Views of people with diabetes about services Bridget Turner Head of Healthcare and Policy

Evidence from… Testing Times - Audit Commission Diabetes UK Listening Project Diabetes UK – Position on what should be included in the diabetes NSF Diabetes UK – Listening to people with diabetes from black and minority ethnic communities Diabetes NSF Expert Reference Group – Listening to diabetes Service users

What do people want from their diabetes services? Person centred care: treated as individuals, at the centre of their care and enabled to have their views heard at all levels of the NHS. Equity : to receive the best standards of care irrespective of who they are, where they live and what complications they may have

People with diabetes expect Prompt diagnosis Organised and planned services Care and service planning to involve people with diabetes Register, Review, Recall Access to trained diabetes care teams Information, education, support & reassurance(according to individual need) Culturally appropriate & person centred care

Experiences “I have a feeling of falling between different medics – problems are missed or not acted upon” [Audit Commission Testing Times. 2000] “I did not realise how serious diabetes was at first. Perhaps I might have taken it more seriously if I knew then what I know now?” [Audit Commission Testing Times. 2000]

“ For many years my blood sugar readings have been inconsistent, making it necessary for me to test my blood sugar up to five times daily… I am always told that my overall control is good, but on a daily basis my erratic readings give me reasons for concern. ” [Audit Commission Testing Times. 2000]

What needs to change? Service delivery decisions being made in isolation Lack of involvement of communities with diabetes Not knowing what difference involvement has made Complex, timely, inconvenient and unco-ordinated systems Paternalistic care delivery – where the person has no say in what and how Information, knowledge and education gap

So how should services be delivered? “Integrated diabetes care should aim to be organised and individual to the person with diabetes.” Diabetes UK 1999

Changing times… Establishment of systems (networks) to plan and co-ordinate diabetes care Key targets: –Practice registers and provision of systematic care, including recall, review, structured education, care plans, named contact –Provision of retinal screening for all people with diabetes by end 2007 Focus on empowerment, structured education and supporting of self-care Challenging local targets for all standards

What care are people with diabetes expecting National Service Framework standards: –Access to retinal screening by digital camera, and treatment if necessary –Access to structured education to support self care –Access to high quality paediatric diabetes services for children, young persons and parents

Vision of a perfect service Comprehensible Convenient Choice Consistent Competent Communication & teamwork Co-ordinated Control

“Being diagnosed as diabetic a year ago I felt that life was going to come to an end as I know it. It has not, because of all the help received from my medical support team.” [Audit Commission Testing Times. 2000]