What is a learning disability?
A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.
People with learning disabilities are among the most vulnerable and socially excluded in our society. It is estimated that there are approximately 20/1,000 people with mild learning disabilities and 3-4/1,000 with severe and profound learning disabilities in the UK.
Over the past three decades, almost all the long-stays in hospital for people with learning disabilities have closed and virtually all people with learning disabilities are now living in the community and depend on general practice for their primary care needs.
There is often much confusion between what is a learning disability or a learning difficulty.
Someone must meet all 3 of these criteria for a learning disability diagnosis
- Significant impairments in intellectual functioning (IQ below 70)
- Significant impairment of social or adaptive reasoning. The person requires support to achieve their survival needs i.e. eating, drinking, planning, appropriate clothing for weather etc. and with social problem solving and reasoning
- Impairment of onset before 14 years old.
What is not a learning disability?
- It is not a mental illness
- It is not Autism or ADHD in isolation. Autism is sometimes mistaken as a learning disability. Autism affects a person with their social interaction, communication, interests and behavior. Someone with Autism can have a learning disability but not always.
- A person can have a learning difficulties on a scale might have a mild learning difficulty or a severe learning difficulty.
- A person with an IQ score that falls slightly above 70 would be deemed to have a learning difficulty
- The person may have a specific difficulty processing certain types of information i.e. numbers (dyscalculia), reading and writing (dyslexia), dyspraxia. These conditions are specific learning difficulties.
- Blindness or deafness in isolation is not a learning disability. Although people with a learning disability can have, in addition to their learning disability diagnosis, have loss of hearing and/or sight)
Better working to support people with learning disabilities
Across Surrey we are working towards greater integration of health and social care for people with learning disabilities, in order to improve the service they receive.
This will mean creating a single team across Surrey County Council and the NHS, with staff receiving information and training on supporting people with a learning disability and/or autism and it will be a contractual requirement that services are able to accommodate their needs.
One of the key aims of our work is to ensure that more people can live in the community, with the right support, and closer to home.
To help achieve this, we have our county-wide Learning Disability Partnership Board, a county-wide Autism Partnership Board and the Learning Disability and Autism Programme Delivery Board.
We are also committed to service user and carer engagement and this is done through our local Valuing People groups:
- Surrey’s Learning Disability Partnership Board, Autism Partnership Board and Local Valuing People Groups
Surrey Heartlands CCG is working hard to make sure that fewer people with learning disabilities and/or autism will need to go into hospital for their care by improving services in the community.
We have plans in place for the discharge from all CCG beds for adults with learning disabilities and/or autism and, where people do need to stay in hospital, we will work to ensure their care is the best it can be so they can be discharged as soon as possible.
We have a small local Forensic community team (FIND) for people who have forensic support needs with a learning disability and/or autism and we are currently in discussion with our local providers with regards to providing settled accommodation and support for people with these needs.
We are also working in partnership with health, social care and our provider partners to:
- Develop discharge pathways and community alternatives to hospital stays.
- Carry out Care (Education) and Treatment Reviews (CTRS and CETRS) to ensure that all those involved in a person’s care and treatment are acting to ensure that the person can be discharged from hospital as soon as they are well enough to leave.
- Conduct eight week visits for all adults and six week visits for all children and young people in out-of-area inpatient settings to ensure they benefit from increased focus on their care.
- Maintain the quality of our learning disability and autism inpatient facilities. We will be working with Experts by Experience service users and carers to check the quality of our local services.
There is further information available on the following links:
- Supporting people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition
- Model Service Specifications to support the Transforming Care work
- My Care and Treatment Review
Acute liaison and reasonable adjustments
When people are ill and need to go into hospital they may find it difficult to explain their symptoms. They may not be comfortable with the hospital environment and as a result may not receive the care they need.
Surrey Heartlands CCG is working in partnership with all our local hospital trusts in order to develop services which provide reasonable adjustments to help people with learning disabilities receive high-quality care.
Examples include making sure that every acute hospital has both adult and paediatric learning disability liaison nurses.
Please check with your local trust to see what services we have put in place to help you and your family receive the best care. The Surrey and Borders website has the relevant contact details.
Annual Health Checks
People with a learning disability often have poorer physical and mental health than other people. An annual health check can improve people’s health by spotting problems earlier.
All people with a learning disability are entitled to be registered on the GP learning disability register. From age 14 + they will be offered an enhanced annual health check.
Our new Primary Care Networks will be working hard to:
- Increase the numbers of people with learning Disabilities having an annual flu vaccination.
- Increase the numbers of people having the enhanced health check.
- Reduce the use of unnecessary medication ( STOMP)
Learning from lives and deaths: People with a learning disability and autistic people (LeDeR)
Surrey Heartlands CCG is part of the national Learning from lives and deaths - People with a learning disability and autistic people (LeDeR) programme. The LeDeR programme is commissioned by NHS England.
The aim of the programme is to support local areas to review the deaths of people with learning disabilities (aged four years and above) and autistic people (aged 18 years old and over), identify learning from those deaths, and ensure services are developed in order to address any learning from the review.
For more information on the programme please visit the NHS England LeDeR website.
Anyone can report the death of a person with a learning disability or an autistic person to the LeDeR programme. All deaths of people with learning disabilities who are aged four years and above should be reported and deaths of autistic people (with or without a learning disability) aged 18 years old and above. Deaths can be reported online via NHS England.
LeDeR Annual Report
You can read the latest LeDeR Annual Report to get an overview of the LeDeR programme and how this has been implemented in our local area. It provides an overview of the number of deaths that have been reported to LeDeR for these areas and summaries the learning that has come from the completed reviews.
The new national LeDeR policy outlines local delivery expectations required from each clinical commissioning group (CCG) and then, from July 2022, Integrated Care Systems (ICSs).
One key expectation is to have a three-year LeDeR strategy demonstrating how the CCG then ICS will act strategically to tackle the areas of health inequality experienced by people with a learning disability and autistic people.
The areas of strategic focus will be identified through the thematic learning from LeDeR reviews and must also include reference to how the ICS will reduce health inequalities faced by people from Black, Asian and Minority Ethnic backgrounds who have a learning disability.
The pdf Surrey Heartlands LeDeR strategy (734 KB) will be updated annually by the ICS to reflect learning from both the prior year and the review process and shared with the NHS England Regional Team, which will form part of the governance arrangements and ensure continual improvement.
Providing care for someone with a learning disability can be very demanding and it is important to ensure that you make time to look after your own health and well-being, not least because in many cases carers support their loved one for the rest of their life. Across Surrey, support is available to help the person you care for reach their full potential, and to support you and your family.
Speaking to people who are facing similar challenges to you can help you make sense of things. Having a network of people who you can turn to for advice and support can be very helpful. Key to all this is understanding the rights you have as a carer enshrined in the Care Act 2014 and the Children & Families Act 2014. There are many things you will want to consider including planning for the future.
The Mencap website has advice on services and support available to you.
Losing someone can be very difficult. Bereavement support can be found through the links below:
- Mencap have a bereavement advice and support page which may be helpful. There are also some useful easy read and families / carers leaflets on the following link:
- Advice can also be found on the ‘At a loss’ website:
Both of the above sites offer a link to grief chat who provide a free chat service with a specialist bereavement councillor. Mencap have also developed an easy read guide to using grief chat. This is available through the above links.
Easy Read Bereavement Resources
- Macmillan - Grief and loss when someone dies
- Macmillan - How you may feel when someone dies
- Macmillan - What can help you feel better when someone dies