Learning Disabilities: Community-Based Support

Baroness Hollins Excerpts

Tuesday 22nd July 2014 Lords Chamber

[Earl Howe]

My Lords, the Government’s mandate for NHS England in the current year includes an objective which covers Winterbourne View concordat commitments. He is right that the deadline was missed. We are not satisfied with that and we are working very hard with NHS England to set out our expectations for progress and improved rates of discharge from in-patient settings. NHS England is going to produce an action plan this August but, in the mean time, it is doing three things. It is complying with the transforming care and Winterbourne View concordat commitments, which we have tasked it to do. It will set out what progress it expects to make and by when, with milestones, and it will provide real clarity on what success looks like—an important issue if we are trying to hold it to account—and how progress will be measured.

[Baroness Hollins (CB)]

My Lords, is the Minister aware that in the first six months of this year, 544 new people were admitted to assessment and treatment units and only 338 were transferred? Does he agree, therefore, that prevention is as important as discharge, and that in order to achieve both of these, skilled community support and skilled specialist support in the community are urgently needed and need to be funded?

[Earl Howe]

I do agree with the noble Baroness. For people who, with the right support, could and should be living in community-based settings, there is a variety of reasons why sometimes that does not happen. The lack of appropriate housing can be a barrier. For others, we know that clinical decisions are preventing discharge. NHS England is looking very carefully at how to strengthen second opinion to support people in in-patient settings to challenge the reasons for their placement as and when they need to. We are looking at making some capital funding available to support the transfer of people from in-patient care to community-based support.

People with Learning Disabilities

Baroness Hollins Excerpts

Thursday 12th June 2014 Lords Chamber

[Baroness Hollins]

Asked by

To ask Her Majesty’s Government what action they are taking to address the health inequalities found by the Confidential Inquiry into Premature Deaths of People with Learning Disabilities.

[Baroness Hollins (CB)]

My Lords, there are 1.5 million people with a learning disability in the United Kingdom. They are among our most vulnerable citizens and they experience shocking inequalities in healthcare. My interest is that I have been a learning disability psychiatrist for over 30 years—a clinician, teacher, researcher and policymaker—and my adult son has a learning disability.

In July last year we debated the recommendations made by CIPOLD, the Confidential Inquiry into the Premature Deaths of People with Learning Disabilities, and the Government’s formal response, which accepted most of CIPOLD’s recommendations. Before that debate I had tea with some families whose relatives have died due to inadequate healthcare in hospitals. Many of them stayed to watch the debate and many will be watching today.

How much progress has been made since then? We are still waiting for the Government’s One Year On report, promised by March this year. Why the delay? It seems that there are always delays. My own research 20 years ago found that adults with a learning disability were 58 times more likely to die before reaching the age of 50 than those in the general population. It took me a while to get that research published. Prestigious medical journals such as the British Medical Journal said that it was not of general medical interest. Eventually I published it in a small-circulation disability journal. Mencap then used my data to campaign.

In 2001, the Valuing People White Paper included my suggestion that a confidential inquiry into premature mortality should be established to investigate causes of death and contributory factors for this group of people. Nothing was done about it. Then, Mencap’s shocking Death by Indifference report in 2007 was followed by the Michael inquiry, which repeated the recommendation for a confidential inquiry. There was then yet another delay until 2010, when CIPOLD was finally established. In March 2013, it reported on the deaths of 247 people with learning disabilities over a three-year period in south-west England. It found that on average men with a learning disability died 13 years earlier and women 20 years earlier than a comparison group of non-disabled people. Of those deaths, 37% could probably have been avoided if these people had not been discriminated against. People had delayed access to diagnosis and treatment for the same conditions as the comparison group. This adds up to more than 1,200 avoidable deaths each year across England. The lack of public, professional and political outrage is unbelievable.

CIPOLD made several recommendations to address these health inequalities. In May 2014, the BMA’s Board of Science, which I chair, published a report on how to achieve parity of outcomes for people with learning disabilities. I will focus on the central recommendation from the confidential inquiry—also supported by the BMA—that a national learning disability mortality review body should be established.

What is the purpose of a national learning disability mortality review? It does not seek to blame individuals; its aims are to promote a culture of safety by collecting and analysing data on all deaths in this group. The review would monitor trends and identify specific actions and changes to practice that could be expected to reduce the number of avoidable deaths.

In May 2014, NHS England finally made a firm commitment to establishing a national learning disability mortality review by March 2015. It took 14 months for this commitment to be made, and it is deeply frustrating that another year’s delay is planned before the review body is established. By that time, an estimated 2,500 more people could have died needlessly since CIPOLD reported, but realistically no improvement can be expected in services until at least 2018. That would bring the number of avoidable deaths to 7,500 before any targeted action was likely. I will explain my rather pessimistic conclusion.

I was invited to join the cross-sector, multiagency mortality review oversight group. It had its initial meeting last week. To establish the review, the first step is to appoint a procurement partner to oversee the development of the service specification and tendering process. The mortality review then needs to gather data about trends and regional variations in excess mortality, and about contributory causes. Identifying people with a learning disability is fundamental to this. However, it is more difficult than it sounds.

The Government have previously agreed that better identification in the healthcare records of people with a learning disability is important. The 2012 power of information framework allows this information to be recorded electronically upon a person’s first contact with a healthcare professional. However, healthcare professionals seldom identify or record a person’s learning disability either in primary care or in hospital. Mencap says that of 900,000 people with a learning disability using services in England, only 200,000 have this recorded on their electronic GP records.

In their response to the confidential inquiry, the Government made a welcome decision to include excess under-60s mortality in adults with a learning disability as an indicator in the NHS outcomes framework. However, because of these and other data collection difficulties, they have not been able to provide the baseline figures. One problem is that the mortality review will need to link data from a number of registers, including GP registers, hospital episode statistics, and cancer, diabetes and mortality registries. The Department of Health says that it is working with NHS England, Public Health England and the Health and Social Care Information Centre to explore ways of linking cause of death with GP learning disability registers for this specific purpose.

Test work on obtaining mortality data through the General Practice Extraction Service was promised. A report on progress was to have been delivered by the end of 2013, but none of this has materialised. I understand that the Secretary of State could make a direction to the Health and Social Care Information Centre for this type of purpose. I am therefore seeking agreement from the noble Earl that he will ask the Secretary of State to issue a direction to ensure that this data linkage is made as a matter of urgency. Without it, the mortality review will stall and there will be further needless deaths. At the moment, the Health and Social Care Information Centre is not prioritising this work.

The mortality review has secured £1.5 million of funding for 2014-15 to set up the review function. Can the Minister confirm that this will be recurrent funding, clearly specified in the coming round of NHS business planning, so that we can begin to monitor deaths effectively to ensure that lessons are learnt and that improvements in practice are made?

Finally, the 2012 NHS mandate to NHS England sets out a requirement to provide joined-up care so that people,

“experience smooth transitions between care settings and organisations”.

The confidential inquiry provides many examples of where inadequate transitions have contributed to premature death. I commend the Government’s current emphasis on integrating health and social care, but I have found no reference to the deaths of people with learning disabilities in any of the documents or debates. Can the Minister advise us how the Government are sharing the learning from the confidential inquiry across all departmental programmes so that it becomes embedded as everyone’s responsibility and is at the forefront of everyone’s mind?

Taking action on the recommendations of the confidential inquiry, particularly to ensure that the mortality review is prioritised, is not simply a matter of fairness and equality. If we can get healthcare right for people with learning disabilities, we can probably get it right for everyone. People with learning disabilities and their families have waited a long time—too long—for change. This afternoon, Mencap delivered a petition signed by 2,700 people to the Department of Health asking for urgent action. I hope for a fast response.

I thank noble Lords for signing up for this debate. I am looking forward to their contributions and to the Minister’s response—and ultimately, I hope, with strong political leadership, to an end to the discrimination that people with learning disabilities have been facing for so long.

Abortion

Baroness Hollins Excerpts

Thursday 3rd April 2014 Grand Committee

[Baroness Hollins (CB)]

My Lords, as a mother with daughters and granddaughters, I find it unbelievable that aborting on grounds of female gender is not explicitly illegal; it certainly seems discriminatory.

As immediate past president of the BMA, I quote its guidance that,

“it is normally unethical to terminate a pregnancy on the basis of fetal sex alone, except in cases of severe x-linked disorders”,

which, of course, affect the male foetus.

The Minister recently stated that updated guidance is being prepared for abortion providers to make it,

“abundantly clear that gender selection is illegal”.—[Official Report, 12/2/14; col. 639.]

However, guidance alone is not legally binding. The Royal College of Obstetricians and Gynaecologists’ clinical guidance on induced abortion notes:

“Services should identify issues which make women particularly vulnerable”.

The RCOG includes domestic abuse and gender-based violence here and goes on to recommend that women should be referred to appropriate support services. Do we know whether this actually happens?

In January, the Independent attributed a reduction of between 1,400 and 4,700 expected live births of girls in the UK to sex-selective abortions. The Minister has in a previous response questioned the statistical analysis of the data, raising doubt about the Independent’s conclusion that sex-selective abortions are being performed. However women’s rights groups such as Jeena International and Karma Nirvana, which represent some of Britain’s minority women, are clear that gender abortions are happening here in the UK and that numbers are far from insignificant.

The reports available suggest that this is predominantly a cultural problem. Does the Minister agree that analysing the data regionally and by ethnicity could alert us to areas of concern? Will the Minister advise whether the Government would consider changing secondary legislation by amending regulations, thus providing clarity about the illegality of this apparently growing practice?

Health: Flour Fortification

Baroness Hollins Excerpts

Tuesday 21st January 2014 Lords Chamber

[Earl Howe]

My Lords, I can only repeat what I said before, which was that taking this step would be a major step by any standards. We must base it on a proper assessment of the risks and benefits. We have some excellent advice from SACN and we need to evaluate that advice fully before taking a decision.

[Baroness Hollins (CB)]

My Lords, does the Minister agree that the public education campaign has failed and that given that most pregnancies are unplanned and that the risk period for low folate levels is in the first 28 days, before a woman is aware that she is pregnant, there is actually some urgency to act?

[Earl Howe]

My Lords, I recognise the issues raised by the noble Baroness. We will of course take those into account.

World Innovation Summit for Health

Baroness Hollins Excerpts

Monday 16th December 2013 Lords Chamber

[Earl Howe]

I will write to my noble friend on the issue of political prisoners. On his main point of principle about parity of esteem, that principle—which essentially works to ensure that mental health has equal priority with physical health—is central to government-funded mental health programmes overseas; in particular, DfID funds programmes that promote the rights of people with mental health disorders to ensure that their needs are equally met. We recently invested £2 million for an additional three years’ support to the Disability Rights Fund, which makes disability, including mental health issues, a key international development priority.

[Baroness Hollins (CB)]

My Lords, people with learning disabilities are disproportionately affected by mental health problems, with three times as many people experiencing such issues. In this country we are very well aware of that, and despite our own problems, such as Winterbourne View, we actually lead the world in research and service development. This is not recognised in global initiatives such as the summit just referred to by my noble friend. What will the Government do to try to raise awareness of the mental health needs of this particularly vulnerable group of people?

[Earl Howe]

Often overseas we are working with very scant resources and the key is to build up the skills at primary care level in countries that are developing and may not have regarded those with learning disabilities as a priority for healthcare. It is a slow process but one that we are trying our best to support. Again, I would be happy to write to the noble Baroness with details.

Children and Families Bill

Baroness Hollins Excerpts

Wednesday 20th November 2013 Grand Committee

[Baroness Howe of Idlicote]

My Lords, very briefly, it was only about an hour ago that we had exactly the same situation having to be sorted out for kinship carers. For goodness’ sake, parent carers are about as kinship as you can get, and if they cannot be rolled into the same set up of proper analysis and proper attention to their needs, then what can happen? I hope the Minister is going to move this thing on as quickly as possible.

[Baroness Hollins (CB)]

My Lords, parents of disabled children often do not see themselves as carers, but they are. Their need for support has been argued and won over the past 20 years. They really are different from other parents. Their right to be able to have a life alongside caring for their disabled child has been fought for very successfully. Parent carers are often so focused on the needs of their child that they forget about their own health and well-being. It could be argued that failing to recognise the needs of the parent carer is against their right to a family life under the Human Rights Act. I was involved with a WHO/Europe declaration, Better Health, Better Lives, which was about the health and well-being of children and young people with intellectual disabilities across Europe and their families. It was signed by all the Health Ministers, including our own, in 2012. One of the 10 recommendations was about identifying the needs for support of parent carers. I join my voice to that of the noble Baroness in this amendment. What is the Government’s rationale for allowing that the carers of a disabled 13 year-old would effectively have rights inferior to those of the carers of an 18 year-old? I hope that the Minister will be able to respond.

[Baroness Howarth of Breckland]

My Lords, I wish to support the noble Baroness, Lady Pitkeathley, in this amendment. The Minister is right in saying that the framework is there in the present legislation or, at least, it should be there. The difficulty is that, because the focus among those who make assessments is split between adults and children and we do not have holistic family assessments, often the parents are lost. A family whom I met recently had just, after many years, been given a period of respite care, but the parent carers had not realised that that would make the difference in their being able to continue to care for their son, an extremely difficult young man. A series of workers had never suggested to them that their needs might be met in order to meet the needs of their child. That is the important message that front-line workers need to understand. This amendment would help them to understand that, unless you meet the needs of parents, you do not meet the needs of children.

I, too, had this query when I heard that it had been commented that to assess parents would undermine the rights of children. Assessing parents enhances the rights of children. Many of us who have worked in this field and continue to work with and meet families see it regularly. We also see when people fail to notice that parent carers are beginning to fail, simply because of their exhaustion and the fact that they have had no relief and no assessment for any kind of services, sometimes quite small ones that would make all the difference to their being able to continue.

I support this because we should have a family approach whereby children with disabilities will be maintained in their own homes rather than having to go into caring facilities because their parents are unable to look after them. I am losing my power of speech, like most of us at this time of night, so I leave it there. My only other point is that the noble Baroness, Lady Tyler, made a passionate speech about integration, which I think we all feel should happen.

Care Bill [HL]

Baroness Hollins Excerpts

Wednesday 16th October 2013 Lords Chamber

[Lord Patel of Bradford]

I thank the noble Baroness for her question. I would not like to associate mental health patients leaving hospital with the case that she has outlined, but clearly it is true that if we do not provide good quality aftercare services and encourage people to take them up but rather leave people in hospital anxious about whether they will have to pay for some of these services, then that is a potential result that we will have to live with, in circumstances where people do not have accommodation, health and social services provided or someone coming in and saying to them, “Deal with your accommodation and social care issues as well as your medication”. This is a real anxiety.

[Baroness Hollins (CB)]

My Lords, I commend the amendment of the noble Lord, Lord Patel of Bradford. I shall not say much more than that other than that he commented on the risk that the current situation could lead to more likelihood of a more medical approach to aftercare. Noble Lords might think that as a retired psychiatrist I would support that, but I do not; it is incredibly important that people who have a history of mental illness and need aftercare services receive the broadest possible support so that admission to hospital is not simply because there is inadequate support for them in the community. I commend his proposal.

[Baroness Barker (LD)]

My Lords, I wish to indicate my support for the continuance of Section 117, as I have done on many occasions before, not least during the passage of the most recent Mental Health Act—when various people, whom I shall not embarrass now by saying who they were, did indeed stand up to defend some of it—because it works.

When the Law Commission first made this proposal in its report, I had occasion to talk to that body. The noble Lord, Lord Patel, is right; the commission relies very heavily on the Mwanza case, and there is a great deal of dispute about the advisability of doing that. The question that I had when I first met the Law Commission still remains: when everything else in the legislation is geared towards enabling health and social care to work together to enable the transfer of people from acute health settings back into the community, why rip up the one piece of legislation that has been there doing that for 30 years? It is not just that some of us see Section 117 as being important with regard to the individuals whom we might know or come across; rather, we see it as an important means of bringing about the transfer that some of us have long hoped would happen in mental health services whereby, instead of having patients who revolve between acute and the community, we could have proper care planning in which people’s mental health needs were addressed by some of the same people, whichever setting they were in. It is not just about trying to preserve a pot of money; it is about trying to keep open a pathway to good and better practice. That is why the noble Lord, Lord Patel, as he always does in this area, has presented the House with a very persuasive argument. I have not yet fully understood why the department feels the need to make the changes that it is making.

Care Bill [HL]

Baroness Hollins Excerpts

Monday 14th October 2013 Lords Chamber

This is highly disputed territory. The changes in adult social care are likely to make it very disputed territory again. We have a whole raft of issues coming out of this Bill ripe for dispute between the citizen and the state without a convincing architecture to resolve them. The Government need to think again about this issue and look at putting some more convincing architecture in the Bill to make clear to the public what they can expect, both in statutory guidance and in any regulations the Government choose to make.

[Baroness Hollins (CB)]

My Lords, briefly, I support all the amendments in this group, particularly Amendment 124 to which I added my name. There were a number of voices calling for an appropriate system of redress for disputed decisions. Many people do not really understand social care systems and why decisions are taken and they feel powerless, often at a time when they are facing enormous challenges and may fear that complaining is going to lead to even more negative changes to their support. It seems to be a matter of justice to have a very clear and understood route to redress and I hope these amendments will be considered seriously.

[Lord Mackay of Clashfern]

My Lords, I support these amendments requiring a system of adjudication able to deal with the whole raft of matters dealt with under the Care Bill, including the borderline with continuing healthcare. The local authorities—152 or something of that sort—will administer the care system. It is quite easy to see that the same problems may arise in different local authority areas. Having a respected system for dealing with these matters would simplify a good deal of this area. I therefore strongly urge the Government to have in place a system which would provide reasonably rapid adjudication of all these issues. The social security commissioners provide a kind of example. One possible solution would be to extend the jurisdiction of the social security commissioners to include this area. Social security arrangements are certainly different from the care arrangements, but there may be sufficient similarity to make that possible. Something along the lines of the social security commissioners would be necessary for dealing with this and bringing into effect a system which local authorities right across the country would respect when one local authority’s decision was dealt with by this adjudicating authority.

--- Later in debate ---

[Baroness Meacher]

My Lords, I support Amendments 77, 80 and 82, to which I have added my name. I will also comment on Amendment 79.

I strongly support the need for adult safeguarding access orders and applaud the noble Baroness, Lady Greengross, for tabling the relevant amendments. As we discussed last week, as local authority resources shrink further—the Minister referred to a 5% reduction so far—the reality is that care will be left more and more in the hands of relatives, many of whom may themselves be elderly and frail; or indeed they may be younger, with childcare responsibilities and have great difficulty in providing support in all directions. Inevitably, many family carers will find it extremely hard to cope, and there will undoubtedly be situations when elderly or disabled people are neglected or in some way abused. I fear that the only way in which family carers will get the help they need will be if adult safeguarding access orders are available, so that following an alert the local authority can become involved, assess the situation and, where appropriate, prioritise further support.

As public services shrink, the neglect of elderly and disabled people—even gross negligence in some cases—will become a growing problem that could very easily become a national scandal. Having said all that, I part company with my noble friend Lady Greengross when it comes to Amendment 79. We have the criminal law. It may not cover absolutely everything but I would not want to see any increase in the likelihood that an overburdened family carer could face criminal charges if they reach the point where they cannot continue to care appropriately for a relative. For me, the purpose of adult safeguarding access orders is to ensure that problems are identified—they certainly need to be—and support is made available in order to enable a carer to cope in the style they would wish to provide.

[Baroness Hollins]

My Lords, I support the amendment in the name of my noble friend Lady Greengross on the duty to report adults at risk, which replicates a duty within the Welsh Bill. I spoke to a similar amendment in Committee.

Providers, together with other partners, will often be best placed to identify abuse and neglect, and it makes sense for them to report to the local authority. At Winterbourne View there were 40 safeguarding alerts, 29 incidents where the police were involved and 78 attendances at A&E but agencies did not take any action. They believed it was someone else’s duty to report and take action. Putting this duty in the Bill would emphasise its importance and would be a vital step in ensuring that the local authority is notified so that it can then take the appropriate action. Leaving this to guidance and local protocols is not a satisfactory solution.

I also support my noble friend Lord Rix’s Amendments 79A and 81A on safeguarding. My noble friend has highlighted how abuse comes in many different forms. The breakdown of the nature of referrals is set out clearly in the Abuse of Vulnerable Adults in England 2012-13 report. The most common was physical abuse at 38,500. There were 24,500 referrals for financial abuse, the third highest. It seems an eminently sensible amendment to add some balance to this clause.

My noble friend’s amendment on safeguarding adults boards sending copies of their annual report to the Secretary of State also seems eminently sensible. Looking at safeguarding annual reports across the country would allow the Secretary of State to see the national picture as well as to monitor what works and what does not. Guidance can be issued where worrying trends are observed and good practice shared. This is about leadership at a national and strategic level, which could help to tackle the abuse and neglect of the most vulnerable members of our society. I do not think it is about extra bureaucracy.

[Lord Warner]

My Lords, I rise briefly to support Amendment 77 and to ask the noble Earl whether his department has actually looked at the legislation that protects children to see whether this is in line with that legislation.

My child protection legislation knowledge and expertise are a bit rusty but the basic rule of child protection is that you see the child in their home environment. That is rule number one. If you look at many of the cases that have hit the headlines after going wrong, it is due to a failure to secure entry early on in the proceedings to see the child in their home environment. The noble Baroness, Lady Greengross, has highlighted a very important issue. I am still struggling to understand why the Scots and the Welsh think it is important to retain this kind of approach but we in England do not. There does not seem to be a consistency of purpose across the borders.

Lastly, with regard to neglect, if you look at the data on child protection, I think the fastest growing area in which courts are authorising care orders and approving care proceedings for children is neglect. We should not shy away from the fact that when times are hard this may be a growth area. I am very pleased that the noble Baroness, Lady Greengross, has included abuse and neglect in her amendment.

Mental and Physical Health: Parity of Esteem

Baroness Hollins Excerpts

Thursday 10th October 2013 Lords Chamber

[Baroness Hollins (CB)]

My Lords,

“No health without mental health”,

was the strap line adopted by the Royal College of Psychiatrists during my presidency and now for the Government’s mental health strategy. Dividing a person’s health into either physical or mental is a false dichotomy and one that has for too long encouraged us to focus on parts of a person rather than on that person as a whole. I remember as a medical student being asked to, “See the spleen in bed six”. Things have moved on a little since then, but psychiatric patients still find themselves being referred to as schizophrenics or manic depressives.

Parity of esteem is not, of course, a new concept. As long ago as 1946, the World Health Organisation defined health as,

“a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”.

Some 67 years later, billions of pounds in resources have been poured into physical health. We have created sophisticated cancer drugs, mapped the human genome and surgery can be done through tiny incisions. We do not even think of these things as remarkable any more. But the unequal allocation of funding and resources has left mental health some way behind physical health. Parity is not just about increasing resources for those with serious mental illness, but about attending to the physical health of people with mental illness or people with learning disabilities and attending to the mental health of people with physical illnesses.

As an example, GPs receive a payment for offering a health check to people with learning disabilities each year, but although this has been policy for some time, less than 50% of people with learning disabilities have yet had one—no wonder their life expectancy is so much lower than others when the reactive approach to physical health and mental health does not take account of the extra needs of some members of society in order to achieve good health. I would welcome a comment from the Minister about this point.

Parity is something that most people have not even started to think about. The BMA Board of Science, which I chair, is preparing a report on parity of esteem for its members at the moment. But as a colleague at the BMA recently commented, giving parity to mental health is a massive paradigm shift, which will have huge effects for many years to come. Despite the Equality Act, few healthcare staff understand that it applies to disabled people, including those with mental disorders, who are using mainstream health services. Sadly, discrimination is too often alive and well with respect to mental illness and learning disability.

Parity will have an effect on the training and education of all healthcare staff. It will have an effect on the commissioning and organisation of whole person healthcare. Just think: the time may have come to employ psychiatrists in acute hospitals, not just as part of liaison teams, but on the same terms and in the same numbers as other consultants so that more timely assessments and treatments can be offered. There could be psychiatrists who work with children, women, pregnant mothers, older people and adults, working alongside paediatricians, obstetricians, physicians, in the accident and emergency department and so on.

To focus so many of our resources on merely one aspect of health not only leaves other aspects untreated, it makes it difficult to treat physical illness properly. To use an analogy, it is like a three-legged stool, which supports the physical, mental and social health of a well-functioning human being. To take any one of those legs away or to shorten one leg is to leave the stool unbalanced and potentially unable to stand up at all.

I have spent most of my working life in the field of learning disability, both as a psychiatrist and as a parent, and I have often said that if you get it right for people with a learning disability, you will get it right for everyone. People with learning disabilities have complex needs and the interplay and overlap between physical and mental health is inescapable in this patient group. Not only that, but people with learning disabilities have higher levels of both physical and mental health needs than the general population. For example, they are twice as likely to suffer from depression and three times as likely to suffer from schizophrenia. The life expectancy of someone with a learning disability is 20 years less than the general population, even when factors directly related to the learning disability are removed. One in five people with a learning disability will not see their 50th birthday, and half of all people with a learning disability will die from pneumonia, often caused by choking on the wrong type of food or drink or aspirating it and getting pneumonia as a consequence.

This health inequality is often caused by a failure to consider both physical and mental causes of a deterioration in functioning, or to attribute any difficulties to the underlying learning disability—a type of diagnostic overshadowing in that it must be due to the learning disability. The health needs of this group are significant, but if you get it right for them, you get it right for others too.

Take, for example, John. John was admitted to hospital for an investigation of his physical deterioration, but in order to investigate the problems fully, he needed some investigations, some of them uncomfortable, unpleasant or painful. The staff made an attempt to get John to comply, but they were busy and did not know what to do. They shouted at him, begged him, offered him chocolate and called the consultant, but they did not make effective reasonable adjustments to facilitate his care. They did not understand his particular needs. After two weeks, John had had no investigations and his bed was needed, so he was sent home.

Once back at home, John remained listless, tired and kept losing weight. His worried carers eventually persuaded John to go to his GP where he was diagnosed with depression. He took anti-depressives but, crucially, was also given the time to talk about the things that were worrying him. That is unusual, because few psychological therapists have developed the skills to adapt their treatment to meet the individual communication needs of people with learning disabilities or autism.

The second time he went into hospital, because he continued to deteriorate, John had a hospital passport. This is an innovative idea to give hospital staff some guidance about his particular needs. He also had an understanding of what to expect and his depression had been treated. This time he had a successful hospital admission. He was diagnosed with cancer of the bowel, fortunately quite early. He was operated on and has made a successful recovery.

I do not just tell noble Lords that as a story with a happy ending—it could so easily have been different. The importance of this story is that you absolutely cannot adequately treat someone's physical illness without an understanding of that person as a whole. People with a learning disability are often unable to tell us in words about what is wrong and that is why we need to be alert to all the reasons why someone may be ill. But if we get that right, how much easier it will be to remember to ask other people about themselves as a whole.

Failures such as Winterbourne View and Mid Staffs happened because people were not seen as whole people. No one took the time to find out what the problem really was or how to fix it. In the case of Winterbourne View, it was so much easier to send people away to some specialist service than to really think about what was wrong.

You would not build a stool with only one leg and you absolutely cannot build an effective, equitable health system by focusing just on one aspect of health—by not giving parity of esteem to mental health. I have one word of caution. Our mental health is not all down to good assessment and good treatment. Prevention, and mentally healthy lifestyles, are key. That is why cross-government initiatives that recognise the relationship between, for example, poverty, unemployment and mental illness, are important.

In congratulating the noble Lord, Lord Layard, on securing this debate, which manages to coincide with World Mental Health Day, and for his sustained commitment to mental health, I would like to add my support to his suggestion that a senior Minister for mental health be appointed to work across all relevant departments. This is not just a matter for the Department of Health. Will our Government’s foresight in committing to achieve parity of esteem be demonstrable in our international policy and influence as well?

Finally, I hope that the Minister will agree with me that DfID really could help to influence attitudes internationally. There are estimates that 20% of the world’s population will be seriously depressed by 2020; yet only 1% of aid budgets has been committed to mental health services. Can that be right?

Care Bill [HL]

Baroness Hollins Excerpts

Monday 22nd July 2013 Lords Chamber

Moved by

[Baroness Hollins]

92ZZAH: Clause 41, page 35, line 13, after “neglect” insert “in any setting”

[Baroness Hollins]

My Lords, I declare an interest as the family carer of an adult man who has publicly funded care and support.

My noble friend Lord Rix and I have tabled eight amendments in this group which together aim to strengthen the safeguarding section of the Bill, Clause 41 and accompanying Schedule 2.

I know that Mencap and others welcome the focus that the Bill gives to safeguarding. At Second Reading, my noble friend said that he regretted the lack of a duty on providers or relevant partners to inform the local authority when they suspect that an adult is at risk. The Minister replied:

“The local authority duty is to make inquiries to decide what action should be taken. One such form of action is to assess the adult’s needs … where it appears, ‘that an adult may have needs for care and support’”.—[Official Report, 21/5/13; col. 830.]

However, Mencap and others remain concerned about the lack of a duty on all providers and relevant partners to advise the local authority that there is a need to assess.

We need not look too far into the past to find examples of failings. The serious case review looking at the deaths of Francesca Hardwick and her mother Fiona Pilkington found that safeguarding procedures had failed. Likewise, at Winterbourne View hospital, it took a whistleblower with a hidden camera to expose the abuse and get the authorities and police to take action. We need to get this right and, while the Bill improves on what we have, these amendments would create watertight legislation that provided the level of protection that vulnerable people need.

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[Baroness Barker]

My Lords, I support the amendments of the noble Baroness, Lady Greengross. They go straight to a gap that exists for older people who have capacity but are physically dependent upon people who may be abusing them. With all respect to the noble Lord, Lord Patel—whose arguments I listened to very carefully because they were very thoughtful, and I would not want to disregard what Mind has found in its consultation with its members—I point out to him that members of Mind are likely to have protection under either the Mental Health Act or the Mental Capacity Act. The people to whom the amendment tabled by the noble Baroness, Lady Greengross, is addressed do not have that protection. For me, that swings the argument.

Elder abuse has a rather odd standing in the general consciousness. It does not have the same profile as the abuse of children. It goes up and down the public agenda depending upon whether there has been some scandal or an awful case in the papers. People’s reactions to it vary enormously. When people are polled on their views about this, the phrasing of the questions in any consultation can have a profound impact. Were we faced with a question that said: “Would you like social workers to have the power to intrude into your house?”, most of us would say no, but if we were asked, “Do you think that somebody ought to be able to look out for people who are extremely vulnerable and may not be able to get out and tell anybody?”, we would say yes. That goes straight to the consultation that the Government have already held, and the reason for some of its findings. Professionals who have had experience of dealing with people and operating under the law have said that they think there needs to be a greater degree of protection, albeit with brakes and conditions, such as the necessity of getting the agreement of a JP—not just social workers barging in because they feel like it.

Taken together, the amendments tabled by the noble Baroness, Lady Greengross, get the right balance. They are not about empowering bossy professionals to wade in regardless of what people want but they are quite important, not least because of something the noble Baroness, Lady Greengross, said, which was of tremendous importance: the largest percentage of people who abuse vulnerable elderly adults are family members. The consequence of that is that very often people who are being abused are highly reluctant to do anything about it because they fear that there will be repercussions against their family members. That is why it is necessary to have a bit more legal force behind some of this than we would otherwise think we should, and I think that, on balance, the noble Baroness’s amendments are right and proportionate.

Finally, there is a very good case for the Government to accept the amendments or something like them within this legislation. They should do it now when we are not making decisions in the shadow of a scandal and when we can talk about best practice in neutral terms.

[Baroness Hollins]

My Lords, I shall speak briefly in support of my noble friend’s Amendment 92ZFC because it applies to people with learning disabilities—particularly people with mild or moderate learning disabilities who may not meet the eligibility criteria for care and support in a situation where someone has befriended a person with a learning disability, moved in with them and concerns have been raised by neighbours that the person may be being abused. This is not about family carers; it is a mate crime. It is the sort of crime of which Steven Hoskin was a victim. He was subsequently murdered. Somebody moves in, and the local authority is unable to speak to the adult with a learning disability to check whether they are okay because the other person always answers the door and will not let anybody in. This power of access would change that, and I support my noble friend.

[Baroness Wheeler]

My Lords, when the Committee considered the Clause 2 duty on preventing needs for care and support, the noble Lord, Lord Rix—who I am sorry cannot be in his place today—put forward a strong case for ensuring that safeguarding is explicit in the Bill alongside the other duties of prevention relating to adults and carers. We gave strong support to that. The focus on safeguarding vulnerable adults should not just be on protection once abuse or neglect has taken place. Local authorities, and agencies on their behalf, should also be obliged and guided proactively to prevent abuse occurring in the first place.

We welcome placing safeguarding on a statutory footing in the Bill and the establishment of statutory safeguarding adults boards. This builds on legislation, regulations and advice on principles and frameworks for safeguarding adults and children that Labour established up to 2009 and which the Government are taking forward in the Bill. We were, however, always cautious about bringing adult and children’s safeguarding together under one structure as some councils have done. Adult and children’s safeguarding issues are not the same, and I would be grateful if the Minister will comment on the Government’s approach to this in future.

The amendments tabled by the noble Lord, Lord Rix, and the noble Baroness, Lady Hollins, include important issues which we support to ensure that safeguarding is properly identified, reported and investigated in all health and social care settings, not just social care, which is particularly important in the light of the appalling neglect and abuse that happened to people with learning difficulties at Winterbourne View. In this vein, the intention behind Amendment 92ZF to place a duty on providers or other relevant partners of the local authority to report when they suspect an adult is at risk of experiencing abuse or neglect is also important, as local authorities will not be able to identify all situations where people are at risk.

We also support the need to ensure that an adult has access to support and advocacy during a safeguarding investigation; the need to specify in the Bill areas of abuse, as set out in the No Secrets guidance, in addition to the reference to financial abuse; and the need for abuse to be recognised as abuse whether it is perpetrated as the result of deliberate intent, negligence or ignorance. These are all strong areas of concern expressed by noble Lords today and by key stakeholders. I also underline the vital need, when so much care is now contracted out and provided by the independent, private and voluntary sectors, to ensure that safeguarding is built into procurement and contract management in health and social care. Will the Minister inform the Committee how the Government intend to ensure this happens?

Amendment 92ZFC, tabled by the noble Baroness, Lady Greengross, puts forward a comprehensive case for the power of access by a third party to private premises if they suspect that a vulnerable adult is being abused. As the Government’s recent consultation response on this issue shows, there is both strong support and strong opposition among local authorities, NHS trusts, the health and social care professions and patients and user organisations on this sensitive and complex issue, although we have to remember that the consultation response was relatively low in terms of local authority and NHS trust participation and that many of the responses appeared not to have fully understood the proposed limitation of the power to situations where the third party is denying access, not the individual.

It is clear that there is a significant gap in the current legislation for dealing with third-party denial of access to some of the most vulnerable adults—women subject to abuse by violent partners or a person with a learning disability being bullied by a friend who has moved into their home—which the Bill needs to take the opportunity to address. The noble Baroness’s amendment is strongly supported by, among others, the Equality and Human Rights Commission, the College of Social Work, Mencap and Age UK, and sets out a tight framework and the limitations and restrictions that would apply. Local authorities would have to apply to the courts and demonstrate reasonable cause for suspecting that someone is in danger of abuse. The Equality and Human Rights Commission argues, as have noble Lords, that alongside the proposed duty of local authorities to make inquiries set out in Amendment 92ZFD, the power of access will enable more intervention in response to allegations or suspicions of abuse or neglect and get the balance right, as the noble Baroness, Lady Barker, said. The critical point of the power of access is to enable the local authority to access the person and speak to them alone to assess the situation. It is not about entering someone’s house for no good reason. It is a last-resort power and is by no means presented as a solution in itself.

On balance, we support the case for inclusion in the Bill of the power of access by a social worker and the police where there is a danger of third-party abuse. Our work on safeguarding when we were in government, especially in relation to children, makes us sympathetic to the approach in the amendment tabled by the noble Baroness, Lady Greengross. However, we of course recognise the strong concerns of Mind on this issue and of the Royal College of General Practitioners, which would prefer the use of other options, such as working with the sector to coproduce best-practice guidelines. Will the Minister explain to the Committee how the Government propose to address that denial of access by a third party to a potentially vulnerable adult without dealing with this issue in the Bill?

The issues raised by the noble Lord, Lord Low, in his Amendment 92AA on the need to clarify the application of the Human Rights Act to regulated care services are familiar to the House, as we thoroughly debated and aired similar grounds during the passage of the Health and Social Care Act. There are now concerns that amendments to that Act and the National Assistance Act in the Care Bill have set the clock back on the application of the HRA to private and voluntary sector residential care home providers. The noble Lord, Lord Low, has set out these concerns clearly, this time powerfully supported by the noble Lord, Lord Pannick. I hope that the Minister will respond positively to the pleas from noble Lords to think again on this matter.

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[Baroness Northover]

That is a very interesting point. This is a very serious area. We want to make sure that the Human Rights Act applies in the way that we think it does, and in the way that the noble Lord’s Government brought in and thought that it did apply. I have a feeling that this is an issue that we will revisit. I remember the discussions last year on this between the noble Lord, Lord Low, my noble and learned friend Lord Mackay and others. I would not be at all surprised if there were further discussions.

The important point here is to protect people, to make sure that the law protects them and to do nothing that undermines the effect of the Human Rights Act in other areas. The Government’s position has been that all providers of publicly arranged health and social care services, including those in the private and voluntary sectors, should consider themselves to be bound by the duty imposed by Section 6 of the Human Rights Act 1998 not to act in a way that is incompatible with the convention rights. The CQC, as the regulator, is subject to the HRA, which may give rise to a positive obligation to ensure that individuals are protected from treatment that is contrary to their convention rights. As noble Lords will know, the Ministry of Justice is concerned that every time you add a provision, you may inadvertently have an effect on the umbrella application of the Act.

The noble Lord, Lord Low, asked about the repeal of the National Assistance Act. I assure the noble Lord that there will be a consequential amendment to Section 145 of the Health and Social Care Act 2008 so that there will be no regression in human rights legislation. He will also be able to set in context that change, in the light of the discussions we had earlier.

I point out that there are strong regulatory powers to ensure that the Care Quality Commission can enforce regulatory requirements which are compatible with the provisions of the European convention. This applies to all providers of regulated care to people who use care and support services, whether publicly or privately funded.

As to Amendment 92ZFE, we agree with the noble Baroness, Lady Greengross, that people who perpetrate or allow abuse and neglect must face serious consequences, including prosecution where an offence has been committed. This should also be read in the light of the discussion on the Human Rights Act. The Bill does not seek to duplicate existing law. Civil law currently provides redress for cases of neglect, and criminal law prohibits assault, which would include much of what is sought in this amendment. We therefore believe that there are already adequate provisions in place to deal with such cases.

My noble friend Lady Barker spoke of the potential creation of a new offence of abuse and neglect of somebody who has capacity. There is legislation that protects those with capacity, and there are powers that local authorities and the police can use. These include the Anti-social Behaviour Act 2003 and the Crime and Disorder Act 1998, and the police also have wide powers to enter premises for specific purposes with or without a warrant. The inherent jurisdiction of the High Court ensures that there is no gap.

Where an adult lacks capacity, there is an existing offence of ill treatment or neglect by a person who has care of the adult or is authorised to act for the adult under the provisions of the Mental Capacity Act. In our view, this is a case where an offence is justified because of the evidence that such people are highly vulnerable to abuse, neglect and exploitation.

I turn to Amendment 92ZK, in the name of the noble Baroness, Lady Greengross. We all want local authorities to foster an open and honest culture in which employees feel able to express genuine concerns without fear of repercussions. However, we do not feel that this amendment is necessary. As I think we would all agree, the law on its own cannot change organisational culture. We need to work with and through local authorities to consider what barriers exist to the type of open and honest environment that we want to see. This is something that we have debated a great deal and there has been much emphasis on leadership. However, legislation can have an effective role in setting parameters and reinforcing expectations, which in turn impact on culture. In this regard, the Government have already confirmed their intention to introduce an explicit duty of candour on providers of health and care and support. This will be introduced as a CQC registration requirement and will mean that providers will have to ensure that staff and clinicians are open with patients and service users where there are failings in care.

I turn to the need to be able to gain access to a person suspected of experiencing abuse or neglect where that access is denied by a third party. The Government carried out a full consultation on a potential power of entry, very similar to the access order proposed by the noble Baroness, Lady Greengross, in Amendment 92ZFC. We received no compelling evidence to warrant such a power and, indeed, there was and remains considerable opposition to it from members of the public and some third-sector organisations. We have heard some of the concerns expressed by the noble Lord, Lord Patel, and the contrary view expressed by my noble friend Lady Barker and the noble Baroness, Lady Wheeler. We recognise that this is a sensitive and complex area of work, but we believe that understanding what positive work by skilled professionals can achieve and promoting that is a more desirable, effective and sustainable route to take. As with all the new duties and powers in the Bill, we will pay close attention to implementation and address any issues that arise.

Perhaps I may mention to the noble Baroness, Lady Wheeler, that, although the consultation has ended, we have continued to get written correspondence from both members of the public and third-sector organisations petitioning the Government not to introduce a power of entry. They are particularly concerned that such a power would be used as a quick fix that would neither resolve the problem nor improve good professional practice where the intention is to try to build trusting relationships. From what noble Lords have said, it is very clear that trying to get the balance right and focusing on the protection of the individual can be very challenging in such circumstances.

We understand the concerns that lie behind Amendment 92ZF, tabled by the noble Baroness, Lady Hollins. It is of course imperative that anyone—but especially those in the NHS and local authorities—who suspects abuse or neglect knows what action to take. Organisations should make their procedures clear and boards should widely publicise information on this issue.

Amendments 92ZFF and 92ZJ, tabled by the noble Baroness, Lady Greengross, emphasise the need for the involvement of social work-qualified staff in boards and reviews. We understand what the noble Baroness is saying. In Schedule 2, we make it clear that both the chairs and members of boards must have,

“the required skills and experience”.

We will elaborate on that in guidance and ensure that the importance of social work is recognised and supported. Guidance will also cover the importance of ensuring appropriately qualified oversight of safeguarding adults reviews.

This has been a very important and wide-ranging group of amendments concerning a new step that we are taking to try to ensure that vulnerable adults are offered the best protection. We welcome noble Lords’ probing of the Government. We are all trying to secure the same outcome, and we need to be challenged on how best to achieve that. I hope that noble Lords will have taken on board our reasoning behind doing things as we are and that they will be reassured that we are indeed delivering through this Bill what they are seeking. I hope that they have been reassured that their concerns have been carefully considered and addressed and, on that basis, I hope that the noble Baroness will withdraw her amendment.

[Baroness Hollins]

My Lords, I thank the noble Baroness for her characteristically thoughtful comments in response to these amendments. I am reassured by many of the points that she has made, although one issue that I felt she did not fully address is the need to clarify thresholds for reporting abuse. I am also disappointed with her response to the amendment proposing a power of access, which I strongly support for its relevance to people with learning disabilities. Going by the feelings that have been expressed in the Committee, I think that a number of people would welcome an opportunity to discuss some of these matters a little further and perhaps to bring them back on Report. However, I beg leave to withdraw the amendment.

Amendment 92ZZAH withdrawn.