NHS Western Isles Learning Disabilities Collaborative Celebrating Good Practice

NHS Western Isles Learning Disabilities Collaborative Celebrating Good Practice

This report is about the work of the NHS Western Isles collaborative. A collaborative are people and groups that work together. The University of Glasgow was asked by NHS Western Isles and the Scottish Government to look at the work of the collaborative and write a report about it. The collaborative was set up to make sure people with learning disabilities have the same rights and access to healthcare as everyone else. 1

The aim of the collaborative is to make sure health services are aware of the needs of people with learning disabilities when they are planning and delivering services. To make this work the collaborative focused on: Involving adults with learning disabilities in service planning The collaborative has worked in partnership with an advocacy group called Stand Up For Yourself. The group shared their experiences of health services with the NHS Western Isles Board. They talked about: Experience of hospital visits Communication with health care staff Relationships with health care staff Getting easy read information Making easy read health information Health leaflets are being put into easy read. Also communication with service users are being put into easy read. This is being done to help build a partnership with service users. 2

Electronic health records NHS Western Isles is improving electronic health records of people with learning disabilities. This will let health care staff know the needs of people with learning disabilities. This will give people a better health care experience. Learning disability link workers Some health care staff wanted to improve services for people with learning disabilities. They became learning disability link workers throughout the Western Isles. Training Health care staff are getting much more training to help them deliver better services to people with learning disabilities. 3

What is the aim of the report? To find out what learning disability link workers thought about the learning disabilities collaborative. To find out what services users thought of the learning disabilities collaborative. In particular the work of the self-advocacy group. To look at how the way people work has changed in NHS Western Isles since the start of learning disabilities collaborative. To find out if there is anything that is stopping the learning disabilities collaborative from working well. 4

To find out what things make the learning disabilities collaborative work really well. To be able to say how much better health experiences are for people since the start of the learning disabilities collaborative. To be able to say how much change there has been for staff delivering services in NHS Western Isles since the start of the collaborative. To be able to say how much change there has been for patients who receive services in NHS Western Isles. There was a research team who found out all the information that is in this report. 5

The research team worked closely with the manager of the collaborative. The research team talked to a group of people who work in the collaborative. Some of the people included: Community learning disability nurses GPs Speech and language therapists Advocacy workers What did the group say? One person said that the collaborative had made people more aware of the needs of people with learning disabilities in health services, voluntary organisations and the council. One person said that having sports that are inclusive was so positive that it made many people want to get involved in the whole community. 6

Another person said that people with disabilities where no longer being ignored. This changed because the collaborative made health care staff more aware of the needs of people with learning disabilities. One person said that the collaborative had changed ways of working. Having things planned out work much better than just doing things as you go along. The researchers talked to people who had been involved in the training that the collaborative organised. They said that the training was very valuable and they were glad to receive it. 7

One person said it would be good to get the training when people first start their job. The research team talked to someone who made easy read health leaflets. The person said that they wanted to turn all the NHS Western Isles leaflets into easy read to: Make ourselves more learning disability friendly and change our practice to become more inclusive. It was clear that easy read leaflets also helped other people who have difficulty reading. The easy read leaflets help people access health resources. 8

The researcher found out that not many people in the group had heard about learning disability link workers. One person said that having a list of the link workers would be a good idea in the future. The research team talked to the link workers. The link workers said that people in the Western Isles had become much more aware of the needs of people with learning disabilities since the start of the collaborative. They said that a gap had been filled. Most link workers found the training useful. 9

Some said they had seen a big change in the way they work. Many said they were much more confident in working with people with learning disabilities. The link workers said that they had seen a big effort to change things in 1 or 2 departments. The link workers said that these changes were slow and steady. One link worker said that it was important to make a difference no matter how small. The research team sent questions to 1080 NHS Western Isles staff by email. The questions asked staff what they thought about the collaborative. 78 people sent back answers. People that had gone to the training found training on communication useful. 10

Most of the people had heard about the register of people with learning disabilities set up by the collaborative. Only some people had heard of the link workers. This may be because the collaborative was so new. Stand Up for Yourself Advocacy group Members of the group went to the Western Isles hospital to talk to staff about their needs. They talked about the importance of good communication. The group delivered some presentations to the NHS Board. The group were also involved in training people. 11

The group got together to talk about their health experiences and about the collaborative. The group asked for information that was easier to read. They wanted signs that were pictures. They wanted the signs in different colours to show them what hospital wards to go to. The group said the voices of people with learning disabilities were not being heard. They gave examples of some bad experiences of health care. They said that staff did not speak to them. They said that staff spoke to their carers or family members instead. Some of the group said that they had better experience since the start of the collaborative. One of the group members talked about how a dentist was really good at explaining what he was going to do. 12

Another group member was happy that a nurse spoke to her, not her mother. The group said that their experience was really positive. They said that they felt confident that they could bring up issues that they are concerned about. They said they could not have done this before. Most of the group didn t know how to speak for themselves. The research team spoke to other people with learning disabilities and carers. They wanted to make sure they spoke to people with all levels of learning disabilities all around the Western Isles. The people the research team spoke to had not heard about the collaborative. The research team found out that most people received good health care. But they said communication needed to be better. 13

They are good, but they don t explain what they are going to do. Some people said that they felt scared because they were unclear about what was happening. What has the collaborative achieved? The collaborative has made more people in the Western Isles more aware of people with learning disabilities and their needs. This is an important first step. The training was seen as very successful and important. All new staff will now receive this training. What are the recommendations of the report? Staff should get new training to keep their skills up to date. The work of the collaborative will be checked in the future to see what is working well. 14

Make the link worker role more formal and have a register of link workers. Make some of the work of the collaborative more formal. For example make sure easy read leaflets are given to service users. Then ask them if they are happy with the leaflets. Keep working with the Stand Up For Yourself advocacy group. It would be good to keep talking to the advocacy group about accessible signs and leaflets. Find out about services that are available for people with profound learning disabilities. This will help plan for future development. Have an event about the Western Isles experience to show best practice to other Health Boards. Make another report about the collaborative in 3 years time. This will give a clearer picture of how well it is working. 15