To whom it may concern
Dear sir/madam
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.
Yours faithfully
anniecoops
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/
anniecoops 
Love this Anne. An insightful, thoughtful blog
I so recognise your plea. I was a DSN (until 1996) and I undertook PhD research (didn’t get it – no support) and came out with results that match your request. No one was interested and in fact they were hostile towards me in relation to changing how they work with people with diabetes and their nearest and dearest. I am not sure what needs to be done to change the culture BUT voices like yours cannot be ignored!! Will blog on my blog about your blog and pass it on to DSNs.
Great blog- couldn’t agree more. The system is too prescriptive, surely with the expert patient theory we should be able to plan our own care, using systems that work for us as individuals such as on line supplies ordering, phone support, downloads etc.
we can only keep speaking out….one day someone will hear.
Glad the CGMS is working out- well done for persevering 🙂
Great blog. I agree person centred proportionate responses such as you suggest must be our future practice in health and social care. Saves money builds resilience and capitalizes on all our gifts and resources – surely better? And people might feel better about themselves too I reckon
Thank you Anne, I wish my dad ( 82 with type one diabetes , and had a stroke at 55 … the NHS has kept him alive and we are so grateful ! ) could write his letter like yours, he would say he loves the nurses, but would love a telephone call rather than a clinic visit, he loves his GP and trusts him blindly , he was discharged from the care of the specialist diabetes team this year ( much to his dismay, he saw it as demotion!). He wants specialised contact, without the permission of his GP. As someone working with culture change as ideas gratefully recieved .
I think we should ask more what patients want rather than assuming they will want more, not less. They often just want ‘different’. I would gladly help him write his letter as he deserves to be heard and I suspect his voice would be more powerful than mine.
I’m grateful for your comments. My blog is supposed to be reflective – helping me and others to think about things in new ways or about subjects that sometimes slip by. Thank you for helping me and other readers to achieve some of this. Ax
Great blog Annie, and a direction I think we are moving towards.
From my perspective as a GP in a partnership with 12000 patients and 495 patients on our diabetic register, there is a balance to be made between individual care and an efficient, equitable service. Finding the right balance is a struggle. There are very few (about half a dozen) patients with your level of confidence and expertise at our practice. This may be because we work in a deprived, multi-ethnic population and it may also be that we don’t have enough time or expertise to teach them to become experts.
When we look at our performance we have to decide where to concentrate our efforts. We have stopped chasing QoF (improving HbA1c from 7.5 to 7.0) and decided to concentrate on our most difficult to manage patients, those numbering more than 100, whose Hb1c is >76. The effort required is enormous, many have serious mental illnesses including learning difficulties, some are housebound, some homeless, many do not speak English, many are illiterate (or barely literate) many fail (or refuse) to attend appointments.
For all these patients, and you, personalised care is essential, but must be balanced by the need to prioritise care for a population with the already very stretched resources we have. I believe that personalised care is more effective, but I know that it is usually time and resource intense, and as I am sure you appreciate, not a week goes by without another complaint that we in general practice ought to be prioritising something different.
I’m sure that personalised care will win out if we all agree that is what we want. The lesson we keep relearning is that we need to be patient-centred and this usually means ignoring the perverse financial incentives on which market-based medicine depends.
We may even have to agree that we have come to the End of the Disease Era: http://www.ncbi.nlm.nih.gov/pubmed/14749162
Jonathon Tomlinson GP Hackney
Hi Jonathan
I understand all to well your dilemma and respect your perspective. I currently use little NHS resource in terms of time really, as you say after all this time I am reasonably capable. I also think that personalised care is a high level goal. I do accept the constraints of the system.
But I do think time time is right, indeed time demands change.
I was deliberately provocative. I know that I am one of a relatively small number of patients but there are others with similar conditions. The teams in primary care are not skilled enough to deal with me (pump user) and yet I would prefer to be there rather than in a hospital setting. The downside is of course patients who have conditions for many years can spot ‘expertise’ and feel let down if they are not cared for by at least a relative specialist. I don’t think I am unique in this experience.
I do know that unless we talk and debate these things nothing will change and I want to help to make things better for now and for the future.
Anne
I have had type 1 diabetes for 36 years, I was diagnosed in the days of glass syringes, reusable needles, bovine insulin and urine tests that involved a test tube and a fizzing tablet of caustic soda. I don’t use a pump, but I do have a high dose (so high that I have no scope to increase my basal insulin other than to have another injection). No one has ever mentioned to me that my dose is high and that concerns me. (I only know it is high because I did some background reading about the DAFNE courses that are not available in my area…) I hope some of the suggestions are tongue in cheek, I would prefer there to be attitude changes rather than changing providers (like using Boots rather than my nice friendly Diabetic Specialist Nurse to monitor my feet and my prescriptions.
I sympathise with your comments about teaching people when experiencing a hypo: I train people and it is a fear of mine that I go into slow motion as my blood sugar plummets.For that reason I *choose* to have a blood sugar higher than recommended. Personalisation is about choice, isn’t it? Its a pity that I am given a choice I don’t want, but I am made to feel a failure about the choice I have made.
HbA1C. A couple of years ago I had two tests two weeks apart (one for the GP, other for the hospital consultant, same path lab) and one was “you really could do better” and the other was “very good, keep it up!”. I prefer spot tests, but since I manage my condition, they are *my* tests. There are two types of type 1 diabetes, the type that I have and manage myself, and the type my doctor thinks I have. I feel great, in fact, after a few years of feeling ill, I now feel better than I have done for a decade, but my doctor still thinks I could do better. Well I don’t, and I won’t change. My blood tests are mine and I will share what I want to. Yes I have hypos, but now I always know why (I may have spent longer digging the garden than I had anticipated). A decade ago I did lose the warning signs (it was associated with taking analogue insulin, which didn’t suit me) and I found that my doctor was bemused with the problems I was having. I changed back to human insulin and got my warning signs back. That’s personalisation: I fixed the problem, I managed my condition.
I am a safe driver and always test my blood sugar before I drive, so why should aberrant results be taken into account when my doctor certifies that I am safe to drive every three years? Those hypos are irrelevant, I wouldn’t dream of driving after digging the garden. So I keep those results to myself. I also know that sometimes my blood sugar is too high. I usually know why, and I know what to do, so why does my doctor need to know them? I won’t use telehealth solutions that remote the values to my doctor for the simple reason that until my doctor understands my diabetes those figures are of no use to him: he’s treating a different type of diabetes.
The continuous blood meter – I would love to have access to one, but I don’t think a contribution from a diabetic (me or you) is the way to do it: the contribution should be from everyone. That is what social solidarity is all about. A spot test shows a value but I don’t know if my blood sugar is going up or down or is constant, and that makes a difference in what I need to do.
Much of what I have said here comes down to my doctor (and it is not one, I have had many over the years) changing attitude: treat my diabetes, not the condition you think I have.
Thanks for your reply Annie,
What i hoped you would respond to is whether you think system change for my 20% of patients who are at highest risk of diabetic complications is the same as it is for the 0.1% who are most capable of self management.
Almost everything I have read in the last few years in health policy has been about the 0.1%, for example, extended hours, provider choice & telehealth rather than intensive, proactive human care.
Here is a blog I wrote last year about the kind of problems we have looking after someone with diabetes:
http://abetternhs.wordpress.com/2011/05/12/patients-responsiblity/
Jonathon
I think that while we continue to measure and focus in the way we do we will never understand how we could help or indeed what we need to do. Sam may have chosen what happened.
I think we do not have grown up conversations with people; just telling people what complications they may get is not an adult to adult conversation, although the content i.e. what might happen, needs to be discussed. (I’m not saying thats what you did with Sam, more reflecting back my experience) I think this is complicated not only by disease but but societal cultural behaviours that we, by accident rather than design, continue to persist. I often hear my self thinking institutionalised thought that are deeply embedded and drive my behaviour.
So, yes, responsibility is key, but how you achieve that is the really hard question. Sometimes patients don’t want responsibility. Sometimes we, HCPs, feel we are responsible. This is about people as much as it is systems. It’s about everyone, not the 20% or 0.1%.
My blog was about systems really. My frustration that nothing much (pump is exception) changed in the processes I have to follow in the 33 years. Worse, improvement is penalised through old fashioned payment systems.
I am not as experienced as you in dealing with populations or the diverse range of patients who have illnesses/conditions in the community. My blog was aimed at changing some conversations, not solving all the problems. It was about trying to add a positive voice, one with ideas, to the noise.
I think I need a new job : one where I can help to make things better, not just for me, that’s not why I’ve been blogging, but for others too!
I believe that the system should stop thinking it knows the answer and rushing off and doing things; we need more reflection and understanding. Listening is key, patient stories help understanding. I find it frustrating that the emerging evidence seems to say that, for example, education for people with diabetes is only part of the story; the skills you need to live it are different and we need other people with diabetes to help us to do, that yet all the studies I looked at turned peers into para professionals, mainly to help deliver education about the disease so again missing the point! This is about the 20%
Sam’s story made me feel sad. That could have been me.
I do not write here, or in the blog, as a policy maker. I speak as a citizen and recipient of care and services. I would like to hear more voices and have many more conversations. I don’t want to be treated ‘specially’ but I just think we can do things in new and different ways. We have to try for everyone not just the 0.1%.
That the NHS is (or is perceived to be) one thing to all people is a weakness, but also one of its greatest strengths. This is why those of us who struggle to balance the needs (& desires) of socially diverse populations are so sensitive to proposed changes that seem not to appreciate what we’re up against. I made the point here, not because you represent policy-makers, but because I know that they are reading this.
I am sorry for using your personal story to make a wider political point rather than responding to it on its own merits. As you can see from Sam’s story, many of us involved in caring for people with diabetes really struggle too.
I used to be a ‘bad’ T1 diabetic with high HbA1cs like Sam in Jonathon’s blog and now I consider myself an expert patient with HbA1cs routinely in the 6s. What I experienced when I was a patient like Sam was:
– Lots of blaming and guilting about my blood sugars from ‘care’ professionals.
– Lots of scare stories about the complications.
– Being treated like a ‘naughty’ patient.
– Zero information about HOW to change my blood sugars.
HCPs would just look at the high blood sugars and say ‘you need to adjust your insulin’ but they would never explain how. When I’d ask how to do that they would say “just increase it a bit or decrease it a bit” without any information about how to make any calculations. All I knew was that taking too much insulin could lead to a hypo which was something I greatly feared. I couldn’t afford to go hypo at work as I was in a position of responsibility.
Doctors and nurses would tell me to test more but they never once explained HOW to use the information that you get from testing your own blood sugars. HCPs didn’t mention carb-to-insulin ratios, insulin sensitivity or correction doses or any of the things I have since had to educate myself about in order to get the excellent control I currently have.
If Sam is a similar age to me (thirties) it’s likely that when he was diagnosed he too would have got a half hour demonstration on how to inject and some scary information about hypos and would have been sent on his merry way with subsequent care being a yearly ‘telling off’ for not managing the diabetes.
I’d love to know whether Sam has been offered the DAFNE programme as so few diabetics on insulin currently are. I’d love to know what kind of practical information Sam is getting from his GP about how to work with his test results and how to adjust his insulin and how to predict his response to carbs, exercise and other life events. I’d love to know what level of training Sam’s GP has had in ‘managing’ patients with T1.
In my experience since becoming a patient with excellent control, I’ve found that GPs, hospital doctors and nurses know little about carb ratios, sickness dosing, correction dosing, low carbing and appropriate dietary advice etc. I end up having to explain these things to HCPs. Something like 50% of inpatient diabetics experience an adverse event when under the care of HCPs. If the doctors and nurses don’t understand how to manage the condition, how can diabetics be expected to know?
How did things change for me? It was after joining an online forum that I started to find out about carb-ratios, low carbing, correction dosing, how to use test results, sickness dosing and recommended books like Bernstein or Scheiner. It was other expert patients who made the difference to me, not HCPs.
That’s one of the problems I have with the current provision of diabetes care from HCPs. HCPs think that THEY manage the diabetes, when in fact they should be handing over all the knowledge they can find so that the patient (who does 95% of the work) can be enabled to manage themselves. And in the case of vulnerable patients with serious mental health problems or patients with learning disabilities, it is the carers or relatives who should undergo intensive education in order to provide support.
Maybe expert patients who actually understand what it is like to live with diabetes and manage it well should be paid to mentor other patients and provide intensive training and care.
Alternatively, all insulin dependent diabetics should be given a 1-2 week intensive training programme when they are first diagnosed with subsequent update training where needed to equip them with the information they need to manage their care. I’m sure this could save money in the long run.
Thank you for sharing your story here Jojo. I recognise your story. A
Thank you Richard. Your post brought back some memories for me. I too used to boil my glass syringe in a pan in the kitchen and have been through many different types of insulin.
I also understand what you mean about how you manage your diabetes.
Thank you for sharing your story here. I hope people read these accounts and it helps them understand how it could be better. A
Great Blog Ann. You’re wasted at the DH
Superb blog – that resonates far beyond the NHS and Public Services. So many transactions are just not thought through from the point of view of the user/customer. Love it
Excellent blog and follow up comments. Jonathon, if the NHS could adopt Annie’ suggestions for those people that are knowledgable and motivated enough to manage themselves for most of the time it would free up specialist’s time to support / educate that aren’t at that level yet
The highs and lows of being a patient | anniecoops
Thanks for sharring your thoughts about What helps diabetes.
Regards