midlands Cancer Network website www.eastmidlandscancernetwork.co.uk
17

15. References and bibliography
Calman Hine (1995) A policy framework for commissioning cancer services: A report
by the Expert Advisory Group on Cancer to the Chief Medical Officers of England
and Wales. London: DOH
Cancer Action Team (2007) Holistic Common Assessment of Supportive and
Palliative Care Needs for Adults with Cancer: Assessment Guidance. London:
Cancer Action Team
Department of Health (2007) Cancer Reform Strategy. London: DOH
East Midlands Cancer Network (2010) Policy for the Key Worker role in the
management of adult patients with cancer
National Institute for Clinical Excellence (2004). Guidance on cancer services:
improving supportive and palliative care for adults with cancer. The manual.
London: National Institute for Clinical Excellence
Keri Thomas (2003) Caring for the Dying at Home
Richardson A, Sitzia J, Brown V, Mediana A, (2005) Patients Needs Assessment
Tools in Cancer Care; Principals and Practice. London. Kings College London
16. Acknowledgements
East Midlands Cancer Network Patient Partnership groups
East Midlands Cancer Network Supportive and Palliative Care Service Improvement
Facilitators
East Midlands Cancer Network Supportive and Palliative Care group
18

Appendices
Appendix A - Cancer Patient Pathway
Appendix B - PEPSI COLA Communication Pro-Forma
Appendix C - Holistic Needs Assessment Template
Appendix D - PEPSI COLA Aide Memoire
Appendix E - Distress Thermometer
Appendix F - Patient Leaflet
Appendix G - Priority 2 - Holistic Assessment of Patient Supportive & Palliative Care
Needs
19

Appendix A – Cancer Patient Pathway
Key
Secondary Care
Primary Care
information
prescription discussed
Key Worker
CANCER PATIENTS PATHWAY
RECOMMENDED STAGES FOR ALLOCATION OF KEY WORKER &
HOLISTIC ASSESSMENT
Holistic Needs Assessment
Minimum Requirements
Documented in relevant Medical, Nursing Notes / Verbal & Written Name & Contact Details of Key Worker
Key Worker / Holistic Needs Assessment Information Leaflet
+/- Consultant / G.P / District Nurses / Community Matron / Allied Health Care Professional / Macmillan Palliative Care CNS (if complex symptom management or
other palliative care needs)
DIAGNOSTIC
INVESTIGATIONS
Highly suspicious
of cancer
Key Worker = GP
AROUND THE
TIME OF
DIAGNOSIS
Key Worker = Site
Specific CNS
COMMENCEMENT
OF TREATMENT
Key Worker = Site
Specific CNS
COMPLETION OF
TREATMENT
Key Worker = GP /
DN or Site Specific
CNS if ongoing
rehabilitation needed
SURVIVORSHIP
Key Worker = GP
DISEASE
RECURRENCE
Key Worker = Site
Specific CNS / GP /
Community Nurse
PALLIATIVE CARE
(point of
recognition of
incurability)
Key Worker = GP
*Consider GSF &
Advanced Care
Planning
END OF LIFE
CARE
Key Worker =
Community /
Hospice Nurse /
Hospital Palliative
Care CNS / GP
‘Non-clinical’ information applies throughout the pathway as a minimum.
For further information on these pathways see:
East Midlands Cancer Network Guidelines for The Holistic Needs Assessment for adult patients with cancer (2010)
East Midlands Cancer Network Policy for the Key Worker role in the management of adult patients with cancer (2010)
NB: The patient can request without any explanation a change of their Key Worker
This chart is designed to guide clinicians on the most appropriate healthcare professionals to act as the patients Key Worker at all stages in the cancer patients care pathway. In most cases the hospital site specific
Clinical Nurse Specialist will be the Key Worker during the acute treatment stages. The GP, working in collaboration with other professionals, may be the Key Worker when patients are in the community. At the
End Of Life the Key Worker may change depending on which care setting the patient is in i.e. home, hospice, hospital.
20

Appendix B – PEPSI COLA Communication Pro-Forma
Patient Name: GP Details:
Address:
NHS No:
Hospital No:
Completed by (name & designation) Contact Details:
P
Physical
E
Emotional
P
Personal
Consider Date / Signature Patients
needs
are met
• Symptom Control and use of tools
• Medication – Regular/PRN
• Compliance/stopping non essential
treatments
• Treatment/medication side effects
• Alternative therapy referral
• Understanding expectations of patient
• Low mood, fears, anxieties, strengths
• Coping mechanisms and interests
• Altered body image
• Relationships with others
• Patient/family’s cultural background/ ethnic
group
• Needs related to spiritual wellbeing, ie:
support structures, space to reflect/
pray/quiet time
• Patient’s concerns/desires future and
present
• Worries and challenges
• Religious items
____/____/____
____/____/____
____/____/____
Kindly reproduced and adapted from the GSF toolkit 2004 by The Mount Vernon Cancer Network
Patients needs not met
(what needs doing Action Plan)
21

S
Social
Support
Consider Date / Signature Patients
needs
are met
• Care for carers
• Practical/family support
• Occupational/financial welfare support
services
• Social & recreational activities
____/____/____
I
Information
Communication
• Identify the key team as per EMCN MDT
policy
• Liaison with MDT/PHCT or the receiving
health care worker
• Appropriate patient information leaflets
____/____/____
C
Control
O
Out of Hours
• Discussion around patient choice
• Patient dignity
• Treatment options/plans discussed
• Preferred place of care documented
• Advanced care planning
• Communication to out of hours service
(OOH)
• Access to drugs/equipment
• Ensure continuity of care
____/____/____
____/____/____
L
Living with
your illness
A
After Care
• Follow up care
• Rehabilitation support
• Patient/carer expectations
• End of life care planning (if appropriate)
• Liverpool Care Pathway
• GSF register
• Future support - family/patient
• Discharge planning
• Reassessment
• Bereavement follow up
____/____/____
____/____/____
Kindly reproduced and adapted from the GSF toolkit 2004 by The Mount Vernon Cancer Network
Patients needs not met
(what needs doing Action Plan)
22

Appendix C – Holistic Needs Assessment Template
Holistic Needs Assessment Template
Assessment information and preferences
Date of last assessment
The assessor should have copies of previous holistic
assessments on file, should be aware of the needs identified in
previous assessments, and should be aware of actions taken
to address those needs
Date of this assessment
Name, role and contact details of assessor
Key point / trigger
Key point at which the assessment is being undertaken
or the trigger for assessment (e.g. professional concerns,
patient initiated, carer initiated)
Site of this assessment
Patient’s ability to participate in
face-to-face assessment
Sensitivities regarding assessment
Willingness for assessment and consent
Preference for family member or
carer to be present at assessment
The assessor should determine the patient’s:
• Communication ability (hearing, vision, speech / voice /
oral communication, use of alternative communication,
language issues)
• Cognitive ability (understanding, memory)
Cultural sensitivities
Current health/fatigue
The assessor should determine the patient’s willingness to
take part in assessment and also the patient’s willingness to
‘self report’ where possible. This discussion should identify any
cultural sensitivities regarding assessment, identify any
reservations the patient might have, and generally identify any
other barriers to assessment
Demographic Information
NHS number and other
numbers
Patient title (Mr, Ms, Mrs, Miss,
Dr, Fr) other - specify
Patient name
Address - house number, road,
locality, town, county, and
postcode
Preferred name
Date of birth Age Gender
Telephone numbers (land line
and mobile)
Marital status
Religion
Ethnicity
Occupation (current or
previous)
23

Next of kin
Relationship
Address
Telephone numbers (home, work, mobile)
Other contacts (relationship,
address, and telephone
numbers)
Identify who to call first in case
of a crisis and whether they
want to be contacted at night
This has a legal meaning as well as a practical one - the next
of kin may not be the person nominated by the patient to be
telephoned first in case of crisis
GP, practice address, telephone and fax
number
District Nurse, address, telephone and fax
number
Consultants (names and hospitals)
Specialist palliative care nurses (hospital and
community)
Specialist nurses
Social worker
Other key professionals
Clinical History
Medical
Diagnosis
Primary site
Site of metastases
Month and year of diagnosis
Tissue diagnosis (yes/no)
Histology
History of current illness
(With dates/details of any surgery,
chemotherapy, radiotherapy or endocrine
therapy and response or adverse effects of
these treatments)
Past medical history
Previous and current illnesses
Drug history
Allergies
Resuscitation status
This will need updating with each assessment
Include all significant conditions e.g. non insulin dependent
diabetes, ischemic heart disease.
An accurate drug history that is regularly updated is essential.
It is important to check what is and is not working and to go
through patient’s concerns about their medication
Teams have different ways of assessing this - a common way
is for a doctor first to assess whether CPR would be futile, with
a reason; if it is considered futile then many units do not go on
to discuss it with the patient, unless they are known to want
involvement in all clinical decisions. Often the question of CPR
is raised within other discussions about future management
and the aims of all treatments. The notes should say whether
the matter has been directly discussed with the patient and/or
their relatives (who should be named)
24

Current problems
Patient’s current problems discussed,
including physical, psychological, social and
spiritual problems.
Specific tools such as pain assessment tools may be used
Information needs
Preferred language - need for interpreter
‘Would it be helpful for you to have an interpreter from the
hospital or community when we come to talk with you’ 'Are
you comfortable with X from the family translating for you’
Any aids to communication needed e.g.
hearing aid, Light writer.
Current insight
‘What do you know about your illness at the moment’
Amount of information wanted
How information should be conveyed and with
whom present
As a rule do you like to have a lot of information about your
illness, or just really general information “
Are you the sort of person who likes to know everything about
your illness or are you the sort of person who likes to leave
things up to the doctors and nurses’
‘How do you like to get information about your illness - face to
face like this, or written down’ ‘Is there anyone you usually
like to be with you if we have to tell you the results of tests or
discuss treatments’
Wants / does not want copies of treatment
plans
‘Would you like copies of the letters we write to your GP’
Preferred amount of involvement in decisionmaking
and management planning
‘How much do you usually like to be involved in making
decisions about your treatment”
Consent for sharing information with
family/carers
‘Are you happy for your family to know details of your illness or
treatments Is it all right if we answer their questions without
you’
Consent for sharing information with other
professionals/ entering on patient record
system.
‘Are you happy for what we’ve discussed to be shared with
other members of the team/other professionals such as your
GP or District Nurse’
Need to make sure they understand the extent the notes are
shared.
Social
Practical living arrangements
Work
Finances
Type of accommodation(house, flat), access (access to
entrance, stairs), toilet and bathroom (upstairs,
downstairs),transport, mobility in and out of house
Whether in nursing home or residential home, or staying with
relatives
Ability to carry out household duties e.g. preparing food,
shopping, cleaning, laundry, manage pets
Any issues around work
Any concerns about finances
25

Benefits
Legal arrangements
Services involved
Interests
Patient receiving appropriate benefits Including DLA or Carer
Allowance (under the special rules if prognosis less than 6
months)
E.g. Will made or not, Advance Decision to Refuse Treatment,
Lasting Power of Attorney, plans for care/guardianship of
children
This should include all agencies involved when at home and
some detail about the level of services provided. Does the
patient attend day care Are patient and carer aware of the
out of hour services available locally e.g. Rapid Response
Services
Identify things patient has had to give up because of illness
Identify things patient would still like to do
Habits
Psychological
Mood –Depression, anxiety, anger, despair
Coping mechanism for illness
Effect of illness – body image, on
relationships, on interests.
Spiritual
Spiritual needs
Religious needs
Restrictions related to culture or belief system
Rehabilitation needs
Impact of illness on activities of daily living
Smoking, drinking
‘How are you feeling about all this’
Use of the Distress thermometer)
The distress thermometer adapted for EMCN attached as
Appendix E can be used to measure distress but should only
be used by health care professionals who have undertaken
level 2 training
‘How are you coping with all of this’
‘How do you feel when you see yourself in the mirror’
Consider using a spiritual need assessment proforma
Start assessment with an introductory, exploratory
question to determine patient’s existing faith/belief
Someone to speak to: faith leader or minister e.g. chaplain,
vicar, priest, imran, rabbi, church leader or other person
Religious items e.g. religious texts, prayer mat, religious
objects, holy water
Things to help you practice e.g. chapel, prayer room, quiet
room, ablution
‘Do you belong to any church’
Diet. Medicines. Treatment products e.g. blood products
Consider using a scale such as Modified extended Activities of
Daily Living
Ability to carry out personal care e.g. wash and dress,
personal hygiene, manage medication
Dietary needs/preferences
Ability to carry out key transfers e.g. get in and out of bed, on
and off chairs, on and off toilet, in and out of bath/shower
Mobility around house and outside
Does the patient have specific dietary needs e.g. diabetic,
gluten free, kosher, halal, vegetarian
Specific tools may be helpful e.g. nutrition screening
26

Complementary therapies
Complementary therapies patients enjoys.
Physical assessment of the patient
Appropriate assessment by doctor, nurse and
other
health care professionals at the appropriate
times
Carer and family needs
Name and relationship
Insight into illness
Any specific worries or concerns
Level of involvement in care
How other members of the family are coping
e.g. children, elderly parents
Needs – practical, emotional
Sexual relations
Bereavement needs
Goals/Expectations
Summary of problems and plans
Advance care plans
Advance statement
Advance decision to refuse treatment
Personal Welfare Lasting Power of Attorney
See Appendix C for how to draw a genogram. The genogram
should include family, children, and 'any significant others'
Conflicts/communication issues within family
Is help needed talking to children about cancer, does the
school know of child’s relative’s illness, children coping
Sexual difficulties caused by illness or treatment
Patient’s concerns or desires regarding a goal they may want
to achieve e.g attending a family wedding, going on holiday
Expectations during the admission or visit should be checked
regularly
When you think it is appropriate, it is helpful to ask where the
patient would like to die, then to record this and let other
healthcare professionals know
This should be a list of the major concerns of the patient - the
things that are stopping them living in the way they would like.
It is usual to list them in the patient's order of importance.
Need to summarize plans to help with each problem
A statement of wishes and preferences
about their future management or place of care
A specific refusal of treatment(s) in a predefined potential
future situation
Where another person has been given authority to make
health and welfare decisions for a patient when they lose
mental capacity
End of Life care tools
End of life care tools should be implemented as necessary –
Gold Standards Framework, Liverpool Care Pathway
27

GENOGRAMS
Male ( died)
Pregnancy
Female (
died)
X or X Patient
Married
Separated
Twins
Divorced
Cohabitng
Homosexual
Relationship
Adoption
1 st 2 nd 3 rd
X
1st, 2 nd and 3 rd Marriages
Parents
Ron Elsie Sam Tom Jim Mary Jack Joan
X
Live in
Peter Ann Kim Joanna John James Sheila Emma Paul
same house
18 16 14 7 6 22 18 18 14
It is important to keep each generation on its own line
28

Appendix D – PEPSI COLA Aide Memoire
PEPSI COLA Aide Memoire
Consider Resources Refer on if Appropriate
Symptom Control and use of tools
Medication – Regular/PRN
Compliance/stopping non essential
treatments
Treatment/medication side effects
Alternative therapy referral
Cue questions
Elicit a description of problem
Ascertain the effect
History of management
Ask patient if treatment is helping
Has a pain chart been commenced
Is a medication summary available Is it updated
Specialist clinician
Pharmacist
Accredited therapist
Specialist Palliative care team
Hospice
P
Physical
Understanding expectations of patient
Low mood, fears, anxieties, strengths
Coping mechanisms and interests
Altered body image
Relationships with others
Cue questions:
Is anything worrying you
During the last month have you lost interest in things you
usually enjoyed
How do you normally cope in stressful situations
Consider NICE – psychological levels of intervention and
refer on appropriately
Recommendation: level 2 practitioners to use an approved
distress thermometer tool
Have psychological/quality of life/genogram assessment
tools been completed
Follow the EMCN psychological
competency pathway.
Refer on to identified level, 3, 4
practitioners if necessary.
E
Emotional
Patient/family’s cultural background/
ethnic group
Needs related to spiritual wellbeing, ie:
personal support structures, space to
reflect/ pray/quiet time
Patient’s concerns/desires both future
and present
Their worries and challenges
Religious needs
Cue questions (adapted from Peter Speck, questions
2005)
How do you make sense of what is happening to you
What sources of strength do you look to when life is
difficult
Would you find it helpful to talk to someone who could help
you explore the issues of spirituality/faith
Awareness of Marie Curie spirituality competency
framework
Contact local spirituality lead if
requested by patient
Acute trust/hospice chaplains
Palliative out of hours advice line if
available locally
Cancer patient information centre if
available locally
P
Personal
Care for carers
Practical/family support
Occupational/financial welfare support
services
Social & recreational activities
Cue questions
How are things in relation to:
Managing at home etc, work and finance, family and close
relationships, social and recreation
Social services
Local welfare rights advisor via
local cancer patient information
centres if available locally
Citizens Advice Bureau
S
Social
Support
Kindly reproduced and adapted from the GSF toolkit 2004 by The Mount Vernon Cancer Network
29

PEPSI COLA Aide Memoire
Identify the key team as per EMCN
MDT policy
Liaison with MDT/PHCT or the
receiving health care worker
Appropriate patient information leaflets
Have the key-worker/team details been informed to the
patient and recorded in the patient held records
Has a transfer of care form been completed
Notification of the Key Worker sent to relevant Teams as
appropriate
Has the patient been informed of relevant information that
is appropriate at this stage
Has the patient been informed of any local support groups
I
Information
Communication
Discussion around patient choice
Patient dignity
Treatment options/plans discussed
Preferred place of care documented
Advanced care planning
Consent form completed if appropriate
Preferred place of care or advanced care planning tools
used
Kindly reproduced and adapted from the GSF toolkit 2004 by The Mount Vernon Cancer Network
Cancer patient information centres
Patient information prescriptions
Communication to Primary Health
Care Team and entered on GSF
register if appropriate
O
Out of Hours
C
Control
Communication to out of hours service
(OOH)
Access to drugs/equipment
Ensure continuity of care
Are all emergency/out of hour’s numbers available to the
patient/family
Does the patient/family know what to do OOH
Has a transfer of care form been forwarded to the OOH
service If appropriate to your area
Have the recommended anticipatory drugs been prescribed
and dispensed
Follow up care
Rehabilitation support
Patient/carer expectations
End of life care planning (if
appropriate)
Liverpool Care Pathway
GSF register
Is the patient aware of the next steps
Has the patient been informed of the rehabilitation support
services available
Has the patient had an opportunity to discuss their
future/expectations
Has the patient been considered to be registered on the
GSF or LCP (if appropriate)
Out of Hours Service
Palliative care advice line centres,
if available
Liverpool Care Pathway
commenced and symptom
guidelines used appropriately
Specialist allied health
professionals
Intermediate care services
Palliative care teams
Local cancer information and
support services
A
After Care
L
Living with
your illness
Future support - family/patient
Discharge planning
Reassessment
Bereavement follow up
Has the patient/family relevant contact numbers
Is the patient aware of how to re-establish contact
Has the family been told of bereavement services
available
Contact patient information centres
for further information
30

Appendix E – Distress Thermometer
Distress Thermometer
1. PATIENT DETAILS INSTRUCTIONS
Addressograph
This tool is a simple method of identifying patient distress
With the patient’s verbal consent and agreement please help to complete this
form and the relevant action plan (see over) then file this in their notes.
This is not intended to replace clinical assessment and discretion but is a guide to
assisting/managing psychological/psychiatric distress related to cancer.
The NICE guidelines for supportive and palliative care in cancer recommend
screening patients at; diagnosis, commencement / completion of treatment,
survivorship, disease recurrence, palliative care and end of life care as a minimum.
Please indicate at what stage assessment completed
Diagnosis Commencement of
Treatment
Completion of Treatment Survivorship
DOB __/__/____
2. DISTRESS THERMOMETER
Male/Female
Disease recurrence Palliative and end of life
Instructions
Please ask the patient to circle the number (0-10) that best describes how much distress in general
they have been experiencing over the past week
Does this represent a significant deterioration from ‘normal’
Deteriorating No Change Improving
3. CONCERNS CHECKLIST
Instructions
Please ask the patient to tick any of the following that has been a cause of distress over the past
week, including today.
Also ask the patient to identify the most pressing difficulties and to rank these in order of concern
(1 st would be the biggest problem 4 th would be their fourth biggest concern).
Practical Concerns Personal Concerns Emotional Concerns Physical Concerns
Family Issues Appearance Anger / Irritability Breathing
Issues with Health Staff Self-care Nervousness / Anxiety Eating / Weight
Finances / Bills Loss of Independence Low in Mood Toileting
Lack of Information Loss of Role Worry about Cancer Fatigue / Exhaustion
Problems with Medication Sexual/Intimacy Issues Odd Experience Sleep Problems
Spiritual Issues Memory / Concentration Nausea
Others Self-esteem / Confidence Headaches
Fears about Dying Pain
MOST PRESSING CONCERNS
(1 st ) (2 nd ) (3 rd ) (4 th )
4. ACTION TAKEN FOR EACH CONCERN
No Action No Action No Action No Action
Declined Help Declined Help Declined Help Declined Help
Help Given Help Given Help Given Help Given
Referral Referral Referral Referral
Other (state) Other (state) Other (state) Other (state)
Clinician Name Designation Specialty Date
Outcome/Referred to (describe)
Please file with additional information in notes
*Note – Practitioners using this tool must have the appropriate competencies and training in its use.
31

1
2
3
4
Key Concerns / brief description
TO BE COMPLETED BY STAFF
Who is already helping Plan of Action Date Signature
32

Appendix E continued
33

Appendix F – Patient Leaflet
What is it, and how will
it affect my care
Key Worker
35

They might ask the following:
How is the treatment going (if you
are having treatment)
What symptoms are bothering you
How are you getting on with any
medicines you’re taking
How are you feeling, and are you
worried about anything
Have you got the support you need
How are the family coping
Your spiritual needs – are you
managing to make sense of what’s
happening Do you need to talk to
someone If you have a religious faith,
are you able to practice your faith
Practical help: do you have money
worries
What will be done with the information
First, you’ll develop a plan together saying
what will happen next
The plan could include a referral to another
service, or information on benefits or support
services, or some ideas to think through
You should be given a summary of what
you talked about, what you agreed
and things that you or the healthcare
professional will do
The full discussion will be written down
and kept safe in your personal NHS
records, with your medical notes
Sometimes, they will need to share
information, so they can ask other services
to help you, such as Social Services
The healthcare professional will make sure you
are happy about this before they pass on the
information.
© East Midlands Cancer Network 2010
36

Appendix G – Priority 2 – Holistic Assessment of Patient Supportive &
Palliative Care Needs
(To be read in line with EMCN Holistic Needs Assessment guideline/core
deliverables)
NICE Recommendation: Assessment and discussion of patients’ needs for physical,
psychological, social, spiritual and financial support should be undertaken at key
points (such as at diagnosis; at commencement, during, and at the end of treatment;
at relapse; and when death is approaching). Cancer Networks should ensure that a
unified approach to assessing and recording patients’ needs is adopted, and that
professionals carry out assessments in partnership with patients and carers.
Core Deliverables
Network level guidance in place, based on the national HNA specification, including
identifying who (role) is the most appropriate person to undertake assessment in each care
setting
Agreed network-wide paper based (or electronic) tool in place for undertaking assessment.
Note – many networks are using SPARC, Distress Thermometer, PEPSI COLA
Clear communication policy developed for information sharing following the assessment.
Patients and carers are given written information on the holistic needs assessment process
(how and who undertakes it) and also how/when to request one
Process of offering assessment and uptake of assessment documented in patient notes
Competencies in place for roles required to undertake assessment – EOLC assessment
competencies developed by Skills for Health/Care recommended.
Education and training strategy developed for HNA
Education and training programme in place to ensure staff receive training in assessment in
line with competencies
Network wide audits, based on agreed HNA guidance, undertaken.
Action plans in place as a result of the audits, (plans should be used to inform service
developments)
50 % of patients in secondary care offered assessment using network agreed approach
(evidenced by audit being undertaken)
By December 2009
85-100% patients in secondary care offered assessment using network agreed approach
(evidenced by audit being undertaken)
Underpinning Processes:
• The national holistic specification benchmarked against local assessment
tools/frameworks
• The network holistic needs assessment guidance/specification shared with all
provider organisations and communicated to all relevant teams
Keeping abreast of the National Common Assessment Framework and the
implications arising out of that
Improving the Supportive and Palliative Care of Adults with Cancer (2004)
37