NHS Support

[grufflybear]

I have thought hard about whether I should exercise my concerns on this forum but I don't know where else I could go to express my concerns where others may have similar experience and understand my worry.

When I was first diagnosed I felt that my GP and nurse were probably going to be helpful if I did my part and modified lifestyle and adopted a new dietary regime. I do not take any diabetes medication but, and against their early advice, I self tested and modified my diet with great success. The basic NHS advice was a start but fine tuning using more detailed research and sharing ideas on this forum has been what has really helped me control my levels.

I got one prescription for strips and lancets, because I don't take medication I had to pay 2 prescription charges but of course that still saved part of the cost to me. I made them last 3 months by also just buying some more strips myself. When I asked for a further prescription I was told that I don't need to test more than a couple of time a week and wasn't allowed another prescrition. I am not stupid I am well aware that I do not need to test my self all the time and having established routines and foods I do like to test sometimes to check everything is ok and to be able to recognise change if if occurs so I can act on any change.

Then I had my first Hba1c.... I telephoned for the result and was told that the GP had recorded that no action was necessary because the result was normal and no further discussion was necessary. Well of course I am very pleased that it is normal but everybody esle seems to know their actual result - so why can't I ? If it is "high" in the normal range it would be useful to know, wouldn't it ? Well I was told I could make an appointment to discuss it, and my next review is due next June, which sounds more like go away and comeback next June ! So I insisted that I would like to know before then and at the moment I am waiting (still waiting) for my GP to call me by telephone to tell me if he thinks it appropriate.

SO what is the point of my rambling away on here - well firstly that testing myself has been a vital component in working out my succesful diet and now at a much reduced frequency it is helping me not worry about changes in BG levels, I am a "worrier" by nature and being able to at know what is happening is immensely helpful. Secondly I feel that I am being pushed aside, neither the GP or nurse seems to see that value to me in testing myself, and now it seems they don't see that I would like to know the Hba1c result, not be treated like an idiot on a need to know basis.

Don't get me wrong - I am very very pleased with my progress, thrilled to be fitting into slimmer clothes and thrilled to be declared "normal" at my Hba1c. I have acheived that through my own efforts and based on knowledge shared here and personal research. I have little confidence in my GP and NHS here if anything goes wrong in future.

So I thought, will it just sound like whingeing if I air this frustration here, possibly but it isn't meant to be, I think it is important for anybody finding themselves in the position I did to give themselves knowledge, find out about foods and if you can't squeeze testing kit out of your GP you are not alone but you should find the money somehow and do it. If you are not happy with the brush off from receiptionists, nurses or Doctors just keep asking questions, don't be British like me and worry about upsetting them. The NHS wont change overnight and my GP is not likely to take an interest in me overnight. When I met my specialist GP for my first diabetes appointment he told me that life wasn't worth while if I didn't have some treats in moderation and take up cycling.... yes that was it... basic general mantra that any fool could utter... and insulting to my intelligence and utterly disappointing as the first advice from my specialist GP... when I asked about carbohydrates he glazed over and I left in disgust and made my own plans.

Other people may not be as determined or confident but if one person reads this and acts to help themselves it will have been worth my while getting it off my chest.

 

[AlisonM]

I think you have some legitmate concerns and we all know the difficulties T2s have getting the kit they need to test. I would make an appointment with your doctor yourself (even a telephone appointment would do). You have the right to know what your test results are and 'normal really isn't good enough in my opinion. So, don't wait for him to call you.

 

[Barb3234]

All very valid points and well made with it! My 'support' has been barely noticeable and if it was not for coming on here and making some serious lifestyle changes I am sure I would not be doing so well.

Gp's should actively encourage folk who are prepared to help themselves, however in my GP's case , she just pointed out that 'I was unlikely to keep the effort up'! Yes, thanks for that.

Well done to you Gruffly, I think you are doing great!

 

[Caroline]

My support, what support?

I can garuntee if I go to my doctor with any concerns all I will get is a prescription of more pills.

 

[Robster65]

Your complaint is very much worthy of a post Gruffly. Its ongoing for many if not most of T2s and many T1s.

Some GPs seem to enjoy the power of withholding patient information or they believe we're all too stupid/paranoid to handle it.

It's also not allowed. If you request your results, they have to tell. Make that appointment and get the numbers. His 'normal' may be your high, and since you're being left to look after yourself, you need that figure to make your own clinical decisions.

Rob

 

[trophywench]

Gruffly, print out that NICE Guideline, the one that says that test strips are allowed to people who make use of them properly.

Also point out to your doctor that he doesn't treat your diabetes.

NO HCP can do that.

We all have to treat our own diabetes. End of story.

Yet he is getting extra money for having you on his books in the first place* (another person with a chronic condition, oh goody) and then (this one really rankles with me LOL) he gets a bonus for YOU getting an 'in range' A1c. Yet other than saying 'Here's a prescription for a bottle of insulin' in my case, and nothing in your case - he has no effect whatsoever on our damn diabetes one way or the other.

* OK (but only grudgingly) he can have some of that, the nurse has to tickle our toes etc once a year and they have to put us on the right database to get called for annual retinopathic photography, plus the database for the flu injections (if we are under 65 cos otherwise we'd be on the latter anyway).

Frankly in my own case, if I didn't get satisfaction from whatever the meeting with the GP brings, I'd change my surgery as I have a lot I can choose from. And after I'd done that I'd write to the practice manager at the old one telling em exactly why you moved ..... cc your local PALS.

 

[Blythespirit]

A very valid and well worded post Grufflybear. You have brought to our attention what appears to be a very concerning trend. I rememeber someone else recently posting that she was told her results were 'Normal' and having one heck of a time getting an actual figure. At the time I thought it was maybe an one of, but it looks like it might become a trend.

It's really not good enough. We type 2's get little information, they don't want us to have the knowledge or the tools to help ourselves and now it looks like we might not be able to get our results so that we can see how we are really doing.

I had my blood tests last Thursday and had this discussion with the nurse. Doctors say that most of us don't understand our condition and don't try to control it. the excuse given for not wanting us to self test is that ' most don't do anything with the results.' But if people aren't told what to do with then how are they supposed to know? If the docs see testing as only necessary to detect and treat hypos how is the patient to know how to test for spikes and adjust their diet accordingly?

I have always made an appointment with the Practice nurse to discuss my results ever since I was diagnosed. My request was met with huffs and puffs to start with but now it's become practice policy and most people are doing it. reading this though makes me wonder how long that will last. XXXXX

 

[grufflybear]

Many thanks for your responses, I am glad that I am not alone with these views, I am not sure what the future will bring in terms of policy reviews in NHS, they do not seem to learn as much as we do. A little more constructive response would not cost them anything, at least mine could learn not to look bored for my allocated 5 minutes once in a while !

I didn't receive a call so I am making an appointment to demand my actual test result and I wait to see how the Doctor responds face to face, and I will arm myself with the NICE info regarding testing supplies for patients who are making good use of them. I hope he will be a little more responsive if he sees that I take my condition seriously and intelligently, with the evidence of my success in front of him 🙂

 

[Robster65]

Remind him that you would have acheived nothing if you hadn't been proactive.

All of your success so far is down to your own efforts. Challenge him to share some of the credit in the future.😉

Good luck.🙂

Rob

 

[mcdonagh47]

Then I had my first Hba1c.... I telephoned for the result and was told that the GP had recorded that no action was necessary because the result was normal and no further discussion was necessary.

You are legally entitled to know the results of all medical tests carried out on you under the Freedom of Information Act. Simple as that.
There is a notice to that effect in the surgery I go to but they still try to be coy on occasion despite the notice being right next to the Receptionist's window.

 

[PattiEvans]

You might find this leaflet from NHS Diabetes useful
to print out and hand to your GP. It says:

Individuals with non-insulin treated diabetes who are motivated by SMBG activity and use the information to maximise the effect of lifestyle and medication should be encouraged to continue to monitor

Amongst other things such as recommending that staff at the practice be properly trained in the use of SMBG to support changes in lifestyle and self-adjustment of medications

 

[grufflybear]

For the sake of fairness I thought I should add to this thread. I have to say that after my initial worries I did get an appointment to see my specialist GP and he was, face to face, very helpful and pleased with my efforts and excellent Hba1c result. He also gave me a prescription for more testing supplies accepting their benefits in my situation. Perhaps he felt more enthusiasm when he could see that I have taken my diabetes seriously and by the evidence of my test result and weight loss.. who knows but I felt I should report that I feel much more positive about what to expect from him.

 

[Copepod]

Thanks for reporting back, Grufflybear - and even better to get good news 🙂

 

[Northerner]

For the sake of fairness I thought I should add to this thread. I have to say that after my initial worries I did get an appointment to see my specialist GP and he was, face to face, very helpful and pleased with my efforts and excellent Hba1c result. He also gave me a prescription for more testing supplies accepting their benefits in my situation. Perhaps he felt more enthusiasm when he could see that I have taken my diabetes seriously and by the evidence of my test result and weight loss.. who knows but I felt I should report that I feel much more positive about what to expect from him.

We often find that this is the case, that people who can show that they have taken it upon themselves to conduct systematic testing and report improved results and management of their diabetes are afforded the 'benefit of the doubt' and allowed strips (although not always, sadly, even with the evidence clearly laid out in front of them ). What is wrong though is that there must be hundreds of thousands of people being told they don't need to test, not given strips or education, and not having access to the kind of information and evidence you find on forums such as this, that testing can be very beneficial. These people will often be putting themselves at risk of complications that could be avoided were the proper tools provided from the beginning.

Maybe the problem is that many GPs are not confronted often enough, or maybe even at all, with the real life evidence that testing can really help, so they stick with the findings from statistically based conclusions of studies rather than taking account of the patient's individual preferences and capabilities in managing their diabetes.

 

[trophywench]

Well done that GP and well done Gruffly - it's hard enough getting motivated in the first place without the NHS ganging up on you!

 

[Barb3234]

Well done Gruffly, fab result all round. Just shows what can be achieved though hard work and effort.