I am Doctor Jacqueline Anne Allan and I am a type 1 Diabetic. 10 years ago I set up a charity to deal with the issue of Type 1 Diabetes Related Eating Disorders (T1ED) and/ or Diabulimia called DWED or Diabetics with Eating Disorders and since then I have been a patient advocate, completed a PhD in the subject and commenced clinical psychology training
Firstly I would like to thank the following people without whom I would not be here to explain why despite recent innovations, T1ED is still woefully under researched, under treated, under recognised and misunderstood
DWED as a charity would have been unable to function without the generosity of Stuart Wright our accountant, John Allan my father and Claire Kearns my right hand woman. Also the endorsement of our trustees has opened many doors so I would also like to thank them and the countless number of volunteers that have given up their time and energy to promote our agenda. Furthermore I would like congratulate Sir George Howarth, on his recent Knighthood, and to thank him for always giving a small charity a big voice.
As I said there have been recent advancements in the Field of Type 1 Related Eating Disorders; updated NICE guidelines, new research projects and Media events have all helped consolidate DWEDs vision. And it’s a simple one, whereby a patient suffering with Diabulimia/ T1ED can be diagnosed with an illness they actually have, treated in a timely fashion, with specialised treatment and perhaps most importantly with the respect and dignity that they deserve.
When the charity started this seemed like an impossibly optimistic dream, it was 2008 and one of my friends had just died on an inpatient eating disorder ward, surrounded by doctors who didn’t know what they were looking at. I was angry and I couldn’t bear to witness one more senseless death without knowing that I was at least trying to do something about it. At first it was a real fight, trying to explain that this wasn’t AN or BN or Binge Eating but actually a mental illness within its own right, with Type 1 Diabetes specific etiological factors, accompanied by very specific and more frustratingly obvious behaviours which in any other circumstance would have proved a differential diagnoses.
We were dying and I had to convince HCPs that this was not something that was ‘made up on the internet’, we were dying and I had to convince HCPs to focus on fear of insulin instead of food, we were dying and I had to convince HCPs that the extolled measurement of bmi was pretty much irrelevant to us. We were dying and I had to convince the NHS and many other bodies that should have known better, that this was a crisis, no a scandal.
And so we clawed our way to where we are now, but many had to die for this issue to be taken seriously. They were causalities in a war against ignorance, and it is my deepest regret that among them were DWED volunteers who unfortunately will not be able to benefit from the very changes that they fought for.
So of course I welcome, the recognition of NHS England in the form of funded pilot projects. Although I’m not entirely familiar with the team at Bournemouth, I couldn’t think of another service which will squeeze every penny out of the funding better than Kings. That is mostly due to the dedication of the staff who have gone above and beyond to provide a service that is illness specific. Thank you, as with any service, nothing is perfect, but the fact you even exist is validating and hopeful for so many sufferers.
But squeeze every penny they will need to.
I had a client who within one year was admitted to A & E 90 times, was sectioned and detained on an inpatient mental health ward and the sent to a ‘specialist’ private treatment center that claimed, I would argue, falsely, that they had expertise dealing with this issue at a charge (to the NHS) of nearly £1000 per day. They did not. She was turfed out and left to fend for herself after less than a week. This is not an uncommon occurrence. We estimated this specific patients costs to the NHS over 12 months as being around £250K.
One Patient, One year and that was without retinopathy or nephropathy or any of the myriad of expensive complications that usually blight us.
And yet the pilot got less than 300K in running costs
Or 2 patients being paid for by the NHS for less than 6 months in private beds being treated for an illness that they don’t have leading to inevitable relapse and a waste of everyone’s time and the NHS’s money.It’s not nearly enough and it is absolutely not reflective of the catastrophic cost of this illness. Yes to me it’s personal, it’s my dead friends and the reason I have got out of bed every morning for the last decade, but also it just doesn’t make any kind of financial sense. We all know how much trouble the NHS is in so why are we allowing this to continue. As a trainee clinical psychologist this is boggling me, trust me when you’re paying nearly a grand a day for 1 patient to be treated, we are CHEAP, 10 of us are cheap. 100 of us are cheap. In this situation, even specialist psychiatrists are cheap.
And there are some easy wins here, please let me outline what I think the main 3 are
1) Define a new taxonomy for Eating Disorders in Type 1 Diabetes that reflect diabetes specific aetiology and diabetes specific behaviours such as insulin omission and separate them from standard eating disorders. We don’t know what the death rate is, we don’t even know what the true prevalence is because the instruments that are used were not created with us in mind. And as much as there is debate currently surrounding the stigma attached to diagnoses, try moving through the world without one, you can’t treat what you can’t diagnose,. At this stage I don’t care what we call it but it is not AN, BN or Binge Eating Disorder,
2) Specialist services must be supported and by supported I mean funded, we are literally dying on waiting lists.
3) Research which heavily includes service users must be prioritised. The reasons that there are so many misconceptions about us is that we were excluded from research about us.