For immediate release: Monday 28 October 2024
CHARITY REVEALS SHOCKING TREATMENT OF PEOPLE WITH A
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.
DURING COVID INQUIRY
· Mencap reveals the staggering health inequality people with a learning disability faced during the pandemic, with some being refused treatment or denied resuscitation by medics
· Charity says the pandemic has shone a light on the ‘intolerable’ barriers to access healthcare faced by more than 1.5 million people with learning disabilities due to deeply-rooted societal prejudice
People with a learning disability were treated in a ‘bias’ way during the pandemic and were written off, with doctors and nurses being advised to refrain from giving emergency care and even resuscitate them simply because they had a learning disability, according to evidence from a leading charity given at today’s Covid Inquiry.
Learning disability charity Mencap’s Executive Director of
Strategy
A strategy is a plan to show what an
organisation
An organisation are a group of people who work together.
, or a person, wants to do and how they are going to do it.
and Influencing Jackie O’Sullivan, today spoke out as part of module three of the inquiry which is looking into the health response to the 2020 outbreak.
She revealed that people with a learning disability have always faced deep-seated and damaging
discrimination
Discrimination is when someone is treated differently (usually in a bad way) because of things like their disability or their
religion
Religion is to do with the things you believe about the world. For example you may believe there is a god or something else. Examples of religions are Christianity, Hinduism, Islam and Judaism.
.
when trying to access medical care, which accounts for why so many die younger than the general population. During the first wave of the pandemic people with a learning disability were up to four times more likely to die from Covid.
At the inquiry, Mencap revealed:
· GPs contacted care settings where people with a learning disability lived advising that they shouldn’t be treated or even resuscitated if they were admitted to hospital with Covid symptoms. They were being assessed using a clinical tool meant for assessing over 65s.*
· There was a significant lack of reasonable adjustments made for people with a learning disability around being accompanied in an ambulance in an emergency or having visitors in hospital. Many were isolated and afraid with no one to offer comfort or explain what was going on and with clinicians missing out on getting crucial health information.
· People with a learning disability were being discharged from hospital without adequate support, ending up in unfamiliar care settings which caused distress and confusion.
· Remote GP appointments meant many people with a learning disability were unable to effectively communicate their pain or symptoms with or understand their GP properly resulting in missed diagnoses.
More than 1.5 million people in the UK have a learning disability which is a reduced intellectual ability, which affects their ability to do many day-to-days tasks people take for granted. Some people with a learning disability need full-time care and support with every aspect of life, while others are able to work and socialise. Communication needs can vary, so it is a legal requirement for healthcare professionals to make adjustments to effectively ensure they understand patients and their health information.
But Mencap says during the pandemic many people with a learning disability were denied adjustments such as having a family member with them to explain what was happening or getting Easy-Read information. Many found it harder to communicate with doctors and nurses because PPE obscured their facial expressions.
In a
survey
A survey is when someone asks you to answer some questions.
of learning disability nurses run by the charity, only one in five learning disability nurses reported always seeing reasonable adjustments being made and one in four learning disability nurses surveyed said they had seen examples where people with a learning disability were not allowed to be accompanied by a family member, carer or supporter into hospital.***
The charity says these reasonable adjustments ‘aren’t just ‘nice-to-haves’, they can be the difference between life and death.’ A report into premature deaths for people with a learning disability found that a lack of reasonable adjustments to care had contributed to a significant number of deaths.
People with a learning disability die on average up to 23 years earlier than the general population and only 4 in 10 will reach their 65th birthday**.
Mencap was also deeply concerned to hear that more than half of the learning disability nurses it surveyed indicated a concerning level of risk of people with a learning disability being given a ‘Do Not Resuscitate’ order (
DNACPR
DNACPR stands for "Do not attempt cardiopulmonary resuscitation." This means a doctor will not try to start your heart if it stops beating, or give you oxygen through a mask if you stop breathing.
), meaning if they have a cardiac arrest they would not be resuscitated.
This was being applied in a blanket way because someone had a learning disability, failing to take into account that many were fit and healthy.
The charity has urged Government to ‘right the wrongs’ so many people with a learning disability have faced when accessing healthcare by including their views and needs in the
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.
10-year-plan. Mencap has a series of recommendations to tackle the inequalities people with a learning disability face including
mandatory
Mandatory means that something must be done.
training for doctors and nurses on learning disability and
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.
, and for new learning disability improvement standards. It also needs to address pressures on NHS staff to allow them to have enough time to support people with a learning disability with reasonable adjustments.
Jackie O’Sullivan, Executive Director of Strategy and Influencing at Mencap says:
“For too long people with a learning disability have faced outdated attitudes, and when these are present within the NHS, they
experience
Experience is when you have learned or tried something before.
a healthcare system that dangerously fails to meet their needs.
“During the pandemic, stretched NHS resources and pressured decision-making meant that biases and discrimination became more visible and people with a learning disability suffered because of it. They were treated in a that caused fear, distress and put their lives at risk.
“The NHS 10 Year Plan is an opportunity to right some of the wrongs for people with a learning disability and start giving them the same chance of a long and healthy life as everyone else. Government has a chance to learn from mistakes that have gone before and will need to truly listen to the experiences of people with a learning disability throughout this
consultation
Consultation is finding out what people think about something.
process.”
April Sly, 63, from Castle Donington in Leicestershire feels her brother Nigel was discriminated against by doctors and nurses for having a learning disability when he was admitted to hospital with Covid in April 2020. She says:
“A doctor asked me if I would want Nigel to be ventilated saying they often don’t do it ‘for people like Nigel’. I was shocked as it felt like they were writing him off just because he had a learning disability. My brother was only 60 and led a happy, healthy life.
“A nurse later told us they had made a decision not to resuscitate and to withdraw treatment but the reasons didn’t stack up – they said he had no quality of life but this was simply not true. He loved his busy life up to Covid: he read, had a season ticket at his favourite football club and, like everyone, deserved to live a long life. I fell ill and couldn’t be with Nigel in his final moments and the lack of training and learning disability nurses meant he had no one to help him communicate or
advocate
An advocate is a person who can help you have your say. An advocate can speak up for you if you find it hard.
for him.”
April says she saw discrimination in the healthcare system before the pandemic as well as during it. She says: “Doctors shouldn’t assume patients with a learning disability can’t make decisions or make decisions for them. We need to remember these are people with needs and wants just like everyone else and if anything they need more support and consideration as they are at a disadvantage. The NHS needs to better consider people with a learning disability and give better training for healthcare professionals.”
Mencap is calling for a healthcare system that works for people with a learning disability. People with a learning disability deserve to be respected by the healthcare system, and have their needs understood and catered for every time they require healthcare.
As
the Government
The Government are the people who run the country. They 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 for things and how things like the National Health Service should work.
has launched its consultation into the future of the NHS, Mencap says it wants to see people with a learning disability prioritised so they are respected by the healthcare system, have their needs understood and catered for every time they require health care.
The charity says the NHS’ long-term plan must ensure reasonable adjustments can be made for people with a learning disability, that they have better access to care and treatment, that there are more learning disability nurses and better training for staff so that people with a learning disability get the support and care they deserve. These vital changes will deliver transformational, life-saving changes for people with a learning disability.
-ENDS-
For further information or to arrange an
interview
An interview is a meeting where you talk to someone or a group of people about something. When you have an interview for a job, you have to answer questions and say why you would be good at the job. The person who gives the best answers is offered the job.
with a Mencap
spokesperson
A spokesperson is someone who speaks up about something. They usually speak up on behalf of a group or organisation.
or
case study
A case study is a piece of writing that tells people more information about someone's experience.
, please contact Mencap’s media team on: media@mencap.org.uk or 02076965414 (including out of hours).
*The Clinical Frailty Scale is used by healthcare professionals to assess the health status and vulnerability of older adults and deciding the best treatment for them. It should not be used to determine if treatment should be stopped - it should guides clinicians into making informed decisions based on an individual’s overall frailty and prognosis. It should never be used to assess patients aged under 65, or patients of any age with stable long-term disabilities (for example cerebral palsy), learning disabilities or autism.
**LeDeR (Learning from lives and deaths of people with a learning disability and autistic people)
annual report
An annual report is a booklet which an organisation writes every year. It tells you what they did that year.
2022 (published 2023).
***https://www.mencap.org.uk/sites/default/files/2020-12/MyHealthMyLife_COVID%20report%20%281%29.pdf
Notes to editors:
About Mencap:
Mencap exists to ensure the UK is the best place in the world for people with a learning disability to live happy and healthy lives. We support people directly and
campaign
A campaign is when people work together to try to change something.
with people with a learning disability, their families and carers. We work to change laws, increase representation and campaign for better health, social care and
employment
Employment means having a job.
opportunities for the 1.5 million people with a learning disability in the UK.
What is a learning disability?
A learning disability is a reduced intellectual ability which affects someone for their whole life. Typically, people with a learning disability need more time to learn and process information. They may need extra support to develop skills, complete tasks and interact with others, or they may have more complex needs requiring round-the clock care. The level of support needed is different for everyone and may change during a person’s lifetime.
Learning disability is NOT a mental illness or a learning difficulty. Often, the term ‘learning difficulty’ is wrongly used in place of ‘learning disability’. Having a learning difficulty (such as ADHD or
dyslexia
Dyslexia is a learning difficulty. People who have dyslexia can find it hard to read, write and spell.
) may mean a person learns at a different pace or in a different way BUT – unlike a learning disability - it does not affect a person’s intellect.
With the right support, most people with a learning disability can lead happy, healthy, independent lives. At Mencap, it’s our mission to remove societal barriers and shatter misconceptions to make this more possible for more people.
Mencap’s guide to reporting on Learning Disability
When it comes to creating content with people with a learning disability, we know many people feel nervous about saying and doing the wrong thing. Our guide for journalists, covers everything from up to date facts and figures to the right language to use. It also includes tips on how to work with people with a learning disability to gather the best content.