Annie Bushen – Salisbury Support Group Area Co Ordinator
After having had constant headaches and other symptoms for about 20 plus years, I was finally diagnosed with Acromegaly at St Bartholomew’s Hospital in London on the 24th December 1993 – Not the best Christmas present I have ever had.
I saw a wonderful Endocrine Consultant called Professor Wass, he sent me for several tests and then I had an operation in March 1994 to remove some of the tumour. In May 1994 I had a six week course of radiotherapy. I now have Acromegaly, Diabetes Insipidus, Hypothyroidism, Arthritis, Pernicious anaemia and Type 2 Diabetes and have to take over 30 tablets a day and most recently I have been diagnosed with Crohn’s which has stopped me being able to go out very far away from home.
Once I had my treatment and was recovering a little, I was put in touch with The Pituitary Foundation, then affectionately referred to as “Pit Pat”. Talking to staff members and fellow pituitary patients helped me not feel so alone and scared. I was also given information that enabled me to understand my condition a little better.
In 1996 I was asked if I would become a volunteer and start up a Support Group for fellow pituitary patients their family and friends in the Salisbury and surrounding area.
Throughout my treatment my family and friends were very supportive and my husband Steve was my rock, but I have never felt so alone and scared in my life because I couldn’t get any information on Acromegaly, even my GP did not know much about it as it was so rare. My Mum said it was the first time in my life she didn’t know what to do to help me, especially when my moods went up and down so dramatically. I had never done anything like running a support group before but thought if I could help someone else not feel so alone and scared and be able to help them get access to the valuable information from The National Support Office, Help Lines and Support Groups then I would do it.
At the time I was still feeling unwell so for the first couple of years I felt I could only manage to hold a coffee morning at my home every other month. These were very successful so when I started to feel a bit better and had a bit more confidence I officially launched the group in 1998 and have been running it ever since.
I started the meetings at Salisbury District Hospital and now we have our meetings at The Quaker Meeting House in Salisbury. Over the years we have had numerous speakers and have learnt so much, especially from talking to each other.
Since volunteering with The Pituitary Foundation I have been asked to do an article in the Womens Own magazine and then one for The Good House Keeping, which led to me being asked to take part in a phone-in for a local radio station in Leeds. They didn’t write exactly what I said in the interviews but at least it raised some awareness. I was then asked to take part in a DVD for patients diagnosed with Acromegaly. The first one was filmed at my home, I had a large lorry with a whole film crew turn up on my doorstep which was quite an experience and then we did an update version at St Bartholomew’s Hospital in London a few years later.
After I held an auction to raise money for The Pituitary Foundation I was asked to speak on our local radio.
In 1999 Professor Wass approach me to see if I would become a trustee as he thought it would be good to get a patient’s point of view. Steve was then asked to join to give a carers’ point of view and we were trustees for about approximately 14 years.
A group of us went up to the Dept of Health in White Hall with a petition to try and get an epipen type injection for emergency injections.
I have attended HelpLine, Telebuddy and AC training days and weekends and have spoken to numerous pituitary patients over the years. Steve Harris and I manned the Helpline for several months when we were needed in the early days.
A group of us had meetings with Peter Lees who was the surgeon at Southampton Hospital, he asked us to meet up with him to get patients’ views on what they wanted from the Hospital i.e. pre & post op leaflets, etc.
On several occasions I have talked to medical students in Southampton Hospital about Acromegaly and answered their questions about my experiences.
I have arranged 2 Mini Conferences and 2 AC Training / Get Together days.
To raise funds for the Foundation, I have arranged numerous fundraising events –Singing Challenge- Egg Hunt- Moat Walk- Open Gardens – Coffee Mornings – A National Raffle – 2 Charity Auctions – Numerous Local Raffles – etc. At one of the events I talked to a lady and gave her some information who took it to her daughter who was later diagnosed with a pituitary condition a few months later.
What it means to me
Being a volunteer has helped me to experience so many things that I would not have done if I had said no to becoming a volunteer (AC, Trustee, Telebuddy, Help Line, Fundraiser, etc). Admittedly, some of the things were very scary and so totally out of my comfort zone at the time, but I learnt so much from doing them and some gave me great pleasure.
I am so grateful that The Pituitary Foundation (Pit Pat) was started because it has helped so many people including me and my family to be able to speak to fellow patients who do actually know what you are talking about. It has been very interesting and helpful to listen to the numerous speakers on pituitary related topics both locally and at conferences, etc. There are so many ways now to get valuable information – via Website, Leaflets, Facebook, Helpline, Nurse Helpline, etc. that we would not have been able to if it hadn’t started.
I see The Pituitary Foundation like a Wheel:
- The Hub is the Trustees & NSO
- The Spokes are All the Volunteers
- The Rim is the Patients their Carers Friends & Families
All are as important as each other. If there was no hub there would be no wheel, if there were not any spokes there would be no wheel, if there was no rim there would be no reason to have a wheel. If we all work to together and keep the wheel turning we can cover a lot of ground and help a lot of people.
Since volunteering with The Pituitary Foundation I have met a lot of lovely people, some of who I class as very good friends, I have had a lot of experiences, some totally out of my comfort zone, but they have taught me a lot. I have enjoyed being able to be part of a team who helped a lot of people not feel so alone or scared, as I did before “Pit Pat” existed. To hear someone say at the end of a meeting or phone call, that they felt a bit less scared and felt that they have learnt something to help them along their Pituitary Journey is reward enough for me.