FAQs

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June 2013 – We are aware of a number of problems with pump funding since the NHS changes in April 2013.  We have heard of Clinical Commissioning Groups (CCGs) saying they are not responsible for pump funding, or referring pump requests to an Individual Funding Request panel (IFR). We are seeking clarification on a number of issues and will update this page with any relevant information.

Note that funding of insulin pumps & consumables and replacement pumps for those out-of-warranty for children & young people is now the responsibility of the NHS England Commissioning Board.  We are trying to find out exactly how a clinic should go about getting funding.

1 So INPUT promotes insulin pump therapy; who else supports it?

We don’t think we ‘promote’ insulin pump therapy – we recognise it wouldn’t help everybody, and not everybody would want it. Rather, INPUT is helping improve access to  insulin pump therapy so that it is available to all who need AND want it.

Diabetes consultants support it – the Association of British Clinical Diabetologists’ position statement on standards of care for the management of adults with type 1 diabetes includes this: “All people with type 1 diabetes should have access to … and insulin pump service (and) … continuous glucose monitoring for those who would benefit.”

The NHS supports insulin pump therapy – and funds it for people who meet certain criteria – link here

Dr Rowan Hillson MBE, National Clinical Director for Diabetes until April 2013, supports it – article here.

Juvenile Diabetes Research Foundation (JDRF) supports insulin pump therapy – position statement here

Diabetes UK supports insulin pump therapy – have a look at their page here

2 Why is the NHS so anti-pumps?

We don’t think it is!  Have a look at the Advocacy Allies page to see what the NHS is doing to improve access to insulin pump therapy.

3 My consultant says I need a pump but the CCG will only fund 5 pumps a year and I’m 6th on the waiting list.  What can I do?

Clinical Commissioning Groups are obliged by law to provide funding for however many insulin pumps are needed.  They are not allowed to cap the number of pumps they fund.  They may have set a number so that they can plan a budget but that number is not a cap.  Your consultant may have misunderstood, or the CCG may be putting pressure on the consultant not to prescribe too many pumps.  If your consultant has misunderstood, you can advise him or ask him to contact INPUT.  If it is the latter, INPUT needs to know about it so that we can challenge the CCG and make them aware of their legal obligation.

4 My DSN says I don’t qualify for funding as my HbA1c is under 8.5%.

You don’t have to meet all the NICE criteria to qualify for funding.  Click on the “NICE TA151” link at the bottom of this page.  You will see that it clearly states a OR b.  You might want to print it out and show him/her.

5 My consultant has threatened to take my pump away from me unless I can bring my HbA1c down. What can I do?

Ask your consultant some questions, be assertive but not aggressive.

What kind of improvement did /does the consultant expect? Be aware that under NICE guidance (technology appraisal 151) your consultant is required to review how effective pump therapy is for you, and stop this treatment if it is not effective.  But this doesn’t only mean HbA1c – do point out any improvements you have seen.  Is your day-to-day control steadier?  Have you had fewer hypos that need 3rd party help?  Have you had fewer hospital admissions?  Have you been able to go back to work?

Can they help you make the most of your pump?  What have the consultant and team done to help you bring your HbA1c down?  Have you had extra training sessions?  Have you had regular phone contact with the nurse to discuss your basals/bolus rates and other settings such as the duration of insulin?  It is reasonable for you to expect the consultant and team to help you make a success of the pump before this therapy is withdrawn from you.

How will removing the pump help you achieve better control?  The pump is a tool to help you get the best results.  It is not a reward for good or bad behaviour.  Your consultant’s job is to help you to manage your health in the best way possible.  Ask your consultant how he or she thinks that multiple daily injections will give you better control than the pump.

Don’t be afraid to ask questions of your consultant, and remember if you can’t work well together you can ask to be referred to another clinic.  It’s YOUR health and YOU are the most important member of your healthcare team.

6 My clinic says I have to do a DAFNE course before they’ll put me on a pump, and there’s a long waiting list.

Under NICE criteria, you don’t have to have done DAFNE or any other formal programme.  However, you do need to have the knowledge that such courses provide.  Some clinics insist on patients being DAFNE-trained before starting pump therapy.  If you already know how to carb count, adjust your insulin according to your results, exercise rules, sickday rules, etc then talk to your clinic about why they want you to use up a valuable DAFNE place when you already have that knowledge.  They might be willing to test your knowledge and let you avoid doing DAFNE.

Bournemouth Diabetes and Endocrine Centre has an online teaching programme that teaches similar things to DAFNE.  Have a look at the website on www.bdec-e-learning.com

7 I have diabetes as a result of pancreatitis.  Can I still get a pump?

The Diabetes Policy Lead at the Department of Health says:

“As you are aware, patients with pancreatitis are at risk of developing diabetes or, in some cases, a condition equivalent to having Type 1 diabetes.  This is because pancreatitis causes the destruction of the islet cells resulting in the partial or total lack of insulin.  People with pancreatitis are usually given the classification of Type 1 diabetes.

The NICE guidelines on insulin pumps specifically refer to Type 1 diabetes because this is where the bulk of the evidence relating to the benefits of insulin pump therapy sit.  It is important to recognise that the cause of pancreatitis may have an influence on a clinician’s decision as to whether insulin pump therapy is appropriate.

For patients with uncontrolled diabetes as a result of pancreatitis, it may be possible to seek funding through the Primary Care Trust’s Exceptional Circumstances Committee.  However, this is subject to the patient’s consultant agreeing that insulin pump therapy would improve their condition.”

8 Can animal insulins be used in insulin pumps?

Yes!  See our “Articles and studies” page for an article published in the Journal of Diabetes Nursing in 2011.

9 My teen has been using a pump successfully and is now being told he/she has to have a trial of MDI, in accordance with NICE. He/she is getting on so well, why should he/she have to change things?

We understand your concern; why change things at such an important and stressful time of life?

The trial of MDI between the ages of 12 and 18 referred to in NICE TA 151 only refers to children who, by the same guidance, did not have to “fail” at MDI prior to starting pump therapy. So if a child went from twice-daily injections straight to a pump, then a genuine trial of MDI once they are old enough to try it properly may be appropriate.

The relevant section of the guidance, so that you can quote it to the clinic or PCT, is this:

4.3.9 In developing the recommendations for children, the Committee considered that children 12 years and older would normally be competent to self-inject an afternoon dose of insulin at school which would allow for a proper trial of MDI therapy. The Committee also agreed that because MDI therapy based on long-acting analogues is more efficacious for type 1 diabetes mellitus than MDI therapy based on older insulins, MDI therapy should be judged to be unable to attain the required HbA1c levels only if it is based, if clinically appropriate, on long-acting insulin analogues. The Committee considered its approach for children on insulin pumps who reach the age of 12 years and who, following this guidance, would not have had a trial of MDI. The Committee considered that the continuation of CSII could not equitably be supported without a trial of MDI after that stage. The Committee was mindful that making such a recommendation too strict could mean a change in insulin regimen for children who had achieved satisfactory control of their blood glucose level. The Committee discussed the implications of undergoing such a trial, especially during a period where children experience many developmental, social and NICE technology appraisal guidance 151 18 educational changes. It concluded that such a trial of MDI would normally need to be undertaken sometime before a child reached adulthood at the age of 18 years.

So you see, as long as MDI has been tried at some stage before 18, then that’s all that is required. If your child did this trial before he/she got his/her pump, there is no need to do it again.

In the few cases where we have heard about, teens who have undertaken a trial have only lasted a few days before it was abandoned and the pump was given back. This reassured the PCT that NICE has been adhered to. So even if your child does need to undergo a trial, do discuss with your team how/at what point they would decide that MDI was or was not working.

10 My GP says he can’t refer me to the clinic of my choice as its not on his list – is that right?

No.  We asked the Department of Health, who told us “Patients have a right to choose their provider on referral to their first consultant-led out-patient appointment with a consultant-led team.  This also applies to referrals for a second opinion.  Patients are able to choose from any clinically appropriate provider in England that meets NHS conditions and costs.

This right is underpinned by legally binding Directions from the Secretary of State to primary care trusts (PCTs) which were published alongside the NHS Constitution and took effect from 1 April 2009.  The Directions require PCTs to ensure that patients needing an elective referral are offered a choice.  The Directions also place duties on PCTs to publicise and promote patients’ entitlement to choice and to publish and report to the strategic health authority, the number of choice related complaints and the action taken by PCTs.”

11 What’s the difference between ‘disabling’ hypos (in NICE TA 151) and ‘severe’ hypos (that would cost me my driving licence)?

Question 6 on the DVLA Diab1 form asks, “Have you had more than one episode of severe hypoglycaemia (requiring the assistance of another person) in the last 12 months? Please only count episodes where you needed help. Do Not count episodes where you were given help but could have treated yourself.”

The Diab1 form filling guidance says, “You do not need to count episodes where you had help but could have treated yourself. Needing assistance would include: admission to Accident and Emergency, treatment from paramedics, or assistance from a partner/friend who has to administer glucagon or glucose because you cannot do so yourself.

In the past 12 months, have you in fact had any hypo incidents where you were admitted to A&E, were treated by paramedics, or needed glucose or glucagon from a partner for friend when you were unable to treat yourself? If the answer is no, then you have no need to tick the ‘yes’ box on the Diab1 form.

Meanwhile, the NICE TA 151 states that, “For the purpose of this guidance, disabling hypoglycaemia is defined as the repeated and unpredictable occurrence of hypoglycaemia that results in persistent anxiety about recurrence and is associated with a significant adverse effect on quality of life” (Sec. 1.1).

As you can see, there is a very big difference between the Diab1 form’s definition of hypos that make you unsafe to drive and the NICE TA definition of disabling hypos that might be helped with a pump.

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Medtronic have addressed some myths and misconceptions about insulin pump therapy here

A lighthearted (but informative) look at FAQs from the Shoot Up or Put Up blog http://www.shootuporputup.co.uk/2009/04/pumping-for-beginners/