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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