Learning disability Metrics 8.09, 8.10 and 8.11
Peterborough had previously been involved in two projects with the Foundation for People with Learning Disabilities, one that involved working on access to primary care and the second on person centred health action planning.
The original project had worked first with 17 GP practices, ensuring they had a register for people with learning disability and implementing health checks, health action plans and health facilitation. This work was being rolled out across the Primary Care Trust and was making good progress.
Maggie Romjon, the Learning Disability Lead for the joint health and social care team in Peterborough Primary Care Trust, together with a project group, decided to address three additional Metrics as part of this project:
- 8.09 – patient experience and engagement, offering people with learning disability and their families easy to understand information about their health.
- 8.10 – patient experience and engagement, to increase the involvement in the development of local health services by people with learning disability and their families through their participation in various aspects of patient engagement.
- 8.11 – equity and access to acute health care, to ensure that people with learning disability are effectively supported during periods of care in acute hospitals.
These three Metrics were selected as they all focused on improving patient experience and engagement, an issue that people with learning disability in Peterborough felt was very important to them and to improving service delivery.
Peterborough’s story focuses on improving patient/user involvement, Metric 8.10, although there was also user involvement in the programme that was developed to improve support care in the acute hospital, Metric 8.11.
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- There was learning disability user involvement on the Partnership Board that could be utilised.
- Two people with learning disability, Nicola and Enzo, were employed and paid by the joint health and social care team for learning disability, to improve the health experience for people with learning disability.
- 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 the Patient and Public Involvement Fora, and on the subgroups such as Disability Advisory Group, Essence of Care, Health Promotion Benchmark Group etc.
- Nicola and Maggie attended and gave presentations to both the Mental Health/Learning Disability Trust’s and the Primary Care Trust’s public and patient involvement fora. These presentations described the Better Metrics work that was taking place in Peterborough. Questions at these events covered a range of topics from acute hospital care to commissioning learning disability services.
- A programme to develop and train ‘link’ staff in the acute hospitals was carried out in Peterborough, Cambridge, Norwich and Bury St Edmunds. Nicola was involved in presenting the user perspective in two of the sites.
- Maggie, Nicola and Enzo attended and on some occasions gave presentations at a number of other local, regional and national events, such as the Eastern Region conference and a National Stakeholder event in Manchester on Health Action Plans.
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- To find the time to work on new developments and user involvement.
- To involve the ‘right’ people in the project.
- User involvement can often require support from advocates, identifying people to undertake this role is vitally important.
- Knowing how and where user involvement could make a difference.
- Knowing how to get the voice of users heard.
- To ensure that user involvement is real and not a ‘token’ gesture.
- To identify ‘champions’ in the Primary Care Trust, the acute hospital and in social services to take learning disability issues forward both at a strategic level and a service level.
- To identify funds to pay for the time users committed to this work.
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- User involvement raised the profile of learning disability services across a number of organisations and groups.
- Nicola, Enzo and Maggie were able to inform the public and patient involvement fora of the development work taking place both in primary care and in the acute hospital.
- There is 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 programme has made a start in identifying ‘link’ members of staff for learning disability issues, developing a communication folder and improving easy to understand signage.
- People with learning disability in Peterborough feel they are being listened to for the first time.
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- User involvement is important to the development of learning disability services.
- It is essential that people with learning disability have access to mainstream/general primary and acute care, with support from specialist learning disability services where necessary, and service users can help to address issues to enable this to take place.
- Raising the profile of learning disability services by 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’, identifying funds for either a post or a payment for attendance at events is important.
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