Diabetes Dialogue

In my experience, there seems to be a conflict between options for care under the NHS for diabetes suffers. My husband was diagnosed with type 2 diabetes approximately 3 years ago but initially his care under our GP was little more than an occasional blood test, despite have coronary heart disease and waiting for by pass surgery. Only in the last 18 months has he been referred to the local hospital diabetic clinic where the standard of care has improved considerably as a "team" approach is taken. He now has to inject insulin 5 times a day and has a number of common complications but he has one point of contact - his diabetic consultant - who makes appropriate referrals to other professionals.

Now however our GP wishes to take back responsibility for his care despite the hospital consultant's advice and my husband has been put under pressure to attend their "clinics" instead of his regular hospital appointments. Tests are now being duplicated with those performed at the hospital (expensive for all concerned!)and he is being given conflicting advice about medication.

We presume the conflict has arisen because of funding availability between the GP service and the hospital and we assume the GP receives payment for offering such services, but as the patient in the middle, my husband's care is compromised. There needs to be an established protocol for the way in which care is delivered for patients.

I downloaded the pdf and had a good read, its quite good in parts,trouble is its about as much use as a teacup made out of chocolate.
You might just as easily sit down and write on a piece of paper;
" As from tomorrow there will be no wars,no poverty, no sickness or disease" and think that you have solved all the main problems in the world.......

Before you put together something like the NSF, go and talk to the people it really affects, I mean of course us Diabetics, have a read of the newsgroups(NGs) and go into the internet Chatrooms and talk to real people about the problems they have had with GPs, Nurses and Dieticians, then you might be able to put together something that will actually benefit us.

I am not saying that there are no success stories out there, there are, but there are a lot of really bad ones, like the gentleman that went to his GP because he wasn't feeling good, his GP said that he had a mild dose of Diabetes, should cut out sugar from his diet and if he didnt feel better in a month or so to go back to him.

There are other "horror" stories but that one from couple of years ago always sticks in my mind...


The NHS should do a lot more for Diabetics, but it's no good putting together something such as the NSF without sorting out the "Specialists" that in a lot of cases fall anywhere between Naive to downright incompetent.

Based on the diabetes care received by both myself and my husband I would say that what is on offer in this county of Gloucestershire is rather like the curate's egg i.e. good in parts! The best I can say,based on some 12 years experience,is that it is adequate. However, I would qualify that remark by saying that it is only adequate if you are someone who is prepared to buy and read books written by doctors who specialise in diabetes. That you join the excellent organisation Diabetes UK and that you are not afraid to question, argue and disagree with what your General Practitioner and his nurses say. GP's very often make the most amazingly stupid remarks with regard to diabetes - so much so that you can hardly believe that you have heard correctly. If you are someone who believes and accepts everything your doctor tells you then all I can say is "Heaven help you!!"

I'm seriously worried about the quality of service and level of advice given to Diabetics through the NHS.
I am 32 weeks pregnant, and 3 weeks ago a routine check found glucose in my urine. This was confirmed a week later, and given that I have a strong family history of diabetes, I was referred by my midwife for a Glucose Tolerance Test. This took place on Tuesday. Unfortunately, on Wednesday when I phoned to get the results I was told that they hadn't adequately labelled the 2 necessary blood samples (1 fasting, 1 glucose loaded) so they couldn't give a diagnosis. I have to go back again next week to repeat the test.
Obviously, this is irritating from a personal point of view (not to mention upsetting being held in limbo for a month on the subject) but I can't help feeling that, as a potentially fatal complication of pregnancy, it is being treated in a frighteningly cavalier manner.
It will be 4 weeks between the first suspicion of diabetes and a conclusive diagnosis (I hope). I have not been offered:
- any counselling whatsoever
- any dietary/health advice -
both which I should have received according to the World Health Organisation's best-practice guidelines on diabetes. Something as simple as being given dietary information could help me to protect my unborn child and myself from the difficulties that gestational diabetes can bring (coma and death, for example) without harming me if it turns out that I don't have diabetes.
I can't believe that there aren't better guidelines for our health professionals in the UK, and I can't believe the casual manner in which this is being handled.

My perspective is as a hospital consultant.

I have spent five years of frustration at inadequate funding and resources. In the first three years, it was made clear that no funding would be forthcoming pending the NSF, which has only made the subsequent failure to address targets or needs over the last two years even more frustrating. Nationally and locally there is a shortage of trained individuals - we have been a consultant short for over two years (and that in a 2 consultant unit) and can't fill a paediatric DSN post.

Despite this we have managed to establich DAFNE and type 2 education, albeit at an inadequate rate, convert to digital retinal screening and see a generalised improvement in primary care services. The rub is that it's mostly been done on the basis of individuals changing their practice and working in their own time. We have attracted central funding and commercial sponsorship but when that pump priming funding is expended we have had to fight tooth and nail with the PCT Commissioners even to get partial funding to carry on. No new funding has originated locally and as the PCTs have got wise to the pump priming route they are now actively blocking our take up of such funds by indicating that they are unwilling to committ to ongoing funding - of anything.

I do not believe that at that important PCT commissioning level there is an understanding of what the is involved in meeting the NSF targets. Indeed from comments passed I know this to be so. The patients, their carers and the junior levels of management are converted and nationally the Govt has had the foresight to establish the NSF and Sue Roberts' team. But at the Regional meeting held to launch the NSF the most striking fact was that although it was well attended by the service providers and the strategic planners the PCT boards/commissioners were absent. Locally, this was through choice rather than lack of awareness.

However, the funding decisions are made at PCT level and the savings from improved wellbeing, less sickness etc. will be seen at the level of Government spending in the form of more tax revenue and a smaller social security bill. The PCTs don't feel that they will see the savings and therefore see no need to foot the bill.

Locally, we perceive a complete lack of engagement or interest in other than ticking boxes at lowest cost. eg. although DAFNE works it would be preferable to create a minimal cheap intervention that allows us to say we provide education and if it doesn't produce the same, or indeed any, gain for the patient then that is but a minor consideration. From their viewpoint its understandable, just.

In practice, we have less funding, staffing and resources than we did at the start of the NSF process, no true engagement on the part of those that make the funding decisions and therefore target dates come and go without any significant progress.

The NSF is simply not seen as a must do by those that have the money. Furthermore, they don't understand the ramifications and requirements, and in some cases actively profess the belief that meeting the retinal screening targets and ensuring that each GP practice has a stand alone list of patient's names is all that is required to meet the 10 year plan. Nor do they seem to believe that they will be subject to any meaningful inspection or censure. So far they have been correct in that judgement.

These factors are simply beyond our control at a service level. There is no local centralised decision making body for us to deal with, nor does either PCT perceive a need. As a result, the PCTs follow their own funding priorities so that even when we do win on the commissioning lottery we finish up with the money to appoint half of two thirds of a dietitian or something equally absurd.

I don't expect the earth, although our local estimate is that if the number of patients increases as expected we will need double the resources in time and people across primary and secondary care by the end of the 10 year plan. What I do want to see is some sensible medium term planning of a good, fair, locally inclusive service.

Without political pressure, in its widest sense, to make this happen we will continue as we are, sitting on the starting line and waiting to throw a six.

The only consolation from browsing this website is that we are clearly not alone.

As a GP lead and GPSI for a PCT I work closely with local hospital colleagues. We have carefully undertaken baseline assessments and identified that as expected there is still a significant lack of resources for the delivery of good integrated diabetes care. The NSF has been beneficial in focussing the mind for all involved in delivering care it has really only re-inforced what has been known for sometime.

In our locality there is still a shortage of doctors both GPs and hospital consultants with an interest let alone specialised training in diabetes. Practice nurses work hard and are well trained to help with the delivery of care but in key areas there are still shortages of trained nurses. We have formed a community diabetes team for adults but it will only have a very limited impact in the light of the increasing demand. The PCT is trying to link with the local Children's hospital to establish locality based clinics for children with diabetes. This has identified other significant resource shortages which are likely to be more difficult to overcome especially the staff shortages across the board.

We continue to try to build on patient education pathways but this requires resources for leaflets and educational tools that are readily available.

The problem as I see it is that the only ring fenced money for diabetes care is for eye screening for which we are grateful. This covers hardware costs it does not cover full running costs. Within the local SHA community al of the PCTs realise that the NSF target is more than just having a practiced based register in order to offer appontments. The PCTs are working with the SHA to deliver a robust digital eyescreening service with a regularly updated database for call/recall purposes. The staffing costs together with all other aspects of diabetes care has to be balanced against other demands in the LDP. At present we have been fortunate and hope to have the funds to cover this service.

Further development is limited by the lack of an integrated care record similar to the system used in Dundee to prevent duplication of tests and hopefully save time and resources all around. Unfortunately this sort of technology may not be available until 2008. We feel that this will slow the development of an integrated diabetes service which covers primary and secondary care with an additional community based team. We appreciate that we may not be able to offer a seamless system but in consultation with hospital colleagues would like to develop a managed care pathway. We are grateful for the pump priming initiative for the first year but it does not help with the on-going costs for an experienced manager to integrate such a care pathway for a large acute trust and its catchment area.

We have looked at using present resources more efficiently but are still of the opinion that diabetes care is under resourced in terms of money, manpower and IT. In the meantime we continue to try to deliver patient centred care that meets the latest targets.

The announcements of which you speak seem to be nothing more than the same old, same old. Words and words only. Nothing is ever done to actually improve the lot of diabetics. (I hate the term "People living with diabetes" with a passion)

Maybe you could help point us to where we can see how the national standards have provided inspiration to those within the NHS?

As for developing a true partnership between the diabetic and the "care team", that would (presumably) require some form on continuation of care where we diabetics actually see the same consultant at clinic more than the one time? I rarely if ever see the same consultant twice and most of the time at each consultation is spent going over the same points of my history as the last time (and the times before that)

On top of that, at each "consultation", the following consultation is discussed where the results of various tests will be brought under the microscope. These tests are done when? In 18 years, I've had TWO retinal examinations and ONE visit with the podiatrist. We're TOLD that we'll get appointments through the post, but they never arrive, so the next clinic visit results in nothing more that a regurgitation of the last one with more promises of appointments that never happen.

Another point about "care" is that lots of diabetics are more than happy to self test and make decisions as to what we eat or do, based on the results of these tests, but more and more of us are being denied the test strips due to "financial restraints". Seems to me that spending a little on preventative care now is a far better idea than spending lots on treating complications sometime in the future. As a diabetic of close on 18 years with no complications, I'd like to keep it that way, but increasingly it gets more difficult.

Just a few thoughts.

Kev (aka Beav)

Good diabetic care is possible but requires teamwork. I worked in the community while Sue Roberts ran the local service and provided the support and education we needed. Patients are the ones who live with the condition and must be equal partners in decision making. Although good care is costly poor care is even more so.

This "tell parliament" has produced a lot of the usual case history stuff too detailed to be of interest to Parliament. The big issues where Government investment could bring huge savings in the longer term are:

1) Fund research re beta-cell prosthesis/replacement, it is not in the interest of the drugs companies to do this so they won't. Huge savings to be made.

2) Research genetic councelling for all diabetics so there are fewer afflicted in later generations not galloping more as now.