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Issue 36

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Summer 2017 edition<br />

<strong>Issue</strong> No: <strong>36</strong><br />

New text service<br />

and webinars<br />

Pituitary Conference<br />

details and<br />

booking<br />

Building<br />

resilience to<br />

bounce back<br />

Occupational<br />

therapy in pituitary<br />

Five patients’<br />

stories<br />

Benefits of being<br />

a member<br />

New steroid<br />

treatment for<br />

children under<br />

6 years<br />

www.pituitary.org.uk


2<br />

news News<br />

Contents<br />

Pituitary webinars<br />

launched for our members<br />

News 2-6<br />

Local Support Group news 7<br />

Professional articles 8-14<br />

Patients’ stories 15-20<br />

Raising awareness 21-22<br />

Wall of thanks 23<br />

New:<br />

Helpline<br />

Text service<br />

We are delighted to announce<br />

our new Text<br />

service will be up and<br />

running at the end of June 2017.<br />

This service will complement our<br />

phone and email Helplines, and you<br />

will be able to text us from your<br />

mobile to ask us patient information<br />

questions. The service will run<br />

between 9am and 5pm, Monday<br />

to Friday and we will endeavour to<br />

reply to you, as a text appearing on<br />

your mobile, within 24 hours – often<br />

sooner. If you send a text over the<br />

weekend, we will text you back on<br />

the next working day.<br />

Your text to us will be charged at<br />

your standard network rate. If you<br />

have free text messages as part of<br />

your contract, your text to us will be<br />

free.<br />

Please note that the text service is<br />

not an emergency service and if you<br />

need to speak to someone or if you<br />

have longer, more complex questions<br />

we advise that you call or email us.<br />

We do hope that this new service<br />

will offer you more convenience.<br />

We will be announcing the number<br />

to text us on our website soon ■<br />

The word ‘webinar’ is a mix of ‘web’ and ‘seminar’. A webinar is a live event<br />

held on the Internet which is attended exclusively by an online audience.<br />

Participants can join and follow webinars via a PC, Mac, tablet or smartphone,<br />

and can hear the speaker through an audio feed. There are slides you will see on your<br />

screen, whilst the presenter talks about these. You can also take part by typing in<br />

questions and these will be answered through, or at the end of, the presentation by the<br />

speaker.<br />

We have already held three successful webinars – Fatigue Management, presented by<br />

Sammy Harbut; Psychological impact of weight, presented by Dr Sue Jackson and Sick<br />

day rules for adrenal insufficiency patients, presented by Alison Milne.<br />

The forthcoming webinars will be (at time of going to print):<br />

• Cushing’s 22 June (Prof John Newell-Price)<br />

• Acromegaly 27 July<br />

(Prof Peter Trainer)<br />

These sessions will be on<br />

our website and Facebook<br />

page, with an invitation<br />

link for you to accept and<br />

join in. All webinar<br />

recordings will be<br />

available on our<br />

website after they’ve<br />

taken place ■<br />

Iread with interest about the<br />

diagnosis of growth hormone in a<br />

recent edition. My own experience<br />

is that I have had growth hormone<br />

injections for four years at a cost of<br />

£600 for each injection.<br />

Six months ago, feeling grim with joint<br />

pain and extreme fatigue, I decided that<br />

I couldn’t feel much worse, and as I’m<br />

80 years of age, I would have no more<br />

injections. I can’t say I feel wonderful<br />

but I don’t have the side effects of the<br />

drug which lasted a week, every month<br />

(stomach pain and extreme diarrhoea).<br />

When it was time for my regular<br />

appointment six months later and blood<br />

tests had been done, I was told that the<br />

growth hormone had not changed and<br />

was still within the acceptable range.<br />

My doctor then remarked that the<br />

treatment I had received over the years<br />

probably hadn’t been necessary ■<br />

Pituitary life | summer 2017


news News<br />

3<br />

National Pituitary Conference<br />

Saturday 25 November 2017 Birmingham<br />

‘Your pituitary journey: for newly-diagnosed patients, diagnosed patients, and loved ones’<br />

Come along to our Conference to learn more about pituitary conditions from expert speakers and to meet with over<br />

200 other patients and their families.<br />

must contact the venue directly, please see<br />

the enclosed booking form for details.<br />

The Conferences are very popular so<br />

to avoid disappointment we recommend<br />

booking early. Delegates from our past<br />

Conferences say:<br />

The morning session will be ‘Your<br />

pituitary journey: diagnosis &<br />

treatment’ which will include<br />

presentations from specialist medical<br />

speakers from Queen Elizabeth<br />

Hospital Birmingham and others<br />

from across the UK, including Dr Niki<br />

Karavitaki (Senior Clinical Lecturer<br />

and Consultant Endocrinologist), and<br />

Sherwin Criseno and Andrea Mason<br />

(Specialist Endocrine Nurses). We<br />

are also welcoming, Dr Steve Ball<br />

(Consultant Endocrinologist and<br />

DI specialist), and, Dr Sue Jackson,<br />

(Chartered Psychologist) plus many<br />

more speakers will be announced in<br />

the coming months!<br />

In the afternoon, you’ll have the<br />

opportunity to attend two from a list of<br />

eight different workshops covering<br />

NEW topics. These include adrenal<br />

insufficiency and steroid regimes<br />

(Including emergency injection), paediatric<br />

and transition endocrinology, living<br />

with hypopituitarism for women (covers<br />

conditions and issues affecting female<br />

patients including fertility), diabetes<br />

insipidus, living with hypopituitarism for<br />

men (covers conditions and issues affecting<br />

male patients including testosterone<br />

and fertility), carers and families session,<br />

psychological impact of pituitary<br />

conditions, and our younger patients and<br />

parents meet up and talk session. We also<br />

aim to have an employment and benefits<br />

information stand available.<br />

The Conference is being held at<br />

Birmingham Conference & Events Centre<br />

(BCEC), adjacent to the Holiday Inn<br />

Hotel, and just a two-minute walk from<br />

Birmingham New Street train station.<br />

There has been no price increase to<br />

our membership delegate rate, and<br />

the early bird rate for members is just<br />

£32. A two course lunch is included.<br />

After the event we are once again<br />

holding our popular social evening for<br />

delegates. This is optional and tickets cost<br />

£30. The evening is a great chance to<br />

meet others and includes a three course<br />

meal, quiz and disco.<br />

For full information and to book<br />

just visit the website, contact 0117<br />

370 1310/1316, or email enquiries@<br />

pituitary.org.uk. There is a booking<br />

form enclosed within this magazine if<br />

you would like to post us your booking.<br />

To book B&B and the social evening, you<br />

“My son always so much<br />

looks forward to his day at<br />

Conference when he feels<br />

‘normal.’ The speakers were<br />

all so empathetic, supportive<br />

and so committed to the<br />

development of the care of<br />

pituitary patients.”<br />

“Listening to all the speakers my life<br />

took on a new positive aspect, I felt as if<br />

I had come from a very dark room into<br />

the day light. I have not felt that good<br />

for a very long time. I will now take on<br />

board what I have learnt so I can slowly<br />

move towards a more enjoyable way of<br />

life. Thank you all so very much, you<br />

were there for me again.”<br />

“Really enjoyed<br />

the quiz and games,<br />

it was a lovely<br />

evening amongst<br />

friends.”<br />

“Social evening really<br />

added to an enjoyable<br />

week-end. Many<br />

thanks to those who<br />

arranged this”.<br />

Pituitary Life | summer 2017


4 News<br />

Membership Notice<br />

• Our member-only<br />

magazine Pituitary Life<br />

straight to your door three<br />

times a year – with in-depth<br />

features on all pituitary<br />

issues, patient stories<br />

and articles from medical<br />

professionals<br />

In the last issue of Pituitary Life we told you that after<br />

several years at the same rate we were going to be<br />

increasing the cost of membership. The new rates for<br />

this year will be as follows:<br />

Concession ........................................................ £15<br />

Individual .......................................................... £25<br />

Joint Membership ............................................... £35<br />

ROI and Europe rates, and online rates will also see a<br />

similar increase.<br />

What do I need to do?<br />

For those who make a one-off payment each year - nothing! Just wait for your renewal letter as normal and<br />

this will include options for making your payment. If your membership payment is already due, please visit our<br />

website or call the office to make your payment.<br />

If you currently pay by standing order we ask that you kindly contact your bank to let them know that you<br />

would like to increase your payment. By doing this you will be helping us enormously and we will be able to<br />

spend our time and resources supporting the pituitary community. Otherwise we will write to you to let you<br />

know how you can amend your payment. Please don’t hesitate to get in touch if you are unsure what your new<br />

rate will be.<br />

We will also be introducing the option to make your payment by direct debit soon. More information about<br />

how you can go about doing this will be included with your renewal letter.<br />

Pituitary life | summer 2017


News<br />

5<br />

What benefits do I get as a member of<br />

The Pituitary Foundation?<br />

As a member you will always be the first to receive the latest<br />

pituitary news and information.<br />

Other great benefits are:<br />

• Our member-only magazine Pituitary Life straight to your<br />

door three times a year – with in-depth features on all<br />

pituitary issues, patient stories and articles from<br />

medical professionals<br />

• Monthly e-bulletin to keep you in the loop<br />

between issues of Pituitary Life<br />

• Be the first to be told when anything from<br />

our publications library is updated, or<br />

if there are any medical updates or news<br />

stories we think you should see right away<br />

• Exclusive access to webinars on a range of<br />

medical and wellbeing issues<br />

• Discounts to The Pituitary Foundation Conference<br />

and other special events<br />

On top of these great benefits, as a member you are at the<br />

heart of our organisation and everything we do. You are<br />

helping to fund our vital work and you can influence the future<br />

of The Foundation.<br />

Of course, you don’t have to be involved in this way but if you<br />

are keen to contribute further there are plenty of opportunities:<br />

• Join our database of people willing to participate in<br />

research studies<br />

• Take part in our regular needs analysis studies to better<br />

understand the needs of the pituitary community<br />

• Take part in focus groups<br />

• Share your story and pituitary journey to help<br />

others understand the true impact of their<br />

condition<br />

• Join in with our campaigns – we usually<br />

have three unique campaigns each year and<br />

rely heavily on our supporters to join in and<br />

spread the word to raise as much awareness<br />

as possible<br />

• Fundraise to support the crucial work of<br />

The Foundation<br />

• Volunteer with us<br />

• Make friends at your Local Support Group<br />

• Have your say in our future – as a member you will have<br />

voting rights and an invitation to our GM – an opportunity<br />

to hear the key achievements of our charity and plans for<br />

the year ahead and to feed in your thoughts and opinions.<br />

How will you spend my membership fee?<br />

The generosity of our members enables us to fund our essential<br />

support services. It helps us to support as many patients as<br />

possible through their journey.<br />

Your contribution means we can continue to support the 33<br />

support groups up and down the country and respond to over<br />

2,000 requests each year for practical information and support.<br />

It means that we can keep the content on our website up-todate<br />

and relevant for the 64,000 people who use it each month<br />

as a vital support service.<br />

Your contribution will make sure that no pituitary patient has<br />

to face their diagnosis alone.<br />

Life Membership<br />

For a one-off payment of £350 you will receive all the benefits of<br />

membership for as long as you wish to receive them – for life!<br />

Please call the office if you are interested in becoming a Life Member or you would<br />

like more information about how you can pay the membership fee such as paying in<br />

monthly instalments.<br />

*Offer only available to existing Pituitary Foundation members ■<br />

Join us today<br />

as a Life Member and on<br />

top of all the usual benefits<br />

you will receive your own<br />

hard back journal – a quality<br />

notepad designed exclusively for<br />

The Pituitary Foundation*.<br />

Pituitary life | summer 2017


6<br />

News<br />

Campaigns and policy work update<br />

The Foundation takes part in regular policy work, campaigning on key issues<br />

facing pituitary patients to improve care and services. This regular article in<br />

the magazine keeps our members informed about our recent activities, and<br />

gives details about how to get involved.<br />

■ Our spring campaign was<br />

launched in late March and is<br />

raising awareness about Sheehan’s<br />

syndrome and Lymphocytic<br />

Hypophysitis. These are rare types<br />

■ We were invited to feed in to the<br />

review of the JRCALC (Joint<br />

Royal Colleges Ambulance<br />

Liaison Committee) guidelines for<br />

adrenal crisis by the Association of<br />

Ambulance Chief Executives. This was<br />

an excellent opportunity to improve<br />

current guidance as these guidelines<br />

will be used by all ambulance staff in<br />

the UK.<br />

■ We supported Rare Disease Day<br />

at the end of February by raising<br />

awareness via social media and<br />

publishing news articles, we also<br />

attended events at The Welsh Assembly<br />

of pituitary conditions that can occur<br />

during child birth. Visit the website<br />

to read five NEW patient stories<br />

written by women specifically for<br />

this campaign who wanted to help<br />

us spread awareness. We are asking<br />

people to get involved to help us<br />

spread awareness on social media and<br />

by distributing our new factsheet about<br />

these conditions to child birth support<br />

organisations. The Foundation has<br />

been working hard to contact relevant<br />

organisations during the campaign,<br />

such as The National Childbirth Trust<br />

and antenatal groups. Our campaign<br />

webpages will help you find out more<br />

about these rare conditions and allow<br />

you to see how you can support this<br />

worthwhile campaign which will run<br />

for a couple more weeks.<br />

and The House of Commons to fly the<br />

pituitary flag.<br />

■ Meeting with the Society for<br />

Endocrinology: The Pituitary<br />

Foundation recently met with The<br />

Society for Endocrinology (SfE)<br />

for an update meeting. One exciting<br />

announcement from SfE is that there<br />

is hopefully going to be a new universal<br />

steroid card launched this year and The<br />

Foundation would help promote this<br />

as part of our adrenal crisis awareness<br />

summer campaign launching soon.<br />

The emergency card, for use in primary<br />

and secondary adrenal insufficiency,<br />

has been developed by the SfE and<br />

would replace the current blue steroid<br />

card. Details of the card, emergency<br />

endocrine guidance and translations<br />

into other languages for patients to<br />

download if travelling abroad can be<br />

found at the link below. We will keep you<br />

updated when we hear if the card is to<br />

be approved by the NHS. http://www.<br />

endocrinology.org/clinical-practice/<br />

clinical-guidelines/adrenal-crisis/<br />

■ We have been continuing to speak out<br />

for pituitary patients in our role on the<br />

Clinical Reference Group in England,<br />

and as a member of the Welsh Cross<br />

Party Group for rare diseases which<br />

we are supporting setting up, as well as<br />

through the other rare disease networks<br />

we are involved with.<br />

■ For any queries relating to campaigns<br />

and policy work please call 0117 370<br />

1316 or email campaigns@pituitary.<br />

org.uk and Rosa, our Campaigns,<br />

Volunteers & Events Manager, will be<br />

happy to help. To find out more and see<br />

how you can get involved you can visit<br />

the campaigns section of our website<br />

- just click on the ‘Get Involved’ tab<br />

- www.pituitary.org.uk/get-involved/<br />

awareness/<br />

Some useful resources from our past<br />

campaigns are still available in the<br />

archive which you could use to spread<br />

awareness. We are also looking for<br />

people to distribute awareness posters<br />

in your local area and to your local<br />

hospital and GP surgery ■<br />

Pituitary Life | summer 2017


Local Support Group News<br />

7<br />

This section contains some<br />

brief updates from a few of our<br />

Support Groups around the UK.<br />

For information and to see if one of<br />

our Support Groups meet near you,<br />

please see our website, contact<br />

0117 370 1320, or email helpline@<br />

pituitary.org.uk<br />

Edinburgh Support Group:<br />

A meeting was held by The Foundation<br />

in March to support this currently<br />

dormant group, and to help get the<br />

group members back together following<br />

the sad death of their Area Coordinator,<br />

Sharon Combe last year. Jay Sheppard<br />

ran the meeting and gave an update<br />

presentation about The Foundation’s<br />

activities and information about<br />

becoming a volunteer coordinator. On<br />

17 June, Glasgow coordinator Helen<br />

Grant very kindly offered to run a joint<br />

meeting for both groups. Alison Milne<br />

from The Foundation attended to talk<br />

about ‘Living with pituitary conditions’.<br />

However, without new volunteers to<br />

run the meetings every few months the<br />

group will not be able to keep meeting.<br />

We are still looking for a volunteer (or a<br />

few volunteers) who would want to take<br />

over - running a group can be hugely<br />

rewarding. Please contact Rosa Watkin<br />

if you would like more information -<br />

email rosa@pituitary.org.uk or call<br />

0117 370 1316.<br />

Guildford and Surrey Support<br />

Group:<br />

This friendly group meet in the Cedar<br />

Centre in Royal Surrey County Hospital.<br />

They welcome regular speakers and<br />

Sammy Harbut speaking at the Guildford and Surrey Support Group<br />

patients are more than welcome to<br />

bring a friend or a partner. There is<br />

tea, coffee and biscuits available, and<br />

a fun raffle. Sammy Harbut from<br />

The Foundation visited this group in<br />

March to give a presentation about<br />

our activities and fatigue management.<br />

The next meeting will be held on<br />

Saturday 1 July. If you would like more<br />

information about future meetings<br />

or wish to contact Judith who runs<br />

the group, don’t hesitate to email<br />

helpline@pituitary.org.uk or phone<br />

01932 868650.<br />

The Cushing’s Online<br />

Support Group:<br />

This group is for Cushing’s patients<br />

to share information and give peer<br />

support to each other. It has been<br />

hugely successful and has now reached<br />

over 300 members. Eileen Holt,<br />

a Cushing’s patient, is the group’s<br />

coordinator and you can contact<br />

Eileen at cushing.eileen@gmail.<br />

com to be added to the group’s<br />

communications list and Facebook<br />

page. We have recently welcomed<br />

Pauline Swindells as a volunteer and<br />

she supports Eileen running the group<br />

(particularly the Facebook page). The<br />

group is here to offer peer support and<br />

information so do please get in touch.<br />

York Support Group:<br />

Meetings are a chance to support<br />

each other, and learn more about<br />

pituitary conditions with people<br />

who understand. Patients, families<br />

and friends are all welcome. In the<br />

spring, the group were joined at their<br />

meeting by Dr Bahl, a Neurosurgeon<br />

from Hull. To be added to the group<br />

email loop, to keep up to date with the<br />

groups’ activities, please call or text<br />

Dominika on 07825 769082 or<br />

email dbutler.york@<br />

gmail.com ■<br />

1st UK acromegaly meet up<br />

Saturday 1 July at QE Hospital Birmingham Conference Centre<br />

11:30am to 5:00pm<br />

Tickets £10 includes buffet lunch<br />

More information at bit.ly/ukacromeet2017<br />

Pituitary Life | summer 2017


8<br />

news Professional articles<br />

Building resilience, or improving your<br />

bounce back-ability<br />

By Dr Sue Jackson<br />

Resilience is the process by<br />

which we return to normal<br />

functioning after being exposed<br />

to something stressful or difficult.<br />

It is enshrined in the ideas of what<br />

constitutes good mental health;<br />

being able to handle normal levels of<br />

stress, leading an independent and<br />

full life, being able to “bounce back”<br />

from difficult situations or life events.<br />

In fact, resilience is also known as<br />

“bounce back-ability”. As I’ve already<br />

said, resilience is a process - what it’s<br />

not is a personality trait. Resilience,<br />

or lack thereof, is an issue for many<br />

people with pituitary conditions, so in<br />

this article I want to look at how we<br />

can rebuild it.<br />

Three core attributes<br />

Karl Gregory has suggested that resilience<br />

has three core attributes: power, purpose,<br />

and pleasure. The first attribute, power,<br />

relates to the physical, psychological<br />

and social aspects of resilience. This<br />

might sound a bit abstract to some of<br />

you, so in my more concrete terms it is<br />

about knowing your own strength. It’s<br />

the kind of bone-deep knowledge that<br />

comes from having survived difficult<br />

situations and knowing that whatever<br />

comes in the future, while it might bring<br />

you to your knees and working through<br />

it may not look pretty, you know you can<br />

deal with it. Gregory says it’s having the<br />

identity of a survivor rather than that<br />

of a victim – experiences putting steel<br />

in your soul. Developing this attribute<br />

of power is akin to developing personal<br />

mastery. Power flows from spending<br />

some time understanding your personal<br />

strengths, recognising when and where<br />

they serve you well and when they are<br />

unhelpful. Context matters; for example,<br />

persistance is a great skill, but if you<br />

can’t recognise when you’re wasting your<br />

time, then sometimes it’s going to be your<br />

greatest weakness. Developing personal<br />

mastery takes what I call self-investment,<br />

this could mean working on practising<br />

your problem-solving skills, getting<br />

comfortable with seeking help from<br />

others when needed, and/or learning<br />

how to understand, process and manage<br />

your feelings and cope. The Pituitary<br />

Foundation has a number of different<br />

sources of help for members from the<br />

telephone buddies, to the wellbeing series<br />

of booklets to help promote this aspect<br />

of developing resilience.<br />

Second attribute<br />

The second attribute, purpose, comes<br />

from making meaning of what we<br />

experience. Again, it sounds a bit abstract,<br />

so in my more practical terms, it’s the<br />

idea that everything happens for a reason.<br />

For some people, purpose has a strong<br />

spiritual component, while for others it’s<br />

about fostering acceptance - coming to<br />

the position of understanding that life<br />

will be different than it was before, not<br />

necessarily better or worse, just different.<br />

Core attributes of resilience<br />

(Gregory, 2014)<br />

Power<br />

Pleasure<br />

Purpose comes from talking to others<br />

about our experiences. Such sharing<br />

enables us to see how others makes sense<br />

of what has happened to them and gives<br />

us ideas about how we can make sense<br />

of what has happened to us. We can also<br />

work on developing this attribute through<br />

talking therapy or art therapy, as well as<br />

through helping others (in giving we also<br />

receive by being part of something larger<br />

than ourselves). And if you’re interested,<br />

there are opportunities to volunteer<br />

through The Pituitary Foundation.<br />

Final attribute<br />

The final attribute, pleasure, might seem<br />

a bit random, but actually deeply enjoying<br />

something that enriches, be it a hobby of<br />

some kind or spending time with friends<br />

and family, is good for us. In my article in<br />

the last edition, I talked about the need<br />

for active restoration, and this attribute is<br />

very much about that. It’s about spending<br />

some of your energy on something that<br />

really matters to you and where you get<br />

a sense of enjoyment, and possibly also<br />

growth and development. So if your<br />

Purpose<br />

Pituitary life | summer 2017


Professional articles<br />

9<br />

hobby is dancing, it’s the pleasure that<br />

comes from moving to the music, but<br />

also from learning new steps. I collect<br />

perfume, and pleasure can come from<br />

finding an amazing new scent, or from<br />

learning something about the art of<br />

perfumery that I didn’t know before. You<br />

might have noticed that there’s an element<br />

of personal mastery here, described in<br />

the first attribute of power. And indeed,<br />

Gregory suggests that the three attributes<br />

are linked. Power and purpose giving you<br />

the strength that comes from true selfknowledge<br />

while pleasure balances out<br />

the other two attributes by being the place<br />

where we can attain what psychologists<br />

call a “flow state” where you are unaware<br />

of the passing of time because you are<br />

so deeply immersed in whatever it is you<br />

are doing. It also helps us by enabling us<br />

to practice a form of self-soothing – very<br />

important when we need to “bounce<br />

back” from difficult life experiences.<br />

Bouncing back<br />

When we say we “bounce back” what is<br />

it that we are bouncing back to? I tend<br />

to describe it as your comfort zone, that<br />

place where we feel safe because we<br />

know and understand everything and<br />

where there will be no surprises. Building<br />

resilience involves making sure that our<br />

comfort zone is a good size. Building our<br />

comfort zone requires that we are able<br />

to learn from our experiences, but there<br />

are a number of situations where that<br />

learning is blocked. So, if you’re hungry,<br />

thirsty, tired or not feeling well, if you feel<br />

your personal safety is being threatened,<br />

and/or if the personal safety of someone<br />

you care about is being threatened, you<br />

won’t be in a position to learn from your<br />

experience because the physical stress<br />

that you are experiencing has switched<br />

on your fight/flight/freeze response,<br />

and you can’t do learning when your<br />

threat system is on. Similarly, you will<br />

struggle to learn from your experiences<br />

if you feel isolated from others, ignored,<br />

misunderstood, used or taken for granted.<br />

A lack of social support and good<br />

relationships with others is also a form of<br />

stress that blocks our ability to learn and<br />

leaves us stressed which makes growing<br />

Building resilience<br />

Change<br />

Comfort<br />

zone<br />

our comfort zone and improving our<br />

resilience very difficult. Indeed, having<br />

a poor self-relationship is also unhelpful<br />

in this regard. We need the voice in our<br />

head to be supportive and caring, not<br />

harsh and critical making us feel stressed<br />

and setting off our threat system. The<br />

experience of being diagnosed and treated<br />

for some individuals with a pituitary<br />

condition has been so stressful that they<br />

have developed Post-Traumatic Stress<br />

Disorder (PTSD). In this case, the threat<br />

system is permanently on, effectively<br />

blocking the ability to learn. You might<br />

think that it would be impossible to grow<br />

your comfort zone or improve your<br />

resilience in such a situation, but this<br />

would not be true. It all hinges on how<br />

you go about doing it.<br />

Out of our comfort zone<br />

What we need is to have experiences that<br />

take us just a little way out of our comfort<br />

zone with an easy way back to it again.<br />

In essence we’re looking at experiencing<br />

small differences to our usual routines<br />

and ways of living and breaking down<br />

more challenging new experiences into<br />

small enough chunks that we can deal<br />

with them and not feel overwhelmed.<br />

There are lots of things that could<br />

potentially help us with this. When I say<br />

“small”, I really do mean “small”. So, for<br />

example, trying a new flavour of sandwich<br />

for lunch. Listening to a new style of<br />

music on the radio, or trying a different<br />

kind of scented soap. Yes, that small!<br />

Dealing with change<br />

A larger challenge/change might be<br />

attending your first local support group<br />

meeting, or coming to the annual patient<br />

conference. The first step might be finding<br />

out some information about it from the<br />

website. Then you might want to take<br />

the step of talking to one of the phone<br />

buddies about it, before researching the<br />

place where the meeting/conference<br />

is taking place. Research suggests that<br />

those of us that are good with dealing<br />

with change tend to be more resilient and<br />

have better mental health than those that<br />

don’t. And all these little things add up.<br />

You might think that your comfort zone<br />

is big enough and that you don’t need<br />

to do anything to grow it, but research<br />

tends to suggest that if you stick to the<br />

same routines all the time, what tends to<br />

happen is that your ability to be able to<br />

deal with change deteriorates and this is<br />

associated with a reduction in resilience.<br />

So seeking out those little differences and<br />

giving yourself the opportunity to try<br />

new things, however small, is very good<br />

for us ■<br />

Pituitary life | summer 2017


10 Professional articles<br />

Presentation to final year<br />

Occupational Therapy students at<br />

Liverpool University, February 2017<br />

Sammy Harbut<br />

I<br />

was approached by Dr Bethan<br />

Collins, Senior Lecturer and<br />

Module Leader on the BSci (Hons)<br />

Occupational Therapy Degree<br />

Course, at the end of 2016. She asked<br />

if I would visit the final year students,<br />

who were undertaking their last<br />

module before qualification, to talk<br />

about the diverse nature of my role<br />

at The Pituitary Foundation. The<br />

students are now considering the area<br />

of Occupational Therapy they would<br />

like to pursue as qualified therapists,<br />

and as traditional roles are expanding,<br />

and more opportunities arising, it was<br />

felt it may be beneficial for them to<br />

hear about my role within the charity<br />

sector.<br />

I began the presentation with The<br />

Pituitary Foundation’s objective: ‘Every<br />

person affected by a pituitary condition<br />

has a timely diagnosis and access to the<br />

best treatment, information and support’.<br />

This is an essential starting point for me<br />

as a therapist. I cannot influence diagnosis<br />

or medical treatment/surgery, but<br />

within my role I am helping to develop<br />

services which can provide information<br />

and support to the pituitary patient<br />

community.<br />

My journey as a patient<br />

Initially, my presentation concentrated<br />

on my journey as a patient, as I felt it<br />

was important to explain the impact<br />

of pituitary conditions on the health<br />

and functioning of those diagnosed<br />

with pituitary. As little is known about<br />

pituitary conditions amongst healthcare<br />

professionals generally, this provided<br />

a good opportunity to raise awareness<br />

and highlight the difficulty patients have<br />

returning to a life which has purpose and<br />

meaning, following treatment.<br />

I then explained about the<br />

responsibilities I inherited when<br />

appointed - facilitating and contributing to<br />

Helpline services, providing contact and<br />

information for researchers undertaking<br />

specific pituitary projects, and representing<br />

The Pituitary Foundation at external<br />

training events. I then discussed how I<br />

have been able to introduce and expand<br />

the concept of occupational therapy to<br />

the patient community, and how they are<br />

benefiting from this approach.<br />

Fatigue management<br />

Consequently, I highlighted how I have<br />

been appointed as a Patient and Public<br />

Member to NHS England’s Clinical<br />

reference Group for Specialist Endocrine<br />

Conditions, represent The Foundation on<br />

WAPO (World Association of Pituitary<br />

Organisations), and developed a special<br />

interest in fatigue management. As fatigue<br />

is an issue for all pituitary patients, this<br />

area of my work has been sought after,<br />

is well received, and continues to develop.<br />

Consequently, I have presented on this<br />

subject at our National Conference and<br />

at many Local Support Groups, as well<br />

as developing the first Fatigue management<br />

booklet and presenting a live webinar.<br />

I have ‘occupation’ (or activity) at the<br />

forefront of my mind when engaging with<br />

patients (be it by email, on the Helpline,<br />

or in person) as there is an underlying<br />

assumption in my profession that people<br />

are much healthier and happier when they<br />

can be active in their life roles. This is not<br />

easy for pituitary patients, the majority<br />

of whose lives have been interrupted<br />

by their diagnosis and a deterioration<br />

in their health. But understanding how<br />

Occupational Science concepts influence<br />

peoples’ lives, and applying Occupational<br />

Theory to their life stories enables me<br />

to understand how they can engage in a<br />

therapeutic relationship, however brief<br />

that might be.<br />

Accepting new circumstances<br />

As pituitary conditions often impose<br />

significant restrictions on a person’s ability<br />

to participate fully in life, it is necessary<br />

to work with some patients on accepting<br />

their new circumstances, and exploring<br />

with them how they can adapt to become<br />

active to a level which is acceptable to<br />

them. I spoke to the students about how<br />

Occupational Disruption, Transition and<br />

Deprivation impact on patients’ lives,<br />

and how I structure interventions around<br />

theory - as this guides my communication.<br />

I have this at the forefront of my mind<br />

when establishing the importance of<br />

different activities for different patients,<br />

and offer guidance and support whilst<br />

they explore possibilities and learn to live<br />

Pituitary life | summer 2017


news Professional articles<br />

11<br />

with their ‘new selves’.<br />

I am an occupational therapist in my<br />

heart, in my thinking and in the way I<br />

relate to the patient community and use<br />

my OT skills every day, either directly<br />

or indirectly. Indeed, each patient’s<br />

occupational balance and ability to engage<br />

in meaningful occupation informs my<br />

thinking.<br />

Committed to the best service<br />

I engage with the OT community by<br />

attending conferences, training and away<br />

days and I’m a member of the College<br />

of Occupational Therapists and the<br />

Independent Practitioners South West<br />

Group. Attendance at meetings and events<br />

provide a bridge which keeps me linked to<br />

practice. I also maintain a record of my<br />

Continuous Professional Development<br />

(CPD) which allows me to remain Health<br />

and Care Professions Council (HCPC)<br />

registered. Such registration requires high<br />

standards of practice and maintenance<br />

of skills and knowledge, which I<br />

hope reassures my employer that I am<br />

committed to providing the best service<br />

to our patient community at all times.<br />

The feedback I received following<br />

my visit was positive, and Dr Collins<br />

commented that it had been helpful to the<br />

students’ learning, enabling them to think<br />

about different options for their own<br />

futures, different roles for Occupational<br />

Therapists, and how they could develop<br />

ideas for their final module. They<br />

suggested that final year students next<br />

year would also benefit from this session,<br />

and I would be happy to attend ■<br />

New preparation of hydrocortisone<br />

treatment for children under 6 years<br />

and adult CAH patients<br />

Diurnal is launching a ‘paid<br />

for patient access scheme’ to<br />

allow doctors to prescribe their<br />

products to patients with no other<br />

therapeutic options, prior to marketing<br />

authorisation. The scheme will be for<br />

the expected initial indications for<br />

their medicines where we believe there<br />

is early evidence that could inform a<br />

doctor’s prescribing.<br />

Diurnal tell us that this current scheme<br />

is only for children under 6 years of age<br />

with AI and adults with CAH (congenital<br />

adrenal hyperplasia).<br />

Diurnal Group plc<br />

Diurnal appoints Clinigen to<br />

launch a European Patient<br />

Access programme for<br />

Infacort® and Chronocort®<br />

Excerpts from press release of<br />

16 March 2017<br />

Infrastructure and supply chain now in place<br />

to provide Infacort® and Chronocort® as<br />

unlicensed medicines to patients on a Named<br />

Patient basis.<br />

Diurnal Group plc (AIM: DNL), the<br />

specialty pharmaceutical company<br />

targeting patient needs in chronic<br />

endocrine (hormonal) diseases, announces<br />

a partnership with Clinigen Group plc’s<br />

(AIM: CLIN) IDIS. Managed Access<br />

(“IDIS”) division to launch a Patient<br />

Access programme in Europe for the<br />

Company’s lead products, Infacort® and<br />

Chronocort®, for patients with diseases<br />

of cortisol deficiency.<br />

The Patient Access programme will<br />

enable physicians in Europe to prescribe<br />

Infacort® and Chronocort® as unlicensed<br />

medicines on a Named Patient basis for<br />

patients who have no other treatment<br />

options, ahead of anticipated European<br />

approval and commercial launch of the<br />

products.<br />

Infacort® is a preparation of<br />

hydrocortisone (the synthetic version of<br />

cortisol) specifically designed for use in<br />

children suffering from AI, including the<br />

related disease, CAH.<br />

Chronocort® is a modified release<br />

hydrocortisone preparation that has been<br />

designed to mimic the natural circadian<br />

rhythm of cortisol when given in a twicea-day<br />

“toothbrush” regimen for the<br />

treatment of adult CAH.<br />

AI and CAH are characterised by<br />

deficiency in cortisol, an essential hormone<br />

in regulating metabolism and the response<br />

to stress. AI is identified as a rare disease<br />

in Europe where there are estimated to<br />

be approximately 4,000 sufferers younger<br />

than the age of six. Poor control of the<br />

disease can result in premature puberty<br />

in young children, virilisation in girls and<br />

chronic fatigue leading to a poor quality<br />

of life in adulthood resulting in increased<br />

morbidity and mortality.<br />

CAH is the most common inherited<br />

(genetic) hormone disorder affecting both<br />

men and women. Approximately two<br />

thirds of CAH patients are estimated to<br />

have poor disease control. The condition<br />

is estimated to affect approximately<br />

51,000 patients in Europe. Poor disease<br />

control can lead to increased mortality,<br />

infertility and severe development defects<br />

including ambiguous genitalia, premature<br />

sexual development and short stature.<br />

Sufferers, even if treated, remain at risk<br />

of death through an adrenal crisis.<br />

Diurnal submitted a Paediatric Use<br />

Pituitary Life | summer 2017


12 Professional articles<br />

Marketing Authorisation (PUMA)<br />

application for Infacort® to the European<br />

Medicines Agency (EMA) in late 2016.<br />

Diurnal anticipates that the EMA review<br />

process could take up to one year to<br />

complete.<br />

Chronocort® is currently in Phase<br />

III clinical development with the trial<br />

scheduled to complete in 2018.<br />

If the results of the Phase III trial<br />

are supportive, Diurnal plans to submit<br />

Chronocort® for market approval in<br />

Europe.<br />

Healthcare Professionals can obtain<br />

details about the Infacort® and<br />

Chronocort® Patient Access programmes<br />

by calling 01283 495 010, or emailing<br />

customer.services@clinigengroup.com.<br />

For further information, please visit<br />

www.diurnal.co.uk<br />

Current therapy for CAH uses a combination<br />

of generic steroids (hydrocortisone,<br />

dexamethasone and prednisolone)<br />

and, at best, these adequately treat approximately<br />

one third of CAH patients.<br />

Other therapies being developed are<br />

at an early stage of development and<br />

not expected to receive approval in the<br />

short-term.<br />

About Infacort®<br />

Infacort® represents the first preparation<br />

of hydrocortisone specifically designed<br />

for use in children suffering from AI. It<br />

is a patented, immediate-release, oral,<br />

paediatric formulation of hydrocortisone<br />

that allows for age-appropriate dosing<br />

in children. This therapeutic approach<br />

has the potential to help young patients<br />

less than six year of age suffering from<br />

diseases due to cortisol deficiency<br />

including adrenal insufficiency and<br />

congenital adrenal hyperplasia. AI<br />

requires life-long treatment and Diurnal’s<br />

novel approach to product development<br />

has the potential to significantly improve<br />

these young patients’ lives.<br />

Diurnal has already submitted for<br />

market authorisation to the European<br />

Medicines Agency via the Paediatric Use<br />

Marketing Authorisation (PUMA) route<br />

in late 2016.<br />

About Chronocort®<br />

Chronocort® is a modified release<br />

hydrocortisone preparation that has been<br />

designed to mimic the natural circadian<br />

rhythm of cortisol when given in a twicea-day<br />

“toothbrush” regimen (last thing at<br />

night before sleep and first thing in the<br />

morning on waking). Chronocort has<br />

been granted orphan drug designations in<br />

Europe and the US in the treatment of<br />

CAH and AI. The first planned indication<br />

for Chronocort® is CAH. Chronocort®<br />

has completed three Phase I trials in 2011,<br />

2012 and 2015 (food effects study) and a<br />

Phase II trial in CAH patients in 2014, and<br />

is currently in Phase III trials in Europe ■<br />

Masters research: Understanding the Needs of<br />

Children with Pituitary Conditions<br />

– looking for participants<br />

Jade Walsh, Masters Student, Plymouth University<br />

We’re still looking for people to take part in<br />

this research study. As a reminder, we are<br />

interested in hearing about what it’s like<br />

to have a pituitary condition as a young person, how<br />

decisions are made about your medical care, and any<br />

issues about the transition from paediatric to adult<br />

care.<br />

To take part you need to be aged between 10 and 21 years<br />

and be willing to be interviewed in a private, safe, chat-room<br />

online with Jade. If you decide to take part in the study we<br />

will give you a £10 Amazon voucher.<br />

The research has been approved by the University of<br />

Plymouth and is supported by The Pituitary Foundation. If<br />

you or your child would be interested in taking part, please<br />

feel free to contact Jade for more information at jade.walsh@<br />

students.plymouth.ac.uk ■<br />

Pituitary life | summer 2017


Professional articles<br />

13<br />

Connected, Supported, Informed -<br />

experiences & benefits of membership<br />

of The Pituitary Foundation<br />

By Anneliese Underwood, Alyson Norman & Dr Sue Jackson<br />

Awhile ago we asked members<br />

of The Pituitary Foundation<br />

to talk to one of the students<br />

from the University of Plymouth<br />

(Anneliese Underwood) about their<br />

experiences of being a member of<br />

The Foundation. We were particularly<br />

interested in gaining some insight<br />

into how the various services offered<br />

by The Foundation help individuals<br />

with a pituitary condition to manage<br />

their condition. Ten people (four male<br />

and six female, aged from 37 to 72<br />

years) talked to Anneliese about their<br />

experiences. The interviews were<br />

recorded and then transcribed before<br />

being analysed using a qualitative<br />

method known as inductive thematic<br />

analysis (Braun & Clarke, 2006).<br />

Transcripts were scrutinized to identify<br />

themes associated with having a<br />

pituitary condition and having contact<br />

with The Pituitary Foundation.<br />

Four main themes were found, all of<br />

Table 1: Table of Themes<br />

Theme<br />

which had specific issues associated with<br />

them, which have been labelled as subthemes.<br />

In both the report made to The<br />

Foundation and the summary of results<br />

here, the themes are described in the<br />

order shown in the table. The starting<br />

point in theme 1 is the importance of<br />

the support as it is experienced by these<br />

members of The Pituitary Foundation.<br />

How participants found out about The<br />

Foundation (theme 2) is then considered,<br />

before moving on to exploring experiences<br />

of the local support groups (theme 3).<br />

The report to The Foundation finishes<br />

by reporting on the issues that this group<br />

of people wanted support with (theme<br />

4), but this article focuses on themes 1 to<br />

3, i.e. participants’ experiences of being<br />

members of The Foundation. This is a<br />

very descriptive analysis, and to that end<br />

voices of participants have been used<br />

in the form of anonymised quotes to<br />

illustrate the themes and issues identified<br />

in the data.<br />

Sub-theme<br />

Theme One: The Foundation as<br />

a source of support<br />

Our study participants found The<br />

Foundation to be very beneficial for them<br />

especially in helping them to live with<br />

their pituitary condition. There were two<br />

aspects to this: a) support with various<br />

aspects of condition management, and b)<br />

reducing isolation, i.e. reducing the sense<br />

of being the only person struggling to live<br />

with the condition.<br />

Sub-theme a) Condition management<br />

All participants found the help provided<br />

by The Foundation to be invaluable,<br />

particularly in the provision of<br />

information, support and professionals<br />

who understand the pituitary conditions<br />

patients have.<br />

“I don’t think I would be alive without the<br />

Pituitary Foundation”<br />

“I certainly came away feeling very impressed<br />

with the organisation… the leaflets about my<br />

condition and the endocrine support nurse and<br />

the support groups, those are probably the<br />

three things that have helped me.”<br />

1. The Foundation as a source of<br />

support<br />

2. Access to The Foundation Publicity<br />

a) Condition management<br />

b) Reducing isolation<br />

3. Attendance at Support Groups Geographical location<br />

4. Life changing diagnosis a) Mental health impact of diagnosis<br />

b) Difficulties with condition<br />

management<br />

All the participants described how The<br />

Foundation has been a great source of<br />

information about their diagnosis and<br />

condition, as well as lifestyle management.<br />

“…the Pituitary Foundation have really<br />

opened my eyes on how to look after myself...<br />

I was wandering around without extra<br />

pills and I was going without a cortisone<br />

injection…so if I had of collapsed that<br />

would have been it.”<br />

Pituitary Life | summer 2017


14 Professional articles<br />

“Oh it helps me understand the<br />

condition, understand what to do<br />

about it, understand the effects of the<br />

medication…it helps me to find the<br />

specialist medics that I should see…It<br />

helps me feel not alone and having the<br />

nurse at the end of the support it just so<br />

reassuring…”<br />

Sub-theme b) Reducing isolation<br />

Participants felt that support groups not<br />

only helped them gain reassurance, they<br />

created a space which helped them achieve<br />

a shared understanding as individuals<br />

disclosed their mutual experiences of<br />

living with a pituitary condition.<br />

“You’re talking to somebody who knows<br />

what you mean,… You do not have to start<br />

from scratch… can pick up handy tips…”<br />

“So I think…giving me the confidence that<br />

I could actually get involved…there are<br />

other benefits as I have actually quite a few<br />

friends through it as well…”<br />

Theme two: Access to The<br />

Foundation<br />

Many participants described how they<br />

initially found finding information about<br />

The Foundation quite challenging.<br />

“The Pituitary Foundation I didn’t know<br />

about initially, the endocrine team didn’t tell<br />

me about it …I think that they have got<br />

their act together and I am pretty sure that<br />

the Pituitary Foundation have got their act<br />

together and its far more professional.”<br />

So the general experience was one<br />

of more accidental discovery of the<br />

existence of The Foundation, and an<br />

important element of this was associated<br />

with publicity.<br />

Sub-theme: Publicity<br />

Individuals need to be given information<br />

regarding The Foundation as soon as<br />

possible after their diagnosis, but the<br />

general experiences related by our study<br />

participants tend to suggest that this is not<br />

happening. It seems so straightforward;<br />

medical professionals just need to<br />

signpost newly diagnosed individuals to<br />

The Foundation, and it definitely happens<br />

in some areas.<br />

“People now get referred to a support group<br />

but they’re also given the information about<br />

the Pituitary Foundation…the endocrine<br />

nurse and the consultants can hand out a<br />

piece of paper which says that this is the<br />

Pituitary Foundation, this is the local<br />

support group.”<br />

The participants were aware that The<br />

Foundation has been working hard to<br />

ensure a better referral pathway from<br />

hospitals, but there was recognition that<br />

it is an uphill struggle to get medical<br />

professionals and medical services on<br />

board.<br />

“I know that they have tried to contact<br />

more of the local hospitals so it would be<br />

about spreading the word by having different<br />

information points in hospital”<br />

“The key issues I think is persuading<br />

endocrinology and neurology departments to<br />

actually publicise their existence…I think<br />

there is an education problem there with the<br />

people that have direct interface with those<br />

with pituitary conditions, seemingly not<br />

being terribly aware or not being terribly<br />

interested…”<br />

Theme three: Attendance at<br />

support groups<br />

Local groups are one way in which The<br />

Foundation provides support to patients<br />

with pituitary conditions. It was clear<br />

from the conversations with our study<br />

participants that there are key features<br />

that make local groups a success, such as<br />

having a regular membership attending<br />

the sessions. Leadership was similarly key<br />

for success both in terms of attracting<br />

members to the group, but also in terms<br />

of managing group cohesion part of which<br />

was sharing similar values and interests.<br />

“I think the only negative thing is getting<br />

folk to come to meetings urm but that’s not<br />

so much a problem now with a group leader”<br />

Sub-theme: Geographical location<br />

It was clear that the local support groups<br />

are highly valued, and travelling for some<br />

participants is a sacrifice worth making.<br />

“I have travelled from Cheltenham to<br />

Bristol to the meeting so that will give you<br />

some idea of how important it is…”<br />

However, if you aren’t able to attend a<br />

local support group, members can use<br />

other aspects of support provided by<br />

The Foundation, such as the information<br />

provided on the website. This highlights<br />

how the online resources of the<br />

Foundation also help to keep members<br />

connected.<br />

“I do get copies of their newsletter emailed<br />

and it does help to know that some of the<br />

problems that I have…that other people<br />

with similar conditions are feeling the same<br />

way. So just knowing that is helpful…”<br />

In conclusion, the participants who<br />

took part in this study clearly value The<br />

Pituitary Foundation as a vital source of<br />

support and information when trying to<br />

make sense of their pituitary condition.<br />

That the organisation provides longterm<br />

support, not just immediately<br />

after diagnosis, but through the patient<br />

journey, matters to patients. However,<br />

it is clear that there are difficulties with<br />

patients learning about The Foundation<br />

and the services it offers. This may, in<br />

part, explain why so many people with<br />

pituitary conditions throughout the UK<br />

are still not members of The Foundation.<br />

It is clear that greater publicity is required,<br />

along with enhanced referral pathways<br />

with health professionals working in the<br />

field ■<br />

References<br />

Braun, V., & Clarke, V. (2006). Using<br />

thematic analysis in psychology.<br />

Qualitative Research in Psychology, 3, 77-<br />

101.<br />

Pituitary Life | summer 2017


Patients’ stories<br />

15<br />

Taylor’s story<br />

Hello! My name is Taylor. I am in<br />

year 4 at Dearham School and<br />

I would like to raise awareness<br />

of something that many of you might<br />

not have heard of. It is a rare condition<br />

affecting 1 in 25,000 people, and I am<br />

one of them……I have a condition<br />

called diabetes insipidus (DI for<br />

short) and I would like to tell you<br />

about it…..”<br />

When anyone hears the word ‘diabetes’<br />

they assume that it is to do with my blood<br />

sugar. It isn’t! They should not be confused.<br />

I have a tumour on my pituitary gland,<br />

inside my brain. This is why I have DI. I<br />

don’t secrete a hormone called ADH (antidiuretic<br />

hormone) which tells the kidneys<br />

how much water to keep in your body. My<br />

body tries to get rid of all of the water,<br />

which causes me to drink excessively and<br />

I need to wee all the time. This makes me<br />

very ill, and before I was diagnosed with<br />

DI I was really poorly. I was up all night<br />

drinking and going to the toilet.<br />

I take a drug called vasopressin, three<br />

times a day, which helps to control my<br />

thirst and urine output. If I miss a tablet<br />

or take it at the wrong time, all of my<br />

symptoms start again. I have to have<br />

MRI scans on my brain every three to six<br />

months to check that my tumour hasn’t<br />

grown. I have lots of blood tests too,<br />

I didn’t like them at first but now I am<br />

really brave! There are five special doctors<br />

called consultants that look after me, and<br />

carefully study the pictures of my brain<br />

after each scan.<br />

I get side effects from my medication<br />

sometimes - I can feel emotional, weak<br />

and tired. But I don’t let it stop me doing<br />

all the things I enjoy like football and<br />

golf. I hope I can create awareness of my<br />

condition and also raise some money for<br />

The Pituitary Foundation.” Taylor<br />

Jay Shepherd, Fundraising Manager<br />

writes: Taylor has already made it clear<br />

that he is very keen to help us raise funds<br />

for pituitary patients. His family have set<br />

up a fundraising group in Cumbria, led by<br />

mum Louise and we are really excited to<br />

have them on board with us. Their recent<br />

‘Go Orange’ event at Taylor’s school<br />

raised £535! On top of this, Taylor and<br />

his sister Edan are running the Mini Great<br />

North run, raising £235 already, whilst his<br />

aunt Lindsey and her partner Adam will<br />

be taking on the Great North Run for us.<br />

We wish you lots of luck Taylor and thank<br />

you so much for your enthusiasm! ■<br />

Pituitary Life | summer 2017


16 patients Professional Patients’ stories articles<br />

Adrienne’s story<br />

feel that my symptoms were trivial, that<br />

headaches are a common and, not usually,<br />

serious symptom.<br />

Then, I started to occasionally<br />

experience dizzy spells when I was out<br />

walking. They were so fleeting, lasting but<br />

a second or two, I could not be sure that<br />

I had merely imagined them, and thought<br />

myself guilty of incipient hypochondria.<br />

Although I did not mention this to<br />

anyone, not even my husband. My mental<br />

musings ranged from nothing wrong with<br />

me, just hypochondria to a brain tumour -<br />

well, I was almost right!<br />

One day, I was enjoying a day out in<br />

Bath when I suddenly experienced a dizzy<br />

spell walking down some steps and had to<br />

grab onto my husband to prevent myself<br />

from falling. At this point, I knew the<br />

dizziness was real and not imagined and,<br />

when I returned to my GP, she referred<br />

me to see a neurologist.<br />

The onset was slow and insidious.<br />

So imperceptibly did my<br />

symptoms steal up on me that I<br />

did not realise I was becoming ill. In<br />

the run-up to my illness, I do recall<br />

feeling that I had lost my zest for<br />

life, that all enthusiasm and interest<br />

had deserted me, energy was at low<br />

ebb, and that I, and life, had become<br />

a monotonous monochrome. My<br />

bubbles had gone flat. But all this,<br />

I just put down to getting older and<br />

being post-menopausal. I am now 55<br />

years old, 54 when I had a pituitary<br />

apoplexy.<br />

I had been working full-time as a<br />

dentist and then dropped to part-time,<br />

but was still finding work a struggle.<br />

Following my days at work, I needed a few<br />

days of rest to recover. I was also finding<br />

work stressful and, although I had thirty<br />

years experience, and had always taken<br />

it in my stride, silly, unimportant things<br />

troubled me and were blown out of all<br />

proportion. This, coupled with a change<br />

in management at my surgery, made me<br />

decide it was time to hang up my drill and<br />

retire early. Now of course, I realise that<br />

my fatigue and inability to cope with stress<br />

were part of the onset of symptoms as<br />

my poor pituitary was gradually being<br />

overwhelmed by the tumour.<br />

My first headaches<br />

Whilst I was still working, I started to<br />

experience my first headaches which were<br />

not alleviated by analgesics, but strangely<br />

by caffeine. Only a cup of fresh coffee<br />

took the pain away completely, which was<br />

all very well if the headaches occurred<br />

during the day, but a bit of a problem<br />

if they occurred at night, which they<br />

invariably did! I put the headaches down<br />

to stress and eye strain and when, after<br />

giving up work, the headaches did not go<br />

but became worse and more persistent,<br />

I visited my GP who told me I had a<br />

caffeine addiction and advised me to go<br />

cold turkey. This I did, and for a week or<br />

two, coincidentally, the headaches stopped<br />

and when they started up again, I was not<br />

unduly concerned. My GP had made me<br />

Carted off to hospital<br />

It was summer, and my appointment<br />

was not until November, so I tried to get<br />

on with life and squish the impending<br />

appointment into the corners of my<br />

consciousness. But, a holiday in Italy, I<br />

found stressful; a wedding I attended left<br />

me exhausted; even an eightieth birthday<br />

had me leaving before 10pm, whilst the<br />

hyperactive octogenarian danced on well<br />

into the night! Then in late August, my<br />

husband had a minor operation, and on<br />

the following day, when he should have<br />

been convalescing in bed, enjoying hand<br />

and foot waiting service, he instead found<br />

himself running after me as the first<br />

symptoms of my pituitary apoplexy took<br />

off. The headache, like no other headache,<br />

the sensitivity to light, the vomiting, the<br />

fever and finally the double vision got me<br />

carted off to Dorset County Hospital.<br />

Poor husband, barely 48 hours after<br />

having his surgery he was with me until<br />

4:00 am in the morning in A&E!<br />

Although I spent three days in DCH, I<br />

remember very little of my time there. I<br />

was very drowsy and, by that point, could<br />

Pituitary life | summer 2017


Professional news Patients’ stories articles<br />

17<br />

not open my eyes, especially my right eye,<br />

due to a condition called third nerve palsy.<br />

Only voices and questions impinged on<br />

my consciousness. A voice, upbeat and<br />

reassuring (later, I discovered the voice<br />

to have been that of my endocrinologist)<br />

told me that I had a tumour in my<br />

pituitary gland, that they were mostly<br />

benign, and that I would be transferred<br />

to Southampton General Hospital, which<br />

specialised in the particular surgery that<br />

I required. I was mightily relieved that I<br />

neither had a brain tumour nor incipient<br />

hypochondria.<br />

Surgery<br />

On Friday evening, I was transferred<br />

to SGH and, on the Saturday morning<br />

of the August Bank Holiday 2015 (who<br />

says doctors don’t work at weekends!),<br />

had a non-functioning pituitary adenoma<br />

removed by endoscopic trans-sphenoidal<br />

surgery. The day after surgery, I seemed<br />

to be making a good recovery and<br />

enjoyed a visit from my mother and<br />

husband, but by the next day, low levels<br />

of blood sodium, followed by low levels<br />

of potassium made me extremely ill,<br />

and delayed my recovery. I was moved<br />

off the ward to an observation area and<br />

rigged up to a cardiac monitor. Days of<br />

feeling dreadful and nauseous followed.<br />

My husband stayed in Southampton, so<br />

that he wouldn’t have to make the 140-<br />

mile round trip every day to see me.<br />

Eventually, by tweaking my meds and<br />

restricting my fluid intake, my electrolyte<br />

balance was restored, and so was I. I was<br />

overjoyed go home where, for a short<br />

while, I seemed to be blessed by two of<br />

everything, my double vision not having<br />

quite gone. In fact, two husbands seemed<br />

to be doubly efficient in those early post<br />

discharge days!<br />

Exceptional kindness<br />

The treatment I experienced from<br />

my admission to DCH and, onwards<br />

on to SGH, was exceptional. My<br />

endocrinologist, my surgeon and his team<br />

were all amazing, the nurses, who worked<br />

so hard, all so caring and cheerful, even<br />

the dinner lady on my ward showed me<br />

exceptional kindness. I am grateful to<br />

them all and to modern medicine, without<br />

which, I surely would not be here.<br />

Difficulty in early diagnosis<br />

The problem with this condition is the<br />

difficulty in early diagnosis. I had a medical<br />

background, admittedly in an allied field,<br />

but I did not recognise that I was becoming<br />

ill. I knew the location of the pituitary, I<br />

had distant recollections of its function<br />

from studying it in physiology, but I did<br />

not know about pituitary tumours, nor<br />

how insidiously they sidle up, only to<br />

overwhelm and reveal themselves in an<br />

emergency situation.<br />

Regular MRI scans<br />

I am now a year on from being<br />

discharged. I go to all the follow-up<br />

appointments, I have regular MRI scans,<br />

I take hydrocortisone, thyroxine and<br />

ranitidine and generally, I am well, but I<br />

am not the person I was ten or so years<br />

ago before having the tumour - although<br />

some technicolour is beginning to seep<br />

back into my life. People who know I<br />

have been ill, all without fail, say to me,<br />

“but you’re better now”. I am better, but<br />

I am now a pit pat, I have a condition that<br />

needs to be managed and monitored, I<br />

am life dependent on medicines, I have<br />

fluctuating and unpredictable energy<br />

levels, all of which I accept, I have to, it<br />

is part of me and, luckily for me, life goes<br />

on. But of course, I say none of this,<br />

merely, “Yes, I’m better now” ■<br />

Malcolm’s story<br />

Ihave been receiving your magazine<br />

and have been a member for some<br />

years. You have brought details of<br />

many individuals to my notice but<br />

none of them seem to have had an<br />

overall experience along the lines I<br />

have. Overall, I seem to have benefited<br />

both physically and mentally despite<br />

undergoing the removal of the<br />

pituitary gland, followed some years<br />

later with radiation treatment.<br />

I have summarised both what happened<br />

to me and my physical condition and hope<br />

it offers some consolation to others who<br />

go through a similar situation.<br />

Born 1935, now aged 81 years. I was<br />

operated on in 1982, followed up with<br />

radiation treatment in 1993. Height 5’<br />

11”, weight 13st 3 lb (BMI 25 approx.),<br />

Blood pressure 126/68, Heart 54 BPM.<br />

My current drug regime:<br />

Hydrocortisone 25mg daily. Levothyroxine<br />

100mcg daily. Sustanon 250mg 4-weekly.<br />

At the age of 65, I joined a gym where<br />

my tests for lung function, flexibility, grip<br />

strength and lean weight were significantly<br />

above the predicted scores.<br />

Is the condition heritary?<br />

So far as I am concerned, I am very grateful<br />

to specialists and the drugs I take over the<br />

years. My initial concern upon being told<br />

that I had a tumour on my pituitary was<br />

“Is the condition hereditary?” We had<br />

four children at that time and I was very<br />

concerned regarding this aspect. Both<br />

before and after the operation I played a<br />

lot of tennis to a very good club standard<br />

and this continued into my early fifties.<br />

Mental wellbeing<br />

We worship at our local C of E Church<br />

and have been committed church<br />

members most of our lives. I am certain<br />

that this has played a substantial part in<br />

maintaining my mental wellbeing ■<br />

Pituitary Life | summer 2017


18 Professional Patients’ stories articles<br />

Russell’s story<br />

to go to hospital on Sunday. His reply is<br />

legend, for all the wrong reasons! “So, will<br />

you be coming in tomorrow or not?”<br />

In I go to hospital on the Sunday, to<br />

be told I’m probably going to have an<br />

operation. On the Monday a junior doctor,<br />

comes to tell me the pros and cons, like<br />

this (verbatim) “Mr Hawley, there are some<br />

things I have to tell you about the operation.<br />

There is no guarantee of success. You<br />

could be blind, paralysed or dead. Will you<br />

sign this consent form?”<br />

Above: Russell before & after<br />

So, there I am aged 24 working<br />

as a retail manager, two years<br />

married – you could say life was<br />

perfect. Now imagine the scene, we are<br />

sat at home watching the 1990 World<br />

Cup, and I’m impersonating a confused<br />

chicken! Head bobbing all over the<br />

place. My other half, intrigued, asks<br />

“What the hell is the matter with<br />

you?” I replied “Trying to see the bloody<br />

football!”<br />

I could see the players, pretending to be<br />

injured, falling over at the slightest touch,<br />

but not the ball itself.<br />

So, off to the opticians, but I’m<br />

expecting a visit at 11am-‘ish to discuss life<br />

insurance (oh the irony!) and expecting a<br />

call as well. Three hours later, the optician,<br />

Mr Lodge, is shaking his head, rubbing<br />

his chin and then announces in a broad<br />

Yorkshire accent “Your bloody right eye’s<br />

buggered, it’s not working!” (verbatim).<br />

He phones my doctor, who is just<br />

down the road, and 20 minutes later I’m<br />

sat in his office, a teeny bit panicky. A few<br />

tests later, he phones the hospital. Now I<br />

have to point out, that I had been having<br />

health issues and had been diagnosed<br />

with hypopituitarism and was waiting<br />

for my appointment with my endocrine<br />

consultant at the hospital the following<br />

week. So, my doctor, Dr Piggott, has a<br />

chat with my consultant and, by now, it’s<br />

fair to say that I’m climbing the walls with<br />

panic and tells me I’ll be in hospital on<br />

Sunday. “So what happens after Sunday?”<br />

I ask timidly “I don’t really know” I’m told<br />

Later that day, I phone my manager<br />

at work, as he’s expecting me at the<br />

bookshop in the morning. So, I phone<br />

him and explain what’s gone on and that<br />

my life is now on hold - oh and I’ve got<br />

Getting a grip on my condition<br />

Two days later I have the operation and<br />

learn that they found a tumour, a malignant<br />

one, which they had to take out of my<br />

pituitary gland, but that they removed it all,<br />

which they might not have done if it was<br />

benign. So, a plus there then!<br />

I also found out that the tumour,<br />

which was in the middle of my head, is<br />

more commonly found in the testicles. A<br />

fact that my mother reacted to by saying<br />

“Well I’ve always known you were a “xxxx<br />

head!” Thanks mum ... I think!!<br />

I’m now 50 and thanks to The Pituitary<br />

Foundation, I am just getting a real grip on<br />

my condition. For years, I think I treated<br />

it like a mistress! Only there for some of<br />

the time, normality the rest! Employment,<br />

now I look back, has always been an<br />

issue as I just wanted to be treated like a<br />

‘normal’ person, but I know now that I am<br />

not! I have a complex medical condition<br />

that needs almost constant care – tablets,<br />

injections, hospital visits, mood swings and<br />

memory issues to name but a few.<br />

Here’s my confession – I have<br />

panhypopituitarism and it doesn’t control<br />

me anymore! (I hope!!) ■<br />

Sammy’s story<br />

Sammy is our Patient and Family Services Coordinator<br />

Hello everyone, welcome to<br />

my patient story. We know<br />

that this section of our<br />

magazine is popular with our patient<br />

community, but both Pat McBride<br />

and I realised that we have not shared<br />

our own personal pituitary journeys.<br />

Consequently I have included mine<br />

in this edition, and Pat will share her<br />

story with you later.<br />

As Pat and I work primarily to support<br />

our pituitary community, we hope that<br />

by reading our own personal stories you<br />

will appreciate that we have many things<br />

in common with you all, and can relate<br />

Pituitary Life | summer 2017


Patients’ stories<br />

19<br />

to the frustrations and difficulties you<br />

have. If we have ever commented that we<br />

understand and can ‘relate to what you are<br />

saying’, it is because we really do, as we<br />

have experiences similar to the ones we<br />

hear from patients. In addition, as patients<br />

we have to live with - and manage - our<br />

pituitary conditions every day.<br />

Keeping a diary<br />

Immediately following my diagnosis<br />

of pituitary driven Cushing’s disease<br />

(caused by a macroadenoma on the left<br />

hand side of my pituitary gland) I began<br />

to keep a diary to document my time in<br />

hospital, how I was feeling physically and<br />

emotionally etc. Although I didn’t realise<br />

at the time, it became an important tool<br />

for me to express my inner most fears,<br />

but also something which tracked my<br />

recovery over the following years. It<br />

was also useful for communicating my<br />

thoughts and feelings, giving family and<br />

friends an insight into my illness, and<br />

some clue as to how I was feeling if they<br />

found it difficult to discuss. I will share<br />

some diary excerpts here, and hope they<br />

will reassure you that I truly understand<br />

the trauma, uncertainty and frustrations<br />

which can accompany pituitary diseaseand<br />

that I am just like you!<br />

Countless visits to the GP<br />

I should start at the beginning of my<br />

journey however. The first time I noticed<br />

something ‘unusual’ was in 2007 when<br />

I was pushing my grandfather in his<br />

wheelchair, accidentally knocking my<br />

left foot on the foot plate. The pain<br />

was intense, and the next day my entire<br />

foot was bruised and swollen. My sister<br />

was concerned, insisting I visit my GP.<br />

That first visit to the GP was followed<br />

by countless others over the next three<br />

years, and referral to many specialist<br />

departments in two different hospitals,<br />

but each time I was discharged as<br />

having ‘no problem’. I had heart, lung<br />

and respiration checks, kidney and liver<br />

function tests, and was tested for diabetes<br />

twice. I also became a regular visitor for<br />

blood tests- my record was giving 10 vials<br />

of blood in one sitting- which was then<br />

taken by motorbike carrier to a specialist<br />

above: a few photos of me from this time<br />

centre in Oxford for analysis.<br />

Unfortunately, whilst waiting for<br />

various tests, my health began to<br />

deteriorate. I gained excessive amounts of<br />

weight around my tummy, and neck, was<br />

never without severe bruising to my lower<br />

limbs, and developed extreme oedema.<br />

I also experienced 5 miscarriages, until<br />

my periods stopped altogether, but when<br />

I visited a female GP about this, she<br />

didn’t take my concerns seriously, but<br />

commented on my weight gain.<br />

Like most Cushing’s patients, my back,<br />

arms and legs ached, and I lost almost all<br />

of my physical strength so that walking my<br />

young daughter to her school ten minutes<br />

away became excruciating and exhausting.<br />

I could not get up from a chair, the toilet,<br />

or out of the bath, and my skin became so<br />

thin that the slightest knock would result in<br />

horrific injuries which took months to heal.<br />

On two occasions I had to attend A&E,<br />

but they found to their dismay that the skin<br />

would just tear when they tried to stitch it.<br />

Pituitary life | summer 2017


20 Professional Patients’ stories articles<br />

Excessive thirst<br />

My physical appearance changed<br />

so dramatically that when I look at<br />

photographs taken during that time, I<br />

hardly recognise myself. I had a swollen,<br />

red face with excessive amounts of<br />

hair and a classic ‘buffalo hump’ which<br />

extended down to my chest. I was also<br />

experiencing insomnia, mood swings and<br />

a thirst I could not quench, drinking 3<br />

litres of water a day. My left eye was also<br />

frequently bloodshot with no peripheral<br />

vision.<br />

Timely intervention<br />

It was clear that I was unwell, but it took<br />

intervention from my manager to get the<br />

diagnosis I had been seeking for so long,<br />

and to whom I probably owe my life.<br />

Putting my symptoms in a search engine,<br />

she found a link to Cushing’s which she<br />

forwarded to me. I was amazed as I<br />

read the long list of symptoms, ticking<br />

all of them except three. Fortunately a<br />

different GP looking at this information<br />

in June 2010 immediately recognised it<br />

was Cushing’s, and I will remember his<br />

response always - ‘’Well, it’s not what I<br />

want for you Sam, but I think we’ve<br />

found it’’.<br />

Invasive procedures<br />

After three years, endless medical<br />

appointments, the loss of five babies and<br />

almost all my physical strength, I had<br />

an answer - which was both a relief and<br />

terrifying. I immediately spent a week in<br />

hospital having the first of many tests<br />

and invasive procedures. It was confirmed<br />

that I had Cushing’s which was pituitary<br />

driven, and would be treated surgically.<br />

Having been used to waiting for months<br />

for hospital appointments, I asked my<br />

Endocrinologist for a time scale for<br />

surgery, to which he replied ‘you’ll be<br />

dead by Christmas - you’re producing<br />

enough Cortisol for yourself and another<br />

10 people every day’. Talk about breaking<br />

it to me gently!<br />

I had to wait for surgery due to the<br />

high levels however, and was prescribed<br />

Metyrapone to reduce this (which<br />

brought its own challenges). I eventually<br />

had trans-phenoidal surgery in at<br />

Southampton hospital on 12th October<br />

of that year. That day changed my life<br />

forever, and the road to recovery was<br />

long and arduous at times. I experienced<br />

my first major adrenal crisis the day<br />

after my operation, and have had several<br />

others since. The intervening years have<br />

been a learning process for me in terms<br />

of managing my condition, drug regime<br />

, mood changes and fatigue levels. Yet<br />

I have also developed an inner strength<br />

I didn’t know existed, and a lust for life<br />

which is the envy of many.<br />

Journaling<br />

My journal kept me sane in all the madness<br />

that eventually led to diagnosis and<br />

treatment, recording amusing situations<br />

which made me laugh, despite the fears.<br />

Working as a Probation Officer at the<br />

time, I was involved in a serious case<br />

requiring monthly prison visits to two<br />

young men awaiting trial. I had cause to<br />

visit during a 24 hour urine collection test,<br />

and inwardly smiled at leaving my sample<br />

bottle in the locker when I went to visit<br />

the prisoners (the usual contents are keys,<br />

mobile ‘phones and wallets.).These bottles<br />

also accompanied me to the supermarket,<br />

school, and other equally inappropriate<br />

places over time - in fact, I did so many<br />

24 hr urine collection tests that my friends<br />

affectionately referred to me as ‘have wee<br />

will travel’ for a long time after that!<br />

MRI scan<br />

During my first MRI scan the song played<br />

was Frank Sinatra’s rendition of ‘You’ve got<br />

me under your skin’ (!) and the night before<br />

admittance for surgery, my husband wanted<br />

to help me relax as much as possible by<br />

watching a film. His choice? ‘The Man with<br />

Two Brains’ (bless him). He was amazing<br />

though, and accompanied me to nearly<br />

every appointment and test- including the<br />

first follow up appointment after surgery.<br />

Having to undergo the unpleasant and<br />

painful procedure to ensure appropriate<br />

healing was occurring, I was slightly<br />

bemused by the nurse asking my 6’4’’ exprison<br />

officer husband if he was ok when<br />

he fainted - something we still laugh about.<br />

I tried to maintain a sense of humour<br />

and determination throughout this<br />

incredible journey, but which was not<br />

always easy. My diary contains entries<br />

which highlight my desperation, but also<br />

ones which are incredibly positive:<br />

“I feel so totally vulnerable and alone,<br />

because it is happening only to me’’;<br />

“The seriousness of my situation hit home<br />

today when I was looking at my brain scan<br />

images and could see the tumour. Physically<br />

I feel absolutely knackered today, and<br />

mentally battered’’;<br />

“Have cried for all the babies I have lost<br />

because of Cushing’s today’’;<br />

“I am happy that I am still alive, and<br />

thankful for the love I have received this<br />

week’’;<br />

“I have thought about my body in a different<br />

way- focussing on how strong it is to have got<br />

me through the operation - rather than what<br />

it still can’t do’’;<br />

“I am grateful to the illness for reminding<br />

me how special and precious my life is and<br />

can be;<br />

“Friends comment how scared I must be,<br />

and how brave I am. It never feels like this<br />

for me however. I feel lots of other things<br />

- disappointed, upset, sad, frustratedbut<br />

never scared. Life is not without its<br />

difficulties, but worth it all the same’’<br />

My reason for getting up in the morning<br />

now is my desire to make a difference<br />

to at least one patient’s day, providing<br />

kindness, sympathy and understanding.<br />

I also want to provide hope to our<br />

patients, for my diary documents the<br />

progress I made, the self-knowledge I<br />

have accumulated, and why I am truly<br />

grateful for the life I now have. I hope<br />

that with time and encouragement from<br />

me, other patients will feel better about<br />

their circumstances, and have some hope<br />

for their futures too. ■<br />

Pituitary Life | summer 2017


news Raising awareness<br />

21<br />

Snowdon<br />

On Sunday 19 March our first<br />

ever Snowdon Trek was held,<br />

13 adventurous supporters<br />

took part. There were patients, friends<br />

and family members, and no matter<br />

what the motivation for joining us<br />

was, each individual showed grit and<br />

determination to raise vital funds for<br />

the charity.<br />

On the day, the conditions were<br />

absolutely atrocious (see inset photo at<br />

right). There were gale force winds, heavy<br />

rain and freezing cold temperatures to<br />

contend with, but the walkers braved these<br />

extreme conditions nonetheless and made<br />

it to the summit where we were greeted by<br />

snow, ice and even stronger, gustier winds.<br />

This trek was a challenge to say the least<br />

and we would like to commend everyone<br />

who completed it. You all showed grit<br />

and determination of the highest order<br />

and should be extremely proud of your<br />

accomplishment.<br />

In total, our dedicated walkers raised<br />

over<br />

£3,500<br />

between<br />

them which is<br />

a fantastic achievement and we cannot<br />

thank you enough.<br />

We will once again be organising this<br />

trek in 2018, although next year it will<br />

take place during June when the weather<br />

should be more favourable. If you would<br />

like to register your interest then please<br />

email jay@pituitary.org.uk ■<br />

Ben Nevis<br />

On Sunday 11 June we welcomed 20 walkers of all ages and ability,<br />

from all over the UK, who joined in climbing Ben Nevis, the<br />

highest mountain in the United Kingdom. A great time was had<br />

by all. The view from the summit truly was a sight to behold and we<br />

thank everyone who bravely took on this challenge with us.<br />

We have to give a special thanks to Mike Griffin and Ian Brown, volunteers<br />

who were helping on the day. Mike helped with registration, whilst Ian<br />

helped marshal the group alongside our Fundraising Manager, Jay Sheppard.<br />

Sponsorship is still being collected by all of the party but early indications are<br />

that income will be in the region of £6,000, which is phenomenal ■<br />

Good luck &<br />

congratulations!<br />

On 24 June 15 of our supporters<br />

will be abseiling the largest<br />

structure in the UK, the<br />

ArcelorMittal Orbit in the Queen<br />

Elizabeth Olympic Park in the heart<br />

of London. We want to wish each and<br />

every abseiler the very best of luck<br />

as well as thanking them for their<br />

incredible efforts. At the time of going<br />

to print the group had raised over<br />

£5,000 between them! ■<br />

Pituitary Life | summer 2017


22 Professional Raising awareness articles<br />

Legacy strategy<br />

Total 5 year income breakdown<br />

We have been working hard over the past two years<br />

to develop our legacy strategy so that we are more<br />

informed as to who has pledged to leave a gift<br />

to The Foundation in their will. We appreciate that this is<br />

a sensitive subject but we cannot emphasise enough the<br />

importance that gifts in wills play in the development of<br />

our organisation. We are sure that all members will agree<br />

that the organisation has continued to improve year on<br />

year and as a result we now support more patients than<br />

ever before. We have introduced new services such as the<br />

text support service, webinars and many more. Income<br />

received from gifts in wills cannot be underestimated.<br />

The pie chart shows how our total income of £2.2 million<br />

(2011- 2016) has been achieved. Income received from gifts in<br />

wills has been the number one source of income - accounting<br />

for 25% of income during the past five years.<br />

We have invested in our legacy strategy and as a result,<br />

offered free wills to members, an offer that is worth £100. It<br />

has been a pleasure to work alongside Compass Will Writers.<br />

Director, Alyson Dyer, is a pituitary patient and member of The<br />

Foundation. The results from the scheme have been tremendous<br />

with over £100,000 pledged as gifts in wills. We cannot stress<br />

9%<br />

15%<br />

Legacy<br />

Events<br />

Donations<br />

Pharmaceuticals<br />

8%<br />

16%<br />

2% 2%<br />

Membership<br />

Misc<br />

25%<br />

23%<br />

Corporate<br />

Trusts<br />

enough that a legacy does not have to be a huge amount but it will<br />

help future generations of pituitary patients.<br />

If you would like to take us up on this offer please call Alyson<br />

on 01792 893200 or email alyson.dyer@compass-wills.co.uk ■<br />

2017/2018 Events<br />

London Landmarks Half Marathon<br />

March 25 2018<br />

Registration fee £35<br />

Minimum sponsorship: £350<br />

We receive many enquiries regarding the<br />

London Marathon, but sadly we only have<br />

one space every five years. However, we<br />

do have spaces in a brand new run that<br />

takes in all of the best scenery London<br />

has to offer. The London Landmarks<br />

Half Marathon is a brand new, closed<br />

road, central London run. It is the only<br />

half marathon to go through both the<br />

City of London and City of Westminster.<br />

Despite the event being some way off we<br />

expect our spaces to be in high demand<br />

and therefore it is suggested that you<br />

register your interest as soon as possible<br />

by emailing jay@pituitary.org.uk<br />

events continued on back cover<br />

Pituitary Life | summer 2017


news Raising awareness<br />

23<br />

Paris Marathon – Our thanks to pituitary<br />

patient Ketan Mistry who ran his first<br />

ever marathon at the Paris Marathon and<br />

managed to raise a whopping £5,000.<br />

Our thanks to his employers UPS who<br />

match funded £1,000<br />

Coffee morning - Kristina Painting<br />

who is a regular fundraiser for us held a<br />

coffee morning with friends that raised<br />

£50 towards our funds.<br />

London Marathon – Hayley<br />

Baird and Andy Argile were our<br />

representatives at this year’s London<br />

Marathon. Pounding the pavements of<br />

London this pair of runners managed<br />

to raise over £3,000 for us with Hayley<br />

splitting her fundraising between us and<br />

the Virgin Atlantic Foundation whilst<br />

Andy split his fundraising between us<br />

and the Brain Tumour Research charity.<br />

Bohunt School completed their charity<br />

of the year fundraising and managed to<br />

raise a fantastic £1,000 during the course<br />

of the year. Their notable fundraiser was<br />

a silent auction.<br />

Charity of the year - Milton Keynes<br />

Grand Union Rotary club held a race<br />

night which added £750 to their charity of<br />

the year fundraising and then a barn dance<br />

which further boosted the coffers, taking<br />

the running total to over £4,000. Our<br />

thanks to President, Susan Jackson, for<br />

nominating us as the beneficiary during her<br />

term in office.<br />

Brighton Marathon – Huge<br />

congratulations to Nina McNeill,<br />

our Marketing & PR Manager, Fraser<br />

Cardow and Patrick Meyer who all<br />

completed the Brighton Marathon<br />

between them raising over £2,000<br />

Sticky Fingers Bakehaus opened<br />

in Bristol and they kindly allowed our<br />

member, Jacqui Bryson, to hold a<br />

fundraiser on their opening day. They<br />

managed to raise a fantastic £145 in the<br />

process.<br />

Pen-Y-Fan climb – Our annual Pen-y-<br />

Fan climb took place on May 21st and<br />

we saw over 20 people join us helping to<br />

raise a fabulous £2,000 in the process.<br />

Mr & Mrs Newson from Kent ran<br />

the Lydd Half Marathon together &<br />

raised a whopping £120 in the process.<br />

Pat Mumfield and friends held an<br />

afternoon tea party in Wakefield and<br />

raised £116. A great time was had by all.<br />

Pop the cork! Nina Smith held a New<br />

Zealand wine tasting evening with her<br />

friends and raised a brilliant £170!<br />

Isabella Andrews appeal annual Golf<br />

Day – This took place on May 14th and<br />

raised a fabulous £2,000. This takes the<br />

total raised by the family and friends of<br />

Isabella past £20,000 in the past 4 years.<br />

Thanks to Garry Park for his tireless<br />

efforts in organising this successful event<br />

year on year.<br />

Sheffield Ladies Circle – The ladies<br />

at Sheffield Ladies Circle chose<br />

us as their charity of the year and raised<br />

the fantastic sum of £300 during the<br />

year by organising events such as coffee<br />

mornings during the year.<br />

Zipping to success – Our volunteer,<br />

Nigel Tinsley, took on the largest<br />

zipwire in the Northern Hemisphere at<br />

Zipworld Snowdonia and managed to<br />

raise a staggering £500 in the process ■<br />

Pituitary Life | summer 2017


2017/2018 Events (continued)<br />

The Pituitary Foundation Tea Party<br />

Catch up over a cuppa, enjoy<br />

some gorgeous treats – and the<br />

money you raise at your Tea Party will<br />

help us make sure no one has to face a pituitary diagnosis in<br />

isolation. Sign up for your free Tea Party fundraising kit, filled<br />

with everything you need to host a brilliant get together.<br />

Invite your friends, your family or quite simply invite whoever<br />

you want! The important thing is that you invite the people that<br />

matter to you so that you can enjoy yourselves and raise vital funds.<br />

Bake those cakes, stock up on the Pimms and prosecco or simply<br />

stick to a non-alcoholic tea party. The choice is yours entirely and<br />

we know that whatever you decide to do you will make it amazing<br />

in honour of the thousands of pituitary patients who rely on our<br />

support.<br />

For a fundraising kit that contains everything from balloons to<br />

baking recipes please email jay@pituitary.org.uk<br />

GO ORANGE FOR AWARENESS MONTH<br />

in the office - at school, college, wherever you want<br />

We are launching this campaign in August and we are asking if you can show your support<br />

by holding a ‘Go Orange’ event. This is the perfect fundraiser at school, work, college or<br />

university. The concept is simple, just wear something orange, have fun and ask for donations.<br />

Email fundraising@pituitary.org.uk to pre-order your FREE fundraising kit<br />

Vital awareness<br />

As you will be only too aware, there is a lack of awareness of pituitary conditions and if you choose to hold a ‘Go Orange’ event it<br />

will help to increase awareness of pituitary conditions in your community. Whether that’s the working environment, school or indeed<br />

anywhere else. Please get involved to raise awareness! To register for your free fundraising kit, packed with all things that you need such<br />

as invites, posters and games please email fundraising@pituitary.org.uk<br />

Contact us:<br />

Editor: Pat McBride: 0117 370 1315 or pat@pituitary.org.uk<br />

Patient support & Information Helpline:<br />

0117 370 1320 (Monday to Friday 10:00am – 4:00pm)<br />

or helpline@pituitary.org.uk<br />

Endocrine Nurse Helpline: 0117 370 1317 (10:00am to 1:00pm<br />

and 6:00pm to 9:00pm on Mondays, also on Thursdays 9:00am to<br />

1:00pm)<br />

Main switchboard: 0117 370 1333<br />

or enquiries@pituitary.org.uk<br />

General enquiries for non-patient support enquiries<br />

Please use this number and email for:<br />

• Website and log-in issues<br />

• Publications orders<br />

• Merchandise<br />

• Conference<br />

• Any non-patient support related enquiries<br />

Membership enquiries<br />

If you have an enquiry specifically relating to membership please<br />

contact membership@pituitary.org.uk or main switchboard<br />

0117 370 1333.<br />

Fundraising enquiries<br />

If your enquiry relates to raising funds please contact fundraising@<br />

pituitary.org.uk or main switchboard 0117 370 1333.<br />

The views expressed by the contributors are not necessarily those of The Pituitary<br />

Foundation. All information given is general - individual patients can vary and<br />

specific advice from your medical advisors should always be sought. We do not<br />

endorse any companies nor their products featured in this edition.<br />

© 2017 The Pituitary Foundation<br />

• Registered company number 3253584 • Registered charity number 1058968<br />

The Pituitary Foundation<br />

86-88 Colston Street, Bristol, BS1 5BB<br />

Working to support pituitary patients<br />

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