Personal Stories

Alan - Bournemouth

“I found that no matter what condition the other participants had, they all experienced the same feelings and emotions as I had.”

Having been very active before I was diagnosed with primary progressive multiple sclerosis (MS) in 1991, I was finding life increasingly difficult to cope with. I still held a responsible position within my company, but had to slowly reduce my hours to compensate for an amazing lack of energy and increasing mobility problems.

I felt this was just another aspect of my life that MS was robbing me of – I had already given up many pastimes and hobbies that I had previously enjoyed. I seemed to be losing control over decisions which would ultimately affect the rest of my life.

Alex - Brighton

“I’ve realised that no mountain is too high to climb – but we must put on the boots before starting, tie up the laces and pack plenty of food!”

Life means a lot to me. Diabetes, a condition which is growing, vast and complex, happens to live with me now (the analogy of a difficult guest in your home springs to mind) but in the past it controlled my every waking moment. I was diagnosed with Type 1 diabetes in May 1995, two days after my 12^th birthday and three days after winning the Sussex Boys Under-12’s Gymnastics Championship.

Ann - Chichester, West Sussex

“The course made me feel like I’d been let out of prison for a couple of hours.”

I became a carer 3 years ago when my partner Nigel had a heart transplant. We had not long been together so it was a difficult time but we managed to get through. As he was starting to get better we got married, but unfortunately two years later, he was diagnosed with Burkitt Lymphoma, a rare type of cancer caused by the anti-rejection drugs he was taking from the heart transplant.

Chloe - London

"My confidence grew session after session and it was great having a chance to relax and talk to others who have had similar experiences."

My name is Chloe Cupid and I was a participant in the Staying Positive Programme run by EPP (Expert Patients Programme). I am 18 years old and currently studying for my A-levels. I have a long term condition - scoliosis, a curvature of the spine which causes me back and shoulder pain quite frequently.

It is a course run for young people to help them self-manage their conditions. At first I had no idea what it was going to be like and expected it to be like school.

Don - Blackpool

"Attending an Expert Patient Programme course was the best single thing that could have happened to help me control my condition."

Don attended an Expert Patients Programme (EPP) course after his rheumatoid arthritis nurse suggested it during one of their sessions. She had initially suggested a telephone based self care course but the idea of a group sharing their experiences and supporting each other appealed more to Don so she suggested EPP.

Georgie - Newcastle

"My life has been transformed over the last two years and I can say with absolute certainty that I owe it all to the Expert Patients Programme."

Georgie Foord has had fibromyalgia since 1997 and was coping well with her exercise regime and careful diet. Attending an EPP course in 2003 helped her to achieve her goal of publishing her own work.

Do you remember that long hot summer of 2003? I was newly retired, bored and restless, drifting aimlessly through the weeks.

Gill - Godalming, Surrey

“Attending a course makes you realise it’s ok to be you – you are more than the pain or the long-term condition you have.”

I was diagnosed with a chronic pain syndrome and coccydynia after a minor accident in September 2004. I had damaged my coccyx and sacrum, and numerous medical interventions to relieve the pain had failed.

Having coccydynia means it is difficult to sit for a long period, which sounds like a small thing but it has quite an impact on daily life – sitting to eat a meal, driving, going to the theatre, using a computer – the list is endless!

Lizzie - South Yorkshire

"Now I achieve what I set out to do and I have learnt that tomorrow is another day!"

I have lived with multiple long-term health conditions including a debilitating connective tissue disorder, arthritis, osteopenia and heart disease for over 20 years. I have had problems with my neck, arms and hands due to ‘cervical ribs’ for most of my life. During that time I have undergone many surgeries and had to make many changes to my life as a result.

Phil - Nottingham

“Through the EPP CIC course I have learnt to pace myself and focus on the things I can do rather than the things I can’t, making me feel more fulfilled and in control of my life.”

Phil Cummings, from the Hucknall area of Nottingham, has suffered with depression for most of his adult life.

The depression started in his late teens, which at the time he found manageable, but by his mid 20’s the depression got worse and Phil turned to alcohol and cannabis to cope.

At the time Phil had been working as a general nurse in London and Plymouth on spinal injuries and orthopaedics for about 10 years.

Safina - Halifax

“At first I thought that I couldn’t spare the time, two hours a week, but the course was a revelation – it showed me there was light at the end of the tunnel and completely turned my life around.”

Safina Wahid, an intelligent and articulate mother of two, has a full and busy life working as a driving instructor, looking after her children and caring for her husband who lives with bi-polar disorder.

Sonia - Folkestone, Kent

“Since the course, I have decreased my medication. I think the combination of increased exercise and increased confidence has helped.”

I was diagnosed with bipolar disorder 3 ½ years ago, when I was almost 29, which, compared to a lot of people, is quite late in life for that diagnosis. I can’t imagine that receiving this diagnosis is ever easy, but it certainly wasn’t for me. I was living and working successfully in Cornwall, but then a combination of stressful events occurred that made me spin into a manic episode. I ended up doing lots of typically manic things - I put offers in on grandiose houses, I got stranded in New York, I hitch-hiked round Ireland, and then eventually I crash-landed at my

Susan - Stoke-on-Trent

“From my first session on the EPP CIC course I felt great relief. I would love to go on the course again!”

Susan, from the Cheadle area of Stoke-on-Trent, was diagnosed with Chronic Obstructive Pulmonary Disease (COPD) in 2004, which came as a complete shock.

The condition, which left doctors puzzled at first, left the grandmother of five short of breath and energy and dependant on daily inhalers.