Learning Disabilities: Transforming Care
Baroness Hollins Excerpts(9 years, 7 months ago)
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Baroness Hollins
To ask Her Majesty’s Government what progress has been made by the Transforming Care programme in supporting people with learning disabilities to leave in-patient settings and live with enhanced support in the community.
Baroness Hollins (CB)
My Lords, I beg leave to ask the Question standing in my name on the Order Paper and to draw attention to my interests in the register.
The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con)
My Lords, the data show a small but sustained reduction in in-patient numbers over the last year. Some 2,565 patients were recorded in hospital at the end of April 2016, compared with 2,800 at the end of March 2015. Forty-eight local transforming care partnerships have mobilised to deliver the three-year service transformation detailed in Building the Right Support, which was published in October 2015, with a national ambition of closing 35% to 50% of in-patient capacity and building community-based support.
Baroness Hollins
My Lords, I thank the Minister for his reply. Does he agree that this programme will succeed only if robust community support helps people to live in their own homes and prevents new admissions? Is the Minister confident that enough money is being provided to local areas to develop and commission the right support and services, as outlined in the NHS England service model, in particular to develop a trained and supervised social care workforce, which is currently seriously underdeveloped?
Health: Alcohol
Baroness Hollins Excerpts(9 years, 8 months ago)
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Lord Prior of Brampton
My Lords, the new guidelines published by the CMO are very clear about how much alcohol should be drunk and the implications it has for health. I do not know whether the noble Lord has been on to the One You website or has downloaded the drink tracker app. The information is out there. A campaign is being conducted by Public Health England, and we are making some progress.
Baroness Hollins (CB)
My Lords, does the Minister agree that introducing the evidence-based minimum unit price for alcohol would send a strong message from the Government about their concerns about the health dangers of alcohol? I should draw the attention of the House to my interests shown in the register.
Lord Prior of Brampton
Public Health England is conducting an evidence review of the harm done by alcohol, and minimum unit pricing will be an aspect that is addressed. To express a personal view, if we are going to address alcohol consumption by increasing the price, is it best that the benefit of that should go to the drinks companies through charging higher prices, or is it better that it should go to the Government through taxation? That is a question that the House might want to ponder.
NHS: Mental Health Services
Baroness Hollins Excerpts(9 years, 10 months ago)
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Lord Prior of Brampton
My Lords, I can give the noble Lord the assurance he wants. There are no plans to change the way in which funding for the training of psychotherapists is done at the moment.
Baroness Hollins (CB)
My Lords, given that people with learning disabilities and autism are at high risk of mental health problems, what specific support, and clarification of that support, will the Government commit to giving to address their needs?
Lord Prior of Brampton
My Lords, our strategy for this area was set out in Transforming Care, a paper produced by NHS England some six weeks ago. It shows that we are absolutely committed to treating more and more of these people outside institutional settings and back in the community.
National Health Service: In-Patients with Learning Disabilities
Baroness Hollins Excerpts(10 years ago)
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Lord Prior of Brampton
My Lords, this is a very important question. The fact that so many people with learning difficulties die much younger than people without them is of concern to everybody in this House. The review being conducted by Sir Bruce Keogh, to which the noble Lord referred, is a self-assessment tool. It is due to report quickly—by April—so is a short-term attempt to get the bottom of this. It is not a long-term effort, which would be much more comprehensive. We have two forms of looking at avoidable or excess deaths. One is the standardised system, which is a statistical basis for looking at the number of excess deaths. The other looks at avoidable deaths and is done by looking comprehensively at a wide sample of case reviews to give us a much more accurate picture of what is really happening.
Baroness Hollins (CB)
My Lords, as the noble Lord says, we know a great deal about why people with learning disabilities die sooner than they should. What has been missing so far is a mechanism for taking that learning forward into practice. Such feedback mechanisms, and the fact that their reviews are mandatory, are the strengths of the other confidential enquiries. Will the Minister explain why the new national learning disability mortality review has not been established on the same footing as, for example, the national child death review?
Sugar Tax
Baroness Hollins Excerpts(10 years ago)
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Lord Prior of Brampton
My Lords, I think the Prime Minister’s position is that he will want to think long and hard before imposing a tax that would fall by and large on those least able to afford it. On the other hand, the Prime Minister and the Secretary of State for Health recognise that obesity is a scourge in this country, affecting young people in particular, and will want to implement a comprehensive range of measures to tackle it.
The Lord Privy Seal (Baroness Stowell of Beeston) (Con)
My Lords, I was just going to say that perhaps the House itself would like to indicate who it would like to ask a question because we are at that point in the cycle when it is not anybody’s turn next. However, I think the House has indicated that it would like to hear from the noble Baroness, Lady Hollins.
Baroness Hollins
My Lords, what assessment have Her Majesty’s Government made of evidence provided by the BMA—I should declare an interest here as chair of the BMA’s Board of Science—Public Health England and others on the anticipated positive impact of implementing a sugar tax? Does the Minister agree that we need a range of regulatory and educational measures to reduce the intake of added sugars, particularly among children and young people, but also adults with learning disabilities who are vulnerable to some of the same market pressures?
Lord Prior of Brampton
My Lords, the Government have taken into account a range of evidence from Public Health England, the McKinsey institute, the SACN and others in coming to their strategy. The noble Baroness is absolutely right that the response will need to take into account issues such as reformulation, portion size, availability and a whole range of other issues that affect sugar intake.
Down’s Syndrome: Do Not Resuscitate Orders
Baroness Hollins Excerpts(10 years, 1 month 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(10 years, 1 month 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(10 years, 3 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(10 years, 3 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(10 years, 6 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.