The past few years has seen the publication of a number of national reports which have highlighted the often poor response to people with learning disabilities by health services, (‘Death by Indifference’, ‘Healthcare for all’ ‘Six Lives’ investigation) which led to a number of key recommendations for improvement, including the need for reasonable adjustments in primary care services.
Over the last three years, Mencap has hosted a volunteer led project known as ‘Getting it Right – From the Start’. The aim of this project was to make reasonable adjustments to primary care services for people with a learning disability in four pilot areas – East Surrey, Mid Devon and Exeter, North Tyneside and Northamptonshire.
What they did was to work with volunteers with a learning disability to deliver workshops to over 700 staff in 72 GP surgeries which covered disability awareness, communication, reasonable adjustments and easy read information.
From the workshops, GP practices were given advice on communicating well with people with learning disabilities and on creating easy read documents to help people with a learning disability understand their health
The volunteers then went back to those GP practices to see how far they had progressed
As a result of the project, the research team have produced a range of online resources which can be downloaded, including videos regarding communication and a range of easy read templates to help people understand any medicines they may be taking.
The project evaluation produced some key messages:
- Despite differences in primary care infrastructure in the four project areas there were not huge differences in results achieved
- Stakeholders in the project were generally positive about the project’s interventions
- Locality Coordinators and volunteers were critical to the successes of the project
- Workshops were highly effective and the project recommends developing this programme of work to roll it out to other groups of primary care staff
Overall, the evaluation found that the project played a useful role in all four areas for people with learning disabilities and their family members, friends or carers, but there is still room for improvement.
Clinical Commissioning Group representatives reported
- increase in the percentage of practices implementing training for health checks (from 88% at baseline to 94%)
- increase in number of Learning Disability Liaison Nurse posts
- increase in the number of action plans showing implementation of reasonable adjustments In the from 42% at baseline to 78%
Conclusion and comment
This project clearly had an impact in the four areas that it ran. The responses from stakeholders were extremely positive and the resources that have been produced and available on the website could be a significant help to GPs across the country concerned with the practicalities of making reasonable adjustments.
One of the interesting findings from the project was the impact it had on the volunteers. The project managers reflected that their original target of recruiting 20 volunteers in each area may have been ambitious, but from the information collected from volunteers, it was clear that they had built confidence, learnt new skills and formed strong bonds in four localities and over 90% of volunteers rated their experience of taking part in the project as ‘Good’. This question was only asked in the early stages of the project however.
Volunteers also improved their knowledge, with their self rating of their knowledge of reasonable adjustments rising from 21% at the start of the project to more than 77% in the final survey.
The project also produced a range of eminently usable materials to provide practical help with reasonable adjustments in primary care which is produced as a GP toolkit
The evaluation also shows that primary care staff who have been involved in the workshops have an enhanced understanding of the issues. It remains to be seen whether this can be maintained over time and whether the gains made in this demonstration pilot project are replicable over the country.