In May this year, it will be 10 years since the abuse and human rights violations at Winterbourne View were exposed.
As a result of the scandal, the government laid out the Transforming Care programme which saw various initiatives aim to significantly reduce the number of people with a learning disability or autism admitted to hospitals and assessment and treatment units (ATUs).
NHS England entitled their initiative “Building the right support”, which aimed to halve the number of learning disabled and autistic people in inpatient settings by 2019 and improve the health and care services in those which remained open.
However, this target was not even closely met. As a result, the timescale was extended and now aims to reach the same goal by 2024.
As well as the “Building the right support” programme, there are two other initiatives (the Winterbourne View Concordat and the Learning Disabilities and Autism Programme) which are essentially addressing the same problem.
How many learning disabled and autistic people are in inpatient units now?
In 2012, there was 3,400 people in NHS-funded learning disability inpatient beds. By 2019, this number should have fallen to 1,700.
The latest figures, from March 2021, reveal that there are still at least 2,050 people with a learning disability and/or autism in inpatient units. Although this number has fallen over the last few years, it is still a long way from reaching the target.
Sadly, the figures are no better for young people. In fact, the number of under 18s with a learning disability and/or autism in inpatient units continues to grow. Since 2015, the figure has nearly doubled from 110 children 6 years ago to 210 as of March 2021.
How long is the average length of stay in an inpatient unit and what should it be?
The latest data reveals that the average length of stay for inpatients is 5.6 years, a figure which has barely changed since 2011.
Experts say that patients should only be in an ATU for a short period of time to receive treatment. Margaret Flynn, who authored the Serious Case Review of Winterbourne View, said treatment should not exceed 6 months.
The figures from March 2021 also reveal that in one month alone, 95 patients had a delayed transfer of care, revealing that many people with learning disability or autism are stuck in hospitals due to delayed discharge. These individuals have been assessed as no longer needing in-patient care, yet remain in hospital. The key reasons identified were a lack of social care and suitable housing.
This comes at huge expense to the taxpayer, considering the average cost of enforced detention in a hospital run by the NHS is £3,000 a week. This means the cost of 6 months of treatment in an ATU is £78,000.
Are restraints still being used frequently?
As well as the aim of closing many inpatient settings, NHS England also set out to improve the quality of care in those that remained open, this includes reducing the amount of restrictive interventions.
Restrictive interventions include physical, chemical and mechanical restraint, as well as being kept in isolation.
In December 2020, the total number of reported restrictive interventions in one month was 3,730, including 835 incidents involving patients under the age of 18.
A figure which is particularly shocking considering there are still 39 providers that aren’t reporting – meaning these high figures are likely to be just the tip of the iceberg.
Facedown (prone) restraints are banned under government guidelines, however, the latest figures which were obtained in 2018 revealed that prone restraints increased from 2,200 incidents in 2016 to 3,100 in 2017.
There have not been any published figures on prone restraints in inpatient settings since then, so it is impossible to know how the number has been affected more recently.
Anecdotes have proven that all forms of restraint, but especially face down restraints, can be damaging as well as demoralising and can have a lasting and significant impact on the individual.
So, why do the numbers continue to rise? The reason for restraint use is often justified by the fact that inpatient units are full and operating under massive strain due to being under-staffed, which increases the risk of violence and heightened force.
If this is true, there is ever more reason to remove people from in inpatient settings and put them back into their homes, within the community. So why, isn’t this happening?
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.”
What needs to change?
The government vowed to release those from institutional care who don’t need to be in such settings and 10 years later, it still hasn’t happened.
Individuals with learning disabilities, their families, carers and clinicians, will still say that many inpatients could be discharged if there was better support available in the community. Yet, many remain behind locked doors in institutions and can be left completely socially isolated for long periods. It is clear that this sort of treatment often exacerbates problems rather than improving them.
In 2018, NHS England said an extra £53 million was transferred from the decommissioning of specialist in-patient beds to local health organisations to support community-based initiatives.
With such a huge investment, by now we should be seeing some significant improvement. It seems that unless funding it properly utilised by local governments and the NHS, the same problems will continue.
Norman Lamb, former care minister, said: “We have a responsibility, in a civilised society, to treat everyone as equal citizens, and it is intolerable for people with learning disability and people with autism to be locked up in this day and age, often breaching their human rights, when they are capable of living with support in the community.”
What happens next?
At this point, the goal should be (as it always has been) to prevent admission in the first place and ensure that community projects exist in order to make this possible.
Where treatment is absolutely necessary, it must be shortened. No matter how good hospital care is, a hospital is not a home. Those with a learning disability and/or autism should be able to live at home (with support) and have the ability to exercise control and choice.
On Tuesday 13th April, the treatment of autistic people and individuals with learning disabilities will be examined by the Health and Social Care Committee.
The inquiry will two evidence sessions with particular focus on the use of restraint and “sectioning”. It will also consider issues around seclusion, taking into account criticisms regarding human rights.
Finally, it will discuss what the Government plans to reform mental health legislation will mean for autistic people and individuals with learning disabilities.