To whom it may concern
I’ve been thinking about writing to you for a while but not really had the confidence. You see I am really grateful; I do understand that my staying well (indeed alive) really depends on the NHS but I just thought it might be time to share with you my thoughts about how we could meet both our needs; meeting my wishes for positive living, good health, and independence and for you being more efficient (I know we are all short of cash).
You see I don’t really want to come to hospital or clinic to see you, it wastes my time and yours and let’s face it time is money for both of us. I know I need to come sometimes but more often than not I really don’t need to and surely I could discuss that with you in an email? I can send you some results if you like; they are all programmed in my pump and the internet means I can send you the whole lot. You would just need to log-on. Please don’t say that Information Governance won’t let you. Just send Mr or Mrs IG to me and I’ll be sure to tell them it’s my information and I can send it to whom I like – I’ll even sign something if they need more paperwork.
If you need to check my feet surely I can pop into Boots when I pick up my insulin? I’m sure they could be trained to do it, that way its only one trip. I’m thinking that coming to the hospital just for someone to test my feet with a filament is a bit of overkill. They will need a ‘feet check’ area in Boots though; I refuse to take my tights off near the Clarins counter, what if I hadn’t had my pedicure?
Talking of prescriptions, well that’s a bit of a sore point, but why can’t I just order them online and the pharmacist can monitor my use and give me advice? It’s not like I’ve got a bad track record of compliance, I just don’t seem to get any concessions for good behaviour. Recently you reduced the medicines I get from two months supply to one. That’s 6 more trips a year, and all the paperwork that goes with that. Going to the pharmacist is the one physical thing I have to do, collecting medication, so I need to try to get the best out of the trip, hence the foot check suggestion.
Now blood tests, HbA1c, I’m sure I’ve read somewhere that you can do this by finger-prick test and send the test in the mail. If this is true it would save me a lot of time and you wouldn’t need to have those nice phlebotomists taking blood from my arm. At the moment I have to go to the hospital to have this done as it’s more convenient that waiting weeks for a sample to be taken at the GP. I just sort of thought it might save some money, it would certainly save my petrol and car parking charges (that’s if I can find a space). If these tests are not as accurate and are expensive perhaps it might be worth trying to resolve this – wouldn’t it save money (and petrol) in the long run?
I would also (I’m quaking as I suggest this) would like to have a slightly better balanced relationship with you all. After all (I’m touching wood now) I’ve always tried to be a good person with diabetes and have managed to stay out of hospital for 33 years. The suggestion that I need a ‘care plan’ is sort of helpful but a bit patronising too. I suspect it’s a language thing but sometimes my goal might be ‘more of the same’ or ‘I’m Ok as I am, thank you’ but the word ‘goal’ somehow implies I need to do better…… better than what?
A better HbA1c? Now it’s not all about this. I know that’s how you measure things but you see I just don’t want to go hypo at work, or at night, or pretty much anytime really. So sometimes I feel the pressure is on to keep my blood glucose low. I try, I really do, but it’s not always that easy. Have you ever gone hypo when presenting to 30 nurses – my mouth sort of doesn’t do the right thing, I lose the power of coherent speech – I do try to stop this happening even if it means going a bit higher than I would ideally like. If I’m really tired and have a severe hypo at night I don’t wake up and then fit. It hasn’t happened for years now but I really would like it never to happen again if there is any way to avoid it, so low is not always great.
I accept that I need to see you sometimes but I also think I know what to do and can ask for help remotely when I need it. I also know I might need more help one day; if I do can I not come for fewer appointments now, while I’m well, and save them up for later, when I might need them?
Finally, this is a special request, this Continuous Glucose Monitor I have on loan is marvellous. Could I borrow one maybe one week each year? If it’s too expensive I’m happy to pay a modest contribution, especially if that helps some people who can’t do that themselves. A good understanding of what’s happening is really helping, now this might help with the HbA1c stuff too (I really do understand this is important).
So, I hope you read my letter in the spirit it is intended. I do respect and like you very much but I could do with not seeing quite so much of you, in the nicest possible way. I’m sorry for any inconvenience I may cause.
Person with type 1 diabetes for 33 years
This letter is written slightly tongue in cheek and I recognise that I may not want the same as many other people. The point I’m trying to make is that care of people with diabetes is cited as being approximately 10% of the healthcare spend in the UK (Diabetes UK State of the Nation Report 2012 http://www.diabetes.org.uk/Documents/Reports/State-of-the-Nation-2012.pdf) although the report doesn’t separate out Type 1 and Type 2 diabetes. Any efficiencies we can make surely will help? At the moment I have such limited choices – clinic visit or nothing much really. The payment system is also perverse, apparently if my Diabetes Nurse phones me for a consultation they don’t get any payment; which is surely wrong, perhaps it should be less than a standard clinic visit but she is offering a service, a highly efficient one at that.
I remain, however, an optimist. The Year of Care Programme is designed to do what I’m describing but seems to be taking such a long time to come into my life. I first heard of this in around 2004 and the final report was issued last year, 2011. Meanwhile I’m still using expensive unnecessary clinic visits. I do have an issue with some of the language in the report, as I said in my letter, ‘care planning’ or more ‘goals’ for me is a pejorative term but I can live with that if it improves things. I hope the options list, however, is more creative than the list in the report; surely people with diabetes will have their own ideas about what will help them. If it’s still a list of fixed services and people with diabetes can’t influence what they are, we are no further forward. I haven’t been particulalrly creative in the way I describe what I would like – I’m sure that there are more ways to do this!
Nevertheless, I recommend the report to you all. It’s about system change at scale. It will demand new ways of working and new relationships – the sooner we get on with it the better.
The full report can be found here: http://www.diabetes.nhs.uk/year_of_care/year_of_care_resources/