IBD may be invisible but we the patients are NOT

Melissa Fletcher has been a member of Crohn’s & Colitis UK since she was diagnosed with Crohn’s in 2003. Since then she has been an awareness raiser and an active fundraiser for the charity. Melissa is a Patient Representative for IBD UK.

I was diagnosed with Crohn’s in September 2003, after first experiencing symptoms in May. My condition took a long time to get under control and I’ve tried many medications available including immunosuppressants, and biologic infusions. I was an early user of Ustekinumab and still regularly inject this in order to maintain my remission.

In 2015 I had major surgery and have been admitted into hospital on several occasions. My experiences of numerous medications and surgery means I am quite familiar with the services are on offer to people living with IBD. I think it’s really important for people with IBD to support themselves by proactively managing their condition and I am keen to influence other patients on how to do this effectively.

I am a patient member of IBD UK and recently helped launch the IBD Standards at the British Society of Gastroenterology Annual Meeting in Glasgow. It was an exciting opportunity to present to a room full of top experts in IBD and make sure the patient voice was heard.

I am also actively involved with the University Hospital Southampton’s Patient Panel where we have involvement with consultation around service delivery, and educating and encouraging patients to be involved with the services they receive. We also help the hospital run an IBD open day for the patients that access the service in order to support and educate them further and provide them with an oversight of the services they may receive.

The services I now receive are very different to those I experienced when I first entered the world of IBD. There are flare lines, joint clinics (IBD/rheumatology), nutritionist support, patient portals, research programmes and IBD Nurse Specialists. The service delivery for IBD users is increasing - we just need it to be consistent for all service users across the country.

When I became ill again in 2013, I was blown away by the advice provided to me in phone calls by the IBD nurses which definitely made a difference to my disease management and to my mental health.

I am an advocate of taking ownership of disease management and self-directed support, raising awareness of IBD and ultimately finding a cure. I have been actively involved with Crohn’s & Colitis UK on the personal grants panel, as well as fundraising, volunteering and joining several of the WALK IT events.

It has been a worthwhile and empowering journey being involved with amending and launching the IBD standards. I feel that the patient voice has been listened to and is key to the core development of service delivery. If people know what standards of care are available, and what support they should be able to access, they can proactively drive their own care forward.

I am a firm believer in patient education and involvement, and one of my mantras is, ‘We need patients to help to shape the future of our services

IBD may be invisible but we the patients are NOT…..

Patients with IBD are:

Incredible

Brave and

Determined

Make sure you have your voice and get involved in any way you can. Together we are stronger.