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

Debate between Maria Caulfield and Barbara Keeley

Tuesday 18th April 2023 Commons Chamber

[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.

--- Later in debate ---

[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.

Ambulance Services and National Heatwave Emergency

Debate between Maria Caulfield and Barbara Keeley

Wednesday 13th July 2022 Commons Chamber

[Maria Caulfield]

Yes, and I thank my right hon. Friend for raising that point. Different response times are required, depending on the reason for the call. Strokes would be a C2 emergency, for which the target is 18 minutes. The latest figures we have are from May, when we were performing better than in April. The figures are not where we want them to be, but we are seeing month-on-month improvements. For C1 and C2 cases, which need urgent treatment as soon as possible, particularly for strokes, every minute counts and we want to see further improvements in those times.

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

The Manchester Evening News is reporting that the North West Ambulance Service has raised its operational pressure level to “critical incident” level, which indicates a potential for failures as ambulance services try to cope with extreme pressure. A&E departments at the Royal Bolton and Stepping Hill Hospitals have admitted that they are extremely busy, with long queues of ambulances at some times. The Minister did not even mention social care in her response, which we know is so broken that it adds to delays and discharges. Twelve years of Conservative mismanagement and neglect have left those services, on which my constituents rely, so vulnerable. What does the Minister have to say to the patients suffering as a result?

[Maria Caulfield]

I am sorry that the hon. Lady did not hear my response. I specifically mentioned social care as well as the integrated care boards that we have set up to bring health and social care together—I think Labour Members voted against that. As I said, one factor affecting ambulance delays is the bed occupancy issue. Part of that—not all of it—is about delayed discharges and lengths of stay are 16% higher. We have a plan for fixing social care and it is unfortunate that Labour Members voted against it.

Endometriosis and Polycystic Ovary Syndrome

Debate between Maria Caulfield and Barbara Keeley

Monday 1st November 2021 Westminster Hall

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

I thank the hon. Member for Coventry North West (Taiwo Owatemi) for securing the debate, as well as all the petitioners who made it happen. I join everyone in paying tribute to Sir David Amess; I know he would have been here, holding my feet to the fire on what I was going to do about the important issues that have been raised.

Members on all sides of the House have spoken about the challenges faced by women suffering from endometriosis and PCOS. I pay tribute to the hon. Member for Streatham (Bell Ribeiro-Addy), who could not have put it better on not only the struggle for diagnosis, but the trauma of going through treatment. That is not an uncommon experience, unfortunately. There are serious issues to address. As my hon. Friend the Member for Thurrock (Jackie Doyle-Price) said, the conditions affect a significant number of women across the country. We are not talking about a small problem; its effects are on a wide scale.

Members have spoken about the pain, the heavy periods or lack of periods, and the facial hair or hair loss. However, it is about not only the symptoms, but the long-term implications. Fertility is an issue for both conditions, but they also affect relationships, the quality of life and mental health. The effects are wide-ranging.

It is unacceptable that the average diagnosis time for endometriosis is seven to eight years and that 40% of women take 10 or more appointments even to get to the stage of getting tests done and being diagnosed. It is imperative to have a greater focus on women’s health and to address some of those inequalities.

Although hon. Members have rightly said that this is not just about fertility, if it is about fertility for some women, those seven to eight years may be the only chance they have. That is seven to eight years too long. That is why we are embarking on England’s first women’s health strategy, which will set out a new agenda. I can confirm that it will include a section on gynaecological conditions, including endometriosis and polycystic ovary syndrome, and it will look at the research element. In the short time I have, I cannot expand too much, but I will announce more details shortly, because we hope to publish that before the end of the year.

I know that many, many women, men and families will be listening to this debate, and I want to put it on the record that I hear the concerns and issues that are being faced. I have my listening ears on and we will be taking steps to deal with some of the issues. The NICE guidelines on endometriosis are really clear. They list the symptoms that should be picked up and addressed, and that should alert healthcare professionals to the need to refer women, not gaslight them. It is concerning that, despite the NICE guidelines, many women are struggling in the way that they are. For PCOS, the clinical knowledge summary highlights symptoms that should be picked up and that should be flags for referral and care.

I take the point of the hon. Member for Belfast East (Gavin Robinson). We heard from the hon. Member for Arfon (Hywel Williams) that, when there are issues in Wales, women can access services in Liverpool. I am happy to meet the hon. Member for Belfast East to see what options are available for women in Northern Ireland.

In the short time I have, I want to turn to research—the subject of today’s debate. We have a world-class research system, as the vaccine rollout has shown, but we know that women are under-represented generally in research, whether that is older women, women from ethnic minority groups, women of childbearing age or women with disabilities. There is evidence that research is not addressing women’s issues. It is crucial that we have an evidence-based approach to dealing with endometriosis and PCOS because that is how we will ensure that the gold standard of treatment is being followed and that women know what they should expect. That is half the problem: women are in the dark about how they should be treated and their condition managed.

Funding is available. Over the past five years, the National Institute for Health Research has funded £8.52 million of endometriosis research. There is a £2 million trial on peritoneal endometriosis, looking at surgery versus non-surgical interventions to manage chronic pain. There is a study of endometriosis in primary care and the experience of both GPs and patients to see what is going wrong at the diagnosis stage. A practical toolkit has been put together to help patients and clinicians. We are also funding a study interviewing up to 80 women about what it is like to have a urogynaecological condition and the experiences they go through. There is £6.65 million of research into PCOS, including a £2 million randomised control trial looking at fertility options for women whose eggs are not being released from their ovaries.

Research is happening. My plea to researchers is that funding is not the barrier. There is a really robust system whereby research is presented, whether from clinicians, researchers, charities or other organisations, and judged on its merits in terms of what it is trying to achieve. The funding envelope is not the barrier. I encourage those who want to do research to come forward. If that is not happening, I am very happy to work with the APPG to find out where the gaps are and, if the research is not being accepted or funded, where we can do better.

[Barbara Keeley]

The Minister has not yet covered the serious point I made earlier about the backlog in gynaecology. Some 80% of women who are confirmed or suspected to have endometriosis have had their NHS appointments postponed or cancelled because of the pandemic. In my remarks, I quoted somebody who will now have to wait 18 months to two years for her surgery. That is not acceptable.

[Maria Caulfield]

I absolutely take the hon. Lady’s point. In the spending review, money for elective procedures was allocated to clear some of that backlog. People are waiting a long time, and every effort will be made to clear the backlog as soon as possible.

I reassure colleagues that we want to ensure not just that there is an evidence-based pathway for both endometriosis and PCOS in the NICE guidelines, but that it is followed in clinical settings, so that women know what to expect; in clinical education, to improve both undergraduate and postgraduate training, so that clinicians have the knowledge that they need on both conditions; and in primary care, to ensure good robust knowledge among GPs about both conditions, which are not just about bad periods or abdominal pain, and about the referral pathways that should be followed. On school education, it is so important that young women know what is and is not acceptable in relation to both conditions, so that they are pushing GPs rather than waiting seven to eight years for diagnosis or 10 to 12 appointments for an answer.

Research can make a real difference in a number of areas. Before I hand back to the hon. Member for Coventry North West, I reassure colleagues that funding is available. I urge all researchers who want to conduct research in this area to submit applications and bids, because there is no way that we will deal with many of the issues that have been raised today without them.