Learning Disabilities: Premature Deaths
Baroness Browning Excerpts(10 years, 3 months ago)
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Earl Howe
My Lords, the noble Lord makes a good point. Following the recommendations of the UK review of learning disabilities nursing, we have set up an independent collaborative to address that workforce’s needs. We are also working with Health Education England’s 13 local education training boards to develop greater links with the independent and voluntary sector which will help with workforce planning. This year Health Education England increased its national commissions for student learning disability nurses by 4.5%. We are working on a number of initiatives to raise the profile of learning disabilities nursing and promote the profession as an attractive career choice.
Baroness Browning (Con)
The report identifies 37% of deaths that could have been prevented. People with learning disabilities and those on the autistic spectrum, some of whom are included in the report, experience communication problems at hospital level. Will my noble friend please put government force behind the issuing of hospital passports for people with learning disabilities and those with autism? The autism hospital passport was launched two weeks ago and is on the NAS website. However, these very important documents can help to prevent death only if clinicians and hospital staff read them, take note of them and act on them.
Earl Howe
I take my noble friend’s point. The specific needs of people with learning disabilities are being considered as part of the overall work programme to provide people with online access to their GP practice and GP-held e-record. That is being done in the wider context of the development of a fully comprehensive patient-held record. NHS England plans to hold a meeting later this year to look at developing a national standard for a hospital passport. This will be a patient-held document that will detail key information to be shared with any contact in the NHS.
Care Bill [HL]
Baroness Browning Excerpts(11 years, 3 months ago)
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Baroness Browning
My Lords, this is something of a miscellaneous group of amendments. I wish to speak to Amendment 105Q standing in my name and that of the noble Lord, Lord Touhig. I also refer the Committee to my interests in the register as far as autism charities are concerned.
This Bill must ensure that the duties set out in the statutory guidance under the Autism Act 2009 continue to apply to local authorities and local NHS bodies in order to ensure the ongoing implementation of the Act, which remains England’s only disability-specific legislation. The Act led to the publication of the adult autism strategy and the accompanying statutory guidance. When the Bill went through the House—I was on the committee when it went through another place—great play was made by the Minister of the importance of statutory guidance rather than having certain things on the face of the Bill. Ministers therefore have a responsibility to ensure that it is complied with. The guidance commits the Government, local authorities, local NHS bodies and other stakeholders to take action to improve the lives of adults with autism across England. This year, the Department of Health will undertake a statutory review of the strategy. This amendment seeks to ensure that the statutory guidance resulting from the Autism Act is embedded in the new legislation and that nothing that currently gives protection to people with autistic spectrum disorders slips through the net.
Lord Low of Dalston
My Lords, I shall speak more briefly, your Lordships will be pleased to learn, than I have in any of the debates we have held so far in Committee. I wish to speak to Amendment 105R. This is a probing amendment designed to seek clarification as to the meaning of Clause 72. The clause gives local authorities power to delegate some of their functions to other care providers. This raises the question of whether care provided under such delegated authority should be regarded as arranged by a public authority and therefore subject to the Human Rights Act. Clause 72(6) states that:
“Anything done or omitted to be done by a person authorised under this section … is to be treated … as done or omitted … by … the local authority.”.
This means that the local authority remains bound notwithstanding any delegation of its functions. But the Joint Committee on the draft Care and Support Bill recommended that the clause should be amended to state that the person with delegated authority is also subject to the same legal obligations as the local authority itself. It is argued that this should include obligations under the Equality Act 2010, the Human Rights Act 1998 and the Freedom of Information Act 2000. However, subsection (7)(a) puts the whole matter in doubt by providing that this does not apply,
“for the purposes of the terms of any contract between the authorised person and the local authority which relate to the function”.
The amendment seeks clarification as to what this means and an assurance that not only local authorities but also those who provide care under these arrangements will be treated as public authorities for the purposes of the Human Rights Act and other legislation.
People with Learning Disabilities: Health Inequalities
Baroness Browning Excerpts(11 years, 3 months ago)
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Baroness Browning
My Lords, I refer the House to my registered interests regarding disability and health and I congratulate the noble Baroness, Lady Hollins, for bringing this very important debate to the Floor of the House.
I begin with the part of the report that deals with annual health checks. Such checks for people with learning disabilities are an excellent way for doctors to pick up early even more serious problems than the patients themselves realise they have or are able to articulate. In some cases, if a person is not medicated, it could be the only time in a year when a GP sits face to face with them.
Linking the health check with health action plans is extremely important. The regular screenings that the rest of the population almost take for granted—because we are reminded that we are due a certain screening and we welcome this preventive and early opportunity to check whether there is a problem—is something that people with learning disabilities may lose out on because, when a letter arrives telling them it is time to phone for an appointment for a particular screening, they may simply throw away the letter and never have the screening. The annual health check therefore provides that opportunity.
The confidential inquiry found that the weakest link in the chain of the care pathway for people with learning disabilities was problems with diagnosis. It is very easy to misinterpret or ignore something from someone who is unable to articulate their symptoms or pain. I believe that it is key that the annual health check is expanded beyond its current very useful functions to ensure that it is used to provide a much more comprehensive look at, and a holistic approach to, that person’s health. The Government have accepted that there is inequality in healthcare investigations. They have detailed how NHS England will address this through working with clinical commissioning groups, and I understand that they will set out the details later in the year. That will be a crucial piece of work, which I hope will include tangible and measurable objectives on improving investigations that lead to diagnosis.
For people with learning disabilities in particular, and—the House will not be surprised to hear me say—for those on the autistic spectrum, many of whom also have learning disabilities, communication is a major issue. It is important for primary care services to understand the patient; if that person needs to attend a GP or nurse appointment accompanied by someone who can interpret their mood, behaviour and articulation, the primary care services must take into account that this can be quite painstaking and time-consuming. If people with a learning disability are to be treated equally, it is very important that the primary care service, and the services in hospitals when investigations often take place, allow for the fact that there may need to be a person in support who will help the clinicians to interpret how the other person is feeling.
I turn now to the part of the report that deals with the Mental Capacity Act. A number of reports, including the Confidential Inquiry into Premature Deaths of People with Learning Disabilities and the Francis report, have identified problems with how the Mental Capacity Act is understood and applied. They identified the lack of compliant practice with the Act as a barrier to effective NHS care. The inquiry found evidence of disagreement about what professionals understood by “serious medical treatment” and thus a lack of consistency about appointing independent mental capacity advocates to support those without family members to represent their views. There has also been evidence of unlawful NHS practice.
Declaring an interest as a mother, I add at this point that it is not just people without relatives to speak up for them who are not always listened to. In that shocking report from Mencap, Death by Indifference, which the noble Baroness mentioned, and reports that have followed on from the original report, we have seen the deaths of young people whose mothers have stood by their bedside and tried to explain the symptoms of their adult children to clinical staff, only to be told, “He’s over 18 and he hasn’t expressed his wishes in that way”. There is no other word for it but wicked.
So what are the Government pledging to do? The Department of Health has apparently agreed that mental capacity advice should be available 24 hours a day. It said:
“There should be staff trained in the MCA available 24 hours a day, and there should be specialist advice available in all care settings”.
It also says:
“Service providers have the primary responsibility for ensuring existing staff have the required knowledge and awareness of the MCA … The responsibility for the content of education and training curricula … lies with”,
Health Education England and,
“the professional regulators and the appropriate Royal Colleges”.
As a member of the Select Committee in this House that is currently looking at the post-legislative scrutiny on the Mental Capacity Act, I was somewhat concerned, when we took evidence at our first session on 18 June, that we were told by Department of Health officials when asked about the ability to assess for mental capacity,
“the assessment revealed an inconsistency in assessing capacity in some trusts to ensure that the Act was fully embedded”.
Claire Crawley, who spoke on behalf of the Department of Health, said:
“In terms of hard evidence, could I sit here and say, ‘I absolutely know that every local authority has appropriate plans and training processes in place’? I could not say that because I have no way of getting that evidence. The regulator of the industry, as it were, the Care Quality Commission, does not monitor local authorities or inspect them any more, so I would not know”.
Very often the local authority appoints the person who has the day-to-day care for the patient, so local authorities are as much involved in this as the NHS. When pressed by the noble Baroness, Lady Andrews, about the position of NHS trusts with regard to assessment of capacity was concerned, Claire Crawley told us:
“That would probably have been the CQC’s process … rather than the department’s process”.
I say to my noble friend that when a department, particularly the Department of Health, puts a piece of legislation such as the Mental Capacity Act on the statute book, it has a duty and responsibility to ensure that it is complied with, particularly for this vulnerable group of people. It is simply not good enough to say, “Not me, guv, it’s somebody else’s responsibility”.
Care Bill [HL]
Baroness Browning Excerpts(11 years, 3 months ago)
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Baroness Browning
My Lords, I will speak to two amendments in this group: first, Amendment 92ZZK in my name and those of the noble Lord, Lord Touhig, and the noble Baroness, Lady Tyler of Enfield. This is very similar to an amendment that I tabled to an earlier part of the Bill, and it focuses in particular on transition:
“In preparing a care and support plan, the local authority must have regard to the young person’s education, health and care plan, where such a plan exists, and integrate the care and support plan with the existing education, health and care plan”.
I will not repeat what I said earlier, but this certainly applies to this clause because the integration is very important. This amendment is supported by the Care and Support Alliance, and particularly affects young people who are coming from adolescence into adulthood, where the seamlessness of their care package is very important. As I mentioned in moving the earlier amendment, this has, of course, a read-across into other legislation. I know that my noble friend gave me a reassurance last time, but it is important that the Bill requires that double-banking, if you like, to make sure that there is joined-up government here between not just two government departments but two plans that affect an individual’s future.
I also briefly raise the question of a probing amendment—Amendment 92ZZGA, in the name of the noble Baroness, Lady Emerton. In Clause 25(1)(e) the amendment seeks to change the words,
“includes the personal budget for the adult concerned”,
to “can include”. What has concerned the noble Baroness, Lady Emerton, here is that, although there may well be sanction for a personal budget for the adult concerned, the impression given by this particular wording is that it could possibly constrain the choice as to how that personal budget was spent. I appreciate that the care plan or the support plan would identify that sanction had been given for a personal budget. However, it is very important that it in no way presumes the choices in a prescriptive way that would take away from the individual concerned what is at the very heart of personal budgets—the right to choose services and items, which might well be something that they have a preference for and on which the local authority should not get too much into the detail, having sanctioned the personal budget in the first place. It would be helpful, when my noble friend responds, if he could give some reassurance on that matter.
Lord Dubs
My Lords, I shall speak to two amendments in this group, both of them amendments to Clause 25 —Amendments 92ZZH and 92ZZJ. I must say that I do struggle with all these initials; they make it hard to spot which amendment is which—but it may be that there is no better way of doing it.
Amendment 92ZZH is about people who have fluctuating needs for support because their condition is not constant. A fluctuating condition is a chronic condition, physical or mental, of which a characteristic feature is a significant variation in the overall pattern of ill health and/or disability. There are many millions of people in the UK with fluctuating conditions. Those could include MS—I am an officer of the All-Party Group for Multiple Sclerosis—rheumatoid arthritis, HIV, Crohn’s disease and colitis, epilepsy and Parkinson’s disease; there may also be others. Those conditions cover a large number of people.
The problem is that when people have fluctuating conditions it will be much harder to plan ahead on the basis of the present drafting of Clause 25. There is not the flexibility to enable account to be taken of the ups and downs associated with fluctuating conditions. If the plan could take account of fluctuating conditions, individuals could be assured that they would get the level of care they needed, consistent with the fluctuations in their condition. By allowing for that, we can also prevent costly hospital admissions. That in itself is an important aim both for the well-being of the person concerned and, in terms of cost, for the health service.
For example, a snapshot survey of individuals showed that 30% of respondents with rheumatoid arthritis had been admitted to emergency care as a result of a flare-up of the disease in the past year—of which, of course, no account is taken by the Bill. The benefit of my suggestion is that it would make it possible to plan ahead for variations in care and support, in advance of those variations being required.
Amendment 92ZZJ is about the period over which care will be made available before the need is reviewed. The current wording of Clause 27 gives local authorities the power to,
“keep under review generally care and support plans”.
“Generally” is an all-purpose word which can mean anything. Local authorities are not required to specify when they expect such reviews to take place. Anyone who is subject to something “generally” lives in uncertainty, and what I would like to achieve with my amendment is some element of certainty.
The key benefit of the care and support planning process would be to allow a discussion between the local authority and the person concerned about the best way their care needs could be met. Then there could be an agreement between the local authority and the adult or carer. It is important for such an adult to be confident that their care will remain consistent until their circumstances change. Under my amendment they would not be subject to an early review if there was no need for it, but when things happened, that could be reflected in their care plan. The amendment would give that adult the confidence that their care would continue as agreed until the specified date, or until the adult himself or herself chose to request a review in line with Clause 27(1)(b). That may seem a small change but it would be important to the individuals affected.
Earl Howe
My Lords, I thank all those who have contributed to the debate on an issue which is crucial to the Government’s vision for a personalised care and support system—the care planning process.
In relation to Amendment 92ZZCA, I hope I can reassure the noble Baroness, Lady Greengross, that it is already the case in the Bill—the Explanatory Notes make this clear—that where the adult lacks capacity to make a request, it may be made by someone else on their behalf. This is the effect of the Mental Capacity Act 2005. It is not necessary to set this out in legislation each time. We will also make this clear in guidance. Condition 3 in Clause 18(4) imposes a duty on the local authority to meet needs in cases where the adult lacks capacity and has no one to arrange care on their behalf. This is an additional safety net, enacting a provision previously set out in guidance.
On Amendment 92ZZEC from the noble Baroness, Lady Wheeler, it is vital that local authorities retain the ability to be proportionate to the needs to be met. For some people the care planning process may be relatively simple and therefore can occur relatively quickly, but that may not be the case for people with multiple complex needs. As we discussed earlier, there may be a need for experts to be engaged in some cases, and this should not be overlooked in order to meet a centralised target. Introducing a defined timescale may also have the unintended consequence of some plans being rushed in order to meet the deadline, or even introduce gaming into the completion of care plans. I hope that the Committee will agree that this does not fit very well with our vision of a personalised care and support system.
We will work with stakeholders to set out best practice for conducting care and support plans in guidance. This will include indicative but not definitive timescales for care plans. Amendments 92ZZG, 92ZZP and 92ZZQ in the name of the noble Baroness, Lady Wheeler, raise the issue of specifying health needs in the care plan. The Bill creates a clear legal framework to enable such integration to happen in practice. However, it is not for the local authority to specify in the care plan which needs the NHS should meet. Clause 25 requires local authorities to involve the adult and carer, and take all reasonable steps to agree the plan with them, which would include whether to refer to any health needs.
In relation to Amendment 92ZZGA in the name of the noble Baroness, Lady Emerton, we believe that everyone should receive a personal budget as part of their care plan to ensure individuals are made aware of the cost of their care and the contributions both they and the local authority need to make. Giving local authorities discretion on whether to provide a personal budget would undermine our aim of giving people more choice and control over their care and support. Removing this duty will also affect the ability of the local authority and adult to track progress towards the care cap. I realise—at least I hope I realise—that the amendment was a probing one.
Baroness Browning
I think the concern of the noble Baroness, Lady Emerton, was not about the discretion over whether or not to give the budget, but about discretion over how that budget should be spent. I think that she was concerned that the personal budget, if it were put into the plan in a certain format, might start to prescribe how the budget was spent. That, I think, is what she was concerned about and why she suggested the change of wording.
Earl Howe
I am very grateful to my noble friend and I think I had better reflect further in the light of those comments.
I completely agree with the noble Lord, Lord Dubs, in relation to Amendments 92ZZH and 92ZZJ, that a modern, comprehensive care and support system should be able swiftly and effectively to respond to changing patterns of need. But the issue of fluctuating or emergency needs and anticipated review dates should be left to the local authority and the adult to discuss and agree when going through the care and support planning process. Again, we will consider these matters when producing statutory guidance with partners.
I turn to Amendment 92ZZK in the name of my noble friend Lady Browning. As I have indicated previously, the transition of children to adult care and links between this Bill and the Children and Families Bill merit further consideration and will be discussed at a later date. But I share my noble friend’s expectation. Where an adult has an education health and care plan, their care and support needs assessment and plan should be integrated with it. Both the guidance supporting the Care Bill and the SEN code of practice will set out how we expect this to work.
I turn to Amendments 92ZZLA and 92ZZQA in the name of the noble Baroness, Lady Greengross. The Bill is intentionally very clear that the personal budget and independent personal budget must be the cost to the local authority of meeting the adult’s needs, not an arbitrary or hypothetical figure. I can reassure the noble Baroness that the local authority may not set the personal budget to an amount which is less than it would cost the authority to meet the adult’s needs. The personal budget or independent personal budget must reflect the cost to the local authority of meeting the adult’s needs, not the cost to the individual of doing so himself or herself. Otherwise, this would create an unfair advantage for those with more means who are able to pay more for their care and would therefore reach the cap quicker.
I turn now to Amendments 92ZZMA and 92ZZQB, spoken to by the noble Baroness, Lady Wheeler. Enabling adults to request a review of either the care and support plan or the independent personal budget without a determination of reasonableness may leave the process open to abuse and create frivolous reviews costing the local authority time and money. For example, it would not be reasonable to request a review when a review has recently been conducted and needs have not changed. If an adult request is considered unreasonable, then the adult should be informed of the grounds for the local authority’s decision. We will cover this further in guidance.
On Amendment 92ZZR, we wholeheartedly agree with the noble Baroness, Lady Greengross, that if an adult lacks capacity the local authority must carry out the assessment if it believes that this would be in the adult’s best interests. We have addressed this in government Amendment 92ZZQC. This puts beyond doubt that the provisions of Clause 11 should apply to any refusal of a needs assessment by an adult with an independent personal budget. As a result, where an adult lacks capacity or is at risk of abuse or neglect, the local authority must carry out the assessment if it believes it to be in the adult’s best interests.
On Amendment 92ZZRA, I can reassure the noble Baroness that it is the Government’s intention to make regulations on choice of accommodation in residential care.
I turn to Amendments 92ZZRAA and 92ZZRAB, spoken to by the noble Baroness, Lady Wheeler. It is important that people should, as far as reasonably possible, be able to choose the accommodation they live in. People may wish to move into a care home in a new area—for example, to be close to relatives—and they should be able to do this even if this is in another local authority area. I can reassure the Committee that we intend to make regulations that enable people to exercise choice of accommodation both within and outside their current local authority. However, we do not believe that it would be appropriate to require local authorities to find and arrange care in another local authority area. While some might choose to do so, others might lack the local knowledge effectively to undertake this task. The requirement may also potentially have significant costs and could reduce the funds available to support those with the greatest needs.
I turn to Amendment 92ZZRB of the noble Baroness, Lady Greengross. Our approach in the Bill is simple. It allows any “person” nominated by the adult to receive a direct payment on their behalf, provided of course that the conditions specified in the Bill are met. In legal terms, a “person” means anyone with legal personality. Therefore, Clause 31 already allows the local authority to pay the direct payment to a person of a type specified by the adult. This includes user trusts set up as companies and organisations set up as companies.
On Amendment 92ZZS, I understand my noble friend Lord Sharkey’s concerns, and I hope I can reassure him that the local authority cannot fulfil its duties under the Bill unless it tells the adult what he or she needs to know in order to make a decision and reach agreement about whether or not to take a direct payment. Further, the Bill contains a regulation-making power at Clause 33(2)(f) to set out cases or circumstances in which the local authority must review the direct payment to ensure that it is being used and managed appropriately.
I turn now to Amendment 92ZZSA of the noble Baroness, Lady Campbell, to which the noble Baroness, Lady Wilkins, spoke. There may be only a limited set of circumstances in which a direct payment would not be appropriate, such as where needs can be met only through local authority-provided care and support. It is not our intention to for this to be used to limit access to direct payments. However, it is important that this provision remains in order to ensure that the adult’s needs are met via the most appropriate method.
Finally, I turn to Amendment 92ZZSB, spoken to by the noble Baroness, Lady Wheeler. It has always been our policy that, as long as used legally, there should be no restrictions on the type of services purchased with a direct payment, provided it accords with the care and support plan. Indeed, this reflects current guidance. Clause 25 requires the care plan to detail the needs to be met by the direct payment and, under Clause 31, a direct payment must be an appropriate way to meet those needs. There is no need to state in the Bill the type of providers from which people can purchase care and support.
The noble Baroness asked me what kind of client feedback there will be in the planning process. I am sure that she will agree that deciding the way that care needs are to be met is at the heart of a person-centred care and support planning process. These decisions should be agreed between the local authority and the person after considering the range of options and the person’s own wishes and goals.
We have made a number of changes to the draft Bill to address some of the concerns that we heard—that the balance of the care and support planning process was not adequately weighted towards the wishes of the adult. The process must also include involvement with the carer or any other nominated person, so that all people who can contribute have the opportunity to do so. It will in some circumstances not be possible to reach agreement between the local authority and the service user on the care and support plan, much as that is the aim. In those cases, the local authority will have to act to ensure that the person’s needs are met and that any risks to their safety are prevented. I hope that I have reassured the Committee that the care and support planning process is robust, and that the noble Baroness will feel able to withdraw her amendment.
Care Bill [HL]
Baroness Browning Excerpts(11 years, 3 months ago)
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Earl Howe
My Lords, this has been an excellent and very important debate and I thank all noble Lords who have contributed. I will, if I may, begin by picking up the remarks of the noble Lord, Lord Warner. He put his finger on a number of very important points. The system of locally determined eligibility for care and support has been confusing to people for too long. It has been seen as an unfair system under which different levels of needs are met on the basis of where somebody lives. The changes we are bringing forward will mean that people’s entitlements to care and support will be much clearer and fairer and will reduce variation in access between local authorities.
That is our starting point and, once this legislation comes into effect, local authorities will not be able to reduce eligibility below the level set out in regulations. They will be able to meet other needs which do not meet the national eligibility criteria through the power in Clause 19, but they will be required to follow a consistent approach to determining eligible needs. That is a big step forward. We must not view these national criteria in isolation. The Bill does a great deal for people with lower levels of need, including through provisions on prevention, information and advice. One of the key aims in relation to assessment is to ensure that this is effective in identifying needs and support options for all people, in particular to help those who do not have eligible needs and to prevent deterioration.
Clause 13 provides for regulations which will set out the eligibility criteria according to which local authorities must meet an adult’s needs for care and support or a carer’s needs for support. Amendment 88Q seeks to add this detail to the Bill. I understand why the noble Baroness would like to see the eligibility criteria set out in this way. Some noble Lords have questioned the number of important provisions being introduced through secondary legislation. However, in this case I believe that it is necessary. It is important that we get the eligibility criteria right, otherwise there is a danger that we will put in place a system that is more confusing than the one that we are replacing.
There is advantage in having the flexibility of setting the criteria in regulations; once again the noble Lord, Lord Warner, gave a helpful pointer to this in his remarks. We are not proposing to amend the national eligibility criteria on a regular basis. However, we need the ability to amend the regulations if it is shown that the criteria need to change at some point in the future. Of course, we would consult fully before making any such change.
To help inform debate on this area, and as noble Lords have mentioned, on 28 June we published draft regulations for discussion which set out the proposed national eligibility criteria. I emphasise that these are intended to set a national minimum equivalent to the level operated by the vast majority of local authorities in the current system. As part of the spending round announced recently we have committed to provide funding that will maintain the same level of services when authorities move to the new system in April 2015. This is the beginning of engagement with stakeholders before we formally consult on draft regulations next spring.
Amendment 88T is concerned with parliamentary scrutiny of the eligibility regulations. The power to set the eligibility criteria in regulations is one of the most important in the Bill and is central to the new care and support system. For this reason the Bill requires the regulations to be made under the affirmative procedure. That will ensure that Parliament will consider the regulations before they are introduced and that it will also consider any future changes. As a matter of course the regulations will also be considered by the Secondary Legislation Scrutiny Committee and the Joint Committee on Statutory Instruments. Therefore we do not believe that the regulations need further scrutiny by a Joint Committee of both Houses.
Amendments 88R and 88S in the name of the noble Lord, Lord Hunt, refer to matters that the Secretary of State should have regard to when making the regulations. Amendment 88R clarifies that the regulations may describe a person’s care and support needs by reference to the effect of needs arising from a physical or mental condition. The well-being principle at Clause 1(2)(a) includes physical and mental health, and this is reflected in the draft regulations. Regulation 2, which sets out the eligibility criteria, explains that needs are eligible needs if they have a significant impact on a person’s well-being and are as a result of a physical or mental impairment or illness. Amendment 88S proposes that a person should be eligible for care and support if they are in receipt of health services. As we debated earlier, a person can expect to receive an integrated service, but the determination of eligibility for care and support must be based on care needs only, rather than what health services a person is receiving.
A number of noble Lords suggested that the eligibility criteria should be set at moderate. As I have already said, this threshold is about establishing a minimum standard, not about taking away councils’ discretion to go further. Local authorities will remain able to meet lower needs locally if they choose to do so. Once again I was grateful to the noble Lord, Lord Warner, for his realistic assessment, and to the noble Lord, Lord Lipsey, for his comments. The eligibility criteria are intended to be equivalent to the level operated by the vast majority of local authorities in the current system. Independent research suggests that it would cost an additional £1.2 billion to set the threshold at moderate for younger disabled people and those with mental health needs, and a further £1.5 billion for older people. The combined total is £2.7 billion, which is a large amount to find in the current financial climate.
The pooled funding that we are proposing is important to factor in here. The noble Baroness, Lady Grey-Thompson, suggested that setting the criteria at moderate would save money. It is important to understand what the pooled funding is designed to do. Once again, the eligibility criteria should be seen as part of the overall system that we are putting in place. The pooled funding that we have announced will support better integration between local authorities in the NHS to improve outcomes for the local population. Part of this funding will be used to support local authorities and the NHS if they need to intervene earlier to prevent people’s health or care needs worsening. That will include many of the people with low or moderate needs.
The noble Lord, Lord Low, suggested that universal services do not have the capacity or resources to meet the aspirations that the Government have set out. As we have debated, the Bill sets out new duties on local authorities to provide universal services such as preventive services. These will also be supported by statutory guidance to make clear the expectations that we are placing on local authorities. Moreover, as I have mentioned, the pooled funding is relevant here. Among other things, that will enable preventive and integrated services, which also benefit the NHS.
The noble Baroness, Lady Grey-Thompson, said that it was not fair that the cap applies only to eligible needs. We will debate the Government’s proposals for the capped cost system in due course. However, access to the cap needs to be consistent in order for the system to be fair. Using national eligibility criteria will ensure that the cap applies on an equivalent basis in every area. The noble Lord, Lord Lipsey, commented that the eligibility criteria will not solve the huge variation within local authority areas due to variable assessments. First, the eligibility assessments will set a minimum threshold, which is important. Some differentiation in local implementation will remain, but as referred to previously, we will require that local authorities appropriately train assessors to ensure that assessments are carried out properly, and we will publish guidance that will help to reduce variation.
My noble friend Lady Jolly asked whether we can ensure that the regulations become more asset-based and that that work involves experts. I can reassure her that the Bill already allows for the individual’s strengths to be taken into account in the assessment. In relation to the draft eligibility regulations I can assure her that we will engage widely with stakeholders to make sure that they deliver our policy.
Baroness Browning
As far as the eligibility criteria are concerned there is another indicator, which I have not heard mentioned in this debate, and that is the number of people who challenge their local authority through the courts. Currently—from my own experience of case work, particularly with those on the autistic spectrum and with learning disabilities—many local authorities, when challenged legally on this, will settle before it goes to court. It is difficult to quantify what that number is, and I do not know whether what I am asking my noble friend is practical. However, in monitoring whether the eligibility threshold is correct, particularly for those with low to medium needs, would the Government be prepared to use the number of applications for legal challenge and, if possible, of those who settle out of court before it goes to court? That is a very clear indication of where local authorities refuse because the current eligibility criteria have not been properly constructed. When challenged, they usually pay up pretty quickly.
Baroness Browning
In the case that the noble Lord has just mentioned, would there be any question of the lady concerned being assessed as not having capacity?
Care Bill [HL]
Baroness Browning Excerpts(11 years, 3 months ago)
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Baroness Browning
My Lords, I will speak to two amendments standing in my name in this grouping. The first is Amendment 86H, to which the noble Baroness, Lady Pitkeathley, has put her name. This deals specifically with proportionality and early identification in providing information and advice.
In its report on adult social care, the Law Commission argued that it was essential that the issue of proportionality be addressed in the regulations setting out the assessment process. The Law Commission stated that where a person has complex or multiple needs, a proportionate assessment would require an in-depth and comprehensive exploration of those needs—something which we have already heard about this afternoon. Defining complex needs can be difficult, with the full extent of needs not always immediately identifiable. For instance, older people in particular do not always present their needs accurately on first or subsequent contacts.
Deploying qualified social work staff across all areas of service provision, including the information and advice stage, would help—as this amendment seeks to do—to ensure that the potential for complexity is recognised early on and the individual receives signposting to non-statutory services and/or initial statutory sector support proportionate to their needs.
Looking round the Chamber, I see several people who I meet on a weekly basis as we are currently carrying out post-legislative scrutiny of the Mental Capacity Act. The assessments of capacity across a range of people—not just the elderly, who are very important, but even much younger people—are extremely important. It is extremely important that there are qualified social workers who are involved in this exercise.
To have the social worker available at the pre-assessment stage, as part of an information and advice team, would allow unqualified staff the benefit of accessible professional support. I am aware that the College of Social Work supports this measure and the duty on local authorities to ensure that in providing advice and information, qualified staff are deployed in sufficient numbers to ensure that all aspects of need are taken into account. This would ensure that people are put in touch with the most appropriate services for them from the earliest opportunity.
I am aware of the letter that my noble friend sent to the noble Lord, Lord Hunt, dated 27 June, in which he covered in the first paragraph the query by the noble Lord, Lord Warner, about ensuring that there are sufficient skilled workers. When he responds, would he cover this question of sufficient qualified social workers? His reply to the noble Lord dealt mainly with staff employed in the health service as opposed to social services. We have heard a lot in these debates about the need for multidisciplinary teams in decision-making, so I would be grateful if he would address the question of the number of skilled social workers who might be deployed, particularly at the initial information and advice stage when early assessments are carried out.
My second amendment in this group is also in the name of my noble friend Lady Barker. It addresses the question of independent advocacy and proposes a new clause. Of course, I am aware of the role of, and the statutory requirement for, IMCAs in the Mental Capacity Act. I will not pre-empt the findings of the post-legislative scrutiny committee on the Act, but I will explain why I felt it necessary to propose a new clause in the area of independent advocacy. I refer the Committee to my interest in the register, and in particular my ongoing interest in autism, mental illness and people with learning disabilities.
The right to advocacy is essential to enable the people who find it hardest to communicate to exercise their rights, represent their interests and obtain the services they need. Clearly, if somebody is deemed not to have capacity, there is already statutory provision for an IMCA to assist them with decision-making. However, it is also vital that those who experience substantial difficulty in understanding, retaining, using or weighing information relevant to an assessment, and then expressing and communicating their views, should also have access to an advocate. I referred just now to autism. People on the autistic spectrum might be deemed to have capacity but their disability might mean that they would have difficulty on their own, without the help of an advocate to explain and help them work through the decision-making process. That group is not adequately covered by the provisions of the Mental Capacity Act.
Advocacy is separate from information and advice. It provides support to some of those who are most vulnerable and most in need of services, including those with autism. There was a recent commission on autism and ageing chaired by the noble Baroness, Lady Greengross. Both she and I have had to forfeit the presentation of that report to be here in the Chamber. The report found that the families of people with autism frequently act as their advocates. Ninety-six per cent of parents with a son or daughter with autism recently told a National Autistic Society survey that they were concerned about what would happen when they passed away or were unable to support their children. This fear is common to parents of people with many different lifelong disabilities, not just autism. Families frequently say how worried they are about what will happen when they can no longer perform an advocacy role, and that independent advocates must therefore be available.
If the Bill is to help ensure people access the support they need—including people who are currently missing out—advocacy will play a vital role. I ask my noble friend to consider this large group of people who are not covered by existing statutory provision, for whom the new clause would provide a safety net to enable their services and package of care to go forward, thereby ensuring that they have equal opportunity to access the services that we are discussing in relation to the Bill.
Lord Lipsey
My Lords, perhaps I may remind the Committee that I am the honorary president of the Society of Later Life Advisers. SOLLA accredits the gold-standard financial advisers who will be so important to the working of the Bill.
My six amendments in this group are Amendments 83B, 83C, 86B, 86D, 86F and 86G. Before I turn to them, I will say a few words more generally about advice and the Bill. If the Bill is to do the job we all hope and expect it will do, information and advice should be not just an add-on but a central requirement, without which the Government’s plans, however well meaning, will collapse, and old people and their families will end up frustrated and angry. This is for several reasons. First, there is a widespread reluctance among old people and their families to face up to the problems of care in old age: how to get it, whether to be cared for at home or in a home, and how to pay for it. It is marvellous that people are living ever longer, but that does not mean that the very last years of their life are easy. Not surprisingly, people do not like to contemplate the years before their demise until they feel they absolutely have to.
Secondly, there is an extraordinary ignorance among older people and their families about social care. More than one person in two still thinks that the state will pay in full for the care that they will require. Thirdly—it is early days, I know—there is even less understanding of Andrew Dilnot’s solution. For example, many people—I have even come across a few in this House—think that once you have spent £72,000 on care, you will be looked after for free. This is not so. You will have to fund hotel costs of £12,000 a year. More importantly, you will have to fund the excess care costs over what a local authority would pay to look after you. That could cost a further £25,000 a year. If my arithmetic still works, that means many people will have to pay £37,000 a year after the cap has been reached, so they should plan for that.
Different people in different situations need different advice. Somebody whose care costs are paid in full needs different advice from somebody on the means test. Whatever their circumstances, very few people are capable of navigating these waters without a trusted pilot or pilots. Local authorities are experienced in conducting assessments of people and in helping them. The noble Baroness, Lady Greengross, made this point well. They have interests that may be different from, or even conflict with, those of the people they are advising. For example, under the existing deferred payment scheme you do not have to sell your house but can take out an interest-free loan. It is evident from the figures that many local authorities try like mad to persuade people not to go down that road because it costs the authority a lot of money if they do. Even if it would be beneficial to the individual, they steer them away. It is human nature. That is why it is vital that when advice is needed on this kind of subject, it should be independent of the local authority.
Baroness Browning
I agree with what the noble Lord said. Something that is rarely mentioned but is often a solution for many elderly people when they go into care is not that their house is sold but that it is rented out. That can be a very viable, practical and suitable solution. Local authorities never mention that, and nor do they have the means to provide such a service.
Lord Lipsey
I quite agree with the noble Baroness. That is exactly why independent financial advisers can be so helpful. Often, the rent on the house will pay for the whole of care, and still leave the home to be handed on to the children if that is what the old person wishes.
All this underlines the fact that it is crucial that the advice comes from people who are qualified to give it—not necessarily local authority social workers, CAB advisers, regulated independent financial advisers and so on. Nor is it any good the local authority just handing out a list of people and saying, “You can go and see them and ask their advice”. For one thing, frequently there are issues of mental capacity, and the stress on an old person at this time is likely to be severe, particularly if they are thinking of going into a care home. For another, there is the general reluctance problem, and people are also often frightened by the cost of the independent financial advice that they may be seeking.
Some local authorities in these circumstances are performing heroically. I recently opened a centre in West Sussex which combines the resources of voluntary organisations, the local authority and independent financial advisers to offer a comprehensive service. It has recently relaunched its service and a local radio station, Spirit FM 96.6, has featured it in its drive time programme every weekday, which is tremendous. Incidentally, in doing this, the local authority is not acting wholly selflessly. Many people in West Sussex who have moved out of London to retire have quite a bit of resources but do not have infinite resources. If they are not well advised on how to use their resources they will run out of money and fall back on the council and its means-tested benefits to pay for their care. However, if they are properly supported, learn to use their money well and are advised of the products that are available to help them, they will not fall back on the local authority. So this, again, is a case where appropriate advice, properly structured, can save public money, not cost it.
Lord Beecham
My Lords, this Bill has the potential to do for social care what Beveridge did for the welfare state and Bevan did for the health service. It is potentially the most significant development in, for example, residential care since the workhouses were replaced by a more civilised form of residential accommodation.
The noble Baroness, Lady Barker, anticipated precisely the point I was going to make, which is that this is not just a matter for local authorities. My principal reservation about these amendments, if I have one, is that it looks as though the entire burden of information and advice is to be placed on local authorities whereas of course, as the noble Baroness rightly said, there are other potential partners who clearly need to be involved. I scribbled on the grid that is helpfully provided by those who support the Front Bench on this side the words “in collaboration with”, and then I thought of a number of potential partners. Of course the health service is one of them, but in addition I would suggest that the Court of Protection needs to be involved. It has a supervisory and supportive responsibility for a particular group of people and, with the development of lasting powers of attorney and so on, their deputies as well. I have to say—I have said it before and I will say it again—that I am not convinced that the Court of Protection is doing a terrific job in this area, but that is another reason why it should be looked at as a potential partner.
There may be other partners. For example, in the case of younger people perhaps with a learning or other disability, there are roles for those involved in further education, the Department for Work and Pensions and the Department for Business, Innovation and Skills. Those bodies might look at their role in terms of what is available by way of education, training and so on. It seems to me that a range of organisations should be involved, certainly as a whole, but more particularly in the provision of information and advice.
On these Benches we support most of the amendments that have been moved and spoken to this afternoon, with the qualification that, where relevant and necessary, a reference to collaboration should be included. For example, in Amendment 82B, the first amendment moved by the noble Baroness, Lady Greengross, one would want to see “in collaboration with” appropriate partners.
We support the amendments, notably moved by my noble friend Lord Lipsey, around the provision of independent financial advice. That seems very important. I have a slight reservation about Amendment 86D, which is about payment of,
“the reasonable costs of a first consultation with an independent financial adviser”,
to be paid for “by the local authority”. If I am ever in need of this kind of advice, I would be able to afford that relatively easily. Given the pressure on budgets, is a universal application of that principle necessary or desirable? That, however, is a detail, that might be looked at later. Given the scale of the potential involvement and the potential conflict of interest referred to by several noble Lords, the independence and proper status of such financial advice are important considerations.
With regard to the amendment in the name of the noble Lord, Lord Sharkey, I will perhaps anticipate the Minister by quibbling over the word “demonstrably”. Frankly, I am not sure that that takes us very far. As the noble Lord admitted, what is demonstrable to some is not necessarily demonstrable to others. I do not think that that part of his amendment is particularly cogent, although I agree with the rest of it.
I have more serious doubt about the amendment of the noble Baroness, Lady Browning. Amendment 86H requires that the information and advice be provided by “social work-qualified staff”. It could be, but I am not sure that it should be a requirement that it should be, given the pressure on the service in dealing with casework as it is. I do not think that the skills of social workers are always consistent with the role of giving information and advice in the sense that is intended by the amendment.
Baroness Browning
It is important that qualified social workers are present for the initial assessment. One of the things that might come out of our scrutiny of the existing Mental Capacity Act is the fact that the assessment of capacity requires professionals. Social workers clearly have a part to play in that. Whether the person has capacity, partial capacity or no capacity at all, at that point some advice is given and direction is needed. It seems to me that that is not the role of an amateur.
Care Bill [HL]
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Baroness Browning
My Lords, I speak to Amendments 88B and 88N in this group. The noble Lord, Lord Touhig, has added his name to Amendment 88B, which is about the need to co-ordinate between two pieces of legislation: this Bill and the Children and Families Bill, which is also going through the House. It focuses on assessment, particularly at the time of transition from children’s to adult services. That is a very sensitive time, and the Minister will not need reminding that it was the weakness in the system of transition that prompted the initiative for the introduction of the Autism Act. There is much well documented casework about young people on the autistic spectrum who move from children’s to adult services that gives us a great deal of cause for concern. As the noble Lord, Lord Low, has just pointed out, if people do not get their correct assessment and services at the right time, they simply move on to more serious deterioration in their condition. Just looking at the bottom line, it is usually a crisis management situation, which is not good for the individual and certainly costs the statutory services a lot more money than it would have done if the transition had been smooth and matters had been dealt with properly.
Amendment 88B therefore calls on the Government to consider how this new system of SEN reforms in the Children and Families Bill will fit with the changes that are proposed in this Bill. Appropriate planning and support in the move to adult services is very important, and it is important that these two areas are co-ordinated. There is a danger that they could be done quite separately from each other, which would not be in the interest of the individual concerned. Under the Children and Families Bill, some young people—for example, those with autism—will be able to access an assessment for the new education, health and care plans, which of course will replace what we used to refer to as statements, up to the age of 25. This creates a clear overlap with care assessments under the Care Bill, which the same young people with autism may be eligible for from the age of 18. It is very important that the two systems of assessments and plans talk to each other.
In particular, that means that when a local authority carries out a needs assessment, as in Clause 9 of the Care Bill, it must ensure that it is co-ordinated with any assessment for an education, health and care plan that may also be under way under a separate piece of legislation. I have mentioned autism—I am sure that will not surprise my noble friend—but of course it will apply to young people with other conditions as well. However, this is particularly important for the autistic community because we know that it is during that move from the structure of full-time education in school into adolescent and adult services that you start to see a great deal of change in the individual, as the structured routine of the day starts to move to more adult choices and ways of doing things, including education.
I therefore hope that my noble friend can reassure me tonight that these two pieces of legislation will be compatible, that discussions have taken place between the two departments to make sure that there is no overlap, and that that famous word “seamless”, which I have heard so many times related to transition from children’s to adult services, will genuinely mean “seamless”. I spent 18 years as a Member of Parliament but did not see much that I would recognise as seamless. We have the opportunity to make this seamless. I hope that my noble friend will assure me that that will happen tonight.
I will speak very quickly to Amendment 88N. I tried with an earlier amendment to get my noble friend to agree that social work-qualified staff played a greater role in providing information. I will now have another go, as when he replied earlier I got the hint that he did not seem to accept my argument. I will try again in terms of their role of assessment, which is much more narrowly defined in Amendment 88N. That amendment ensures that information and advice are not only proportionate, but that the local authority must employ social work-qualified staff to provide the information and advice in cases where present or foreseeable needs are classified as complex. Of course, this goes into regulation, which is what this part of the Bill requires.
I hope that my noble friend will look more kindly on this particular recommendation because these are complex needs or—and this is important—foreseeable complex needs, so you are dealing with some of the most difficult cases. You are almost certainly looking at cases where there is some lack of capacity for a start, as well as people with multiple diagnoses and those with very complex situations. It is important that social workers are there. I am asking a Minister with responsibility for health to recognise that unless we in this House bring social work and healthcare together in statute, whatever our best intentions, it will not happen. Again, from all that casework I dealt with—I raised this at Second Reading—as a Member of Parliament, when somebody sat in my surgery and said, “What you need is to get all these people together round a table”, I, the MP, could never work out why nobody ever took responsibility for it. By bringing into regulation the role of the social worker, you make some progress in ensuring that in these very complex cases things are not only speeded up but that there is a much better outcome.
Baroness Wilkins
My Lords, I will speak to Amendment 88A. This amendment relates to Clause 9, which requires a local authority to carry out an assessment where an adult may have needs for care and support. The clause sets out things that the local authority must consider, for example the outcomes the person wants to achieve in their day-to-day life. There are similar provisions in Clause 10 in relation to a carer’s need for support. There is, however, an anomaly between Clauses 9 and 10. Under Clause 10(6), the local authority also has to take account of whether the carer works or wants to work, and whether the carer is taking part—or wants to take part—in education, training or recreation. That provision is missing from Clause 9, while in other respects the two clauses closely mirror one another. Surely the same provision as Clause 10 proposes in relation to carers should apply to people in need of care and support? While many of those with a need for care and support may be elderly, or may not be able to—or want to—work, others will want to. Many will be interested in education, training or recreation. This is an important gap that sends an unfortunate message about the ability or desire to work of those with needs for care and support.
Of course, it may be that the Government will argue that this is covered by Clause 1(2)(d), which includes in the concept of well-being,
“participation in work, education, training or recreation”.
If that were so, however, presumably the separate provision for carers in Clause 10(6) would not be needed.
I understand that overwhelming evidence exists that carers are often forced to withdraw from education or employment. That may well be why the Government felt they should include the emphasis on these things in relation to the assessment of carers’ needs. Possibly there is not as much evidence in relation to disabled people, and, as I have said, many social care users are older people. That does not mean that they will not be interested in education, training, recreation or even work. One in three people who use social care services are disabled people of working age.
In the recent report The Other Care Crisis by five disability organisations, the researchers found that time and again disabled people told them that the right care and support was critical in finding and sustaining work, studying and keeping fit or enjoying the arts. How can you hold down a job if the hours and type of support you are provided with take no account of a course you may be studying or of a job? What if the job starts at 9.30 am but your carers do not come to get you up until 9 am, or they turn up at different times each morning because of short-staffing?
Carers UK and others have rightly worked very hard to show the impact of caring on employment chances. As I say, this may well be the reason why the Government has included Clause 10(6). The Government may simply not have realised, however, how this would come across to users of social care services who wish to work. I hope the Government will want to rectify this anomaly.
Autism
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Earl Howe
My noble friend draws attention to a very important strand of support for people with autism. Many people with this condition can benefit from small amounts of advocacy, help and support often through less formal support networks and not necessarily through the local authority. We will certainly be looking at that area.
Baroness Browning
I declare my autism interest in the register to the House. Does my noble friend accept that the Department of Health is the lead department on the Autism Act, but that other departments have responsibilities as part of the strategy? He will be aware of the finding of the Upper Tribunal (Administrative Appeals Chamber) in a case against the Secretary of State for Work and Pensions that the case has to be made that autism is different. Can I ask him to make sure that that case is made by his department to all other government departments involved in the care of people with autism?
Care Bill [HL]
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Lord Patel
My Lords, I rise briefly to support my noble friend Lady Greengross. It is not that her sentiments about registration are not right but we debated this at great length during the passage of the Health and Social Care Bill and to a degree I felt that we lost the battle about registration then. What is now important is Amendment 23A, which, with all due respect, is a better amendment because it focuses much more on training and the responsibility of the employer. I agree with the noble Baroness, Lady Cumberlege, that HEE is not the right organisation to be a regulator of registration.
Baroness Browning
My Lords, I refer to the register and my charitable interests. I am also the named carer for an adult with a direct payments care package.
I support the amendment of the noble Baroness, Lady Greengross, although I must tell her that I have listened very carefully and I share some of the concerns about which is the right body. However, the argument for the principle of her amendment is well made.
The Bill gives Health Education England responsibilities for ensuring that the health workforce has the necessary skills to meet the needs of patients. That is valuable but there is a key omission concerning the registration of healthcare assistants and care assistants. Although those doing this work provide the vast majority of personal care to people receiving health and social care services and are fundamental to promoting and protecting service users’ dignity and respect, there have been—as we have debated on many occasions in this Chamber—far too many concerning reports in the recent past. These reports have indicated that something needs to be done at all levels and in all structures in healthcare, whether in hospitals, care homes or people’s own homes.
The Francis report clearly showed the failings at Mid Staffordshire Hospital and, while it identified the trust management as responsible for the shocking quality of care, it outlined incidences of poor care and inaction by healthcare assistants in reporting concerns. At Winterbourne View, people with severe learning disabilities were treated with an appalling lack of dignity by care assistants and nursing staff, some of whom have since been given prison sentences. A number of reports looking at dementia care in hospitals have found unacceptable variations in practice and high levels of dissatisfaction, alongside incidences of unacceptable care. A number of reports looking at home care provided to older people, including the Alzheimer’s Society reports Support. Stay. Save. and Home Truths, as well as an inquiry by the Equality and Human Rights Commission, indicate that care assistants lack the time to provide good-quality care to service users. There continue to be isolated incidences of reported poor care and abuse of older people in care homes. I shall not continue the list. Sadly, it goes on, and we see new reports in newspapers even today. It is so frustrating that we raise these issues and try to do things about them but they still continue.
Care Bill [HL]
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Baroness Browning
My Lords, it gives me great pleasure to follow the noble Baroness, Lady Emerton, in these matters. She has not only a lot of knowledge, but a great deal of personal experience. I always listen carefully to what she says. I refer the House to the register and to my interests particularly in certain charities which I shall mention. I, too, share the welcome that has been widely given across the House to this legislation. It has great potential to improve the lives of many people with a disability or who are elderly and frail. Simplifying legislation that affects local authorities’ care responsibilities is both timely and something that many of us hoped would happen for some time.
Like others, I share concern about the ability to fund such an ambitious piece of legislation. In the impact assessment available in the Printed Paper Office, I noticed that the monetarised benefits actually outweigh the public sector costs. If that is true, it is really to be welcomed, but I must tell my noble friend at the Dispatch Box that in Committee we will want to look carefully not just at the costs identified in the impact assessment, but at what are perhaps the glaringly obvious omissions, particularly future demographics. This Bill is very generous. To a degree, it seeks to underwrite the costs for people who currently do not receive state help with their care. The way in which the population demographics work out in this way is challengeable. I would say to my noble friend that what is really important is that we do not raise expectations through this legislation, only to find that they cannot be resolved.
I say this from personal experience. I remember some years ago when my son, who has Asperger’s syndrome, was in his late 20s and lived permanently at home with my husband and me. As the named carer, I received through the post forms to fill in, asking me what my carer’s needs were. Every time this form came, I am afraid that I wrote across it in large letters: “If my son’s needs were met, my needs would be minimal”. They probably caught me on a bad day. As any carer will know, the reality was that sometimes even the very basic needs of the person you are caring for are not met. In a way, this Bill promises that this will be addressed. After all, what does “well-being” mean if not the well-being of the whole person? The well-being of carers is very much dependant on the well-being of the person for whom they care.
This is particularly relevant among those people who cannot advocate for themselves. We heard in today’s debate discussion about people with dementia, mental health problems and learning disabilities—so ably expanded by my dear noble friend Lord Rix. I have had an association with various autism charities and can say that these people need somebody to make the case for them—usually the carer, though there is not always an immediate carer. It is really important that this legislation will fulfil its promises.
I am a little concerned about one particular area. Although it is extremely welcome that throughout this Bill there are requirements to assess—for example, the person needing care or the carer—if those assessments cannot be fulfilled, there will be a huge feeling of let-down. My own experience, not just as a carer, but having served for nearly 20 years in another place as a constituency MP, is that all too often there is huge push-back and resistance to an assessment, even when there is a statutory requirement to provide it. This is purely because the people who are asked to carry out the assessments know only too well that whatever their conclusions, they cannot do very much about them because the resources are not there to deliver what that person needs.
It must be pretty awful for the people who carry out those assessments to know that if they do their job fully and properly, at the end of the day there is not an awful lot they can do to make a difference to that person’s life. I think my noble friend described the resources attached to this legislation as being about the engine working better rather than putting more petrol in the car. I would say to him that the engine needs to work better and he needs to fill up a few more times, otherwise I do not think that the resources will meet the need.
Looking quickly at the autistic community, I mentioned earlier that there are some omissions. This applies both to autism and to people with dementia, perhaps more elderly people who go on to have Alzheimer’s. There are a huge number of people who are still undiagnosed. In the autistic community it is improving, particularly with younger children. However, there is still an adult community with needs that do not always come to attention. As with those with learning disabilities, if they have been living at home with elderly parents who themselves have a crisis, it is the crisis of the person they have been caring for that comes to the attention of the authorities. All too often, that means crisis management and huge sums of money with all the disruption that goes with it to try to put some form of stability package in place at short notice.
This is not helped by something which the Bill aims to address—I hope it is successful and has been touched on by many speakers already today. This is the relationship between health and social services. When I was a constituency MP, I used to say, tongue-in-cheek, “We are having an ‘Oklahoma!’ moment”. Often people would come to my surgery with the typical problems of those who do not receive the correct services, or are carers who are at breaking point and cannot get anybody to understand their needs. For those who can remember it, “Oklahoma!” has a song with the line, “The farmer and the cowman should be friends”—but they never seem to talk to each other. That is the “Oklahoma!” moment, and it is quite easily resolved by Members of Parliament. When in my surgery or on the phone I was presented with a problem that quite clearly needed a group of people to sit around a table and talk about it, I used to cut to the “Oklahoma!” moment as quickly as I could. All too often, good things happen when an MP says to health and social services, “I think you should get together”. Indeed, I sometimes used to say, “Don't worry, I'm very happy to come along to the meeting myself”, which usually galvanised a few people. Problems were not always totally resolved overnight, but we started to make progress. It used to occur to me, “Why do I have to have this ‘Oklahoma!’ moment when all these people could be doing all this for themselves?”.
I say to my noble friend that, as we go through the Committee stage of the Bill, I will want to pay particular attention to those parts that seek to improve things so that we do not have “Oklahoma!” moments. The structure must be such that automatically there is dialogue and not stand-offs about who pays for what, because the difference between who funds the social care and who funds the health care is addressed in the Bill. All of this bodes well for resolving many of these problems, but I still have concern that if the resources are not available, we shall not do so.
Finally, it is important that we have a new piece of legislation on the statute book; the Autism Act. It has not really bedded down yet and it is early days. But the new Care Bill must ensure that the duties in the Autism Act statutory guidance continue to apply to local authorities and local NHS bodies to ensure the ongoing implementation of that Act. I hope that the Minister will be able to reassure me on that when he makes his concluding remarks.