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1 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is reasonable for you to expect the consultant and team to help you make a success of the pump before this therapy is withdrawn from you.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.
2 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
3 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.”
4 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.
5 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.”
6 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.