Gastroenterology Today Summer 2021

NEWS
National Report shows
Crohn’s and Colitis healthcare
urgently needs improvement
• Evidence from over 10,000 people with Crohn’s
or Colitis and 72% of specialist IBD health
services reveals that care across the UK is
costing some patients their health and the NHS
millions in unnecessary emergency treatment.
• COVID-19 has made worse issues such
as delays in diagnosis, long waits for
investigations and surgery, and little access
to much needed psychological and dietetic
support.
• Crohn’s & Colitis UK, the UK’s leading
charity for Crohn’s and Colitis, as part of
IBD UK, is calling for more resources and
support for services to deliver better care
for the half a million people living with this
complex condition.
• IBD must be recognised as an NHS priority
with a clear government strategy in all four
nations over the next 5 years.
A new report from IBD UK – a coalition of
leading health specialists in Crohn’s and
Colitis care, including charities, 17 professional
organisations and Royal Colleges - reveals
a UK-wide picture of IBD care which was
already stark prior to the COVID-19 pandemic.
The ‘Crohn’s and Colitis Care in the UK: The
Hidden Cost and a Vision for Change’ report 1
is the most comprehensive assessment of UK
care ever undertaken in the UK.
Sarah Sleet, CEO at Crohn’s & Colitis UK
and Chair of IBD UK summarises the current
state of play: “Crohn’s and Colitis are serious
conditions which aren’t taken seriously.
Unacceptably high levels of emergency
care and delays to diagnosis, investigations,
and surgery, exacerbated by the COVID-19
pandemic, are signs of services under
pressure and a model of care which is not
working. The report sets out a vision for
change – this needs to be prioritised by
governments across the UK and supported
with a defined long-term strategy.”
Diagnosis is taking too long
The report found that it is taking too long
for people with Crohn’s and Colitis to be
diagnosed, delaying their treatment and
support and resulting in potentially avoidable
flares and emergency care. Of over 10,000
people responding to the survey, a quarter
(26%) waited over a year for their diagnosis,
41% visited A&E at least once before
diagnosis, and 12% visited three times. For
everyone with Crohn’s and Colitis, almost three
quarters (72%) of admissions to hospital were
an emergency. This should not be the norm
for people with IBD. Not only does this have a
human health impact, but it is incredibly costly
to the NHS as the report showed that the cost
of managing someone in a flare is up to 6
times higher than when they are in remission.
Jacob is 19 years-old and lives with Crohn’s.
“Over 1–2 years before I was diagnosed, I
went to the GP several times. My diagnosis
was sudden and scary. At 4am one morning, I
was in terrible pain and couldn’t move an inch.
I felt like something inside was going to pop,
so an ambulance was called. I had a CT scan
which showed that my bowel was perforated
and I had contracted sepsis. I needed
emergency surgery, which resulted in a stoma
being formed to allow my bowel to rest... It had
a big impact on my mental health.”
Effects outside the gut are overlooked
Once diagnosed, care for people with Crohn’s
and Colitis is not proactive and is focused on
medication, rather than the wider impact of
the conditions. People are often left struggling
with severe pain, extreme fatigue, anxiety, and
problems outside the gut, with 89% of people
reporting they found it hard cope with having
Crohn’s or Colitis over the previous year.
Moreover, only 1 in 10 people (10%) said they
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