Health: Flour Fortification

Baroness Hollins Excerpts
Tuesday 21st January 2014

(10 years, 10 months ago)

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Earl Howe Portrait Earl Howe
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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 Portrait Baroness Hollins (CB)
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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 Portrait Earl Howe
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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

(10 years, 11 months ago)

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Earl Howe Portrait Earl Howe
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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 Portrait Baroness Hollins (CB)
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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 Portrait Earl Howe
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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

(11 years ago)

Grand Committee
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Baroness Howe of Idlicote Portrait Baroness Howe of Idlicote
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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 Portrait Baroness Hollins (CB)
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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 Portrait Baroness Howarth of Breckland
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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

(11 years, 1 month ago)

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Lord Patel of Bradford Portrait Lord Patel of Bradford
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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 Portrait Baroness Hollins (CB)
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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 Portrait Baroness Barker (LD)
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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

(11 years, 1 month ago)

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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 Portrait Baroness Hollins (CB)
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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 Portrait Lord Mackay of Clashfern
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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.

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Baroness Meacher Portrait Baroness Meacher
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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 Portrait Baroness Hollins
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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 Portrait Lord Warner
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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

(11 years, 1 month ago)

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Baroness Hollins Portrait Baroness Hollins (CB)
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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

(11 years, 4 months ago)

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Moved by
92ZZAH: Clause 41, page 35, line 13, after “neglect” insert “in any setting”
Baroness Hollins Portrait Baroness Hollins
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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 Portrait Baroness Barker
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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 Portrait Baroness Hollins
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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 Portrait Baroness Wheeler
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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 Portrait Baroness Northover
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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 Portrait Baroness Hollins
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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.

People with Learning Disabilities: Health Inequalities

Baroness Hollins Excerpts
Thursday 18th July 2013

(11 years, 4 months ago)

Lords Chamber
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Asked by
Baroness Hollins Portrait Baroness Hollins
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To ask Her Majesty’s Government what steps they are taking to address the health inequalities highlighted by the Confidential Inquiry into Premature Deaths of People with Learning Disabilities.

Baroness Hollins Portrait Baroness Hollins
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My Lords, this is such a timely and important debate, coming the same week as the Keogh mortality review, the Neuberger report and the latest report from the Health Service Ombudsman. Our focus tonight is on health inequalities for a group that comprises some 3% of the population. Our focus is on the remit and findings of the Confidential Inquiry into Premature Deaths of People with a Learning Disability. The inquiry’s report was published in March and the Government’s response was released last Friday. The House will wish to be reminded that I have worked as a psychiatrist with people with learning disabilities for over 30 years and that my adult son has a learning disability.

The institutional discrimination and health inequalities suffered by people with learning disabilities come as little surprise to many of us. For me it is a throwback to some of my own research from over 20 years ago when I reviewed the age and causes of death of people with learning disabilities in three London boroughs over a 10-year period. I found that adults with a learning disability were 58 times more likely to die before the age of 50 than the general population. Over half died of respiratory disease—which I presumed to be a final common pathway—compared with only 15% of the general population. The problem was that I could not get the results published. The BMJ and other medical journals said that it was not of wide enough interest. It was eventually published in a specialist disability journal. Government began to show leadership, however, with the White Paper, Valuing People, and Chapter 6, which addressed healthcare, accepted my suggestion that a confidential inquiry should be included as a recommendation.

In 2006 a formal investigation was conducted by the Disability Rights Commission and in 2007 Mencap published Death by Indifference. By this stage, although Valuing People had recommended a confidential inquiry, it had still not been set up. Death by Indifference was a landmark report and it told the stories of six people with a learning disability who had died in NHS care. It triggered an independent inquiry which was led by Sir Jonathan Michael—I should mention that I was a member of the inquiry team—and the Parliamentary and Health Service Ombudsman conducted an investigation into the six deaths. The Michael report, Healthcare for All, made a firm recommendation to set up a confidential inquiry and the Government at last agreed.

What is a confidential inquiry? It aims to identify common causes of deaths and to make recommendations to improve clinical practice. There are many in existence, some going back more than 50 years, with varying degrees of effectiveness. They involve the systematic review of cases with the identity of patients and clinicians remaining confidential and only aggregated findings being made public. Several of these inquiries have resulted in long-term monitoring and regular reports and one of these is NCEPOD, the National Confidential Enquiry into Patient Outcome and Death. It started with a pilot study of mortality related to anaesthesia but steadily expanded into a wider inquiry to cover all hospital specialties, now including near misses as well as deaths. NCEPOD distributes reports on very specific mortality concerns and if it feels that important recommendations are not being met, it lobbies at both local and national levels. It is this ongoing monitoring and national oversight of the uptake of recommendations combined with the fact that it has been in existence for decades which makes this inquiry effective.

In the confidential inquiry that we debate today Dr Pauline Heslop and her team have recommended the establishment of a national mortality review—basically a beefed-up confidential inquiry. This would guide detailed local reviews but also include a national overview panel. Its wider remit and role would provide an oversight of core data relating to all deaths of people with a learning disability. It could monitor and direct where more detailed reviews need to take place and, vitally, it would make recommendations for changes in practice. A longer-term commitment to this vulnerable patient group is needed for a real impact to be seen. The United States started similar mortality reviews and over the past 10 years it has seen an increase in life expectancy among people with a learning disability. The confidential inquiry we are discussing today was only established for three years—effectively as a pilot. It looked at the deaths of 233 adults and 14 children across five PCT areas in the south-west. Its focus was to determine whether the deaths of people with learning disabilities were premature. The principal aims were to detect factors which contributed to death as well as gaps in health and care services.

The results expose the gulf that still exists between the care received by people with a learning disability and that received by the rest of the population. It found that 37% of deaths would have been potentially avoidable if good quality healthcare had been provided. It found that on average, men with a learning disability died 13 years earlier and women 20 years earlier than the general population. Mencap says that this means that over 1,200 deaths each year across England could have been avoided with good-quality non-discriminatory healthcare—almost 25 children and adults per week. That is a shocking figure, which equates to the number of people thought to have died needlessly over a four-year period at the Mid Staffordshire hospital.

I am sure that other noble Lords will address some of the findings in more detail, but I will focus on the wider picture for a little longer. While Mid Staffs rightly hit the headlines, as did Sir Bruce Keogh’s report earlier this week, the avoidable deaths of people with a learning disability, some of the most vulnerable people in our society, go largely underreported and consistently fail to feature prominently on the parliamentary agenda.

What are the Government doing about premature mortality? On 5 March 2013, Jeremy Hunt said in the other place:

“Today, I am publishing ‘Living Well for Longer: A call to action to reduce avoidable premature mortality’”.—[Official Report, Commons, 5/3/13; col. 60WS.]

Sadly but perhaps predictably, the document did not even mention people with learning disabilities. That is despite the fact that in the 2011-12 NHS outcomes framework, the Department of Health added a placeholder indicator for measuring premature mortality in people with learning disabilities. This was further specified as the,

“Excess under 60 mortality rate in adults with learning disabilities”—

“under 60” because that reflects the current average age of death for people with learning disabilities. Unfortunately in the latest NOF—national outcomes framework—for 2013-14, this indicator is still in the inactive “development” stage. Will the Minister advise when the Government will give it live status and assure the House that the threshold will be reviewed year on year to bring it closer to the threshold of age 75, as in the general population? That would ensure the collection and publication of some vital data.

However, one of the problems is the difficulty that we still have in the identification of people with learning disabilities in health and care records. This was one of the recommendations of the Michael inquiry and, again, the confidential inquiry notes it as being of critical importance. Dr Heslop explains that concerns would never have been raised about many cases reviewed by the confidential inquiry had their care not been scrutinised. I agree with her that professionals learn more and change their practice more by being reflective and reviewing cases using a root-cause analysis approach. Merely telling a professional to do something rarely works, as is evidenced by the lack of adherence to the Mental Capacity Act and the Equality Act.

This inquiry provides a firm foundation of knowledge upon which the Government could take real and purposeful action—urgent action—to address these startling and persistent inequalities. However, this is not borne out in the Government’s unambitious response which acknowledges the findings that health inequalities exist but contains no set goals or timescales and no ways of measuring improvements. They could instead have followed the structured style of response they made to the Winterbourne View hospital scandal by working with stakeholders, including families and carers—many of whom are listening to the debate today, and whose presence I welcome. Will the Government consider a concordat to take forward the confidential inquiry recommendations and the construction of a clear, timetabled action plan?

The lack of commitment to the inquiry’s central recommendation about a mortality review body is disappointing. Despite the overwhelming evidence that this is the right thing to do, a decision will not be made until March 2014, by which time another 1,000 children and adults will have died prematurely. I urge the Government to bring this to the top of the agenda, not to push it down the priority list yet again.

As for the Francis inquiry, we say yes; but what about the enormity of the challenge that the Government face in achieving equality in access to healthcare and in health outcomes for this group? I ask the Minister to persuade the Secretary of State to include in the remit of all future health reports and inquiries, and in the work of the new Chief Inspector of Hospitals, the question, “Did people with learning disabilities fare better or worse?”. At the moment the answer is probably “worse” in all aspects of healthcare. I know that noble Lords will pick up many of the specific issues that I have not touched on, and I thank them for their support and passion for this debate. I also look forward to the Minister’s response and hope that he will be able to reassure this House that the Government are not indifferent and will act much more persuasively in future.

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Earl Howe Portrait The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
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My Lords, I thank all the speakers in this excellent debate for their very powerful contributions, not least the noble Baroness, Lady Hollins. I want to start by paying tribute to Mencap, which has been campaigning vigorously against the preventable deaths of people with learning disabilities. Mencap has revealed fundamental failures in communication between care providers, on the one hand, and parents and carers, on the other, as the main cause. However, it has also concluded that the only other explanation for these preventable deaths is prejudice. The disturbing reality is that this prejudice, although rarely revealed in words, finds its expression in deeds, sins of omission and neglect. Any failure to understand what should be a fundamental tenet of NHS practice is shameful: every life is different, yet every life has the same value.

I want to take this opportunity to make the Government’s position clear. Mencap’s report, Death by Indifference, marked the start of six years of shocking revelations of inhumane and degrading treatment, culminating in the recent publication of the Confidential Inquiry into Premature Deaths of People with a Learning Disability. We established the confidential inquiry in 2010 and funded and supported it for three years. As Sir Jonathan Michael’s report, Healthcare for All, recommended, it was time limited. Its purpose was to provide evidence on the relevant issues and guidance on preventing premature deaths. It has done this very effectively and I thank the confidential inquiry team for its excellent work.

This important report reached the conclusion that people with learning disabilities are continuing to die or experience poor outcomes because they are not getting the right care, and noble Lords have cited some graphic and disturbing examples this afternoon. Although the report makes for sobering reading, it gives us a clear indicator of the areas that need to be tackled, preparing the ground for the Government’s response to the confidential inquiry which was published last Friday. Our response makes clear our determination to eradicate substandard practice and to work in partnership across the health and care system to deliver the improvements that we all want to see.

In our response, we set out a series of specific actions. We will use the information strategy for health and care to improve how we identify and respond to people with learning disabilities and their health and care needs. We will link data about cause of death with other information to better understand and respond to premature mortality among people with learning disabilities. We expect local organisations to use local mortality data to inform joint strategic needs assessments and joint health and well-being strategies. We will support named healthcare coordinators being available to people with learning disabilities. They will coordinate a person’s care, talk to other professionals and be involved in planning the individual’s care.

NHS England will review plans for learning disability annual health checks. We know that appropriate health checks can identify needs which can then be addressed by referral to appropriate services. We will try to strengthen the NHS standard contract to improve the care of people with learning disabilities. We know that the contract is a powerful lever to incentivise good practice. We will monitor, through the mandate, the progress the NHS is making to ensure that people with learning disabilities in vulnerable circumstances receive safe, appropriate, high-quality care all the time.

We will work with partners to review awareness and understanding of the Mental Capacity Act and how it works in practice in making sure that people receive appropriate care at all times, including at the end of life. We will work with partners to review guidance on cardiopulmonary resuscitation. NHS England will appoint a national clinical director for learning disabilities, who will help improve the experience of people with learning disabilities in care. Local areas can set up their own arrangements to review mortality in people with learning disabilities. Some are already doing so, working with the confidential inquiry team. This work will be shared more widely for other areas to develop similar approaches. Building a strong understanding of what is happening in local provision will be critical to making change happen.

Over all that, in the Health and Social Care Act, we have a new specific statutory duty on the Secretary of State, NHS England and clinical commissioning groups, with the aim of focusing on reducing inequalities throughout the health service in both access to services and outcomes achieved. This will be an enormously powerful tool in addressing the health inequalities which people with learning disabilities face.

However, the response to the confidential inquiry is just part of a programme of activity from government and partner organisations designed to deliver system change and a shift in culture and attitudes. Changes in health and social care delivered by the Health and Social Care Act 2012 provide the building blocks for that shift. First, safe, appropriate, high-quality care is a key priority for NHS England. The noble Lord, Lord Hunt, asked about the capacity of NHS England to focus in this area. It is under a specific legal duty to tackle inequalities and advance equality. Priority areas where we expect progress to be made by 2015 include supporting people with multiple long-term physical and mental health conditions and improving their quality of life, and preventing people from dying prematurely.

Secondly, the NHS Outcomes Framework 2013-14 will allow us to measure the quality of services and outcomes for people with learning disabilities. This framework includes an indicator on preventing people with learning disabilities from dying prematurely. Improvements for people with learning disabilities will also be a crucial element of success across the framework as a whole.

Thirdly, Transforming Care, our national response to Winterbourne View hospital, sets out a programme of actions to ensure that people with learning disabilities or autism no longer live inappropriately in hospital, and receive optimum care. A wide range of delivery partners signed up to a programme of action designed to deliver transformed care in the Winterbourne View review concordat. The concordat sets out a number of specific actions for NHS England, including ensuring that all primary care trusts develop registers of people with learning disabilities or autism who have mental health conditions or behaviour that challenges, and making clear to clinical commissioning groups that they are expected to maintain local registers and, with the local authority, review individuals’ care. All reviews will be completed by the end of July. By next April, every area will have a joint plan to ensure high-quality care and support in line with best practice. By next June, everyone will have moved to community-based support where appropriate.

Baroness Hollins Portrait Baroness Hollins
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I hope the noble Lord will forgive me. The Winterbourne View concordat does not address the physical health needs that we are talking about in this debate. I asked whether the Government might consider a similar concordat to look at the physical health needs of people with learning disabilities. Would the Minister care to comment?

Earl Howe Portrait Earl Howe
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My Lords, I would like to deal with some of the points raised in the debate. Can I say, as I always do, that if I fail to cover all the questions raised, I will of course write to noble Lords afterwards? On the issue of a concordat, which was raised also by my noble friend Lady Jolly, our response makes clear that we have already been able to take action in some areas—for example, by asking organisations to review and update guidance. In other areas, progress relies on several issues, such as new and emergent organisations developing their strategic approach, and key individuals being in post. Across all of the actions, there is a broad timescale with a commitment to provide regular updates on progress. The Department of Health will continue to review progress through the Learning Disability Programme Board.

On records, data and information we are working with the Health and Social Care Information Centre, NHS England and the Improving Health and Lives Learning Disability Observatory to address the issues. There are several areas we need to look at. For example, we know that there is already information in GP practice learning disability registers. We want to make better use of this by linking it to other data that is already collected. We will have an update on progress by the end of the year. I will write to supplement those comments because my time is running short.

My noble friend Lady Tyler asked what support the Government will give to local areas to implement the confidential inquiry recommendations. The department is working closely with the public health observatory to make sure that its work to share good practice includes the issues raised by the confidential inquiry. We have already suggested to the inquiry team that we need to work in partnership with NHS England and other stakeholders. To make progress on the actions we need to align with work that the inquiry team is already doing at a local and regional level.

The noble Baroness, Lady Hollins, asked when the outcomes framework indicator on premature deaths will be live. It is live from 2013-14. We are currently collecting data to underpin the indicator and we will have data by November of this year.

The national mortality review body was a subject raised by many noble Lords. The department and the confidential inquiry team organised a meeting in March to discuss the proposal for a mortality review body. I am aware that the noble Baroness, Lady Hollins, and other stakeholders with expert knowledge and interest attended that meeting. Our response confirms that NHS England will consider the proposal to establish a national mortality review body, including looking at the costs and benefits by March next year. Noble Lords expressed their concern about that timeline and I have no doubt that NHS England will take note of the strength of feeling expressed by noble Lords on this issue during today’s debate.

I have a lot more to say about liaison staff, the Mental Capacity Act, reasonable adjustments and other themes, not least those raised by the noble Baroness, Lady Emerton, on care pathways and the role of nurses. I will write on all of those issues. I want to end with a reassurance that people with learning disabilities and family carers remain at the heart of everything we do. The Government must lead by example. That is why the Learning Disability Programme Board includes learning-disability self-advocates and family carers as well as a self-advocate and the chief executive of Mencap. We have a long way to go but change must be effected at scale and pace. There can be no more excuses or procrastination from any part of the system if we are to achieve our collective goal of a society where everyone is valued and has the chance to lead productive and, most importantly, healthy lives.

Care Bill [HL]

Baroness Hollins Excerpts
Tuesday 16th July 2013

(11 years, 4 months ago)

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Lord Touhig Portrait Lord Touhig
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My Lords, I support Amendment 88Q, which was so powerfully moved by the noble Baroness, Lady Grey-Thompson. I certainly welcome the Government’s intention to establish national eligibility criteria, so that local councils across the country will be required to provide care for all those with a minimum level of need. However, I share the concerns which were so well articulated by the noble Baroness and the noble Lord, Lord Low of Dalston, that setting the fair access to care services criteria at “substantial” is simply plain wrong. It is wrong because it will exclude many people who I know with autism, and who have a low-level need of support. They will no longer be able to live independently if the level is set at substantial.

Setting the threshold at this level also seems to be running counter to the Government’s stated intention in the Bill, which is to focus on prevention. The requirement for people to have a physical or mental impairment to qualify for support could mean that those without a diagnosis will be excluded and miss out altogether. A great many people with autism do not get a diagnosis. I have been dealing with a case recently where people have been waiting four years to get their daughter diagnosed. I join the National Autistic Society—again, I declare an interest as a vice-president—in urging the Government to reconsider this and set the threshold at something equivalent to “moderate”. That is by far the fairest and best way to do it.

I make no apology for saying something which I think I have said about three times in this Committee: there is substantial evidence from the National Audit Office and NICE to indicate that investing in services for those with a moderate need is cost-effective. New economic modelling by Deloitte, published recently, shows that every £1 invested in support for people with autism and other disabilities who have moderate needs, generates a return across the piece of £1.30. That is not to be ignored and should be part of our consideration. There is much merit in this and I rather feel that the Minister, who is a decent and honourable man, will see that there is. I am sure he is going to give us some good news; at least, I hope he will.

Baroness Hollins Portrait Baroness Hollins
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My Lords, I would have added my name to this amendment because it is excellent and necessary. I, too, hope that the noble Earl will see the sense of it. Certainly, people’s fears that the Government would propose to set the national eligibility threshold too high have been confirmed. Rather than celebrating the achievements of councils that have been able to provide highly valued, innovative and low-cost services to people with low and moderate needs, we are instead to fall in line with the majority of local authorities, with the false hope of avoiding financial strain. Failing to provide services to people with moderate care needs is, at best, a missed opportunity to encourage preventive care and significantly improve the quality of life for a highly disadvantaged group of people. At worst, we are leaving a considerable proportion of people with a lifelong disability to fend for themselves.

Case reports of those recently excluded from receiving support are extremely troubling. We have heard some examples already today with some people losing all daycare provision and facing an isolated life at home. Other case reports demonstrate the importance of lower levels of support. I want briefly to give the example of Frances, a middle-aged woman with a mild to moderate learning disability who has always struggled to understand and manage bills. Since receiving a few hours support a week she has finally had relief from receiving constant threats and eviction notices. How long will her support survive before she is declared ineligible? Clearly the resources of the state are limited but they need to be used wisely, and I believe that our care system must encourage and incentivise local authorities to provide lower intensity interventions that can make a difference to the quality of life for many people.

On the face of it, opting for a moderate national eligibility threshold may sound as if it would require considerable additional funding, but providing these services to a group who by definition are often highly vulnerable and disadvantaged could result in great savings by avoiding more costly acute care later. I hope that the Government will rethink this amendment.

Baroness Greengross Portrait Baroness Greengross
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There are vast numbers of older people—for whom this Bill is designed, in terms of quantity—who we know want to stay in their own homes in their community. Early intervention can make that possible. If we delay, the alternative is crisis-driven. It leads to many older people going into expensive care homes where they do not want to be and from which they do not emerge again or into hospitals, adding to the problems we know about with frail elderly people. I very much hope the noble Earl will reconsider and enable people with moderate needs to have access to services.

Care Bill [HL]

Baroness Hollins Excerpts
Tuesday 9th July 2013

(11 years, 4 months ago)

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Baroness Hollins Portrait Baroness Hollins
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My Lords, I want to speak briefly in support of Amendment 82B, tabled my noble friend Lady Meacher, which emphasises the need to facilitate access to information and advice services relating to care and support. This is particularly the case for vulnerable adults such as people with learning disabilities. They may benefit from specialist facilitation to access such information. I should say that I chair a social enterprise which makes information on health and social care issues easier to understand for people who find written information too difficult. I am also the carer for an adult who currently receives care funded by the local authority, and who himself needs easy information.

I hope that the Minister will agree that my noble friend’s emphasis on facilitation will add necessary strength to Clause 4(4), which states that information,

“must be accessible to, and proportionate to the needs of, those for whom it is being provided”.

Without appropriate facilitation, the information may not achieve its objectives for those for whom it is provided unless it is done in the right way and in a timely fashion. Certainly, my own experience as a carer is that at the moment far too much information of the wrong kind is often provided, which is confusing. Facilitation is also about helping to choose the right information at the right time so that people can make good use of it.

Lord Rix Portrait Lord Rix
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My Lords, as we are approaching Statement time, I will be brief. I want to support the noble Baroness, Lady Browning, in her Amendment 88G, which advocates the need for advocacy. In the world of learning disability, advocacy is often totally essential. Information and advice which is not proportionate, frankly, can be quite useless. Advocacy may well come from parents and carers, but sometimes it can be the wrong advocacy. An independent advocate is essential to many people with a learning disability, so I wholly support this amendment.