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Type 2 When the NHS kick you whilst your down! Do they really want Diabetics to help themselve?

Pinkorchid said:
But why assume he needs help with his diet when he is only talking about the trial he wanted to join I can understand why he was annoyed
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Because he's asking about an extreme diet.. why should we not suggest an alternative that may have even more benefits? Especially as many more have tried the alternative with significant degrees of success?
 
Non dietary advice has been given. My own take is that the OP could try lobbying his MP and/or his local CCG withe the proviso not to hold his breath. Alternatively to try a different approach, perhaps a different dietary approach? This advice has also been given, I do not see the problem there.

Edited to add.

Or he could choose to go private.
 
Or he could chose to do the diet of his choice alone like many of us have.... some less successfully than others.
 
rafkid said:
The Nesquick option was given by a dietician consultant who specialises in diabetes...which I presume you are not, also I find your tone rather patronising and to be honest you know nothing about me or my journey so I would apoappreciit if you didn't comment further in my post. Unless you have something tangible to share with us.
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Well - I worked on the formulation of the Cambridge diet in the research lab at the Symingtons' R & D department in Market Harborough in the 1970s where the sachets for the hospital trials were developed.
Tangible enough?
 
rafkid said:
Having recently read in the press and seen in the media that the NHS had finally woke up and smelt the coffee with regards to diet for type 2 diabetics and in particular the trail on 'shake diets' I contacted my GP practice diabetic nurse to enquire how to go about volunteering for the trail. She spoke to a GP who then wrote to the local hospital Dietican Dept and subsquently an appointment was recieved to attend the clinc. Great I thought, this could be the answer that I have ben waiting for after years of struggling with various attempted diets...and failing! I then had an appointment with my GP diabetes nurse who was all excited about one of her patients being so proactive and willing to try to to resolve the issue in such a dramatic way. This would also have the benefit of the surgery looking at alternative treatment to help like minded diabetics....and save the NHS money in the long run from not having to treat / care for me with the obvious known complications that may happen in later life without getting it under control....or at the least delaying this expensive treatment / care as long as possible.
So I attend my clinic appointment and I was told that the trail was a bit of a post code lottery in that they were targeting specific areas of which I was not living in one! And that as the trial was controlled from somewhere outside my NHS Trust there was no way they could get me on it! However not all was lost - impressed at my proactive and enthusiasm to do something, and something so radical and dramatic they agreed to look at coming up with an alternative strategy. They felt it would be wrong as clinicians and possibly morally not to harness my enthusiasm even with the disappointment to not being able to get on the trail. However due to under resourcing the hospital would not be able to give me the monotiring support and would be asking the GP to provide that and any cost for the diet shakes.
I then went back to my GP dietbetes nurse and she was all supportive and said that the funding shouldn't be a problem as the benefits to both me and the NHS if successful far outway any costs. Good news!
A week later a letter arrives from the hospital with my diet plan and what support is required from the GP practice.
Basically I was not going to be on any expensive medical grade food shake suppliment as it was felt that as it was only for a short period of time (4 - 6 weeks) I wouldn't need it. So I was put onto a diet consisting of Nesquick and multivitamins! Yes thats right Nesquick and Multivitamins. No problem I can buy that myself which I dutyfully did. Support from the GP practice was nothing more than monotiring weekly my blood pressure, my weight, my blood sugar levels and medication. I was to stop all blood pressure medication and metformin before commencing so that a base line of results could be accurate without drug effects and this would give accurate weekly readings as to how the 'treatment' was working and more importantly identify any issues that could effect me in a negative way! All makes total sense, all looks positive!
Jump forward to a week after recieving the letter (which had also been sent to the GP who referred me and my nurse) and still no contact from my surgery to tell me they were onboard with it and to stop taking my medications. I would never stop medication unless I was told to do so by a medical professional!
Today I had a blood pressure appt with my diabetic nurse and was expecting to have all the relevant pre diet checks as above done and discuss in more detail the start of the treatment. However it turns ot that the surgery will not be supporting me due to the cost!...***! Talk about backward thinking! Unsupportive! Reactive treatment only! Lack of foresight! Total lack of patient understanding and patient care! No wonder the NHS is in the absolute dire state it is with people like this both running it and 'working' in it!
Even after asking what the cost was, considering I was purchasing the Nesquick myself and the multivitamins myself! All they had to do was to give me a less time than normal weekly appt to measure blood pressure, weight and do a blood glucose blood test. The whole situation beggars belief! It really does. Just who are we letting run this corrupt, inept and quite frankly inadaquate institution! This is our TAX money, public money and we are leting complete idiots run it!
Does anyone know off hand how much a HbA1C cost the NHS? How much a 5 minute appt with a practice nurse costs? I need to formulate my response to the surgery in my complaint and to be armed with some accurate figures wiuld greatly help.
Many thanks in advance for any replies
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Hi
When writing to your surgery I would head to Diabetes.org.uk for more stats on the Direct research which they funded. Your surgery will have strict protocols on the treatment of type 2 s e.g. no test strips unless you are on insulin and a restriction on the frequency of the HBA1c tests. These are listed in the NICE guidelines. I think it also says there that type 2's should be given a personalised approach:
https://www.nice.org.uk/guidance/ng28/chapter/1-Recommendations#individualised-care
1.1 Individualised care
1.1.1Adopt an individualised approach to diabetes care that is tailored to the needs and circumstances of adults with type 2 diabetes, taking into account their personal preferences, comorbidities, risks from polypharmacy, and their ability to benefit from long‑term interventions because of reduced life expectancy. Such an approach is especially important in the context of multimorbidity. Reassess the person's needs and circumstances at each review and think about whether to stop any medicines that are not effective. [new 2015]

I hope you can find some kind of compromise with your surgery in spite of your frustration as you still need them on side. I believe the Direct trials are being rolled out now (possibly in the South West). Not sure where you are but after this 3rd round of widespread trials I would expect it to be rolled out nationally.
In the meantime do you have any other options to improve things solo?
 
Perhaps @rafkid could update us with how he would like to progress to help us frame our suggestions at this point, given that a variety of options have been proposed
 
NicoleC1971 said:
Hi
When writing to your surgery I would head to Diabetes.org.uk for more stats on the Direct research which they funded. Your surgery will have strict protocols on the treatment of type 2 s e.g. no test strips unless you are on insulin and a restriction on the frequency of the HBA1c tests. These are listed in the NICE guidelines. I think it also says there that type 2's should be given a personalised approach:
https://www.nice.org.uk/guidance/ng28/chapter/1-Recommendations#individualised-care
1.1 Individualised care
1.1.1Adopt an individualised approach to diabetes care that is tailored to the needs and circumstances of adults with type 2 diabetes, taking into account their personal preferences, comorbidities, risks from polypharmacy, and their ability to benefit from long‑term interventions because of reduced life expectancy. Such an approach is especially important in the context of multimorbidity. Reassess the person's needs and circumstances at each review and think about whether to stop any medicines that are not effective. [new 2015]

I hope you can find some kind of compromise with your surgery in spite of your frustration as you still need them on side. I believe the Direct trials are being rolled out now (possibly in the South West). Not sure where you are but after this 3rd round of widespread trials I would expect it to be rolled out nationally.
In the meantime do you have any other options to improve things solo?
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Thanks for that posting.
 
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