Mencap warns that the COVID-19 pandemic is putting vulnerable people in inpatient units at even greater risk as deaths are confirmed.
- At least 2,045 people with a learning disability and/or autism still locked away in inpatient units as charities warn they are at even greater risk during coronavirus crisis
- 190 children with a learning disability and/or autism are still locked away in inpatient units
- At least 5 people with a learning disability and/or autism locked away in inpatient units died in April 2020
- People with a learning disability and/or autism continue to be locked away during lockdown – 70 admissions in April 2020
One year on from BBC Panorama’s expose of the Whorlton Hall abuse scandal, NHS Digital data shows that at least 2,045 people with a learning disability and/or autism remain locked away in inpatient units in April 2020, of which 190 are children.
This comes as charities, advocacy groups and families warn of the huge risks faced by vulnerable people in these units, where they are at increased risk of abuse, neglect and contracting and potentially dying from COVID-19 during the coronavirus crisis.
Last month, at least 5 people with a learning disability and/or autism died in inpatient units; according to NHS England data, there has been at least 76 deaths from COVID-19 specifically in Mental Health and Learning Disability and/or Autism inpatient settings, as of 14th May 2020. Families are also extremely worried about the treatment of their loved ones at this time with reports of increased use of seclusion and over-medication, as well as some inpatient units cutting family contact.
Last month, the Government failed to meet its own Transforming Care programme target for the second year running with almost 300 more adult inpatients still locked away at the end of March 2020. This revised target followed the failure to meet the target set in 2015 to close, by March 2019, 35-50% of in-patient beds.
Despite lockdown, there continues to be a steady stream of admission with 70 admissions in April. Delayed discharges also continue with at least 130 people still stuck in hospital when they are ready for discharge in April, with the main reasons being a lack of social care and housing provision in the community.
While powers in the Coronavirus Act risk leaving vulnerable people unable to access the social care they need. This means that people with a learning disability and/or autism are at increased risk of being locked away while those who are currently locked away will remain stuck in inpatient units or discharged into unsuitable temporary placements which will leave them at risk of readmission.
Edel Harris, Chief Executive of the learning disability charity Mencap, said: “It’s one year on from the BBC Panorama programme’s exposure of the hospital abuse scandal at Whorlton Hall, yet people with a learning disability and/or autism continue to be locked away in these modern-day asylums during the coronavirus crisis, at even greater risk. Some families are rightly terrified about what might be happening to their loved ones behind closed doors and today’s data confirms that there has been at least five deaths in one month. With family contact cut and CQC inspections reduced during lockdown, there is huge concern about who is making sure that some of the most vulnerable people in society are being kept safe and well during this national crisis.
“While there has been a decrease in the number of people with a learning disability and/or autism locked away in inpatients units, we are still deeply concerned that there continues to be new admissions during lockdown. The Care Act easements in the Coronavirus Act risk even more people reaching crisis point because they can’t get the support they need at home. We know from our work supporting families that people are often being discharged into temporary placements or back into the family home, leaving them without the support they need at an extremely challenging time. This is putting huge strain on families and risks creating a vicious cycle as people reach crisis point and are in danger of being admitted again.
“People with a learning disability and/or autism are being forgotten in this crisis – and nowhere more than those who are locked away behind closed doors. The Government, CQC and NHS England must fulfil their duty to ensure the safety and wellbeing of people with a learning disability and/or autism in inpatients units. Government and NHS England must also sustain and build community support packages for the people who have been discharged and make sure funding reaches frontline social care services. Lockdown must not result in more people being locked up.”
Vivien Cooper OBE, CEO of the Challenging Behaviour Foundation, said: “The pandemic has affected everyone, but for families whose relatives with a learning disability and/or autism who are in inpatient units their already significant concerns have further increased. We know that there are multiple reports of restrictive practices (restraint, seclusion and inappropriate use of medication) – although this is likely to be just the “tip of the iceberg” as only data for 3 out of 14 private/independent providers and 29 out of 56 NHS providers has been collected. Added to this now we know that COVID-19 has been spreading, amidst concerns about the lack of PPE equipment, and families are fearful for the safety, health and wellbeing of their relatives. For over nine years we have heard politicians declare their commitment to transform care – we are still waiting for that to happen, despite more scandals and dozens of reports. This data, these numbers, represent people whose lives could and should be transformed.”
The Care Act easements contained within the Coronavirus Act relieve local authorities of their full duties so that they can prioritise the cases they deem most urgent. Families have already expressed concern that local authorities are already making use of the Care Act easements to cut vital support for people with a learning disability and/or autism.
The average total length of stay in inpatient units is 5.7 years. While in these units, children and adults with a learning disability and/or autism are subject to restrictive interventions (like physical, prone, mechanical and chemical restraint) – 3,590 in one month, of which 605 were against children. This is likely to be just the “tip of the iceberg” as only data for 3 out of 14 private/independent providers and 29 out of 56 NHS providers.
Anonymous case study:
“Our daughter has been locked away in inpatient units for nearly 15 years now. We were finally looking forward to her being discharged into a community placement with 24-hour care in March, when the coronavirus crisis struck, and everything was put on hold. This came as a devastating blow to our family. We had been planning for her next stage of life, for her to finally achieve a level of independence, and her freedom was almost in grasp.
“This has had a massive impact on my daughter. Not knowing when she will be coming home has led to her anxiety levels increasing. Lockdown has also meant that we haven’t been able to visit her, and we haven’t been told when we can next see her. Throughout lockdown, she has been confined within the inpatient unit with only walks in the small courtyard; although she will be able to go out for limited walks with one of the support staff soon.
“We were worried sick that our daughter might contract COVID-19 while she is still locked away. Being trapped in an inpatient unit can make people physically vulnerable; I know from our daughter’s experience that it is difficult for patients to get regular physical exercise, eat healthily and people are often overmedicated. That kind of lifestyle takes a serious toll on the body. I was also worried about whether she would get the medical treatment she needs at the right time if she fell seriously ill.
“Our worst fears were realised when our daughter started displaying COVID-19 symptoms. We felt completely helpless because we couldn’t do anything to care for her while she was unwell. Although she was never tested, she was treated by the inpatient unit as being positive and was isolated for eight days. Thankfully, she is over the worst of it now but other people in her hospital are also suspected to have had it.
“What is the hardest thing for my daughter and our family during the coronavirus crisis is not having a discharge date that we can look forward to. We hope that she will be out before her next birthday so that we can celebrate together, that’s all we can do to help keep us going.”
– Ends –
For further information or to arrange interviews, contact Mencap’s media team on:
- 020 7696 5414 (including out of hours).
Notes to editors
- Mencap has been campaigning with families on these issues since the abuse scandal at Winterbourne View nine years ago.
- The Assuring Transformation data from NHS Digital is the most accurate and up to date account of people with a learning disability and autism in institutions. It is a record of how many are in an institution, how long they have been in for, when their care and treatment is checked and what kind of unit they are in. Latest data shows that numbers have fallen from 2,260 at the end of March 2019 to 2,045 at the end of April 2020: https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics/provisional-statistics-at-april-2020-mhsds-february-2020-final
- Figures for restrictive practices quoted from NHS Digital MHSDS Data: February 2020, published May 2020. For more information: https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics/provisional-statistics-at-april-2020-mhsds-february-2020-final
- In the tables for restrictive practices we cannot distinguish between ‘less than 5’ and ‘missing data’, so we have to treat this all as missing data.
- Mencap is asking the Government to focus on:
- Developing local expertise, support and services
- Ensuring there is joint oversight and ownership of the national programme by the Ministers from the Department of Health and Social Care, Department of Housing, Communities and Local Government and Department for Education.
- Removing the red tape and funding barriers that are preventing so many people from returning home.
- There remains no robust plan from leadership for cross-government working.
There are 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 (9am-3pm, Monday-Friday) or email firstname.lastname@example.org.
What is a learning disability?
- A learning disability is a reduced intellectual ability which can cause problems 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.
 According to NHS England data, there has been at least 76 deaths specifically in Mental Health and Learning Disability and/or Autism inpatient settings, as of 14th May 2020: https://www.england.nhs.uk/statistics/statistical-work-areas/covid-19-daily-deaths/.
 According to calculations made by Mencap and the Challenging Behaviour Foundation, for NHSE’s one year target of ‘37 adult inpatients per million population’ by March 2020 to be met, it would mean there would be approx. 1,600 adults in inpatient units at the end March 2020. NHS Digital date showed that there were at least 1,895 adults with a learning disability and/or autism remain locked away in inpatient units in March 2020 – almost 300 more adult inpatients than the target.