Test strips - lobby your MP

[viviennem]

Please find below the text of an email I have just sent to Paul Burstow (LibDem), the Minister for Health with responsibility for diabetes:

Dear Mr Burstow

I am writing to you in your capacity as a Minister for Health to mention my concern at a situation arising throughout the country regarding the issuing of test strips to diabetics for blood glucose self-monitoring.

I am 62 years old, and have been diagnosed for 16 months with Type 2 diabetes, which is well controlled through diet and metformin. I am a member of a diabetic forum on diabetes.co.uk (this is NOT the charity Diabetes UK). The problem of test strips is becoming an issue for many of our members.

Type 2 diabetics have been refused test strips in the following PCT areas:

Buckinghamshire
Rutland/Leicestershire
South Tyneside
Cumbria
West Pennines
South Staffordshire
Kent
Devon
Cornwall
Hertfordshire
North Lancashire
Nottingham

In some cases this has been said to be the policy of the PCT; in others the GPs are doing it because of the expense of providing strips. In all cases it is contrary to the NICE guidelines which encourage diabetic self-management and the use of self-testing combined with appropriate education.

Self-testing enables Type 2s to keep our blood glucose at acceptable levels, thus avoiding complications such as blindness, kidney disease and amputation. Surely it must be more cost-effective to give us the tools to test and keep control, than to pay for the results of so-called "inevitable" complications further down the line? I, and many of my friends, manage to keep our levels very close to those of non-diabetics, helped by the use of test strips.

Even more worrying is the case of a Type 1 diabetic in Bradford, whose GP is trying to severely restrict her access to test strips. If she is unable to test whenever she needs to, she may become seriously ill or even die!

We all appreciate that NHS resources must be used as cost-effectively as possible; however, the long-term consequences of denying diabetics their test strips will be much more expensive to the NHS than allowing us the tools to keep a tight control of our condition from the very beginning.

You can find an email contact for every UK Member of Parliament at the website parliament.uk.

I've also sent this to You & Yours, Woman's Hour and Today (all BBC), and I wrote to Diabetes UK yesterday asking for their help. No reply from them so far!

Any other ideas for people to lobby?

Viv 8)

 

[Snodger]

Very good letter.

If people are willing to be interviewed then they could try their local radio stations in the affected areas. And of course the local papers. It could well be something that local journalists could get behind, and then you ask the local MPs (and GPs) to come and answer questions on air. It would need the local members of this forum to be confident in doing that, but if they were happy to, that could be very effective.

 

[iHs]

Instead of lobbying your MP what might be far better will be to launch a petition aimed at all the companies responsible for the manufacture of bg test strips. They are the real culprits with all this. My partner is an engineer (toolmaker) and he took some test strips apart to see how they were made and couldn't believe what he saw. They are just pieces of plastic strip with a tiny circuit through them. Once the tooling and the moulds are made, they cost just pennies to make. The NHS is being made to pay approx £15 for a box of 50 strips. My partner estimates that they cost only £1.50 for 50 to manufacture. There's one huge amount of profit being made that needs to be questioned and challenged.

 

[mehdave]

I agree they are too pricey but the price has been made high usually to recover R&D costs to begin with but as its been many many years they should of been brought down in price. Great letter hopefully gets someone's attention

 

[Snodger]

Instead of lobbying your MP what might be far better will be to launch a petition aimed at all the companies responsible for the manufacture of bg test strips. There's one huge amount of profit being made that needs to be questioned and challenged.

a very very good point and if anyone more organised than me wants to start this off, I for one will sign it!

 

[IanD]

Here is a selection of diabetes epetitions

 

[Serena51]

thankyou Ian, that was most useful.

 

[viviennem]

In reply to my original email to the Minister, please find below the official reply to that email:

DE00000641484

Dear Ms Metcalf,

Thank you for your email of 1 September to the Minister of State for Care Services, Paul Burstow, about the provision of blood glucose testing strips to people with diabetes. I have been asked to reply on the Minister’s behalf.

As you are aware, the self-testing of blood glucose is an important part of the self-management of diabetes for many patients. The guidelines from the National Institute for Health and Clinical Excellence (NICE) on the management of Type 2 diabetes set out circumstances in which self-testing can be useful, and in these situations it can support people in managing their glucose levels and avoiding hypoglycaemia.

The NICE guidelines are also clear, however, that self-monitoring of blood glucose is helpful only as part of an overall package of support for self-care, and it is vital that the results of self-monitoring are fully understood. This means that decisions about self-monitoring should be made on a patient-by-patient basis, and healthcare professionals should work with people with diabetes to make joint decisions about the value of self-monitoring of blood glucose and prescribe accordingly. Any primary care trust (PCT) that is automatically discouraging the prescription of blood glucose testing strips is not acting in accordance with NICE’s advice.

If any patient with diabetes has concerns about their own treatment, they should discuss the matter in the first instance with their GP. They may also wish to contact the Patient Advice and Liaison Service (PALS) at their local PCT, as PALS offices provide information, advice and support to patients, carers and their families, and may be able to resolve any concerns a diabetic patient may have about self-testing. Contact details for local PALS offices can be found online, at www.pals.nhs.uk .

I hope this reply is helpful.

Yours sincerely,

Alistair Davie
Customer Service Centre
Department of Health
----------------------------------------------------------------------------------------------------------------------
Please do not reply to this email. To contact the Department of Health, please visit the 'Contact us' page on the Department’s website, where you can also view our performance against quarterly service targets.

I've reproduced it here in full, as I did with my original email at the top of the thread. As far as I'm concerned anyone who would like to may use both in your struggle for prescribed strips. The DoH email doesn't say "Confidential" anywhere! :lol:

I think it's helpful, particularly paragraph 3; after all, if the reason you are not getting test strips is because you're not getting an "overall package of support for self-care" - well, the question to your GP/PCT, is "why I am not getting the support I need for my self-care?"

Good luck all!

Viv 8)

 

[Sue o2]

Hi all,
Ive had an answer from my local mp today here are copies of two letters that she has sent off for me
Sue

 

[viviennem]

Those are brilliant letters by your MP, Sue02.

If we could get more MPs raising this problem all over the country, we might get somewhere!

I've had a reply from Diabetes UK, too -

Dear Vivienne,

Thank you for your email.

Across the country for some time now GP's have been encouraged by PCT's to reduce the number of test strips they prescribe patients to cut costs.

We feel it is counter productive to try and save the NHS money in this way. There are considerable cost savings to be made from supporting self management, by reducing the frequency of support needed from the NHS and preventing people with diabetes from needing hospital treatment either with diabetes emergencies or long term complications.

A restriction on the type and amount of testing strips is unacceptable as this does not meet individual needs and circumstances. National guidelines and frameworks set the standards of care that people with diabetes should expect and prioritise information, education, training and support to enable people to manage their diabetes themselves.

GP's do however have the discretion to write the prescriptions, though the PCT's offer guidance on who they feel should and shouldn't be prescribed strips, it is just guidance. GP's can ultimately write such prescriptions where they feel it is necessary.

Diabetes UK is anxious that the current restrictions are lifted and your case goes to highlight the problems still being experienced. We have produced a list of steps that might help you take your case forward and these are available the advocacy pack, which can be downloaded free of charge via the following link;

http://www.diabetes.org.uk/How_we_h...ks/Availability-of-blood-glucose-test-strips/

I am glad to hear that you are not personally affected, and I would suggest you contact our advocacy service who may be able to assist you; email [email protected] or by phone on 020 7 424 1840 Mon-Fri, between the hours of 9am and 4pm. Let us know how you get on with your lobbying, and thanks for all your interest and information, it is appreciated.

http://www.diabetes.org.uk/Guide-to...managing_your_diabetes/diabetes_care_and_you/

I do hope this has been useful, but please do contact us again if we can be of further assistance. You can also call our Careline on 0845 120 2960*, Monday to Friday, 9am to 5pm. The lines are staffed by trained Careline counsellors who would be happy to offer what support and information they can.

With Best Wishes
Diabetes UK Careline(4)

The breakdown on this seems to be, that GPs can prescribe test strips if they want to, regardless of what the PCT says. And IF (if!) we're being provided with the education and support we are entitled to, then we should have our strips.

I hope this is of some use.

Viv 8)