Care Bill [HL]
Lord Touhig Excerpts(10 years, 9 months ago)
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Baroness Byford
My Lords, I have two amendments in this group. While the previous amendments have looked particularly at the risk of abuse to individuals, my amendments are to do with finance. I looked carefully through the Bill but did not see where they would fit and I therefore proposed that they be considered at this stage.
Amendment 92ZFA asks that an,
“investigation may be instigated following a complaint from a person with power of attorney for an adult having needs for care and support”.
My second amendment, Amendment 92ZFB, is an accountancy measure to ask that,
“care services shall have a duty to follow specific accounting guidelines”.
As we have heard, increasing numbers of elderly people require care and support, an increasing proportion of whom rely on someone who has power of attorney to act on their behalf, particularly in financial matters.
I am aware that a range of service providers, from banks to shops, from online businesses to public authorities, have difficulty when faced with one of these attorneys. A solicitor acting for the person in need of care sets up the power of attorney and holds all the certification. The person with the power is normally given a number of certified copies of the warrant to use in fulfilling the role. However, there seems to be conflict in the minds of many service suppliers between the need to comply with requests from the holder of power of attorney and the need to protect their original customer under the rules of the Data Protection Act. There was an example of a major chain which acknowledged a request to stop a credit/debit card and then, three years later, billed the customer for a three-year subscription. The warrant holder could not resolve the position because the enterprise would neither contact the solicitor direct nor accept a certified copy of the warrant. A number of letters and a great many telephone calls were used to remedy the situation. Then there was the example of the high street bank that lost two certified copies of a single warrant—to say nothing of the media company, the card protection company and a different bank, all of which have refused to deal with someone with power of attorney.
People in care suffering, for example, from dementia, rely heavily on those who act for them. Difficulties of the kind just outlined take a lot of time and effort to resolve. There is a high cost, too, which is particularly important when the warrant holder is neither being paid nor charging expenses. I am especially concerned about the plight of the spouses of those in care. They are often elderly, physically infirm and hard up. They are often unaccustomed to opposing the will of large organisations, nor do they necessarily know their way around officialdom. Warrant holders who are unrelated to the person in care have severe problems also, in that they may be ignored simply because they are no relation. Alternatively, how does someone with power of attorney cope with demands for family top-up fees from a care home where the managers will not accept that there is no family? Warrant holders have a statutory responsibility and must be scrupulous in their dealings. Businesses will not understand situations that create unnecessary difficulty.
My Amendment 92ZFB refers to care homes and fees. The Bill already concerns itself with the funding of care homes, and the Care Quality Commission has recently been given explicit responsibility to ensure that such homes have adequate funding to carry out their functions. My concern is with residents’ funding, to which I can find no reference in the Bill. Indeed, if I have missed it, the Minister will no doubt point me to it.
I have received complaints about how care home residents and those with power of attorney on behalf of such residents, are billed, bamboozled and in some cases bullied. Examples that I have been told about include over-invoicing which, when challenged, has resulted not in an apology and a credit note but a computer printout, without headings to any of the columns, and no possibility of agreement on the overdue balance. Requests for credit notes are ignored, and the resident or the person acting on their behalf cannot therefore maintain normal books. Mistakes by the local authority are visited upon residents in the form of extra charges that are not cancelled when the original error is corrected. The Care Quality Commission refuses to get involved, I understand, on the grounds that it has no duty to examine residents’ funding. The local authority had come upon similar problems before, but had no power to intervene. Board members of the newly constituted clinical commissioning group advised that the only thing to do was query the figures, ensure the local authority payments were up to date, and never give in.
It appears that the financial side of the care home business can be totally removed, physically and organisationally, from the home itself. No one has a duty to examine, audit or report on it. I feel that the Bill should carry that responsibility, and have a simple outline of the procedures to be followed to ensure accurate billing for services rendered, so that residents and their carers may be certain of their financial situation. At the moment it is unclear. I hope that the Minister’s response will clarify these situations, because in some cases those holding power of attorney are really at a loss to know how to resolve the situation.
Lord Touhig
My Lords, I speak in support of Amendment 92A, which stands in my name and that of the noble Baroness, Lady Greengross. The amendment concerns corporate responsibility for neglect. In speaking to this amendment, I acknowledge that the Bill introduces England’s first primary legislation to protect adults at risk of abuse and neglect. Similar legislation is in place in Scotland, and is in the process of being enacted in Wales.
The Bill as it stands places a duty on local authorities to investigate abuse or neglect, and introduces statutory requirements around safeguarding adults boards and safeguarding adults reviews. Substantive regulations on assessment and eligibility, published as secondary legislation, should also make provision to consider whether the person is at risk of abuse or neglect, and if this risk is sufficient to provide support.
I welcome the Government’s decision and the publication of a consultation on how to ensure that the directors of organisations are personally held to account. This may provide some redress, which our amendment seeks to secure. Given that this consultation closes in September, when the Minister responds to the amendment perhaps she could give some indication of when, in the latter stages of the Bill, the Government might decide whether they will enact some of these changes. The Government’s own consultation document acknowledges that there is a loophole in the system, allowing providers responsible for appalling failures in care to escape prosecution. This is what our amendment seeks to address. I am grateful to the noble Earl, Lord Howe, for writing to me about the Government’s consultation.
In south Wales, Operation Jasmine uncovered appalling treatment of older people in residential care. The police investigation into neglect of old people in care homes lasted more than seven years, and cost more than £11 million. Over 100 potential elderly victims were indentified; 75 police officers were involved in the inquiry, and more than 4,000 statements were taken. Yet the nursing home owner, a local GP, suffered brain damage during a violent burglary at his home in September 2012, and in March the court case against him, his company’s chief executive and their company collapsed. I understand that the company is still operating some care homes.
When I served in the other place, I saw for myself some terrible photographs of elderly people who had been neglected, and who had what I can only describe as holes in their bodies where bedsores had been left untreated. A number of people died, and the Commissioner for Older People in Wales, Sarah Rochira, said:
“I don't really know any other way of describing it other than a catalogue of failure”.
Detectives were unable to bring prosecutions for serious offences such as manslaughter and wilful neglect. The then-deputy chief constable of Gwent, Jeff Farrar, said:
“Where you are seeing people who have got pressure sores which are corroded down to the bone; people vomiting faeces they are so constipated; or so dehydrated, it is a significant cause of their death”.
Those responsible for this terrible degree of neglect should be brought to justice. At the moment they cannot be, and that is why we need an amendment of this sort. The Care Quality Commission’s report on Winterbourne View care home and the Equality and Human Rights Commission’s inquiry into home care also uncovered serious, systematic threats to the basic human rights of those receiving care services.
Amendment 92A seeks to strengthen protection by ensuring that registered providers of health and social care have duties, similar to those placed on local authorities, to report suspected abuse and to inform the safeguarding adults boards. Then, crucially, if abuse is found to have an element of corporate responsibility, where the systems or approaches taken by the care provider were a contributory factor in the abuse or neglect, a new offence is created, allowing prosecution of a registered care provider. This does not undermine the individual responsibility of staff members or the registered care provider, but would add corporate responsibility where a culture of neglect or abuse has been allowed to flourish.
People with Learning Disabilities: Health Inequalities
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Lord Touhig
My Lords, I refer the House to my interests as a vice-president of the National Autistic Society. I congratulate the noble Baroness, Lady Hollins, on securing this timely debate, coming, as she said, so soon after the publication of the Government’s response to the Confidential Inquiry into Premature Deaths of People with Learning Disabilities and just two days after the publication of this report from the Health Service Ombudsman, which I want to speak about.
I welcome this debate because it affords us the opportunity to debate the wider subject of health inequalities affecting people with a learning disability. The confidential inquiry is a crucial piece of work and shows that 37% of deaths could potentially have been avoided if good-quality healthcare had been provided. It is a terrible indictment of our care support system for the most vulnerable group of our fellow citizens, who are being let down. They and their carers often find it hard to express themselves in a way that might help prevent the tragic happenings that the inquiry has revealed. Like many noble Lords, I am aware that the support groups and those who work with people with learning disabilities have significant concerns about the Government’s response to the inquiry, a point well made by the noble Baroness, Lady Hollins. They feel that it is simply not strong and purposeful enough to really drive the change that we all wish to see.
On a wider point, a report from the Health Service Ombudsman, laid before Parliament on Tuesday this week following an investigation into a complaint against a GP practice, makes some pretty awful reading and should act as a wake-up call. It reveals how a GP service let down a young man with severe learning disabilities and it starkly draws into focus the attitudes that pervade in the system.
The young man is just 23. He has severe learning disabilities and behavioural problems, and he has epilepsy. He has historically been prescribed a series of medicines in liquid or dissolvable form because he becomes very distressed if he has to take tablets. One of the medicines was midazolam, used in emergencies if his epileptic seizures lasted beyond three minutes. In April 2011 his mother asked their GP for a repeat prescription in liquid form to help her son’s epilepsy. The GP refused her request because it was too expensive. He would only prescribe her son suppositories or tablets in future.
The mother advised the GP that her son had been prescribed only liquid medicine from a very young age, as his learning disabilities caused him to become very distressed if he had to swallow tablets. Despite this, the GP said he would no longer prescribe any of the young man's medicines in liquid form for cost reasons and would prescribe only tablets in future. The doctor told the mother to find a GP,
“‘who has bigger budgets’ and who would ‘be happy to prescribe the medications’”.
The mother was clear that the decision not to prescribe her son suitable medication put him at risk, including of death. However, when she subsequently complained to the GP practice about the doctor's decision, the response was far from understanding and helpful. She got a letter informing her that there had been a “total breakdown” in the doctor-patient relationship and advising her to find a new GP within 21 days as she and her son were to be removed from the practice’s list.
I can only ask noble Lords to imagine the significant distress that followed. The General Medical Council guidance is clear: doctors must ensure that prescribing of medicine is appropriate and responsible and in the patient’s best interests. The guidance also states that doctors should, when appropriate,
“establish the patient's priorities, preferences and concerns”,
and
“discuss other treatment options with the patient”.
After investigating the case, the ombudsman found that the GP had not given the young man the medication he needed on the grounds of cost, and had ignored disability discrimination law in the process. The ombudsman was clear in the report that the doctor,
“did not act in line with the Mental Capacity Act, GMC guidance and established good practice.”
The report found that the doctor,
“did not consider his responsibilities under the Mental Capacity Act in reaching his decision”,
about the young man's medication. He did not assess the young man’s,
“capacity to make a decision about his own treatments or medications. Nor did he take any of the required actions that could have led him to reach a ‘best interests’ decision”,
on the young man's medication.
The case shows a lack of understanding of reasonable adjustments and disability rights. Public bodies are required to comply with the Equality Act 2010, which includes the duty to make reasonable adjustments. They should also have regard to the various statutory codes of practice that have been published to assist in the interpretation of the legislation. The ombudsman’s report brings into sharp focus a specific case and uncovers the treatment that people with a learning disability and their families can face within the health service. The ombudsman, Julie Mellor, said:
“This is yet another case where someone with learning disabilities has been failed. When there are failures in the care and treatment of people with learning disabilities, there are consequences in terms of their health and in too many cases, their life expectancy.”
Unless the Government take strong action in this area, cases such as these will continue to occur. That is why I strongly support establishing a national mortality review body, which would allow for the collection of mortality data and, importantly, for investigations of specific cases, a point made by the noble Baroness, Lady Hollins. Critically, it would provide the opportunity to improve the understanding of the causes of premature deaths and enable the National Health Service to improve care for people with a learning disability.
The ombudsman’s report highlights a terrible wrong committed against a vulnerable young person. I hope that this Parliament and this Government will act to stop these awful and discriminatory cases occurring in future.
Care Bill [HL]
Lord Touhig Excerpts(10 years, 9 months ago)
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Lord Touhig
My Lords, I support Amendments 88M and 92ZZM in the name of the noble Lord, Lord Low of Dalston, and myself. Assessments must be carried out by assessors with the necessary training and expertise to understand the needs they are assessing. This point has been made time and again in this Chamber. The noble Lord, Lord Low, also referred to the Autism Act. The Department of Health has provided clear direction that autism training is essential for community assessors to ensure that the needs of adults with autism are fairly assessed. Here I declare an interest as a vice-president of the National Autistic Society. The noble Lord, Lord Low, also told us of the too few local authorities that have awareness training in place— 70 out of 152 local authorities have still not got a proper awareness training in place as part of their equality and diversity training.
Crucially, a National Autistic Society survey found that one in three social workers did not have a good understanding of autism. This is, in part, because adults with high-functioning autism or Asperger’s syndrome can have less obvious, hidden needs that can be hard to pick up in any assessment. That is why the assessor must have the necessary training and expertise. Failure to assess needs can mean that autistic people and others with disabilities are denied the support they need to live independently. As we all know, this makes it much more likely that in later life they will have a significantly greater need for support.
We are simply asking in these amendments to ensure that the needs of people with autism and other conditions are expertly and properly assessed. In that way, one can ensure that people will have a good quality of life—the sort that we in this Chamber take for granted. We are not asking for much and I hope that the Minister will agree with that.
Baroness Wilkins
My Lords, I strongly support this group of amendments. The consolidation of the care and support legislation into one Bill is very welcome but not if it lessens existing essential provision. As both noble Lords have clearly described, the initial assessment of someone’s needs is critical and must be carried out by someone who is appropriately qualified and understands the impact of the impairment and the types of support that are needed. As we have heard, the Bill does not provide the same requirement as the current statutory guidance. I therefore hope that the noble Earl will recognise the critical importance of specialist assessment for people in these groups and allay the concerns of organisations such as Sense and the RNIB.
Lord Rix
My Lords, the Minister knows perfectly well where I stand because I already talked about eligibility at Second Reading and in the debate last week on the future funding of health and social care, led by my noble friend Lord Patel. I was backed in that part of the debate on the question of someone having to reach a level of substantial disability before becoming eligible for care. It should be the right of all people with a disability at least to be assessed properly, from the lowest level of disability to the highest. A level may be set where tens of thousands of people are excluded, such as people with a learning disability. Many are already being excluded by local authorities and being denied the use of day centres, or whatever. I can only plead with the Minister to say something which would give a glow of optimism to all of us who are totally and utterly opposed to the level which the Government are likely to set.
Lord Touhig
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
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.
Earl Howe
My noble friend raises an important point, and I will take her suggestion away with me. As I mentioned earlier, however, a great deal of what this Bill will deliver is, so to speak, invisible to the naked eye, because it will ensure that those with lower needs will also be catered for in some way or another. I would like to hope that, for that reason, there will be less scope for challenge. I will write to my noble friend if I can supply her with our further thinking on that important topic.
I hope that what I have said will have reassured the Committee on these important matters. This has been a well informed debate. Our continued approach to engagement and consultation on the draft regulations will obviously allow us to consider many of these issues further, and on that basis I hope that noble Lords will not press their amendments.
Lord Touhig
Have the Government looked at the Deloitte economic modelling, which shows that support for moderate needs actually gives a greater return on the money invested? If not, will the Minister undertake to look at it before Report stage, so that we can discuss the savings that could be achieved?
Earl Howe
I know that my officials have looked closely at that modelling. I have not yet had an opportunity to look at it but undertake to do so. However, in all such matters a judgment is needed as to how money is best spent. No doubt there are good arguments for the Deloitte point of view, but, as I have already outlined, we think that if one has to spend money of that order, it is better spent in the way that we propose. Nevertheless, this is a debate that we can usefully continue, and I shall be happy to do that between now and Report, and also at Report stage itself.
Care Bill [HL]
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Lord Touhig
My Lords, I will be very brief in speaking in support of Amendment 88B. Certainly, I very much welcome the opportunity to improve access to the right support for young people with autism. I have met many young people with autism who have found that times of change, such as the transition from school to adulthood, are very challenging. It is the time when families need the appropriate planning and support to move from children’s services to adult services. In recent times I have talked to quite a few young people and their families who tell me that life at the time of transition, as they move from young people’s services to adult services, is like standing on a cliff edge.
The noble Baroness, Lady Browning, made a very powerful case that she articulated very well when she said that there would be considerable overlaps between this Bill and the Children and Families Bill. It is important that these two systems talk to each other. They must not operate in silos or we will never, as the noble Baroness, Lady Browning, said, ever get round the table and sort these things out. That makes common sense and I hope the Minister will recognise that—although, when I was growing up my mother used to say to me, “Son, in life, you will find that sense is not that common”. However, I hope that in this case it will prove to be and that the Government will see the reasonableness of these proposals.
Baroness Tyler of Enfield
My Lords, I add my support to Amendment 88B and point out that, while it is in the name of the noble Lord, Lord Tyler, on the Marshalled List, it should have my name attached to it.
Both my noble friend Lady Browning and the noble Lord, Lord Touhig, have presented a cogent case. I am not going to say anything other than it is important that we have properly co-ordinated arrangements for the transition process and the assessment as young people move between children’s and adult services. Certainly, like my noble friend Lady Browning, my experience is that far too often, in far too many cases, it is far from seamless.
I also support the three amendments to which the noble Baroness, Lady Meacher, has just spoken on young carers. The separation of adult and children services proves a real structural barrier, in my experience, to supporting young carers. Simply improving guidance and the other methods that have been tried before will not ensure the clear accountability that is needed for supporting the whole family. I know that the Minister has spoken before in Committee about the importance that the Government attach to the family approach—a view that I share—but a recent evaluation carried out by the Children’s Society found that the professionals involved believe that the law must be changed so that there are clearer levers for the provision of care and support in a way that sustains the whole family, and clearer lines of responsibility and accountability for both adult and children services.
We have discussed this both at Second Reading and in Committee. It needs a fully joined-up response and, while I understand and accept the Minister’s argument that most of the heavy lifting, if you like, in this area will be done in the Children and Families Bill, these amendments are needed in the Care Bill to ensure that adults’ needs are met sufficiently so that children and young people are protected from inappropriate caring, and that we have proper joining-up and co-ordination, not simply between services on the ground but between these two important pieces of legislation.
Care Bill [HL]
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Baroness Barker
My Lords, I declare an interest in that I work with a number of charities involved in the provision of information and advice about health and social care.
When I read this policy, it seemed to me that it reflected the practice of giving information and advice as it has been done for the past 20 years. I am not sure that that model of information and advice-giving is sustainable. It has depended largely on local bodies, many of which are in the voluntary sector and extremely professional in their services, but which provide a lot of generic, low-level advice. I do not think that that is sustainable—I was going to say in the longer term but, given the way that local authority budgets are going to have to decrease by a third by 2015, I do not think that this is sustainable in the short term either.
In future, there will increasingly be a move towards providing information digitally. New organisations and new social enterprises, such as IncomeMAX, are already heading down that path, and a number of local authorities are increasingly turning much of their provision over to that way of doing things. That is fine for people who are very well informed and who can access information in that format. What I cannot see is a sustainable funding model for the sort of high-level, complex financial advice that the noble Lord, Lord Lipsey, was talking about. This is necessary when people need to be enabled to go through the process of making decisions about, let us face it, the biggest asset that they have, which is their home. We are talking about something on an altogether different level.
We should also note that the system that we have had until now in terms of the provision of advice about social care was predicated on there being different eligibility criteria throughout the country. That is not going to be the case in future.
Like many noble Lords, over the past three or four years since Andrew Dilnot first appeared on our horizons, I have attended many seminars and lectures where people have tried to work their way around this problem. Two things strike me as being important. First, we cannot lay all the obligations on local authorities alone. At least in part, the NHS has to realise that it has to fund information and advice as part of the overall health and well-being package. I freely admit that I have yet to come across people in the NHS who truly understand the basic importance to health of information and advice. One of the first things that the department and the Government could do is to work on how we explain to commissioners in the health service why the outputs of information and advice services are important to them.
Secondly, we already know—the noble Baroness, Lady Greengross, and I know very well—that if you ask a group of older people who have assets what is the number one thing that they want, they say that they want independent financial advice. They do not believe that the people who sell them products are independent. They are right not to do so. That is a problem for the providers of those products. The only way of getting around this that might work is if, in future, some of those products have an element of money within them that is somehow passed into a pooled fund of money that comes from the private and statutory sectors and which can be put towards the provision of independent advice. That is not a worked-out idea, but it contains within it something of the ideas that the noble Baroness, Lady Greengross, mentioned, which are the key points in all of this. She is right that there is a need for regulated advice. I am not quite sure at which point a person needs that. Is that regulated advice something that they need before they come to a decision about which financial product to choose? The law that governs the regulations that exist at the moment usually comes into play when somebody decides to buy a particular product, so there is a real problem about when people have access to the right type of advice. The noble Baroness is on absolutely the right track. Somehow, in all of this, we need to arrive at a point at which resources are spent by people with the right knowledge and the right degree of independence to enable them to come to the right decisions.
Lord Touhig
My Lords, I rise to support Amendment 88G in the name of the noble Baronesses, Lady Browning and Lady Barker, and myself. It introduces a new clause which would ensure that there is a duty to provide independent advocacy.
The right to advocacy is essential to enable people who find it hardest to communicate to exercise their rights; who find it difficult sometimes to represent their interests, and therefore obtain the services that they need. I spent just over 15 years serving in the other place and, throughout that time, I remember many people coming to my surgery who wanted advice and help. In many instances, they also wanted an advocate—someone who would put their case strongly and make sure that their voice was heard.
Reference has already been made to the Autism and Ageing Commission whose report was published today. It was chaired by the noble Baroness, Lady Greengross. I sat on that commission and it brought home to me again the importance of advocacy. I recall a lady called Clare Beswick, whose brother is autistic and has learning difficulties. She said:
“A best interest decision was made that Paul should live closer to me in the south east … I had to go to extraordinary lengths to enable Paul’s needs to be met … without my support, advocacy and intervention, I believe Paul would never have had the opportunity to be moved to be near us”.
That is the importance of an advocate.
I declare an interest as a vice-president of the National Autistic Society. The society’s survey in 2012 found that 66% of respondents over the age of 50 had not had their needs assessed since they were 18. Independent advocacy could make a real difference to these people by helping them to access an assessment and ensure that it is fair and accurate in relation to their needs. Of course, from the point of view of autism, advocates must have training in the condition so that they can interpret questions effectively and help individuals who have difficulties communicating.
People with autism do not self-present. Autism is about a lack of the communication skills that we in this Chamber take for granted. If the Government were to take on board this new clause, I can simply say to the noble Earl that it would represent a major leap forward for people who need strong advocate support.
Care Bill [HL]
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Baroness Greengross
My Lords, I will also speak to my Amendments 79C, 79G and 79K.
Amendment 78C is about trying to strengthen the provisions to ensure that we have an integrated approach to care planning. This would happen if we could ensure that local authorities consider how to prevent or delay healthcare needs, as well as care and support needs, when providing or arranging the provision of services, facilities or resources for care. We have talked about this previously but I think that the Bill should require local authorities to have regard to the potential to prevent, delay or reduce health needs as well as care needs when providing or arranging care and support services. This duty would have wider benefits because it would strengthen the requirements on local authorities to prioritise integrated care services in line with Clause 3 of the Bill. It should also improve cost efficiencies for local authority budgets at a time when social care budgets are being squeezed, as we have heard, by reducing the need for more intensive and costly forms of care.
Similarly, Amendment 79K tries to enshrine the duty of prevention. We know, and have heard from other noble Lords, that many people reach a crisis point when the person for whom they are caring is critically ill, or has a fall, or the partner dies, or something else happens. There is a panic and the wrong sort of care or very expensive acute care is provided. If appropriate identification, awareness and assessment of needs could be made before people reach this point, it would be absolutely brilliant at avoiding some of these acute costs of care. Enshrining prevention in the Bill is very important. Accordingly, it is imperative to ensure that the prevention duty focuses on what a local authority must do to prevent deterioration in well-being, to underpin the imperative to prevent, delay and reduce the need for care and support.
In order to make sure that happens, Amendment 80B ensures that local authorities have regard to NICE clinical guidelines and equality standards. This came to me through chairing a committee which produced a report on autism as it now affects a lot of older people. This is a fairly new phenomenon, because fortunately people live longer—not just healthy people, not just sick people, not just frail people, but people who have conditions such as autism. We know that NICE’s remit will be extended—in fact it has been extended since April of this year—to include social care services. It has the potential for a new focus on evidence-based decision-making. For example, the NICE guidelines on adults with autism states that investing in employment support is cost-effective.
This, and similar findings, should be taken into account by local authorities when they are providing services, including preventive services. All of these together would help to provide a range of preventive care. In order to make that happen, I hope we can encourage local authorities to look at more than one-year budgeting, because preventive services need longer than that. Local authorities need to be encouraged to take a longer view. If you are running a business and invest in something, you do not expect a return immediately. If you invest in preventive services, you will not necessarily get a return in one year, you have to give things a longer time span to reap the benefits. That also applies in these cases.
Amendment 87G makes sure that local authorities assess preventable needs and look to reduce these needs as an integral part of their duties in relation to the assessment progress. Briefly, that explains this group of amendments. I beg to move.
Lord Touhig
My Lords, I speak in support of Amendments 79K, 80A, 80B and 87G. At the outset, I pay tribute to the noble Baroness, Lady Greengross, who did an excellent job in chairing the commission on ageing and autism. We look forward to the publication of the report very shortly. It was certainly an eye-opener for a great many of us, and the many who thought they knew a lot about support and social care learnt a great deal during that time.
Autism
Lord Touhig Excerpts(10 years, 10 months ago)
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Lord Touhig
To ask Her Majesty’s Government what assessment they have made of the findings of the campaign by the National Autistic Society, Push for Action, launched on 14 May. I declare an interest as vice-president of the National Autistic Society.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, the National Autistic Society’s Push for Action campaign coincides with the Government’s review of the 2010 adult autism strategy. We are already taking forward some of the campaign’s recommendations, and we will consider others that fall to government during the review, the investigative stage of which is due to last until the end of October.
Lord Touhig
I must say that I am encouraged by the Minister’s words. Four years after Parliament passed the groundbreaking Autism Act, this National Autistic Society report reveals that despite some progress far too many autistic adults are missing out on everyday support. A shocking 70% of adults and their carers say they get no help from social services, and this is not always down to money. Indeed, economic modelling by Deloitte shows that every pound invested in services for autistic adults with moderate needs brings a return of £1.30. When the Government review the autism strategy, will they consider providing an innovation fund so that local councils can provide the cost-effective services that all autistic adults need and actually demand?
Earl Howe
My Lords, we will certainly consider the idea of an innovation fund during the course of the review. We have allocated some central funding already to support the implementation of the autism strategy, for example in commissioning a range of training products from expert bodies to support local areas and professionals. I hope the noble Lord will agree that the strategy and the statutory guidance that goes with it mark a great step forward for adults with autism in England. We now need to take an honest look at how it is all working and come up with further ideas and actions as necessary.
Care Bill [HL]
Lord Touhig Excerpts(10 years, 11 months ago)
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Lord Willis of Knaresborough
My Lords, I shall speak to Amendments 26 and 33. Like the noble Baroness, Lady Emerton, I also emphasise the importance of Amendment 19. While it is a rather small amendment, it has huge significance.
Talking to people from Health Education England recently, I was struck by the desire in the Francis report about the whole issue of practical training. When a significant amount of the training of medics, doctors and nurses is carried out in practical situations, one asks how you can get the sort of situations that the noble Lord, Lord Hunt, referred to. When nurses spend 50% of their time in practical situations, how do they come out of their training not ready to be deployed in certain areas? To be fair, when you see the time and the effort that is put into mentoring in many of these settings and the quality of that mentoring, you start to realise that there is a big problem. I hope that on Report we can bring back some of the issues relating to mentoring, or at least get some satisfaction from the Minister that this issue will be taken incredibly seriously in health education. If it is not, we will continue to have people who in theory are trained well but in practical terms are really not as fit for purpose as they should be. That will not be their fault; it will be our fault.
Amendment 26 very much echoes the thoughts behind Amendment 27. I particularly welcome in Amendment 27 the idea of having a 10-year plan. In fact, five years is short-term. It is better than what we have at the moment, but a 10-year plan is a really good idea, and I am sorry that I did not table that amendment. I saw it but thought that we would not want two amendments along the same lines.
On Amendment 26, Clause 85(1) of the Care Bill defines Health Education England’s responsibility as ensuring that,
“a sufficient number of persons with the skills and training to work as health care workers for the purposes of the health service is available to do so throughout England”.
Who could disagree with that? What a noble suggestion. While that would clearly include both healthcare support workers and nurses, the mandate, which was helpfully provided by the Minister before this debate, sets out a strategic national role in relation to medicine, dentistry and pharmacy in paragraph 5.2.6, and proposes a five-year workforce plan for “smaller specialties and professions” in paragraph 5.2.7, but provides little information on how the nursing workforce or the healthcare support workforce is to be undertaken and implemented. Does that not tell us all we need to know about what the priorities still are? While we have good words within the Bill, we do not have anything within the mandate that backs them up in a real sense. Midwives and health visitors suddenly appear, but I think that the commitment to having a comprehensive workforce under a five-year plan is worth really striving for.
Amendment 33 looks at the future guidance and standards for safe levels of staffing. I have a real problem with allocating numbers. When I was in another place, I remember arguing with the then Government about class sizes for years 1 and 2 in primary schools, where there had to be 30 children or fewer and the 31st child had to go somewhere else. You realise that, depending on the setting, you can do all sorts of different things. What we must not do is tie down the hands of high-quality management in being able to deploy staff in the most appropriate way. What matters is getting the mix of staff absolutely right. I hope that we will return to the question of staffing levels because it is fundamental but, frankly, we could go down the wrong road if we took it too seriously.
Lord Touhig
My Lords, time and again in this House the matter of training of health professionals so that they better understand how to support and care for people with autism has been debated. Here, I should declare an interest as a vice-president of the National Autistic Society. We know that key professionals such as GPs and community care assessors still do not have a good enough understanding of autism.
Amendment 24, about which the noble Lord, Lord Rix, has spoken and to which I have added my name in support, if taken on board by the Government would at least ensure that the Secretary of State would be required to consult vulnerable people, including those with autism, their carers and groups such as the National Autistic Society, Mencap and others on matters affecting education and training that will be provided by Health Education England.
Only one in three adults with autism in this country told the National Autistic Society in a survey that in their experience social workers have a good understanding of autism. There is a well established correlation between the professionals’ understanding of autism and the degree of identification of needs among adults in that local authority area with the condition. Autism training can help ensure that adults with autism are correctly identified, and qualify for the support they need.
I recently served on the autism and aging commission, chaired by the noble Baroness, Lady Greengross. Professor Francesca Happé gave evidence about the difficulties of picking up on autistic people’s needs. She said:
“This is a group that doesn’t self-present, doesn’t come and seek services, because of their difficulties of social interaction and communication and we absolutely owe it to them to go and find out what their needs are”.
For that reason, we need well trained people to support them.
The National Autistic Society’s excellent document, Push for Action: We Need to Turn the Autism Act into Action, made a very good case. It includes a very good case study by the mother of an adult with autism. Her name is Chloe, and she says:
“We got to the point where Peter couldn’t live at home, for his own and our safety. After moving around between people he knew and staying in a B&B, eventually he got a flat but he still doesn’t get any support. Social services don’t understand autism and how it affects him. They’re not asking the right questions. They say, ‘How are you?’, and he says, ‘I’m fine’, so they come back to me and say, ‘He’s fine, he doesn’t need any help’. But of course he says he’s fine at that point because he probably is at that point”.
He does not trust them, so he says he is fine in order to make them go away because he does not believe that they understand or are able to help him.
“He had a mental capacity assessment and they asked him about managing his money. He told them that he was saving money for a motorbike but he doesn’t have any money. He can’t manage his money. He gets into all sorts of trouble”.
Chloe concludes:
“I’ve given up asking for support. Me and my husband now do everything ourselves … Now we have no expectations of what ‘services’ should be providing”.
That is just one example of the lack of trained staff having an adverse impact on the life of an autistic person and their family.
I hope the Government will ensure that autism training is included in the core curricula for doctors, nurses and other clinicians, in accordance with the commitments under the Adult Autism Strategy. It is absolutely necessary that vulnerable groups, including people with autism, are consulted about priorities for training so that decision-makers become aware of the gaps in knowledge and understanding among health professionals.
Ultimately, the Government must tackle the issue by including autism training in the core curricula for doctors, nurses and other clinicians, as they committed to do in the 2010 Adult Autism Strategy. People with a learning disability and/or autism have the right to the same quality of healthcare as those without. I believe that Amendment 24 is a good step forward in achieving that.
Earl Howe
My Lords, I will deal briefly with two of the amendments in this group. I will deal first with Amendment 11, which was tabled by the noble Lord, Lord Hunt. The explanation for this provision in the Bill is essentially that it is a safety net to enable an extension of HEE’s activities in future, and to ensure that this has the Secretary of State’s prior consent. HEE can carry out other activities relating to the education and training of healthcare workers, or relating to the provision of information and advice on careers in the health service. However, we believe that to avoid undue mission creep it is perhaps advisable for the Secretary of State to be content that Health Education England is branching out in new directions.
Regarding Amendment 32A and the issue of end-of-life care, Health Education England will indeed support NHS England where it can in implementing its end-of-life care strategy, and the way that it shapes and reforms education and training.
Carers
Lord Touhig Excerpts(11 years, 3 months ago)
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Lord Touhig
To ask Her Majesty’s Government what is their estimate of the saving to public funds as a result of the work of unpaid carers in the United Kingdom.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, the Government themselves have not estimated savings to public funds as a result of unpaid carers’ contribution to care and support, although we are aware of estimates by other organisations. There is scope for debate about how best to put a financial value on this care but there can be no doubt about its huge value to those who receive care and to the wider community.
Lord Touhig
My Lords, I am sure that the Minister would agree that we owe a great debt to the carers of this country and, indeed, the Government recognise that because they have promised that families with a disabled child and in receipt of disability living allowance will be exempt from the housing benefit cap. However, according to the regulations, when that disabled child becomes a disabled adult, the child is considered to be a separate household from the parents who they live with. No matter that the disabled adult will perhaps need the same level of care that they received as a disabled child; the parents will then be subject to the housing benefit cap. Why?
Earl Howe
My Lords, the noble Lord will have to forgive me because I will need to write to him about benefits, which do not directly fall under my remit in the Department of Health. However, I can say to him that more young carers services are extending their age group to cover young adult carers, and there needs to be a proper join-up between the two. In some situations, it is true that the young adults’ needs are unmet; they can fall down the gap and not receive adequate support. A transition between children’s services and adult services should be smoother—we acknowledge that, and we are addressing this in the draft Care and Support Bill.
Autism
Lord Touhig Excerpts(11 years, 5 months ago)
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Lord Touhig
To ask Her Majesty’s Government what will be the scope of the review of the national adult autism strategy, due to take place in 2013.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, we are currently considering how to deliver the 2013 review of the adult autism strategy and, in particular, a range of options about how best to secure the views of service users and carers. The review, which will take place from April to October next year, is an opportunity for the Government to take stock and consider where future action is required to realise the vision of fulfilled and rewarding lives for people with autism.
Lord Touhig
My Lords, the National Audit Office report on the adult autism strategy said that the health service needed to improve the training of key professionals who make decisions about a person’s eligibility for benefits and services. Can the Minister confirm that the review will ensure that all government departments will implement the strategy in full, so that autistic adults around the country can access the support services that they need?
Earl Howe
My Lords, this matter runs across government departments. While central government can set the framework, and while it can work to remove barriers and increase awareness, which is very important, the real work—the delivery of lasting change—is for professionals, providers, voluntary organisations and, indeed, service users working together in collaboration. That effort needs to take place at a local level, which is why there is statutory guidance to prompt that action.