In-patient Abuse: Autistic People and People with Learning Disabilities

Baroness Keeley Excerpts

Tuesday 18th April 2023 Commons Chamber

[Barbara Keeley (Worsley and Eccles South) (Lab)]

The abuse of autistic people and people with learning disabilities is not raised frequently enough in this House. I am glad to have secured this debate today to outline some of the issues and to stress the urgency of the situation. The Government’s record on the scandals I am about to describe has been appalling. I would like to begin with the experiences of two young autistic women who were detained in in-patient units commissioned by the NHS.

[Sir Robert Buckland (South Swindon) (Con)]

I am very grateful to the hon. Lady for giving way. Before she goes into those two harrowing cases, the Government set themselves a target to reduce the number of people in mental health detention—let us call it that—by half by March next year. At current progress, they will not hit that target until 2028. What would be her words to the Government to ensure that they get on with it and start releasing people back into the community?

[Barbara Keeley]

I thank the right hon. and learned Gentleman for his intervention. That is very much the sentiment I will be expressing in this debate tonight, but I would go further and say we cannot just accept continual targets. I will remind Members that the original target was to reduce to zero the number of people in inappropriate in-patient units, and I shall say that that is the target we should get back to.

As I said, I would like to begin with the experiences of two young autistic women who were detained in in-patient units commissioned by the NHS. Their stories were told recently in a powerful Channel 4 “Dispatches” programme, on which they and their families spoke with immense bravery about the abuses they faced. I encourage all Members to watch it.

Amy is a 22-year-old autistic woman who was, until recently, detained at the Breightmet Centre for Autism in Bolton, run by ASC Healthcare. The unit is supposed to provide care tailored to the needs of autistic people that would not be available on a general psychiatric ward. While she was detained at the Breightmet Centre, Amy said that her eating disorder actually worsened and that “it’s all about punishment”, not treatment. Amy reported that not a day went by when staff members did not use restraint and that the threat of violence was used to make patients conform. She said:

“They’ve chucked me about…they will nip you, they have pulled my hair out, they will push your wrists down. When I tell them it hurts they do it more”.

After staff at Breightmet were told that Amy had spoken out in the Channel 4 documentary, they took her phone away from her. When she got it back, she sent photos of dark bruises covering her arms.

Amy was moved to a different hospital and the Care Quality Commission has taken further enforcement action against the Breightmet Centre, stating that

“if there is not rapid, widespread improvement”

it

“will start the process of preventing the provider from operating the service.”

The CQC reports there are still 12 patients at the Breightmet Centre, and I am deeply concerned that they may be having similar experiences to the abuse suffered by Amy. It should not have taken a TV programme for the CQC to take action, because the Breightmet Centre has been placed in and out of special measures since 2019. Amy had to return there even after the CQC rated it as inadequate in 2022—it was rated not safe, effective, caring or well-led.

Danielle is another young autistic woman who told her story to the Channel 4 “Dispatches” programme. Like many autistic people admitted to in-patient units, Danielle has spent not weeks or months but years detained. In one unit she was 320 miles away from her family. Her mother Andrea reported that Danielle had lost half her life—13 years—spent in hospital in-patient units. While she was held at the Littlebrook Hospital in Dartford, Danielle was placed in solitary confinement for 551 days—more than 18 months. She was locked in a room with just a mattress on the floor and drugged heavily. According to the UN’s special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, confinement lasting for more than 15 days and lacking meaningful engagement constitutes torture. Danielle endured that for 551 days, a punishment not even inflicted on violent criminals. Yet Kent and Medway NHS and Social Care Partnership Trust paid to impose that treatment on a young woman whose only offence was to be autistic in a society that does not understand or support that diagnosis.

Solitary confinement in those units is so commonplace that data on the practice is collected and published by NHS England and broken down by the kind of restraint used, from chemical injection to prone physical restraint and seclusion. From those datasets we can see that more autistic people and people with learning disabilities are held in solitary confinement now than three years ago. That is a failure of care, and people such as Danielle are paying the price.

Danielle’s story gets even worse. Her mother Andrea told the “Dispatches” programme that during her stay at Littlebrook Hospital, Danielle was taken by staff members to areas away from cameras. She was then molested and raped. That is no isolated incident. Further investigation by the “Dispatches” team found that 18 reports of sexual assault and 24 reports of rape at Littlebrook Hospital were made to the police between 2020 and 2023. No charges have been brought in any of those cases to date, including Danielle’s case. The programme later showed Danielle on a ward in a general hospital being surgically fed through a tube, because she is now refusing to eat. Danielle’s mother said:

“After 13 years of trauma and neglect, she can’t see an end to it, so she’s been starving herself. She just wants this to stop.”

As the Minister hears these stories and listens to the words of those parents speaking out, I wonder whether she really believes that the right support is being given to autistic people. I hope that she can pledge action to help Danielle. I understand that Danielle needs housing so that she can move back to the community with support. Will the Minister look at her case, to avoid Danielle being shifted from facility to facility? Her life seems to be at risk. I have discussed the case with the family’s MP, the hon. Member for Maidstone and The Weald (Mrs Grant).

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Member for Worsley and Eccles South (Barbara Keeley) on bringing this subject forward. She has outlined two tragic and poignant cases, and I commend her on the respectful way that she has done so. In Northern Ireland, the Muckamore inquiry recently brought to light the abuse of people in care. I had a mother in my office whose heart broke when it happened to her child. Some 2,045 people are detained in in-patient settings, and a lot of families only want the best for their loved ones. Does the hon. Lady agree this problem does not just pertain to the individual but affects the entire family circle? That is the wider aspect that we need to look at.

[Barbara Keeley]

I very much agree. What the hon. Gentleman says is true; I have seen many reports from Muckamore and I know that there are similar issues. It is desperate for the parents and the families because they rightly sought help for their children, but they ended up being abused and their lives are ebbing away—particularly those with eating disorders, who are not getting the support that they need.

The truth is that the abuses experienced by these two young women have been mirrored in similar scandals across the country. There was a toxic culture of abuse at the Edenfield Centre, revealed by BBC “Panorama” last September. There were the preventable deaths of three adults with learning disabilities held at Cawston Park hospital, who were subjected to torture and neglect, including the appallingly named “crucifix restraint”. At Cygnet Yew Trees hospital, staff members were arrested after reports that they kicked, slapped and dragged around the autistic women and women with learning disabilities being held there. Before that was the BBC “Panorama” exposé of the scandal at Whorlton Hall, which I cannot discuss in any detail due to ongoing legal cases.

All those reports were preceded by the scandal at Winterbourne View, revealed by BBC “Panorama” in 2011. Members will remember the scale of the outcry when that programme was broadcast. There was a feeling then that something might change. I remind the Minister that the coalition Government actually committed to closing all inappropriate in-patient beds for autistic people and people with learning disabilities by 2014.

At one time, reports and investigations into the scandals gave rise to the hope of change, but despite the relentless efforts of journalists, charities and activists, the criticisms reported in the CQC’s inquiry into Winterbourne View all that time ago are as true today as they were 12 years ago: there is a

“systemic failure to protect people or to investigate allegations of abuse”.

Each of the scandals I have outlined across the decade, from the events at Winterbourne View to those at the Edenfield Centre, shows striking similarities. I encourage Members and the Minister to read the safeguarding adults review on Whorlton Hall and to decide whether anything has changed since the inquiry into Winterbourne View, despite all the promises of action.

More recently, we seem to have entered a phase of total apathy. Each scandal that hits national TV or the press results in a more muted and defensive response from the Government. As calls to address repeated failed targets grow more desperate, less and less appears to be happening to rectify the situation.

In February, NHS England quietly published a report analysing 1,770 individual reviews of the care of autistic people and people with learning disabilities, including children, who were detained in in-patient services. The report was commissioned following the tragic deaths of Joanna, Jon and Ben at Cawston Park. It found evidence of high levels of restrictive practice, that people’s medication was not always reviewed in a timely way and that more than half the people were being detained a long way from home. Most concerningly, the report found that 41% of people did not need to be in hospital at all. NHS England stated that many people could not be discharged because there was no adequate care provision in the community and because staff did not always have the training necessary to support people’s transfer from hospital. These findings are a deplorable indictment of the Government’s failure to act.

We are now 13 years on from the inquiry into Winterbourne View and not a single Government target to reduce the use of in-patient beds has been met, as referred to by the right hon. and learned Member for South Swindon (Sir Robert Buckland) in his earlier intervention. After the coalition Government’s ambition to close all in-patient beds by 2014, a succession of watered-down targets have been announced over the years, none of which has been met. As the right hon. and learned Member said, the goal is now to close 50% of in-patient beds by March next year, but it looks impossible for the Government to meet even that much-delayed target. The latest data indicates that bed numbers will reduce not by half but by around only a quarter in 2023, compared with the 2015 benchmark.

Over the last three years, even the meagre progress made earlier has stagnated. The number of autistic people and people with learning disabilities in mental health hospitals has actually increased since the publication of the Government’s Building the Right Support action plan last July, which was meant to drive cross-Government action.

There is also a problem with the data itself, whereby data for past months is retrospectively amended, sometimes by quite large margins. That makes it difficult to understand with any accuracy how many people are being detained. Getting the data right really matters. When the risk of abuse is as high as the evidence suggests, it is a dereliction of duty to have so much variation in data collection. How are the Government supposed to measure progress when the targets keep shifting?

A similar story can be told when it comes to financial investment in the Building the Right Support agenda. The Government’s own review from last summer stated that

“the limited ability to analyse financial data…to provide a national perspective is a significant barrier to the effective oversight and management of the BtRS programme overall.”

An answer to my written parliamentary question confirmed that the Department of Health and Social Care did not hold data on how much money had been spent on developing community services for autistic people and people with learning disabilities, either since 2015 or since the Winterbourne View scandal in 2011. The data that was provided instead of the data I asked for showed that investment in community services had actually fallen between 2021-22 and 2022-23, from £62 million to £51 million, and that funding for discharging long-stay patients has remained frozen, despite the fact we now have rocketing inflation, meaning soaring costs to providers. That financial picture is clearly unacceptable.

In her response, the Minister may want to point to the draft Mental Health Bill. While the draft Bill includes some provisions to address the detention of autistic people and people with learning disabilities, concerns have been raised by charities that the Bill must be significantly strengthened if it is to achieve its aims. There are also concerns that the Bill will take years to come into force and will not end the scandal on its own, without urgent investment in both social care and mental health services.

In the meantime, last year’s Building the Right Support action plan is woefully inadequate. Not only was it published a full 11 years after Winterbourne View, but it is vacuous, it is unambitious and it has been derided by organisations working in the sector. I believe that to call it an action plan is absurd. Instead of a fully funded strategy for caring for people at home rather than in hospital, the Government have established the Building the Right Support delivery board, which is responsible for monitoring the commitments in the Building the Right Support action plan. After so many years of allowing mistreatment to continue, it seems pathetic that the best system of accountability the Government can come up with is a delivery board that I have discovered has met for only six hours in the 22 months since it was established.

We know from more than a decade of reports and evidence that investment in social care, in community support and in the workforce is critical to reducing the number of autistic people and people with learning disabilities who are detained in inappropriate in-patient settings. However, the Government have just announced that they are halving the already pitiful £500 million budget for the social care workforce for the next three years. I believe that that will have a severe impact on a workforce who are already overstretched and are operating with a vacancy rate of 11%. I ask the Minister what assessment her Department has made of the repercussions that the cut to the social care workforce budget will have on the quality of care.

I could go on listing the repeated failures of successive Conservative Governments to do anything about the matter. The fact is that well over 2,000 autistic people and people with learning disabilities are still being held in inappropriate in-patient units. Approximately one in 12 are being held in units rated inadequate by the CQC. Some 40% have been there for more than 10 years. Fewer than ever have a planned date of discharge. Many people are being detained far from home. The risk of abuse is shockingly high, as we saw in the cases highlighted by Channel 4’s “Dispatches” programme, yet at every turn Government Ministers have lacked any humility. Nor have they made any apology for their abject failure to get a grip on this national scandal.

I hope the response this evening will be different. Will the Government now finally stop choosing to ignore the issue? Will the Minister instead offer assurances that her Department will take urgent action to end the inappropriate detention of autistic people and of people with learning disabilities, which is destroying the lives of so many people detained and their families?

[The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)]

I thank the hon. Member for Worsley and Eccles South (Barbara Keeley) for securing an Adjournment debate on this really important issue. I hope she will see from my response that we are by no means complacent about it. It is appalling to see reports of the care and treatment that some autistic people have experienced, and we absolutely take them very seriously.

As the Minister responsible for patient safety, I have made it clear to the House that everyone in an in-patient mental health facility is entitled to high-quality care and treatment and should be safe from harm. These are very vulnerable people who should feel safe and looked after in any in-patient setting: that applies to all patients admitted, but particularly to people with a learning disability and autistic people.

When in-patient care is absolutely necessary, it needs to provide a therapeutic benefit. It should be high quality, it should be close to home, and it should be as unrestrictive and for as short a time as possible—we have been very clear about that. Abuse cannot and will not be tolerated. That is why we are committed to taking steps at a national level to prevent the abuse and poor treatment of people with a learning disability and of autistic people in in-patient settings.

As we announced in January, the Government have commissioned a rapid review, independently chaired by Dr Geraldine Strathdee, of mental health in-patient settings. The review is focusing on how we use data and evidence, on how we respond to complaints, on how we listen to feedback and on how whistleblowers can raise the alert to identify risks to safety in in-patient settings.

I have met many Members across the House with concerns about in-patient care in their constituency. We absolutely take the issue seriously. We want to ensure that the right people get the right information, so patients get the care and support they deserve, and to ensure that if there are concerns, we can identify them as early as possible.

[Barbara Keeley]

There is obviously a considerable amount of detail in both what the Minister is saying and what I covered in my speech. However, the Breightmet Centre in Bolton, where Amy was detained, has been in and out of special measures, and it is inadequate. Amy was sent back to the unit and abused further, although the centre had been declared inadequate across all its settings. I am therefore finding it difficult to align what the Minister is saying with the actual situation. The list of scandals that have emerged since Winterbourne View extends across the country. We keep finding extra hospitals in which people have been abused, including Littlebrook Hospital in Kent. The CQC is taking some action, but these places are still open, they still have patients, and patients are being abused. How does what the Minister is saying line up with the reality out there?

[Maria Caulfield]

As I have said, we instigated a rapid review in January to examine the national picture across England because we wanted to see what was being done in in-patient settings. This will include looking at the data concerning the use of restraints, the safety of patients, how concerns are flagged and how many patients are being treated out of area, because that does increase the risk. However, the review—which will report very soon—does not prevent us from investigating further particular concerns about particular in-patient units, and once it has been published we will come to the House to update Members in response to many of the points that the hon. Lady has raised about specific in-patient settings.

[Barbara Keeley]

As I have said, there has already been a review. NHS England published a report on the 1,770 individual reviews of the care of autistic people and people with learning disabilities, including children, who had been detained. As I also said, that report was commissioned following the tragic deaths at Cawston Park, and revealed that there were high levels of restrictive practice and that 41% of people did not need to be in hospital at all but could not be discharged.

Does the Minister not accept that things are going seriously wrong, and that there is not the necessary provision in the community or the necessary training of staff to work with people? I cited the case of Danielle, and I hope the Minister will look at that case, along with the hon. Member for Maidstone and The Weald (Mrs Grant), because it is an example of someone being moved around for 13 years of her life, from one inappropriate facility to another. We are destroying lives, in many cases young people’s lives, because this often starts with children and teenagers.

[Maria Caulfield]

I will come on to what we are doing to try to keep people out of hospital, and to get others discharged. We fully recognise that there are too many people in in-patient settings at present, but we also want to ensure that when people are in an in-patient setting and need to be there, the service is safe and they do not come to harm.

NHS England has established a three-year quality improvement programme which seeks to tackle the root causes of unsafe, poor-quality inpatient care. We all acknowledge that there has been practice that has caused harm to patients. We want to see the picture across the country, and then look at specific trusts that are not providing the standard of care that patients and their families expect. Baroness Hollins is overseeing independent care and treatment reviews relating to people in long-term segregation, and a senior intervener pilot has been undertaken to help individuals in the most restrictive settings to be moved towards discharge. Work is being done to examine the specific units about which we have concerns.

The CQC, which the hon. Lady mentioned, has a central role in identifying cases of poor in-patient care and taking immediate action when that is necessary. We acknowledge that some settings are not delivering the high quality of care that everyone deserves, and we want to ensure that we are setting standards so that units, integrated care boards and commissioners are aware of the standards that should be expected and can raise concerns when they are not being met.

[Barbara Keeley]

As I said towards the end of my speech, around one in 12 of the 2,000 autistic people and people with learning disabilities being held in these inappropriate units are being held in units rated by the CQC as inadequate. The Breightmet Centre in Bolton, run by ASC Healthcare, has been in and out of special measures and is rated inadequate. Why is the Minister allowing people to be held in those units? She is talking about setting standards, but that is not an adequate standard. Would it not be a good place to start to say that no one with autism or learning disabilities can be held in a unit that is rated inadequate? That is an incredibly low bar.

[Maria Caulfield]

Admissions to services that are rated inadequate are an absolute last resort, and they should be being done with patients and their families being consulted and consenting to being placed in those units. We are minimising the number of new admissions to a unit that has been rated inadequate and we are working with the CQC to see how those units can be better supported to improve the quality of the service they offer.

The hon. Lady touched on funding. We are investing £121 million in this financial year across community support for people with learning abilities and autistic people as part of the NHS long-term plan. We are recruiting 27,000 mental health workers and we are on track to meet that target to increase the support available in the community. It is absolutely the solution to look after people in their communities with the care that they need so that admission to hospital—which, as she points out, is often not just for days or weeks or even months—is the absolute last resort.

The hon. Lady touched on the Building the Right Support action plan. We are drilling down on implementing the actions. We have short-term and long-term actions, and some of the work has had an effect already. At the end of February this year, the number of people with learning disabilities and autistic people in a mental health in-patient setting was 2,045, so we are seeing a reduction. That is a net decrease of 860 people, or 30%, since March 2015. Unlike someone with a physical health need, which can be quite complex in terms of planning their discharge, it is not just a case of finding people homes; they often have to have the right support in those homes. It is not just a case of providing them with support, because they often need complex support. The in-patients who still need to be discharged are the more complex cases, who, as the hon. Lady has pointed out, have often been in hospital for years. Adapting to moving back into the community is not an easy process for them, and that is why it is taking time to get them the packages of care that they need.

[Barbara Keeley]

I just wonder how the Minister can reconcile the figures as if they were increasing when I have told her that we found, through written parliamentary questions trying to get to the financial picture, that the investment in community services actually fell between 2021-22 and 2022-23, from £62 million to £51 million. With rocketing inflation and soaring costs to providers, that funding needs to increase.

I recommend that the Minister consider the issue of dowries, as was suggested in the Health and Social Care Committee’s report on this issue a few years ago. Time and again we find situations where a county council or urban council responsible for social care does not have the funding to provide that support. Millions and millions are being spent. We do not even know how much these placements cost, but some of them are very expensive. I am sure the Minister is aware of how expensive they can be. Decades ago, when we discharged people from long-term psychiatric institutions, a dowry accompanied them. We talked about Danielle’s case. If there were a system of dowries, Kent County Council could have the funding to provide her with housing and support. I have never understood why such a system has not been brought in. We included that in our Select Committee report. Cost-shunting is really a factor here. Local authorities do not have to fund an NHS England place, and that is part of the problem, yet we never get around to tackling that.

[Maria Caulfield]

The hon. Lady is right; a number of organisations are responsible for caring for people in the community, and it is often about pulling those organisations together. That is why we have the integrated care boards, which now have responsibility for looking after people with learning disabilities or autism and helping with their discharge.

[Barbara Keeley]

It is not just about responsibilities; it is also about the budget to go with those responsibilities. If the budgets were transferred from NHS England, which is shelling out millions for these inappropriate units, to the ICBs, I could see it working. It certainly worked all those years ago for discharges into the community. I was a councillor and vice-chair of social services in Trafford, and we might get a dowry of £1 million to settle someone from a long-term psychiatric hospital. That is the sort of funding we need to be thinking about, and it does not happen.

[Maria Caulfield]

A key reason why we sometimes find it hard to discharge someone from an in-patient setting is the housing element. We have capital funding available. I recently met ICB chairs and chief executives to encourage them to ask their local councils—particularly district councils, which do the planning element—to consider the funding that is available. The county councils, the upper-tier authorities, are often responsible for care, so it is about joining up the funding, but we are not building the right type of housing to support people back into the community. The capital funding is there. Sometimes one of the frustrations is making sure that the money flows with the patient so that they are able to get the care they need, but sometimes the money is there and it is about joining up the services to make it happen.

[Barbara Keeley]

Is the Minister saying that there is unspent money that could be used or transferred to local authorities? If so, how much is available? I have asked written questions about this, but it seems to me that the money has tailed off. Whether it is money to help pay for housing or money to pay for workforce improvements, the Government have halved the funding. People need housing and they need support, and those elements have been cut back.

[Maria Caulfield]

There is capital funding available to build supported housing for people with a learning disability or autism, which is why I recently encouraged a number of ICBs to make bids for funding at a local level.

We have made good progress on reducing the number of people with a learning disability in mental health hospitals. We are not where we want to be. Of course, we want every person who is able to be discharged to be either at home or in the community. I recognise that there is work to be done, but the number of in-patients with a single diagnosis of a learning disability and the number of in-patients with both a learning disability and autism are down from March 2015.

I am very happy to keep the hon. Lady updated on the work we are doing. We will be meeting the Building the Right Support team again very soon for an update on progress, but I recognise her point. The two elements for me are that we need to get more people out of hospital, whether by providing the care and support they need through the 27,000 extra mental health staff and by focusing on building resilience in the community, or, when someone needs to be an in-patient, by making the experience as safe and as therapeutic as possible. I have previously made it clear from the Dispatch Box that we will not accept poor care in in-patient settings. Once the independent rapid review reports back very soon, we will set out the next steps to improve safety in such settings.

[Barbara Keeley]

The Minister has mentioned the Building the Right Support delivery board, and I have said that I see it and the plan as vacuous and unambitious. It has been derided by the organisations in the sector that work with it. There is not a lot of confidence in it. I have also quoted to her something that we found out by asking questions about it: the delivery board, which is meant to be driving cross-departmental Government action on this important area to those 2,000 people and their families, has met for only six hours in the 22 months since it was established. How is that enough? It is not exactly a powerhouse is it, with six hours of meetings in all that time?

[Maria Caulfield]

The work goes on in between the meetings. The meeting reports back to update members of the board on specific areas, but the work is happening on a daily basis to both improve the safety and quality of the care that patients are receiving, and to get patients home where they are able to be discharged. That is our absolute focus. I will be able to update the hon. Lady further once the rapid review is completed very soon, and I absolutely take her points on board.

I do not want anyone to be in an in-patient setting unless they absolutely have to be, and if they are in such a setting they should be receiving good-quality, safe care, so that family members and friends can be reassured that their loved one is being looked after well. No one wants that more than me.

Question put and agreed to.