Tuesday, November 13, 2012

The utopian world of Type 1 Diabetes

14th November 2012. World Diabetes Day is upon us. 

So what is this? Another day where we pay lip service to improving diabetes care...or genuinely an opportunity for change.....that is the million dollar question,isn't it? Type 1 diabetes care is my passion so seeing all the initiatives being launched this week by the Diabetes Consultant organisation,ABCD and patient organisation, Diabetes UK, have been very encouraging to say the least.
Finally, there seems to be a recognition that not "all diabetes are the same", a realisation that interventions directed at Type 2 diabetes, in essence a public health failing, does not work in Type 1 diabetes, a pathology over which the patient concerned has no control..perhaps even a coming together of organisations to find the group of people buried under the sheer weight and magnitude of Type 2 diabetes. the group of people who have been called the "lost tribe"...not sure I have seen anywhere patients asking for a debate as to whether primary or secondary care is "better placed" to look after them...

It also set me thinking, prompted by one of the people I have met on Twitter....she asked me to write a blog about "anything to do with diabetes"...and it gave me the opportunity to dream. For a few moments, forgetting the politics, the challenges of finances within the NHS, forgetting the hypocrisy of the world we live in, the political correctness which stops us from challenging colleagues when poor care for Type 1 diabetes is provided...for a brief momentum I ventured into the world of utopia where money and politics didn't exist.

The question I had in my mind was very simple...in this utopian world, how would I provide Type 1 diabetes care for patients as a hospital specialist? So I threw that question out into the twittersphere...and it was fascinating to read the responses...and I came up with what I would like this ideal Type 1 diabetes service would look like.

For starters, no assumptions would be allowed...no assumption that primary care wasn't equipped, no assumption that all the patients wanted to be seen by specialists, no assumption that specialists knew best. I would love to have a system whereby patients can choose their own doctors, GP or specialist..in short, someone who provides good care, an empathetic ear, someone who doesn't pre-judge or treat them as a "number".

I would like all patients to have access to specialists on demand ergo use virtual method ( email, social media, texts) to contact specialist nurse or doctors when they have problems. I would like them to have the ability to self refer themselves into a centre if they were worried, and access to educational drop in programmes on topics which are relevant to them according to their age group..it maybe something as simple as "growing up"., or as "complicated" as "what to do at music festivals". I would also like these patients to feel their GP is trained and educated in Type 1 diabetes and if not, then the patient has the right to move GPs or self refer to the specialists! Beyond ordinary clinic set ups giving access to dieticians, nurse specialists and doctors, there would be access to psychology support,access to pump services...as and when needed or asked by the patient. Pre-appointment, each patient can choose the topic they want to talk about....if it wasn't about "hba1c levels", so be it..if it was about talking just about "alcohol and night-outs...why not?

In this utopian world, the would be no silly debates whether a Type 1 diabetes patient can have blood sugar strips and indeed, they can choose whatever meter suits them best. If due to any reason they come into a hospital,they will always have a specialist team seeing them within 30 minutes, if not less, have a dedicated ward for patients with Type 1 diabetes and oh yes, a service which runs 7 days a week, not 5 days.
Each admission to hospital would be reviewed by the specialist team internally to assess whether it could have been prevented...and whether the patient was appropriately treated by all healthcare professionals within the hospital.Specialist teams would also work with local schools, universities and councils to raise the profile of type 1 diabetes, improve awareness and education....

Am sure have missed out lots, but for starters that will do. So...possible or just fantasy? As someone who has been dealing with NHS finances and have got a reasonable service in place....there are some bits here which needs negotiation...but you know what...the amazing thing is...the majority of those is do-able.....yes..absolutely do-able.

We profess to have service which listens to patients..I would challenge that concept. Robert Tattersall once said.." It is very easy to manage diabetes...badly". We seem to have chosen the easy way out...is utopia actually achievable? is it simply about money? I would venture to say it probably isn't...much of it is also due to attitudes, cynicism and the resistance to doing things..differently.
But talk is cheap...it's easy to fantasise and put down in a blog concepts of fantasy...is that what I hear you say? So here goes....today on World Diabetes Day, I promise anyone with Type 1 diabetes this. I can't change the system in this country overnight but certainly can make things happen where I am. 
I look forward to the next World Diabetes Day...as I intend to turn around and say...it wasn't a fantasy, it wasn't utopia I was describing...its reality...and it happens in Portsmouth Hospitals NHS Trust

Happy World Diabetes Day folks. This coming year..it will be different. I promise you that :-)


  1. Goosebump stuff. You, Dr Partha Karr, is what the world of diabetes needs more of!

    Thank you.

  2. As an intelligent woman, a dynamic professional and an I dependant adult I want to be treated as you describe I am more than my HbA1c I want more than lectures unreasonable lectures I want my diabetes to be understood in the context of me my life my husbands back injury, my young family my difficult full time job, my desire to care for everyone else first before me. I want advice about how to deal with the emotional ups and downs. Putting me in a clinic with older people doesn't encourage me it depresses me, I need you to look beyond the numbers I want to engage but in my terms via blogs, twitter, email these I can do at 3am when I wake worrying I don't need an. Immediate reply but I need to be able to ask the question before life gets in the way. I don't like breakfast, I get food wrong I get my diabetes wrong and occasionally I ignore iti know that's wrong but sometimes it's easier. I don't need to always have to explain to my GP every visit what the pump is what my regime is.

    Rant over utopia is but a trial away if we don't dream we don't achieve. Keep it going.......

    1. Very VERY helpful...watch this space...can't ask anyone else to change ...unless have got my own backyard sorted.
      So..on the case!

  3. For the last 30 years I have been living in Belgium with type 1 diabetes. The treatment I experienced there was not that far from your vision of "utopia", although it was just standard. During my time there I had tests quarterly and yearly followed by a twenty minute appointment every 3 months with a specialist diabetic doctor. I had the same doctor for each appointment so a strong relationship developed. I could also SMS, email or phone the doctor if I had questions. This type of management allowed me to hold down a demanding job involving frequent travel often to some remote parts of the world. This care plus the insulin, strips, testing meters etc are delivered as part of the Belgium health service and as a consequence I have had no complications. Having moved back to the UK I was surprised to be told, at the hospital, that the only way I could see a specialist would be to develop a complication. I now have to get treatment though my local surgery where they have no specialists and where the tests are very basic. For the first time for years I am feeling rather vulnerable..