Learning disability (LD) is defined as the presence of:
- a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence, often defined as an IQ level of 70 or less), with
- a reduced ability to cope independently (impaired social functioning);
- which started before adulthood, with a lasting effect on development.
Adults with learning disabilities are one of the most vulnerable groups in society, experiencing health inequalities, social exclusion and stigmatisation. In general, adults with learning disabilities have greater and more complex health needs than the general population, and often these needs are not identified or treated. Adults with learning disabilities may need extensive support from family, informal carers or paid care staff to live independently or safely. Social care for adults with learning disabilities is one of the highest areas of spending for local authorities at a time when funding to local authorities is reducing.
Life expectancy of this group is shorter than the general population, although this has increased recently. In addition, a number of national reports have highlighted that adults with learning disabilities often experience barriers to accessing healthcare services and experience poor levels of care. Adults with learning disabilities are more likely to die from a preventable cause than the general population. Following the, ‘Confidential Inquiry into Deaths of People with Learning Disability’ in the Bristol area, a national mechanism for monitoring deaths is being developed by NHS England with local partners, and will be implemented by CCGs from 2017.
The scandal at Winterbourne View highlighted that some people with Learning Disability (LD), and often with autism spectrum conditions, were remaining for long periods in specialist hospital care, often far from home. The ‘Transforming Care’ programme looks to redress this at local level through a programme of ‘Care and Treatment Reviews’ with those individuals affected. This work has prompted investigation into ways of providing more responsive, bespoke care to meet individual needs, enabling people to exercise choice and control and how best to prevent needs escalating to a degree that might require hospitalisation.
For the wider group of people with LD, the Equality Act 2010 requires that ‘reasonable adjustments’ be made across services to enable access for this group. Public sector organisations are required to ‘advance equality of opportunity’, ‘eliminate discrimination, harassment and victimisation’ and ‘foster good relations’ with regard to people with learning disability and the wider population.
Nottingham has developed mechanisms to understand the local population with learning disability, and has jointly undertaken a health and social care self-assessment overseen by ADASS and Public Health England. This considers not only health and social care needs but also wider social inclusion, for example in leisure and transport. SPLAT, the Learning Disability Partnership Board has evolved to have a structure that enables engagement and inclusion of people with LD and their carers in the governance process of LD locally, including through the self-assessment.
A vibrant and creative voluntary sector supports novel ways to engage and include people with learning disabilities. In many areas, Nottingham fares well for healthcare and social inclusion, however against national comparators the number of people with LD in paid work is very low and warrants additional focus. A recent strategic commissioning review has identified that the use of residential care in Nottingham is high in comparison to other areas and consideration is being given to exploring greater use of supported living options.
Unmet needs and gaps
- Although the number of people with LD having an annual health check has increased, the proportion of people with LD having a health check at GP practices is variable and many people do not receive a full check or the associated health action plan.
- In recent years, a good infrastructure of liaison services within primary care and secondary acute care that support improvements in reasonable adjustments for people with LD has been established and should be maintained. The hospital liaison team has seen an increase in demand for their services over time.
- The proportion of people with LD who are obesity and overweight is higher than the general population.
- As illustrated by the Confidential Inquiry there are likely to be unmet health needs and preventable early deaths in people with LD.
- There is a risk that concentration of activity on Transforming Care could limit developments to improve the health of the wider group of people with LD.
Accommodation and Support
- There is higher use of residential care in Nottingham City and low use of supported living.
- The Transforming Care agenda has demonstrated challenges in identifying flexible, skilled provision in the market for those whose behaviour challenges.
- There is likely to be a rise in demand for services due to demographic changes but also due to changes in family structure and changing expectations.
- There are low levels of employment in people with LD.
- The LD Communication strategy requires refreshing in the light of the new legislation, and more services need to proactively develop and use easy read materials.
- Level of social vulnerability cannot be predicted by the level of LD. People with mild LD may be at increased risk of social vulnerability, such as hate crime, homelessness, exploitation or substance misuse, as well as experiencing the impact of welfare reform.
Recommendations for or consideration by commissioners
- Ensure actions across the Health and Wellbeing Strategy recognise the needs of people with learning disabilities.
- Partnership arrangements need to be established with NHS England to improve uptake and monitoring of the annual health check programme.
- Ensure health and care services are joined-up to support people with a combination of physical health needs and LD e.g. diabetes, Cancer, asthma, end of life care, obstetric care.
- As a result of SEND reforms, specifically the increase in the age supported up to 25 years, and changes to the health check Programme, now offered from age 14 years and upwards, commissioners and providers should work together to ensure that healthcare is joined up during the transition period.
- Ensure health promotion and prevention initiatives are actively promoted and inclusive for people with LD, and those supporting them, particularly regarding weight management, healthy eating and physical activity.
- All relevant services should cooperate with NHS England and local Safeguarding Boards in plans for the Learning Disabilities Mortality Review Programme.
- The infrastructure that supports people to access mainstream health services should be maintained and consideration given to whether capacity there is sufficient in the hospital LD liaison service.
- Continue to monitor the overall picture of people with LD in Nottingham through GP data audit including the Miquest audit.
- Public health, the CCG and secondary care should work together to better understand use of the urgent care system by people with LD
Accommodation, care and support
- As the life expectancy of people with LD increases consideration should be given to the aging population of carers and adults with LD including preventative early intervention approaches.
- Commissioners should consider a strategic approach to reducing dependence on residential care for people with LD and develop a vision for increased use of more supported living options, with increased choice and independence.
- Continue to explore person centred solutions for the small number of individuals in long term hospital care as part of the Transforming Care agenda.
- Ensure the aspirations of the Care Act 2014, in terms of promoting wellbeing and taking a preventative approach, are embedded into the care system for people with LD.
- Establish a local system for predicting future needs of people with LD and anticipated demand for services based on the current needs of both children and adults.
- Commissioners should ensure people with LD are included in initiatives to increase quality employment in disabled people.
- Ensure the voice of people with LD are heard through the LD Partnership Board (SPLAT) process, and ensure this is inclusive of BME communities and those in residential care settings.
- Take opportunities to explore ways of including a ‘whole life disability’ approach where possible recognising that LD is a lifelong disability.
- Champion the social model of disability with partners, with a strong emphasis of people with LD (and their carers) as a specific group under the Equality Act 2010.
- Ensure learning and good practice from Transforming Care agenda informs the planning of care and support for the wider LD population not just those whose needs have resulted historically in prolonged hospitalisation.
- Improve the knowledge of the needs of Nottingham’s diverse population including quickly the communities that may not be picked up through routine ethnicity monitoring such as Polish, Rumanian or Roma communities identified in monitoring as other European.
- Ensure initiatives in Nottingham to reduce financial hardship are inclusive of people with LD.
- Explore the impact of the Accessible Information Standard, which all NHS care and or publicly funded adult social care services have a duty to implement since August 2016 for people with a learning disability in Nottingham.