TILII members attending the launch of the Learning Disability Hospital Passport at Stormont.
The purpose of the Hospital Passport is to provide important information about a person with a learning disability to help all staff in hospital settings make reasonable adjustments to support safe and effective care. It will also improve their experience of care and treatment. The passport was developed in line with Guidelines and Audit Implementation Network (GAIN) recommendations regarding caring for people with a learning disability in hospital settings and involved consultations with a wide range of individuals with a learning disability, as well as family and carers.
At what level did the PPI take place?
- One to one;
- Service development/delivery;
- Commissioning/policy.
PPI helped the project to:
- Improve efficiency of a service;
- Improve quality;
- Improve safety;
- Inform commissioning;
- Increase ownership.
Background.
The Public Health Agency Mental Health and Learning Disability Nursing team worked in partnership with the regional Learning Disability Forum chaired by Professor Owen Barr to facilitate the development of the Regional Hospital Passport. The passport was developed in line with GAIN recommendations for caring for people with a learning disability in general hospital settings. It involved consultations with a wide range of individuals with a learning disability, staff from Health and Social Care Trusts, voluntary organisations involved in the support and delivery of services to people with a learning disability, as well as family and carers.
Aim of involvement.
The aim of the involvement was to ensure that the passport was user friendly and would provide the most important information about the person with a learning disability. This works to help enable hospital staff to make reasonable adjustments which will lead to improvement in the care experience of the patient and also for their carer.
As well as the language used in the document we wanted to ensure that the graphics and pictures used were appropriate and would be easily understood by people with learning disabilities.
The involvement of people with learning disabilities in all aspects of the launch event helped ensure that the lived experience of these individuals and their carer was the focus of the event. Feedback from those involved highlighted that they very much valued being involved in the event in the Long Gallery. Members of the Telling It Like It Is (TILLI) group gained valuable skills and experience, which were evident from the comprehensive report provided by the group.
Method(s) of Involvement.
Challenges.
- Ensuring there was a broad range of service users and carers consulted;
- Some specialist learning disability clinical staff felt additional information should be included in the passport which users felt was not necessary;
- An advocacy organisation was engaged to consult with people with a learning disability.
Outcomes due to involvement.
Based on the feedback received, the following changes were made to the passport:
- Wording was changed in some of the sections;
- The document was shortened;
- Some of the graphics/pictures were changed based on feedback received;
- The section colours were changed to one colour;
- The size of the sections were altered to allow more space for writing;
- Some of the terminology was changed, eg date of birth was changed to ‘My birthday is (date of birth)’.
Feedback/quotes from service users/carers involved.
Some direct quotes below from service users and carers:
“Service user is more understood when in pain or refuses treatment.”
“They gave my son a side room to accommodate his needs.”
“It saved time having to explain over and over again.”
“It helps staff communicate and understand me.”
Timeframe.
2016 – May 2017.
Further Information.
For further information, contact:
Deirdre McNamee, Public Health Agency
Nursing and AHP Directorate
Email: Deirdre.mcnamee@hscni.net
Tel: 028 95 363 444