Issue 29

Spring 2015 edition Issue No: 29 

Alison wins 

Helpline 

Employee 

of the Year 

award 

£5.00 inc P&P for non-members 

Psychological 

aspects 

of obesity 

in pituitary 

conditions 

New: hospital 

and A&E 

information 

sheets 

Occupational 

Therapy 

in pituitary 

Pituitary life | autumn 2012 

www.pituitary.org.uk

2 

news News 

Introducing 

our new 

Assistant 

Administrator, 

Emily Graham 

Emily joined us in September 

2014. She used to work with 

The Foundation as Fundraising 

& Marketing volunteer and she's 

delighted to be back. 

Emily's originally from Bristol, but 

studied in Glasgow and Cardiff; graduating 

with a degree in English Language. She 

gained experience in the voluntary sector 

through volunteering in various roles 

throughout university. Emily now works 

at our National Support Office in Bristol 

helping with administration of patient 

support, the volunteering programme, 

events, membership and fundraising ■ 

The Foundation out and about 

Steve Harris covered The Foundation’s awareness stand at the National 

Ambulance Clinical and Patient Safety Conference 2014 in September, as well 

as a stand at the Endocrine Nurse Update conference in the same month. 

Steve said that the ambulance event was very well organised and he had a dozen 

people actually ask questions - three of them having relatives with a pituitary tumour 

– he gave them a sheet from our referral tear-off pad and advised them to check out 

our website/Helpline. 

In March, Steve also gave a talk to the ambulance staff in Bristol at the College of 

Paramedics event. There were over 100 paramedics and health professionals in the 

audience and he spoke about hydrocortisone and emergency injections and answered 

all questions put forward. After his talk, two A&E nurses from a Birmingham hospital 

introduced themselves; they said they did not know anything about pituitary disease and 

Steve is now going along to speak at one of their weekly training sessions soon. All 

delegates at the event were given one of our factsheets for ambulance personnel ■ 

contents 

News 2-5 

Local Support Group news 6 

Raising awareness 7-12 

Professional articles 13-17 

Wall of thanks 10-11 

Patients’ stories 18-23 

Introducing two 

new Trustees to 

The Foundation 

Tom Sumpster has recently been 

appointed as a Trustee to The 

Pituitary Foundation. 

Tom is married with two sons, one 

of whom was born with congenital 

panhypopituitarism. Born in Zurich, Tom 

and his family now reside in London and 

his work entails pursuing a finance career 

in the City. Tom has been involved in a 

number of charity fundraising events for 

various charities and is both a keen runner 

and cyclist and general sports enthusiast. 

In April, Tom will be running the London 

Marathon for The Pituitary Foundation. 

Ezra Macdonald is delighted to have 

joined The Pituitary Foundation 

as a Trustee in 2014. 

Ezra is a barrister, practising from 

Pump Court Chambers and works on a 

range of matters including personal injury, 

employment and disability discrimination. 

Before training as a lawyer, Ezra completed 

a PhD in philosophy at the University of 

St Andrews, where he was employed as a 

tutor. Having grown up in Bristol, Ezra 

now lives in Eastleigh - although his work 

continues to take him across the country, 

encompassing much of Wales and the 

south of England. He occasionally finds 

time to cook and practise Kendo ■ 

Pituitary Life | spring 2015

news News 

3 

Helplines Partnership: 

Employee of the Year 2014 

We were delighted that our Endocrine Specialist Nurse, 

Alison Milne, was awarded 1st prize in this category, at 

the 2014 Helplines Awards. 

The judges said: “The passion in this endorsement makes it clear 

that Alison has made a strong impression on her colleagues. Calling 

someone when in distress and being met by a ‘snug duvet’ - what 

more could you ask. Her commitment is also clear in her fundraising 

efforts.” 

Well done Alison, and very much deserved ■ 

London Conference 2014 

Thank you to everyone who joined us for our Pituitary 

Conference on 8 November in Wembley. There 

was a huge amount of information presented and 

The Foundation would like to thank all 12 speakers who 

generously gave their time to make the event such a 

successful one. 

All sessions scored very highly in evaluation. We enjoyed a 

Q&A session and presentations given by the University College 

London Hospitals team, led by Dr Stephanie Baldeweg, which 

were all hugely informative. There were separate sessions for 

younger patients and families; workshops giving information 

on hydrocortisone, the psychological impact, carers’ support, 

benefits and rights. The day was a great chance to meet other 

pituitary patients and carers in a supportive environment and 

lots of delegates commented on how useful it was to share their 

experiences. 

We are pleased to report that the conference was very popular, 

with a record of 251 delegates booked to attend. Evaluation 

showed that no areas of the conference received any ‘poor’ 

ratings, in fact, the majority of ratings given were ‘good’ and 

‘excellent’. 

99% of delegates said they would want to come to a future 

conference. 100% said the day had improved or partly 

improved their understanding of pituitary conditions. 

23% said that they ‘would be prepared to pay more’ while the 

other 76% said that they thought the event was ‘fairly priced’; no 

one said that it was ‘not good value for money’. 

A few quotes from delegates: 

l ‘Meeting other young people with pituitary conditions made 

me feel “normal” again’. 

l ‘The whole day was superbly organised and I would 

recommend other people attending’. 

l ‘Great conference. Nice to meet people and share 

experiences, the day has left me with a new positive outlook’. 

The next conference is likely be held during the first half 

of 2016; however, more details will be announced in a future 

Pituitary Life when arrangements are finalised. We will be looking 

into the possibility of organising new types of sessions, to 

address the topics most commonly suggested by delegates and 

to keep the programme fresh and interesting ■ 


4 News - Awareness Month 

Thank you for all your hard work 

during Awareness Month 

We were overjoyed at your 

phenomenal efforts to 

help us spread awareness 

during October, as so many different 

campaigning and awareness activities 

took place. 

The main focus in 2014 was improving 

the understanding of adrenal crisis and 

participants distributed an amazing 560 

copies of our new adrenal crisis leaflets 

to A&E and ambulance staff! Awareness 

Month exceeded our expectations, as the 

amount of people who requested a pack 

to organise an activity or event came to 

216 and our target was 100! 

The majority of participants got 

involved in our campaign to get 

inadequate administration of 

Hydrocortisone added to the NHS 

‘Never Events’ list. In total we had an 

AMAZING 140 people write letters to 

their politicians; thank you very much 

to everyone who got involved! The 

Foundation also personally wrote to 

various politicians and leading figures 

within the NHS; we also submitted a 

full report to NHS England’s review of 

their ‘Never Events’ framework. We are 

still awaiting some of the politicians’ 

responses and the NHS’s revised list has 

not yet been published, however we will 

keep you posted on developments. Our 

letter writing definitely brought us closer 

to improving politicians’ knowledge of 

adrenal crisis. The Pituitary Foundation 

is keen to keep campaigning on this issue 

if we find out we have not succeeded in 

amending the ‘Never Events’ list when 

the NHS review is published. 

A total of five pituitary awareness 

talks were given during October, three 

awareness walks were held, and six people 

organised awareness stands in their local 

clinics or public spaces. The stands were 

organised by Aberdeen and Liverpool 

Support Groups, several endocrine 

nurses and a radiologist. The Ipswich and 

Suffolk Support Group held an awareness 

day which included information stands in 

the hospital and a cake sale. Pictured here 

is Kelly Pendle, the Ipswich group coordinator 

and the Chair, John Day. 

Another way people got involved was by 

throwing a 20th anniversary party during 

October. For example, Laura Duffield, 

our new Sheffield group co-ordinator 

held a party and she raised an absolutely 

sensational £849 which we are hugely 

grateful for!! Laura had 60 people attend 

and had 26 prizes donated from local 

businesses! Here is Laura pictured below 

on the door at the party greeting the guests. 

Finally, thank you so much to everyone 

who donated to Awareness Month as you 

made all our activities possible ■ 


News 

5 

In memory 

Peter Barker – 

Joint Area Co-ordinator, 

Solent Support Group 

Peter Barker had been unwell for 

some time and very sadly he died 

in October last year. 

Peter was involved with the Solent 

Support Group right from the early days. 

He and his wife Janet came to our very 

first gathering in the auditorium at St 

Mary’s Hospital in 1995. He was always 

positive and together with Janet, they 

were active members of the Committee, 

even offering their home for meetings. 

Peter stepped on-board as Joint Area 

Co-ordinator in February 1999, serving 

right up until his death with only a couple 

of short breaks because of his Presidency 

of the local Lions and his health. 

Through his many contacts in the 

Portsmouth area, Peter was able to arrange 

fund raising opportunities for the group, 

including a sponsored balloon race with 

the winning balloon ‘landing’ in Holland! 

We can remember the quizzes, race nights 

and several of us (and dogs in Pituitary 

Foundation t-shirts) standing collecting 

funds for the group with a fairground 

musical organ. He also organised some 

very interesting speakers for our meetings. 

Peter and Janet always participated in 

our trips to the Isle of Wight to hold the 

annual meetings, which have always been 

appreciated by our members living there. 

Peter organised our very first meeting on 

the Isle of Wight in 1999; 2014 was the 

only year he and Janet were not able to 

join us due to his declining health. We 

always made our IOW trip an enjoyable 

day out and usually ended up at the pub 

for a bite to eat and a pint afterwards. 

We will remember Peter as a cheerful, 

supportive and keen member of the 

Solent Group. He will be greatly missed. 

Thank you Peter, for all you undertook 

on behalf of the Solent Pituitary Patient 

Support Group ■ 

Barry Pilcher 

(29/4/1936 – 03/12/2013) 

Barry’s Widow Edna, would like 

to belatedly thank all their dear 

friends and family for their kind 

donations, which amounted to £350, 

in memory of her beloved husband. 

Barry’s surgery took place in 1971 and 

despite epilepsy, vision loss and health 

complications over the years, he remained 

positive and cheerful. Barry was a gentle, 

caring man and deeply missed by all who 

knew him ■ 

Pituitary 

Study 

update 

As you may remember 

from our last edition, The 

Foundation is working 

with Dr Sofia Llahana, Consultant 

Nurse in Endocrinology at 

UCLH, to conduct a research 

study which aims to explore 

the health status, quality of life, 

educational needs of patients 

with pituitary conditions and 

their families. 

The ultimate objective of 

this study is to gather baseline 

information which will guide future 

research on developing a structured 

self-management programme. The 

plan was to start the study at the 

beginning of 2015, however, there 

has been a delay due to unforeseen 

circumstance and Sofia has informed 

us that the anticipated date to 

distribute the survey will be between 

May and June 2015. The survey will 

be made available on line and postal 

hard copies. We thank you in advance 

for your involvement in this study ■ 

Farewell 

to Neil 

We were sorry to see Neil 

Jefferis leave us in October. 

Neil had been with The 

Foundation for 13 years, working in 

the business unit and was known to 

many. We wish him all the very best 

for the future ■ 


6 Local Support Group News 

This section contains quick 

newsflashes from a few of 

our Support Groups around 

the UK! 

To gain extra information and support 

for you, check our website to see if 

one of our 32 groups meets near you. 

Visit www.pituitary.org.uk, contact 

Rosa Watkin on 0117 370 1316, or email 

helpline@pituitary.org.uk 

SHEFFIELD 

The Sheffield Support Group meets to 

provide a welcoming support network 

for pituitary patients in the area, often 

meeting in local cafes. The group’s new 

Area Co-ordinator is Laura Duffield, 

age 23. Do get in touch to be added 

to the email loop to hear about the 

group's activities; Laura’s contact 

details are on our website, or just ring 

our Helpline. Laura has been very busy 

since she took this role on; there was 

a successful October meeting, with 

another planned for 31 January at 

10am in Frankie & Benny's, The Valley 

Centertainment in Sheffield. Laura 

also held a 20th anniversary party for 

us during Awareness Month raising an 

absolutely sensational £849, for which 

we are hugely grateful!! 

REPUBLIC OF IRELAND 

Sadly this spring, we will be saying 

goodbye to two of our long-standing 

Area Co-ordinators, Brian and Ronnie 

Lawler. They have done an absolutely 

amazing job of running the Republic 

of Ireland Support Group for over 10 

years and they will be greatly missed. 

Brian and Ronnie have given their time 

to run the group and The Foundation 

would like to say a very special thank 

you for all their hard work and 

dedication. Three new volunteers are in 

place to take on this role in the spring 

to keep the group running; details will 

be announced soon. 

YOUNGER PEOPLE & 

PARENTS’ SUPPORT GROUP 

It has been a busy few months for Alice 

and Richard who run the group. The 

Support Group held their first face-toface 

meeting as part of The Pituitary 

Foundation’s London Conference 

which went very well and expanded 

their group members list. Younger 

patients at the conference seemed to 

really benefit from speaking to others 

of their own age about pituitary issues. 

Alice and Richard also kindly attended 

the recent paediatric medical event 

BSPED (British Society for Paediatric 

Endocrinology and Diabetes) to 

represent The Pituitary Foundation. 

With many different endocrine medical 

professionals at the event, it was a great 

opportunity for us to tell more people 

about The Pituitary Foundation and 

the work we do, so thank you to Alice 

and Richard for going along. If anyone 

has any queries about the challenges of 

education, health care, transition, or youth 

specific difficulties, please do contact 

them at aljackman@hotmail.co.uk. 

Or contact the main Pituitary 

Foundation Helpline for a referral. 

above: here are a few of the Kent members 

KENT 

With a new meeting venue in Maidstone 

Community Support Centre, the 

Kent Group is going from strengthto-strength. 

The venue even has tea 

and coffee included and free parking! 

This friendly group meets to support 

pituitary patients and their carers, 

offering information; they are always 

happy to welcome new members so 

please get in touch. (See the website or 

just ring The Foundation’s Helpline). 

The Co-ordinator John Daly’s patient 

story is actually included in this edition 

of Pituitary Life. Come and meet the 

group at their next meeting, 10 March, 

7pm - 9pm. 

Is there a Group in your area? Would 

you like to run a Local Support Group? 

Please contact Rosa Watkin on 0117 

370 1316 or rosa@pituitary.org.uk 

A HUGE thank you to these 

support groups for their recent 

generous donations - Norwich 

& Norfolk donated £63.05, 

Liverpool Group £200, and 

Solent Support Group £1000. 

Thanks so much to all the group 

members for the hard work that 

went in to raising these funds ■ 


Raising awareness 

special 

6 page 

7 

Christmas 

Cards 

section 

We are absolutely delighted to announce that 

thanks to your support, income from our 

Christmas Raffle was once again record 

breaking! 

We managed to raise a phenomenal £6521, a staggering 

£1750 more than last year’s figure and we could never have 

achieved it without your support. Thank you all so much! 

2014 also saw a tremendous year for Christmas card 

sales, with a record amount being sold. 

We are delighted to say that we raised £3821 from the 

sale of Christmas cards! We hope that you liked the designs; we 

will have fantastic new designs ordered for 2015. Our sincerest 

thanks to everyone who ordered Christmas cards ■ 

The winners were: 

1st Prize - Ticket No 18052 - Mrs Ward 

2nd Prize - Ticket No 09249 - Mrs Christie 

3rd Prize - Ticket No 027025 - Mrs Hunt 

4th Prize - Ticket No 09556 - Mr Patel 

Once again, our sincerest thanks to each and every one 

of you who either bought or sold tickets, or both!! 

If you would like to pre-order tickets for our Summer 

Raffle, which again has some truly fantastic prizes, then 

e-mail jay@pituitary.org.uk or call 0117 370 1314 ■ 

Christmas Appeal update 

In December, we launched our Christmas Appeal, ‘Sponsor our 

award winning Endocrine Nurse’. We are delighted to say that, to 

date, a phenomenal £3740 has been raised. 

However, this is still some way short of our £11,000 target. If you 

would like to donate towards this appeal, there is a donation insert, 

along with a freepost envelope so that you can make your donation. 

Alternatively you can either: 

l Text – NURS65 £10 to 70070 

l Online – www.justgiving.com/SponsorTheEndocrineNurse ■ 


8 Raising awareness 

Will 2015 be the year YOU 

do something amazing? 

Our last financial year, 2013/14, was the most successful in the history 

of our charity with a staggering £76,834 being raised through events. 

We would like to say a HUGE thank you to everyone who contributed 

to this success. We saw people running, jumping out of planes, baking, 

climbing mountains, swimming, pruning hedges, cycling, walking, holding charity nights/events, taking on 

100mph zip slides and basically everything that you can possibly imagine! 

This year we want to see if we can raise even more and we know that with your help and support, we can! There are many 

ways in which you can get involved to help raise funds and remember, you don’t have to leave the comfort of your own 

home if you don’t want to; you can simply pop the kettle on and invite some friends round for a cuppa! ■ 

Runs 

Brighton Marathon - Sunday 12 April 

(£35 registration £300 minimum sponsorship) 

Bupa London 10K - Monday 25 May 

Great North Run - Sunday 13 September 

(£35 registration fee £350 minimum sponsorship) 

Bristol Half Marathon - Sunday 13 

September 

Cardiff Half Marathon - Sunday 5 October 

Don’t forget, that you can choose to take on any run that 

you like, these are just a few suggestions. We will be on 

hand to support you every step of the way, no matter 

which run you would like to enter ■ 

Pituitary Skydive 

This June, join many others in taking on this high-octane 

challenge to raise funds to support pituitary patients. 

When it comes to the ultimate adrenaline rush 

nothing can top jumping out of a plane from 

over 10,000ft at speeds of up to 120mph. 

When: Sunday 7 June 

Where: Swindon air field 

Height: 10,000-15,000 feet 

Registration fee: £60 

Suggested minimum 

sponsorship: £395 ■


9 

Springtime Tea anyone? 

Why not take part in our Springtime Tea campaign? 

Simply pop the kettle on, get baking and invite 

some friends round to enjoy some of your 

scrumptious treats. This is a great way of raising funds, as 

you can hold your event wherever you want - whether it is at 

home, school, college, work or in the local community - the 

important thing is the taking part! 

Whether you raise £10, £100 or 

£1,000 it all adds up to make a huge 

difference for pituitary patients. 

We have all the materials that you will 

need to make your event a success, from invites to posters, 

balloons to recipes. To register for any event then please email 

jay@pituitary.org.uk or call 0117 370 1314 ■ 

Building for the future…Brick by Brick! 

We are delighted to announce that since the 

launch of our “Brick by Brick” scheme in July, we 

now have 98 supporters who have sponsored a 

brick in the foundation of your charity by donating on a 

monthly basis. This is a source of unrestricted income for 

the charity, at a time when pharmaceutical funding and 

grants are becoming ever more difficult to source. Thank 

you to everyone who has supported the campaign. 

If you would like to sponsor a ‘brick in the wall’ of The 

Pituitary Foundation, then all you have to do is commit to 

a regular monthly donation; you can donate anything from 

£2 upwards. The amount that you donate will never be 

disclosed and it is entirely up to you how much or how little 

you choose to donate. 

Our goal is to have 150 people supporting this campaign 

by the end of June and we would be delighted if you would 

consider supporting the campaign. 

If you would like to add your name to a ‘brick in the 

wall’ of The Pituitary Foundation then please contact 

Jay@pituitary.org.uk or call 0117 370 1314 and he can send 

you a standing order form. Alternatively, you can donate on 

a monthly basis via Justgiving ■ 


10 Raising awareness 

Walk for Issy: Ian Andrews, 

Wayne Nutland and several 

other friends walked from Clevedon 

to Weston-super-Mare, to raise 

funds towards the Isabella Andrews 

appeal fund and managed to raise a 

sensational £2400! 

School fundraiser: Linda Docherty 

and staff at Kilpatrick Primary School 

raised £70. Sam Henderson made a card 

which pupils paid to open an advent 

calendar-style door with their name on to 

reveal the punchline to a cracker joke. 

Bag packing: Our thanks to the 

Liverpool Support Group 

and volunteers from the area who 

helped us bag packing at Tesco, 

Liverpool, during December. 

Everyone worked tirelessly 

during the day and a whopping 

£700 was raised! Could you 

organise a bag packing day at a 

supermarket in your local area? 

If so then Jay would love to hear 

from you, call 0117 370 1314. 

Our thanks especially to 

Customer Service Manager, 

Becky Martin, who suggested the 

bag pack in support of her mum, 

Leslie Atkins 

Enterprise Rent-a-Car: Our thanks to 

our friends at Enterprise Rent-a- 

Car Wales, who continued their support 

by donating £1500. This follows several 

staff joining us on challenges during 2014, 

such as the Pen-Y-Fan climb and Brecon 

to Cardiff cycle. Several of the daring team 

have also signed up for the sky dive in the 

summer! 

Festive fundraisers: Many people 

opted to hold raffles or ask for 

donations in lieu of cards, far too 

many to mention all but thank you to 

each and every one of you who did 

this in your workplace. 

Photography fundraising: Thanks to 

Kate Dalton who has been selling 

images to raise funds and has raised £171! 

Sponsored wax: Charlie 

Landale and Johnny 

Baldwin did a sponsored 

full body wax in December, in 

support of Charlie’s younger 

brother, pituitary patient Rory. 

Between them, the brave 

pair managed to raise a truly 

sensational £24,573! We would 

like to thank them both for 

taking on this incredibly painful 

challenge and we sincerely hope 

that their hair is beginning to 

grow back now fellas! Pictured is 

Charlie before and after the wax. 

Ice bucket challenge: We would like to 

thank Jill and Paul Lewis who own 

Lewis Forecourts in North Wales, as well 

as staff at Spar stores, for taking on an ice 

bucket challenge in support of pituitary 

patient, Julie Jones, from Anglesey. The 

amazing staff managed to raise a whopping 

£500! 

Fundraising for a colleague: 

James Humble organised a 

series of fundraising events at work 

whilst colleague, Drew Precious, 

was in hospital having pituitary 

surgery. His amazing colleagues 

really rallied round to show their 

support and thanks to initiatives, 

such as Christmas jumper days, cake 

sales and much more they raised a 

whopping £1275. 

Christmas fundraiser: Our Windsor 

Fundraising Group leader, Gemma 

Simpson, organised a Christmas fayre in 

December and had a very special guest - 

Father Christmas himself turned up. This 

terrific event managed to raise a whopping 

£1107.92 



11 

Cake sale: Thanks to Sarah Edney 

and her colleagues at npower who raised 

a marvellous £394 by holding a cake 

sale; we have to say that those cakes look 

delicious 

Beaujolais day fundraiser: Our 

sincerest thanks to Introbiz 

business networking in Cardiff, 

who chose us as their charity, for their 

annual Beaujolais day celebrations. A 

packed house of 150 guests were treated 

to some fine food, fine wine and some 

truly amazing auction lots. In total £2700 

was raised at this event and we thank 

them for their continued support 

Charity day: The 

Overtones super fan, 

Chrissy Ridgway, 

held a charity event 

in her local town 

of Swadlincote and 

managed to raise a 

brilliant £205. 

Sponsored silence: Our thanks to 

pituitary patient Lisa Morley who 

went 24 hours without speaking and 

managed to raise £400 in the process. 

Halloween: Many thanks to our 

Area Coordinator, Helen Grant, 

and students at the Department of 

Biomedical Engineering, University of 

Strathclyde for holding a fancy dress 

day as part of Pituitary Awareness 

Month, helping to raise £122.63 in 

the process! 

Christmas jumper day: We would like to 

thank our friends at Lewis Ballard 

accountants in Cardiff for holding 

a ‘Christmas jumper dress-down day’ for 

us and managing to raise a brilliant £50 

in the process. Our sincerest thanks to all 

staff for their support. 

Striding to success: 

Gerard Thompson 

took on the Shakespeare 

10K run for us and 

managed to raise a 

staggering £1329.96!! Not 

bad, considering this was 

Gez’s “warm up” for the 

Great North Run 2015! 

Good luck Gez. 

Those boots were made for 

walking: Our sincerest thanks to 

former Solent Local Support 

Group Treasurer, Bev Lees, who 

stepped down after eight years and 

decided that she would go with a 

bang, by taking on a 24 mile walk! 

Bev managed to raise a phenomenal 

£570.70 in the process. Thanks for 

your efforts Bev and thanks for all you 

did as Treasurer during your time with 

the group, you will be sorely missed ■ 


12 

Professional Raising awareness articles 

FREE Will writing service 

This is a pilot scheme that we 

are running to offer you, our 

valued members, something in 

return for your continued, loyal and 

committed support. 

The service is completely FREE of 

charge to you and there is absolutely no 

obligation on you whatsoever. Each Will 

normally costs at least £100 to write, but 

Compass’ directors, (one of whom is 

affected by a pituitary disorder and are also 

members of The Foundation themselves), 

have kindly offered a significantly 

discounted rate to The Foundation to help 

our charity launch this Free Will Writing 

Scheme - which is how we can offer this 

opportunity of a free Will to you. However, 

there is only a limited number of FREE 

Wills available, on a first come, first served 

basis. If you would like to take us up on this 

offer, then we advise you to get in touch as 

soon as you possibly can. 

Why a free Will writing service? The 

Pituitary Foundation’s aim is to ensure 

that we can continue to be there for future 

generations of pituitary patients when they 

need us most, and as part of this vision we 

are investing in our charity’s future through 

implementing a new Legacy Strategy. 

What we are offering 

You would make your Will over the 

telephone, in the comfort and privacy of 

your own home. (As we have members 

living all over the country it would be 

impossible for a small organisation 

like us to offer a face-to-face service). 

Compass are specialist estate planners 

and have over 20 years’ experience in the 

field, so you can be assured of a quality, 

professional service (www.compassadvisors.co.uk). 

They will talk you 

through each step to make the process as 

easy and simple as possible. 

The FREE Will comprises of a Basic 

Will which is suitable for an individual 

whose assets are below the Inheritance 

Tax threshold of £325,000. Instructions 

for your Will would be taken by telephone 

appointment or e-mail, whichever is 

most convenient for you. If you already 

have a Will that you would like to update, 

then we would recommend writing a new 

Will with Compass, which again would 

be free to you as part of this offer. 

Why gifts in Wills are so vital 

to our work 

Gifts in Wills play a vital role in allowing 

us to plan for the future and in the last five 

years, gifts in Wills have accounted for 

20% of our total income. Last year alone, 

35% of our income was made up of gifts 

in Wills. 

We are sure that you will agree that The 

Pituitary Foundation continues to grow 

from strength-to-strength and each year we 

support more and more people, whilst also 

raising increased awareness. 

The fact is, that without gifts in 

Wills, quite simply this would not be 

possible ■ 

Next steps 

If you would like a free Will, please 

either call or e-mail Compass Wills 

and Estate Planning quoting the 

reference “Pituitary” as soon as 

possible: 

l Telephone: 01792 893200 

(Office opening hours: Mon-Fri 

9am-5pm) 

l email – 

alyson.dyer@compass-wills.co.uk

news Professional articles 

13 

Psychological aspects of obesity in 

pituitary conditions 

Dr Sue Jackson 

Findings from the 2008 Needs 

Analysis highlighted a number 

of concerns and identified the 

unmet psychosocial needs of pituitary 

patients. For example: 

l Issues regarding identity suggested 

a long and unsupported struggle to 

come to terms with a profoundly 

changed image of self 

l Changes to appearance were felt as 

a loss, with individuals experiencing 

diminished control and confidence to 

deal with these changes 

l Infertility and loss of libido were 

evident within relationships/marriages, 

which had a further impact in terms of 

participants’ overall sense of identity 

l Post-Traumatic Stress symptoms were 

evident for many patients after dealing 

with the initial impact of diagnosis and 

subsequent surgery 

l A need to accept or make adjustments 

in the juggling of relationships, 

lifestyle, and hormonal management, 

was felt by many to be inescapable and 

emotionally demanding 

While many articles have focused on 

the stresses associated with living with a 

pituitary condition, such as problems with 

short term memory, to date, we haven’t 

really focused on the problems associated 

with living with a changed appearance. And 

yet, this is arguably one of the most key 

issues facing many pituitary conditions (just 

look at the first two items on the list at the 

start of this article). It would also be possible 

to suggest that item three (in respect of loss 

of libido), might also be related to problems 

adjusting to a changed appearance. 

Certainly, there is research which suggests 

that people who are experiencing problems 

with their appearance also have problems 

with physical intimacy. 

Psychologists often refer to “body image” 

rather than appearance. Grogan (1999) 

defines body image as the mental picture 

that people have of their physical self, 

but also, and equally importantly, it refers 

to the mental picture they believe others 

have of them. Body image influences our 

interactions with other people making it 

a major factor in social and interpersonal 

relationships. A change in physical 

appearance can be perceived as a loss, 

and be associated with profound grief. 

Looking different can be associated with 

feelings of embarrassment, shame, social 

anxiety, social avoidance, aggression, 

and poor self-esteem. Researchers have 

reported that at least 48% of the adult 

population who have a visible difference 

(i.e. their body image is different to 

that of the culturally expected norm) 

experience, at least, borderline levels of 

clinical anxiety. 

What “culturally expected norm” do we 

have in relation to body image? Currently, 

for women, the norm is for tanned, thin 

bodies with long (and preferably) lightcoloured 

hair. For men, the current norm 

seems to be for a very pronounced muscle 

definition, with broad shoulders and slim 

hips. It does change, hence the use of 

the word “currently”. There have been 

times when fuller figures for women were 

the norm. (It’s interesting to reflect that 

Marilyn Monroe at a size 14 would be 

considered too fat to work in the media of 

today!) The obesity associated with some 

of the pituitary conditions means that 

the condition and/or its treatment moves 

people away from the cultural ideal of 

slimness. This can be associated with a lack 

of confidence, increased stress, anxiety and 

depression. 

Our cultural norm might be for slimness, 

but I think it’s rather ironic that a focus on 

one’s appearance is considered a form of 

vanity that should be discouraged rather 

than encouraged. Certainly, I’ve heard it 

said that the change in appearance should 

be a minor issue compared to the other 

problems that a pituitary condition brings 

with it. I disagree. By not allowing the 

issue to be discussed, we cannot properly 

understand it; and without understanding, 

there can be no real way forward to a 

better body image. 

To be overweight in our society is to 

experience stigma and discrimination of 

various kinds. You can’t make jokes about 

race or religion, but jokes that are based 

on appearance are, for reasons that I find 

mystifying, socially tolerated. I think some 

of it boils down to the fact that people 

who don’t have a weight problem think 

that obesity is basically down to a lack of 

self-control on the part of the individual. 

Which is far from being the case. There are 

many factors which play a part in people 

becoming overweight; research to date has 

suggested the following: 

1. Life events as a distraction from selfcare 

(Jackson et al, 2011), where major 

life events, such as family members 

being ill, being involved in a car crash, 

caring for sick children, mean that any 

kind of self-care gets put on the back 

burner. In this situation, weight gain 

often goes unnoticed until something 

happens to bring it into sharp focus. 

2. Dysfunctional backgrounds (Gilmartin, 

2012), for example, living with someone 

who has a drug or alcohol dependency, 

or living in a situation which is unsafe, 

either because of poverty, or because 

of domestic violence. 

3. Sequelae of dysfunctional backgrounds 

(Woititz, 1983). This research mainly 

refers to adults who were brought up 

in some kind of dysfunctional family 

situation and the longer term impact 

their background has on them. 

4. Shame and low self-esteem in families 

(Bradshaw, 1988); particularly common 

in families where family members have 


14 Professional articles 

problems with drugs and alcohol, but 

can also be associated with families 

where domestic violence is/has 

occurred and/or as a result of living in 

poverty. 

5. Consequences of a lack of compassion 

(Gilbert, 2009). Research suggests 

that early experiences of kindness 

are important if children are to learn 

how to self-sooth when they become 

distressed. A lack of kindness leaves us 

dependent on external forms of selfsoothing 

(such as drugs, alcohol, food, 

retail therapy, sex etc.) which only 

work for a short term and which are 

ultimately destructive. 

I think there is an additional issue 

missing from the above list; people can 

be very scared of their more challenging 

emotions, and I think this can be a 

particular problem for individuals with 

a pituitary condition. It’s very hard to 

have any positive feelings towards a body 

that you don’t trust or like anymore, 

because it’s let you down. The regular 

medical monitoring can lead you to 

feel that it might do something else 

you aren’t expecting and in that climate 

of fear and distrust, it’s hard to accept 

and work with your body. But it’s not 

something that you’re supposed to talk 

about. The medical model basically 

sees the body and mind as two separate 

entities, and most consultations with 

healthcare professionals are focussed on 

returning your biological body to optimal 

functioning, not about dealing with the 

distrust that you might be feeling as a result 

of your personal medical history. If you 

can’t talk to the healthcare professionals, 

then who can you talk to? Your friends 

and family will just be grateful that they 

still have you in their lives and they won’t 

think that you might not be happy with 

the way you look, or see it as a minor thing 

that you’ll get over given enough time. 

People can feel very alone with a stress, 

loss and grief that they aren’t supposed 

to be feeling. There are all kinds of ways 

that we can avoid feeling things; eating is 

one of them, along with the consumption 

of alcohol and other drugs, retail therapy, 

gambling, sex etc. Comfort-eating tends 

to be undertaken to medicate difficult 

or distressing feelings; dieting in this 

situation can lead to a significant increase 

in distress, so why would you do it? 

It is commonly believed that if you 

provide people with the necessary 

knowledge and skills, they will be able to 

manage their weight despite an unhealthy 

environment and in the face of a food 

industry producing low-cost, highly calorific 

food marketed in increasingly sophisticated 

ways. But high emotional arousal in the 

form of depression, anxiety or frustration 

inhibits our ability to problem-solve, learn 

or generate new ideas thus rendering all 

knowledge and skills useless. No wonder 

that weight loss is notoriously difficult to 

achieve and maintain! Added to which, 

lifestyle modification programmes alone, 

or supplemented with pharmacological 

agents, generally achieve only modest and 

often temporary effects. 

Additionally, our bodies have not yet 

adapted to modern living, so they are 

engineered to hold onto their fat stores 

once they’ve created them. Not only that, 

but with so many other things fighting for 

our attention, we have to reach a tipping 

point where the cost of our existing 

behaviour is such that making a change is 

essential. (Making such a change is going 

to take a lot of effort, time and resources 

and for a human, it’s got to be worth 

making such a commitment.) Always 

assuming that you’re at that tipping 

point, you’ve not only got your biology 

to work against, but also the way you see 

the world. In psychology we call them 

“perceptual biases” and they are brilliantly 

illustrated by Brian Wansink in his book 

‘Mindless Eating’. For example, he shows 

how people eat in relation to the size of 

the container they’re eating out of; and 

how easy it is to lose track of what you’ve 

eaten (if the empties or remains aren’t 

there and your attention is distracted you 

won’t know how much you’ve eaten). 

Humans also have a short term focus. We 

tend to focus on the most immediate needs 

that require addressing and the more basic 

the need, the more short term the view that 

you take. For some people, for all kinds 

of reasons, they never get to address their 

longer term goals. We’re also programmed 

to want to see quick results. So if you’ve 

been “good” for a week, you want some 

physical evidence of that, and not just the 

bathroom scale moving 1lb to the left. 

Cognitive Behavioural Therapy (CBT) 

has been used to help people with their 

weight management issues, however, there 

is growing evidence that this approach 

does not work, and better results are being 

seen from Compassion Focussed Therapy 

(CFT) and Acceptance and Commitment 

Therapy (ACT) ■ 

Your safety in A&E and in hospital 

Recently, a number of patients 

or their families have told us 

of problems arising when a 

pituitary patient had to go to A & E 

or was admitted to a general hospital 

ward. These issues include: 

l Hospital staff not understanding 

what adrenal insufficiency or diabetes 

insipidus is 

l Patients and their families not being 

listened to when they know that they 

needed hydrocortisone 

l Confusing diabetes insipidus with 

diabetes mellitus 

l Patient’s medication being given too 

late or at wrong times (due to ward 

drug rounds and patient’s medication 

locked away) 

l Hospital staff not aware of an adrenal 

crisis and the need for an emergency 

injection 


Professional articles 

15 

l Hospital staff not alerting the 

endocrinologist on call even though 

asked, or at times begged! 

A recent example of this was told to 

us by the wife of a patient, as follows: 

I am writing in response to the article “Hospital 

management of hypopituitarism”, in the autumn 

edition of Pituitary Life. In 2011 my husband 

had a tumour removed from his pituitary gland. 

He came in one lunch time, blew his nose, and 

these excruciating pains started in his head. To 

cut a long story short, he was taken to the local 

hospital, where he started to lose the sight in his 

left eye; we were then both rushed to the nearest 

hospital with a neurosurgeon, approximately 90 

miles away, where a tumour the size of a duck 

egg was removed from his pituitary gland. He 

never recovered the sight in his left eye, and it 

also left him on various medications, including 

hydrocortisone. We could not fault the care. 

Recently, my husband, who is also 67, needed 

a right hip operation, just like the gentleman in 

the article, but unfortunately for my husband, 

he did not experience the same care and 

understanding. 

He had to arrange his own pre-op assessment, 

just five days before the operation, and took in 

all the correspondence issued by The Pituitary 

Foundation, which was photocopied for the 

relevant staff. We consulted with the Consultant 

who assured us he would be carefully monitored. 

We also had a meeting with the anaesthetist, 

when I asked what hydrocortisone my husband 

would be receiving. He replied “I have treated 

many people on steroids”, a statement which 

greatly concerned ourselves. 

No doubt he was carefully monitored during 

the operation, but afterwards there seemed 

to be a complete lack of understanding and 

communication. The morning after the operation, 

with the epidural wearing off, my husband going 

downhill fast and no hydrocortisone had been 

administered, he had an ‘Addisonian Crisis’, and 

had to ask for the injection but was told they did 

not have one available on the ward. Eventually 

however, they did manage to obtain it from the 

pharmacy and stabilise him. If my husband 

vomits, it is an immediate hydrocortisone and 

sickness injection to save his life. He has never 

managed to do this himself. Oral medication does 

not work. This was all explained prior to the 

operation. 

When I visited him in the afternoon he was flat 

on his back and feeling and looking terrible, but did 

manage to say that he was fed up trying to explain 

his condition to the ward staff. Eventually, I went 

to see the staff nurse in charge as my husband was 

popping steroids as and when required, which was 

frequently. On his visit to hospital I told him to 

keep his steroids in his toilet bag, and keep it quiet, 

but I felt at this time I should let someone know 

what was happening. 

He could not blame the ward staff, they were 

all kind, considerate and helpful, but no one 

seemed to understand his condition, which is very 

frustrating, and they were certainly not aware 

how to manage him ■ 

New: A&E and 

hospital ward staff 

information 

To help address the issues patients and families 

may face, The Foundation has produced two 

letters which clearly explain to hospital staff 

the relevant conditions and your needs. These 

are: 1) To A&E and hospital ward staff – Adrenal 

Insufficiency patient and 2) To A&E and hospital ward 

staff – Diabetes Insipidus patient. 

Both, or either of these can be ordered or downloaded 

free of charge from our website shop, under ‘Free 

resources section’ from February. Alternatively, we can 

email you these as attachments if you contact helpline@ 

pituitary.org.uk - please put in subject line, ‘Hospital 

letters’. 

We also have a Pituitary Patient Profile for bed 

notes form available. This is a template form you can 

download or we can email you, for your endocrinologist 

to complete (and sign) with your personal condition 

details and needs ■ 

Medical 

identification 

products 

Patients taking hydrocortisone or prednisolone often 

ask us about the wording to be engraved on medical 

ID products. The Foundation suggests the following 

wording, as a guide: ‘Hypopituitarism on steroid replacement 

and at risk of adrenal crisis’ 

Please note: Individual patients should discuss with their 

own endocrinologist to see if details of other deficiencies and 

problems are worth including also. 

There are various products available, which can be seen 

on our website page: www.pituitary.org.uk/information/ 

living-with-a-pituitary-condition/useful-products/ 

medical-identification-products/ 

Some of these ID products do entail a compulsory 

or optional membership fee, so please check the most 

suitable product for you. If anyone would like to share their 

experiences of their ID product being recognised (or not) etc., 

we will aim to publish these in a future edition. Please contact 

pat@pituitary.org.uk ■ 


16 Professional articles 

Occupational Therapy 

Hi everyone; I am Sammy Harbut, 

a pituitary patient and a member 

of The Pituitary Foundation 

since June 2010, when I was diagnosed 

with Cushing’s disease. I am also a 

volunteer Helpline operator for The 

Foundation. 

By 2010, I had been ill for several years 

and my quality of life was considerably 

compromised. I was lucky enough to 

be given a leaflet about The Pituitary 

Foundation during my first hospital stay, 

but received no further advice or support 

about my recent diagnosis, how to manage 

the emotional impact of my illness, or 

how it would affect me and my family. I 

was desperate for more information, but 

my consultant (who I get on very well 

with) concentrated purely on the medical 

aspect of my illness, the surgery I needed 

and medication I would have to take 

subsequently. 

I contacted The Foundation and 

requested several booklets to help me 

make sense of what was happening to 

me, all of which I read from cover-tocover, 

several times. I felt so much more 

informed about the medical aspects of 

Cushing’s, what to expect from surgery 

and the potential life I could lead 

subsequently and was very grateful for 

the support. 

Fortunately, my surgery to remove my 

rather large adenoma (14mm - which is 

referred to as the ‘pesky lodger’ in my 

house) at the Wessex Neurological Centre 

at Southampton Hospital in October 2010 

was successful and so began the slow road 

to recovery. During my time recovering 

after surgery, I had several setbacks and 

became increasingly aware of experiencing 

tiredness I had never felt before. I also 

became aware of having days when I felt 

‘unwell’, but found it difficult to explain 

and verbalise how I felt. Additionally, my 

moods and emotions were unpredictable, 

which I found difficult to manage at times. 

I was struggling to comprehend what 

had happened, felt I should have been 

constantly happy because the tumour had 

Pituitary Life | spring 2015 

gone, yet was concerned for the future. 

However, I did have days when I felt 

I could achieve anything, ‘could conquer 

the world’!; it was during these times that 

I began to think about my professional 

career, as I had been a Probation Officer 

for 15 years, a job I had loved, but was 

becoming increasingly disillusioned with. 

Using the bravery I had employed to 

endure the intrusive medical procedures, I 

believed that I if I could go through transsphenoidal 

surgery, I can do anything! I 

returned to work, but could only manage 

two days a week in probation, finding that I 

was emotional and exhausted most of the 

time. What upset me even more however, 

was the lack of tolerance from managers, 

together with their unwillingness to 

understand or appreciate how pituitary 

conditions change lives. However, at 

this time I took the decision to apply to 

become a Helpline volunteer, and was 

interviewed by Pat Mc Bride, who I felt 

instantly ‘understood’ my frustrations and 

difficulties, but also my desire to make 

the most of my life, taking part in things 

which are important to me, and achieving 

things. 

Professionally, I decided to leave the 

Probation Service, and began a three 

year degree, training as an Occupational 

Therapist (OT). I began at Bournemouth 

University in September 2012, and will 

complete my degree in June of this year. I 

was attracted to this profession, as the idea 

that ‘occupations’ (or more commonly 

known as activities) which we all engage 

in, are important for maintaining health 

and wellbeing struck a chord with me, 

following my illness and treatment. 

As I have progressed through the 

course, I have been struck by how the 

medical profession approaches illness, 

sometimes with little consideration about 

how a person’s life is affected, physically 

and mentally, and how this impacts 

further on them and their families. I have 

continued to work as a volunteer, and my 

experience taking calls has demonstrated 

how lives for pituitary patients are 

challenging and frustrating, and how 

our quality of life can be reduced by 

the restraints our conditions impose. 

Occupational therapy aims to address such 

issues by taking a whole-person approach 

to both mental and physical health and 

wellbeing, enabling individuals to achieve 

their full potential (British Association 

of Occupational Therapists (2011). 

Advice and guidance is given for OT’s 

working with individuals who have longterm 

health conditions, assisting people 

to achieve life satisfaction by improving 

their ability to undertake activities that 

are important to them. Helpline calls 

consistently demonstrate that pituitary 

patients are affected significantly by their 

conditions, (some more seriously than 

others), but there is no OT input from 

Endocrinology departments, advising and 

supporting people who struggle to engage 

in activities which are important. 

Consequently, I approached Pat Mc 

Bride about the possibility of having 

an educational stand at the national 

Conference in November last year, and was 

delighted when I was given permission. I am 

passionate about The Pituitary Foundation, 

and proud to be a volunteer and member 

of this organisation. I am also passionate 

about Occupational Therapy, with its 

distinctive focus on everyday participation 

and performance (Baum et al, 2009). I 

prepared a PowerPoint presentation and 

provided information and resources for 

conference attendees to take away and 

was pleased with the reaction of delegates, 

with many people visiting the stand, asking 

questions and asking for more information. 

The PowerPoint presentation slides from 

that day are included at the end of this 

article, but I will elaborate a little about 

certain aspects of the presentation. It is my 

hope and intention that anyone reading this 

article will be optimistic about seeking out 

services to help with the everyday things 

which pituitary patients find challenging, 

either because of physical restrictions, or 

mental health challenges (and sometimes 

both).

Professional articles 

17 

So what exactly is 

Occupational Therapy, and 

what do OT’s do? 

OT provides practical support to 

people, looking at ways to overcome 

barriers preventing them from doing the 

occupations (activities) that matter to them. 

OT helps increase people’s independence, 

self-esteem and satisfaction with life, by 

considering both their physical and mental 

well-being. Occupations can be described 

as daily or regular activities which provide 

us with a sense of purpose and identity 

enabling us to live an independent a 

life as possible (British Association of 

Occupational Therapists, 2011). These 

activities encompass self-care tasks and 

independence at home, social and leisure 

activities, working and having a role in 

life, which we all have as husbands, wives, 

partners, siblings, employees, friends or 

carers. By considering people holistically, 

OT’s explore what is meaningful to 

people, providing purpose in their lives, 

exploring with them the skills they already 

have and developing new ones to help 

manage their conditions and retain quality 

of life. OT’s can provide environmental 

assessments, liaise with employers, and 

advise on adapting activities which may 

seem impossible to do. OT’s don’t limit 

themselves to what people actually DO, 

but also why, where, and how well they do 

it and how important it is to the individual. 

Pituitary patients and OT 

Common difficulties experienced 

by pituitary patients include: fatigue, 

depression, loss of stamina, forgetfulness, 

loss of confidence, memory problems, 

employment/work problems, pain/ 

discomfort and reduced quality of life. 

All of these lead to loss of functioning, 

contributing to reduced participation in 

personal, social and community activities. 

As a result, this can have a detrimental 

impact on a person’s motivation, belief 

in themselves and identity, which further 

exacerbates the mental health difficulties 

of depression and anxiety about the 

future. People have a ‘biological need to 

engage in occupations, which impacts 

directly on their health and wellbeing’ 

(O’ Donoghue and Mc Kay, 2012), 

but often, fatigue or feeling generally 

‘unwell’ interfere with this functioning. In 

addition, significant personal adjustment 

is required to come to terms with this 

life event, the medical appointments, 

hospital treatment, constant monitoring 

and reliance on medication, in addition 

to coping with the impact on close family 

and friends. 

The good news however, is that 

OT’s place much value on people being 

able to achieve their highest level of 

independence, which can be seen not only 

as the ability to be functionally self-reliant 

in activities, but also the ability to have 

control over our own lives (Bonikowsky 

et al, 2012). I know how fatigue can 

impact on the lives of pituitary patients, 

both from my own experiences, and 

from Helpline calls I have received, but 

I have learnt that OT’s work with other 

client groups who experience fatigue ( e.g. 

patients living with cancer, chronic pain 

and chronic fatigue). As OT’s are trained 

in both physical and mental health, they 

are ideally placed to understand the link 

between them, and are able to provide 

strategies to manage and overcome these 

conditions. It may be a fact that a pituitary 

condition is life-long, but this does not 

mean that it has to signify the end of a 

life, rather the beginning of a new and 

different one, and one which should still 

be fulfilling. 

encouragement 

I hope this article has encouraged 

pituitary patients and their family and 

carers that although being diagnosed with 

a pituitary condition means a different 

‘life path’ than one they have imagined for 

themselves, there are professionals who 

are trained and equipped to support us 

get the most from our lives. The challenge 

is to seek out help through GP surgeries 

and endocrine centres that we attend, by 

raising awareness of the implications for 

daily functioning our conditions impose 

and requesting referral to an OT if you 

feel you would benefit. 

On a personal level, being diagnosed 

with Cushing’s disease was definitely 

NOT part of my life plan, but I would not 

change anything about my circumstances 

now. It gave me the courage to leave a 

job I was no longer enjoying, brought me 

to University to train for a profession I 

not only value, but can see the value of, 

and importantly it introduced me to the 

Pituitary Foundation which I consider a 

very special ‘family’ to whom I am proud 

to belong. I look forward to the future, 

whatever that may bring, but know that I 

will continue to be passionate about both 

the Foundation and OT, as for me they 

have restored my lust for life, despite the 

difficulties my condition imposes ■ 

Sammy Harbut 

References 

Baum, C., Foster, E. and Wolf, T. 

2009. Addressing performance and 

participation in occupational therapy: 

the importance of cognition. British 

Journal of Occupational Therapy 72 (4), 

143. 

Bonikowsky, S., Musto, A., Suteu, 

K.A., MacKenzie, S. and Dennis, 

D. 2012. Independence: an analysis 

of a complex and core construct in 

occupational therapy. British Journal of 

Occupational Therapy 75(4), 188-195. 

British Association of Occupational 

Therapists (2011). What is Occupational 

Therapy? London: British Association 

of Occupational Therapists. Available 

from: http://www.cot.co.uk/ 

ot-helps-you/what-occupationaltherapy 

http://www.cot.co.uk/ 

ot-helps-you/what-occupationaltherapy 

(Accessed 19th December, 

2014). 

O’Donoghue, N. and McKay, E. 

2012. Exploring the impact of sleep 

apnoea on daily life and occupational 

engagement. British Journal of 

Occupational Therapy 75 (11), 509-516. 


18 

Patients’ stories 

My life so far – Lance’s story 

When I was five years old, I 

used to run around like any 

other five year old; I was very 

energetic, into martial arts - just like my 

dad, brother and sister. My life changed 

for the very worse. For the following 18 

months I suffered ill health; it started with 

constant nausea at school; tremendous 

headaches, which were followed by 

eyesight problems, the nausea turned to 

vomiting and I was being sick every day. I 

missed such a lot of school, every time I 

managed to get to school, my mum would 

be picking me up, and taking me straight 

to the doctors; in 18 months I saw five 

different GPs, also different opticians as 

my eyesight was so bad. I used to tell 

the teacher that everything keeps turning 

black, it made me very worried. 

headaches 

Every time my mum took me to the 

doctors about my symptoms, they said 

it was migraine, or my mum should take 

care of reading food labels - check for the 

‘E’s’ as this can cause headaches, or the 

doctors said that I may be not enjoying 

school, but I enjoyed school, when I was 

well. My mum told me (that she was told 

by the doctors) that she was being over 

protective of me, this made her so angry, 

that no doctors were taking her seriously. 

Then, one day, when my mum took me 

to school, I said “mum I can’t see you 

properly”, she said let’s go to the doctors 

again. The doctor looked into my eyes 

with a light, he said there was nothing 

wrong; “Ok” she said “I will take him 

to a different opticians this time”. The 

optician said that she could see something 

behind my eyes that should not be there. 

I remember my mum crying, then we 

were sent to the eye hospital, where they 

confirmed what the opticians told us. I 

had a whole day with my mum and dad, 

visiting other hospitals; I had a MRI, I was 

crying asking mum what’s wrong with me, 

she says she tried desperately not to show 

me her tears. It was hard. 

The doctor came out to us and asked 

me to stay with the nurse, I remember 

the nurse gave me her watch to look at. 

My mum and dad were told I had a brain 

tumour, on my pituitary gland; we did not 

know what a pituitary gland was at the 

time. I remember saying to my mum, “am 

I going to die?”, she said “No love”, and 

cuddled me. 

traumatic time 

We were sent to Frenchay hospital neuro 

ward to see Prof Coakham, who was going 

to be the doctor that would operate on my 

brain. I had the first op to take pressure 

away from the cyst that same evening - the 

cyst was as big as a golf ball, I was told. 

The tumour was removed exactly a month 

later. It was a very traumatic time for me 

and my family. 

further operations 

I am 25 years old now and have had a 

further 12 operations to my brain; I also 

had a stroke in 2010. The operations I’ve 

had included three shunts fitted, (two 

VP shunts and now I have a VA shunt). 

I also have Diabetes Insipidus and I 

take hormone replacements because 

my pituitary gland was damaged. I have 

recently been told that my tumour is 

growing again - I had radiotherapy as a 

child, but this will be upgraded to Gamma 

Knife Radiotherapy, so I’m hoping for this 

to work; the attachment should be here in 

the New Year, 2015. I really would be so 

grateful if this works for me; I would love 

to have some sort of normal life, so I can 

at least get back to work. 

I have started a web page called 

‘Craniopharyngioma 20s & 30s’, as this 

is the name of my tumour. I have 77 

members now; it’s really good to talk to 

them, as we all have a lot in common. 

If anyone reading this, that has a 

Craniopharyngioma and are in their 20s 

& 30s, you’re welcome to join the group 

on Facebook. Thank you ■ 


news Patients’ stories 19 

Barbara’s story 

I’ve been a member of The Pituitary 

Foundation for 17 years. My problems 

began when I was 32, 37 years ago. My 

six-day heavy periods fell to two scant days, 

so off to the GP I went. He had no idea 

why this was happening and for eight years 

fobbed me off with ‘it’s emotional and all in 

my mind’! At my insistence, he referred me 

to the Royal Naval Hospital, Gosport, as I 

was then married to a Royal Marine. 

I returned for my blood test results, 

bearing in mind 30 years ago very little 

was told to the patient. The Commander 

asked me if I wanted to get pregnant 

again. I thought this an odd question, 

but I said “No”. I was happy with my 

daughter aged 10 and my son aged 14. 

He said “good”; because the results 

showed it would be million to one chance 

if I wanted any more children. He told 

me I would undergo a D & C operation 

to make sure there wasn’t any gynae 

problems. I went down for the operation 

at 10am and returned to the ward at 6pm, 

heavily sedated, but not a well person. 

heart failure 

As usual, I wasn’t told anything, but later 

learnt I had suffered heart failure during 

surgery. Six weeks later, I discovered I 

was about 18 weeks pregnant and had 

been pregnant during the operation. A 

miracle for sure! When the Commander 

heard I was pregnant, he told me I 

would now make the right hormones 

and there would be no need for further 

investigations. Wrong! 

prolactinoma 

I gave birth to my lovely son Jamie in 

May 1981. In April 1985 I noticed I 

was getting milk out of my breasts. I 

went to my GP and this time he said, 

“Now I know what the matter is”, but 

didn’t enlighten me. He sent a letter to 

a Southampton endocrinologist, who 

visited Poole Hospital once a month - can 

you believe that? After talking to him, 

(not the most pleasant nor forthcoming 

of doctors) I was sent for x-rays. In those 

days there was only one CT scanner, in 

London. At my next appointment he told 

me I had a prolactinoma, a minute benign 

tumour and I would need surgery to 

remove it. I was admitted to Southampton 

Neurosurgical Unit November 1985 and 

underwent surgery a week later. I had 

many more tests because some doctors 

were not sure if it was a tumour or not. 

The neurosurgeon decided it was and 

off I went to surgery. Once again, I had 

problems and arrived back on the ward 

eight hours after I went down. Within an 

hour of waking, during the evening I knew 

I had diabetes insipidus. I couldn’t believe 

anyone could pee out so much! It went on 

all night until I was given medication the 

following morning. 

A week after surgery I fell into a coma 

for a few days; again, I was never told why, 

although my 15 year old daughter Steph 

and sister-in-law visiting me were told I 

might not last the night and were told to 

keep talking to me, in an effort to wake 

me up. All I remember is someone saying 

“Amanda’s been kidnapped”. I thought 

Pituitary life | spring 2014

20 Patients’ stories 

“who the heck is Amanda”, not realising 

I was unconscious. Three days later when 

Steph was sitting by my bed I asked who 

was Amanda and why was she kidnapped? 

Apparently Amanda was kidnapped by 

aliens in Dynasty! Then, the cut where the 

muscle had been taken out of my leg, got 

infected with an abscess. So my original 

week-long stay lasted four weeks. 

more surgery 

I was home three days and admitted to 

Poole Hospital vomiting up blood. The 

Prednisolone steroids for the infection 

had caused ulcers in my stomach. 

Christmas came in a haze of pain and 

discomfort and I returned to see a GP, 

who was a new young lady doctor. I told 

her what I had gone through and how I 

felt, saying I had a metallic taste in the 

back of my mouth. She told me to stop 

worrying about myself and to get on 

with things! I phoned the neurosurgeon, 

who told me I would be admitted five 

days later, for more surgery. He thought 

I had a CSF (spinal fluid) leak. I didn’t 

tell my family I was having more surgery 

and thought I’d phone them once it was 

over. 

Nothing was further from the truth. 

What the surgeon found was a large 

abscess in the pituitary cavity. He said, 

had I listened to the GP, I would have 

been dead within a week. I needed 

antibiotics and Prednisolone steroids 

through a main line in my chest for four 

weeks. I must admit, my family went mad 

when they found out I had gone through 

all that without letting them know. But it 

was with the best of intentions and I did 

have a spinal fluid leak. 

two years to get better 

It took me about two years to get better 

and for three years after that, I had a 

reasonably good life. Then an idiot hit 

the car behind me at 70mph, which then 

hit me; I hit the car in front and so on. 

The accident caused severe whiplash and 

unbeknown to me, the small piece of the 

pituitary gland which had been left, ‘fell 

off ’. 

American Pituitary Network 

For the next five years I really struggled. 

I underwent major gynae surgery, minor 

gynae surgery; I had so many abscesses on 

my body and lost 18 teeth with abscesses/ 

infections, all due to my immune system 

being compromised. I was really poorly. 

I wrote to Robert Knutzen, President 

of the American Pituitary Network; 

he got things moving. Robert Knutzen 

faxed my letter to Professor Besser at 

St Bart’s Hospital, London. He phoned 

me one afternoon and asked me who my 

endocrinologist was, I told him I didn’t 

have one. He said “don’t be silly woman, 

you must have one?” I told him not to 

call me silly, as I didn’t have one. He said 

that was disgraceful and to get my GP 

to write to him. From that letter to my 

admittance to St Bart’s was eight weeks. 

I was in St Bart’s two weeks, undergoing 

every test possible, plus scans etc. The 

outcome was I had pan-hypopituitarism 

- that was 18 years ago. 

weight gain 

Unfortunately, things have not gone 

right on many levels. The hydrocortisone 

caused me to gain over three stone in 18 

months. My new endo Dr Akker said my 

dose needed raising again - now more 

than five stone overweight and hating it. 

After being knocked unconscious nine 

years ago after hitting my head on the 

glass patio doors, (daft I know), it resulted 

in diabetes insipidus, from brain damage - 

my original DI had stopped nine months 

after my second operation. 

I’ve suffered from infections - too 

many to mention. In the past eight years I 

have been admitted to hospital 34 times; 

14 emergencies with low sodium levels 

and UTI’s, 19 emergencies with Cyclical 

Vomiting Syndrome - cause unknown - 

needing admittance to hospital asap and 

vomiting for many hours. Two more 

gynae operations, DVT’s and PE’s, on the 

leg and lungs 18 months ago. One would 

say “a bit of a mess!”. 

a terrible time 

When I had Cyclic Vomiting Syndrome, 

I had a terrible time getting paramedics 

to believe I needed to be taken to A 

& E, as soon as possible. One time in 

London, three paramedics took well 

over an hour to decide to take me to 

the hospital. I remember arriving there, 

seeing the doors to A & E, then nothing 

else. That was just gone 7am, I came to 

about 4pm in the afternoon and it was 

Christmas Day! I looked at Steph and 

asked if I was still in A & E, she told 

me no, that I was in a private room on 

a ward and I’d been there hours. In fact 

Steph, Jamie and his girlfriend Rachel 

had been back to the flat, had breakfast 

and lunch, Steph had come back on her 

own whilst Jamie cooked the roast, bless 

him. The young doctor on call was lovely, 

but knew hardly anything about pituitary 

diseases. She knew about Addison’s, but 

not pituitary adrenal insufficiency, which 

was scary. It important to stress to all 

HC patients in any crisis, they have to 

stick to their guns and get to the hospital 

ASAP! 

wonderful GPs 

But, as I’ve been told, my Northern 

grit and Liverpudlian sense of humour 

have seen me through. Also the love of 

my children, family and friends, along 

with the most wonderful GPs, who 

have supported me through - seeing 

10 different endos and just been there 

for me, to thank them for getting me 

through all of this. The members of The 

Pituitary Foundation, who I have got to 

know over the years, Gail Weingartner, 

the first one I met and Pat McBride; they 

have become such great friends. Without 

them all I would not be here today ■ 


news Patients’ stories 

21 

John’s story 

I 

was diagnosed with a pituitary 

tumour when I was 48 and told it 

had quite possibly been there for 

over twenty years and most probably 

caused by a bang to the head. This led 

to a largely futile exercise of looking back 

and trying to pinpoint the moment that it 

all began. The photo on the right is me 

30 years ago and as I am now. I tend to 

agree with you that I am a better looking 

bloke now! 

As a surprise late baby, I was the 

seventh child in a family of five girls and 

two boys, in a working class family in 

Renfrewshire, Scotland. My mother died 

when I was five and at the age of seven 

I went to live in Thurso, Caithness with 

one of my married sisters. My brotherin-law 

was a nuclear chemist working at 

Dounreay Power Station and I thought 

the moors, hills, harbour and beaches 

were the best adventure playground ever. 

We moved south again when I was 

twelve and I spent my teenage years in 

East Kilbride. I grew tall and strong 

and although I suffered many a bump 

or scrape on the sports field, there is no 

one incident that I can recall that would 

suggest that I had potentially started the 

growth of a pituitary tumour. 

All was fine until I was 20, when 

I suffered a perforated ulcer after a 

Hogmanay party. It took me about six 

months to fully recover and I decided to 

strike out and head down south to the 

‘big smoke’. For many Scotsmen, London 

proves their downfall, but for me it was 

my making. 

career took off 

My career in Reinsurance took off quickly 

and my personal life flourished. By my 

thirties I was married to Sheena, with 

two children and was a company director. 

In my mid-thirties I began to put on 

weight which I put down to the amount 

of travelling and dining out that came 

with the job. To combat this, I upped 

my exercise regime and went to the gym 

every other day. At 36, I became General 

Manager of a new company and, blessed 

with a high level of energy, I often flew 

back overnight from board meetings in 

the US to go straight to the London office 

and work all day. I was able to function 

on just a few hours’ sleep. I moved from 

this job to run a Lloyd’s syndicate for five 

years before taking up a senior position in 

a company in Bermuda at the age of 47 

and a year later I took ill. 

periods of exhaustion 

On reflection, I was increasingly having 

periods of exhaustion and would try 

recovering my energy by sleeping late 

on a Saturday morning, something that 

I had not done since I was a teenager. 

My eyesight didn’t seem right either, so 

I booked an eye test with the optician in 

Bermuda and although they couldn’t find 

anything wrong they gave me some 

eye drops to see if that would help. 

A couple of weeks later on holiday 

in Majorca, I was driving the car and 

as we approached a roundabout 

Sheena started yelling. I braked 

immediately and narrowly 

avoided a car that had come 

onto the roundabout at high 

speed. I hadn’t seen it at all. As 

it transpired, my entire peripheral 

vision had gone. Although we didn’t 

know this at the time it confirmed 

to us that something was very 

wrong. Needless to say, Sheena drove for 

the rest of the holiday! 

Before we flew back to Bermuda 

we had to attend a week long business 

conference which was a nightmare. Trying 

to outwardly maintain the appearance 

that all was well yet not being able to see 

properly was very difficult. 

sunny Bermuda 

On our return, I had a visual field test 

which verified the absence of peripheral 

vision and sent for an MRI, which 

revealed a pituitary tumour pressing on 

the optic nerve. Bermuda didn’t have 

the resources or expertise to deal with 

this type of condition so I was referred 

to the Lahey Clinic in Boston for a full 

diagnosis. We left a warm and sunny 

Bermuda and arrived in Boston on a 

bitter cold mid-October day. As I recall, 

we headed straight to the shops to buy 

enough warm clothes and boots to last 

for the long weekend we thought we 

would be there for. 

We met with Dr Freidburg, Chairman 

of the Lahey Hospital 

Trust and one of 

the pre-eminent 

neurosurgeons 

in the US. After 

a day of further 

tests, the diagnosis 

was confirmed. Dr 

Freidburg 

Pituitary life | spring 2014

22 Patients’ stories 

that I did not agree with but didn’t have 

the energy to fight, so I resigned. It offers 

little consolation that the company failed 

soon after. 

We left Bermuda and returned to our 

house in Kent and I attempted to form a 

new company but it was evident that my 

drive and energy had gone and I shelved 

the project. After a year of doing no work 

I felt I needed to do something and took 

a junior position with a broker in London, 

which was mostly enjoyable - although the 

90 minute commute less so! The company 

was taken over two years later and I 

happily accepted redundancy. By now I 

had taken stock of our finances and knew 

that if we ‘tightened our belts’ I could 

afford to give up work in my mid-50s and 

appreciate that I was incredibly lucky to 

be able to do so. I could also play a bigger 

part in looking after my then two year old 

grandson and found this to be great fun 

and immensely therapeutic. 

On a whim three years ago, I 

decided to attend the annual Pituitary 

Foundation Conference in Sheffield. 

Apart from enjoying the high standard of 

presentations, I particularly got a lot from 

talking to others about their symptoms 

and coping mechanisms and unusually 

for me, began to open up about my own 

feelings. After the conference, I contacted 

Pat McBride at The Foundation to inquire 

about joining the Kent Support Group, 

only to discover it had disbanded five 

years earlier. Surprisingly, I found myself 

offering to become the AC for Kent. The 

Kent Support Group is now two years old 

and has helped me greatly in coping and 

I hope it does likewise for others. It is an 

informal group and we share information 

and experiences over tea, coffee and 

occasionally cake! 

The last year has however, not been so 

good for me personally. I was diagnosed 

after a routine blood test to have CLL 

(Chronic Lymphocytic Leukaemia). 

It has been difficult to reconcile after 

having one major illness, that I now 

have another. So far, I have suffered 

few symptoms other than an increase in 

chronic fatigue and drop in appetite so 

have not needed treatment as yet. 

Secondly, six months ago I had severe 

back problems after some heavy work 

in the garden – it transpired I had two 

fractured vertebrae. It was ultimately 

caused by osteoporosis, a consequence 

of taking steroids (prednisolone) longterm 

without taking appropriate calcium 

supplements and vitamin D. Thankfully, 

my back is recovering, albeit slowly. 

It’s been a journey of highs and lows 

but I try my best to focus on the highs. 

I have a wonderfully supportive family 

and am determined I will soon be back 

to taking 10 mile walks through the Kent 

countryside - stopping of course, for a 

pint of local ale en-route ■ 

Zac’s Story – A mother’s perspective 

Pituitary Life | spring 2015 

18 January 2013 was both one of 

the happiest, yet also emotionally 

heartbreaking days of my life. 

Having been lucky enough to already 

have had a beautiful healthy little boy called 

Jake in 2008, 18 January 2013, saw the 

arrival of our second gorgeous boy, Zac. 

Having had a relatively uncomplicated 

C-Section birth, Tom and I were the 

happiest parents alive. I remember clearly 

crying with tears of joy and emotions 

were running high as I held, cuddled and 

kissed our gorgeous new son. However, 

something was not quite right from the 

start. The look of slight confusion on 

the doctor’s face when Zac was born... 

“Congratulations Mr. and Mrs. Sumpster 

you have a beautiful little...”. When the 

Consultant was not sure whether we had a 

boy or girl in our arms, alarm bells should 

have started ringing, but, caught up in the 

incredible moment and enveloped with 

a feeling of unconditional love, I didn’t 

think anything of it. Until, about four

Patients’ stories 

23 

hours after the birth, Zac turned blue and 

stopped breathing. I screamed like I never 

have before and immediately Zac was 

rushed into the neonatal unit at Chelsea 

Westminster where he (and I) remained 

for the next two weeks. 

most difficult time 

The ensuing fortnight was the most 

difficult time that I have ever endured 

in my life and even now, I find it very 

hard to think about it without becoming 

very emotional. I just could not hold 

it together and spent day after day and 

night after night in floods of tears as the 

doctors tried to work out what was wrong 

with Zac and why he stopped breathing. 

Was it his heart, his lungs, his brain? 

Finally, after waiting for what seemed like 

an eternity for all the blood test results 

and at least three different attempts at a 

synacthen test (a test which uses a specific 

chemical to test how well the adrenal 

glands make cortisol by stimulating the 

adrenal glands and then checking to see 

if they respond), the results showed that 

there was no cortisol produced. I very 

quickly learnt that cortisol is a critical 

hormone which has many important 

functions including helping to regulate 

blood pressure, regulate the immune 

system, helping the body to respond to 

stress and helping to balance insulin in 

regulating the blood sugar level. Without 

the right levels of cortisol in the body you 

can become severely ill and it can be life 

threatening. Following the MRI scan 

results things then finally became clearer 

and the scan confirmed what the doctors 

had suspected as a result of his very small 

genitals and the negative synacthen tests - 

Zac had congenital hypopituitarism. He 

has a very small anterior pituitary gland 

and an ectopic posterior pituitary with 

no visible pituitary stalk and is deficient 

in several hormones - Growth Hormone, 

LH/FSH, ACTH (cortisol) and thyroid. 

diagnosis confirmed 

With the diagnosis confirmed, I felt a 

huge sense of relief that someone at last 

now knew what the problem was but also 

utter confusion as I had no idea what this 

condition was or what it meant for Zac’s 

future. I was absolutely distraught and felt 

so lost and helpless as I was unable to 

make things better for our darling baby. 

I hated myself thinking that this was all 

my fault and my head was swimming with 

negative thoughts and questions of “why 

us?” What had we done wrong and why 

had this happened? I was so angry, upset 

and just didn’t know where to turn or 

what to do. 

daily cocktail of medications 

Having got out of hospital and back 

into my own home and able to see my 

eldest son Jake again (whose little face 

just kept me going through all this), we 

settled into a routine of giving Zac his 

daily cocktail of medications and things 

began to get easier. The black cloud lifted 

and things seemed brighter. I read up on 

the condition and approached things with 

a more logical mind. I could see that, so 

long as I remained on top of his meds, 

things would be fine - at least for now. 

I was so conscious that I wanted life to 

continue as normal for the sake of both 

Jake and Zac and that we should continue, 

as a family, doing the things that we had 

always done. Somehow we would fit Zac’s 

daily GH injection, his daily thyroid dose 

and his four times-a-day hydrocortisone 

dose into our daily routine, whether we 

were at home or away. In between regular 

hospital checkups and blood tests with 

the endocrine team at both GOSH and 

Chelsea Westminster Hospital, annual 

cortisol profiling where blood is taken 

every two hours for 24 hours and surgery 

to bring down his testicles (enlarged with 

a previous course of sustanon) we have 

been on holiday with the boys several 

times to Greece, France, Cornwall and 

even to a ski resort. 

little monkey 

Zac is now two years old and is a cheeky 

adorable little monkey who has tantrums 

like every other two year old, goes to 

playgroups, singing and gymnastics 

classes, who loves Peppa Pig and Thomas 

the Tank Engine, loves to explore, is into 

everything and most of all loves to annoy 

his older brother! To look at him when 

he is well, you would have no idea that 

he has a rare, potentially life threatening 

condition. 

happy years 

That is not to say that life is easy all the 

time. In his two very happy years he has 

also had four adrenal crises, which have 

resulted in hurried calls to the ambulance 

service in the middle of the night and 

subsequent hospital stays in the High 

Dependency Unit. Two of these crises 

happened when we were on holiday away 

from home and the most recent crisis 

resulted in a 10 day stay in hospital and 

subsequent insertion of a Hickman line 

in order to administer daily IV antibiotics 

for three months. Each time Zac goes 

into crisis, I still find it so hard to remain 

strong and it never gets any easier to see 

your little baby just so floppy and lifeless 

and in need of emergency treatment. But 

Zac is Zac and we all love him dearly – 

he is perfect to us and I wouldn’t change 

anything about him for the world. I just 

hope that medicine continues to advance 

as quickly as possible and although I 

am realistic that there will be no miracle 

cure for hypopituitarism in our lifetime I 

hope that medical advances enable Zac to 

lead as full and happy and easy a life as 

possible. 

Tom and five friends are running 

the London Marathon this year to 

raise money for Zac and The Pituitary 

Foundation which we hope will 

help towards future research and 

awareness of pituitary conditions. 

www.justgiving.co.uk/zacsumpster ■ 


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The views expressed by the contributors are not necessarily those of The Pituitary 

Foundation. All information given is general - individual patients can vary and 

specific advice from your medical advisors should always be sought. 

We do not endorse any companies nor their products featured in this edition. 

© 2015 The Pituitary Foundation 

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• Registered charity number 1058968 

The Pituitary Foundation 

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helpline@pituitary.org.uk www.pituitary.org.uk 

Editor of Pituitary Life: Pat McBride 

Working to support pituitary patients 

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