Mental Health Bill [HL]

Baroness Browning Excerpts

Committee stage
Wednesday 22nd January 2025 Lords Chamber

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

My Lords, I thank noble Lords for the pertinent points that they have made.

I will start with Amendments 57 and 58. There is no doubt that all patients who are in a mental health hospital for care and treatment should have a care plan, whether or not they have been detained under the Act. This is already set out in guidance for commissioners and in the NHS England service specification and care standards for children’s and young people’s services. In line with the independent review’s findings and recommendations, care and treatment plans for involuntary or detained patients are statutory. This is because such patients are subject to restrictions and compulsory orders, including compulsory treatment, which places them in a uniquely vulnerable position.

Rather than bringing voluntary patients into the scope of this clause, we feel it is more appropriate to use the Mental Health Act’s code of practice to embed high standards of care planning for all patients—voluntary and involuntary. Specifically with regard to children and young people, any provisions that are relevant to voluntary patients are already met by existing specialist care planning standards and the NHS England national service specification for children’s and young people’s services, which providers are contractually obliged to follow. NHS England is already in the process of strengthening that current service specification.

Regarding points raised by the noble Lord, Lord Kamall, and my noble friend Lord Davies on the contents of the care and treatment plan and patient discharge plan, as my noble friend Lord Davies kindly set out for me, which I appreciate, the Government have consulted on the required contents of the care and treatment plan, as originally proposed by the independent review. The expected contents of the plan are described in the delegated powers memorandum, which has been published online. I understand the points that my noble friend made; we will return to them regarding what we intend to include in the patient discharge plan.

I turn to Amendment 59, tabled by my noble friend Lord Davies and supported by the noble Baronesses, Lady Tyler and Lady Neuberger. The plan needs to include details of interventions aimed at minimising financial harm to the patient where this is relevant to their mental health recovery. My noble friend asked for my agreement on this point. I hope that he will take that in this way. We intend to set out in regulations, rather than in primary legislation, what that plan must include. We will consider personal financial matters that are relevant to a number of the elements that we intend to require in regulations, such as the services that a patient might need post discharge. My noble friend’s point, and that of the noble Baronesses, is very well made and is taken on board.

Turning to Amendment 60A, tabled by the noble Baroness, Lady Barker, I confirm that the Bill sets out who is responsible for the statutory plan. For in-patients, this is the clinician who is responsible overall for the patient’s case. The quality of plans for detained patients is monitored by the CQC. Any housing, accommodation or wider social care needs that are relevant to the patient’s mental health recovery are already captured within the scope of the statutory care and treatment plan. We intend to require in regulations about the content of the plan that a discharge plan is a required element of the overall care and treatment plan—which noble Lords rightly have pressed the need for. Existing statutory guidance on discharge sets out that a discharge plan should cover how a patient’s housing needs will be met when they return to the community. Currently, where a mental health in-patient may benefit from support with housing issues, NHS England guidance sets out that this should be offered, making links with relevant local services as part of early and effective discharge planning.

Where a person is receiving housing benefit or their housing is paid for via universal credit, there are provisions already in place that allow them to be temporarily absent from their property for a limited duration. We know that the vast majority of people entering hospital will return home before the time limit expires, therefore avoiding a negative impact on their living situation.

We intend to use the code of practice to clearly set out expectations on mental health staff around care planning, including consideration of accommodation and housing needs, and also to highlight existing provisions that protect a person’s living arrangements while they are in hospital.

On Amendment 61, tabled by the noble and learned Baroness, Lady Butler-Sloss, we of course recognise the importance of involving parents, guardians and those with parental responsibility in decisions around care and treatment. We have already provided for this in the clause by stating

“any … person who cares for the relevant patient or is interested in the relevant patient’s welfare”.

The clause seeks to include also carers and other family. As I said last week, this is consistent with existing established terminology used in the Mental Capacity Act and the Care Act.

The amendment would also make this a requirement for all patients, not just children and young people. We do not think it is appropriate here to give an automatic right to parents to be involved in an adult patient’s care. However, we have made provisions to ensure that anyone named by an adult patient, including parents, are consulted where the patient wishes them to be.

[Baroness Browning (Con)]

On that last point about adults, I realise this is a more difficult area, but we have debated in this House reports from the charity Mind about adults, and young adults at that, who, when they have been admitted not just to mental health hospitals but to general hospitals and have had difficulty communicating —I go back to autism, but it might not be uniquely autism—hospital staff have said, “They are over 18, so we’re not listening to you, mum”, while standing by the bedside asking why a person is not eating, when there is probably a very good reason why not. We have recorded deaths of young adults because the parents of people over 18 have not been listened to. It is a mantra that I have heard many times, in many situations: “They’re over 18, it’s up to them”, when, in fact, quite clearly, their lives could be saved, or their health improved, if hospital staff had listened to mum or dad at the bedside. That is on the record and we have debated it in the past, so I wonder how the Minister thinks we can resolve it as far as mental health patients are concerned.

[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.

Mental Health Bill [HL]

Baroness Browning Excerpts

Committee stage
Wednesday 22nd January 2025 Lords Chamber

I respectfully suggest that Amendment 136, spoken to by the noble Baroness, Lady Tyler, is too cautious. It calls for a review to be undertaken in 12 months to consider the expedience of a statutory test. Surely the pros and cons, and scope, of a statutory test have already been well canvassed. It is not clear to me what would be gained by further delay and review. I was tempted to suggest that a review, if not kicking the topic into the long grass, would at least kick it into touch. If we have learned anything about the Bill, it is that much of it will not be implemented with anything near the speed of light. Surely this is one topic that can now be confidently grasped and not deferred.

[Baroness Browning (Con)]

With the wealth of his experience in dealing with children, could the noble Lord give the House a feel for whether, when assessing the competence particularly of children from a younger age group, there are cases where they understand the situation that is explained to them but, when a decision is subsequently required, there is less clarity on how to make it themselves? I ask that because I know that, often, certain adults on the autism spectrum in a similar situation can fully comprehend a situation that is explained, if necessary, and have capacity, but making the decision between one, two or more choices is much more problematic.

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[Lord Kamall (Con)]

My Lords, Amendment 57 stands in my name and that of my noble friend Lord Howe. The amendment is an attempt to ensure that patients who are admitted informally to hospital for a mental health disorder are also able to benefit from a care and treatment plan. As noble Lords will be aware, the Bill introduces statutory care and treatment plans but, as drafted, extends that right only to a select group of patients. As per the new Section 130ZA(2) of the Mental Health Act, patients who will be eligible for these plans are those who are formally detained under that Act, those who are subject to guardianship under the Act and those who are under a CTO.

I do not think there is any disagreement that these patients rightly deserve access to a care and treatment plan. But what about informal patients who voluntarily admit themselves for treatment? The Explanatory Notes explain that the purpose of putting these plans on a statutory footing is

“to ensure that all relevant patients have a clear and personalised strategy in place describing what is needed to progress them towards recovery”.

They also detail some of the possible inclusions in that care and treatment plan.

I note, however, that the exact inclusions in the care and treatment plan are to be made by the Secretary of State by regulations at a later date, possibly due to consultation. So, although we may have some idea of what might be included, it would be helpful if the Minister could confirm to your Lordships what the Government envisage will be included or could be included. I am not wanting to put the noble Baroness too much on the spot here.

As many noble Lords might well know, care and treatment plans have been part of the package of mental health treatment in Wales since June 2012 under Section 18 of the Mental Health (Wales) Measure 2010. Those regulations specify that the areas that must be included in the patient’s care and treatment plan include

“finance and money … accommodation … personal care and physical well-being … education and training … work and occupation … parenting or caring relationships … social, cultural or spiritual … medical and other forms of treatment including psychological interventions”.

Can the Minister confirm whether the care and treatment plans in England will follow the same format or possibly be inspired by the same format? Will there be differences? Are there England-specific issues?

I hope the Minister will understand that I have a few more questions. How will the Secretary of State decide what to prescribe in these plans? What level of consultation will there be? Indeed, what level of consultation has there been to date to inform this, particularly with the clinicians who will be responsible for drawing up the care and treatment plans?

One of the things that many noble Lords have discussed during this debate is the fact that we want to see evidence-led practices. We know that, particularly in mental health but also in physical health, these can help to inform care and treatment plans that have a positive impact on clinical outcomes and therapeutic benefit, because they are based on treatments unique to the patient’s needs.

A meta study in 2023 in the United States found that evidence-based practices

“improve patient outcomes and yield a positive return on investment for hospitals and healthcare systems”.

I note the Minister has referred a number of times to the Government making and implementing these changes when resources allow.

The Social Care Institute for Excellence has also highlighted the importance of person-centred care, writing:

“Research on mental health and wellbeing demonstrates that involvement leads to improved service outcomes and enhances mental wellbeing”.


The institute argues forcefully that care plans for mental health patients should include active involvement from the patient. It is therefore vital that care and treatment plans are not developed in a silo; they should be developed in conjunction with the patient. Given the benefits that access to care and treatment plans should bring patients with a mental disorder, it would be more than appropriate for informal patients to be included as well.

If anyone actually listened to what I said in the debate on our second day in Committee, they may be aware that I had some sympathy with the point made by the noble Baroness, Lady Murphy, who is not in her place. She argued that she did not want to extend the independent mental health advocates to informal patients, possibly because of resource constraints but also because of limited evidence on their therapeutic benefit. I could be accused of being inconsistent, but I would say that, for care and treatment plans, the issue is rather different.

The clinicians will draw up these plans. The Bill states that it is the “appropriate practitioner” who will already be treating that patient, so it may not be the same issue of resources. Perhaps it will take extra time, and I understand that time adds up the more you require of a clinician. But, given that the informally admitted patient will already be being treated by a clinician, we would not necessarily be adding much resource or burden on to the clinician, in the same way as if we had extended the IMHAs, as in the argument made the other night.

Therefore, I hope this amendment will extend provisions that will benefit informally admitted patients, as they will benefit the patients already decided upon in the Bill. I beg to move.

[Baroness Browning (Con)]

My Lords, I have added my name to this amendment. I will not detain the Committee long, but I support the amendment and I want to flag the point my noble friend made about Wales and England. To my certain knowledge, when people living further north around the Shropshire border, for example, are admitted, they will almost certainly be offered placements in north Wales. It is important that there is some harmony in these regions; otherwise, it will cause additional problems. I hope my noble friend will press his amendment in due course to make sure that that harmony exists.

[Baroness Butler-Sloss (CB)]

My Lords, I will speak to Amendment 61. I recognise that the purpose of the Bill is to give children and those under 16 greater rights and opportunities to be heard. I entirely agree with that; it is absolutely sensible. But there is a danger of ignoring the fact that parents are basically not considered anywhere in the Bill. They are not in the contents of the Bill or any of the schedules.

Most parents are suitable; some parents are not. It may be that my amendment should perhaps be put in slightly different way, as the noble Baroness, Lady Berridge, has done. I recognise that there is a small percentage of parents who may not have total parental responsibility or, if they do have it, they are in the situation of one parent having what used to be called custody and the other having what used to be called access. For most parents, they care about their children. As far as I can see, they are completely ignored, but they do have something to contribute.

I am not suggesting for a moment that parents should make the decisions. What I am asking the Minister to do is to give them the chance to be heard; that is all I ask. They really should, throughout the Bill, be consulted where that is appropriate, but they are not put in for consultation, as far as I can see, in any part of the Bill. This is one place where that really will not do.

Speaking as a parent and grandparent, I would be extremely upset if my child was about to be detained and everybody was discussing what should happen to my child, but nobody asked me. At the moment, as far as I understand, the Government do not seem to think that parents, special guardians or anybody else who happens to have parental responsibility need to be consulted.

Mental Health Bill [HL]

Baroness Browning Excerpts

Committee stage
Monday 20th January 2025 Lords Chamber

[Baroness Barker (LD)]

My Lords, I shall speak to my Amendment 34. As I do so, I extend my condolences to the noble Baroness, Lady Hollins. We miss her very much today. She was extremely helpful to me only a few days ago when we were discussing the subject of this amendment, so I hope I do her a lot of justice with this.

We have heard time and time again that people with learning disabilities and autism find themselves on the wrong end of diagnoses made by practitioners with the best of intent, quite often when people are at points of severe distress, that are inappropriate because the people making them have not perhaps had the degree of experience and knowledge of working with people with learning disabilities and autism as they would otherwise have done.

We started to discuss last week that, while there are mental disorders for which detention in the sorts of facilities that we fund in acute hospitals in the NHS is right and appropriate, there are also some people for whom detention in those circumstances is absolutely not; it is an aggravating factor. Therefore, in my amendment I am seeking to address that issue: not just the competence of the people making decisions about detention and treatment but also the confidence with which they, as professionals, can approach the jobs that they are increasingly being required to do. Knowledge and understanding of learning disability and autism is expanding all the time. We now have a greater number of adults than ever before who, at stages in later life, are being diagnosed as being autistic, and I am quite sure that quite a number of those people have been subject to misdiagnosis.

The particular thing that I want to focus on is training for people who are responsible for detention and high levels of treatment. Noble Lords will be aware of the tragic case of Oliver McGowan, a young man with learning disabilities who was inappropriately treated and died. There has been an amazing campaign by his mother to ensure that that does not happen to other people by making sure that anybody who is involved in the provision of mental health services has undergone appropriate training and understands learning disabilities and autism.

My understanding from Oliver’s mother is that there are three tiers of training. Tier 1 is a level of training which is required for all people who work generally with people with learning disabilities and autism. They need to have this general level of awareness. Tier 2 is for health and social care staff and others with responsibility for providing care and support for a person or people with learning disabilities or autistic people but who would seek support from others in a complex management and decision-making process. They would be part of a team referring up to others. Tier 3 is specialist training for professionals who have a high degree of autonomy and are able to provide care in very complex situations, which might include people with learning disabilities and autism.

The training appears to be sequential. You have to have completed tier 1 training in order to go on to tier 2 and then tier 3. Tier 1 is an e-training module which takes about half a day. As far as I understand it, about 1.5 million people have done that. That is a good thing: we are getting to a greater basic understanding of learning disability and autism by many people across the NHS going about doing their jobs. Tier 2 is a one-day intensive training programme, and that has not gone so well. There have been problems with its implementation, and it is not clear how many people have undergone that training. There are also some quite considerable questions about the quality and scope of that training.

Tier 3 is not part of the Oliver McGowan programme, although it is the most relevant to this Bill. As of December 2024, the Department of Health website makes absolutely no mention of tier 3 training at all. Can the Minister tell us where the development of that training is up to, and who is responsible for ensuring that the content of it is suitable? Is it sufficiently developed for people who are having to make very difficult decisions, particularly around detention of people who are quite often in a state of disturbance at the point at which that decision is taken? If we do not follow up on this tier 3 training, then we are going to carry on in the situation where we are now, where we know that people are being wrongly diagnosed by people who, perhaps, should not be expected entirely to understand them because their professional training up to this point has largely not included such people.

The noble Baroness, Lady Murphy, and I bow to her superior knowledge, very much made the case to us last week that we are talking about different types of mental disorders and very different specialisms across the mental health services. I am therefore asking that anybody who is in a position of making the decision to detain—and let us remember that people are making decisions to detain not just under the mental health legislation but also, at times, under the mental capacity legislation—should be appropriately trained. That is why I put down my amendment which, I admit, is not perfect, but I hope that the Minister might take some of my point and my intent and that we might take this forward together.

[Baroness Browning (Con)]

My Lords, I shall speak to my Amendment 42A in this group, which follows on from the two previous amendments from the noble Lord, Lord Scriven, and the noble Baroness, Lady Barker, particularly the details that the noble Baroness has gone into about the need for training and expertise for people who are dealing across the piece with those with autism and learning disability and, importantly, when those clinicians take the decision to admit somebody. As we know, one of the problems that is facing us and why it is so important that these issues have come forward in this particular Bill is because there have been so many inappropriate admissions where people have been detained for so long that it has become a scandal.

--- Later in debate ---

[Baroness Merron (Lab)]

I would be very pleased to write to noble Lords, as the noble Baroness suggests.

Amendment 42A, in the name of the noble Baroness, Lady Browning, which the noble Lord, Lord Kakkar, also spoke to, relates to appropriate expertise in learning disability and autism for medical practitioners with responsibility for recommending admission for treatment. We strongly agree with the principle of this amendment. The current code of practice sets out that, where a patient is known to belong to a group for which particular expertise is desirable, at least one of the professionals involved in their assessment should have expertise in working with people from that group wherever possible. The code also makes clear that consideration should be given to any disability the person has in order that the assessment has regard to that in the way that it is carried out.

The noble Baroness, Lady Browning, asked further about how the Bill will make sure that professionals have the right skills and expertise. This whole area rightly comes up repeatedly when we debate.

I accept that it is crucial that those with a learning disability and autistic people are dealt with sensitively and professionally. It is crucial that clinicians are able to make distinctions between a learning disability or autism and any co-occurring mental health disorder—that point was made powerfully. It is a matter for clinical judgment to determine whether a person with a learning disability or an autistic person meets the criteria for detention under Part II, Section 3 due to a co-occurring psychiatric disorder. To assist clinicians in decision-making, we will update the code of practice to provide the guidance that will be necessary, and I hope that that will make a major change.

[Baroness Browning (Con)]

I am grateful to the Minister and very encouraged by her response. I want to flag up something else that I raised. Occasionally, at some point of crisis for undiagnosed adults, the question is asked: could this be autism? At that point, we need people who have a very good working knowledge for them to raise that question, because it can make a world of difference if they are right. It is not just about somebody who presents with a diagnosis; it is about those who are undiagnosed. I do not know the quantity, but my gut feeling is that there are quite a lot of adults out there who are still undiagnosed. I do not know how the Minister will accommodate that situation.

[Baroness Merron (Lab)]

The noble Baroness makes a good point. Indeed, not everybody has a diagnosis. I suggest that, when we look at provisions, we should make clear—through the appropriate means and not in primary legislation—how the practice should take account of the point that she made very well. I will be extremely mindful of that.

We believe that the code of practice is the most appropriate place to articulate the type of experience that might be required in this area, through a non-exhaustive list of practical examples, which would avoid the need to define in primary legislation exactly what constitutes sufficient experience. The reason for that is to allow flexibility on the particular needs and circumstances of the individual. As we update the code of practice, we will engage with expert stakeholders to improve practice and to reflect the new Act. The code will be laid before Parliament before its final publication. I thank the noble Baroness, Lady Murphy, for her comments in this area.

The number of long-term detentions was rightly raised by my noble friend Lord Beamish and the noble Baronesses, Lady Murphy and Lady Browning. The number of people with a learning disability and autistic people in mental health hospitals is indeed unacceptable. Too many people are still being detained who could be supported in their communities with the right provision. Work is under way to address this. For example, NHS England has allocated £124 million of transformation funding for services, which includes funding to reduce reliance on mental health in-patient settings. Noble Lords can be reassured that I will take a particular personal interest in this area.

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Moved by

[Baroness Browning]

43: Clause 6, page 12, line 33, at end insert “, including access to a prescribing psychiatrist local to their place of residence”

[Baroness Browning (Con)]

My Lords, Amendment 43 in my name is to a list of grounds under which community treatment orders will be allowed. I have to say that, judging by the Second Reading of the Bill, including my own contribution, community treatment orders have not been a great success. I think that is a general view but here they are, listed in the Bill, and it is incumbent upon us to make them as strong and comprehensive as possible so that they are fit for purpose, if they are to remain.

I felt that there was an omission from the list of grounds in the Bill. I say to the Minister that I put my hand up immediately: I have had this this discussion with her outside the Chamber. This is something that I want to put into the Bill, but I am still not entirely sure that this is the right place for it. I hope she will not bat it out of—I do not know what to say in cricketing terms because I do not have my noble friend’s expertise in cricket. Anyway, I shall quickly move on.

We know the problem: there is a shortage of psychiatrists. In some areas, people are well served but in others they are not. Today’s debate has focused on psychiatrists who have expertise in autism and learning disability.

I am looking at a scenario where a person has autism or a learning disability, as well as a recognised mental health condition, and is discharged into the community on a community treatment order. Despite what I have said about my reservations about them in principle, because there is such a paucity of psychiatrists, particularly those who have expertise in autism and learning disability, once that person is being cared for on a community treatment order—or, for that matter, someone in the community who is not on a community treatment order but is medicated—where are the psychiatrists that they can turn to?

To my certain knowledge, there are around the country some integrated care boards that feel they are serving the autism community well enough if they can identify psychologists with expertise. There is nothing wrong with that, as there are excellent psychologists around the country, but of course, psychologists cannot prescribe. So there is a real challenge for people in that situation who need ongoing medication—the dosage of which may need to be changed, for example—having local access to an appropriate psychiatrist.

I am a bit nervous about the wording of the amendment—it is my wording, but I am still nervous about it—as it includes the word “local”. I assure the Minister that I am realistic enough to know that there is not going to be an appropriate psychiatrist just round the corner, but in many cases, as I am personally aware, there is not even anyone in the county. If someone has been subject to an in-patient stay in a mental health hospital, admitted in an emergency, that does not necessarily mean they are going to be in a local hospital; because of the shortage of beds, they may be quite far from home. So the community treatment order may not be exercised close to where someone has previously been an in-patient.

We also have problems at the borders between Wales, England and Scotland. For mental health services, there are mutually agreed agreements about where patients can be seen, and particularly where hospitalisation can take place. However, if community treatment orders are to be maintained, on discharge they may well be a long way away from where they live. That is why I have added my wording at the end of the list of grounds for community treatment orders.

We in Parliament make a great virtue of saying that decisions are made at local level. That is all well and good, but if the decision made at local level is, “We don’t need a psychiatrist within our geographic area who has that expertise”, that is not much help to the patient. I have shared with the Minister cases involving people who are not necessarily under a community treatment order but who have an ongoing need for medication and cannot access a psychiatrist with that expertise, and who end up having to travel to centres of population and paying very nice fees, thank you, privately because it is not available in any other way. That cannot be right, which is why I have added my wording to the list of grounds for CTOs. If the Minister does not think that that clause is the appropriate place for it, I will understand; but if so, I hope she will tell me where in Bill it should go, because I really believe it should be there.

As a postscript that has nothing to do with community treatment orders, for people with mental health conditions who need medication, people with autism without mental health conditions—I am looking away from the noble Baroness, Lady Murphy, at this point—and people with autism who need ongoing medication for, for example, autism-related anxiety, personalised medicine is going to be a real advantage, enabling them to know exactly the right drug and the right dosage. It is out of reach on the NHS at the moment, but personalised medicine, using DNA testing to get the right dosage, is very good. I hope we are going to see it pretty soon, particularly in mental health. Let us start with mental health. I beg to move.

House resumed. Committee to begin again not before 8.30 pm.

Mental Health Bill [HL]

Baroness Browning Excerpts

Committee stage
Monday 20th January 2025 Lords Chamber

[Baroness Merron (Lab)]

Indeed the noble Baroness did try, and I have therefore taken its intention at face value.

The Bill removes the requirement for an automatic referral following the revocation of a CTO. This was a recommendation of the independent review which found that, in practice, the automatic referral was an ineffective safeguard, as often the patient is back in the community or back in hospital as a Section 3 patient before the tribunal has had the opportunity to review their case. Therefore, the current process creates a burden on tribunals but does not protect the patient. The Bill improves other safeguards for patients on a CTO, including increased access to tribunals. For these reasons, I hope that the noble Baroness feels able to withdraw her amendment.

[Baroness Browning (Con)]

My Lords, I am grateful to everybody who has contributed on this group of amendments. Everybody has bought something different to the table. There have been some good things. I think we are all grateful to the noble Baroness, Lady Parminter, who led us at Second Reading to have a better understanding of how CTOs can help with eating disorders. I just think back to 2006 and the pre-legislative scrutiny committee of the previous amendment of the 1983 Act. I think there are three of us in the Chamber tonight who were part of that pre-legislative scrutiny. I think that the noble Baronesses, Lady Murphy and Lady Barker, and I were members and I recall the debate on community treatment orders at that time, 20 years ago, when we had quite a lot of strong reservations about how they would work in practice.

Despite some of the good things we heard tonight on this group, I still sense that reservation. I think that if what we had before us was 20 years of lived experience—practical examples of where CTOs have been good, where they have been bad, where they needed to be amended and where they have been amended—we would feel a lot more confident. Too many parts of this jigsaw still seem to be missing to make what I feel is a substantial change to the 1983 Act 20 years later and know that we have got it right. I always think that when we are in doubt about legislation, there is that old, hackneyed thing: “Suppose this was something in a court. What would they say about this? What was Parliament’s intention at the time?” Can I actually define Parliament’s intention at the time? I am not sure that I can define it in as much detail as I would like, in order to feel we are doing the right thing as far as this legislation is concerned.

I thank the Minister. She has, as always, been as helpful and courteous as she can be with this very difficult issue, but I do not quite feel that we have got there yet. I beg leave to withdraw the amendment.

Amendment 43 withdrawn.

Mental Health Bill [HL]

Baroness Browning Excerpts

Tuesday 14th January 2025 Lords Chamber

[Baroness Browning (Con)]

My Lords, this group includes Amendment 22, tabled by the noble Lord, Lord Scriven, to which I have added my name—to which I will not speak because I think it will be fully discussed—and two amendments in the name of the noble Baroness, Lady Hollins. She is a dear colleague and friend of many years, and this is my first opportunity in the debate to express my personal sympathy for her loss this week.

I will speak to Amendment 28 in this group, which is in my name. In addition to local authorities’ market-shaping function—I have to say I find the choice of words there a little difficult; I had to read it a few times just to make quite clear that I know what that is—the Bill includes reference to the “commissioning functions” of local authorities when having regard to information from risk registers and ensuring that the needs of people with a learning disability and autistic people are met.

Under the Bill, new Section 125G makes it clear that integrated care boards’ commissioning functions are related only to health services. New Section 125E(3) makes clear that

“‘market function’, in relation to a local authority, means its function”

to

“promoting diversity and quality in provision of services”

under the Care Act 2014. This amendment would add local authority commissioning explicitly, by which is meant the local authority’s commissioning duties in relation to providing care and support under the Care Act 2014. The proposed duty in relation to local authority market shaping does not adequately cover local authority commissioning. The issue of poor commissioning in relation to this group has been frequently cited in reports. This is an opportunity to redress that and to be clear about their function.

[Lord Scriven (LD)]

My Lords, I will speak to Amendments 22, 24, 25, 26, 29, 30 and 31 in my name in this group. I support Amendment 28, which was just spoken to very ably by the noble Baroness, Lady Browning, and Amendments 36 and 37, in the name of the noble Baroness, Lady Hollins. I want to put on record my condolences to her at what must be a very sad and difficult time.

Quite a number of amendments that I have put down in this group, particularly Amendment 22, are about prevention. It is about getting upstream and trying to use the dynamic support registers—the risk registers—in a better way, and, by so doing, having the correct information that is available to a place, rather than just to an organisation, such as the NHS or the ICB, within that place.

Amendment 22 would ensure that local authorities have an active role in assisting ICBs in identifying people for inclusion in the risk registers. NHS England’s policy and guidance on dynamic support registers states:

“Early identification of people at risk of admission to a mental health hospital and their access to person-centred planning and support are essential for the prevention of avoidable admissions”.


Many people with risk factors will first come into contact with a local authority, particularly people with learning disabilities and autism. It is important that the local authority has a clear responsibility to assist ICBs in identifying people for inclusion on the register, to ensure that people get the right support at the right time. I hope that the Minister will take this amendment in the spirit that it is given. This is an important issue which is not strong enough in the Bill and which really needs to be taken account of.

There have been difficulties for some people getting enrolled on the DSR, and this is particularly true for autistic people without a learning disability. Additionally, NHS England data shows that 52% of autistic people and people with a learning disability detained in a mental health hospital are not on a risk register prior to admission. Therefore, there is a gap, and the Bill gives us a chance to help plug it. Hopefully, placing this duty on local authorities will facilitate greater uptake and enrolment on the register for all, therefore helping to reduce admissions, improving support in the community and being a good preventive measure.

Coupled with this, Amendments 36 and 37 in the name of the noble Baroness, Lady Hollins, would help with that prevention role by making sure that proper provision was available. Taken together, Amendments 22, 36 and 37 would be a really good group of steps forward to help with preventive measures to make sure that all people who can be identified who come into contact with a local authority but are not known to the ICB go on the register, and that provision is made.

Amendments 24 and 29 would change the current language in the Bill. After listening to debate on previous amendments, I will not labour the point because I have a good idea what the Minister might say, but again I think the provision needs to be strengthened so that ICBs and local authorities have a duty to consider the risk register when exercising commissioning and marketing functions.

In Amendments 25 and 30 there is the same approach by strengthening the words in the Bill to ensure that ICBs and local authorities have a duty to ensure that the needs of autistic people and people with a learning disability are met in the community wherever possible. The current language in the Bill states only that ICBs and local authorities must “seek to ensure” that the needs of autistic people and people with a learning disability are met. This wording is vague and does not compel a strong enough duty to meet the needs of people in the community. Again, the amendments in the name of the noble Baroness, Lady Hollins, would strengthen my amendments even further.

These amendments are important. I hope that the Minister has listened very carefully, will make efforts to implement some of these steps and reports back on Report.

Mental Health Bill [HL]

Baroness Browning Excerpts

Tuesday 14th January 2025 Lords Chamber

[Baroness Bennett of Manor Castle (GP)]

My Lords, in moving Amendment 4, I will speak to the Schedule 1 stand part notice, which is consequent on Amendment 4. Both appear in my name. I will not speak to the other amendments in this group, although my understanding is that Amendments 5 and 38 to 41 inclusive—tabled, variously, in the names of the noble Baronesses, Lady Browning and Lady Hollins, and the noble Lord, Lord Scriven—are effectively trying to achieve the same thing but by different means. I will leave them to speak to their amendments, because I want to explain why I have structured mine in this way.

I must begin by thanking Jen Smith at the Bill office for her great patience and expert assistance to this non-lawyer in producing this and a number of other amendments. I also want to stress that I am not, unlike many people taking part in this debate, an expert in this area, but I seek to represent voices of people who have reached out to me who may not otherwise be heard in your Lordships’ Committee.

I will set out the background to Amendment 4. I had a detailed briefing from the group Liberation, a user experience group led by people who have experience of mental distress and trauma, which has the slogan “for full human rights”. It is seeking a complete end to involuntary detention in psychiatric hospitals and forced treatment for the people it represents—people given mental health diagnoses. It asked me to exclude all people from what is known as detention or sectioning.

Liberation says that involuntary detention and forced treatment are forms of disability-based discrimination, and these people should not be subject to them. This may not be the case under the European Convention on Human Rights—I acknowledge that the noble Baroness, Lady Merron, signed a statement to that effect in the Bill—but I understand that it can be argued to be the case under the UN Convention on the Rights of Persons with Disabilities. I note, however, that the Parliamentary Assembly of the Council of Europe has, in line with Articles 12 to 14 of the UN CRPD, strongly endorsed a complete end to involuntary hospitalisation and compulsory treatment and recommended the removal of Article 5.1(e) from the ECHR—the paragraph that limits right to liberty if people are judged to be “of unsound mind”. It describes it as

“not compatible with our 21st-century understanding of human rights”.

I note that the recent report on the situation in the UK from the UN Committee on the Rights of Persons with Disabilities, particularly paragraphs 79 and 80, expresses concern about the lack of government measures to end disability-based detention and that the then Conservative draft mental health Bill continued to allow involuntary detention and forced treatment. The Bill brought before us by the Labour Government still has the same kind of provisions. The argument is that the Bill as it stands remains non-compliant with the UN CRPD deinstitutionalisation guidelines and the World Health Organization publication Mental Health, Human Rights and Legislation: Guidance and Practice, in which countries are urged to replace institutions with high-quality services.

I can almost feel your Lordships’ Committee saying, “How can that be possible?” Starting from now, that looks like such a long way away. That was indeed the question that I put to Liberation, which presented me with a number of case studies from around the world. I imagine that the Minister is aware of the case of Trieste, in north-eastern Italy, which almost managed to abolish involuntary detentions. They have been replaced with wide-ranging and accessible community services, based on a whole-person approach. Its community mental health centres are open 24 hours a day, seven days a week, and they play a key role in preventing people reaching a point of crisis. This has enabled people with mental health diagnoses to remain in and be part of their local community, in line with Article 19 of the UN convention. Compulsory psychiatric treatment orders are still possible, but the numbers are very low and orders typically last seven to 10 days.

In Spain, Act 8/2021 recognises the legal capacity of all adults and stipulates that disabled people should receive the same legal treatment as non-disabled people, including those with mental health diagnoses and learning disabilities. This is still not complete equality but it is heading that way and has made further progress than we have.

Costa Rica, Peru and Colombia have all taken steps in this direction. In Peru, for example, a recent study on the impacts of crisis interventions indicates that involuntary detention rates have been significantly reduced and that, when people are detained, they typically leave hospital after a couple of days.

In Mexico, the general health law of 2022, a national civil procedure code, says that everybody has legal capacity, including people with mental health diagnoses. It enables access to supported decision-making for everybody. Mexico City, in particular, has set a real lead in delivering on this, but I acknowledge that not all of Mexico has.

Why have I tabled an amendment that would, in effect, end detention for those with autism and learning difficulties? I feel like I must apologise to the people I have spoken to, as I did not feel able to put down another amendment—this a probing amendment, by nature—as I looked at the realistic situation. The noble Baroness, Lady Tyler, in starting our debate, referred to the extreme lack of resources. I and many others have amendments later in the Bill referring to the need for it to specify the level of resources. I am sorry that I did not feel able, even in this probing stage of Committee, to table another amendment. I would like to, and I would very much welcome the Minister’s comments on how we sit in that UN framework and whether the Government have a long-term goal to reach the kind of levels that an increasing number of other countries have attained, as I have just set out in my quick survey.

But I have to look at the reality of the statistics. I have looked at the figures in the briefing from the Royal College of Psychiatrists. The number of recorded detentions in 2023-24 is 52,500. We really have to reflect on that number. Of those, we have seen a fall, to 1,880, in the level of detentions relating to learning disability and autism—that seems a step in the right direction. We are talking about disabilities. Can we really continue, a quarter of the way into the 21st century, to detain people for their disability rather than provide them with the support they need in the community? That is a question this amendment seeks to raise.

I want to reflect on the fact—we will come back to this again and again—that people are not getting the help they need, and that is leading to the state of crisis we have now. I note in Mind’s briefing that people are crying out for help and not getting it. In June 2024, very urgent referrals to crisis teams for adults were 45% higher than a year before. I should here declare my position as a vice-president of the Local Government Association and refer to the LGA briefing, which talks about the significant resource implications for councils of the Bill as it stands as presented by the Government.

There are voices here that should be heard. We should frame this in the context of the international situation of the UN Convention on the Rights of Persons with Disabilities. That is why I have tabled this amendment. I hope we can have a constructive discussion and see some real progress here today. I beg to move.

[Baroness Browning (Con)]

My Lords, I declare my interest as a vice-president of the National Autistic Society and a co-chair of the APPG on Autism, and I have responsibilities for close relatives who are on the autism spectrum.

I will speak to Amendment 5 first, and to the Mental Capacity Act, which is not the Act we are looking to change but it is my contention in this proposed clause that the Mental Capacity Act has a relationship with the Mental Health Act.

There has for some years been concern about the deprivation of liberty safeguards as defined in the Mental Capacity Act 2005. They were inserted into the Mental Health Act 2007 following the Bournewood judgment in the European court which involved an autistic man whose liberty was denied, whose carers were ignored, and who had had what I can best describe as an autistic meltdown that resulted in his incarceration for a very long time.

Although the Mental Capacity Act has much to commend it, there has been ongoing concern about the deprivation of liberty safeguards—often referred to as DoLS—and I managed to obtain a House of Lords inquiry into the Act in 2013, ably chaired by the noble and learned Lord, Lord Hardie, who is in his place today. I will quote a section of the summary of that inquiry that deals specifically with deprivation of liberty safeguards. The House concluded:

“The provisions are poorly drafted, overly complex and bear no relationship to the language and ethos of the Mental Capacity Act. The safeguards are not well understood and are poorly implemented. Evidence suggested that thousands, if not tens of thousands, of individuals are being deprived of their liberty without the protection of the law, and therefore without the safeguards which Parliament intended. Worse still, far from being used to protect individuals and their rights, they are sometimes used to oppress individuals, and to force upon them decisions made by others without reference to the wishes and feelings of the person concerned”.

--- Later in debate ---

[Baroness Browning (Con)]

The noble Baroness asked me a question. Was it rhetorical? I wonder whether she could accept that autism is different. From the time that Kanner first identified autism, which is what a lot of psychiatric bases are based on—we then had Asperger and others, and the very good, more recent documentation from Lorna Wing, with whom I am sure she is familiar—autism has been different. If people doubt that, it is important to note that, apart from the Mental Health Act, the only other condition, however you label it, to have its own Act of Parliament is autism. In the Autism Act 2009, this Parliament unanimously agreed—in both Houses—that autism is different and deserved its own Act of Parliament.

[Baroness Murphy (CB)]

I would say that all mental disorders are different but that they cannot all have their own Acts of Parliament. I do not accept that autism is different. Of course, it is different in the way that it manifests—

--- Later in debate ---

We strongly agree with the principle that people with a learning disability and autistic people who would no longer meet the proposed Section 3 detention criteria are instead detained under the Mental Capacity Act. We do not want this to be a loophole, back door or anything of that nature. We want the effect of the Bill to be that, wherever possible, these people are instead supported in the community when they do not have a need for hospital treatment for a psychiatric disorder.

[Baroness Browning (Con)]

The Minister will not be surprised to hear that I like what she just said. Is there no way she can put that in the Bill under a government amendment?

[Baroness Merron (Lab)]

I am grateful for the invitation, as always. Government amendments will be considered as we progress through Committee, but I say that as a broad point, as I know the noble Baroness understands.

The intention of the provisions in the Bill on registers and commissioning is that people with a learning disability and autistic people are not detained but supported in the right way. The proposed changes to Part II, Section 3 will be commenced only where there are strong community services in place.

--- Later in debate ---

[Baroness Barker (LD)]

I thank the Minister for giving way again. Listening to the noble Baroness, Lady Browning, set out and explain her amendments, it seems to me that they require the people making the decisions about whether to detain somebody to be clearer about which law they are using to decide to detain at a particular point for a particular person. As I understand it, they are not excluding or preventing the use of either bit of legislation for an individual; they seek just to have greater clarity about which legislation is being used and why, and therefore what protections the person will have. The Minister said that, if these amendments go through, some people will, somehow, be excluded from the correct treatment. Is there a particular group of patients or conditions that are at risk if the amendments tabled by the noble Baroness, Lady Browning, are implemented? Can the Minister give us some examples? Otherwise, I fail to see the logic of what she is saying, given the explanation that the noble Baroness, Lady Browning, gave the Committee.

[Baroness Browning (Con)]

I agree. The amendment seeks to strengthen and to clarify, rather than to make changes that would be completely different to what is intended in the Mental Capacity Act.

[Baroness Merron (Lab)]

I am grateful for the noble Baronesses’ comments. I will come back with some examples before I sit down, because that is a very good suggestion. If I fail to do so, I will gladly provide them in writing.

Amendment 35, tabled by the noble Baroness, Lady Murphy, intends to provide a route to detain people with a learning disability and autistic people who do not have a diagnosed psychiatric disorder. Detention could be authorised only with the approval of the tribunal in “exceptional circumstances”, with power to provide guidance on what those circumstances will be in the code of practice. The amendment seeks to address the needs of those with a learning disability and autistic people, with whom I know the noble Baroness is concerned, where a considerable risk is being posed in the community, but who do not also have a diagnosed psychiatric disorder warranting detention for treatment under Part II, Section 3.

Our clear intent throughout the Bill is that people should be detained beyond Section 2 only when they have a psychiatric disorder that requires hospital treatment. It is our feeling that this amendment runs contrary to that intent. I am also grateful to the noble and learned Lord, Lord Hardie, for his comments on Amendment 35.

We also have some concerns about the scope of the “exceptional circumstances”, which would potentially result in a position no different to the current effect of the Act. It is unclear, in advance of the code of practice being developed, how broadly this might be defined. There would be considerable scope for different, divergent approaches in comparable cases, which, again, I know is not the intent of noble Lords.

Mental Health Bill [HL]

Baroness Browning Excerpts

2nd reading
Monday 25th November 2024 Lords Chamber

[Baroness Browning (Con)]

My Lords, I declare an interest as a vice-president of the National Autistic Society, with the noble Lord, Lord Touhig, and as having some responsibility for family members on the autistic spectrum.

Like the noble Baroness, Lady Barker, I am a veteran of the Mental Health Act 2007 and the Mental Capacity Act. When I came to this place, I was pleased to be involved in the review of the Mental Capacity Act. This and other Bills of this nature would merit looking at, to see what happens after we legislate. My concerns with the 2007 Act were, primarily, community treatment orders. Looking at the Bill, I see that these are to be altered, but I still share the view of the charity Mind, which would like to see them abolished altogether. I hope that, as we go through Committee, we can make substantial changes to what we have in front of us.

I was also concerned about the deprivation of liberty generally and the situation for autistic people in relation to mental health services. I am still concerned, but I welcome the proposed changes for people with autism and learning disabilities, making it illegal to detain an autistic person or a person with a learning disability unless they have a coexisting mental health condition. Presently, of the 1,385 autistic people detained in mental health facilities, 93% are detained under the Mental Health Act—they are not voluntary patients.

I make no apology for making the case for autism being a special condition that needs to be treated differently to other conditions. I say that because, apart from the Mental Health Act, autism is the only medical condition that has its own Act of Parliament. That tells you that something about it is different from other conditions. In 2009, both Houses of Parliament passed a short but important Act, which was introduced by my friend the late right honourable Cheryl Gillan MP.

So what is it about autism that makes it so different that we should have special regard to it as the Bill progresses? I will first look at how autistic people come into contact with psychiatric services generally. Autism is, of course, a spectrum, so we are talking about a wide range of conditions. There is the old adage that, if you have met one autistic person, well, you have met one autistic person. Although we may look at commonalities among this whole group of people, they are all individuals and should be treated as individuals.

Autistic people come into contact with psychiatrists, although a wider range of people diagnose autism now. I give apologies immediately to the eminent psychiatrists in this Chamber, but, over 32 years in this House—and having taken up many cases and I hope assisted several Members with their casework—I have seen what can often happen if a psychiatrist does not understand autism or, even worse, receives a patient with an autism diagnosis from another psychiatrist but will not accept that diagnosis. That is shocking. So often, misdiagnosis can occur when somebody is admitted to a mental health institution but the psychiatrist will not accept that diagnosis and starts to rediagnose somebody, giving them medicated treatment that clearly does not work. I have seen the results of that.

I particularly remember—it is fixed in my mind—a young man who was a very good artist and whose autism diagnosis was overridden when he was admitted. The diagnosis was, “No, no—this is schizophrenia”. Interestingly, that is a common mistake. As each medication was applied and did not work, that young man’s ability to hold a paintbrush and produce the sort of work he produced before was completely diminished. So autistic people come into contact with psychiatrists, and my point about psychiatrists is that they must have specific autism training. There is a huge lack of psychiatrists generally but particularly psychiatrists with that type of training.

As the noble Lord, Lord Touhig, rightly said, although autism itself is not a mental health condition, people with autism can of course have a mental health condition or a learning disability. But, out in the community, if an autistic person needs medication of one sort or another—I am talking not about drugs that are used for psychosis but drugs to help control anxiety, which is a natural side-effect of autism—accessing the correct drugs through a psychiatrist is impossible in some parts of the country. It is very much a postcode lottery, because psychologists—whom autistic people are very often referred to—cannot prescribe. So, if there is no local psychiatrist whom a GP can refer you to, your only option is very often to pay to see the right person privately. If any of us had a cardiological condition, we would not expect to have to pay for a cardiologist to treat us. I believe the Bill should address access to appropriate—that word is used so often—care from trained and qualified people, whether psychiatrists, CPNs or whoever.

The other thing about autistic people that must be taken into account is that so many of them have sensory side-effects to their autism. There is a vast variety of side-effects, which perhaps may not seem important to people who do not experience them. They can be anything from lighting to noise, sound and the proximity of other people to them. These things need to be taken into account, like the things that have been said already: what a horror it is for any of us to be admitted to A&E now, but, frankly, it can produce very serious results for an autistic person.

I would like this Bill to produce the right training and the right services in the community. For autistic people, the downward spiral into very severe anxiety is there when community services are not provided. When I talk about community services, I am not always talking about something that will cost a fortune; it is actually the low-hanging fruit of low-cost measures. Sometimes it can be as simple as something that provides somebody—a child or an adult—with a friend: somebody with whom they can form a relationship. That does not cost a fortune. However, when money is tight—and we know money is tight—those are the first sorts of services that get taken away, and the downward spiral of an autistic person when these services are no longer provided or are not provided in the first place is what results in them needing to come into contact with the more serious mental health services that this Bill will address.

The noble Baroness, Lady Watkins, mentioned parental responsibility, and in this debate we have not yet mentioned lasting powers of attorney. These are powers for people who are able to sign them when they have capacity, which may well be a very useful thing when people are denied access to their relatives or carers. I hope we will include that in the Bill.

Stroke Treatment

Baroness Browning Excerpts

Wednesday 27th March 2024 Lords Chamber

[Lord Markham (Con)]

The noble Lord is quite right. Many noble Lords will have heard me echo Sir Chris Whitty’s words that his major concern about the whole Covid period was that people missed out on blood pressure and cardiovascular checks, which can be early-warning indicators. That is why we see prevention as a major leg of what we are trying to do, through having blood pressure checks and inviting everyone to have their health check every five years. What we are working on, and will be bringing out shortly, is greater use of digital for health checks, to do precisely what the noble Lord says.

[Baroness Browning (Con)]

My noble friend wrote to me in response to an Oral Question on the subject of strokes to explain how AI is enabling many hospitals now to be able to diagnose within the three-hour timeframe and give appropriate treatment, thus enhancing the recovery of stroke patients. I mentioned it to my local general hospital, and I am sorry to tell him that it does not have this AI technology. When does he think it will be rolled out nationally?

[Lord Markham (Con)]

This AI service, Brainomix, is one of the ground-breaking services that are part of the future of the NHS. It is part of the whole service, which will include video triaging. It is currently in 65% of hospitals, and I am sorry that it is not in my noble friend’s hospital. We have a target to increase that quite rapidly to 75%. I will look into the particular hospital that she mentions. It really is ground-breaking; overall, where we have got everything in place, full recovery has gone from 16% to 48%.

Allied Health Professionals: Prescribing Responsibilities

Baroness Browning Excerpts

Tuesday 6th February 2024 Lords Chamber

[Lord Markham (Con)]

I will need to get back to the noble Baroness on the precise timeline. We have an SI debate taking place shortly on physician associates, and a key step is that first, you have to be part of a legally regulated body. Once you are, the formal reviews can take place, along with the training. I will write giving the details, but we are keen to allow speech therapists and others to prescribe as well.

[Baroness Browning (Con)]

My Lords, people on the autistic spectrum who need prescribed drugs for their condition and associated reasons have to have a psychiatrist prescribe them because psychologists cannot do so. I am not for one minute suggesting that all psychologists should be allowed to prescribe, because they are quite a range of people. However, in parts of the country where there is no psychiatrist—I speak from personal experience—who can prescribe to autistic patients, can we see whether certain psychologists with a knowledge of autism could be trained to fill that gap?

[Lord Markham (Con)]

Yes, I will happily undertake to do that. There are a couple of mechanisms we can use. We can give them an independent prescribing ability, or we can give patient group directions on a certain number of items. That is what we are doing with Pharmacy First, for instance, in respect of the seven conditions. Clearly, we could look at doing that with the relevant autism drugs.

Dementia

Baroness Browning Excerpts

Thursday 18th January 2024 Grand Committee

Asked by

[Baroness Browning]

To ask His Majesty’s Government how they plan to create a parity of esteem between health and social care to address dementia.

[Baroness Browning (Con)]

My Lords, I declare my interests as co-chair of the All-Party Parliamentary Group on Dementia and as an ambassador of the Alzheimer’s Society. I bring this debate to the House today because dementia affects 944,000 people in the UK, or one in 11 of those over the age 65, and the number is predicted to reach 1.6 million people by 2040. It is the leading cause of death in this country.

Dementia is an umbrella term for a number of conditions, the most prevalent of which is Alzheimer’s. Symptoms include memory loss, behavioural change, motor function loss and visual processing issues, among many others. It is degenerative and terminal and, as of now, there is no cure. All stages of the disease have a need for both social care and healthcare, from diagnosis to death. Ironically, diagnosis is still a long wait in many parts of the country. Unfortunately, we do not know how long people are waiting because the data is not collected. I will say more later about end-of-life care.

It is essential that these two services—health and social care—work in tandem and are resourced to enable them to do so. This will avoid the historic tension of buck-passing of responsibility, excessive delays in support and letting down both the patient and their carers. I know that many Members of this House have first-hand experience of caring for people with dementia—I do myself. To give a real feel for what this is like, I commend the current ad on our screens from the Alzheimer’s Society called “The Ultimate Vow”—noble Lords may have seen it—which portrays Laura and Adam, a married couple on their dementia journey. It is very moving and also very accurate.

Today, I would like the Minister to address healthcare and social support as of equal value and inseparable. That requires not just parity of esteem between them but a reorientation of systems away from siloed professions and a focus on care in hospital. Shockingly, NICE reports that one-quarter of hospital beds are occupied by people with dementia, often due to emergency admissions for avoidable reasons such as falls and urinary tract infections. I therefore say to the Minister that there is no more compelling reason for hospital at home, including residential care homes, than this group of people, and I add that that should also apply to hospice at home. Decades of failure to plan and resource services adequately to enable personalised care for a condition as complex and as common as dementia is long overdue. Starting from diagnosis, all patients should have a care plan, which clearly will need reviewing as things change, for change they will, becoming more challenging over time. In six years of caring for my husband with Alzheimer’s, nobody ever suggested a care plan. The one that I had was one that I devised in my brain. Care plans should apply to everyone, including those who are self-funding.

Less than 65% of people with dementia have a formal diagnosis—a figure we simply would not tolerate for other conditions. We are not talking just about people with memory lapses; at all stages of the pathway trained staff are essential. I welcome the Government’s recent announcements of funding for social care training. Only 45% of the social care workforce have a record of dementia training, but please do not forget healthcare: district nurses receive good training, but training for hospital ward staff, even those on some geriatric wards, requires improvement, particularly on caring for people at the end of life. Some 30% of people with dementia do not die in their normal place of residence. Aside from the disorientating activity of an open ward or an A&E department, we should think twice about admitting anyone with advanced dementia into hospital unless there is a real medical imperative. Neither nurses nor healthcare workers are properly trained to provide palliative care for dementia patients. They certainly cannot provide the one-to-one care necessary. I know that my noble friend will have noted my earlier request for hospice at home for dementia patients.

There are more ways that we need parity and integration, and the establishment of integrated care systems in England provides some hope of a mechanism through which they might be achieved. There is no specific mandate for them to focus on dementia, but they are required to commission on local need.

The APPG on Dementia published a report last month entitled Raising the Barriers, which proposed local dementia strategies for each area, a named dementia lead in each integrated care system and a dementia steering group. Is this special pleading? Yes, it is and I make no apologies for it. The scale of dementia nationally is going to increase and, while we all hope that medical science will one day alleviate this challenge, this is today’s challenge and tomorrow’s and the day after’s. This would be a huge move forward, combining health, social services and the voluntary sector.

Can the Minister say what the rules are for the decision-making of integrated care systems being made publicly available? Recently, owners of care home providing for people with dementia expressed concern to me about the transparency of decision-making, particularly on the transfer from hospital to residential care for the first time.

So far, I have not mentioned the cost to the patient or their carer. We have had many debates in the House about personal expense to the individual. The Alzheimer’s Society estimates that two-thirds of the annual cost of dementia, reckoned at £34.7 billion, is paid for by people with dementia and their families, either in unpaid care or in paying for private social care. In addition, care providers often charge an extra premium because of the complexity of dementia, adding 15% to costs. Additionally, support such as NHS continuing healthcare, including for complex health needs, is not easily obtained for dementia.

I realise that the much-promised reform of social care will be the catalyst that makes the financial cost to the individual more bearable, but that is now deferred until 2025. In the meantime, there is much that can be done to bring parity and fairness to the lives of dementia sufferers and their carers. I hope that the Minister finds constructive suggestions in our contributions to this debate that he can take forward. I am grateful to all Members here and to the Alzheimer’s Society and the House of Lords Library, which provided briefings in preparation for this debate.