New help for patients

MORE and more people now seem to be suffering from chronic illnesses.

Despite better medication, dealing with a long-term condition like diabetes, stroke or heart disease can destroy people's lives.

But now the patients are taking control through the Expert Patient Programme and are making sure they make life worth living again.

JUST two years ago Rosemarie Cowdell thought her life was over.

Her diabetes had got the better of her, she was in constant pain, could barely walk, had reached the depths of depression and was turning into a recluse.

But in October 2002, her life was turned around. She took control and last year managed to go on the holiday of a lifetime around the world for four months.

Rosemarie had, somewhat reluctantly, been introduced to the Expert Patient programme.

Although the 72-year-old of Belle Vue Road, Ipswich already thought she was doing everything she could to manage her condition, she was in for a surprise.

She said: "My husband said I knew I had to change things.

"The first morning that I went and met the other patients I thought they looked like a fairly health bunch – I soon found out otherwise.

"Some of the group were half my age, three of them had young children and two had young children with a chronic condition.

"I suddenly felt very humble."

The group did not talk about their conditions. Instead they talked about the things they have in common, like pain and anxiety – something they had found it difficult to talk about with anyone else.

Rosemarie said: "We talked about how you deal with things.

"It is very hard to tell GP's how you feel and especially family because you don't want to worry them or upset them.

"But we all felt that we could open up to one another – I told people things that I had never told anyone else before."

After six weeks many of them could see a future again and Rosemarie and another patient had become course tutors themselves.

She said: "One man has Parkinson's disease. When he first turned up he stood at the door and did not want to come in.

"One of the tutors went and took him by the elbow and sat him down – he could not even look at anyone.

"If you could see him now you just would not believe it.

"He said that he was so consumed with his condition that he did not have time for life itself."

Now that man is also a tutor and is helping others to take control of their lives.

Rosemarie's story is probably similar to that of many people dealing with a chronic condition.

She developed diabetes in 1957 after the birth of her first daughter but had always managed it successfully without many side affects.

But diabetes is an ageing disease and gradually her condition started to deteriorate.

She suffered from heart disease and had to have a triple bypass. After that she developed a painful nerve condition called neuropathy and also had to deal with arthritis and asthma.

Although it was painful to walk she refused to get into a wheelchair because she was frightened she would end up in one forever.

Sinking into depression, she feared for her future – not fearing death itself but the number of ways that she could die through her condition.

Once an outgoing woman with lots of friends she would get her husband Jack to turn friends away and stopped meeting up with them.

Today, thankfully, her life is unrecogniseable compared to the one she was living two years ago.

She said: "I learned on the course that your main priority is yourself.

"I now have a little saying to myself that being selfish is not always bad.

"Sometimes you have to be selfish to look after yourself better which helps the people around you because you don't have to depend on them so much."

The aim of the course is not to tell people a list of do's and don'ts but instead to show them a series of strategies of how to cope and how to change the way they think and feel.

Rosemarie said: "Lots of negative thoughts creep in when you have a chronic illness, it is very depressing.

"But the course teaches you how to make life more interesting by planning something to do each day.

"Sometimes those promises have to be broken but you don't dwell on the things you can't change.

The course actually finished two years ago but the group is still firm friends and try and meet up once a month.

Rosemarie's life is now back on track and while she is conscious of the fact that she does have a chronic illness, she refuses to let it get in her way.

Now she cries with happiness as she talks about how much better she is – before even though she felt like crying with self-pity she refused to let the tears flow.

Her holiday around Singapore, Australia, New Zealand, America and Canada was something she and Jack had promised themselves on her retirement, but when that time came she was just too ill.

But thanks to doing the course she got on the plane and had the most wonderful time of her life.

She said: "We were in Oregon and there was this town which was full of wood and there was a massive arm chair with a seat higher than my head.

"Jack said he would love to get my photo in it but I said there was no way I would be able to get up there.

"The next thing I know there is a massive man next to me, a true lumberjack who just grabbed hold of me and put me in the chair – my feet did not even touch the edge of the seat.

"I said I could not get down so he just said 'fall on me'. That's exactly what I did, but when I turned round to say thank you, he had gone – people were just so kind."

And throughout her whole battle with her condition, Rosemarie has not forgotten the support of her husband and family.

She said: "My husband is a total martyr and I just cannot praise him enough.

"He never complains and just gets on with it.

"He can see the improvement in me through the course and said to me that he has got back the girl that he married."

n. To find out more about when Expert Patient programmes are taking place contact the Expert Patient Programme Co-ordinator for Suffolk on 01449 618232 or at Freepost NAT6070, Stowmarket, IP14 1ZZ.

PANEL

Rosemarie was involved in the pilot expert patient course, which has since been rolled out across the county.

It is a six week course which helps to boost patients self esteem and how to deal with their condition.

Set up by the Department of Health in April 2002 it is based on research from the United States and the UK over the last two decades which shows that people living with chronic illnesses are often best placed to know what they need in managing their condition.

Providing them with necessary self-management skills can make a tangible impact on their disease and quality of life more generally.

Courses consist of three hour weekly sessions for six weeks covering topics such as learning pain management techniques, relaxation and exercise, diet, dealing with symptoms of illness, relationship with health care providers and planning for the future.

According to the NHS the predominant pattern of disease in this country during the second half of the 20th Century and the new half of this century is of chronic rather than acute disease.

Diseases such as cancer, heart disease, stroke and arthritis can and do kill but more often are a burden that people carry from middle age through to old age.

Information source: NHS website – www.expertpatients.nhs.uk

n. What do you think about patients taking control of their care? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN or e-mail eveningstar.co.uk