Patients living with an incurable condition will see an overhaul of how treatment is delivered due to UK-first guidelines to tackling patchy care for rising numbers of people with a debilitating bowel disease.
Teleconsultations, dedicated nurses and improved access to psychological support and dieticians will form part of the new Scottish blueprint for treatment of inflammatory bowel disease (IBD).
This is an important long-term condition in Scotland. Numbers continue to rise and it could be that between 50,000 and 100,000 are diagnosed with itDR IAN ARNOTT
Scotland has the highest incidence of IBD in the UK, with around 26,000 people affected by conditions such as Crohn’s disease or ulcerative colitis, which cause diarrhoea, stomach pain and extreme fatigue.
Concerns have been raised over a rapid rise in patients as Edinburgh University research recently discovered a 33 per cent rise in diagnoses among under-16s in the past five years.
Dr Ian Arnott, a consultant gastroenterologist at the Western General Hospital in Edinburgh and one of the report’s authors, said: “IBD is an important long-term condition in Scotland.
“Numbers of patients continue to rise and it could be that somewhere between 50,000 to 100,000 people are diagnosed with it.
“Effective medical and sometimes psychological treatment delivered through a multi-disciplinary team can help to get people back to work and back to life.
“The goal should be a return to normality rather than normalising a poor quality of life.”
The new standards were prompted by an UK-wide audit which found inconsistent levels of care, as fewer than a third of hospitals had adequate numbers of IBD nurses and only 25 per cent had clear access to psychological support.
Campaigners said the condition costs were comparable to major diseases such as cancer and diabetes, as the Scottish NHS spends £72 million a year on IBD.
Dedicated IBD nurses can reduce hospital visits by 38 per cent and reduce costly inpatient stays by a fifth, the research group found.
Dr Gregor Smith, Scotland’s deputy chief medical officer, welcomed the blueprint which he said could be used to inform care across the whole of NHS Scotland.
Helen Terry, director of policy at Crohn’s and Colitis UK, which collaborated on the report, said: “The National Blueprint, when implemented by NHS Health Boards, will go a long way to improving IBD health care in Scotland for the 26,000 people living with Crohn’s Disease and Ulcerative Colitis.”
Mental health nurse Kirsty Gibson knows first hard how debilitating these conditions can be.
The 26-year-old was diagnosed with ulcerative colitis when she was seven, as well as a rare liver condition called primary sclerosing cholangitis in 2010.
Ms Gibson, from Ayr, did not get an IBD nurse until she was 18, which she said has made a big difference to managing her condition.
She said: “Often I would have to wait in excess of six hours in A&E before being assigned to a ward that my consultant or nurse is not attached to. Then I would have to wait 24 to 48 hours to get the care I need to treat my IBD flare.”
Now she can call her nurse who can quickly arrange the care she needs.