The first Service Standards for the care of patients with inflammatory bowel disease (IBD) was launched yesterday at The House of Lords. This was marked by Lord Newton of Braintree as “a major development for people with Colitis and Crohn’s disease”. The simple truth is that patients in the UK, unless they are willing to pay for the latest drugs, or live in areas with excellent NHS service provision are not receiving the levels of care that are now clearly available.
Inflammatory Bowel Disease Symptoms
Ulcerative colitis and Crohn’s disease have a profound impact on the lives of about 240,000 patients and their families in the UK. Many are diagnosed with these life-long conditions in their teens or early twenties. The distressing symptoms of urgency, diarrhoea, pain, profound fatigue and anaemia often follow unpredictable patterns of disease ‘flares’. However, with appropriate healthcare provision most patients can sustain economically productive and family support roles.
The new IBD Service Standards reflect the findings of the 2006 National Audit of adult IBD Services and Care, to which 75% of hospitals in the UK submitted data. The voluntary audit demonstrated a widespread professional commitment to evaluation of IBD care and identified many aspects of good organisation and practice. However, the Audit also highlighted unacceptable variations both in service provision and organisation of important aspects of clinical care. These variations reflected the lack of any plans or standards for IBD and led directly to the commitment to develop the Service Standards for IBD.
- One third of hospitals had no dedicated gastroenterology ward.
- Forty four per cent had no specialist IBD nurses - with IBD symptoms often making travelling and hospital visits virtually impossible, nurse-run help lines offer immediate, highly qualified advice to ensure that patients are either prioritised for an out-patient appointment or admitted to hospital.
- On average, dietitian sessions dedicated to gastroenterology were just two per week.
- Less than half of hospitals provided joint or parallel gastroenterology/surgical clinics – since 50-70% of patients with Crohn’s disease will require surgery within 5 years of diagnosis, there must be defined arrangements for joint discussion with patients who are too unwell to wait until the next available clinic appointment.
- Forty six per cent of outpatients with Crohn’s Disease received continuous systematic corticosteroid therapy for longer than three months, increasing their risks for osteoporosis and steroid dependency.
Inflammatory Bowel Disease Treatment
Chairman of the Working Group and CEO of NACC, Richard Driscoll, explained, “The new IBD Service Standards will focus more attention, by local health services, onto the quality of their IBD care. For example, we need to ensure that when patients are diagnosed they receive the information and support they need to understand and manage their illness better, hopefully enabling them to get back to a near normal family and working life.
“We want more patients to receive specialist care and best-practice treatment consistently and without delay. All patients should benefit from the support that can be given by IBD nurses and have greater access to dietitians. With improved access to specialist advice, care for disease flares and effective treatment can begin sooner. A major study has shown that this improves patients’ lives and reduces NHS outpatient appointments and admissions.
Specialist IBD care
“For those whose illness is more severe and not responding well to treatment, they will benefit from the specialist knowledge of a multi-disciplinary team and be better able to participate in the important decisions about treatment choices such as surgery. Overall, we recommend that IBD Services should be meeting these new standards by September 2010.
Professor Chris Hawkey, in-coming President of the British Society of Gastroenterology, one of the medical bodies involved with the development of the Standards, explained, “The BSG believes strongly in minimum standards of care for patients with ulcerative colitis and Crohn’s disease, and that they should focus on practical matters that are of importance to patients. "These proposals will not only help to improve a patient's experience while in hospital, but they will not be expensive to implement. Much of what is proposed can be achieved simply by high professional standards and proper organisation and deployment."
Drug treatment for Inflammatory Bowel Disease
IBD patient, Charlie Croft told the audience that if felt he was in advances stages of recovery thanks to the fact that he was offered one of the latest biological drugs – Humira. He was only offered this drug because he was lucky enough to be part of a clinical trial. The inference was quite clear – these new drugs should be more widely available.
New treatment for Inflammatory Bowel Disease
New standards of care are already being implemented in east London under the direction of the Consultant Gastroenterologist, Dr Premchand, at Queen’s Hospital in Romford.