Introducing Mencap's campaign to improve healthcare for people with a learning disability

"If the government really wants to improve the NHS in England over the next 10 years, then it has to be better for everyone, including people with learning disability ." 
- Vijay, Mencap campaigns officer

The needs of people with a learning disability must be included in the NHS 10 Year Health Plan for England

 

 

 

“The NHS is not built to look after people with a learning disability in the way that it needs to.” - Rahima Begum

 

 

 

In 2020, Rahima went to hospital for a chest infection. She was excluded from discussions about her care, and decisions were made that disregarded her feelings and wishes. One night, Rahima’s sister, Ferdus, was asked by a doctor to contemplate letting Rahima go, even though she had only come in for a chest infection. 

Rahima says that ‘In my experience doctors did not take the time to understand me. I think that the NHS finds it difficult to change how they do things for someone with a learning disability like me. If the Government can make sure the NHS works for people with a learning disability then we can get the help we need, and there will be less mistakes’.    

Most of the different people and services involved in Rahima’s care do not talk to each other often either, leaving Rahima and Ferdus to pass messages from one to the other, holding all the information themselves, repeating the same things in every appointment and feeling exhausted.

People with a learning disability deserve better NHS services that work for them

Sadly, Rahima is not the only person with a learning disability who has not received the healthcare they need. A shocking 42% of deaths among people with a learning disability were avoidable. A main cause of this is that health services aren’t built to support people with a learning disability.   

Rahima in a park being wheeled away down a path by her carer

The NHS is missing the building blocks it needs to care for people with a learning disability. But we know how to fix it. The Government is building a new plan for the NHS in England

We want the Government to commit to building an NHS that can meet the needs of people with a learning disability.      

23 years

is the average number of years that women with a learning disability die younger than the general population. For men, it is 20 years younger. 

(source: LeDeR report)

Over half (51%)

of people with a learning disability said they did not get the communication support they needed at the GP surgery

(source: 2022 Mencap survey)

45%

of people with a learning disability said that when they do get the support they need at the GP surgery, they have to push to make it happen

(source: 2022 Mencap survey)

People with a learning disability from Black, Asian and minority ethnic backgrounds are dying even younger

Research 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. Their deaths are under-reported in research – it is likely this is because they are also missing from the learning disability register .    

Campaign for change

NHS changes we are calling for

  • We need a healthcare system that works for people with a learning disability. We want to see an NHS which knows if someone has a learning disability, knows what adjustments they need for their care, and knows how to act on it.
  • We have already worked with the Government on lots of tools to fix the problems, like the Learning Disability Register, and the Accessible Information Standard, but these are not working effectively due to a lack of resources and prioritisation. The Government needs to make sure they are working well and the NHS can use them.
  • The Government has committed to transforming the health service. If they listen to people with a learning disability to build the plan, it will be a transformational opportunity to give people with a learning disability the care they deserve and save lives.  

More stories and statistics about healthcare for people with a learning disability

Questions and answers about the NHS 10 Year Health Plan

People with a learning disability are more likely to have complex health needs than the general population, yet are also more likely to experience difficulties accessing NHS services, putting them at risk of missing out on the care they need. 

The most recent LeDeR report showed that people with a learning disability are twice as likely to die avoidably than the general population. Previous research  has shown that when people with a learning disability die avoidably, this is 4 times more likely to be from treatable causes than the general population. 
Research also shows when people with a learning disability get the care they need, they are less likely to die young (LeDeR 2023). 

Barriers across the healthcare system can prevent or delay people with a learning disability from getting the care they need. Some of the these barriers can be addressed with training – for example difficulties with communication in appointments, or decisions not to treat someone based on their learning disability. However, many of the issues are because of how the NHS works, for example, services not working together well, or organisations not being able to do things in a different way when needed. 

Systems and processes were the most commonly reported problem with care in the most recent LeDeR report. To tackle health inequality for people with a learning disability, we need the NHS to change the way it works. 

We need the Government to make sure that the NHS works for people with a learning disability by: 

  • Making sure the NHS has good systems for the needs of people with a learning disability, including those most at risk of missing out on care i.e. from minoritised groups.
  • Make sure health services identify people with a learning disability and what support they need. 
  • Make sure people get the reasonable adjustments they need, such as an appointment at a quieter time of day or accessible information. 
  • Make sure there is good quality training for NHS staff on learning disability and autism .  
  • Provide joined up, coordinated care for people with complex health needs.
  • Offer better support to help people stay well, including improved access to screening.
  • Increase the number of learning disability nurses to provide support both in hospitals and in the community

If the new plan puts people with a learning disability at the heart, the Government can make sure people can access the care and treatment they need, when they need it. 

The Government are building a 10 year plan for the NHS, which will be published in Spring 2025. This consultation will help them decide the most important issues and how to tackle them.  

The 10 year plan is a chance to build an NHS that works for people with a learning disability - but this will only happen if the Government prioritises the issue. That’s why it’s so important to respond to the consultation, and tell them why it is important to tackle health inequality for people with a learning disability. 

Mencap have been campaigning on health inequality for people with a learning disability for many years. In addition to our campaigning we:  

  • Support people and families who have struggled to access healthcare through our Information and Advice Service 
  • Deliver the Oliver McGowan Mandatory Training in Learning Disability and Autism, helping to ensure thousands of healthcare professionals can provide good quality care to people with a learning disability.
  • Work in partnership with organisations such as NHS England and DHSC to help them tackle health inequality and hold them to account for delivering care.
  • Amplify the voices of people with a learning disability and their families, ensuring national attention to the issues they face through our parliamentary and media work.