In March, the APPG for Diabetes launched its investigation in diabetes care to improve standards and reduce variation, and this week held its second meeting on: Access to Technology.
Over the last few decades we have witnessed the arrival of transformative new technologies that have changed the way we can treat and manage Type 1 and Type 2 diabetes. And yet despite these great advances, patients trying to access these technologies come up against a variety of barriers every day.
In the latest APPG for Diabetes meeting, patients, clinicians and healthcare technology advocates discussed the need to create swifter reimbursement pathways for diabetes technologies of the near future, and the crucial work to be done on widening access to current NHS available technologies now.
Laura Spratling, the first panel speaker and Senior Programme Manager for Diabetes & Atrial Fibrilation at Health Innovation Network, spoke about the Health Innovation Network’s work to improve access to technology, support for self-management and integration of care for people with Type 1 in South London. In 2014/15 the Health Innovation Network ran the Diabetes Improvement Collaborative, which successfully delivered a significant increase in the uptake of insulin pumps in the local south London adult Type 1 population from 9% to 12%.
Laura shared with us some of the key things the collaborative learnt, including: the importance of understanding the size and characteristics Type 1 populations to encourage collaborative working between neighbouring services; the fact that good pump services always reside within good diabetes services (meaning that whilst pumps should be a routine option for anyone who meets the criteria, they are also not right for everyone); and the need to plan for a realistic trajectory for each trust so that you can make a difference cumulatively.
The second panel speaker, Rosemary Featherstone, spoke about the time that it took for her to first be offered an insulin pump following years of bad glucose control and extreme hypos, and her subsequent battle for NHS reimbursement for the continuous glucose monitor (CGM) that she said ‘changed her life’.
Before being put on insulin pump therapy and a CGM, Rosemary was having frequent extreme hypos and lost her hypo awareness. This caused her to collapse multiple times, including in King Cross station and whilst being out walking her dog. Understandably, her husband worried about her walking her dog alone and driving, and her daughter didn’t want Rosemary to look after her granddaughter alone as she feared Rosemary could collapse.
Since being put on insulin pump therapy and CGM (which she initially self-funded at a cost of £4,000 a year) Rosemary says her entire life has changed. She is now freely able to do all the things she loves, like looking after her granddaughter, walking her dog and holidaying abroad. Rosemary also says she “hasn’t experience one destabilising hypo since using her with CGM”.
When discovering online that there was available NHS funding for CGMs, Rosemary applied to her Clinical Commissioning Group (CCG) but was denied – a decision she then decided to appeal. After waiting months to receive a response from her CCG about her appeal she contacted her local MP Andrew Bridgen who pressed for a response. Eventually, through help from her consultant Rosemary navigated her way through the various funding bodies – assisted also by her medically qualified son-in-law, Insulin-Pumpers UK and MP, Andrew Bridgen – and was awarded CGM funding.
Lesley Jordan, Chief Executive of INPUT (a charity that helps people with Type 1 and Type 2 diabetes access diabetes technologies) spoke about the common challenges facing people with Type 1 who are trying to access diabetes technology, and how pumps and CGMs can change the lives of those living with the condition. Lesley also spoke about the need to extend the evaluation of CGM cost-effectiveness beyond HbA1c to include: minimisation of hypos and minimising diabetes distress, also known as ‘quality of life’.
The final speakers were mum Liz Moody and daughter Lydia Moody, who spoke about Lydia’s diagnosis two years ago when Lydia was 9 years old. Liz spoke about the excellent care they had received with their consultants and diabetes specialists nurses (DSNs) in Southampton, whilst also recognising that not everyone receives such care.
Lydia was diagnosed in January and after a short period of multiple daily injections, was placed on an insulin pump soon after in May. Lydia also uses a flash glucose monitoring system that indicates glucose levels, and which Liz has been self-funding for Lydia since it was licensed for children earlier this year.
Liz said that since using a flash glucose monitor it’s made daily life for Lydia much better by not having to check her blood glucose by finger pricking between 10 and 20 times a day, including the middle of the night. Liz says that she believes “had Lydia not have had the technology she has had, she may well have had many destabilising hypos”. From Liz’s perspective the flash glucose monitoring system needs to be available on the NHS so that all children and adults are able to access this technology.
Following the panel speakers there was a chance for questions and comments from the many patients, clinicians, and healthcare professional in the audience.
Discussions were centred on a variety of areas including: the disjuncture between paediatric and adult care; the need to push for better data to understand our Type 1 populations; the need for education across the technology pathways; the overall cost-effectiveness of expanding technology access; how to better navigate CCG funding pathways for CGM; the efficient and appropriate use of staff expertise and the need for better clinician education on diabetes technology.