Down’s Syndrome: Do Not Resuscitate Orders
Baroness Hollins Excerpts(8 years, 5 months ago)
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Lord Prior of Brampton
My Lords, the right reverend Prelate makes a number of very important points. This is a society issue as much as a medical issue. Before coming into the Chamber today I discussed with the noble Baroness, Lady Hollins, the importance of teaching students at medical school how to value people with learning difficulties, and the important role that people with learning disabilities might play by going to medical schools and directly telling medical students about their lives and concerns.
Baroness Hollins (CB)
The assumption that pregnant women who are expecting a baby with Down’s syndrome will abort that child affects public and medical attitudes. As one woman with Down’s syndrome put it when speaking at a conference on prenatal diagnosis, “You want to kill us”, which is a hard perspective for an adult with Down’s syndrome to hear. I am grateful to the Minister for picking up the point that medical nursing students need to learn from people with learning disabilities, so that their attitudes change. That familiarity with and being comfortable with people with learning disabilities will change things. Will the noble Lord commit to asking the General Medical Council, the Nursing and Midwifery Council and the Medical Schools Council to make this a priority and to teach not just knowledge and skills but practical attitudes to people with learning disabilities?
Lord Prior of Brampton
My Lords, the noble Baroness makes a profound point—that medical education and training is not just about passing exams and the technicalities of medicine but about attitudes and how you work and deal with people, particularly people such as those who suffer from learning difficulties. I will certainly do what I can to encourage medical schools and nursing schools to adopt the noble Baroness’s suggestion.
Alcohol
Baroness Hollins Excerpts(8 years, 5 months ago)
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Lord Prior of Brampton
My Lords, we have asked the London School of Hygiene and Tropical Medicine to review the impact of the responsibility deal, which it will do later in 2016. There have been, however, some benefits from it on alcohol, to which the noble Lord referred particularly. The number of units not sold as a result of it is 1.3 billion and the package labelling on alcohol products has improved substantially.
Baroness Hollins (CB)
My Lords, does the Minister agree that it would be better named the “irresponsibility deal” and that it is time for effective policies to be introduced, including a minimum unit price; zero tolerance for drinking and driving; and clear and unequivocal advice for pregnant women not to drink?
Access to Palliative Care Bill [HL]
Baroness Hollins Excerpts(8 years, 6 months ago)
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Baroness Hollins (CB)
My Lords, I congratulate my noble friend on introducing this very important and timely Bill.
I will speak mainly about mental health and well-being for people who are terminally ill. To achieve a comfortable death, it is imperative that psychological distress is understood and attended to as well as treating any physical symptoms. Parity of esteem for physical and mental disorders was mandated in law for the first time in the Health and Social Care Act 2012 and it applies at the end of life, too. Depression, which can be defined as pervasive low mood lasting more than two weeks, is a common co-morbid condition of pain and advanced illness. A systematic review of the evidence in 2006 found that up to 80% of people with cancer experienced clinically diagnosable depression, as did up to 70% of people with chronic lung disease. A considerable proportion of such mental illness remains undiagnosed and untreated, thus pointing to the need for an integrated psychiatric service in hospice and palliative care teams. Another study published in 2014 found that out of 444 advanced cancer patients in the study, 160 patients reported moderate or severe depression, often linked to anxiety. Of these 160 people, 56% showed a significant improvement in their anxiety or depression after just one supportive palliative care consultation.
Three barriers to excellent psychiatric care at the end of life have been described by the Academy of Psychosomatic Medicine: first, the challenge of diagnosing mental disorders in the presence of serious physical illness; secondly, confusion about the threshold of clinical significance—when is distress part of a process of normal psychological adjustment and when is it pathological?—and thirdly, the commonplace but unnecessary nihilism about the potential benefit of treatment for mental disorders at the end of life.
I suggest that psychiatric teams with a specialist understanding of mental health in palliative care have a crucial role to play in the provision of truly holistic end-of-life support. Research points to stigma as a barrier to diagnosing depression. One paper reported that,
“patients were ashamed to admit to psychological symptoms of depression because of their fear about the stigma attached to it”.
Stigma leads to both a reluctance by individual patients to seek help and a reluctance by healthcare professionals even to broach the subject. It will be through effective training in communication and in diagnosing mental illness that these barriers will be broken down, and psychiatrists need to be involved in supervision and reflective practice with the multidisciplinary team.
The Oxford Handbook of Psychiatry in Palliative Medicine, published in 2009, described the multifactorial function of the psychiatrist: first, as a clinical consultant contributing to direct patient care, liaising with other palliative care clinicians and working with families; secondly, as an educator to leverage knowledge about mental health issues and teach communication skills when difficult dynamics are involved; and, thirdly, as an investigator undertaking and supervising research about what works best at the end of life.
My noble friend’s Bill explicitly includes a clause specifying that Health Education England should ensure that health and social care providers deliver good- quality training to all healthcare professionals in four specified fields related to palliative care: pain control; communication skills; the appropriate use of the Mental Capacity Act; and how to support families and carers of people with palliative care needs. I would ask my noble friend if the Bill’s provisions adequately include a mandate for training in mental health and for the provision of specialist mental health care, and whether her intention would be to emphasise the importance of parity for mental and physical health care in guidance.
The Bill is not just about care for the dying person. The legacy of a traumatic death can have lifelong negative repercussions for those left behind. The Childhood Bereavement Network estimates that around 33,000 children under 18 are newly bereaved every year. Being open about death and allowing them to understand what is happening can reduce otherwise negative sequelae. My own research with Dr Abdelnoor found that, compared with their peers, parentally bereaved children scored an average of half a grade lower in their GCSEs. Other researchers found that bereaved children are one and a half times as likely to have a mental disorder and three times more likely to have physical health symptoms in the clinical range.
As I said in this House yesterday, access to palliative care services does not require just geographical equity but equal access for all individuals in our society. People with learning disabilities, children and individuals with severe mental illness may all need reasonable adjustments to be made to their care and treatment. My research with people with learning disabilities has shown that collaboration between services is the most effective way to ensure that they receive satisfactory palliative care. The problem is not people’s inability to communicate but our inability to understand their way of communicating. We know that in general health services, people with learning disabilities die earlier than they should and face disproportionate barriers to care. Unsurprisingly, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities found problems in advance-care planning, poor adherence to the Mental Capacity Act, and carers not feeling listened to. These areas are also identified in the Bill as needing improvement in end-of-life care. If we could get it right for people with learning disabilities, we would probably get it right for everyone.
I was grateful to the Minister for his response to yesterday’s Question for Short Debate in the name of the noble Lord, Lord Farmer, and his announcement of the planned thematic review by the CQC of inequalities in end-of-life care. Such initiatives will help improve services but legislation is needed to make a significant step change in the availability of adequate palliative care services. I support the Bill wholeheartedly.
Palliative Care
Baroness Hollins Excerpts(8 years, 6 months ago)
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Baroness Hollins (CB)
My Lords, end of life care must encompass body, mind and spirit. Minimising suffering in the final days, weeks and months of life once a cure is no longer possible is not just a medical task, it is also the chance to support each person to let go of life and experience a sense of completion, which may require support with physical, psychological, cultural and/or spiritual concerns.
If a palliative care service is to be available in every kind of healthcare setting seven days a week, there will need to be changes to the current system. Continuity of support will also be an important ingredient in the recipe, just as it is in the support needed at the beginning of life. In birth and in death, there is a comfort that comes with knowing that the person who is caring for you knows what is important to you. The Liverpool care pathway was an attempt to standardise and improve end of life care. The intention was good but, as we have seen time and time again both inside and outside medicine, where initiatives are not funded properly and are without sufficient training and supervision, protocol-based practice becomes a tick-box exercise and stifles creative thinking. End of life care needs to be flexible and creative. It is about responding to the needs of an individual. Some of those needs will be unexpected, requiring access to 24-hour support, be that telephone advice or access to a doctor or nurse.
There is no doubt in my mind that accessible and equitable palliative care services are required across England, just like other services that are fully NHS-funded. This morning I received some advertising material in the post from Macmillan. It made the point that in the south-east of England, it has only enough nurses to help around 25% of people with cancer. It is raising charitable money to subsidise the care provided for people with cancer at the end of their life.
Wales is a trailblazer and is already providing seven-day specialist care services, but it is critical that geographical equity also translates into equal access for all individuals in our society, not just for those who are better informed or who can shout the loudest. People with learning disabilities, children, individuals with severe mental illness and all those who do not at first come to mind when thinking about someone who is dying need to be explicitly considered. I was teaching some GPs in a hospice, one of whom said, “But people with learning disabilities don’t get cancer, do they?”. There is still quite a lot of ignorance, as the Minister is well aware, and the needs of some people in society are overlooked. Will he reassure us that the needs of these groups will also be taken into account in any new health policy about end of life care?
Health: Children and Young People
Baroness Hollins Excerpts(8 years, 10 months ago)
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Baroness Hollins
To ask Her Majesty’s Government what steps they are taking to safeguard the physical and mental health of children and young people.
Baroness Hollins (CB)
My Lords, this is the first debate that I have spoken in with the noble Lord, Lord Prior, and I welcome him, rather belatedly. I refer to my interests in the register. I am also grateful to other noble Lords for agreeing to speak in this debate, given the lateness of its timetabling only last Thursday.
I begin by reminding noble Lords that most factors that influence child and adolescent physical and mental health lie outside the health sector and that a preventive approach is essential to secure the best outcomes. Health outcomes, social achievement and resilience in adult life are largely set during the developmental period: in the first 18 years of life and particularly in the first 1,001 critical days from conception to age two. Even before conception, maternal behaviour can have long-term consequences for a child’s health and well-being. I am thinking here, for example, of foetal alcohol syndrome, which is the leading preventable cause of disability in children, and the need for women to be better informed and to discontinue drinking alcohol before conception. At the moment, government advice on the matter of alcohol in pregnancy is less than clear.
I would like assurances from the Minister about three key issues, which interweave with the other issues that I will go on to discuss. First, will the Minister assure the House that the Government intend to improve the collection of outcome data, including a child-led outcomes framework such as that requested by the Coram Foundation? This would enable us to better understand the scale of the problem, to plan services and to monitor progress. It would also allow children, young people and carers to express the outcomes that matter to them, because they are the recipients of care.
Secondly, will the Minister commit to focusing on preventive measures in all policy relating to children and young people? This should be targeted both at high-risk individuals and families and at a public health level, because this matters to all children and young people.
Thirdly, will the Government invest in early intervention systems and strategies in both physical and mental health? When things start to go wrong, there is less distance to travel back to wellness and health than once a chronic condition has set in. We see this all too frequently in child and adolescent mental health services—CAMHS—and with childhood obesity.
The BMA has called on the UK Government to adopt a “health in all policies” approach, whereby health is incorporated into all their decision-making areas. I ask for this to always include a particular focus on the 25% of the population who are children and young people, even where a policy may, on the surface, seem to relate only to adults. The BMA has highlighted that austerity measures and welfare reform disproportionately affect families and children. Disabled children feel the effects even more. Is it not time that the impact of austerity and funding cuts on the availability of children’s health services should be objectively monitored?
We know that childhood poverty has a significant negative impact on children’s longer-term mental and physical health life path. We also know that at least half of all mental illness starts by the age of 14 and probably more than three-quarters by the age of 24. The total economic and social cost of mental health problems in England alone is estimated to be £105 billion, and mental health problems are the leading cause of sickness absence in the UK. With such a clear link, it seems unfathomable that 3.5 million children live in poverty in the UK, according to Barnardo’s.
The BMA Board of Science report, Growing Up in the UK, published two years ago, advocated a life-course approach to child health where health and well-being are integrated on a continuum. As I said, this begins prior to conception, by ensuring the optimum health for the mother, and runs through to adolescence. The report made a wide range of recommendations that remain relevant, including that there should be an annual report on the health of the nation’s children with accountability at ministerial level for children’s health and well-being. Are the Government planning to develop a national children and young people’s health strategy, as recommended even more recently in the 2014-15 report of the Children and Young People’s Health Outcomes Forum? I should express a little disappointment that the Five Year Forward View hardly mentions children in any of the areas identified as a priority.
Secondly, the BMA report stressed that children’s services should be family centred, with a focus on the importance of parenting and treating the child and family as a unit. The Department of Health’s own report, Future in Mind, advised evidence-based programmes of intervention and support to strengthen attachment between parent and child, avoid trauma, build resilience and improve behaviour. I am pleased that there is increasing recognition from Government on this issue of early years intervention. The cross-party manifesto The 1001 Critical Days places an emphasis on pre-conception until the second birthday as a period to dramatically improve outcomes in childhood. I hope the Minister will support its recommendations.
Prevention is always better than cure, but it also worth noting that infants, children and young people regularly use NHS services and account for about two-fifths of a typical GP’s workload. I will use mental health and obesity as two examples where early intervention should be prioritised once things start to go wrong.
Parity of esteem with respect to mental and physical health should be aimed for with children and adolescents just as much as with adults. Remember, there is no health without mental health and separating the two just does not work and is not cost effective. Considerable investment in child and adolescent mental health services will be needed to ensure sufficient specialist counsellors are available locally. Freedom of information requests by the charity Young Minds found that more than half of councils in England cut or froze budgets for CAMHS between 2010 and 2015. That had a detrimental effect on the early intervention and prevention capacity of child and adolescent mental health services. Cutting their budgets means that the threshold for treatment has become much higher and many CAMHS must now concentrate on acute crises in adolescents and have little capacity for family interventions with younger children with severe emotional and behavioural disturbance. That goes against all the advice coming from the professional bodies and the Department of Health.
Despite having one of the most advanced health systems in the world, child physical health outcomes in the UK are among the poorest in western Europe. If we compare ourselves with Sweden, the country with the lowest mortality for children and young people after controlling for population size among other variables, we find in the UK that every day five children under the age of 14 die who would not die in Sweden. That equates to the alarming figure of 132,874 person years of life lost each year in the UK, the majority of which would be as healthy adults contributing to the country’s social and economic strength.
Childhood obesity is another key area where preventive work in physical health needs to take priority, as it also causes diabetes and heart disease. The BMA and the Royal College of Paediatrics and Child Health have expressed serious concern about the rapid rise in rates of obesity. A new BMA report to be called “Food for Thought: Promoting Healthy Diets among Children and Young People” will be published later this month. The report will call for the appointment by government of one person to drive a co-ordinated obesity prevention strategy. I urge the Minister to give serious consideration to widely supported recommendations that a strong regulatory framework should be central to the approach to reducing the burden of diet-related ill-health in the UK.
The Prime Minister publicly expressed his concerns over the commercialisation of childhood and commissioned the Mothers’ Union to report on it. The report by Reg Bailey Bye Buy Childhood generated considerable media coverage, with many commentators expressing serious concern over the targeting of children for commercial benefit. Children and young people, as well as adults with learning disabilities, are particularly exposed and vulnerable to a range of food and drink marketing tactics.
While there have been some notable improvements in measured health outcomes for children and young people over recent years, the evidence is telling us that the rate of improvement is slower than it should be. The infrastructure for the delivery of clinical research in the UK is unparalleled internationally. However, the RCPCH report Turning the Tide identifies a continuing imbalance between research that targets adults and research that addresses the needs of infants, children and young people and calls for an increase in the number of child health research posts in the UK and a designated fund for child health research which must address mental and physical health.
Safeguarding has two meanings in this debate, one being the need to safeguard health outcomes, but it would be strange for me not to mention child protection concerns. So many children in the UK have been sexually abused. It is shocking that the scale of child abuse of all forms led to the need for the introduction of the Modern Slavery Act 2015. This issue requires a debate all of its own to cover it adequately, but given the Prime Minister’s launch of a child protection task force, will the Minister commit to commissioning and introducing a standardised, compulsory multiprofessional safeguarding training programme for all professionals working with children and families across health and social care? This would need to have a centralised government point of accountability to prevent the fragmentation of responsibility caused by mandated responsibility written into the Modern Slavery Act 2015.
In closing, I will summarise my key areas of concern: outcome data relevant to children and young people are needed to allow us to assess the scale of the problem and track progress; preventive measures, beginning before conception, are needed in all policy decisions that affect children and young people, regardless of government department; and we need a commitment to early intervention strategies where there is evidence things are going wrong. While healthcare professionals clearly have a key role to play in improving child health, it also requires political will and leadership. With concerted action from government, we could make health outcomes for children and young people comparable to the best in the world.
Health: Deprivation of Liberty Safeguards
Baroness Hollins Excerpts(9 years, 2 months ago)
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Baroness Hollins (CB)
My Lords, I should like to reflect on how we have reached this point by looking briefly at two cases. First is the 1997 Bournewood case, which is why we have the deprivation of liberty safeguards in the first place.
Henry—we do not know his real name—is a man with severe autism and learning disability. He cannot communicate verbally but can make his needs known to those who know him. As with most people with autism, structure, routine and predictability are very important to him. However, on the day in question, he did not have his usual driver for his day centre visit. The driver went a different route, picked up different people, and Henry became increasingly upset. By the time he reached the day centre, he was frustrated and angry, was harming himself and hitting out at other people. The day centre staff therefore rang for specialist advice and were advised to admit him to hospital immediately, where he was detained for his own safety. When his foster parents visited him, he became upset and wanted to go home with them. However, this increased his harmful behaviour and the doctor asked them not to visit any more, saying that it was in his best interests not to see them. They started a legal campaign and, after five months, Henry went home. They then took the case to court, arguing that he had been illegally detained. Eventually, after seven years and hundreds of thousands of pounds in costs, the European Court of Human Rights ruled that Henry had been illegally deprived of his liberty, in contravention of Article 5 of the European Convention on Human Rights—and so the Mental Capacity Act and DoLS were born.
Currently, if a person without capacity does not meet the criteria to be admitted to hospital under the provisions of the Mental Health Act, an application for a DoLS authorisation may be made. In fact, Henry’s psychiatrist said that she could have detained him under the Mental Health Act and, paradoxically, he would not therefore have been eligible for DoLS.
Let us compare Henry’s story to the case of Stephen Neary. He, too, has autism and a learning disability, although he is able to communicate verbally. He lived at home with his father and had constant adult supervision. However, his father became unwell and exhausted and, in 2009, agreed to Stephen being admitted temporarily for respite. When he went to fetch his son he was prevented from doing so. The professionals argued that they had concerns about Stephen’s weight and behaviour, and he was detained under DoLS. For a year Mr Neary fought a legal battle to get his son home. Neither he nor his son were eligible for legal aid but fortunately Mr Neary was able to do this. There was no automatic tribunal, no means of legal challenge other than through the High Court and ultimately damages were paid because it was found that the council had not acted lawfully in depriving Stephen Neary of his liberty.
The post-legislative scrutiny committee of which I was a member found the Mental Capacity Act unfit for purpose with respect to DoLS. The code of practice has not been updated since it was first published and does not take into account significant changes resulting from case law, including the Supreme Court’s March 2014 judgment. Since the Cheshire West case many more people are being referred and the system is completely clogged up. In one authority 2,000 cases are awaiting standard authorisations—a year on from the judgment and no safeguards in place. The legal framework is complex, expensive and confusing for clinicians, who may fear that they are not up to date with the latest case law. The BMA told the Select Committee that its concern with the DoLS is its complexity and bureaucracy.
Does the Minister agree that simplifying and streamlining the safeguarding arrangements are a matter of urgency? They must, however, be considered alongside the service redesign taking place in the care of people with learning disability and challenging behaviour. The Government are trying to increase the speed of discharges but because of inadequate community support these delayed authorisations are quite literally causing paralysis in the system. I agree with the suggestion from my noble friend Lady Finlay that perhaps further case law is needed to clarify the situation.
Health and Social Care (Safety and Quality) Bill
Baroness Hollins Excerpts(9 years, 2 months ago)
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Baroness Finlay of Llandaff
My Lords, first, I apologise to the House for not declaring my interest as president of the BMA at the opening of this debate, given that the BMA has briefed about problems with the Bill.
My Amendment 5 focuses on the word “best” in the term “best interests”. I have had a concern about this because of the way “best interests” is now used. I have looked back, thanks to help from the Library, at 147 pieces of legislation in which the term “best interests” has been used. If one looks at those that came after 2005, when the Mental Capacity Act was passed, it is notable that that term has been included when it concerns the best interests of children, young carers, safeguarding, protection of those who lack capacity, or with regard to organisations such as charities—but not with regard to adults, who would be considered to have capacity as individuals. The term is also used in connection with the storage of gametes and the provision of local services and pension funds, which must act out of the collective best interest of people with whom the legislation is concerned.
I have also understood—I stand to be corrected—that in legislation the most recent use of a term supersedes all preceding use of that terminology in legislation. Therefore, the Mental Capacity Act should be the Act we look to. However, here we have a specific decision to be made in the so-called best interests of an individual, who can be assumed to have capacity, about the decision over their data, and that decision is being made by another person. My concern is that we are legislating for one person, the health or adult social care commissioner or provider, to decide that inclusion of the NHS number as a consistent identifier is, or is not, in the individual’s best interest, even though the individual with capacity may, if consulted, feel very differently. My concern is because there are quite serious implications about not including the NHS individual identifier.
I turn to the principle of best interests. For years we have tried to make sure that that term was used properly in both health and social care. We had a very interesting debate earlier this week on the post-legislative scrutiny of the Mental Capacity Act. Strenuous efforts have been made to roll out empowerment of individuals to enhance capacity and not to take paternalistic decisions of one person over another. Indeed, I have been involved in trying to teach the principles of the Mental Capacity Act, and I am fearful that this wording—as in this piece of legislation—could be seen to undermine the laudable intentions of that Act in terms of empowering individuals to take decisions.
I turn to Amendment 6 and how the NHS function of the unique identifier is important. In our society, we have several different identifying numbers—national insurance numbers, bank account numbers, passport numbers and so on. The national insurance and passport numbers are held from within the province of government. Perhaps it would be more honest to state that, if you do not wish your NHS unique identifier to be available to be available to you, you have effectively signed yourself out of NHS services.
Indeed, I am grateful for a briefing that I have only just received this morning, which points out—if I have understood it correctly—that opting out of the use of the NHS identifier opts you out of systems such as “choose and book”, screening programmes and so on. So effectively you are in part removing yourself from services that are available as a public health measure, as well as services that would be available to you as a patient. I wonder whether we should state clearly that the onus is only on you as the individual to explain why you wish such a number to be excluded, perhaps because you are a public figure and wish to use an alias—or should we begin to think about whether there should be the occasional possibility for people to have two numbers to use in different situations, rather as you can, in exceptional circumstances, hold two passports?
The NHS number makes links across the whole system of pathways of care. Indeed, it is there to reduce risk. For example, if you have two patients with a similar name who are going for surgery, the NHS number will be used as a checklist identifier to make sure that the right patient of that name is taken down for surgery. We are all aware that, when patients are in hospital and frightened and feel disempowered, they are less likely to challenge the processes that are happening to them than when they are fit and well.
Another problem concerns me. What about the person who is coerced or pressurised into withholding their NHS number because somebody is badly intentioned or abusive towards them and does not wish that abuse to be revealed? A person may appear in different parts of the healthcare system but, without that NHS identifier number, the dots cannot be joined up to protect them or to detect that there is a problem.
I seek confirmation in summing up from the Minister that I am correct in understanding that, if you decide not to use your NHS number, you are opting out of things such as screening programmes, as well as having to present your NHS number to be able to opt out of systems such as care.data, and so on. At the moment, if you opt out of care.data, you are opting out of screening programmes as well.
Another problem for the NHS is that hospital episode statistics rely on the NHS number, which is effectively how the hospital is paid. If there is no number, the only identifier that the hospital has is your name and address, which is a far greater threat to privacy in the system than is the NHS number.
With those comments, I await the Minister’s response to the questions I have posed. I emphasise again that I have real concern about how the term “best interests” is being used. I seek clear clarification in his answer so that we can have clarity on the record about how the term is used in the context of the Bill.
Baroness Hollins (CB)
My Lords, Amendment 7 in my name focuses on the proposed duty in Clause 3 to share information between health professionals and social care professionals. I apologise that I was out of the country during Second Reading and was unable to speak. I congratulate the noble Lord, Lord Ribeiro, for championing the Bill through the House. I also thank the noble Lord, Lord Hunt, for supporting this amendment, together with the noble Lord, Lord Low, who unfortunately cannot attend today.
From my own research and the work of the confidential inquiry into the premature deaths of people with a learning disability, I know that there are some appalling patient safety outcomes for people with learning disabilities, where improved information sharing has a real prospect of helping. Data scaled up from the confidential inquiry show that 1,200 people with a learning disability die avoidably in NHS care every year. In many cases this is due to poor or inadequate care or diagnostic overshadowing, where, put simply, professionals fail to see past the learning disability to what is really affecting the patient, may not recognise that the person has a learning disability, or may have had no training on what a learning disability is.
Jimmy Savile: NHS Investigations
Baroness Hollins Excerpts(9 years, 2 months ago)
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Earl Howe
I take my noble friend’s point. However, I would hesitate before committing to a situation where, in every instance that a doctor or nurse examined a patient, they had to have somebody with them. In the real world, I do not think that is going to be practical. What one should have, however, is an assurance that whoever examines the patient, or performs some intimate caring service with the patient, should have been checked for both a criminal record and a previous employment history. I will take my noble friend’s point away, but I think that what I have said would be accepted by those in the National Health Service as the only practical way forward.
Baroness Hollins (CB)
My Lords, senior hospital administrators were criticised in these reports, but senior civil servants were also responsible for facilitating Savile’s influence and access to Broadmoor and Stoke Mandeville hospitals. Have the civil servants been identified? How have they been held accountable? Have the survivors received an individual apology for the governance failures that allowed this catalogue of abuse to take place? I understand the Secretary of State’s general apology, but I think an individual apology would be appropriate for each and every survivor.
Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015
Baroness Hollins Excerpts(9 years, 2 months ago)
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Baroness Hollins (CB)
My Lords, I take a rather different view from some of my eminent medical colleagues. I have worked for over 30 years with families of severely disabled children. As a psychiatrist—and as the mother myself of a child born with a severe developmental disability—my heart goes out to those parents facing the prospect of inherited mitochondrial disorders. As a mother, I understand what is called the moral imperative to try to help. However, our first responsibility must be to the children who may be created through these proposed interventions: the most important moral imperative must be to do no harm.
A new technology of such potential importance must take as long as is needed to be as sure as possible of its safety. Being first is not always best. I have carefully read the HFEA 2014 review of scientific methods. It has been implied that the scientific reviews have not raised any concerns, but in paragraph 3.7.25 the review states,
“although the results with the two techniques continue to be promising, further experiments need to be carried out before introducing either into clinical practice to provide further reassurance about efficiency and safety”.
I asked a Written Question in December asking whether clinical trials were being planned and I am grateful for the helpful reply from the Minister and the mention he made of it in his opening remarks—although I disagree with his interpretation of medicine, which is defined much more broadly in the European directive. The Minister also explained that,
“for any new IVF technique there will need to be careful monitoring of the procedure and, subsequently, any pregnancies”.
But we are not talking about pregnancies primarily; this is me as the psychiatrist talking now. As the noble Lord, Lord Deben, pointed out, we are talking about children—children who will, we hope, grow up to be healthy human beings, and who will themselves be able to have healthy children. But what if they do not?
In paragraph 3.7.29 the HFEA expert panel said:
“Until knowledge has built up that suggests otherwise, the panel recommends that any female born following MST or PNT”—
maternal spindle transfer or pronuclear transfer—
“should be advised, when old enough, that she may herself be at risk of having a child with a significant level of mutant mtDNA, putting her child, and if female, subsequent generations at risk of mitochondrial disease”.
The science is complicated, but there is apparently a real possibility that resulting embryos from a woman born after MST or PNT could be heteroplasmic—
Lord Patel
May I ask the noble Baroness what experiments she would propose to determine that the children born through this procedure will be healthy in every way, including reproduction-wise?
Baroness Hollins
My Lords, I do not think that intervention is very helpful as it is not relevant to the point I am making. The issue of heteroplasmy was spoken about earlier, and it simply means two or more different mitochondrial DNA types coexisting in a single cell. The review panel concluded:
“These levels may still not be sufficient to cause her children to have a problem, but subsequent generations could be affected”.
In paragraph 4.3 the panel stresses that,
“it should be accepted that there will always be some risk and unknowns associated with the use of MST or PMT in humans until it is tried in practice”.
I understand that and agree with it.
One argument for agreeing the recommendations now is to enable the HFEA to license these techniques as soon as it is convinced that there is sufficient evidence of safety without then having to seek parliamentary approval, thus possibly delaying implementation. In 2008, Dr Evan Harris, the former Member for Oxford West and Abingdon, a champion of the 2008 Act, said:
“Safety is clearly a concern… If Parliament decides that it is not safe enough to allow the HFEA to consider licensing something, Parliament would not draft, confirm or pass the regulations”.—[Official Report, Commons, Human Fertilisation and Embryology Bill Committee, 3/6/08; col. 35.]
Agreeing the recommendations now seems to be putting the chicken before the egg. Supporters of the techniques—
Viscount Ridley
The noble Baroness made the point that heteroplasmy, and therefore the carryover of the diseased mitochondria, is possible under this technique. Does she agree that experiments show that the likelihood is less than 5%, whereas pre-implantation genetic diagnosis has it at up to 40%? That is a legal procedure, so we are talking about trying to legalise a safer procedure than something that is currently legal.
Baroness Hollins
Again, I do not think that is the point that I am trying to make. Maybe I am not being quite clear enough.
Lord Tebbit (Con)
Would the noble Baroness not agree that there is only one absolutely safe way to ensure that this disease is not handed down from generation to generation, and that is for those women who are carriers of the genetic fault not to have children? That may be an appalling thing for me to have said, many people would think, but there are many people who for various reasons cannot have children.
Baroness Hollins
That is a good point.
Supporters of the techniques simplify the impact of these proposed procedures by saying that mitochondrial donation is like changing a battery. Their argument runs that mitochondrial DNA relates only to power production in the cell but does not affect the DNA, which encodes our characteristics, and therefore that exchanging mitochondria should not be seen as ethically significant. In a debate last September, the honourable Member for Havant in another place summed up this position well when he said that the techniques represented,
“a change in the membrane of the cell so that the battery function continues, but it does not affect human identity even by 0.1%. That is why I do not believe that there is an issue of dignity or integrity of the individual”.—[Official Report, Commons, 1/7/14; col. 98.]
The Government underlined how important this point was to their policy in their consultation response when they said:
“Most importantly, mitochondrial donation techniques do not alter personal characteristics and traits”,
of the person, the implication being that if this technology were to affect personal characteristics then the Government would withdraw their support.
So the ethics and the safety of the science are inextricably linked. Unfortunately, it seems that we are still at the beginning of understanding the complex interactions between mitochondrial and nuclear DNA. Some recent empirical studies on animals have suggested that mitochondria indeed affect characteristics, and that there is a relationship between mitochondria and memory, temperament and behaviour. As a psychiatrist, I see temperament as a personal characteristic, and I think it was for that reason that the New Scientist withdrew its support for the techniques. In an editorial last year it said that,
“we may have seriously underestimated the influence that mitochondria have. Recent research suggests that they play a key role in some of the most important features of human life”.
I note that the Government’s own consultation document acknowledged the diversity of problems associated with mitochondrial disease, including learning disabilities, neurological problems, autonomic dysfunction and dementia, and that every person’s symptoms are different. The Government’s response to the consultation concluded that they do not alter personal characteristics. One problem that I have with the current proposals is the idea that mitochondria are mere batteries, which is what has been quoted in so many of the papers that have been circulated to Peers. The New Scientist leader comment in September last year said that most debate around the issue had worked on the assumption that mitochondria were simply cellular powerhouses. However, given their newfound influence over our bodies, the implications of this technology may be far more radical than we have assumed. The leader made the point that it seems that mitochondria, far from being passive power plants, influence some of the most important aspects of human life, from memory and ageing to combating stress and disease. They even have influence over the DNA in your cell nuclei and change and evolve during your lifetime.
I have been inundated by emails, as I am sure we all have, from people who are concerned. I had an email from a cell biologist working in California, Professor Paul Knoepfler, who contributed to the HFEA’s call for evidence. He said that,
“mitochondrial transfer might be proven safe, but then again it might not. From my perspective as an impartial (scientific) observer … putting myself at some risk by publicly opposing this technology … its approval at this time would be a … risky gamble with children’s health and lives”.
He says that many scientists have told him that privately they share his concern.
I have one question for the Minister: would he withdraw his support for the regulations if he thought that the role of mitochondria was more than mere power production? Would he then support the amendment of the noble Lord, Lord Deben, for further consideration of this matter?
Until recently, the Wellcome Trust had on its website a statement suggesting that the procedure would be able to go ahead in late 2014, when the science was ready. But is the science ready? I am not quite convinced yet. As noble Lords may be aware, I chair the BMA board of science, which has not yet discussed this matter. I have discussed my support for the noble Lord’s amendments with senior officers of the BMA, and perhaps I may clarify the BMA’s position. Its support for the principle of such reproductive technologies has been expressed as an ethical principle to allow the cautious exploration and development of such technologies. I have concerns about the timing of these regulations, and for that reason I welcome the opportunity to debate them presented by the noble Lord, Lord Deben.
Lord Ribeiro (Con)
My Lords, we have heard from legal and medical experts. I am happy to say that I am not an academic and I know very little about the subject. However, it strikes me that if we look at the practicalities from the point of view of the parents who are afflicted by this condition, and we turn back to 1978 when baby Louise Brown was born as a result of the in vitro fertilisation undertaken by Steptoe and Edwards—
Mental Health Services: Sign Language Users
Baroness Hollins Excerpts(9 years, 3 months ago)
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Baroness Hollins (CB)
My Lords, I would like to add a couple of points to the debate from my experience as a psychiatrist. We have heard that deaf people continue to face unacceptable inequities in access to mental health services, and that is particularly the case for the estimated 25,000 deaf people in the UK who use British Sign Language as their first or only language. Deaf BSL users from black and minority ethnic communities, or who have additional needs arising from co-morbid visual impairment or intellectual disability, encounter even greater obstacles to accessing mental health services.
We have heard that deaf children are more likely to experience emotional, physical or sexual abuse, which contributes to later mental health problems. Deaf adults are much less likely to know how to report suspicions of abuse. Thus, children living in deaf communities are more likely to have their experience of abuse go unnoticed and unreported. The community interest company, Books Beyond Words, which I chair, has been commissioned by the NSPCC to help it develop pictorial resources to improve the reporting of such abuse to organisations such as the NSPCC.
We have heard that many deaf people leave GP consultations with no understanding of what went on, and consequently avoid going to see their GP altogether. Research has shown that a shocking one in seven people with hearing loss has missed a healthcare appointment because they did not hear their name being called in the waiting room. Those access problems continue despite the Disability Discrimination Act’s requirement for reasonable adjustments to be made, and they are compounded by a lack of deaf awareness training for professionals working in healthcare settings.
Within mainstream mental health services, few staff possess the BSL skills and experience needed to work effectively with deaf BSL users. Mental health services frequently fail to arrange for BSL interpreters to be present at appointments, often relying on family members, including children, to act as informal interpreters. That practice is unjustifiable, particularly in mental health services, where sensitive and personal issues, sometimes including abuse, may be disclosed. There is also an ongoing shortage of BSL interpreters in healthcare settings and a lack of specialist training for those who wish to work with people with mental health needs. What steps will the Government take to increase the number of BSL interpreters within mental health services?
The Sign Health charity highlights that over the past three years, it has trained 18 deaf and three hearing BSL users to work as psychological well-being practitioners in several geographic regions, but only seven are currently employed, reflecting a lack of recognition of the need for their services. Does the Minister agree that such provision would constitute a reasonable adjustment, and can he assure the House that action will be taken to improve deaf people’s access to IAPT services provided by therapists sufficiently fluent in BSL?
Deaf people are also overrepresented in secure mental health settings, and are thought to be overrepresented in the prison population, which may reflect a prior failure to address their mental health needs. It suggests the need for specialist prison in-reach services, so that deaf people with mental health needs can be identified and supported.
I highlight the importance of addressing the social determinants of mental well-being in deaf people. The exclusion, isolation and barriers that deaf people experience in education, employment and the community can negatively impact on their social and emotional well-being, along with their education and employment outcomes, thus perpetuating the cycle of adversity which puts them at greater risk of mental health difficulties. Can the Minister assure the House that recommendations to address those factors will be included in the Government’s forthcoming action plan on hearing loss?
A couple of examples were given to me by a psychiatrist working in one of the national deaf mental health services of children who he visited in mainstream schools. One child was using only BSL in a mainstream school where nobody else knows BSL. A young person in a special school whose only language was BSL was in a class with seven young people with learning disabilities, none of whom was deaf or knew BSL. That is clearly unacceptable. I look forward to the Minister’s response and thank the noble Lord, Lord Ponsonby, for raising these important matters.