We are not alone in campaigning to make diabetes technology a routine option in clinic.
First and foremost, NICE (National Institute for Health & Care Excellence) and Technology Appraisal 151
The NICE website says: “Aim of technology appraisals: NICE is asked to look at particular drugs and devices when the availability of the drug or device varies across the country. This may be because of different local prescribing or funding policies, or because there is confusion or uncertainty over its value. Our advice ends the uncertainty and helps to standardise access to healthcare across the country.
The NHS is legally obliged to fund and resource medicines and treatments recommended by NICE’s technology appraisals.” (INPUT’s italics)
Note that NICE first recommended insulin pump therapy in 2003.
INPUT is a member of Patients Involved in NICE.
Patients Involved in NICE (PIN) is a coalition of over 80 patient organisations and is committed to enabling patient groups to engage productively with NICE. Independent from NICE and the pharmaceutical industry, they use their combined knowledge, experience and direct contact with patients from a wide range of conditions, to ensure NICE puts patients, carers, and patient groups at the centre of all of its work.
They act as a critical friend and a respected and equal partner in developing and shaping aspects of NICE’s work. They provide a forum for enabling patient groups to engage with NICE, working alongside NICE´s Public Involvement Programme.
Diabetes UK, INPUT and JDRF UK collaborated to write a guide to diabetes technology following publication of NICE’s updated clinical guidelines for children and young people with diabetes in August 2015. We followed up with a guide to the updated clinical guidelines for adults with type 1 diabetes published by NICE at the same time. These guides can be viewed by clicking the orange “Type 1 Technology Guides button on any page.
The Association of British Clinical Diabetologists (ABCD) undertook a national (4 nations) CSII audit. The audit was supported by Dr Rowan Hillson (the National Clinical Director for Diabetes until March 2013), and funded by ABCD, JDRF, Diabetes UK and industry. It was the first audit of its kind to find out how many people are using pumps in the UK (rather than an estimate), and looked at provision and standards of services for CSII with a view to raising the standards of clinical and patient education and creating a clear guideline for interpretation of the NICE technology appraisal and indications for CSII. Headline figures from the service level audit were announced in March 2013 and suggest that 6% of adults with Type 1 use a pump, and 19% of children. Click here to read the report.
Read ABCD’s Standards of care for adults with type 1 diabetes here.
Pumps, CGM, Flash in Parliament:
15 November 2018 – Written Answers (question by Sandy Martin MP)
15 October 2018 – Written Answers (question by George Howarth MP)
17 October 2018 – PMQ’s (question by Steve McCabe MP)
19 July 2018 – Written Answers (question by Ruth George MP)
11 July 2018 – Commons Debate (question by George Howarth MP)
3 July 2018 – Written Answers (question by Justin Madders MP)
14 January 2015 – PMQ’s (see ‘column 866’)
25 June 2014 – House of Lords
25 March 2014 – Written Answers
25 March 2014 – Written Answers
17 December 2013 – Written Answers
25 November 2013 – Written Answers
12 Nov 2013 – Written Answers & Statements
3 July 2013 – House of Lords
27 June 2013 – Written Answers & Statements
16 April 2013 – Written Answers & Statements
19 March 2013 – House of Lords
16 January 2013 – House of Lords, see ‘column 765’ 8:14pm
INPUT is a Patient Group member of the Medical Technology Group, a coalition of patient groups, research charities and medical device manufacturers working to make medical technologies available to everyone who needs them. Uptake of medical technology in the UK is not as good as it should be, given their great potential to provide value for money to the NHS, patients and tax payers. The MTG believes that patients and clinicians need better information about medical technologies so that they can make informed choices about their medical care.
The MTG is campaigning to improve access to technologies recommended by NICE, including insulin pumps.
Further information can be found here: www.mtg.org.uk
All Party Parliamentary Groups: APPGs include members of the House of Commons and the House of Lords. APPGS meet together, relatively informally, to discuss a particular issue of concern. APPGs are either country based, e.g., the APPG on Zimbabwe, or subject based, e.g., the APPG on breast cancer – the topics reflecting parliamentarians’ concerns. APPGs generally have officers drawn from the major political parties and strive to avoid favouring one political party or another. Inevitably, they tend to focus most on the governing party’s priorities, discussing new developments and inviting Government Ministers to speak at their meetings. APPGs have no formal place in the legislature, but are an effective way of bringing together parliamentarians and interested parties. APPGs allow others in the subject such as campaign groups, charities and other non-governmental organisations in the field to become involved in discussions and influence politicians. INPUT regularly attends these meetings to keep insulin pump therapy high on their agenda.
The purpose of APPG for Diabetes is to raise in Parliament the profile of diabetes and its prevention; to monitor new initiatives; and to work to ensure a better deal for people with diabetes.
Further information can be found here
Anna (from insulin independent blog) has also posted about her impressions of an APPG meeting:
INPUT regularly attends meetings of the Cross Party Group on Diabetes in Wales
INPUT regularly attends meetings of the Diabetes Think Tank, “an active forum of leading healthcare professionals, patient organisations and policy makers, all with a special interest in diabetes and a commitment to tackling the challenges faced by the diabetes community.”
The University of Manchester e-Research Centre studied the required adoption processes and pathways for non-pharmaceutical technologies in the NHS, including insulin pumps. INPUT was on the steering committee.
The published paper can be read here.
Diabetes Technology Society – an international non-profit organisation whose mission is to spearhead collaborative efforts by experts in academia, clinical practice, industry, and government to accelerate development of practical technology for treating, monitoring, diagnosing, and preventing diabetes mellitus and its complications. (Note: INPUT is not involved with this society)
The NHS Technology Adoption Centre‘s mission was to work directly with the NHS at a clinical, managerial, and procurement level to identify and overcome the barriers to adoption of innovative technologies which have already demonstrated clear benefits to patients and will improve system efficiency.
The project worked with 3 mentor hospitals which had pro-active pump clinics, and 3 host trusts who wanted to establish good quality pump clinics. The project is now complete, and the host trusts are running pump clinics and ready to mentor other trusts. The “How-To-Why-To” Guide was published in June 2010. Aimed at clinicians, managers and commissioners it is available online here
INPUT was actively involved in this project.