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Me, myself and IBD – a patient perspective



ON June 28, Crohns and Colitis UK held a reception at the Scottish Parliament for the launch of a new initiative – Scotland Leading the Way- a National Blueprint for Inflammatory Bowel Disease in Scotland, which aims to improve services for the 26,000 people in Scotland living with inflammatory bowel disease (IBD), and I was honoured to be asked by the charity to share my patient experience and what the initiative will mean for patients like me. The event was open to MSPs from across Scotland, sponsored by Clare Adamson, MSP for Motherwell and Wishaw, and featured Dr Ian Arnott from the Gastrointestinal Unit Western General Hospital, NHS Lothian, who introduced the document and Dr Gregor Smith, Deputy Chief Medical Officer for Scotland.

I’m delighted that Scotland is becoming the pioneer of IBD care and is leading the way with a National Blueprint, and I am thrilled that patients, the Government and Crohn’s and Colitis UK have come together to formulate a national plan to ensure that everybody receives the best possible care and to witness an extra-ordinary amount of MSPs support the Blueprint was overwhelming.

Over the years, I have had very different experiences of in-patient care, particularly the admission process. Firstly, and most commonly, I have been admitted via A&E, where I have often waited in excess of 6 hours before the decision has been made to admit me to hospital. Thereafter, I have been admitted to a ward (not the one my consultant or IBD Nurse work) on for 24-48hours, before I get admitted to the medical ward and start receiving the right care and treatment that is required to treat my IBD flare.

Secondly, and an experience that I hope will continue should I require a further admission, I have been able to contact my IBD Nurse with my symptoms, who, in a matter of hours, speaks with my consultant and arranges for my admission. In this instance, I have by-passed A&E and have gone straight to the medical ward where I don’t even get to introduce myself before I am whisked into my bed for the foreseeable future.

This process makes my hospital stay less scary, as I know I am being seen by the right people at the right time (although ideally I don’t want this to happen and I would’ve self managed my condition better, but there are times when my body just says no).

As an out-patient, I have appointments every 6-12 months and 9 out of 10 times, these are either rescheduled or cancelled. I often don’t need these appointments, as I am either in remission, or managing my condition and, after hearing about the possibility of phone reviews or e-mail consultations I was delighted. The nurse in me was saying that this would be a better use of the consultant’s time and the patient in me was saying that it would keep me out of a hospital. There’s just this smell that even when attending out-patient appointments you can’t avoid.

Another reason that I am quite passionate about the National Blueprint being launched is the co-development of a psychological service.

I have been chronically ill since I was 7, at a time when I should have been having sleepovers with my friends, or going out on trips to country parks and zoos, I wasn’t. As much as my parents tried to give me a ‘normal life’, I was terrified of having an accident, so I wouldn’t go. Over time the invites stopped and I became isolated from my friends. I was teased because I “didn’t look sick”. My confidence dipped as did my self-esteem, and I’ve suffered periods of low mood.

I am delighted that steps are being taken, to not only reduce the stigma of mental health with a chronic physical condition, but to improve the access to mental health services, particularly within the IBD service.

I’ve seen many developments over the past 19 years in the way care is being delivered and I look forward to seeing what the next 19 bring.

Kirsty was diagnosed with ulcerative colitis in 1997 and lives Ayrshire

Check out Kirsty’s blog here

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