LeDeR Managing Deterioration Programme: 'Good Health, Good Lives' for people with a learning disability

They tested five tools to help social care staff identify signs of physical health deterioration. This partnership project helped to build up and establish new regional strategic relationships which will be of lasting benefit. The project concluded that all the tools were potentially useful and that some suited some situations better than others. See the final report below for full details. 

If you have a learning disability you are more than twice as likely to die earlier than the general population. Of those people with learning disabilities who died in 2021 in the Midlands, half of their deaths were avoidable.  

The national Learning from Life and Death Reviews of people with a learning disability and autistic people (LeDeR) programme is working to change this for the better by tackling some of the ways that people with a learning disability and autistic people are treated differently in the health and care system by national partners in ways that impacts negatively on their health and wellbeing.

Based on these findings, the national LeDeR team identified funding that enabled East and West Midlands ADASS, East and West Academic Health Science Networks, with four local councils and supported living providers in those areas to tackle this issue.  

The partners developed a pilot project to work with supported living providers and partners in the NHS to help social care staff to identify the signs that someone with a learning disability is deteriorating and work with NHS staff to get the person the care they need in this situation. 

The partners decided to test five tools to help social care staff identify signs of physical health deterioration.  

The tools tested were:  

1. My Resident
2. Good Health Good Lives 
3. Stop and Watch
4. Restore 2 mini
5. and Keeping Well, a new tool developed for the project for use in supported settings.

Approaches to recognising soft signs were also taught to social care staff like Prevention, Identification, Escalation, Response and Situation, Background, Assessment, Recommendation and Decision. 

They:

• developed an easy read guide about the project  
• undertook structured questionnaires with providers to understand their experiences of working with primary and secondary care when managing the physical health deterioration of a person with a learning disability 
• trained social care staff in the use of the tools  
• undertook structured questionnaires with primary care colleagues to understand the challenges they faced when receiving concerns escalated by social care staff  
• undertook a testing period of the tools with people living in supported living settings.

This partnership project helped to build up and establish new regional strategic relationships which will be of lasting benefit. 

Ninety-one people with a learning disability, 100 social care support workers, 10 general practices, community health teams and receptionists and West Midlands advocacy services were involved. 

Many social care staff felt that they weren’t listened to by clinical staff even though often they knew the person best and were identifying changes regularly. A key issue for the project was equipping social care staff with the skills, tools, and confidence to work with NHS staff to successfully present key information to them to quickly escalate the information that the person they support is deteriorating. 

Using the tools helped social care staff better articulate the concerns they were identifying, providing a formal approach they could use to present to clinical staff to influence them to take appropriate further action and help get the person the care they need.  

A provider said, “we are so excited to be part of this pilot – our staff are already good at picking up soft signs, but these tools help in formalising their concerns and we can share this with health professionals.” 

Developing shared reflective learning sessions between health and social care are helpful in developing communication, relationships and collaboration to improve the support to people with a learning disability. This will also support social care staff being viewed as equal partners in the detection of deterioration. 

Specific learning from primary care staff identified that patient flags could be useful in prioritising calls from social care staff and family carers, as well as developing specific templates for people with a learning disability to support an NHS consultation with someone with a learning disability.

The project group has been considering how to embed use of the tools and approach into business as usual across a wider footprint and how to extend the project to people living in the community, building on the learning from the pilot.  

Where there are concerns that the health of a person with a learning disability is deteriorating, clear escalation pathways can be jointly developed which are visible and accessible to staff working in social care settings.  

The group want to develop opportunities to embed escalation processes within the Annual Health Checks that are a requirement for all people with a learning disability. Collaborative approaches to improving access to annual health reviews, health action plans and protocols to support access by social care staff to over-the-counter medication could also be considered.  

The recommendations from the project report could also be reflected in specifications and contracts to improve the appropriate commissioning of services. 

• There was a great deal of learning from the different partners working together on this project and understanding each other’s roles and cultures better. 
• Social care staff were already using these approaches but did not have a formal approach for what they were doing. 
• Soft signs are more readily recognised by support workers who have a consistent, longer-term relationships with the person being supported 
• Longer term relationships with GPs promotes quality of interaction and response from social care staff. 
• There is very variable access geographically to specialist and mainstream services such as dental services (partly due to staff shortages, partly due to complexity of referral pathways.) 
• Supported living support staff feel undervalued in the hierarchy with health professionals. 
• Limited understanding of the legal basis of the support worker role can be problematic in health settings. Acknowledging the role of support staff as ‘family’ without legal footing, impacts on the way that they advocate for people with a learning disability. 
• Some care staff feel reluctant to provide homely remedies (for example aspirin, paracetamol, antihistamine). Care Quality Commission regulations permit the use of homely remedies if appropriate systems are in place. 

• The final report of the pilot project LeDeR managing deterioration programme Midlands region 2022
• The latest Partners in Care and Health briefing on LeDeR
• Further information about LeDeR can be found on the NHS website and you can read the Annual LeDeR report and Action from Learning report 2020/2021. 

Catherine Nolan

[email protected] 

Regional Lead People with Learning Disabilities and Autistic People West Midlands ADASS 

Ranjan Ravat 

[email protected]

Regional Lead learning disabilites and autism, East Midland