Health inequalities for people with learning disabilities

People with a learning disability have poorer physical and mental health than the general population and die younger, with many of those deaths being avoidable. Good access to primary care and annual health checks are key in tackling these disparities.

Resources for healthcare professionals

We recognise all the people who work in Primary Care for the important service they provide, often under difficult conditions.  There are small but important changes that can be made to support people with a learning disability. These are called reasonable adjustments.  We have broken some of these down below under four headings: Communication, Easy Read, Appointments, Environment, and Practical Tips.

Communication

  • Use simple, accessible language and avoid medical jargon which may be harder for people to understand
  • Follow the pace of the person you are communicating with and, if you are not sure, ensure you are being understood
  • Use visual prompts to facilitate communication
  • Agree the best way to communicate with your patient outside of their appointments (telephone call, email, text message, et al)

Easy Read

  • Use visual prompts, bigger text, bullet points and keep writing to a minimum
  • Provide easy read versions of documents and communications you are sharing with a person with learning disabilities, such as forms, appointment letters and leaflets

Appointments

  • Familiarise yourself with your patient’s preferences and needs, and aim to be as flexible as possible
  • You may want to offer your patient a longer appointment during a quieter time
  • Ensure your patient is informed of any delays and / or changes to their appointment
  • Continuity of care and familiarity are key. Always aim to offer appointments with a healthcare professional the person knows well
  • Ask the person if they want to bring someone they know well at the appointment, such as a family member, carer or support worker. They may also want to bring personal items to help them feel more at ease

Environment

  • Consider the surgery’s environment and the patient’s needs. They may need support and extra signposting to move around the surgery and use facilities, but they may feel too ashamed or nervous to ask
  • Equipment used should consider the extra needs of people with a learning disability, which may also be physical

Practical tips

  • Ask the Community Team for People with Learning Disability in your area for support – they may be able to help you with reasonable adjustments
  • Consider having a learning disability champion at your practice and encourage staff to undertake training in this area
  • Keep records of each person’s preferred adjustments and ensure these are added to their digital record

The resources below can help you to make the adjustments needed to support people with a learning disability using Primary Care services.

The Surrey County Council Learning Disability and Autism Hub health pages have information, toolkits, and resources to help people stay healthy and well. This includes easy read documents that can help people to prepare for their annual health check, a care passport that can be used to tell people about their needs and factsheets to help people get ready for a visit or stay in hospital.

Together we can break down barriers and enable people with a learning disability to live healthy, fulfilling lives.

Project overview – Health inequalities for people with learning disabilities

People with a learning disability tend to have worse physical and mental health than the general population. On average, the life expectancy for someone with a learning disability is 27 years shorter for women and girls and 23 years shorter for men and boys (Learning Disabilities Mortality Review, 2019). Good quality healthcare and effective access to Primary Care services are key to tackle such inequalities.

As some health problems experienced by people with a learning disability are simple to treat once diagnosed, a GP can often prevent a serious health condition with early identification. To this effect, an Annual Health Check is offered to anyone aged 14 or over who is on their GP’s learning disability register. This tool allows the person with a learning disability to have a free Annual Health Check once a year to help them stay well, detect conditions at an early stage, and ensure they get the right care at the right time.

Despite the introduction of Annual Health Checks and widespread efforts of the Healthcare community to address health inequalities among people with learning disability, issues and barriers to accessing care remain.

As part of the work to improve the health and care services offered to residents, Surrey Heartlands Health and Care Partnership (SHHCP) carried out a research project looking at the barriers in accessing Primary Care for people with a learning disability and their families, with the resulting insights informing the production of an animated video aimed to raise awareness of health inequalities for this group, especially for professionals working in Primary Care.

In this study, Researchers from Surrey Heartlands partnered with The Sunnybank Trust, a Surrey-based learning disability charity, to explore, through accounts of people with a learning disability and their families, what barriers to accessing Primary Care they have faced, specifically drawing out the experiences of patients around Annual Health Checks.

The short film produced off the back of this project offers a starting point for action and discussion around the positive changes that can be made to improve access to Primary Care, and address health inequalities for people with learning disabilities. The project features the voices and real-life experiences of those with a learning disability, echoing the participation principle of “Nothing about us, without us”.

Approach and methodology used

  1. Phase 1 – An initial phase of desk research was carried out to address any existing gaps in knowledge about the barriers people with a learning disability face and why such inequalities may arise. Focus was given to the low uptake of Annual Health Checks. Take a look at research report.
  2. Phase 2 – This included stakeholder interviews with Primary Care staff, such as practice managers, GPs, practice nurses and receptionists, to explore their experience and perspectives supporting people with a learning disability. The insights gathered have then be collated with the findings from the desk research and incorporated into engagement materials used for interviewing people with a learning disability.  
  3. Phase 3 – A key phase of peer-led engagement in collaboration with The Sunnybank Trust. This aimed to uncover any issues, such as any personal experiences of enablers or barriers to accessing the Annual Health Check, by hearing directly from real-life experience of people with a learning disability. Research was conducted primarily in Surrey but perspectives from people in different areas (South London, North Yorkshire) have also been collected.
  4. Phase 4 – Following a phase of analysis of the insights emerged from the peer-led engagement, Researchers revisited a selected number of participants for in-depth interviews to discuss, in detail, their specific experiences regarding the themes identified in the analysis. These interviews have been audio recorded to inform the final phase of the project.
  5. Phase 5 – The production company Strange Beast worked with the Research team to create an animated video with verbatim audio clips from the interviews in Phase 4. This brought to life the stories people shared with the Researchers in a way that is engaging, empowering and accessible.
  6. Phase 6 – This phase will follow the launch of the animation and its dissemination to GP practices. We want to work collaboratively with the Primary Care community to understand their experiences and suggestions, and support them in making positive changes.

Contact us

If you’d like to know more about this project or wish to talk to us about your experience working in Primary Care and supporting people with learning disabilities, do get in touch. We’d love to hear from you with any feedback and thoughts you may have.

Silvia Molino, Research Officer:  silvia.molino@surreycc.gov.uk

Rich Stockley, Head of Research:  rich.stockley@nhs.net

Lucy Dixon, Research Strategic Lead:  Lucy.Dixon@surreycc.gov.uk