Mencap, the learning disability charity, has worked with hospital drama, BBC One’s Holby City, on a storyline about a nurse at the hospital, Madge, and her daughter, Lizzie, who is autistic and has a learning disability. In tonight’s dramatic episode (15 March 2022), audiences discover that Lizzie has been missing out on vital extra support at home and her behaviour has become increasingly challenging, leading to Madge getting injured.
Recent episodes showed Madge’s colleagues growing worried that she is being abused by her husband after she collapses due to injuries and needs surgery, but Madge discloses that the injuries are from her 19 year old daughter. It is revealed that the family has not been able to access
social care
Social care means the services that give care and support to people who need it.
support for Lizzie, and without this, Lizzie’s behaviour has escalated and becoming more challenging.
Mencap says when people with a learning disability do not have their care meets met - for example if they don’t get the right support, live in unsuitable environments, are abused or
experience
Experience is when you have learned or tried something before.
unaddressed physical health issues - they may display what is known as ‘challenging behaviour’. They are episodes triggered by frustration, anxiety and pain rather than intent to harm another person.
Mencap, and a family who have been through a similar experience to the Holby City characters, worked with producers to advise on aspects of the storyline. The charity hopes that it will raise awareness of the need for better social care funding so people with a learning disability and their families never reach a crisis situation.
In some cases when someone’s behaviour escalates, people with a learning disability can be sectioned under the Mental Health Act and admitted to inpatient units. Currently there over 2,000 people with a learning disability and / or
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.
who continue to be trapped in units where they are at increased risk of abuse. People are also often held long distances from home with limited interaction with their families, and are also in danger of being subjected to restrictive practices - like physical restraint, chemical cosh and solitary confinement.
Most people with a learning disability and / or autism who end up in units could be supported in the
community
A community is the people and places in an area.
if the right services were in place. Once detained in units, people deteriorate because the environment is not right for them. This in turn can make their behaviour more challenging, ultimately making it harder to get them discharged.
Annemarie, whose daughter Catherine was nearly admitted to an inpatient unit after not receiving the right support, shares their story:
“In February 2020, I received a phone call one day informing me that my daughter, who has a learning disability and autism, was being assessed later that day by the mental health team with a view to her being sectioned and hospitalised.
She had never ever been aggressive or violent before but, because of the way she had been treated and a lack of the right care and support, her behaviour had become more challenging and she became quite aggressive towards her support workers although never hurt anyone. Fortunately two of my daughter’s former support workers offered her a place in their own service. They knew my daughter well, understood her needs, and knew how to support her well in the community, yet the local authority were not willing to fund the placement and it was only after seeking advice and legal support that they agreed to it. She has now been in her new home for a year and a half now and – with the right support - has quickly returned to the happy, bubbly, fun loving young lady that we had been missing for long.”
Leo, whose son Stephen spent six years in an inpatient unit, shares their story:
“At 18 years old Stephen, who has a learning disability and autism, was sectioned after his behaviour became more challenging and staff at his school struggled to support him. He would hit me very badly and I sustained black eyes, broken ribs and bruises – the neighbours often called police. I begged for help from my local authority but was told I was a good parent and coping well, eventually I had to seek legal help to try and get some support. But things deteriorated and Stephen was sectioned.
“Stephen was detained in a psychiatric unit, against our wishes, with much older patients who had a range of different psychological conditions. He was far from home and - when I was allowed to see him - he was covered in bruises and gashes from where he had hit himself from being anxious. Stephen’s consultant said that he should be moved somewhere more suitable but it took six years for my son to be discharged.
“This Holby City storyline shows what can happen to a family without the right support, and reminds me so much of what happened to us. It ultimately comes down to social care funding - but money should never be the reason to ignore the human rights
Human rights
Rights are the things everyone should be allowed to do like have a say, or go to school. are the rights that everyone has. These include the right to go to school and the right to start a family. of a family and the person alike.”
Dan Scorer, Head of Policy and Public Affairs at the learning disability charity Mencap, commented:
“Holby City’s storyline highlights what is happening every day in our society – that the social care system is under huge pressure and people with a learning disability and their families are struggling because they can't access the help they need.
“The level of support that someone with a learning disability needs is different for each person - some people may need fulltime care while others will only need help with certain
Certain means you are sure about something. tasks. Regardless, good social care support is crucial to people’s wellbeing, independence
Independence means doing things on your own. Making your own choices. and health. People with a learning disability can thrive if they have skilled and tailored support at home or in other settings. But, for some people, not getting high-quality support at the right time can lead to crisis and even being admitted to inpatient mental health units. The average length of stay in these places is over 5 years, and people can experience physical restraint and be kept in solitary confinement.
“Over 2,000 people with a learning disability and/or autism are in this situation. The only way to stop this scandal is by properly funding the specialist care and support people need. Families should never have to reach crisis, and so no-one should become trapped in what are essentially modern-day asylums.”
To find out more information about
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 Transforming Care programme and Mencap’s campaigning, visit Mencap’s
website
A website is a page you can go to on the internet like Google or YouTube.
: https://www.mencap.org.uk/get-involved/campaign-mencap/governments-broken-promise-transform-care
Mencap is encouraging people to add their voice to fight for change here: https://secure.mencap.org.uk/en-gb/transforming-care
If you are worried that someone you know with a learning disability and/or autism is at risk, you can contact Mencap’s Freephone Learning Disability Helpline: 0808 8081111 or email helpline@mencap.org.uk.
-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
An organisation are a group of people who work together.
.
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).
Notes to editors:
For many years Mencap’s ‘Homes Not Hospital’ campaign has called for urgent, national, system change to stop people being admitted to inpatient units. To find out more information about the Government’s Transforming Care programme and Mencap’s campaigning, visit Mencap’s website: https://www.mencap.org.uk/get-involved/campaign-mencap/governments-broken-promise-transform-care
About Mencap:
There are approximately 1.5 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to
education
Education is when you learn things. When you fill in a form to get a job, education means you write where you went to school, college or university.
,
employment
Employment means having a job.
and
leisure
Leisure is when you have time to do things you enjoy like playing sports or going to the pub.
facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want: www.mencap.org.uk
For advice and information about learning disability and Mencap services in your area, contact Mencap’s Freephone Learning Disability Helpline on 0808 808 1111 (10am-3pm, Monday-Friday) or email helpline@mencap.org.uk.
What is a learning disability?
- A learning disability is a reduced intellectual ability which means that people might need support with everyday tasks – for example shopping and cooking, or travelling to new places – which affects someone for their whole life;
- Learning disability is NOT a mental illness or a learning difficulty, such as
dyslexia
Dyslexia is a learning difficulty. People who have dyslexia can find it hard to read, write and spell.
. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’; - People with a learning disability can take longer to learn new things and may need support to develop new skills, understand difficult information and engage with other people. The level of support someone needs is different with every individual. For example, someone with a severe learning disability might need much more support with daily tasks than someone with a mild learning disability.