Peterborough’s story focuses on improving patient/ user involvement:
Two people with learning disabilities, Nicola and Enzo, were employed and paid by the joint health and social care team for learning disability, to improve health experiences for people with learning disabilities.
Nicola and Enzo are members of the Peterborough User Group and were able to feed information from the group on to others as well as taking information on the work they were doing back to the group.
Nicola and Enzo took part as user representatives in a variety of patient and public involvement groups.
'Link’ staff were trained in the acute hospitals in Peterborough, Cambridge, Norwich and Bury St Edmunds. Nicola was involved in presenting the user perspective in two of the sites.
User involvement raised the profile of people with learning disabilities across a number of organisations and groups.
There was greater collaboration between the acute hospital and learning disability services – with specific examples of support being given to departments in individual cases through the Community Learning Disability Team.
The acute hospital identified ‘link’ members of staff for learning disability issues, developed a communication folder and improved easy to understand signage.
People with learning disabilities in Peterborough felt they were being listened to for the first time.
People with learning disabilities can help primary and acute health services to improve access.
User/patient involvement is a slow process and the impact is difficult to measure in the short term.
Getting the ‘right’ people involved at all levels is key to success.
You cannot expect user involvement to be ‘free’! People need support.
Alison has a wealth of experience in the field of learning disabilities, having worked in senior commissioning, consultancy and service development roles. She actively serves on a number of national advisory boards and is published widely.