Identifying early signs of worsening health in a person with a learning disability

Please note, this programme of work has been completed and is no longer being updated. The below information is provided for reference only. If you would like more information on this programme, please get in touch. 

Wessex PSC is working to implement a standardised common language for managing deterioration across all healthcare settings including the Learning Disability community.

Signs someone may be unwell and what should I do? (RESTORE2mini) 

A resource for carers of people with a Learning Disability across Wessex

The Signs someone may be unwell... (RESTORE2mini) tool encourages carers to look out for, and respond to, 'Soft Signs' of Deterioration in the people they are supporting. Using a simple question 'How are you today?' the card includes a series of prompts to support staff to consider possible 'soft signs' of deterioration.

Possible triggers include breathing difficulties; changes in appetite, mobility, consciousness or confused state; bowel or urinary tract problems.

Carers can then raise the alert and communicate their concerns using the SBARD communication process.

An exploration and evaluation of mechanisms to aid recognition of acute deterioration in people with learning disabilities: “What do I need to know?”

A team from Northumbria University ran a research study to investigate and evaluate the current use, the potential for future use and the impact of routine use of Early Warning Systems to identify acute deterioration in people with a learning disability. 

The study was designed as a qualitative approach to explore and evidence the lived experiences and knowledge of paid and unpaid carers with respect to the following topics: 

• Their ability to recognise the early signs of illness and deterioration in the condition of adults with a learning disability 
• Their experiences of escalating their concerns to get timely help and treatment 
• Their thoughts and opinions about the usefulness of such tools and education

A copy of the paper by Dr Jane Greaves, Professor Alison Steven, Julie Alderson and Dr Meaghan Grabrovaz (Northumbria University November 2021) can be downloaded from the resources tab on the right of this webpage.

RESTORE2 is a physical deterioration and escalation tool for care/nursing homes co-produced by HIOW ICB and Wessex Patient Safety Collaborative and based on nationally recognised methodologies including early recognition (Soft Signs), the national early warning score (NEWS2) and structured communications (SBARD). 

RESTORE2mini was subsequently published, without the NEWS2 component, for care settings preferring to use a "Soft Signs" approach as an early sign of unwellness. The "Signs someone may be unwell and what should I do?" (RESTORE2mini) version of the tool was developed for use specifically in the Learning Disability Community. 

A project team consisting of members from NHS England, NHS Improvement, Health Education England, Wessex PSC, West of England PSC, HIOW ICB and a number of Learning Disability charities and experts by experience developed the "Signs someone may be unwell and what should I do?" (RESTORE2mini) tool and associated training materials.

Further information about this project can be obtained via the "Contact Us" link at the bottom of this page.

RESTORE2mini film by Inclusion Gloucestershire

During covid-19, care home and those in supported accommodation staff find it difficult and challenging to identify possible deterioration in some residents with a learning disability.

Some people with a learning disability may have unusual responses to pain and discomfort – RESTORE2mini is all about recognising a person’s “unique wellness” which enables us to recognise equally unique signs of health deterioration.

This video produced by care organisation Inclusion Gloucestershire highlights the benefits of RESTORE2mini, including a patient experience story.

Learning Disabilities Mortality Review (LeDeR) programme have recommended that NEWS2, as used in tools such as RESTORE2 , is adapted and then adopted as a means to capture baseline and soft signs of acute deterioration in physical health for people with learning disabilities by:

• Involving people with learning disabilities, their families and professional organisations.
• Disseminating for use across acute, primary and community settings.

The LeDeR annual reports of the English Learning Disabilities Mortality Review can be accessed here. The 2019 report can be downloaded from the resources tab on the right of this webpage. 

Online video based training for carers (HEE)

Health Innovation Wessex and Health Innovation West of England have collaborated with HIOW ICB and Health Education England to produce a series of free videos and e-learning materials to support staff working in care homes to care for residents who are at risk of deterioration.

The Learning Disability project team subsequently collaborated to re-film 7 of these videos specifically to support carers of people with a learning disability.

All videos are short (around 3 minutes each) and each focusses on specific aspects of care. They can be accessed via our Training Resources webpage.

Soft Signs

Early signs of physical “unwellness” can be recognised intuitively by carers as evidenced by staff saying “I know something is wrong, I just don’t know what”. Even people without training, but who are familiar with someone’s usual behaviour and habits, can often sense a problem resulting in them reporting that the relative, child or person in their care “just isn’t themselves”.

There is some evidence to suggest that it is possible to identify physical deterioration before hard physiological signs are present with one study by Boockark et al finding that “Nursing assistants' documentation of signs of illness preceded chart documentation by an average of 5 days.” 

A short video discussing how "Sensing someone you care for is seriously unwell and spotting tell tale 'soft signs' could save their life" is shown as the Featured Video on this page.

One of the videos listed on the HEE Training Resources (see above) addresses the topic of Soft Signs of deterioration and there is also a version for carers of people with a learning disability. 

More information about the use of Soft Signs in Health Care, including a paper written by Geoff Cooper, together with three Wessex based examples of their use is provided on our

Using Soft Signs to Identify early indications of Physical Deterioration webpage.

Resources and Training materials

The "Signs someone may be unwell and what should I do?" (RESTORE2mini) tool can be obtained from HIOW ICB. 

Copies of the RESTORE2 and RESTORE2mini tools plus associated resources and implementation materials can be downloaded from the HIOW ICB website although the ICB need to be contacted directly for the Learning Disability version at this time.

The HIOW ICB website contains full information about using RESTORE2 and ordering printed copies of any materials. 

Copies of the full RESTORE2 Roll Out Workbook in pdf format as well as a version optimised for android and iOS tablets can be downloaded from the resources tab on the right hand side of this page.

A copy of the slide deck for trainers implementing the "Signs someone may be unwell and what should I do?" (RESTORE2mini) tool can also be downloaded in ppt or pdf format from the resources tab on the right hand side of this page.

SBARD Communication Tool (WPSC)

SBAR and SBARD are easy to use, structured forms of communication that enables information to be transferred accurately between individuals.

SBARD (SBAR+D) is not copyrighted and Wessex PSC have developed an open version in Word format to assist Carers wanting either a generic form or a template that they can customise for local use. This generic SBARD Communication Tool can be downloaded from the resources tab on the right hand side of this page.

More information about our work relating to SBARD and links to an NHS training video can be found on our SBARD webpage.

RESTORE2 in Residential Care (A Case Study)

Fessey House is a residential care home in Swindon for people with dementia, learning disabilities and other enhanced needs. Local GP, Chris Turner and Senior Community Nurse, Soghra Bi have been supporting Fessey House to introduce RESTORE2, in collaboration with the local ICB, to help staff more quickly identify when residents’ health is deteriorating.

Here Chris and Soghra share how staff at Fessey House have been supported by the Health Innovation West of England's online RESTORE2 training, and how the residents are benefiting.

Other resources

Help at home from a carer (NHS)

NHS website about Homecare / Domiciliary Care, what it is and how to access it.

West of England Learning Disabilities Collaborative

The West of England Learning Disabilities Collaborative (LDC) was established in early 2019 to focus on three key priority areas:

• Using the National Early Warning Score 2 (NEWS2) and soft-signs tools to support early identification of physical deterioration
• Increasing uptake and standardising the quality of annual health checks
• Increasing uptake of flu vaccination, including promoting the nasal vaccine as a reasonable adjustment for people with a severe needle phobia

If you have any questions about the Wessex Patient Safety Collaborative's Learning Disability workstream or any other aspects of the Wessex PSC, please contact us via the link below: