Executive summary
This report explores the insights from people with a learning disability living in South West London. Complied to shape future engagement and to inform the learning disability conference, taking place in June.
Having reviewed over 15 sources of insight, the following findings highlight key issues for people with a learning disability:
Experiences of booking GP appointments – Some people with a learning disability reported difficulties booking GP appointments and felt the time allocated was too short. There were concerns that healthcare professionals sometimes addressed carers instead of speaking directly to the individual. A few felt that medication was being prescribed to manage behaviour rather than addressing underlying health needs. However, there were examples of positive changes too, such as Sutton GP practices introducing the Hidden Disabilities Sunflower Scheme, which has helped make booking appointments and maintaining continuity of care easier for some.
Difficulty navigating the health and care system – Feedback from the conference and wider engagement suggested that some people with a learning disability and their families find the health and care system confusing. There were reports of uncertainty about which organisations provide different services and who to contact for support. In particular, young people were described as falling through gaps between services, highlighting the need for better coordination and clearer communication.
Digital exclusion for people with a learning disability – Many people expressed a desire to use technology more, but only a minority felt confident doing so independently. Barriers such as limited access to the internet, affordability issues, and the need for digital support were commonly reported. Feedback suggested that without appropriate help, growing reliance on digital services could risk widening inequalities for those with learning disabilities.
The needs of people with a learning disability are not always well understood across health services. Feedback from participants highlighted that some health professionals do not always fully understand or accommodate the specific needs of people with a learning disability. In both hospital and primary care settings, people reported that staff sometimes overlooked individual communication styles, rushed explanations, or did not take the time to ensure patients felt comfortable and informed. A lack of awareness about sensory sensitivities, particularly for autistic individuals, was also noted. While there were examples of kind and supportive staff, the experiences shared suggest that more consistent training and understanding are needed across the health system to ensure people with a learning disability are treated with dignity, respect, and appropriate support.
Perceived lack of training and awareness by healthcare services – Some participants shared experiences where they felt healthcare staff lacked the training to communicate effectively with people with a learning disability. Issues included staff not recognising different communication needs, speaking too quickly, or responding poorly to behaviours they did not understand. Suggestions for improvement included clearer communication, more sensory-friendly environments, and greater use of tools like hospital passports or One Page Profiles.
Challenges in social care and welfare – A number of individuals reported that the housing register process was hard to navigate and that rising living costs were making supported living less affordable. Some felt anxious about living independently and managing financial responsibilities. While some support services were praised—such as Nickel Support and Mencap—there were calls for more accessible information, greater flexibility in care plans, and additional help with funding arrangements.
Need for increased emotional support for carers and parents – Carers and parents who took part in the engagement said they often felt they needed more emotional support. Some shared that caring could feel isolating or overwhelming, particularly as their loved ones’ needs changed over time. Feedback pointed to a need for better access to peer support, counselling, and family-focused services.
Lack of local activities – Some people found it difficult to access information about local activities, and high costs were often mentioned as a barrier to taking part. A few also said they would need more support to try new things. Despite this, there were positive examples of inclusive, free activities such as cricket sessions and local sports groups, which were seen as valuable opportunities for socialising and staying active.
More supportive employment opportunities are needed – Many individuals shared positive experiences of supported internships, which helped them build confidence, teamwork, and practical skills. However, finding paid employment was described as challenging, with barriers including limited inclusive hiring practices and a lack of clear information about available employment support. Feedback suggested more targeted support and clearer pathways would help people with a learning disability who want to work or explore self-employment.
Introduction
Discussions at the Sutton Health and Care Executive and Learning Disabilities Programme Board highlighted the priority to focus on the experiences and insight of people with a learning disability. The analysis of engagement collated across South West London will inform future work programmes, including Sutton’s next Learning Disability Conference which will be held in June 2025. This analysis highlights the challenges, barriers and overall insights surrounding health and care and summarises findings into key themes.
Background
Evidence shows that people with a learning disability are more likely to experience social, economic, and health inequalities. Factors such as poor diet, low levels of physical activity, and social isolation contribute to increased health risks. Additionally, access to services that support daily living, including accessible public transport, supported housing, and training opportunities, play a major role in their quality of life and overall health outcomes.
In Sutton, the prevalence of people with a learning disability is slightly higher than the national average, at 0.6% compared to 0.5% 13. Projections indicate that Sutton will see an annual increase of 46 people with a learning disability over the next decade, totalling approximately 460 individuals. Of these, an estimated 90 people will have moderate to severe learning disabilities and will require the support from services. This reflects a 17% increase in demand, exceeding the national average increase of 10% by 2030 13.
Data highlights disparities in service use among people with a learning disability. They are more likely to visit A&E for conditions that could be treated elsewhere and are at higher risk of admission to mental health hospitals. Yearly data has shown a rise in A&E attendance for seizures among individuals with learning disabilities. Currently, 1,098 people in Sutton are registered with their GP as having a learning disability, although it is recognised that some individuals remain unregistered 14.
Methodological approach
This report has examined the insights from a variety of South West London wide publications by local authorities, voluntary and community sector organisations and NHS Place-based community engagement teams. Providing a wider perspective of lived experiences for those with learning disabilities across boroughs. This data spans various timeframes, with engagement conducted between 2021 and 2024.
This report also includes insight from Sutton’s Learning Disabilities Conference held in March 2024. The conference was organised in partnership with NHS South West London Integrated Care System and Sutton Council and involved local organisations including Advocacy for All, Sutton Mencap, Orchard Hill College, Rosswood Gardens Care Home and Nickel Support. Discussions at the conference supported the identification of key areas for action and improvement to enhance support for people with a learning disability in the borough.
This report sought to identify key challenges, barriers, and experiences of support for those with learning disabilities. This includes findings regarding access to health and care services, housing and employment support and digital exclusion.
Limitations
There are noted limitations regarding the analysis of further insight which was gathered from different boroughs in South West London with boroughs including Richmond, Wandsworth, Sutton, Merton and Croydon. This makes it difficult to generalise findings as each borough have varying socio-economic inequalities and learning disability support services.
Some of the insight analysed across South West London was conducted between the timeframes of 2021 and 2024. This makes it difficult to compare insight as factors including the Covid-19 pandemic may have influenced findings.
Key themes emerging from the 2024 March learning disability conference
Barriers to accessing GP services
Access to health services remains an issue for people with a learning disability . many find it difficult to book GP appointments and find the time allocated is often too short and want more time with their GP. There is also concern that healthcare professionals sometimes speak to carers rather than directly to the individual. Additionally, some people feel that medication is being prescribed to manage behaviour rather than addressing the root cause of their health needs. Despite difficulties, there have been positive developments, such as the Hidden Disabilities Sunflower Scheme being introduced in all Sutton GP practices, making it easier for people with a learning disability to book face-to-face appointments. Some individuals have benefited from improved continuity of care, ensuring they see the same healthcare professional.
Employment opportunities
Employment and supported internships have had a positive impact on many people with a learning disability. People shared their success stories from their supported internships, where they developed practical skills such as working in retail, updating CVs, and improving teamwork and confidence. However, barriers to employment were reported, including a lack of understanding among employers about inclusivity, young people falling through the gaps between services, and confusion about which organisation provides which type of employment support.
Housing and social care
Some people were noted to struggle navigating the housing register process and others felt worried about living alone. The rising cost of living and higher wage requirements have also made supported living more expensive. However, support services have been beneficial in helping people manage paperwork and bills. There is a need for more information about Shared Lives placements, and additional emotional support should be available for carers and parents.
In social care, difficulties in contacting social workers and understanding funding arrangements were highlighted as challenges. Many people felt that the language used in social care documents was too complicated. They also felt that people needed longer care and their needs changed. It was noted that some support plans are working well, including voluntary self-referrals, help with direct payments via Nickel Support, and family support through Mencap.
Inclusive activities and community support
Further development was noted regarding community inclusion and leisure opportunities. Many people found it difficult to access information about local services, and the cost of activities was noted as a barrier. Some individuals reported the need of additional support to try new things. However, free activities such as cricket sessions and the development of a sports inclusion group were welcomed.
Barriers to mobility and accessing transport
Transport and accessibility were reported to highlight ongoing difficulties, particularly with bus drivers not waiting for people with disabilities, uneven footways, and a lack of accessible information about rail strikes. Concerns about the town centre and public spaces were also raised. Issues include a lack of carer parking, accessibility concerns at the new college location, and the general anxiety change can bring.
The importance of continued engagement
The importance of engaging with those with learning disabilities was heard during the conference. Feedback highlighted that 100% of people felt heard, reflecting on the importance and value of engaging with this community.
Key themes emerging from South West London engagement
The insight below highlights findings of publications by local authorities, voluntary and community sector organisations and NHS Place-based community engagement teams.
Digital exclusion
The move to online services could amplify health inequalities by providing digital barriers to service access. Richmond’s survey engagement for ‘The Big Plan’ 2 found that despite 63% of respondents wanting to use technology more, only 23% of those with learning disabilities were able to use technology independently. Barriers included issues with accessing the internet both financially and competency using the internet. The need for support using technology was also highlighted. In Merton, digital exclusion was reported as a concern following the impact of Covid-19 on people with a learning disability or autism and their carers 3.
Experiences of accessing hospital services
NHS SWL held focus groups with people with a learning disability and their families to inform the Joint Forward Plan 8. In Kingston, insight highlighted the need for awareness training across the NHS system to ensure clear communication with people with a learning disability. Some participants had poor experiences of A&E. They suggested staff did not always understand how people felt and felt they could respond inappropriately to behaviour they perceived as challenging or difficult. One participant suggested more needed to be done to accommodate people with autism who may struggle with sensory overload in the hospital environment 8. They wanted healthcare professionals to slow down and explain things clearly, recognise people’s communication and understanding methods may vary, and be open to questions that might seem odd, or unrelated.
Kingston Hospital Trust held a listening event to help improve the experiences of people with a learning disability 9. Participants highlighted good medical treatment and friendly staff as positive experiences. They appreciated parents and carers being able to stay with patients who had a learning disability. The concerns mentioned included not being told about the reasons for tests or the results. Information such as signage and letters, were not always accessible. Friendly staff at the entrance could help with finding their way and provide reassurance. They suggested information in letters needed to be in large print, with pictures, including alongside the names of the staff treating them. They reported the hospital environment can be stressful for people with a learning disability. It is particularly stressful if they need tests at different hospitals. To make it easier for staff to meet their needs, participants wanted staff to read their hospital passport or their ‘One Page Profile’.
More supportive employment
A report by the Carers Trust highlighted that people with a learning disability and autism enjoyed employment 4. Most people aspired to have jobs and careers, with some wanting to start their own business 5. There is a preference to work for 20 hours or less per week, with the need for employers to give support and feedback about how well they are doing. Kingston Health and Care Plan engagement suggested the need to focus on care services for those with learning disabilities in adult life including support for housing, obtaining employment, and ensuring independence 6. The NHS SWL Joint Forward Plan reported that more employment support and targeted communications is needed for young people, and for carers and people with a learning disability who want to work 12.
Next steps
This report will be considered by the Sutton Health and Care Executive and Learning Disabilities Programme Board.
The report highlights key factors which contribute to poorer experience of people with a learning disability and highlights mechanisms which might improve experience and access of healthcare services. Including, a need for improved communication and training within healthcare settings, more supportive and inclusive employment opportunities and access to accessible information.
References
- NHS SWL & Sutton Council (2024) Sutton’s Learning Disability Conference.
- The Working Together Group and the London Borough of Richmond-upon-Thames (2021) The Big Plan.
- Public Health LBM and Mencap Merton (2021) Impacts of Covid 19 on people with a learning disability or autism and their carers/ Merton Mencap South West London ICP (2021) Mind the Gap phase 1 report .
- Carers Trust (2022) Working for Carers evaluation .
- John and Catley (2021) The big conversation.
- SWLHCP (2021) Refresh of Kingston’s Health and Care Plan 2022 -2024 Patient and public engagement report .
- The Working Together Group and the London Borough of Richmond-upon-Thames (2021) The B Plan .
- NHS SWL (2023) Joint Forward Plan: Our engagement with people and communities
- Kingston Hospital Trust (2023) Learning Disability listening event update .
- Kingston Hospital Trust (2023) Outputs from workshops on Accessible Information Quality Standard 2023-24 .
- St George’s Hospital (2023) Patient Experience and Partnership Bi-Annual Report April to September 2023.
- NHS SWL (2023) Our five-year plan for the NHS in South West London 2023-2028.
- Sutton Council & NHS SWL (2022) Learning Disability Strategy (2022 – 2027).
- Sutton Council (2025) Action group highlight report January 2025.
- Sutton’s Learning Disability Conference