We recently got involved in a clinical research study that researchers at Birmingham University are carrying out, looking at the transition from Child to Adult Services in the NHS.
My daughter and I were interviewed for about an hour each (separately) about everything from her diagnosis all those years ago, through the care provided by Child Services, all the way to how we thought the transition to Adult Services had been handled. The researchers will compile the results from a whole series of paired interviews – we were one of the early pairs.
It was a very interesting process; while living with coeliac disease, in our experience at least, we just get on with life, and don’t really think about or discuss CD very much. It was good to sit down with somebody and go through it all, how we manage it, and how we feel about it.
It was also surprisingly emotional – for me at least – remembering how I felt when my one-year-old switched to a gluten free diet and started eating again.
It was also interesting to think through the transition process, and to realise that my daughter didn’t, in fact, get what we were told would happen – a referral to an adult gastroenterology clinic – and that there had been some communication failures. I’m looking forward to seeing the results of the study.
Of course, as we all know, the way the NHS functions is not consistent across the country, and each coeliac’s experience is different. If you are a young person diagnosed before you were 14 and who has recently been moved from Child Services to Adult Services, the research team are still recruiting volunteers, and may be interested in hearing your story. You can find out more on the Coeliac UK site
I’ve written a book summarising what we’ve learnt over 20 years of dealing with the gluten free diet, and it might be just what you’re looking for. It packs the lessons we’ve learned into what I hope is a helpful and straightforward guidebook. It’s available on Amazon, as a paperback or for your Kindle…