Expert Patients Programme | Course Testimonials from Patients

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. Only 3% of patients get Burkitt Lymphoma.

Anna - Farnham

“The course has definitely helped with my confidence levels and I feel brighter.”

During late 2004, the vision in my right eye went blurry. I was referred to Frimley Park with optical neuritis. In about April 2005, I went for an MRI and a follow-up with the neurologist who told me that I was doing fine. Then, in January 2008 I had bronchitis which wouldn’t go away. I had difficulty walking, I kept falling over, I was so tired and I felt very low and depressed. By April my sister contacted the multiple sclerosis nurse who suggested I took a 5-day course of steroids and I got a lot better very quickly. Another MRI and the diagnosis of Relapsing Remitting Multiple Sclerosis was confirmed by my Neurologist shortly afterwards.

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 course run by 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.

Chris - Hull

“The Staying Positive workshops can help anyone who feels different or ‘not normal’ like I did."

Eighteen-year-old Chris Nolan is in his final year studying for qualifications in Public Services and Classical Civilisation at Wilberforce Sixth Form College, Hull. Chris lives with the hereditary condition, Charcot-Marie-Tooth (CMT) disease which is thought to affect around 23,000 people in the UK.

Although only formally diagnosed at the age of five, Chris was born with CMT and both his mother and younger sister also live with the condition although all are affected to varying degrees and in different ways.

Gary - Luton

“Although it’s only been a few months since I completed the course, it not only helped me while I was doing it, but is still helping me now. I set goals for myself each week; I’ve learnt how to control the effects of my pain and how to have a more positive approach to coping with my depression as I’m doing exercises to keep me mentally active."

Gary, 43 from Luton, Bedfordshire had smoked since the age of 20. He often became short of breath and struggled with tightening in his chest. Whenever he reached the point where he was really struggling, he’d cut back on the number of cigarettes he smoked until the symptoms subsided before starting to increase his use again. It was only after suffering an accident at work that it came to light he actually had asthma and Chronic Obstructive Pulmonary Disease (COPD) which were being made worse by smoking.

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.

Helen - Taunton

“When I recently had an evaluation with the clinical psychologist, she said that I seem to have sorted out these problems myself – and this is as a direct result of the course.”

I was diagnosed with degenerative disease of the spine 6 years ago, in May 2004. I think I originally hurt my spine doing several things – one was lifting a patient at the hospital where I worked, even though I did follow the correct procedure. From then on, my back slowly went downhill, so I went to see a chiropractor who said it was a muscular problem. By July, I was in complete agony. I had an MRI scan which revealed I had cracked a disc and it had prolapsed out of the spinal column. The surgeon suggested I had an epidural. By this time, my nerve pain was excruciating. It was horrendous. I had the epidural in October and this was followed by 3 weeks of semi-relief. I then went back to see the surgeon and he wanted me to have a spinal nerve block which I had in March of the following year. This didn’t provide any relief at all. I went back to the surgeon again, and this time he said I needed a decompression. I was in agony after this and it took me weeks to walk again; it provided no relief at all.

Linda - Portsmouth

“I’m determined to go on holiday on the Eurostar, and the course definitely encouraged me to take the first step. I did weekly action plans to get my passport and felt better once I’d done it because now it gives me something to aim for.”

I was first diagnosed in 1989 with remitting and relapsing MS, but it’s now progressed to secondary progressive MS. At first, the doctors thought I was having a slow stroke because it affected my left side and I was dropping everything and falling over. It was quite horrendous. I was admitted to Southampton General Hospital and they performed a lumbar puncture which was unsuccessful. Then, after I had some diagnostic tests on my brain, the diagnosis of MS was found to be conclusive.

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. I have gone through bouts of depression – it was hard to raise a young family when every year seemed to bring another problem which led to more hospital visits, doctor’s appointments and more treatment.

Lucy - Westminster, London

“I used to be ‘Yes, yes, yes’ to everyone but since the course I am more assertive and I can say ‘No, I’m tired, I can’t do it’. My biggest step forward was being able to say no and voice my opinion.”

I gave up nursing ten years ago because I had cancer. Five years ago they found more cells and then recently they found more, so I’ve had lots of surgery but I’m now getting towards the end of treatment.

Robert - Poole

“I now make a list of what I want to discuss and I put this on the table beside me so that my doctor and others will see it and we can go through it.”

I have had relatively severe asthma for about 20 years that I know of and migraines since I was fairly young, but they have become a real problem in the last 20 years too, causing me to be hospitalised twice. I also have Type II Diabetes for which I diagnosed about 8 years ago. I suffer from sleep apnoea which was only diagnosed 10 years ago, even though I had been experiencing symptoms for a long time before this – probably for about 20 years. I moved 3 times during this period and saw 3 different doctors. I told them all that I was permanently tired, but it took a long time to get a diagnosis. I was officially diagnosed with angina 2 weeks ago after an angiogram and I’m currently waiting for stents.

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 has a full and busy life working as a driving instructor, looking after her children and caring for her husband who lives with bipolar disorder. But just a few short years ago, prior to taking part in an Expert Patients Programme course, she was on anti-depressants struggling to cope with the effects of her husband’s condition.

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 3½ 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.

Personal stories

Tutors stories

Alan - Bournemouth

Don - Blackpool

Gill - Godalming, Surrey

Kevin - Salford

Course participants stories