How can we ensure fewer people experience difficulties coping with diabetes? And how can we make appropriate support available for anyone who needs it?
By Dr Debbie Cooke: University of Surrey and Dr Michelle Hadjiconstantinou
The purpose of the UK All-Party Parliamentary Group for Diabetes (@APPG_Diabetes) is to raise awareness of diabetes and promote engagement, on various topics, between stakeholders and parliamentarians. At its meeting on 22nd March, the APPG wanted to hear about the psychological support available to people with their diabetes and families. Anyone can attend the APPG meetings, held in the House of Commons, and the committee room was packed. The Rt Hon Keith Vaz MP (Chair, APPG for Diabetes) commented that he never would have expected to see so many people attend. There were about 70 of us, many standing up for the 2-hour meeting, including people with diabetes, family members, clinicians, researchers, representatives from charitable organisations (namely, Diabetes UK), and industry.
The number of attendees was testament to the huge unmet need for psychological support. A Diabetes UK Report found that 76% of people who needed support were not offered it. The introduction of the APPG meeting agenda states: ‘At least 4 in 10 people with diabetes experience emotional or psychological problems, such as depression, anxiety and diabetes distress. This can impact their ability and motivation to self-manage, leading to poorer health outcomes, reduced quality of life and increased healthcare costs’.
To start the meeting, there were several brief speeches. Jess Croll-Knight (Program Coordinator, Diabetes UK; @jess_ck) opened the meeting with a moving, personal account of her journey with type 1 diabetes and how she was referred to several different parts of the health service, over many years, before accessing appropriate psychological support. Her experience was echoed in the distressing account from a mother whose daughter had died by suicide, after years of living with an eating disorder and recurrent episodes of diabetic ketoacidosis.
Dr Chris Gillespie (Consultant Clinical Psychologist, Derby) highlighted that recent evidence suggests that what appears to be, or is labelled as, depression is not always major depressive disorder. In some cases, it may be diabetes distress, i.e. a ‘normal’ response to living with a frustrating and relentless long-term condition. This distress is more closely related with glucose management (e.g. HbA1c) than depression. Chris spoke about five key areas on which he works with clients: diabetes distress, the “3 Fs” – fear of hypoglycaemia, complications and needles; eating disorders; insulin omission; and communication with healthcare professionals.
Presentations were also delivered by members of the North West London Diabetes Transformation Program (Amrit Sachar, Bucchi Reddy and Ruth Miller). This is one of the largest, most innovative transformation programs in the UK. They talked about the ‘golden thread’ of their mental health strategy which runs throughout their program. Anne Moore (Group Nurse Director, Northumberland) described examples of multi-agency partnerships working, and argued for a greater focus on the care of people with learning disability and diabetes. Dr Kirsty MacLennan (Clinical Psychologist, MacLeod Centre) emphasised the importance of embedded psychology services and offering supervision/support for healthcare professionals, e.g. by sitting alongside them in clinics. The UK’s NHS Improving Access to Psychological Therapies programme was notable by its lack of representation at the meeting. However, the meeting coincided with the publication of the full implementation guidance on IAPT Pathway for People with Long-term Physical Health Conditions and Medically Unexplained Symptoms.
We hope that more voices can be present at possible, future meetings. The Chair said he would like to convene another meeting outside London. We came away from the meeting energised. We sensed real momentum and appetite for change but we realise that we were in a room full of like-minded people. The big question now is how we can raise awareness and achieve those improvements in care? The APPG meeting gave us a good foundation to start that work.
The APPG for Diabetes will produce a report of evidence and testimonials and is looking for more written statements/evidence. The consultation is open until midnight on 1st April. For more news and views on this important meeting, check out the @APPG_Diabetes Twitter feed.