Our research has found shocking health inequalities for people with a learning disability
People with a mild
learning disability
A learning disability is to do with the way someone's brain works. It makes it harder for someone to learn, understand or do things.
are at the highest risk of dying avoidably from treatable health conditions. People with profound and multiple learning disabilities are at most at risk of dying young.
Receiving appropriate medical treatment and preventative care, including vaccinations is associated with a reduction in risk of dying younger.
There are multiple barriers across the healthcare system which can prevent or delay people with a learning disability from accessing the care that they need. Both system and organisational level action is required, as well as better training and support for healthcare professionals themselves.
The last two LeDeR reports found issues with making reasonable adjustments in between 1/3 and ¼ of deaths.
Causes of death of particular concern: respiratory disease (inc aspiration pneumonia), cancer (late diagnosis esp bowel cancer where earlier screening would be beneficial), sepsis and constipation.
No one should die from a learning disability – despite many doctors recording that on death certificates.
Care at the GP Surgery
Around three quarters of people with a learning disability are not on the GP
learning disability register
The learning disability register is a list of people with a learning disability that the doctor’s surgery looks after.
.
Those most likely to be missing are people with a mild learning disability, who
research
Research is a way of finding out information which could come from books, or asking people what they think.
shows are also most at risk of avoidable death.
There is no target for increasing the number of people on the learning disability register, only to give health checks to 75% of those who are on it. We are concerned this may disincentivise adding people to the register.
Health statistics for people with a learning disability are even worse for the global majority
People with a learning disability from Black, Asian and minority ethnic backgrounds are dying even younger. LeDeR data suggests that their average age of death is 34, compared to their white counterparts at 62 and they have a higher risk of dying avoidably. It is likely that their deaths are under-reported to LeDeR due to under-representation on the learning disability register.
45% were thought to have received care that met or exceeded good practice, compared with 54% for wider cohort
% of people on the LD register who received an annual health check in 22/23 by ethnic group
Figures show there are significant differences between broad ethnic groups and especially those from ‘other’ or have refused to say or have their data missing.
Evidence is patchy and more work needs to be done.
Systems and specialist support
Learning disability nurses play a key role in supporting people with learning disability to access care.
Numbers have halved between 2009 and 2023.
Detention in in-patient mental health settings
“Despite our best efforts while Matthew was in the unit saying things were going wrong and that we were worried about Matthew - his physical health in particular – it was really difficult to be heard. The independent investigation into Matthew’s care made many recommendations. There were so many missed opportunities.” - Isabelle, Matthew's mum.
- Across Integrated care system (ICS), areas there is huge variation in in-patient rates of autistic people and people with a learning disability detained within mental health settings. Some areas are showing leadership and success in preventing unnecessary admissions and supporting people in the
community
A community is the people and places in an area.
. Other areas have repeatedly failed to meet national targets over more than a decade on reducing in-patient numbers, leaving people stuck in units for an average of nearly 5 years. - Despite integrated care board (ICB), board level leads required (Health and Care Act, 2022) on Learning Disability &
Autism
Autism is a disability. Autistic people find it difficult to understand what other people think and feel. They also find it difficult to tell people what they think and feel. Everyone with autism is different.
(all age),
Down Syndrome
Down syndrome, also known as Down's syndrome, is a type of disability. People with Down syndrome may find it hard to learn new things and may need support. They may have more problems with their health too.
(all age) and children and young people with SEND, there is insufficient monitoring and accountability on progress to reduce health inequalities, avoidable deaths and in-patient mental health unit admissions. There is no central list of the board level leads. - We welcome
the government
The Government are the people who run the country. The Government decide how much
tax
Tax is the money that pays for things like schools, hospitals and the police. There are different types of taxes like
income tax
Income tax is the money that is taken out of the money you earn every month. It helps to pay for things we all need like hospitals and schools.
,
VAT
VAT is also called Value Added Tax. VAT is the extra money you pay when you buy things. The money goes to the government to pay for things like schools and hospitals.
and
council tax
Council Tax is the money that people pay to the council. It helps to pay for things like social care (support for people), parks and dustbin collection.
.
people should pay and how things like the National Health Service (
NHS
The NHS is the National Health Service. The NHS gives free healthcare to everyone in the UK and includes things like your GP (doctors) surgery and hospitals.
) should work.
's commitment in the King's Speech to introduce legislation to change the
law
Laws are the rules that everyone in the country has to follow. If you don't follow the rules you can get in trouble with the police.
on detention under the Mental Health Act of autistic people and people with a learning disability. - It is welcome the 2024-25 NHS Planning
Guidance
Guidance means being given clear instructions to be able to do something well.
re-states the target to reduce in-patient numbers by 50%, but this is in context of failure to meet 2014, 2019, 2020 and 2024 targets set by government or NHSE.
There are currently 2025 people with a learning disability and/or autistic people being held in inpatient mental health hospitals in England.
The previous government promised it would halve the number of inpatients by the end of March 2024. Mencap estimates they won't reach this target until January 2031. That's over 6 years late (and we think it will take longer).
Only 26% of local areas have achieved the 2024 target of no more that 30 adult inpatients with a learning disability and/or autism per million adults in the population.
Mencap's analysis reveals that some local areas are going in the wrong direction - their adult inpatient rate is increasing.
33% of local areas now have a higher adult inpatient rate compared to the earliest available data.
Some of these may only be by a small amount, but for a number there is a clear trend in the wrong direction.
Share your views with the NHS
The Government are asking for everyone's views, experiences, and ideas to help them shape a new 10 Year Health Plan for the NHS in England.
Have your say with the NHS. Mencap has created an
accessible
Accessible means something is easy for people to use or join in with. For example: Accessible writing means the writing is easy to read and understand.
,
Easy Read
Easy Read is a way of making written information easier to understand. Pictures are usually added next to the writing.
version of the NHS
consultation
Consultation is finding out what people think about something.
form to help people with a learning disability share their views. You can use the form until 14 February 2025.
Further reading about the health inequalities faced by people with a learning disability
LeDeR stands for Learning from Lives and Deaths.
It's a national NHS program that reviews the deaths of people with learning disabilities and autism.
The program's goals are to:
- Improve care for people with learning disabilities and autism
- Reduce health inequalities for people with learning disabilities and autism
- Prevent early deaths for people with learning disabilities and autism
The Oliver McGowan
mandatory
Mandatory means that something must be done.
training trains health and social care staff, at the right level for their role, to provide better health and social care outcomes for people with a learning disability and autistic people.
The training will include face-to-face sessions and blended learning approaches, so it can be accessed and used by all learners.
The training is focused on raising awareness and understanding amongst healthcare professionals. It does not include training about treatments or specific interventions.
One of the most important elements of the training, and something that Mencap has long called for, is that it is co-designed and co-delivered by people with a learning disability, autistic people, family carers and experts in the subject matter.
Building the right support is a national plan to develop community services and close inpatient facilities for people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition.
The Learning Disability Register is a list of people with a learning disability that the doctor’s surgery looks after.
Anyone of any age and any level of disability can be on the Learning Disability Register.
You can join the register, even if you live on your own or do not get much support in your everyday life.
Lots of people are missing from learning disability registers, so it is a good idea to check you are on it.
If you are not on the Learning Disability Register, it may mean the doctor’s surgery do not know you have a learning disability.
Sources:
LeDeR 2023; CIPOLD 2013: LeDeR 2019;
LEDER 2023
*Using the PHE 2018 estimate of 2.16% of adults having a learning disability and the mid-2022 population estimates of adults in each region we can look at the distance on the register of estimated prevalence.
**Our analysis of NHSE data https://digital.nhs.uk/data-and-information/publications/statistical/health-and-care-of-people-with-learning-disabilities/experimental-statistics-2022-to-2023
Umpleby, K., Roberts, C., Cooper-Moss, N., Chesterton, L., Ditzel, N., Garner, C., Clark, S., Butt, J., Hatton, C., Chauhan, U. (2023) We deserve better: Ethnic minorities with a learning disability and barriers to healthcare. Race and Health Observatory Report
https://chrishatton.blogspot.com/2023/12/new-evidence-of-ethnic-inequalities-in.html
https://www.emerald.com/insight/content/doi/10.1108/JIDOB-08-2015-0018/full/html
https://committees.parliament.uk/writtenevidence/86587/html/#_ftn1
Estimating the prevalence of disability amongst prisoners: results from the Surveying Prisoner
Crime
A crime is when someone does something wrong and breaks the law.
Reduction (SPCR)
survey
A survey is when someone asks you to answer some questions.
HSSIB 2023, LeDeR (2016-23)
LeDeR; CIPOLD 2013; HSSIB 2013
Mencap analysis of Assuring Transformation data https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics