New research has revealed that more than 24,000 people in Wales have Crohn’s or Colitis, many more than the 15,000 originally thought.
This data shows that there is a large, hidden group of people living with Crohn’s and Colitis that Health Boards in Wales are not currently planning for as they are unaware they exist. We are calling for Health Boards to review their current services to ensure they meet the needs of everyone with Crohn’s and Colitis.
The research was funded by Crohn’s & Colitis UK and undertaken by the Secure Anonymised Information Linkage (SAIL) Databank at Swansea University and looked at the numbers of people with a confirmed diagnosis of Crohn’s or Colitis in their GP records across Wales in 2008-2017.
In a 2019 survey on IBD services in Wales, most Welsh Health Boards reported using the previous estimate of 1 person in every 250 when planning services for people who had Crohn’s or Colitis. These new figures show the number living with these conditions is nearly double that.
Until now, there was limited reliable data to help understand how many people in Wales are affected by the conditions. Previous estimates had suggested around 15,000 in Wales and 300,000 people across the UK. The study shows that the number of people living with these debilitating and misunderstood conditions is much greater than thought, approaching 25,000 people in Wales, and 500,000 people across the UK (nearly 1% of the population).
We are highlighting this hidden group of people, calling for Health Boards to re-examine their current IBD services. We want these to be reshaped to meet the needs of far more people with Crohn’s and Colitis than previously understood, through support in the community, more IBD nurse specialists and the smarter use of remote monitoring and access technology.
There is a hidden group of patients right across Wales who may be seeking access to hospital services not designed to cope with the numbers that exist in reality. It is no wonder that staff in frontline IBD teams report being under huge pressure. We need to see Health Boards using better data to meet the needs of people with Crohn’s and Colitis, to help their pressurised IBD teams and to support those living with these debilitating conditions who desperately need better care.
One of the core datasets held in SAIL is the Welsh Longitudinal General Practice dataset (WLGP) which includes records held by 79% of GP practices in Wales. This includes records for diagnoses, observations, symptoms, referrals and prescriptions. SAIL also includes records of all people who at some point have been registered with a GP in Wales. Researchers used this data, looking at over 3 million records, identifying cases with a confirmed code for Crohn’s Disease, Ulcerative Colitis, or other forms of Inflammatory Bowel Disease.
The research noted that the number of people diagnosed with Crohn’s and Colitis is increasing in almost every age group but particularly in the 18-29 age group. This could be a particularly difficult age to be diagnosed as people explore personal relationships and independence, and identity.
We know very little about people with Crohn’s and Colitis who don’t attend clinics regularly and don’t know how symptomatic they are. It makes it difficult to assess their impact on NHS services. This ‘hidden’ group are there, and many will be having prescriptions and using other health resources. Now we have a better understanding of the numbers, it would be worthwhile for further studies to assess whether there are unmet needs in these patients, and the impact of their IBD on quality of life.
Many people in Wales living with Crohn's and Colitis report receiving good care from their IBD team, but this is not universally the case.
Crohn’s on its own can be life limiting and challenging. I struggle daily with feelings of fatigue and waves of tiredness. I’m nervous to be far from a toilet in case of an accident. My IBD Nurses, my Gastroenterologist and my Haematologist have all been great, as have Medical Day Unit staff and my local GP. I am aware that this excellent support network, spanning both primary and secondary care, is not a common experience.
Whilst the results of this new study show that there are many people in Wales who desperately need better care, we hope that access to this data means that Health Boards can plan better, improve support networks, and ensure everyone in Wales with Crohn’s or Colitis has a positive experience like Nick’s.
The SAIL study completed in February 2020. You can find more information about the databank by visiting their website. If you would like a copy of the report, please email firstname.lastname@example.org.