Mental Health Bill [HL]

Baroness Ramsey of Wall Heath Excerpts

Committee stage
Monday 24th February 2025 Lords Chamber

[Lord Davies of Brixton (Lab)]

Amendment 157 in my name seeks to clarify the responsibilities of integrated care boards and local health boards to find beds in a timely manner for patients admitted under Section 140 of the Mental Health Act.

This amendment goes to the heart of why we have the Bill in the first place. In large part, the practical problems experienced in obtaining proper care for people led to the introduction of the Bill, Sir Simon Wessely’s review and the work of the Committee. It reflects an important aspect of the transformation that has taken place in the understanding and treatment of mental illness. It reflects the importance of timely and effective care for people experiencing a crisis in their mental health. The Bill seeks to fill in gaps in mental health care, which can mean the difference between rapid intervention and needless delay.

My amendment to Section 140 is both necessary and overdue. It would place a clear responsibility on every integrated care board and local health board to ensure that patients who are assessed as requiring hospital admission under the Act receive it in a timely and appropriate manner. To that end, it mandates a clear line of responsibility by requiring the appointment of a designated officer charged with overseeing that these admission arrangements, as outlined in the Act, are not only established but function effectively on a day-to-day basis. This is not a mere administrative adjustment; it is an important change, aimed at addressing real world issues that affect the lives of countless individuals. Mental health crises occur without warning and do not adhere to schedules or bureaucratic timelines.

The local health boards and integrated care boards are the crucial link between community services and hospital care. Placing a clear statutory duty on these organisations will create a clear line of responsibility to ensure that no patient is left waiting whenever immediate care is needed. The appointment of a designated officer will further enhance accountability and operational efficiency. To emphasise the point, an individual with the specific responsibility of overseeing these arrangements will provide a robust mechanism to promptly address any issues that arise and to ensure that every patient’s admission is swift and appropriate.

It is important to understand the broader implications of this amendment. Timely admission to hospital is not merely a procedural matter; it is a critical component of effective mental health care. Early intervention can mean the difference between a manageable crisis and a catastrophic decline in a patient’s condition. By ensuring that patients are admitted promptly, we will invest in early treatment, reduce the likelihood of complications and, ultimately, alleviate the burden on our healthcare system. This proactive approach will lead to improved outcomes for patients, greater satisfaction among healthcare professionals and a more sustainable model for mental health service delivery.

To conclude, my amendment is a necessary step forward. It would provide clarity, reinforce accountability and ensure that our mental health system remains responsive and effective. I urge my noble friend the Minister to respond positively to my amendment, not merely as a change in policy but as a commitment to the well-being and dignity of every individual who depends on our mental health services.

[Baroness Ramsey of Wall Heath (Lab)]

My Lords, I rise to support Amendment 134. I hope I get the etiquette right, as this is my first contribution in Committee. I know noble Lords will put me right if I get it wrong.

People with learning disabilities and autism are generally detained because insufficient community support is available to keep them and others safe. Amending the Mental Health Act to prevent them being detained under its provisions will therefore be ineffective unless it is accompanied by serious investment in such support. In fact, without such investment it could actually be worse for people with learning disabilities and autism: if the community support is not available, doctors and social workers will inevitably look for other ways to keep them safe. They might be tempted to use the Mental Capacity Act in some cases, thereby taking away almost all agency and rights, not just those in respect of treatment, or to get the police and prosecutors involved in response to challenging behaviours, simply because the involvement of the criminal justice system means they can still use detention under the amended MHA. What an irony it would be if amendments to the Mental Health Act designed explicitly to reduce detention actually led to worse forms of detention.

Amendment 134, which would require integrated care boards to ensure that resources are made available to secure the necessary community support, is absolutely vital for the Bill to be effective. I mention here, as it is relevant, that I support the spirit of Amendments 163 and 164 in the names of the noble Lord, Lord Stevens of Birmingham, and others. If the necessary investment is made by integrated care boards, the future for people with learning disabilities and autism could be so much brighter.

I have seen what a wonderful difference this approach can make. I will never forget my work visit, in relation to children and young people with learning disabilities and autism, to a state special school in the London Borough of Islington—part of the Bridge Trust for youngsters with severe learning disabilities and autism, among other special needs—and seeing how well supported they were by integrated teams of social workers and health and education professionals. I asked the chief executive officer, Dr Penny Barratt, who had set the school up, how it started. She told me that she had been listening to the news one day and heard a report about a boy with autism whose behaviour was so challenging that he was being held down by seven people in A&E. Her background as a special needs teacher meant she knew that the next step for him was bound to be long-term, segregated detention. She was inspired in that moment to do something about it. The special school was born and, wonderfully, that young man became one of its pupils. His needs were as great as ever, with no language, but expert care and support from loving professionals meant that he was having a fulfilling life in a room with other pupils—with no detention and no segregation. Let us legislate to make it clear that this is the sort of future that we want to see for all such young people.

--- Later in debate ---

[Baroness Hollins (CB)]

My Lords, I declare my interest and my experience as a retired psychiatrist, working for the majority of my career with people with learning disabilities and autistic people.

In 2019, the then Secretary of State for Health asked me to oversee an important review of the use of another restrictive intervention, long-term segregation, known as LTS, for people with learning disabilities and autistic people. The Government published the oversight panel’s report of that review simultaneously with their quite positive response to its recommendations in November 2023.

Amendments 155 and 156 in this group address critical issues highlighted in the report about the use of LTS and the measures needed to eliminate its use for people detained under mental health legislation. The amendments aim to improve oversight and accountability in its use, while pointing to the urgent need for appropriate community services to prevent delayed discharges. The proposed changes are not merely administrative; they are a necessary response to urgent human rights questions raised by the use of LTS, and indeed these other restrictive interventions covered by the noble Earl, Lord Howe, whose amendment I support.

The report, aptly titled My Heart Breaks, found that the mental and physical health of children and young people and adults detained in long-term segregation deteriorates as a direct consequence of enforced isolation. In medicine, we call this iatrogenic harm, and it is unacceptable. LTS is often used in association with other restrictive practices. There is substantial research evidence pointing to the harms of such enforced social isolation, including in conditions of solitary confinement. Nor does it have therapeutic benefit. Oversight panel members considered that LTS should actually be renamed “solitary confinement” to avoid the normalisation of the practice in healthcare settings. Currently, rather less clear terminology is used, perhaps to disguise what is really happening in practice.

It is interesting to note that not all psychiatric hospitals have rooms in which to detain people. The type of accommodation used is sometimes totally unacceptable, with people being detained in rooms with no natural light, with a mattress on the floor and no toilet facilities.

Amendment 155 would require notification of LTS to the CQC within 72 hours of its commencement. It would require that the CQC must initiate an investigation if LTS was used for more than 15 days within any 30-day period, and if it were used for a person under the age of 18, or for a disabled person whose condition would be exacerbated by its use—for example, an already psychologically traumatised person who would be further traumatised by the sensory and social deprivation caused by its use, which is probably most people.

The amendment would require that the code of practice introduced minimum standards for LTS, including access to natural light, outdoor space and meaningful human contact. As I am sure most noble Lords would agree, these are basic necessities for dignity and well-being. Psychiatric hospitals still using LTS would be required to appoint a responsible officer to review and report on its use to the CQC. They would also be required to comply with recommendations from independent care (education) and treatment reviews, known as ICETRs, as they relate to LTS.

Amendment 156 seeks to ensure that therapeutic alternatives to LTS have been properly considered by requiring independently chaired reviews for any person detained in LTS. Since the end of the Department of Health’s programme of ICETRs in 2023, which reviewed 191 cases between 2020 and 2023, the CQC was commissioned to restart the programme. The new programme includes that the independent chairs must follow up to see whether the recommendations have been implemented, but funding has been committed only to the end of this current year, while LTS continues. These reviews must be kept in place until the use of LTS comes to an end, or for as long as it is in existence, so the amendment would require ICETRs to be continued, and it outlines the role, responsibilities and authority of the independent reviewer. I hope the Minister will be able to assure the Committee that the continuation of these independent reviews will be funded.

By limiting the duration of LTS, mandating independent oversight and requiring therapeutic alternatives, we could protect people’s rights and lay the groundwork for effective rehabilitation and reintegration back into their communities. Meeting minimum standards and reclassifying such segregation as “solitary confinement” would rightly underscore its appalling and often inhumane nature. I know many clinicians dislike that term because it is equated with punishment, but it describes the conditions that we sometimes saw.

The excuse is often given that LTS is the last resort for a person, but in fact it is usually the first resort and the first response, because no appropriate care and support have been provided. I have seen systemic failures that are leaving individuals in restrictive settings due to insufficient community-based support. While commissioners and clinicians often act with good intentions, they lack the co-ordination, resources and expertise needed to deliver the care that is needed to keep people safe.

The amendments simply aim to ensure therapeutic care close to home. They require that, by monitoring the continuing use of LTS and understanding the barriers to eliminating its use, the CQC would be able to identify the themes, trends and changes that are taking place over time in the use of this restrictive intervention. I urge the Minister to support the amendments.

[Baroness Ramsey of Wall Heath (Lab)]

My Lords, I support Amendments 155 and 156, to which I have added my name. If they were approved, the Care Quality Commission would be required to ensure independent reviews of the suitability of continued segregation, with a particular focus on the potential for community support to be preferable. The amendments would also increase transparency and set minimum standards, both of which I am sure noble Lords will wish to support.

When I chaired, from 2017 to 2020, NHS England’s transforming care steering group for children and young people with learning disabilities, autism or mental health problems and challenging behaviour, I heard heartbreaking testimony from parents whose teenage and young adult children were segregated for weeks and months on end, as referred to by the noble Baroness, Lady Hollins. For example, I visited a non-NHS provider outside London that had kept one young adult woman—whose story appeared in social media at the time, noble Lords may remember—in segregation, in a room with no window and no natural light, and passed food to her through a hatch. She was completely alone.

As I and other noble Lords have already argued, investment in the right type of community support is the only humane way forward. To ensure that proper use is made of this investment, we should send out a clear message that we expect community services to be used wherever possible, rather than segregation. The way to do this is for the Care Quality Commission to oversee a process of independent review in any case of segregation of a young person under 18, anyone with learning disabilities or autism, or anyone whose segregation exceeds 15 days.

NHS: Patients with Allergies

Baroness Ramsey of Wall Heath Excerpts

Thursday 12th December 2024 Grand Committee

Asked by

[Baroness Ramsey of Wall Heath]

To ask His Majesty’s Government what steps they will take to ensure that patients with allergies receive timely and comprehensive care from the NHS.

[Baroness Ramsey of Wall Heath (Lab)]

My Lords, I am pleased to have the opportunity to consider this challenging issue with noble Lords who have kindly put their name down for this debate. I am grateful to the staff of the House of Lords Library for their helpful briefing as well to those charitable organisations that have contacted me with a wealth of useful background information.

At the start, I want to explain where my close interest in this issue arises. My 16 year-old daughter was diagnosed with multiple allergies as a baby. Thankfully, she has grown out of most of them, and I will never forget the astonished smile on her face when, having grown out of her egg allergy, she had her first bite of chocolate cake. Unfortunately, her severe allergy to peanuts has continued, and her father and I have twice seen for ourselves the reality of anaphylaxis, watching helplessly as our daughter suffered. We are fortunate that in all other ways she is a fit and healthy teenager, but every time I read, as we all will have, about the death of a child or a young person from an allergic reaction, I weep for the parents.

We will all have been moved by the tragic story of Natasha Ednan-Laperouse, who died at 15 after an allergic reaction to the sesame seeds hidden inside a baguette. It has been inspiring to see how Natasha’s parents set up a charity to improve the outlook for allergy sufferers in future. In fact, the findings of a pioneering Natasha clinic trial led by researchers at the University of Southampton, University Hospital Southampton and Imperial College London are already transforming the lives of some children with severe milk and peanut allergies.

Allergy UK kindly briefed me about the scale of the problem across the country. More than 100,000 people were admitted to hospital for anaphylaxis over the 20 years to 2018, which tells us that an otherwise completely healthy person is more likely than not to be admitted to hospital following an extremely frightening allergic reaction during the course of today’s short debate, and, most distressingly of all, the data shows that the next death from anaphylaxis is likely to happen in less than seven weeks from now. As noble Lords will understand, every such death strikes what I can only describe as terror in a parent’s heart. Noble Lords can imagine what I am feeling when I ask, “Have you got your EpiPens?” every single time my daughter leaves the house.

When my daughter was only a baby, her GP, who was concerned about her eczema, referred her to an allergy research study at Evelina London Children’s Hospital just across the river from here, part of the wonderful Guy’s and St Thomas’ NHS Foundation Trust. Both there, and at the trust’s paediatric allergy clinic, she received wonderful care over the next 15 years. I subsequently learned that the trust is a World Allergy Organization centre of excellence, as is Southampton, which demonstrates that England has some of the world’s pre-eminent specialist clinical and research allergy centres.

These specialist centres are few in number and are clustered in the south-east. A child like my daughter, living near to a renowned specialist centre, will have access to cutting-edge research, along with the clinical benefit, while others elsewhere will not have access to even basic specialist services. Even where, as at Guy’s and St Thomas’, children and young people have the chance to get the services that should be available to all, once they start to transition to adulthood, support largely disappears.

Services for adults are very limited indeed. I was amazed to learn that medical training includes only four hours on allergies—contrast that with 46 weeks on gynaecology for all doctors. I certainly do not want that reduced, of course, but I do want allergy training to match it. The amount of research into allergies is pitiful when compared to other health conditions. Wonderful though the work of the Natasha Allergy Research Foundation is, does it not rather shame us that Natasha’s parents had to persuade food retailers to pay for life-changing research?

I am delighted to learn that the new Government are working on a 10-year national allergy strategy, and I ask my noble friend the Minister to make sure that this is used to increase training and research significantly in future. However, my experience, both as a mother and as a non-executive director in the NHS for 20 years, has brought me to the realisation that there is a yawning gap in the way in which the NHS responds to the needs of those patients who are no longer children but not yet fully adults. The transition from one to the other is challenging in many ways. Teenagers develop independence by taking risks and learning to deal with the consequences. It is important for them to do so; indeed, their brains continue to mature until they are 25.

What does that mean for teenagers with severe allergies? In the absence of effective treatments—I go back to the shortage in both capacity and research—the only way to avoid anaphylactic shock is to minimise the risk: never leaving home without two EpiPens; never eating food that might, for example, have been cooked in peanut oil; and always checking the ingredients of everything that you eat, even—perhaps especially—at a party in someone’s house, where the alcohol may be flowing freely and the lights may be down low.

When my daughter was a young child, she had an anaphylactic shock in hospital as a result of the testing of her condition by the allergy specialist medical team. As her father and I watched on in horror, the consultant who led the team treating her with adrenaline and steroids asked, after she was over the emergency, whether he could borrow my phone for a moment. He calmly took photos of her, pale and silent and not moving on the hospital bed. When we later asked him what on earth he had been doing, he invited us to look ahead to her later, teenage years. When you transition from childhood to adulthood, you do take risks, but having a constant reminder on your phone of the reality of anaphylaxis might just save your life.

In preparing for today’s debate, I have been able to explore this issue with the Natasha Allergy Research Foundation and, through it, with Dr Claudia Gore at Imperial College Healthcare. As a tertiary allergy service, Imperial continues to treat many young people until they turn 18, but, elsewhere, young people are discharged or referred on to adult services at 16. In the words of the foundation, the result after that is a real “postcode lottery”. Many of the young people with whom Dr Gore works have other comorbidities, including, in many cases, mental health issues such as depression and anxiety and, in some cases, special educational needs and disabilities. These can make it much harder for them to navigate the world safely and manage their allergies appropriately.

This is on top of the fact that adolescence brings all manner of challenges, even without additional medical concerns. Having transition services that understand young people and the changes they are going through in that phase of their life, as well as the move towards independence, would be hugely beneficial in helping them navigate the world as someone with severe allergies. Dr Gore is clear: there is a real lack of age-specific life or support resources for adolescents. So, we need more people with expertise in allergy, but we also need more people experienced in transition as a specialism in and of itself, because helping young people navigate adulthood with a medical condition can play a big role in improving their outcomes.

The phrase that Dr Gore used, which stuck with me, was: “Transfer is an action; transition is a process”. In other words, young people need support to begin preparing for that transition in advance of the move up to adult services, and they continue to need to be supported. She made three other key points. First, there is a real pressure point here for the NHS because lots of young people are approaching the cut-off point at which they will transition into adult services, where specialist allergy care is sorely lacking. Where there is no specialist adult allergy service to discharge to, it typically ends up with GPs, many of whom lack training in allergies. Secondly, there is not enough expertise on healthcare transition and there is a lack of resource on helping young people with allergies with the key life skills that they will need. Thirdly, in view of how common allergy conditions are in the UK, integrated care boards need to have more allergy care in place, possibly operating in a similar way to how asthma care works currently.

So, just as important as more training and research for the new national allergy strategy is the development of an NHS service for patients transitioning from childhood to adulthood. The benefits of specialist health services for those between the ages of 16 and 24, say, could go well beyond sufferers of severe allergies, but where better to start than a condition whose treatment relies completely on persuading those afflicted by it to manage their healthcare and personal risks? I hope that my noble friend the Minister will commit to meeting me, along with the Natasha Allergy Research Foundation and expert medical advisers, to discuss the way forward.

Mental Health Bill [HL]

Baroness Ramsey of Wall Heath Excerpts

2nd reading
Monday 25th November 2024 Lords Chamber

[Baroness Ramsey of Wall Heath (Lab)]

My Lords, today I will focus on those aspects of the Bill that concern children and young people with learning disabilities, autism or both. I also want to note that I found listening to the lived experience of the noble Baroness, Lady Parminter, very moving indeed.

My formal interest in this issue dates from my being the independent chair of NHS England’s children and young people transforming care steering group—for children and young people with autism and learning disabilities—from 2017-20, and before that as chair and non-executive board member of various NHS organisations. My close personal interest, however, is lifelong, as the younger sister of Patricia, who I mentioned in my maiden speech.

Patricia was born in a much less enlightened time than we enjoy now, with a learning disability that denied her expressive language and deemed her at the time of her early childhood in the 1950s as a mental defective under the then mental deficiency legislation. My brother Jim followed soon after. My younger sister and I came some years later, to our loving parents’ great joy, but neither she nor I ever lived with my sister Patricia, as she was taken away from our parents when she was seven—before we were born—to a huge and forbidding mental hospital near Birmingham, three long bus rides away from where our parents lived. They had to write each month to the hospital authorities for permission to visit, a maximum of once a month.

When our father died in 1990, my mother asked me to become Patricia’s co-guardian with her and gave me a box that he had kept containing all the paperwork concerning Patricia. The letters from my father asking for permission for Jim, my brother, to visit his sister once she was removed from the family home are heartbreaking to read, as he was always refused, even at Christmas time, because Jim was under 12. So Jim did not see his sister for years.

By the 1960s, these rules had relaxed, and my other sister and I were taken to visit one Sunday a month. I am ashamed to say that I dreaded those visits as a little girl—not because of Patricia, who I liked to see and spend time with, but because the heart of the hospital was a forbidding Victorian building where patients with mental health issues were kept. Sometimes I would hear screams and see figures trying to put their arms out of the tops of windows. At the side of the hospital for the learning disabled—by then called mentally handicapped—which was physically a much pleasanter part of the site, we would sit and eat with and cuddle our sister, who was always delighted to see us, especially our mother.

In time, my parents got a car, and my father would drive us to a café with Patricia. Sometimes we were made welcome, and sometimes not so much. My sister never went to school as she was 18 by the time the duty to educate children with learning disabilities came in following the 1970 Act. My mother found that heartbreaking.

As a child, I did not know that my parents were campaigning to get Patricia moved nearer home, hoping to take advantage of a more benign regime that was developing in the 1970s of long-stay campus-style hospitals where young adults with learning difficulties could live, still under NHS care but with fewer restrictions on the number of visits and more activities for patients—later residents. Eventually, my parents were successful, and those were happier years, with much more contact and my sister being able to visit the home that she had not grown up in.

After my father’s death I took up the campaigning mantle from him to make sure that Patricia genuinely benefited from the latest initiative: care in the community. My sister lived her last years, until she died in 2018, in a real house near our family home with three ladies she had been with previously, and we could visit whenever we wanted. My brother died 30 years ago, so he did not live to see this. My other sister and I had moved to London, but my mother was delighted, as were we, that Patricia lived in a proper house with its own kitchen with home-cooked meals and we could visit whenever we liked.

When the noble Lord, Lord Stevens of Birmingham, in his previous role as chief executive of NHS England, asked me to establish and chair the steering group in support of transforming the care of children and young people with autism and learning disabilities, your Lordships can see why I jumped at the opportunity. As the chair of the steering group, my task was to help bring together all those organisations which had important roles in reducing the number of children and young people with autism, learning disabilities, mental health conditions and behaviours that challenged, but with no criminal backgrounds, being detained.

The steering group included representatives from the Department of Health and Social Care, the Department for Education and local government, as well as charities advocating for these children and young people. What became crystal clear was that detention happens when local education, health and children’s social care services either do not or cannot meet their complex needs appropriately. Although the world has clearly moved on a long way from the days of my sister’s incarceration, I am afraid that I heard some very distressing accounts from families and hospital staff about the reality of detention, as eloquently described by my noble friend Lady Keeley, and not so short of enforced solitary confinement, as described so eloquently in the important work of the noble Baroness, Lady Hollins.

At the same time, I saw inspiring examples of what is possible when local community services come together around the needs of children and young people, including on a visit to a special school in north London where I saw pupils who in other circumstances would have been locked away in secure hospitals. The head teacher worked with a multidisciplinary team, including social workers, speech and language therapists, psychologists and others, who liaised closely with the pupils’ families.

One key issue was raised repeatedly by families and those youngsters who could speak for themselves in the stakeholder engagement meetings we held. Although NHS guidance states that each child or young person in such a situation should receive a care (education) and treatment review—CETR—and DfE guidance requires that they should also receive an education, health and care plan, or EHCP, this was all too often either not happening in a timely manner, or it was happening but not being acted upon. This was partly a matter of resources, partly a matter of priorities, and partly a lack of joined-up work between health, education and local government.

This important Bill includes proposals to strengthen current arrangements, and this is to be greatly welcomed. In particular, the assumption that children and young people with autism and learning disabilities should not be detained if at all possible—and, if this is not possible, for only the minimum of time and with a proper review and plan for treatment in place—is a huge step forward. I am delighted that it has received wide support across the political parties, beginning with the noble Baroness, Lady May, when she was Prime Minister and subsequently under more recent Governments. It shows families such as mine that society is beginning to make real progress towards greater understanding and humanity in its attitude towards people with learning disabilities and autism—albeit sometimes more slowly than we would wish for.

However, legislation on its own can take us only so far. Genuinely sustained improvement will require multiagency work—including at government level, as my noble friend Lady Keeley said—with high levels of co-operation in the community to provide effective support for children and young people at risk of being detained. Stronger multiagency community services, combined with the Bill’s provisions, would ensure a very different life for those children and young people and their families from the one my sister had.