Supporting people with lifelong disabilities

Annual NHS Health Checks for people with a learning disability

People with a learning disability often have poorer physical and mental health than others and annual NHS health checks which aim to address this health inequality are carried out by GP practices.

In West Sussex 4,907 people with a learning disability aged 14 years and over are registered with a GP (a 2% increase from the previous year) and in 2022-23 76.4% of those people benefitted from an annual health check (68.5% 2021-22).

Employment

Being in suitable paid work can improve poor health and mental wellbeing. The ‘supported employment’ model has been used successfully for decades to support people with significant disabilities to secure and retain paid employment.

Supported Employment West Sussex is a partnership initiative in which Aldingbourne Trust WorkAid and Workability from Impact Initiatives have joined together to provide employment support to people with lifelong disabilities, physical and sensory issues, an acquired brain injury and those who are carers. 

There was an improvement in 2022-23, up from 1.09% in 2021-22 to 2.8% but we are still falling behind our target of 3.6%.

Learning from lived experience

In early 2023 we hosted a number of events for people with lived experience of adult social care, family and friend carers, representatives from the care market, and the voluntary and community sector, to consider what is needed for a new model of day care, employment and volunteering opportunities.  Feedback indicated that a community-based day support offer providing a range of local interventions would be welcome so that these opportunities can connect people to their local area whilst reducing travel. We also want to ensure that people are stimulated and challenged, feel safe and confident and that they can learn new skills.

Our long-standing Learning Disability and Autism Partnership Boards are important channels for people with lived experiences to share their views and opinions. Their feedback is taken forward in a number of ways, for example, through training developments and projects with partner organisations, such as Job Centre Plus or Time to Talk, or by sharing with County Council and NHS decision makers.

Other ways that people influence health and care support is through involvement in staff recruitment and training, being employed in local organisations and working as ‘quality checkers’ making recommendations for improvements and recognising good practice in local services.

Working with Lifelong Services providers

Whilst the whole social care market is challenged by the cost of living and workforce issues, we continue to see excellence in our provider services. 79% of care homes and 97% of supported living providers in West Sussex have been rated as either ‘Good’ or ‘Outstanding’ by the CQC. This is backed up by findings from external reviews which give plaudits to providers who have maintained placements despite a person’s needs increasing, and care staff providing a high level of advocacy and going the extra mile, including meeting end-of-life needs. 

Autism diagnosis and the neurodevelopmental programme

(Neurodevelopment refers to the brain’s development of pathways that influence our performance and functioning.)  Unprecedented increase in demand, complexity of people’s situations and workforce constraints, means that the waiting lists for an autism diagnosis is at an all-time high – over 10,000 people across Sussex. The neurodevelopmental programme which started in 2021, is developing a Sussex-wide plan for people of all ages to address workforce capacity and develop a sustainable care pathway. The programme is due to be completed in Spring 2024.

Supported Living

This service is designed to help people with a wide range of needs to retain their independence by being supported in their own home and where independent living is not possible, in places that feel like home.  People have their own tenancy and are responsible for their own bills and cost of living.

From November 2022 to January 2023 we funded 1.62% more supported living placements than the previous year with 1,187 people with lifelong disabilities or mental health conditions living in the community.

Learning disability dementia service   

The service, launched in Autumn 2022 and run by Sussex Partnership NHS Foundation Trust, carries out memory assessments and regular brain screening for people with Down’s Syndrome aged 30 years and over to identify early signs of dementia. It also undertakes memory assessments for older people with a learning disability who are experiencing signs and symptoms of dementia. The service provides support to people who receive a dementia diagnosis and to their carers.