Ongoing research now suggests that more than 500,000 people in the UK have inflammatory bowel disease, a big increase on the previous estimate of 300,000.
IBD UK is a coalition of 17 professional and patient bodies committed to driving quality in IBD care. Having all the clinical disciplines involved in IBD working alongside patient organisations has enabled them to define what quality holistic patient care looks like. This new report compares current service provision against those standards.
They found examples of excellence, but also a lot of variation across the country. Sadly, too many people are still waiting too long for a diagnosis, with 26% waiting more than a year, and 41% having to go to Accident and Emergency at least once before being diagnosed.
A lot of the care people are receiving is reactive, with the main focus being on medication to treat symptoms. While that’s important of course, it overlooks other issues people might have, like pain, fatigue and anxiety. People need personalised care, and help with managing their own condition. They need faster access to specialists, for advice and treatment when their symptoms flare up. At the moment the lack of proactive support results in expensive emergency care.
The report identifies the solutions, and highlights the key steps that need to be taken urgently to address the situation: improvements in diagnosis and information, personalised care, better access to specialists and better multi-disciplinary team working.
For me, IBD UK is a great example of effective stakeholder collaboration, and why it matters. People living with long term conditions have complex needs that change over time. They need a holistic approach to support and care, provided by a well-coordinated team. What better way to model this approach than for the clinical and patient groups to work together to understand the challenges, define the solutions and commit to making them happen?
There’s a lot to be done, but a great team dedicated to working together to make it happen.