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 tonights 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.

Madge and her daughter Lizzie pictured in a scene from Holby CityRecent 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 support for Lizzie, and without this, Lizzies 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 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 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 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 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 tasks. Regardless, good social care support is crucial to people’s wellbeing, independence 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 ’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

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 FreephoneLearning Disability Helpline: 0808 8081111 or email helpline@mencap.org.uk.

-ENDS-       

For further information or to arrange an interview with a Mencap spokesperson or case study , 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

AboutMencap:

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 , employment and leisure 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 . 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.