Edinburgh health: Nearly 1,000 people with diabetes in Lothian waiting for life-changing technology

They are hoping to be given the hybrid closed loop (HCL) system, which automatically adjusts a patient’s glucose levels depending on his or her blood sugar, instead of the current system where the patient must manually adjust and administer the insulin themselves.

Paul Hughes suffered a broken cheek and elbow from collapsing when his blood sugar dropped too low. | supplied

The HCL system has been recommended for thousands of people across the UK who have Type One diabetes.

One of those forced to live in limbo as they wait is Paul Hughes, who works for Edinburgh council and has suffered from diabetes for 24 years. He originally asked to be added to the waiting list for the HCL system in 2021 but found out, after inquiry, that he had not been added until 2023.

He fears a “postcode lottery” will mean he is not able to access an HCL system for the foreseeable future.

Mr Hughes has previously suffered a broken cheek and elbow from collapsing due to his blood sugar levels dropping too low. He believes an HCL system is critical to improving his diabetes control and avoiding similar incidents in the future.

He said: “This technology would be life changing for me. I would no longer have to worry about my blood sugar dropping during the night, which currently keeps me awake.

“I am incredibly concerned about the long waiting list for those in NHS Lothian. I have sustained serious injury from collapsing due to low blood sugar so this technology cannot come soon enough.”

The hybrid closed loop involves two pieces of equipment - an insulin pump and a constant glucose monitor Picture: Diabetes UK

The HCL system is made up of two elements - an insulin pump and a constant glucose monitor (CGM).

Lothian Labour MSP Sarah Boyack used Freedom of Information legislation to obtain figures showing there are currently 991 adults on the waiting list for the pump and 841 people on the waiting list for the CGM. There are also 91 children waiting for a pump while 31 are still awaiting a CGM.

Ms Boyack said the length of the waiting lists were a “devastating blow” for diabetic patients in Lothian.

She said: “The size of the waiting list is extremely alarming. This is life changing technology and patients across Lothian are in limbo waiting to receive it.

“I have had many constituents contact me, anxious about the lack of clarity for when they will receive an HCL system. The Scottish Government has announced funding to expand the HCL rollout, but it means nothing if it is not reaching people on the ground.

“That is why I have written to Neil Gray to ensure that type-ones across NHS Lothian are not left out in the cold when it comes to getting a HCL system”.

In her letter to Mr Gray, Ms Boyack asked what steps the Scottish Government would take urgently to reduce the waiting lists and increase NHS Lothian’s supply of the “game changing” technology.

She also asked how much of the recently announced £8.8 million funding for HCL would be made available to NHS Lothian and what the Scottish Government’s timeline was for ensuring that every Type One duabetes sufferer across Scotland is offered an HCL.

Michelle Carr, NHS Lothian’s chief officer for acute services, said all health boards in Scotland, including NHS Lothian, were under significant financial pressure.

She continued: “We operate a system of prioritisation, that focused initially on directing available hybrid closed loop systems towards pregnant women, children under 18 and those patients assessed as a clinical priority.

“Due to additional technology support from Scottish Government, we have been able to offer this technology to a wider group of patients outwith this criteria, with a continued focus on clinical need.

“Despite this and the challenges of providing services for the second largest residential population in Scotland, we are actively working to address the high numbers on our waiting list for insulin pumps.

“We have redesigned our services to enhance support for our patients, particularly those at most risk and those with complex needs. We remain committed to prioritising patient care and delivering the best outcomes.”

Public Health Minister Jenni Minto said: “We have significantly expanded access to diabetes technologies - investing more than £29 million between 2016 and 2022 – but we recognise the frustrations of people waiting. We have committed to continued expansion in access to these life changing technologies and will be investing up to £8.8m in this financial year.

“Almost 300 adults received insulin pumps from June to September in 2024 alone. We are committed to providing around 2,000 people with hybrid closed loop systems this year.

“More than 60 per cent of children already have access to a hybrid closed loop system and by spring next year, any child or young person who wishes to do so should have access.”