Mental Health Bill [HL]

Baroness Keeley Excerpts

Committee stage
Wednesday 22nd January 2025 Lords Chamber

[Baroness Tyler of Enfield (LD)]

My Lords, I will speak to Amendment 62 in this group, which is in my name, and I will try to be as brief as possible. This group is all about the statutory care and treatment plans, and I very much welcome them. They are a very positive part of this legislation and should help patients achieve recovery and hopefully discharge from mental health in-patient units as quickly as possible.

My amendment seeks to ensure that individuals who are turning 18 during a care and treatment plan have their plans reviewed to ensure that there is continuity of care when transitioning from child to adult services. I spoke earlier about the tricky issue of transitioning from child to adult services. It is important for three reasons. Young people aged 16 to 25 experience high rates of mental health problems but are less likely to access the support they need; young people often experience tricky transitions, meaning that too often they fall through the gaps—we have heard so many stories about in this Chamber in the past; and, again as we have said earlier today, young people really should have a say in their care and treatment.

We know that there is a high level of mental health need among young people in the 16 to 25 age group and that it is going up. I have no wish to return to the earlier debate about whether that rise is real, but the numbers according to NHS Digital are very much on the increase. So, while 16 to 25 year-olds are experiencing high levels of need, they are often having real difficulties accessing support. It is sometimes talked about as the treatment gap, which is what the noble Lord, Lord Stevens, talked about earlier on, and it is far wider here than for other age groups.

These poor transitions between CAMHS and adult services are generally the problem because, after someone reaches their 18th birthday—which is the upper limit for CAMHS—young people too often face a real cliff edge when trying to access mental health support. They are no longer in the age range for CAMHS and simultaneously may not reach the threshold for adult services. Effectively, it leaves young people in limbo, with no access to the mental health support they require.

There is a range of reasons for these challenges, including poor information and, very importantly, a difference in treatment models. While children’s services are generally seen as more nurturing, with a focus on treating developmental and emotional disorders, adult services in contrast focus on treating severe and enduring mental illness, meaning that young people with these diagnoses are less likely to be accepted. Just as I have mentioned, the high thresholds for support often result in young people being told that they are not ill enough for the services they need, so unfortunately things get worse and they end up being detained. Without that support during transition, young people can experience all sorts of worsening symptoms and other life outcomes. That is the rationale behind my Amendment 62.

I will mention another couple of amendments in this group that have my strong support. Amendment 64, in the name of the noble Baroness, Lady Keeley, from whom we have still to hear, really emphasises the critical importance of ensuring that, where young carers are involved in a family situation, they are identified, particularly by adult mental health practitioners, who may not have them in mind first and foremost, that people proactively look for them, and then that the young carers—who are often hidden, with their needs only identified when there is a crisis—are supported. That amendment has my full support.

Lastly, I support Amendment 59, in the name of the noble Lord, Lord Davies. At this point—because I have not done it yet—I refer to my interests in the register, both as a member of the Financial Inclusion Commission and president of the Money Advice Trust. I absolutely support what the noble Lord said about the importance of these plans, including matters to do with finance. The links between money problems and mental health are now well proven and this legislation should reflect them. The Bill provides a once-in-a-generation opportunity to ensure that people’s holistic needs, including finances, are considered as a key part of supporting recovery from a mental health crisis.

[Baroness Keeley (Lab)]

My Lords, I rise to explain the significance of Amendment 64 in my name, which aims to cover the situation of both young carers and young children in a family where a care and treatment plan is being prepared for their parent. I thank the Carers Trust for suggesting this amendment and providing a briefing on this issue. I also thank the noble Lord, Lord Young of Cookham, for his support for the amendment and, of course, the noble Baroness, Lady Tyler, who has just spoken of her support for it.

Briefly, the amendment adds the requirement that a practitioner preparing or reviewing a care and treatment plan must ask whether there are children in the family and take actions to respond if the children need help or protection from harm. This amendment would, as I said, cover young carers, but it would also cover young children where there may be safeguarding concerns—a topic which the Child Safeguarding Practice Review Panel highlighted as a theme in its latest annual report.

As the noble Baroness, Lady Tyler, just touched on, young carers are so often hidden, and often their needs are identified only when there is a crisis. Even then, the extent of their caring role and the impact it has on the child’s development may not be recognised quickly or fully assessed. This amendment would help to ensure earlier identification of children who might be in need of information, support or protection from potential harm. It would mean staff asking the right questions early on to ensure that the right information is recorded and actions taken. It would help with adequate signposting of information and a chance to offer appropriate support to avoid a crisis or manage it appropriately.

The amendment also mirrors the new wording in the Working Together to Safeguard Children statutory guidance, which covers adult social practitioners:

“When staff are providing services to adults, they should ask whether there are children in the family and take actions to respond if the children need help or protection from harm. Additional parenting support could be particularly needed where the adults have mental health problems”.


There is evidence that having a parent with a mental health problem is one of the biggest risk factors for a first episode of major depressive disorder in children and adolescents.

This is not inevitable. Research suggests that intervention can enhance parenting skills in households affected by parental depression, and it can change the way that children cope. In turn, this can reduce the risk of children internalising problems that may threaten their life chances. The amendment is designed to enhance the ability of agencies working individually and together to identify and respond to the safeguarding needs of families. It is about supporting the challenging work of finding out what is happening to children and anticipating risks and harm, of knowing when action is needed. In most cases, children receive the support, help and protection they need, but sometimes children are seriously harmed or, worse, they can die because of neglect.

Policy initiatives in recent years have called for a wider family focus on safeguarding children so that all staff recognise that meeting the needs of family members who may put children at risk benefits the child, the adult and the family as a whole. This amendment would support those efforts. The amendment is in keeping with guidance from the Social Care Institute for Excellence to “Think child, think parent, think family”, to ensure that the child is heard and their needs are met.

The Carers Trust believes that the amendment would unlock additional support from mental health professionals to work with parents and children to enable the child to have age-appropriate understanding of what is happening to their parent and information about what services are available for them in their situation and how they can access them.

To illustrate the need for the amendment, I have two short case studies. Aidan was four when his mother was first sectioned under the Mental Health Act. Throughout his childhood, Aidan’s mother was regularly sectioned and would sometimes be in hospital for a number of months. There were many occasions when the police were involved because his mother had disappeared, which was particularly scary for Aidan. In his words:

“To me, you only ever saw the police if you’d done something wrong, so I remember when they turned up at our house, I thought mum was in trouble”.


Seeing his mother being taken into hospital on a regular basis meant that Aidan had lots of questions and worries. In his words again:

“There were so many times where I wondered whether mum would ever come home. I knew she’d been sectioned but I had no idea what that actually meant or if she would ever get better”.


Staff at the hospital who were treating Aidan’s mother would regularly see him visiting. Despite this, none of the staff there told Aidan or his father about support that might be available or asked whether Aidan might need any help. It was only when Aidan was 12 and his attendance dropped at school that he was identified as a young carer.

The second case is Vamp’s story. This is a pseudonym chosen by her family. The case study is taken from a recently published child safeguarding practice review which found that a 13 year-old girl died as a result of taking drugs sold to her in a park. It was identified that her mother had had a period of serious mental illness, and that illness was identified as the catalyst for things deteriorating for the young person. Tragically, two years on, the young person had died. This is taken from the relevant extract from the child safeguarding practice review:

“Vamp’s mother did not feel that her daughter had been a young carer … as the mental illness was short term. However, Vamp’s sister described the situation as being so difficult for both. When their mother was discharged home from hospital, it was only Vamp and her mother at home. Vamp’s sister was only a young adult, and with her own baby to care for. She … said she felt that no one checked in on their mother. Vamp’s sister … said that professionals expected her mother to manage to parent Vamp, which she was not able to do alone, she needed professional help”.


This is a simple but important amendment to protect young carers. I urge my noble friend the Minister to consider it, and I commend the amendment to the House.

[Lord Young of Cookham (Con)]

My Lords, I have added my name to Amendment 64, in the name of the noble Baroness, Lady Keeley, and shall speak briefly in support. I have not contributed to this Bill before, but I have sat through many of the debates. Without sounding pompous, it struck me that this was our House at its best, dealing with a complicated Bill in a sensitive and non-partisan way and drawing on the unique expertise we have in our House.

As I listened to the earlier debates on detention and community treatment orders, I asked myself how the children in the families concerned would be informed and what the impact on them would be. We have just heard from the noble Baroness, Lady Keeley, the impact on Aidan when his mother was sectioned. By definition, the people covered by the Bill are vulnerable people; many of them will have carers, and many of those carers will be young carers. As the noble Baroness has just said, this amendment simply helps improve the earlier identification of children of parents being detained under the Act and to ensure that they have access to support, if they need it, and are safeguarded where necessary.

The 2021 census showed that there are 50,000 young carers caring for over 50 hours a week. An astonishing number—3,000 of them—are aged between five and nine. The Carers Trust has shown that those young carers at school are at risk of a poorer attendance record, lower academic achievement and more liable to social isolation and, sadly, bullying, if they are not identified early. As the noble Baroness, Lady Keeley, just said, having a parent with a mental health problem is actually one of the biggest risk factors for depression in children and adolescents. But it is not inevitable: research suggests that intervention can reduce that risk and change the way that children cope.

As a vice-chairman of the APPG on Young Carers, I know that we took evidence last year from young carers, and we heard that on average it takes three years for a young carer to be identified, with some of them taking over 10 years before being identified. Improving early identification is one of the top priorities of the all-party group, so that they can access support and not be negatively affected by their caring situation.

This amendment will help to tackle the issue, which is reported by young carer services, that many potential young carers are not identified by adult mental health services. For example, one young carers service, the Young Carers Alliance, reported that 20% of the young carers it supports are supporting a parent with a mental illness, yet they did not receive a single referral from the adult mental health services in the space of an entire year.

In our inquiry, we also heard from the charity Our Time how, when it comes to identifying young carers by mental health professionals, we are way behind countries such as the Netherlands and Norway. Both those countries have introduced requirements for health professionals to consider whether adults with mental health problems have children. This referral may not be a one-way process; if the child is a carer, he or she may have an insight into the events that trigger an episode in the parent and may actually help the professionals to identify an appropriate treatment pathway.

A final benefit of this amendment is that it would help adult mental health in-patient units ensure that they are complying with the duty under Section 91 of the Health and Care Act 2022 to consult with any carers, including young carers, before discharging an adult from hospital. Again, last year, we heard of patients being discharged without the young carer being informed, often where they were the principal carer. For these reasons, I hope that the Government can support this amendment. I look forward to the Minister’s reply.

--- Later in debate ---

[Baroness Merron (Lab)]

The noble Baroness is right to raise that point. This is the difference between legislation and practice, and we have to bridge that gap. We are very alive to the point she makes, but the important point about this amendment is that we are trying to include all those whom the patient wants to be involved, not just restricting it to parents. I take the point she has made and will, of course, ensure that we attend to that. I would say that that is, as I say, more a case of how things are implemented.

On Amendment 62, in the name of the noble Baroness, Lady Tyler, and the noble Lord, Lord Scriven, it is important that the transition of a young person to adult services is planned and managed with the utmost care by the clinical team. This is reflected in existing care standards and guidelines, which set out what should be met, what relevant teams should meet and how to provide specific support where a young person’s care is being transferred to adult services. This should take place six months prior to the patient turning 18 years of age. On reviewing the patient’s statutory care and treatment plan when they reach adulthood, in Clause 20, subsection (5)(d) of new Section 130ZA already sets out that that plan must be reviewed following any change in circumstances or conditions. We think that turning 18 and transitioning from children and young people’s services to adult is a significant change and absolutely requires review of the plan. We will make this explicit in the code of practice.

Finally, I turn to Amendment 64. I thank my noble friend Lady Keeley for sharing the reality of how this manifests itself by sharing with us individual circumstances. I also thank the noble Lord, Lord Young, whose work on young carers is well known and respected. We support the intention to ensure that children are properly safeguarded. If a person is known to services, immediate safeguarding needs to form part of the planning by approved mental health professionals on behalf of the local authority and others involved in the Mental Health Act assessment before bringing a person into hospital. If a person is not known to known to services, the professionals should work with the relevant agencies to make sure the necessary steps are taken. The statutory guidance Working Together to Safeguard Children sets out how all practitioners working with children and families need to understand their role in this regard.

[Baroness Keeley (Lab)]

I just want to reflect that the noble Lord, Lord Young, said in his speech that young carers services almost never receive any referrals from adult mental health services, despite the provision that already exists and has done for a number of years in codes of practice. This is a difficult thing—I tried to bring in legislation for that in the other place on a number of occasions. I just thought that was worth pointing out.

[Baroness Merron (Lab)]

I thank my noble friend for pointing that out. On the points raised about protections for young carers, the code highlights that children who are caring for parents with severe mental illness are entitled to request a young carer’s needs assessment under the Children Act. It goes on to cover the information that young carers should be offered to help navigate such a challenging time.

Returning to the guidance about which I was speaking, as has been identified, it already outlines the responsibility of multiagency safeguarding partners. Protecting children at risk of abuse and stopping vulnerable children falling through the cracks is very much at the heart of the Children’s Wellbeing and Schools Bill, which was introduced to Parliament last month.

NHS: Patients with Allergies

Baroness Keeley Excerpts

Thursday 12th December 2024 Grand Committee

[Baroness Keeley (Lab)]

My Lords, it is a pleasure to speak in this short debate on this important subject. I congratulate my noble friend Lady Ramsey of Wall Heath on obtaining the debate and on her excellent opening speech, and I am very pleased to follow my noble friend Lord Mendelsohn.

It is a surprising fact that one in three people in the UK live with allergies—perhaps it will not surprise any of us in the Room now, having heard the opening speeches. I am one of those 21 million people, as I have a number of food allergies or intolerances, which have increased over the last 30 years. My allergies are not as serious as the ones that cause an anaphylactic reaction, but they do affect day-to-day living, as I have to avoid wheat gluten, rich dairy products and—at this time of year perhaps the most difficult exclusion—chocolate.

Avoiding allergens in products at home has become a little easier. Thirty years ago. it was very hard to avoid wheat, which is often in many products with ingredients labelled as starch but which is often wheat starch. I learned to cook with different flours, as I am sure every parent with a child with allergy learns to do, but they often had to be bought at health food shops. Now, large supermarkets have a section for “free from” or “made without” products and stock a range of gluten-free flours. At this point, it is worth explaining to those who are not in this world that these products are very expensive indeed. Small loaves cost more than £3, and many of the flour products are very expensive, so the point made about low-income families is very pertinent.

However, the most difficult aspect of day-to-day living with allergies is avoiding allergens in food when eating out, including at work and at school, buying food when travelling or on holiday and buying food from takeaways, because in that situation you have to rely on a shop selling food knowing which ingredients are in the products. It relies on chefs, kitchen staff, waiters and baristas playing their part in faithfully recording requests to avoid allergens and passing that information on to the staff preparing food or drinks, but that does not always happen.

An article in the Times highlighted that more than 50 young people, including a child of nine, have died in less than a decade as a result of severe allergic reactions to food or drinks bought in restaurants, cafés, shops or schools. We have heard in a number of colleagues’ speeches about Natasha Ednan-Laperouse, who died aged 15 after eating a Pret a Manger sandwich which contained sesame. As we have heard, her parents have campaigned on the issues in her case and been told of many deaths of other young people—almost all of which, it seems, were avoidable. They were shocked to hear of so many avoidable deaths. Her father Nadim said:

“When Natasha was growing up we didn’t know any other parents whose children were food-allergic and she was the only one in her primary and secondary school … Then we received thousands of letters when it became public from people who said, ‘We fear every day what happened to your child will happen to ours’”.


He also said that the common themes in the stories they were told by parents included a lack of understanding among catering staff about allergies and how serious they can be, or a human error meaning that they were given the wrong food product.

As we have heard, Natasha’s parents’ campaigns have been focused on two areas: Natasha’s law, an important measure that came into force in 2021, tightening legislation to force outlets that package their own food products on-site to provide a full list of ingredients on the labels, with any of the top 14 allergens, including milk, nuts, eggs and sesame, highlighted; and, as we have heard, the Natasha Allergy Research Foundation is funding a £2.7 million immunotherapy trial across six hospitals that aims to gradually desensitise patients to their allergens through everyday foods. On the number of cases, it is worth saying that, as an MP, I had two local cases within one year of young people who tragically died after eating food containing allergens, despite in both cases the young person or their parents describing their allergies and being assured by waiters and serving staff that the food they were eating was safe for them.

Allergy UK tells us in its excellent briefing that 62% of people with allergies say it affects all aspects of their lives, and I am sure all of us who are contributing here can appreciate that, but among adults with anaphylaxis 40% experience post-traumatic stress disorder because, as my noble friend Lady Ramsey said earlier, it strikes terror in parents’ hearts. Allergy UK also tells us that, despite hospital admissions for people with allergies being 615% up in the last 20 years and rising sharply among children, we have only 40 specialist allergists in this country. As we have heard, specialist services are not well spread across the country; the pattern is distorted. The NHS underutilises preventive strategies such as early allergen introduction; and treatments like immunotherapy have been rejected due to perceptions of the high short-term cost, despite the fact that immunotherapy drastically reduces the high cost of future emergency admissions and hospitalisations.

I join Allergy UK in hoping that the Labour Government may be more receptive to preventive strategies, and I would be grateful if the Minister could give us an update on any possible new preventive strategies for allergies. I also ask my noble friend to look at the call from Allergy UK for the Government to introduce a specialist allergy nurse and dietician at primary care level within every integrated system. With 21 million people living with allergies and so many avoidable deaths of young people and hospitalisations due to allergens, I hope the Government can agree to look at the gaps in allergy management within primary care.

Physician and Anaesthetist Associate Roles: Review

Baroness Keeley Excerpts

Thursday 5th December 2024 Lords Chamber

[Baroness Keeley (Lab)]

My Lords, I welcome the opportunity to speak in this short debate on the review of the physician associate and anaesthetist associate roles and what actions the Government plan. I congratulate the noble Baroness, Lady Bennett of Manor Castle, on the debate and her opening speech. I will start by focusing on the way in which physician associates are used in the NHS and some of the consequences this has had.

In July 2023 I led an Adjournment debate in the Commons on the use of physician associates in the NHS. I did so to raise issues in the case of Emily Chesterton, the daughter of my former constituents Marion and Brendan Chesterton. Emily tragically died of a pulmonary embolism, aged 30, after seeing the same physician associate twice at her GP practice and being misdiagnosed.

The circumstances of Emily’s death were investigated by a coroner in March 2023. Messages from Emily examined at the inquest evidence Emily’s belief that she was seeing a doctor, that the appointments with the physician associate were short and that Emily was not examined fully. The conclusion of the coroner was:

“Emily Chesterton … attended her general practitioner surgery … with calf pain and shortness of breath, and was seen by the same physician associate on both occasions. She should have been immediately referred to a hospital emergency unit. If she had been on either occasion, the likelihood is that she would have been treated for pulmonary embolism and would have survived”.


Crucially, the physician associate did not seek medical advice after seeing a patient who had presented twice in one week with significant risk factors for pulmonary embolism, and she sent Emily home without consulting a doctor about her symptoms.

I said in that Commons debate that Emily’s case raises serious questions about the wider use of physician associates in the NHS. In particular, it raises questions about allowing physician associates to carry out unsupervised one-to-one consultations with undifferentiated patients in general practice. PAs are a dependent role; they are meant to be under the supervision of a designated medical practitioner, but that does not appear to have been the case with the lack of supervision that occurred in the case of Emily Chesterton.

The GP practice later raised concerns about the physician associate’s knowledge and understanding of what investigations she should perform on a patient presenting with those symptoms, about her ability to recognise an unwell patient and escalate those concerns to a doctor, and about her overconfidence and lack of insight into the limitations of her own clinical knowledge and practice.

Since I raised Emily Chesterton’s case, my fears about these roles have increased. There have been other deaths involving PAs. Susan Pollitt died after a drain was mistakenly left in her abdomen for 21 hours by a PA. The inquest concluded that her death in Royal Oldham Hospital in July 2023 had been caused by an

“unnecessary medical procedure contributed to by neglect”.

The Northern Care Alliance NHS Foundation Trust, which runs the Royal Oldham, found that Mrs Pollitt would have survived had the drain been removed earlier.

As we have heard, there are also examples of PAs taking on roles that are far too complex for their experience and knowledge. Alder Hey Children’s Hospital has now admitted that, from 2019 to 2023, a PA worked in a role that involved child sexual abuse medicals. Alder Hey had originally denied that PAs were being used in its paediatric sexual referral centre, which is for children under 16 who have experienced sexual abuse.

Dr Matt Kneale, former chair of the Doctors’ Association, said

“This is flagrantly unsafe. I have no confidence that those cases have been assessed to the same competence of a senior paediatric doctor. Children deserve better”.


Alder Hey later admitted that it stopped deploying a PA within its safeguarding team after concerns were raised by the Crown Prosecution Service and the police about relying on the evidence of a PA in court cases.

The Royal College of Paediatrics and Child Health has just published a survey of the experience of paediatricians working with PAs, with 2,200 responses. The survey reported the following safety issues in the work of PAs: misdiagnosis, 63%; miscommunication, 58%; failure to escalate deterioration, 48%; undetected deterioration, 23%; and ordering ionising radiation—which PAs are not allowed to do—9%. The RCPCH survey also reported that 72% of paediatricians with experience of working with a PA believe that their recruitment should be halted.

There are many more examples where patient safety is seen to be endangered by the way in which PAs and AAs are being used in the NHS. This is not helped by seeing a number of posts on social media with PAs videoing themselves, their patients and their clinical settings just to make posts on TikTok or other social media. Concerned consultants who highlighted these inappropriate videos to the press have said that PAs are coming very close to the line of professional misconduct by making these videos.

The new Government have inherited what is effectively a Wild West in medical care, because a new medical role was brought in without regulation, with only voluntary registration and no national scope of practice for PAs and AAs. GP members of the BMA have voted in favour of stopping hiring PAs in general practice and phasing out the PA role. They also stated that the role of PA is inadequately trained to manage undifferentiated patients and that there should be an immediate moratorium on such consultations. The medical royal colleges, as we have heard in this debate, are making their strength of feeling heard on these safety issues. This was recently summarised by Professor Martin McKee in an article in the BMJ.

As I mentioned, the Royal College of Paediatrics and Child Health found substantial safety concerns with PAs working in paediatric settings. The Royal College of GPs has agreed to oppose the role of PAs working in general practice, following a consultation of its members.

The Royal College of Physicians of London is now advocating for a limit to the rollout of the PA role, following a survey of its members. Its sister royal college in Edinburgh has called for a delay in implementation

“until clear nationally agreed scope and ceiling of practice protocols are in place and clear plans regarding post-registration training and assessment of PAs are defined”.

The Royal College of Surgeons has also expressed concerns, including the risk that the expansion of these roles could undermine the roles of surgical care practitioners, surgical first assistants and advanced nurse practitioners. As we have heard, the Royal College of Anaesthetists, after noting concerns about the current use of AAs, has called for a pause in their recruitment.

The Royal College of Radiologists says it has

“no plans to bring PAs into the College and we do not anticipate a significant expansion of the role within our specialties”.

The Royal College of Emergency Medicine also

“does not currently support the expansion of the Physician Associate workforce in Emergency Medicine”,

again supported by a member survey expressing widespread concern. Now, as we have heard, the Universities of Chester and Portsmouth have halted recruitment to their PA courses for 2025, and the University of Leeds no longer lists the course on its website.

On announcing the Leng review, Secretary of State Wes Streeting said that

“there are legitimate concerns over transparency for patients, scope of practice and the substituting of doctors”.

I agree.

I believe the issues that need to be tackled are these. We need to focus on the unsafe substitution of physician associates in what should be doctor-only roles and rotas, and we should put a stop to that substitution while the Leng review is in progress. We need to accept that it is time to pause the recruitment of PA and AA roles and to halt the expansion of their numbers, particularly until after the Leng review reports, and we should take action, as we have heard, so that PAs and AAs in existing roles are now given the opportunity to retrain into other roles.

In the interim, I hope we can accept that there must be proper regulation of PAs and AAs. They must work within a national scope of practice agreed with the royal colleges. As a first step, as we have heard, the BMA’s safe scope of practice could be adopted.

After the tragic deaths, such as those of Emily Chesterton and Susan Pollitt, we must also hear the voices of patients and the public. Do people want these roles, or would they rather see a doctor?

I end with a quote that Emily’s mother, Marion Chesterton, sent to me. She said:

“We hope that, for all our sakes, precise, thorough and true regulation of PAs will end the chaos, confusion, vagueness and potential danger to patients. We pray for clarity, honesty and co-operation. If our daughter’s life means anything, please, sort out this sorry mess. No more Emilys”.

Mental Health Bill [HL]

Baroness Keeley Excerpts

2nd reading
Monday 25th November 2024 Lords Chamber

[Baroness Keeley (Lab)]

My Lords, I am glad to take part in this debate in your Lordships’ House, after four years as a shadow Minister for Mental Health and six years on the Health Select Committee in the Commons.

In welcoming this Second Reading, I will speak about dealing with the inappropriate detention of autistic people and people with learning disabilities in mental health hospitals. Noble Lords, including those who served on the Joint Committee on the draft Mental Health Bill, understand that too many autistic people and people with learning disabilities have been detained in inappropriate facilities and for far too long. But we, as politicians and legislators, have not made the changes needed to stop this.

The Winterbourne View scandal and a series of other scandals since 2010 have shown abusive treatment meted out to autistic people and people with learning disabilities detained in inappropriate units. In 2011, following the shocking revelations made by journalists of the abuse to residents detained in Winterbourne View, which was rightly described as “torture”, the then Prime Minister pledged to close all inappropriate in-patient units by 2014. That did not happen. Since then, successive Governments have also committed to targets to reduce the number of autistic people and people with learning disabilities in in-patient settings and to prioritise housing and support in the community for those individuals. These targets have all been missed.

In 2021, the Commons Health and Social Care Select Committee, of which I was a member, completed an inquiry into this treatment. Commenting on the missed and delayed policy targets, the inquiry report suggested that “a more radical approach” was needed to unlock community provision for this group of people. Now there is a chance for reform but there are widespread concerns to raise with my noble friend the Minister that the measures in the Mental Health Bill will not be enough in themselves. While it is welcome that the Bill makes it harder to detain a person under the Mental Health Act on the grounds of autism or learning disability, there are widespread concerns, as we heard in this debate, that this could lead to people being held under alternative routes, including the Mental Capacity Act 2005 deprivation of liberty safeguards. We must guard against that happening.

In many cases, autistic people and people with learning disabilities are not being detained just because of the legal framework they are under. They get stuck for years in mental health hospitals because of the lack of support for them in the community. In too many cases, discharge planning is repeatedly delayed because those responsible see the needs involved as too complex or feel that there are no suitable care providers. I will mention two cases to illustrate this: a young autistic woman called Bethany, and Tony Hickmott.

When I first raised Bethany’s case in the Commons, she was a 17 year-old autistic woman with extreme anxiety, kept in seclusion in St Andrew’s hospital, Northamptonshire. In a cell-like room, she was fed through a hatch in a metal door. When her father Jeremy visited, he had to kneel at the hatch in the door to speak to her. Bethany was detained and held in seclusion despite an assessment that the hospital setting that she was in could not meet her needs and a recommendation that she should be moved to a community residential setting with high support.

The lack of funding for support in the community was clearly a factor. The Walsall Council officer responsible for her placement told Bethany’s father that her care had already cost the council £1.2 million. “To be frank,” the officer said to him, “Walsall could do with a breather”. Moving Bethany to a community setting would involve her local council paying £100,000 to £200,000 a year from the adult social care budget, instead of leaving the NHS to pay the much higher bill, which was £676,000 a year. It seems that Bethany was being held in isolation so that the local council responsible did not have to pay her costs, but the very high costs of her detention were then borne by NHS England.

I raised Bethany’s case numerous times in the Commons and she was at last discharged to live in the community. Fast forward seven years and her father talks about what a happy life his daughter now has, in her own property, with good support from a wonderful care team.

The outcome has not been as positive for Tony Hickmott, an autistic man with learning disabilities. In 2022, Tony had spent 21 years in a secure assessment and treatment unit and it looked as if he could finally move back to his hometown of Brighton, close to his parents Pam and Roy.

Tony had stopped meeting the criteria for being detained in a psychiatric hospital in 2013, but it was ruled that he could not be discharged from there because a suitable community placement could not be found for him. His parents applied to the Court of Protection in 2019 and, after a number of hearings, the judge ruled that Tony should be discharged from hospital to live in a specially renovated house with care from a brought-in provider.

This should have been a happy ending too, but it was not. Reports describe that Tony is now effectively barricaded into the bedroom, with the care staff in his home operating the house like a seclusion room. Tony’s parents, now in their 80s, are prohibited from taking him out into the community. He is held under the deprivation of liberty safeguards. I hope that Tony Hickmott’s care provision can be improved.

Much could have been done by Governments over the last 12 years to tackle this issue of inappropriate detention. The new Government now have the chance to change this. First, we must act to prevent new inappropriate admissions of autistic people and people with learning disabilities. Secondly, we must act to enable the discharge of the 2,000 autistic people and people with learning disabilities detained inappropriately in mental health units.

As we have heard in this debate, the average length of detention for this group is 5.4 years, with 355 people detained for more than 10 years. Mencap has estimated the cost of this care in inappropriate units for this group as £534 million a year. Detentions are often, as we have heard, far away from family and friends, with alarming reports of people from this group being overmedicalised, subject to physical restraint and shut away in isolation. All this is as traumatic for those detained as it is devastating for their families. As Mencap has said, its findings on the staggering cost of institutional care show that this is

“an appalling waste of public money on the wrong type of care”.

I hope that there is now a will to change this.

As I mentioned, there is first the issue of ensuring no new placements of autistic people and people with learning disabilities in those inappropriate mental health units. The Commons Select Committee inquiry report made recommendations on how this could be achieved.

Secondly, the issue of who is paying for care and community support must be tackled. I support the plea made by the noble Baroness, Lady Hollins, for an action plan to succeed the Building the Right Support Action Plan. The Commons Select Committee inquiry recommended that the Department of Health and Social Care should

“redesign the financial incentives … so that local authorities”

and local NHS bodies

“do not seek to ‘offload’”

the care of

“autistic people and people with learning disabilities onto the NHS or place these individuals in inpatient facilities”.

Tackling these issues of funding flows now needs strong cross-governmental action.

There are some further actions that could be taken to improve the mechanisms around this area of work. I thank the human rights lawyer Dr Oliver Lewis for his input. Currently, mental health tribunals are not considered useful in dealing with people stuck in hospital in-patient units. Tribunals dealing with cases for this group should be required to have a medical member with expertise in autism and learning disabilities. Working through the practical issues of achieving a discharge destination for people currently detained could be improved if mental health tribunals are given the power to compel a local authority or NHS body to find a discharge destination in the community or if the Court of Protection was used more to rule on discharge arrangements.

The Bill presents an opportunity to correct an oversight under Section 73 of the Care Act 2014 affecting human rights, which the noble Baroness, Lady Barker, raised earlier. I too thank Dr Lucy Series and Professor Luke Clements for information about the issues raised in the Sammut judgment. As we have heard, that is a ruling that means the Human Rights Act does not apply where mental health patients get Section 117 aftercare in private settings. There is a real concern about the broader implications of this for patients receiving continuing healthcare through private services, children in private social care, and even patients detained in private hospitals under the deprivation of liberty safeguards. This latter group could expand to include the numbers of learning disabled and autistic people who are detained in hospital under the deprivation of liberty safeguards because they are no longer eligible for detention under Section 3 of the Mental Health Act. I am sure it was Parliament’s intention to protect the human rights of vulnerable adults and children for whom the state arranges health and care services. I hope that my noble friend the Minister will agree to the suggested meeting with Lucy Series and Luke Clements to discuss that.

I hope that we can bring forward amendments as necessary to correct this oversight as well as to address the other issues I have raised.

Carers and Poverty: Carers UK Report

Baroness Keeley Excerpts

Thursday 21st November 2024 Lords Chamber

[Baroness Merron (Lab)]

One of the key things in all this is the identification of carers. As has been discussed in your Lordships’ House on a number of occasions, a lot of people do not identify as carers. Therefore, we are encouraging GPs and, in the case of young carers, schools, to identify carers, so that they can get the support they deserve. The noble Lord, Lord Darzi, identified that making sure that unpaid carers receive recognition and support is key, and it will be in the 10-year plan as we go forward.

[Baroness Keeley (Lab)]

My Lords, I want to raise the issue of the 21-hour study rule whereby an unpaid carer is not allowed to claim carer’s allowance and be in full-time education of more than 21 hours a week. I cannot see a good reason for that rule. It would be very welcome if the Labour Government changed the rule to allow unpaid carers to study without losing their carer’s allowance.

[Baroness Merron (Lab)]

I thank my noble friend for that and can assure her that I will be discussing that very point with ministerial colleagues and am happy to return to her on it.

National Carers Strategy

Baroness Keeley Excerpts

Tuesday 19th November 2024 Lords Chamber

Asked by

[Baroness Keeley]

To ask His Majesty’s Government what plans they have to develop a National Carers Strategy.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)]

My Lords, we are committed to supporting unpaid carers through our renewed vision for adult social care and the 10-year plan for the National Health Service. We have already taken action to increase the carer’s allowance earning limit, meaning that carers can earn around £2,000 a year more without affecting their entitlement. We have heard the calls for a national carers strategy and will continue to work collaboratively across government to ensure that unpaid carers are visible, valued and supported.

[Baroness Keeley (Lab)]

I thank my noble friend the Minister for that reply, particularly on cross-governmental working, because I think that is one of the most important aspects. The Labour Government’s first national carers strategy was launched in 1999 by the Prime Minister, Tony Blair. The second strategy in 2008 had the support of Gordon Brown and seven Secretaries of State, because evidence from unpaid carers had shown that support for carers could not be solved by one government department but needed work across several. Sadly, Conservative Governments after 2015 did not continue with the national strategy, preferring a much less effective carers action plan. Carers are partners in care, so will my noble friend the Minister consider the strength of feeling among carers and their support organisations that they need and deserve a high-level strategy across government departments to support them?

[Baroness Merron (Lab)]

I certainly agree with the emphasis that my noble friend is putting on the need for cross-government working. I know she has been a champion of that for many years in the other place and that she will continue in your Lordships’ House to ensure that unpaid carers are properly supported and recognised. I can tell my noble friend that Minister Kinnock, as the lead Minister for unpaid carers, regularly engages with those with lived experience, the organisations that represent them and—importantly to the point my noble friend is making—with Ministers from other government departments, most recently the Department for Work and Pensions. We will be formalising our cross-government working with relevant departments and NHS England.