Mencap and the Challenging Behaviour Foundation (CBF) warn that the pressures of the coronavirus crisis have broken the social care system.
This lack of support in the community is leading to an increasing number of people with a learning disability and/or autism being locked away in these modern-day asylums where they are at great risk of abuse and neglect.
There has been another increase in the number of people locked away despite an ongoing Government and NHS England programme to transform care by closing 50% of beds for people with a learning disability and/or autism in inpatient units by 2024 and provide people with the right support in the community.
Latest NHS Digital figures report shocking levels of restrictive interventions (like physical, prone, and chemical restraint and solitary confinement) being used against people during lockdown.
Eight more providers supplied data on restrictive interventions this month meaning the number of recorded instances increased – 5,520 in May 2020 up from 3,330 in the previous month. However, this is still likely to be just the “tip of the iceberg” as this is only data for 6 out of 16 private/independent providers and 27 out of 56 NHS providers.
Edel Harris, Chief Executive of the learning disability charity Mencap, said:
“People with a learning disability and/or autism should never be locked up in modern day asylums, let alone subjected to horrifying levels of physical restraint, over-medication and solitary confinement. Yet some commissioners of health and social care services and NHS England continue to pay for people to be locked away where they are at greater risk of abuse and neglect.
“Lockdown has been disastrous for the Transforming Care programme. The social care system has buckled under the pressure of the coronavirus pandemic, leaving people at crisis point because they cannot get the support they desperately need. Now that we are out of national lockdown, we need the Government to urgently plug the funding gap to stabilise the social care sector and develop the vital local support services people need, as well as deliver the cross-government strategy to drive forward the change required to truly transform our social care system into one we can all be proud of.”
Vivien Cooper OBE, CEO of the Challenging Behaviour Foundation, said:
“Eight years on from the abuse scandal at Winterbourne View Hospital, data published today shows that 2,100 children, young people and adults with learning disabilities and/or autism were in inpatient units in July 2020, including 225 individuals under the age of 18.
“Despite the ongoing campaigning of people with learning disabilities and/or autism, families and organisations, people continue to spend too long in inpatient units, often experiencing restrictive interventions. In May 2020, there were 5,520 incidents of restrictive intervention – an increase of over 2,000 from April – 845 of which were experience by children and young people under 18.
“Investment in and promotion of good quality local services for children and adults with learning disabilities and/or autism has been insufficient. It is essential the government urgently acts to deliver appropriate, timely support in the community. As always, it is the individuals and their families who live with the significant impact of the failure to provide the right support in the right place at the right time.”
- 225 children with a learning disability and/or autism are still locked away in inpatient
- Little change in the number of admissions with 120 admissions in July 2020
- Delayed discharges continue with at least 115 people still stuck in hospital when they are ready for discharge in July 2020
- The average total length of stay in inpatient units is 5.6 years.
Full report accessed via NHS Digital: https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics/provisional-statistics-at-july-2020-mhsds-may-2020-final
For further information or to arrange interviews, contact Mencap’s media team on:
- 020 7696 5414 (including out of hours).
Notes to editors
- Mencap and CBF have 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 2,100 at the end of July 2020: https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics/provisional-statistics-at-july-2020-mhsds-may-2020-final
- Figures for restrictive practices quoted from NHS Digital MHSDS Data: May 2020, published August 2020. For more information: https://digital.nhs.uk/data-and-information/publications/statistical/learning-disability-services-statistics/provisional-statistics-at-july-2020-mhsds-may-2020-final
- Mencap ran an online survey with 1069 family member and carers of people with a learning disability in the UK. The survey ran for 2 weeks from 29th June to 13th July 2020. Some figures may not total due to rounding. https://www.mencap.org.uk/press-release/i-dont-know-what-day-it-or-what-weather-outside-social-care-cuts-people-learning
Figures refer to family members who said their loved one usually receives social care support. We asked ‘How does the amount of social care support your loved one receives from the local authority now compare to the amount their received before the COVID-19 pandemic?’ (n=564)
- 65.3% of family members and carers said the amount of social care support their loved one receives from the local authority has decreased a lot (meaning they receive half or less than half the hours they received before the COVID-19 pandemic)
- 3.9% said their hours have decreased a little (they receive less than before, but more than half the hours they used to)
We asked, ‘How do your loved one's support needs now compare to their support needs before the COVI9-19 pandemic?’ (n=1064)
- Over two thirds (67.4%) of family members and carers said their loved one’s support needs had increased during the COVID-19 pandemic. (35.9% said they had increased a lot, whilst 31.5% said they had increased a little)
- 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 and CBF are 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.
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-6pm, 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.
About The Challenging Behaviour Foundation
The Challenging Behaviour Foundation (CBF) is a charity which exists to demonstrate that individuals with severe learning disabilities whose behaviour challenges can enjoy ordinary life opportunities when their behaviour is properly understood and appropriately supported.
The CBF supports families across the UK caring for individuals with severe learning disabilities. Information and support around understanding challenging behaviour and supporting behaviour change is provided through a range of written and DVD resources, email networks, family linking scheme, and through individual telephone support.
For more information about the CBF’s work on restraint and seclusion visit: https://www.challengingbehaviour.org.uk/driving-change/restraintandseclusion.html