Lizzy Buchan: IBD must be taken seriously by health boards

Talking about the ins and outs of the digestive system is never going to be an easy thing to do.

Inflammatory bowel disease affects thousands of Scots. Picture: PA
Inflammatory bowel disease affects thousands of Scots. Picture: PA

Unfortunately as Scotland holds the dubious honour of having the highest incidence of inflammatory bowel disease (IBD) in the UK, it is clear this is a subject that deserves attention.

More than 26,000 people in Scotland are living with conditions such as Crohn’s disease and ulcerative colitis, with Scottish researchers crediting a lack of vitamin D or a poor diet for the high numbers.

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The number of Scottish children with IBD has also risen by an astonishing 76 per cent since the 1990s.

The reality is that these people will have to live with agonising stomach pain, diarrhoea and extreme fatigue, which is likely to affect their jobs and every aspect of their personal lives.

They are also likely to require surgery and consistent follow-up care for the rest of their lives, as IBD is currently incurable and treatment options are limited.

These repeated hospital visits and regular treatments rack up an estimated £72 million each year for NHS Scotland and the lifetime costs are similar in scope to more well known conditions like cancer and diabetes.

I have watched a loved one shed drastic amounts of weight and exist on nothing but rice and rice cakes because everything else she eats causes an excruciating flare up.

It is a miserable and lonely situation to be in, compounded by the fact that there is very little wider understanding of these conditions.

Therefore it was very encouraging to see the Scottish Government is leading the way by coming up with a set of UK-first blueprints to make sure these patients get better care.

Teleconsultations, better provision of dedicated nurses, and improved access to psychological support and dieticians make up part of this picture.

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All of these things are so simple but have been proven to make a significant difference to people’s lives, as well as to the public purse.

One ulcerative colitis patient from Ayrshire told me last week that she was often admitted to A&E with a flare up then, after a lengthy wait, sent to a ward which had no link to her consultant or her IBD nurse.

She would then have to wait 24 to 48 hours to be transferred to the right ward where she can finally get the care she needs.

Access to specialist nurses, dieticians and psychological support is also patchy, yet dedicated IBD nurses can reduce hospital visits by 38 per cent and reduce costly inpatient stays by a fifth, the research group behind the blueprint found.

Psychological support should be offered to patients as standard practice, as many will need support to deal with major impact of an IBD diagnosis.

Dr Ian Arnott, a consultant gastroenterologist for NHS Lothian, told the launch event last week that this should be about “a return to normality rather than normalising a poor quality of life”.

I couldn’t agree more.

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More and more people are living with chronic conditions and there are many simple things that can be done to drastically improve their quality of life.

Gregor Smith, Scotland’s deputy chief medical officer, even suggested this blueprint could inform care for other chronic conditions.

Now it is up to the individual health boards to act decisively to ensure better care for this under-represented patient group.