An arbitrary number

What is the current state of autism and learning disability care following demands for the CQC to scrap its requirement for all units to have no more than six beds? Kathy Oxtoby reports

Thousands of people with autism and learning disabilities are living in inappropriate settings. And it is all down to an arbitrary figure – six. So says Care England, which has called on the government to drop the cap on care home learning disability places. According to the charity that represents independent care providers, the limit of six places for adults with autism or learning difficulties in a care home has left more than 2,000 individuals requiring specialist accommodation in hospital or inappropriate assessment centres.

“We are concerned this policy is consigning people with learning disabilities and autism to inappropriate services,” says Professor Martin Green, chief executive of Care England. He says the failure of the Department of Health and Social Care’s Transforming Care programme to close 30% to 50% of inpatient beds for those with learning disabilities and/ or autism by March 2019, is largely attributable to the Care Quality Commission’s limit on the number of rooms allowed in a learning disability home.

Unit limitation This unit limitation is having a large-scale impact on individuals and their families. According to the National Autistic Society, a survey of around 11,000 autistic adults and their families in England and evidence sessions in Parliament, published last autumn, found that:

• Three in four (76%) autistic adults had tried to obtain mental health support in the previous five years; almost two thirds (64%) of families had tried the same • Six in 10 (58%) autistic adults say they need counselling, but only one in five (21%) get this support. Four in 10 (40%) of families need this support but only one in 10 (11%) get it • Four in five (82%) autistic adults believe the process of getting support from mental health services took too long; over eight in 10 (87%) of families believe this is the case • Only 14% of autistic people think there are enough mental health services in their area to meet their needs; 11% of families think this.

The survey was part of an inquiry by the All Party Parliamentary Group on Autism, with support from the National Autistic Society, exploring the impact of the Autism Act 10 years after its introduction. The inquiry heard that as a result of not getting support, many people with autism are becoming isolated and at risk of developing mental health problems.

The National Autistic Society says: “Services like social groups, befriending, or help to get people out and about can make a huge difference to autistic people’s wellbeing, but are often not available. Too many develop mental health problems because they can’t get this support early enough and, as a result, an increasing number end up in mental health hospitals miles away from their friends and family – and in some disturbing cases, inappropriately restrained, over-medicated and kept in isolation.”

The government has acknowledged the need to develop community services for people with a learning disability and/or autism – the NHS England strategy ‘Building the Right Support’ from 2015, set out the target to close up to 50% of the beds in the hospitals by March 2019. However, according to the learning disability charity Mencap, only 22% of beds were closed by that date. The new target of closing 35% of beds by last month has probably not been met, Mencap says. And another target, of closing 50% of beds was published in the NHS Long Term plan last year, to be achieved by March 2024.

Data released from NHS Digital shows that in January this year 1,950 adults and 235 children “continue to be locked away”, Mencap says. “There has been little change in the number of admissions with 100 people admitted in January alone. While 140 people remained in hospital when they are ready for discharge, with the main reasons being a lack of social care and housing provision in the community,” the charity says.

Mencap says discharge delays continue – that there are 140 people with a learning disability and/or autism who should be back home in their community. There are a high number of reported uses of restrictive inventions – 3,500 in one month, of which 805 were against children. It says this is likely to be just the “tip of the iceberg” as only data for three out of 18 private/independent providers and 28 out of 54 NHS providers was gathered. And the average total length of stay in in-patient units remains at 5.4 years. The charity is concerned that “there is still no robust cross-government strategy to ensure that health, social care, education and housing work together to stop inappropriate admissions and get people out of inpatient units”.

2,185 inpatients were in hospital at the end of January 2020*

32% of inpatients last had a review of their care over six months ago (700 people)*

Dan Scorer, head of policy and public affairs at Mencap, says this “national scandal has been allowed to continue for far too long”. He says NHS Digital’s latest figures indicate that “the government and NHS England are set to miss yet another deadline while over 2,000 children and adults with a learning disability and/or autism remain locked away in these ‘modern day asylums’ at risk of abuse and neglect”. Vivien Cooper, chief executive of the Challenging Behaviour Foundation, the charity for people with severe learning disabilities and behaviour challenges, says children and adults with learning disabilities and autism remain in inappropriate services, often far from their homes, because the Transforming Care programme has not delivered what was promised in 2012.

She says these individuals and their families are living with the consequences of “this failure”, as highlighted by this latest data, showing that incidents of restrictive interventions have increased, with 805 incidents on under 18s, including 80 incidents of prone restraint.

“It is clear that another target – set by the government itself, and the lowest end of it – will be missed again.” Cooper says it is time for “a new approach, focused on investment in community support and action to protect the human rights of children, young people and adults with learning disabilities and autism”. CQC response to concerns Responding to Care England’s call to end its current requirement for units to be six beds or fewer, Kate Terroni, chief inspector of adult social care at CQC told HealthInvestor UK that the regulator’s focus is “ensuring that people receive high-quality, person-centred care”.

“For providers of services that provide care, or that might intend to provide care in the future for people with a learning disability and/or autistic people who display behaviour that challenges, including those with a mental health condition, we will adopt the presumption of small services “usually accommodating six or fewer”.

She says this position is “in line with best practice as set out in ‘Building the Right Support’”. She stresses that the CQC “do not adopt ‘six’ as a rigid rule for providers of any service for people with a learning disability and/or autistic people”.

“We may register providers who have services that are small scale, but accommodate more than six people, if they can demonstrate that they follow all of the principles and values in ‘Building the Right Support’ guidance, and meet the fundamental standards and other relevant regulations,” she says.

CQC knows that “the provision of care to people with a learning disability and/or autistic people is complex”, she says. “There are multiple factors that affect outcomes for people and that is why we do not consider the size of service in isolation from other factors such as staff skills, effectiveness of management, and evidence base for the proposed care model. We share Care England’s concerns about the progress of delivering the ambition set out in Transforming Care.

“Our ‘State of Care 2018/19’ report focused on how an absence of community services for people with a learning disability, autistic people and people with mental health conditions meant some were being cared for a long way from their homes and not receiving the best outcomes.

“As we highlighted in our ‘State of Care 18/19’ publication, we call for consistent community provision to sufficiently meet the needs of people with a learning disability and/ or autistic people.” Inappropriate housing in hospital These people’s needs, extreme vulnerability, and the importance of ensuring a safe environment for them, were highlighted in 2011 with the Winterbourne view abuse scandal.

“People who should have been in shortterm care who were in a short-term crisis should have gone home. Instead they were staying on an average of five years,” says Scorer. And he says the NHS England 2015 strategy ‘Building the Right Support’ “about closing beds in these hospitals and developing the right housing in the community hasn’t happened”.

That more than 2,000 people were in inappropriately housed in hospitals in January this year according to NHS Digital, while the “CQC should be monitoring quality not the size of facilities”, prompted Care England to call for action, says Green. “The figure six is arbitrary – there’s no evidence for it,” he says. As a result “people are languishing in long-term hospitals with nowhere to go”.

The limit also affects care providers, as small services require “extra money to be invested in them – you don’t get the economies of scale”, Green says. ▶ Professor Martin Green, Care England We are concerned this policy is consigning people with learning disabilities and autism to inappropriate services

58% of inpatients in hospital at the end of January 2020 had a total length of stay of over two years (1,260 people)*

52% of inpatients have a date planned for them to leave hospital (1,130 people)*

Global investment manager AMP Capital agrees with Care England’s view. Julie-Anne Mizzi, AMP’s global cohead of infrastructure health says the business believes that “person-centred care is not about a one-size-fits-all, arbitrary standard”.

“In our approach to healthcare investments, there is a standout attribute which makes organisations attractive to us – quality of care. The satisfaction of the people we support depends on this same attribute.” She says maintaining a high-quality of care is “far more important than a standard setting”. “We do not believe there is a direct link between the number of beds and the quality of care provided, which has a stronger relationship with culture, talent management and support, and funding. Importantly there is no compelling evidence in any research of scale and applicability that ties quality of care to homes with no more than six beds – ‘the six-bed rule’.

“Furthermore, there is an increasing recognition that an individual’s care path should be tailored to their preferences, and the prescriptive nature of the requirements means there will be less choice for the people we support,” she says. Impact on individuals and healthcare The impact of the ‘six-bed rule’ on individuals of inappropriate placements can be devastating. One of the many cases that stand out for Green is of an individual who had lived in a residential home for many years, then had a breakdown and was hospitalised. “When they wanted to return to the home CQC wouldn’t register an extra bed,” says Green.

Scorer says many families are “battling to get loved ones out of these hospitals and back to communities. We know of cases of physical restraint, people being pumped full of antipsychotic medication, and kept in isolation”.

The limit on beds is also having an impact on healthcare as a whole. Green says people who should be in the community are in hospital ‘bed blocking’. And the limit is discouraging investment in community care, he suggests.

Currently, there are challenges associated with having a new home registered given the uncertainty and unpredictability of the implementation of registering the right support, Mizzi says. “This has meant that even in circumstances of strong user demand and encouragement from the local authority, we are unable to proceed in procuring new accommodation to meet the identified need,” she says.

“There is a well-intentioned emphasis on providing care in a community setting, avoiding rural or isolated settings; but this kind of setting may not actually suit a person who enjoys a quieter environment, and taking such a prescriptive approach will reduce the options available to the diverse individuals who depend on our services,” she says. Unfortunately, many people requiring long-term care are having to stay in hospitals for extended periods, rather than appropriate care settings. “Currently supply of care does not meet demand, and again, we believe the focus should ▶

We do not believe there is a direct link between the number of beds and the quality of care provided

be on supporting those providers who offer high-quality and personalised care to make these services available to more people, rather than putting in place arbitrary accommodation restrictions which are not a necessary or sufficient condition to guarantee high-quality care,” says Mizzi.

A call for change For Mizzi, the solution for autism and learning disability care is to provide choice to people with learning disabilities and their families as to their preferred type of accommodation.

Care England wants to see CQC focus “entirely on the quality of the service and to register the service on that, and not its size”, says Green. “We’re challenging CQC’s policy on the number of beds, and publicising it. We’re telling people about the impact it’s having on people’s lives, and if CQC won’t change its stance we’re asking the government to tell them to,” he says.

Mencap and the Challenging Behaviour Foundation have called for urgent cross-government action and investment in social care to enable children and adults to get the right support in their community. Scorer says the government must now deliver on its “broken promises and develop the community services needed up and down the country so people who have been locked away for years can get out of these modern day asylums and get back home, close to their loved ones, with the care and support they deserve”.

The National Autistic Society’s report makes a number of recommendations, including calling on the government to “set out and deliver an ambitious plan to move autistic people out of hospital and into the community – succeeding where existing programmes have failed”.

The charity also recommends NHS England commits to improving and expanding community mental health care for autistic people, for instance by introducing an autism-specific Improving Access to Psychological Therapies programme. And it wants NHS England to make sure autistic people get the mental health support they need from professionals who understand autism.

“We are raising this with CQC,” the autism charity says. “It’s vital that autistic people get to live in homes that are right for them – not just institutions by another name. So we’re asking how they will reflect this better in the final guidance.”

If calls for change are not recognised and realised, Green warns: “There will be no new services developed for people with learning disability and autism. And those people languishing in hospital will be joined by many more because nobody is going to invest in [this care] – they’re just not going to get a return on it.” n

New draft guidance – Care England’s perspective

Care England discusses the ‘Right Support, Right Care, Right Culture’ draft policy and its potential implications

“On 31 January 2020 CQC, via CQC, CitizenLab released two documents which concern the revision of the ‘Registering the Right Support’ (RRS) policy, which has now been renamed ‘Right Support, Right Care, Right Culture.’ CQC gave stakeholders a period of only nine working days to take a nine-question survey to provide feedback on the guidance.

“The draft guidance seems to be aimed at changing the direction of the original RRS guidance in that it appears to remove any reference to a rigid adherence to particular models or configurations of care, and appears to recognise that the approach required needs a stronger emphasis on the services which commissioners, the individuals and their families actually want.

“However, this proposed guidance does not address our continuing concern that CQC will neither register nor allow the continuation of registration for services over six beds.

“This is evidenced by key wording from the original RRS guidance being omitted from the new draft guidance, namely, CQC ‘does not wish to be overly prescriptive, and it is not our intention to create a one size fits all approach’.

“There is no compelling evidence in the NICE review, and indeed CQC has never provided any evidence, that care homes over six beds cannot provide good quality, person centred care. Our members can demonstrate compliance with the nine core principles of the National Service Model and have achieved ‘good’ and ‘outstanding’ ratings for services which are of more than six beds.

“Consequently, concern remains that the viability of the adult social care sector, including services for people with learning disabilities and autism, is under threat and that the model of care which is already meeting people’s needs and ensuring community based support will be eliminated without any evidential basis to justify such an outcome.”