1 in 5

That's the number of young people from our survey that still didn't have access to an IBD Nurse Specialist. These nurses guide and support IBD patients through treatments, surgery and the day-to-day challenges of living with IBD.

The survey showed that IBD Nurse Specialists play a crucial role in helping young people to cope with the impact of diagnosis and treatment. Yet, one in five of these patients still do not have access to specialist nursing - despite the call by the IBD Standards (2009)1 that every IBD patient should have this right of access.

So it was worrying to find that 1 in 5 of those who answered our Young People survey still didn't see an IBD Nurse.

Where available, an IBD nurse was the first port of call for 71% of young patients when they are experiencing a flare, according to the survey. A comparable survey in 2007 found that only 35% of young patients contacted a specialist nurse, suggesting that there is now better access to nurses, and while this reflects a positive development in the management of IBD – there is still room for improvement.

David Barker, Chief Executive of Crohn’s and Colitis UK admits “The young patients themselves pulled no punches when detailing the seriousness of these conditions.  Nurses are key in achieving successful communication with these vulnerable patients which can help mitigate the impact on the individual and on society. These nurse posts must be protected from cuts, and their numbers increased still further.”

“They need to look at how treatments may affect lifestyle, not just how they will try to control symptoms,” was a thread running through responses to questions about communication with their healthcare team. Young people want more frequent communications, including email, with their healthcare professionals and pointed out how difficult it can be to talk to their consultant, in the absence of an IBD nurse.

Award-winning Joy Mason, IBD nurse specialist at Colchester Hospital University NHS Foundation Trust, explains, “The incidence of Crohn’s and Colitis appears to be increasing, occurring most commonly in teenagers and young adults, with their disease being more extensive and requiring more surgery than adult onset IBD^2,3.  Access to support and help is more vital in this age group than ever before. Certainly, major improvements have been made however; there is still work that needs to be done, especially in training nurses in the care of young people with IBD.”

Young patients also expressed their frustration when healthcare teams failed to point them in the direction of the charity and the help it offers e.g. Newly- Diagnosed Patient Packs. Crohn’s and Colitis UK has launched a new dedicated micro-site www.MeandIBD.org aimed at young people and teenagers with IBD, offering support and information.

To read the reports click here.

REFERENCES

1         1. Quality Care Service Standards for the healthcare of people who have inflammatory bowel disease (IBD). © IBD Standards Group 2009.

2.       2. Rising Incidence of Pediatric Inflammatory Bowel Disease in Scotland. Inflamm Bowel Dis Volume 18. Number 6. June 2012 Henderson P et al.

3.       3. Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology. 2012 Jan;142(1) Molodecky NA et al.