(1 month ago)
Lords ChamberMy 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.
(8 months, 4 weeks ago)
Lords ChamberThe 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.
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?
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%.
(10 months, 2 weeks ago)
Lords ChamberI 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.
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?
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.
(11 months, 1 week ago)
Grand CommitteeTo ask His Majesty’s Government how they plan to create a parity of esteem between health and social care to address dementia.
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.
(11 months, 1 week ago)
Lords ChamberI agree with the noble Lord that prevention is key. About half the number of people who turn up at A&E do not need to go to A&E and can be seen in other settings. I completely agree that all the elements in terms of prevention and getting ahead of the problem are key, including where there are issues around food.
My Lords, following on from the question from the right reverend Prelate and his reference to stroke patients, given that there is a three-hour window for stroke patients during which, if certain treatments are given, the outcome is so much better, what have the Government done to ensure that, adding on the ambulance time to the time when the patient then arrives at hospital, more patients are being treated within that window? Is there a target specifically for stroke patients? It makes such a difference.
My noble friend is absolutely correct, and strokes have been a major focus. I am glad to say that was one of the first areas where we rolled out AI everywhere, with the result that we were able to improve treatment times so much—and I will get the precise figures to my noble friend—that the recovery rate has increased by two-thirds as a result. It is absolutely right that this is an area of top focus.
(1 year, 1 month ago)
Lords ChamberMy Lords, I refer to my autism interests as listed in the register and to the fact that, as your Lordships know, I have a family interest in autism. I very much welcome the fact that the noble Baroness, Lady Hollins, has brought her report to the Floor of the House today. We are very fortunate in this House to have her expertise that she shares with us on this and on many other occasions.
As the noble Baroness has said, the report describes statutory confinement as being used to “warehouse” adults and children with a learning disability and/or autism. If I may, I would like to set the scene a bit on autism. It is of course a spectrum—a communication disorder that covers a wide range of intelligence, but because of the complexity of the condition, the report we are discussing can capture any of them. Failure in the community to provide appropriate support raises the risk that any one of them may be admitted and subject to all the horrors that this report exposes, particularly solitary confinement, which in every other context would be regarded as a punishment.
For many adults and children, autism-related anxiety is common. It can often be helped with medication, but that is complex. There is no one quick-fix pill. The advance of personalised medication will certainly benefit this group, but we do not have it yet. We need it. The anxiety can cause meltdowns and challenging behaviour. It is usually triggered by a build-up of anxiety. Of course, it is difficult to deal with, but it is not a psychotic episode. The triggers that create these meltdowns in autistic adults and children need to be understood. They will vary from person to person, from changing environments and many quite obscure changes. It takes time and experience to manage and support somebody who is having a meltdown. I know that it is not a psychiatric term as such, but I think we all understand, know and have probably witnessed what that means. Whatever the cause of a meltdown, to be met with solitary confinement will compound the anxiety driver, and too often, the use of the chemical cosh on top just puts off a repeat event until the next time. For many autistic people, just being physically touched will trigger a challenging behaviour.
In over 31 years in Parliament, I have been involved with medical practitioners in order to extricate autistic people from mental institutions, and I can certainly relate to the title of the report that is the subject of today’s debate, which begins with the words, “My heart breaks”. My heart has broken many times over some of the cases I have personally observed. One would have hoped to have seen more progress. Over the years there have been high-profile cases, but the Government have made promises that have not been kept and targets have been widely missed.
In reading the response of the DHSC to the recommendations in the report by the noble Baroness, Lady Hollins, I would like to focus the Minister’s attention on the scale of the problem. In particular, their response to recommendation 6 says:
“Solitary confinement should become a notifiable event to CQC as well as to the ICB executive lead for learning disability and autism and the provider board. The notification should be made within 72 hours of a person entering solitary confinement”.
The Government’s response to recommendation 8 mentions the CQC. Although I support the training mentioned in that response, if there were notification of such confinement straightaway, or certainly within 48 hours, the CQC would not have to play “catch me if you can” in its ad hoc investigations of and attendances at these institutions. There is an urgent need for these cases to be identified when they happen and to explain why an action is taken. There is such a need for more action that the Government have a role to play here, rather than just saying, “Well, these are independent bodies who make day-to-day decisions”. That may be true, but what is behind this report is all the recommendation the Government need to make sure that the action in the field meets what we in this House would regard as humanitarian standards for this group of people.
I conclude by quoting a briefing that many of us have had from Mencap, which has great experience in this area. It says that the Government
“promised to reduce the number of people with a learning disability and/or autism in mental health hospitals by 50% by March 2024. Our analysis of latest NHS Digital Assuring figures … estimates that the Government won’t hit their own target until 2029”.
It says that, of the 5,025 reported cases, in August 2023—just three months ago—the use of restrictive interventions in this one month included 1,140 reported uses of restrictive interventions on children. I say to my noble friend the Minister: surely, this is urgent.
(1 year, 1 month ago)
Lords ChamberYes. I am happy for the noble Lord to come to the round table and put those points himself as well.
My noble friend will be aware that autism is not a mental health condition but a communication disorder. However, of course like everybody else, people on the autistic spectrum can develop mental health problems as well. What assessment has the department made or could it make, quite urgently, of just how able and experienced psychiatrists around the country are at disaggregating between an autistic person having a meltdown and a mental health condition? If they get it wrong, as often happens, the consequences of the treatment that follows are devastating.
My noble friend is absolutely correct, and from personal experience I know the importance of getting that early diagnosis right. I am quite happy to write in detail exactly what we are doing in this space.
(1 year, 1 month ago)
Lords ChamberI thank the noble Lord for his kind words about me; I understand the situation. The Government are committed to implementing those changes and we are looking for opportunities to introduce them. I understand his disappointment that the Bill is not in the current programme of legislation. What I am committed to doing is making sure that as many features as possible from the Bill are implemented through action on the ground; the care and treatment reviews are a vital part of that today. Following the report from the noble Baroness, Lady Hollins, we are also making sure that we have regular CQC reviews over the next few years. We are delivering good action in this space, but I understand his feelings.
My Lords, like the noble Lord, Lord Touhig, I am a vice-president of the National Autistic Society. I also remind the House of my interests in the register and my family interest in this subject. The reason why a lot of autistic people become in-patients in mental health hospitals is the lack of real understanding and training of healthcare professionals in that field. It is a lot better in the big conurbations than in the countryside. Autism is not a mental health condition but, as my noble friend the Minister will know, one of the problems that the Government will face if they are to help to get people out of these institutions is that, like the rest of us, people with autism can develop mental health conditions; autistic-related anxiety is a very common one. Psychologists—one finds more of them than psychiatrists out in the community—cannot prescribe; it has to be a psychiatrist who prescribes. Until you get the right number of trained professionals out in the community—namely, psychiatrists with a specialism in autism; it is no good having just your average jobbing psychiatrist—those people are doomed to stay. I urge my noble friend to look at the levels of availability for the right professionals, to release these people from the incarceration they should never have suffered in the first place.
I and the whole House would agree with my noble friend that having the right people making the right assessments on the right place for those people to be treated is key to all this. We are rolling out training through the National Autism Trainer Programme, in which we have invested £20 million to ensure improvements in autistic diagnostic pathways and people’s capability to achieve them. We are now rolling out the Oliver McGowan training to over 1 million people and looking at rolling out stage 2. However, I agree with her that these actions are vital.
(1 year, 1 month ago)
Lords ChamberMy Lords, health and social care did not feature prominently in the gracious Speech. The mental health Bill, about which we have heard, was a much-needed reform, as was social care reform. I welcome the measures to reduce smoking, both for individuals and for the cost benefit this would bring to the NHS.
Here lies my concern. I worked in the National Health Service in the 1970s, and my family have been regular users of the NHS. Like many, we have much to be grateful for. However, we should not allow that to cloud our judgment: the NHS is not what it was; reform is needed. There are too many critical incidents across the country and in different disciplines. Only today, we heard the BMA state that NHS Wales is not fit for purpose.
It is not just health and social care that need to be integrated; within the health service itself, people work in silos. Bureaucracy rules. It saps time and resources; it affects the delivery of the all-important health service free at the point of use. I fully agree with the noble Baroness, Lady Barker, about the need to sort out the data problems. Until that is done, we will not have a fully integrated computer system within the NHS, which would almost certainly be of great benefit not just to patients but to those who work in the NHS.
Across too many disciplines, the standard of service fails. I want to emphasise just one of those services: that for the elderly at the end of life. Our generation, if I may call it that, has seen the rapid development of technology, genetics, pharmacology and, now, AI, but little is said about how we as a nation will manage the results of those advances. People will continue to live longer and the age of the retired population will be even higher than it is now. But how and where will people die? Marie Curie states today that one in four people does not receive the care they need at the end of life. With old age comes frailty, disease and loneliness. At primary care level, the lack of continuity fails older people. The “family doctor” is now just a euphemism. In hospitals, people in the final year of life have endless waits in A&E, overlong stays in noisy wards and delayed discharges.
I looked up the NICE guidance on this. NG142, on the last year of life, states:
“There are wide ranging benefits to be gained from identifying people who may be nearing the end of life … Reducing the burden of treatments that may be unnecessary and minimising the risk of inappropriate hospital admission are potential benefits to be gained from effective identification of this cohort”.
I quite agree with that, but, in practice, where do the eyes on the patient come from to identify what is a very complex and sensitive area?
On care homes, I am particularly concerned that people funded by local authorities cannot be guaranteed that they will stay in the care home to which they were originally admitted, not because there has been a significant change in their circumstances but purely because the funding does not follow the patient. Frankly, when there is just a reassessment for the purpose of moving somebody somewhere else when they are in their 80s or 90s, that is an act as predictable as smoking to kill you.
An NHS free at the point of use needs major reform. It may be the last year of this Parliament, but I really regret that the Government did not grasp this nettle. I say to my noble friend that there are solutions, particularly for people at the end of life, which will not necessarily be the most expensive things that the Treasury has ever had to contemplate. For example, a coalition of health and social care organisations is calling on the Government to tackle failings in the way that older people are cared for in their final years of life. The new Coalition of Frontline Care for People Nearing the End of Life, which includes Care England, the British Geriatrics Society and the Gold Standards Framework Centre, is calling for enhanced core training in end-of-life care for the UK’s 3 million front-line health and social care workers. It also wants a step change in health and care integration from the new integrated care boards and heightened recognition of end-of-life care by the regulator, the CQC.
While people are dying in conditions and circumstances that are very often a great burden to carers trying to do their best for them, at home particularly, we cannot honestly say that in serving this group of people the NHS that we see today is the gold standard or a national treasure. I hope that my noble friend, whether this is the final year of this Parliament or not, will take that on board and try to move things along for this group of people.
(1 year, 1 month ago)
Lords ChamberI remind the House of my personal interest: I have family members claiming ESA. I advise my noble friend the Minister that I am awaiting an appointment with DWP Ministers following Questions that I tabled before the Summer Recess about the suicide rate among disabled benefits claimants—in fact, among all benefits claimants. My concern is not only around the way the DWP collects data but around the way it sometimes does not disseminates the information that it has. Will my noble friend pause in relying totally on the way in which the DWP produces data at present? For example, I am particularly concerned about how it collects information from coroners’ courts. This is something that I think is ongoing; I hope that my noble friend regards it in that way as well.
We are definitely always looking to improve, get access to better data and learn lessons from that. I will make sure that that is understood and follow up with DWP Ministers accordingly.