An unfair ‘postcode lottery’ in access to insulin pumps for children and adults with type 1 diabetes has been revealed in a survey of 152 Primary Care Trusts (PCTs) in England.

NICE, the commissioning body, recommends that the standard benchmark rate for the uptake of insulin pump therapy should be 12% of people with type 1 diabetes – or 33% for children under 12 years old. However, the survey found an average provision of only 3.9% across the country, and that this varies widely between PCTs.

Only two trusts – Blackburn with Darwen with 17%, and Halton & St Helens with 13% – exceed the NICE benchmark, while other areas, including Medway in Kent and Croydon in Surrey, have only a handful of patients using pumps.

The survey was conducted by the Medical Technology Group, a coalition of patient groups, research charities and medical device manufacturers, in partnership with INPUT, the insulin pump advocacy group, and Adrian Sanders MP, chair of the All Party Parliamentary Group on diabetes. It was supported by JDRF.

Other notable findings included:

• Only 5 out of 113 PCTs have a strategy in place to implement NICE guidance on insulin pumps;
• Just over a third (35%) of PCTs do not use tools and guidance such as NICE’s Commissioning Guide to help deliver adequate insulin pump therapy services;
• 85.6% of PCTs say that eligible patients are given a choice of using insulin pumps, but this is not borne out by the low number of patients who use them

PCTs that fall below the 12% benchmark uptake rate gave various reasons, ranging from lack to funding to shortage of specialist staff. A number of trusts mentioned lack of enthusiasm among consultants and clinicians, who may be steering patients away from pump therapy. One PCT said it requires all candidates for pumps to attend a DAFNE (carbohydrate-counting) course, and there was a shortage of places.

The authors of the report recommend that all PCTs and other commissioners, such as GP groups, should make use of the ‘How To Why To’ Guide on Insulin Pumps produced by the NHS Technology Adoption Centre, which is designed to save time and improve outcomes by sharing best practice in setting up a pump service.

They also call for better training for clinicians, more information for people with type 1 diabetes and their families about treatment options, and better access to specialist insulin pump centres for patients through the ‘Choose and Book’ system.

John Davis of INPUT says: ‘Access to a treatment as important as insulin pumps should not be dependent on where you live. Insulin pumps have been recommended by NICE because they are an efficient use of the NHS’s resources, and because they can have a dramatic impact on patients’ quality of life and clinical outcomes.

‘The MTG is campaigning to improve patient access to insulin pumps by ensuring that every person with type 1 diabetes who could benefit from an insulin pump – no matter where they live – receives the specialist care they need.’

The survey was widely reported in the regional press; Jacqui Double, mum of Tom and Joseph (pictured, with their pumps) was quoted in the press release and told Kent News of her struggle for funding. Read more here.

To find out more about the How To Why To guide, visit the NTAC website here. It is intended for healthcare professionals but there is a downloadable leaflet and the option to alert your GP to the guide.