Experts claim 'patchy' care fails lifelong sick

An "epidemic" of inflammatory bowel disease (IBD) has led to more young people suffering from conditions such as Crohn's disease in recent years.

But doctors say that in some parts of the country, services are not able to cope with the rising number of patients because of a lack of funding.

They are now taking their fight to the Scottish Parliament with a reception tomorrow to try to ensure standards are applied across Scotland to combat the patchy care being seen.

Crohn's disease and ulcerative colitis are the two diseases known as IBD, affecting around one in 250 people. The symptoms can include stomach pains, diarrhoea and weight loss.

Treatments include drugs to suppress the immune system, while around half of patients with Crohn's disease will need an operation to remove damaged parts of their bowel within five years of being diagnosed.

Standards for the best levels of care for IBD patients were published last year by the National Association for Colitis and Crohn's Disease (NACC).

But experts working with Scottish IBD patients said in some places the care standards were "patchy and sub-optimal".

Daniel Gaya, a consultant gastroenterologist at Glasgow Royal Infirmary and chair of the Scottish IBD Interest Group, said: "There's an epidemic going on in Scotland with the condition just now. To a large extent it is incurable and the peak age of onset is teenagers. It affects their employment potential, education and sexual development."

Among adolescents in Scotland, cases of Crohn's disease have increased from 2.3 per 100,000 of the population in 1968-83 to 4.7 in 2003-8.

Dr Gaya said at Yorkhill Children's Hospital in Glasgow, doctors were seeing around one new case of Crohn's every week.

But despite the growing number affected, he said in some areas the care being delivered was still not up to standards.

"I see a lot of patients from Dumfries who are referred up in a terrible state because for many years they had no gastroenterologist at Dumfries Royal Infirmary," Dr Gaya said.

"They have got someone in post just now but he is absolutely swamped, whereas at Glasgow Royal Infirmary I think we have got an excellent service. We have got four or five consultants with an interest, two nurses and we have a weekly team meeting.

"We have now got standards we should be working to, dictating what standard of care should be delivered."

Dr Gaya said they wanted regional managed clinical networks set up to help standardise care locally and involve patients in developing services, as well as a drive to meet standards.

Public health minister Shona Robison said: "The Scottish Government is committed to providing care and support for people living with long-term conditions, including IBD."

INCURABLE DISEASE SAPS ENERGY

BERTHA Thompson was diagnosed with Crohn's disease 27 years ago and the condition has seriously affected her daily life.

The 58-year-old said: "It is very scary being told you have something which can't be cured."

During her battle with Crohn's, Mrs Thompson, from Blantyre, has been on several drug treatments and also had surgery to try to combat the symptoms.

"Having Crohn's disease makes it very difficult to plan anything in advance.

"Just getting up in the morning is difficult."

Mrs Thompson was made redundant last year, but said it came at the right time as she was struggling to work with her condition.

Stephen Murphy, 21, also receives treatment at Glasgow Royal Infirmary after he was diagnosed with Crohn's aged just 11.

"I had lost a lot of weight and was bringing back up food. I had no energy," he said.

"My mum took me to the doctors and I got referred to hospital and they did some tests and after about a week I was diagnosed with Crohn's," he added.

Mr Murphy's mother also has Crohn's disease.

The bricklayer has not had to have any surgery so far, but takes drugs to combat his symptoms.