We know that care for people with Crohn’s and Colitis can vary quite a lot and this needs to change.
Some people are supported by a team of IBD specialists, involved in decisions about their ongoing care and have access to services like psychological and dietetic support. Whereas others can wait a long time for their diagnosis, can struggle to know what to do when in a flare and feel they don’t know who to turn to when they need advice.
Because of these variations in care, Crohn’s & Colitis UK helped form IBD UK, a partnership of 17 patient and professional organisations, including the British Society of Gastroenterology, the Royal College of Nursing and the Royal College of Physicians. IBD UK’s aim is that everyone, wherever they live and whatever they age, should receive safe, consistent, high-quality and personalised care.
To make sure this happens, IBD UK have developed the IBD Standards. These are a framework of statements that set out what high-quality care looks like at every point of the patient journey, from pre-diagnosis, to surgery and ongoing care.
The standards include statements that outline things such as the process that should be followed if someone with possible Crohn’s or Colitis visits their GP, timeframes for advice, investigations and treatment and what information and support should be provided to help people to manage their condition.
The whole reason for putting the standards in place is so patients know what standard or care they should be able to receive. If people know what standards of care are available, and what support they should be getting, they can drive their own care forward.
This builds on previous versions of the IBD Standards in 2009 and 2013 but this time the IBD Standards have seen a real transformation. They put people living with Crohn’s or Colitis at the centre, reflect a more holistic view of care and take recent technological advances into account.
The 2019 IBD Standards offer an exciting opportunity for people with Crohn’s and Colitis to get directly involved in their care, have their say and help create real change.
The IBD Standards provide a unique opportunity to lead to real changes in the way care in the NHS is delivered to people with Crohn’s and Colitis. The hope is that the results from the IBD Benchmarking Tool and IBD Patient Survey will create a significant impact, influence decision making, and raise the profile of IBD on the NHS agenda. We want to help people with Crohn’s and Colitis take control of their care and learning about the IBD Standards and what you should expect to receive from your care, is a fantastic way to do so.
For the first time IBD services will be assessed against the statements, through both a service self-assessment tool and the IBD Patient Survey. People living with the conditions will be able to say anonymously what their IBD service is doing well and things they could do better.
The IBD Patient Survey launches on 8th July – remember to get involved and help push through change.