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Medical and patient organisations launch first IBD
Service Standards to improve care for patients with
Colitis and Crohn’s disease
10th February 2009. London,
UK. The IBD Standards Group representing the patient
organisation, Crohn's and Colitis UK - the working name for the National Association for Colitis and
Crohn’s disease (NACC) - in collaboration with six
healthcare professional organisations will tomorrow
launch the first Service Standards aimed at improving
the healthcare of patients who have inflammatory bowel
disease (IBD).
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 that
will be launched tomorrow.
Key 2006 Audit findings included:
- 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.
Speaking before the launch, Chairman of the Working
Group and CEO of Crohn's and Colitis UK (NACC), Richard Driscoll, explains, “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 admissions1.
“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.”
The Service Standards will be made widely available to
NHS Managers and Commissioning Organisations throughout
the UK. The official launches start at The House of
Lords tomorrow and will be rolled out to the Scottish
Parliament, Welsh and Northern Ireland Assemblies in
February and March. A dedicated website
www.ibdstandards.org.uk has been created to help NHS
managers, healthcare professionals and patients better
understand the new Standards.
Professor Chris Hawkey, in-coming President of the
British Society of Gastroenterology, one of the medical
bodies involved with the development of the Standards,
explains, “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." ENDS
Editors Notes:
The members of the IBD Standards Group are:
- Association of Coloproctology of Great Britain
and Ireland (ACPGBI)
- British Dietetic Association (Gastroenterology
Group) (BDA)
- British Society of Gastroenterology (BSG)
- British Society of Paediatric Gastroenterology,
Hepatology and Nutrition (BSPGHAN)
- Crohn's and Colitis UK - the working name for the National Association for Colitis and Crohn’s
Disease (NACC)
- Primary Care Society of Gastroenterology (PCSG)
- Royal College of Nursing (Crohn’s and Colitis
Special Interest Group) RCN.
Reference:
1. Robinson A, Thompson DG, Wilkin D, Roberts C. Guided
self-management and practice-directed follow-up of
ulcerative colitis: a randomized trial. Lancet 2001;
358:976-81.
For further information on this release please contact:
Sarah Rogers or Louise Johnson at the Crohn's and Colitis UK (NACC) Press Office
Tel: 01252 790 507 or
sarah@healthcare-pr.co.uk
IBD Standards release.pdf
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