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NHS funding for insulin pumps

John Davis, who runs the pump support group INPUT, looks at the current funding situation in Britain

Following the publication of NICE Technology Appraisal Guidance No. 57 (Insulin Pump Therapy) on 26th February 2003, there are now no major funding issues for pump therapy in England and Wales. Scotland still have yet to make a decision.

NICE Guidance No.57. “Continuous Subcutaneous Insulin Infusion (CSII or ‘insulin pump therapy’) is recommended as an option for people with Type 1 diabetes provided that:

• Multiple-dose insulin (MDI) therapy (including, where appropriate, the use of insulin glargine) has failed; and
• Those receiving the treatment have the commitment and competence to use the therapy effectively.

It is important to note the words “where appropriate”, it is not a requirement that patients should have used insulin glargine before they start pump therapy.

People for whom MDI therapy has failed are considered to be those for whom it has been impossible to maintain a haemoglobin A1c level no greater than 7.5% (or 6.5% in the presence of microalbuminuria or adverse features of the metabolic syndrome) without disabling hypoglycaemia occurring, despite a high level of self care of their diabetes. ‘Disabling hypoglycaemia’, for the purpose of the guidance, means the repeated and unpredictable occurrence of hypoglycaemia requiring third-party assistance that results in continuing anxiety about recurrence and is associated with significant adverse affect on quality of life.

As long as the persons with Type 1 diabetes meet the above criteria, PCTs will not be able to refuse making this treatment available on grounds of cost. PCTs not only have to take NICE guidance into account. They have a statutory obligation to provide funding for NICE recommended treatment where this is considered appropriate by the clinician and patient. However, the decision to recommend a particular form of medical treatment over any alternatives is ultimately a clinical one.

The Final Directions from the Department of Health require PCTs and NHS Trusts to provide funding “to ensure that a health care intervention that is recommended by NICE in a Technology Appraisal is normally available:

1. to be prescribed for any patient on a prescription form for the purpose of his NHS treatment; or
2. to be supplied or administered to any patient for the purpose of NHS treatment”

This means that if patients meet the NICE criteria of repeated unpredictable hypoglycaemia, they will be funded by their PCT or NHS Trust. The necessary funding has been provided to PCTs for all patients to receive NICE approved treatments covered by the funding Direction. This includes the money to employ appropriately trained staff and precludes the need for “capping”. The final decision for funding rests with the consultant regarding whether or not the patient should be treated in line with NICE recommendations. Once this decision has been made the PCT should release the necessary funds.

The Secretary of State expects patients treated under the criteria in the NICE guidance to have their therapy funded by the PCT/Trust. He would be interested to hear of any instances where this has not happened since March 2004, when the Direction came into force. Contact us if this applies to you.

John Davis
INPUT
9 Grafton Gardens
Lymington
Hants SO41 8AS
Tel: 01590 677911
www.input.me.uk
john.davis@input.me.uk

Author: John Davis <john.davis@input.me.uk>. John Davis is not a medical professional. He has Type 1 diabetes and uses an insulin pump. The information given here is based on his own personal experience. More about John Davis...

Created: October 2005; Last updated: Tuesday 21 November 2006

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Reader comments

• On 1 Jun 2005 Mandy wrote:

  I have just been reading this site, it was given to me by a lady on another site from NZ. I have a 12 year old son who i am desperate to get the pump for to give him an easier life. The hospital he attends dont seem to recommend it just yet, it seems to me that its the cost more than anything. I AM going to keep fighting for it until it's easily available for all people with diabetes. Thank you.

• On 26 Jan 2005 Tracie Voysey wrote:

  This website was great to read. I have spoken to John many times on the phone. We are still fighting for an insulin pump for our son. The PCT say yes, the consultants are unsure. Let's hope this is the way forward by more people getting the care they would like rather than this is what you will do and this is the care you will have. Keep up the good work, John.

• On 23 Sep 2004 Yvonne Leggat wrote:

  I couldn't believe my luck when I found this web-site, I am now going to pursue this with my Diabetes Team. I've had diabetes for 21 years (since I was 9) and for the last 3-4 years, despite trying different regimes, in fact I've lost count, my bloods are all over the place, ranging from 2.5 - 30, I feel that the pump would benefit me greatly, since I'm newly married and wanting to start a family asap. I'm now going to push for the pump, which I think could solve all my problems.

• On 7 Apr 2004 Jonathan Deacon wrote:

  I have been a diabetic for 39 years and only recently have I discovered about the existence of insulin pumps. I suspect that I am unlikely to be considered a suitable candidate for NHS assistance as my diabetes is quite controlled and I rarely have hypos or hypers but having read about the obvious advantages of pumps, I would very much like to obtain a suitable device and would fund it myself.

• On 20 Nov 2003 Zoe McQuade wrote:

  I have had diabetes for 25 years and I have been in hospital quite a lot of times over the past. I am on 4 injections a day and I am interested in the pump. My GP said he would support me. My consultant has not agreed as yet. But with your info on this website I am determined to have a pump.

• On 19 Jul 2003 Matt Morrison wrote:

  I am 16 years old and have had diabetes for six years. In that time my blood glucose results were high most of the time. I hated not being able to eat what I wanted to. I have been on the pump for just two weeks, it is incredible how my results have come down so quickly. I recommend it to everyone. Julie Scott from the Disetronic team has been so helpful.

• On 16 Feb 2003 Gwen Young wrote:

  I am a new user of an insulin pump. I have had problems for years with high insulin requirements during the night and morning. By the time I was using 60u of Lantus and 20u of Novarapid at bed time I knew the only way forward was to use a pump. I am having wonderful support from Disetronic (Deborah) and with their generous offer of a trial period I have now been pumping for nearly 2 weeks. I think I have suprised a number of my health professionals as to the amount of insulin I require however I seem to be winning now. It would appear that I will have to fund the pump myself because my Clinical need is not great enough. I am awaiting the NICE report so hope that they will come up with the availability of funds for people like me who want the best for our bodies and prevent long term complicatios. I have enjoyed reading your site and will use some of the information to help me to find funding before my trial expires.

• On 15 Dec 2002 Rebecca Wikman wrote:

  I have used pump therapy for the last 15 years (since I was 14) as it is available on the Swedish NHS. However I have been living in the UK for the last 8 years and it is now time for renewal of the pump - as this treatment is not freely available in the UK I am terrified of going back to injections. These pumps offer much more control and freedom than pens and anyone who is thinking about obtaining a pump should do so as it will completely change their life for the better. I really wish my primary care group will see sense and save money in the long run as this therapy can guarantee a less troublesome complications for me in the future.

• On 10 Oct 2002 Ian Holmes wrote:

  Our 9 year old daughter has been on a pump since July 2002. It has been the best move we ever made. Her choices have increased, her freedom improved, she feels great and best of all her blood glucose readings are much more stable and managable. HbA1c had already shown improvement just 6 weeks after being on the pump.

• On 30 Jun 2002 Beryl Ann Turnbull wrote:

  I have been type 1 diabetic for the past 30 years and only recently begun to have difficulty maintaining my blood sugar levels. I feel a pump would solve my problem with regard to fluctuating bsl's, thereby avoiding hypos and hypers.

• On 18 Jan 2002 Sam Watkins wrote:

  I got my pump on the 8/11/2001. I have a D-TRON from Disetronic, which I got with four year interest free loan from Disetronic! This has meant that the funding is a little easier and the way I feel now is worth every penny! I have been diabetic for 24 years, and my last HbA1C was 6.6 just after Christmas. I feel really well.

• On 6 Jan 2002 G Otten wrote:

  Just a note from Germany: although a lot more people here get a pump than in the UK, don't think it's automatic or easy, as our health care carriers also count their pennies (euro cents). BUT, big BUT, they have also realised that the long term health AND social costs of bad diabetes therapy is very much higher than the cost of a pump.

  PS: if anyone of you needs information or is moving to Germany and needs a few tips, feel free to send me a mail.

• On 14 Dec 2001 Abida wrote:

  For the gentleman who had concerns about being so young and on the pump, I started pump therapy when I was 15. I was able to keep playing soccer, take ballet classes and sleep late if I wanted. I am still on pump therapy five years later and have been able to keep my HbA1c's around 7.5 or so but I want to improve so I can start a family soon. I would recommend anyone to start on the pump but only if you are ready and really want to. Sometimes people think it's horrible to be attached to a machine all day but I don't mind and you have to have the same mentality. Hope this helps!

• On 9 May 2001 Konstantinos Kyriakidis wrote:

  I've been a diabetic for 25 yrs. I used all kinds of therapys and I must say that the pump is the best of all. I feel more independent, and using it is very easy. The pump changed my life. Before the pump I had more hypos and now I feel much better. I must say that it was a matter of getting use to it because of the steady infuson and the danger of more hypos but now I've got it under control and it is GREAT. I would like to advice everyone to get a pump.

• On 15 Mar 2001 Lisa wrote:

  I feel very priviliged that my diabetes centre were able to find the funding for a pump for me. I've felt healthier and more in control over the past 8 months since having the pump than I ever was on 4 injections a day. I have had diabetes for over 20 years and the last few years before the pump were very difficult with unexplained highs even when I would eat the same food at certain times every day.

• On 15 Mar 2001 Nate wrote:

  Well I have had diabetes for five years and I am only 18. My doctor hopes to have me on the pump very soon. Is there any major concerns out there to being so young and starting on the pump?

  • On 15 Mar 2001 John Neale replied:

    18 is a great age to start on the pump. It's an age when daily routines can disappear and the flexibility a pump offers may be particularly useful.

• On 9 Jan 2001 Yvonne Gullan wrote:

  I have had diabetes for over 20 years and I am desperately in need of some help! The diabetic consultant I see told me he did not know why my blood sugars were 'swinging' around so much and that I would be better off on an insulin pump! He then said he would write to me with the details, I am still waiting. This page just makes me feel that I am not alone. Thank you.