Dementia

Baroness Pitkeathley Excerpts

Thursday 28th June 2012 Lords Chamber

[Baroness Pitkeathley]

My Lords, I thank my noble friend Lord Touhig for securing this debate and for introducing it so passionately. In your Lordships’ House, we often talk about the ageing of society. People are living longer—a lot longer—and this is a subject for rejoicing and a tribute to developments in society and health provision. However, as we have heard, one of the other consequences of this development is undoubtedly the increase in dementia. We are all aware of the figures and I will not repeat them. Although there have been some welcome developments in recent years, not least as a result of the publication of the dementia strategy and, latterly, the Prime Minister’s commitment, there is still a very long way to go. Most people with dementia and their carers are not living well.

Although we have made progress, we still have a lack of awareness. Dementia is not something we really want to discuss, still less plan for within our families. I always remember when I was leading the carers’ movement that we managed to get a dementia storyline placed in one of the leading soap operas. However, it did not last long because the issue of incontinence might have had to be faced and the producers felt that the viewers did not want to know about having to wash soiled sheets.

There are also great difficulties in diagnosis. Let us not forget that up to 40% of acute hospital beds are occupied by dementia patients, but of that number as many as 80% have their condition diagnosed after they have been admitted. They are, therefore, being nursed and treated by non-specialised staff who may have little or no experience of the condition and of whom it is unfair to ask the skills and competences which such patients need.

It may be that GPs are reluctant to diagnose dementia because, as the noble Lord, Lord Wills, has reminded us, they believe there is no cure or because they do not want to depress either the patient or his or her relatives. However, without proper diagnosis, there is no hope at all of putting patients and their families in touch with the services they badly need. We should not forget either that the number of people with dementia that each individual GP sees during their career is relatively few and we should not expect them, therefore, to be an expert in diagnosis. What we can and should expect is that they are willing to make referrals to experts who can make a diagnosis. Talk to the family of any dementia sufferer and they will almost invariably tell you a long and distressing tale of how long and how much persistence it took to get a proper diagnosis.

The third thing is the lack of support. Dementia can be coped with but support services are vital and they are in short supply, and I am afraid they are getting shorter. Caring services are in crisis due to lack of funding. Talk to anyone engaged at the sharp end and the story is the same. Fewer and fewer older people, including those with dementia, qualify for local authority support, and many services provided by the community and voluntary sectors are disappearing. Those services especially under threat or gone already include those aimed at preventing those with low-level needs from reaching a crisis situation.

Let me tell your Lordships about Raymond, who is 85 and cares for his wife, Margaret. He says that Margaret,

“has been diagnosed with dementia. My caring changes from day to day and week to week. You are living on a knife edge—you don’t know what the next hour or day will bring … I have a nurse who comes to get”,

Margaret,

“up at 7.30 in the morning and then puts her to bed at 7.30 in the evening”,

but her visits are now only 15 minutes long—and Raymond has been told that they have to be cut down to nine minutes in the next year. Margaret,

“goes to a care home from 9.30 until 3 in the afternoon”,

every Wednesday,

“which is a great help. They have games and entertainment. I can get down to my jobs while”,

Margaret is away. It used to be Wednesday and Thursday, but it has been cut down to one day a week. He goes on to say:

“Caring is very tiring. I try to cope to the best of my ability but I find I can’t take it in my stride. Life is very stressful, especially the practical work. I prepare meals and do the housework … I pay someone to sit in with”,

Margaret, once a week,

“while I go out … I go to a carers’ meeting on a Friday. It’s like opening another door. I can get back to normal. The tension goes away and my head clears. We talk among ourselves and there is a pleasant atmosphere. We all have a tale to tell. I find out how other carers overcome their problems. It’s an escape valve. You are with your own kind—people who know what you are experiencing. Without the day centre and the carers’ group I couldn’t manage … I don’t know what I would do”.

Although Raymond is 85, he does not want to give up caring for his wife. However, unless he has what he calls his escape valve, what will happen to him? I have to tell your Lordships that the day centre provision is under threat and the carers’ group, which was set up by a local authority worker, is now run by carer volunteers.

The noble Lord, Lord Touhig, reminded us how important it is to support the families who provide the bulk of care for dementia sufferers. As I often remind your Lordships, they are saving the nation £119 billion a year, so it is in all our economic interests to keep them in a caring role. But it is also important for the future because we will need many more carers. If they are not also going to become a drain on our economy in their old age, we have to support them now and enable them to stay in paid work as long as they can. The recent report published for Carers Week, In Sickness and in Health, tells a very distressing story about the health of carers as a direct result of their caring responsibilities. No fewer than 87% of them said that caring had a negative impact on their mental health and 83% on their physical health.

Carers and the people they care for already pay for services. If they are not eligible for social services or their income is above a threshold, they have to pay, which can range from domestic assistants to care workers. Services can be arranged with the local authority or trust, and others through private companies. This is often the cause of financial distress for carers. With the introduction of personal independence payments and changes to employment and support allowance, this may lead to substantial numbers of people losing benefits, which may mean that the person being cared for can no longer purchase the service. That means that carers will have to find alternative ways in which to pay for a service by dipping into their savings, getting into debt or simply going without.

In the current economic climate, there are concerns that an already struggling system is going to be further hit. Cuts to services will only make matters worse. For some carers, the ultimate impact will be giving up caring themselves because their health has deteriorated so much that they can no longer do it. That comes at a significant cost, as the person they care for will need to be admitted to residential care. For others, they are storing up serious problems for their future. Who will be there to provide the care in their place, if carers can no longer carry on?

I have three questions for the Minister, who I know is very aware of carers’ problems. Indeed, I was most grateful to him for attending a carers event that I hosted last week and for taking time from his very busy schedule to speak to carers and hear their problems. I appreciate that and know that he has always been concerned about this issue. Let me put the three questions to him. When will the Government act on the issue of sustainable funding for social care? The reform of the law on care is very welcome and I understand that we will hear about that shortly in the White Paper but we have to address properly the funding issues. How can we ensure that there is ongoing support for carers, including giving them a break—the kind of break that Raymond has just once a week that enables him to keep going? We heard rumours at one point from one of the Ministers that the Government were planning to enable GPs to prescribe respite care for carers. Is there any truth in that? On the subject of general practitioners, how in the new structure of the NHS do the Government plan to monitor the performance of GPs with regard to carers, since they are so important for them as a first port of call?

Social Care: Legislation

Baroness Pitkeathley Excerpts

Monday 11th June 2012 Lords Chamber

[Earl Howe]

My Lords, my noble friend raises an issue that has been very much in our sights as we have prepared the progress report on funding. I can only ask her to be patient a little longer until the report is published.

[Baroness Pitkeathley]

My Lords, the Minister will know that many older people are concerned not only about how they will fund residential care, should they need it, but also about its quality. How will the White Paper ensure adequate and indeed satisfactory quality for the delivery of residential care, and also the competence of those who deliver it?

[Earl Howe]

As the noble Baroness will know, one of the main reasons that we wanted to engage widely in recent months with the sector was the very issue that she raised. The quality of social care, the training of those in the workforce and the supply of carers, both paid and unpaid, are concerns going into the future. As the noble Baroness will find out, this will be a major focus of the White Paper.

Health and Social Care Bill

Baroness Pitkeathley Excerpts

Tuesday 13th March 2012 Lords Chamber

[Baroness Hollins]

My Lords, I support the amendment. I note that one of the reasons given for not considering statutory regulation for this group is that there is a very high turnover of staff in this grade. This seems to me to be a symptom of an unsatisfactory situation and perhaps points to the poor job satisfaction and lack of prospects for healthcare workers. My noble friend has pointed to the problems with skill mix. I think that she was really talking about skill mix across the whole range of mental and physical healthcare settings and not just physical healthcare. Within that, she would have included people with learning disabilities.

It seems to me that there must be some minimum requirements for training and supervision. I know that the Government suggest that it is the responsibility of the employer, and perhaps also of the commissioner, to ensure that the service which is provided reaches minimum standards. Perhaps that requires that, in order for commissioners to contract with an employer, a service has to have been appropriately accredited. A service which has been accredited has of course been accredited for the whole service, not just for the work of individual staff, who are subject to their own regulatory authority.

This morning, I revisited the Royal College of Psychiatrists’ accreditation standards for adult in-patient wards for people with learning disabilities—I should remind noble Lords that I am a past president of the Royal College of Psychiatrists and a psychiatrist myself. The college’s general standards very helpfully include attending to recruitment and retention of staff, training, supervision, management of complaints and so on. It is helpful to think about the relationship between the necessary accreditation of services and the need to attend to the training and aspirations of all those staff who work in such services: retention and job satisfaction are key to this.

[Baroness Pitkeathley]

My Lords, I join with others in paying tribute to the noble Baroness, Lady Emerton, for her tenacity and commitment in keeping the issue of healthcare assistants before your Lordships’ House. She may not be my noble friend in the political sense, but she has been my friend in the professional sense for many years.

I am sorry, therefore, to disagree with her on this particular issue. Indeed, it seems that I am a lone voice disagreeing with her. I certainly want to emphasise that I do not disagree about the problem with regard to healthcare assistants which has been so thoroughly and persuasively set out by her and other noble Lords. But the Council for Healthcare Regulatory Excellence, the organisation which I chair, disagrees with her, as she knows, about statutory regulation being the solution to these problems. The CHRE has had the opportunity of speaking to many of your Lordships in two seminars organised by the Minister, so I do not need to take up time here repeating the arguments. I will say only that mechanisms already exist to deal with the difficulties which your Lordships have set out. These include ensuring that those supervising healthcare assistants take their supervisory responsibilities seriously. The Nursing and Midwifery Council is providing strong direction on this with its codes. Employers are required to ensure safe systems of work, which include giving support to healthcare professionals in delegating and supervising effectively. There is also the vetting and barring scheme, whose aim is to prevent unsuitable people from entering or remaining in the workforce.

Add to this the expense and relative slowness of statutory regulation and it seems to add up to a case showing that the increased public protection that we are all seeking can be achieved by applying existing mechanisms more firmly. We should consider other ways of making this large group of workers, low paid as they are and with a 30 per cent turnover, as we have been reminded every year, feel more acknowledged and valued. There may well be a role for a professional association with a voluntary register, but principally we must use existing processes effectively before we embark on statutory regulation.

With regard to voluntary registers, which have been mentioned so much this morning, or accredited registers, as proposed by the Bill, much work has already been done by the CHRE. We are using the term “assured registration” to distinguish it from the old notion of voluntary registers and to describe the process of organisations assuring the individuals on their register and then the CHRE accrediting the organisations and their registers, thus creating accredited registers. I remind your Lordships that the whole purpose of such a scheme is to enhance consumer protection. The standards to be met by organisations which hold accredited voluntary registers will include standards of competence, education and training, registration of complaints and information provision. I certainly do not want to argue that this is the same as statutory regulation, but for many professions it offers further safeguards for patients and public, and that is what we are all seeking.

[Lord Kakkar]

My Lords, my noble friend Lady Emerton moves a very important amendment that comes to the very heart of this Bill. The purpose of this Health and Social Care Bill is to ensure ultimately that quality is driven throughout the healthcare system and that standards are driven to the very highest levels. It seems counterintuitive that such an important group of healthcare professionals as healthcare support workers is not subject to any mandatory training or mandatory continuing professional development or, indeed, any form of statutory regulation. I suspect that many of our fellow citizens would find that a very peculiar situation, which they would not automatically recognise, when going into the hospital environment.

I would like to ask the Minister two questions, specifically with regard to proposals for ensuring strong voluntary registration of this particular group and members of other disciplines who are responsible for the provision of healthcare. The first relates to the role that the Secretary of State might play with regard to standing rules and providing guidance to commissioning groups on the action they should take and the requirements they should make of qualified providers. Will it be the case that commissioners will be in a position to demand of a qualified provider that all of their healthcare staff, be it doctors, nurses, or other healthcare professionals, are members of some form of registered regulatory scheme, be it a regulatory scheme for certain healthcare professionals or voluntary schemes for others? Will it therefore be possible for clinical commissioning groups in the future to refuse to commission from a potential qualified provider if that provider was unable to demonstrate that all the staff it employed were registered appropriately?

My second concern relates to a plurality of registers for a single discipline of healthcare worker. That seems counterintuitive: surely, if there is going to be a voluntary register for healthcare support workers, there should be a single register, not multiple ones, because multiple registers would provide less confidence to the general public. The general public should know that there is a single regulatory body and that that body has responsibilities with regard to setting certain standards, with regard to ensuring that there is appropriate training and with regard to the possibility of receiving complaints and disbarring individuals from working in that professional area.

--- Later in debate ---

[Baroness Howarth of Breckland]

My Lords, if the noble Earl thought I was being unkind to the noble Baroness, Lady Emerton, he may think that I am being even more unkind when I come to address him. I want to make it absolutely clear that I was asking the noble Baroness whether she had seen the defect in her amendment. Delegated powers would go from health professionals to the social care professionals and not from the social care professional leaders in establishments down to social care providers. That was a significant defect which I think the noble Baroness herself noted, as did other noble Lords, during the course of the debate. That was all I was raising but it leads on to this debate about the social care profession and how it is valued when compared with other professions. That is why this debate, at this moment, is crucial to social workers.

I ask the Minister this question. Is it the Government’s intent to remove the profession of social work from the nation’s vocabulary? That may sound an unkind question, but social workers are beginning to feel that they do not belong anywhere. Their name is not in any of the Bills. Indeed, their professional organisation is being wiped out, as they see it. I will not repeat the points made my noble friend Lady Meacher about some of the protections around people practising and training with clients. They have to practise alone. They are not supervised day-to-day by having someone with them who is also registered in a proper way. All of these things undermine the profession.

When the Conservatives were in opposition, the Conservative Party set up an inquiry to look into social work, taking the view that it wanted to encourage and enhance the social work profession. I was very grateful and felt that it had made a real difference to the way that social workers were valued. In that inquiry, the Conservative Party acknowledged the difficult work that social workers undertake with disruptive families, the mentally ill, children, the disabled and those with learning difficulties—in fact most of the groups in our society that other people do not wish to have to deal with day to day. Those people can be intransigent, difficult and often stubborn and social workers have to develop new skills in order to move families on into change, particularly in the present environment. That moved on to the Munro review of child protection and the hope that social workers would gain more control over their lives and the way that they worked, lessening the bureaucracy and enabling them to do more.

However, to have their designated regulatory body removed and to be absorbed into what they see as a healthcare organisation will detract from all of that. The people you meet out there who are involved in social work worry about where they stand in terms of the whole of the social care sector. If you talk to them alone, you will find that they are pretty low, depressed and fragile and that affects the way that they carry out their work. It affects the enthusiasm and joy with which social work can be carried out.

I am having real difficulty. Perhaps the clerks will recognise that. I do not want to speak at length because what I have said is to the point. I will not go through the amendments. Other noble Lords will do that in detail. Of course, a principal social worker would make a difference. In a former position, the noble Lord, Lord Laming, made a huge difference to the social work profession. It felt that someone, somewhere, was there on its behalf. We have people in the Department of Health, but they are not given the strength and status that Herbert had when he stood in that position and made that difference.

There were difficulties with the regulator, but I have just spent eight years working in another organisation that had difficulties. If you work hard enough and long enough, you can get it right. It is not right to give up in the middle and to change things so fundamentally that people do not recognise that it has anything to do with them. Certainly, social workers are not recognising that the new regulator will have anything to do with them.

I am sorry to speak so strongly and so generally but, sooner or later, someone has to speak up for those people who are doing what I call the dirty work of the nation on behalf of all of us. It may be that my cold is not helping and I am not my usual gentle self, but I feel extraordinarily strongly that, unless the Government take it upon themselves to encourage and make social workers feel valued, understand their work and differentiate them from the medical care area, we will have fewer social workers of ability on the ground and they will make more mistakes. More mistakes will mean more difficulties for children and old people, never mind the field day that the press will have, and we will be on a downward spiral. I ask the noble Earl to look at the issue that the noble Lord, Lord Hunt, is raising and to do what he can to stop that from happening.

[Baroness Pitkeathley]

It is a great pleasure to follow the noble Baroness, Lady Howarth, who I deservedly call my noble friend. I very much hope that the Minister will give her the assurances that she seeks. With regard to my noble friend’s amendments on the General Social Care Council, I take the view that we are where we are, however much I wished that different decisions had been taken. Noble Lords will appreciate that, as the first chair of the General Social Care Council, I would say that, wouldn’t I?

However, I take this opportunity to pay tribute to the councils and staff of both the General Social Care Council and the Health Professions Council for the professional and mature way that they have approached the difficult situations in which they found themselves. Their behaviour has been an example to us all and particularly, as far as concerns the GSCC, the fact that high staff morale has been maintained throughout this process is nothing short of a miracle and a great tribute to its leadership.

I agree with other Lords who have called the social work profession fragile. It needs to be promoted and defended if we are to maintain and extend the recruitment that the noble Baroness, Lady Howarth, has reminded us is so important for those people who do the difficult work in our society—which is rarely recognised until the tabloid press attacks it. I must draw your Lordships’ attention to the College of Social Work, which has just been established, which will have the promotion and defence of this fragile profession as part of its remit. It has had a difficult start, as is well known, but I believe that it has the potential to promote and support the profession to which we are all so indebted.

[Baroness Finlay of Llandaff]

My Lords, I have my name to two amendments in this group. They do not affect social work and therefore I have waited to intervene until the debate on social work had been completed.

I want to discuss two groups: clinical perfusion scientists and clinical physiologists. The clinical perfusion scientists are responsible for the single most invasive tool used in surgery today and are routinely responsible for the administration of potentially fatal controlled drugs. The numbers are small—there are only 350 clinical perfusionists—and they operate in a regulatory vacuum; they are the only non-regulated members of the cardiac surgical team. Yet their management routinely involves significant life-threatening risks to patients daily. Because they are not a regulated profession, in July 2009 the Department of Health produced a good practice guide to clinical perfusion in response to the Gritten report of 2005. It states that the Government fully recognise the need for clinical perfusionists to be regulated by statute and it draws attention to the fact that the document is an interim measure until they are subject to statutory regulation. Indeed, the document states that this has implications in law for their role in working with medicines.

Since the Gritten report in 2005, about a quarter of a million cardiac patients have had their hearts stopped for surgery by perfusionists, who use highly toxic substances and blood products. They feel that they need statutory regulation so that they can be supplementary prescribers, as there is a questionable legality at the moment around drug administration. They are in a unique position. It is this supplementary prescriber role that causes them much concern, because they would like to be assured that what they are doing falls fully within the Medicines Act. I hope that when the Minister responds he will be able to explain quite clearly precisely how, if they are not subject to a statutory register, everything they do complies fully with the Medicines Act.

As for assessing the risk and the need for a profession to be registered, the review of the Professions Supplementary to Medicines Act was debated in another place in 1999. The key test stated in that review is,

“whether there is the potential for harm arising either from invasive procedures or application of unsupervised judgement made by the professional which can substantially impact on patient/client health or welfare”.

In response to that test and in relation to clinical perfusionists, the right honourable Andrew Lansley, said:

“It seems to me that perfusionists entirely match that criterion”.

It seems odd, having had that debate and that being on the record, that clinical perfusionists are still trying desperately to argue that they should be subject to statutory regulation and feel that they are failing to achieve that.

The other group that I want to discuss is clinical physiologists. I suggest again that they fall within that criterion. They are a very skilled group of people who are often alone with patients, including children, in situations in which they are responsible for conducting sometimes complex investigations and interacting closely with whoever is the patient in front of them. For the past 10 years, they have had a voluntary register, which they feel is flawed and demonstrates the need for statutory regulation. As a group they will not gain either in status or financially by having a statutory register. They want it because they are concerned about patient safety. Their view is that there is currently no incentive to register; they are in short supply anyway and can get another job without too much difficulty.

As a group, they sent me an individual case study, which I found quite worrying. I will try to summarise for the House briefly, because this is Report. They cited a clinical physiologist who had been working unsupervised in a room alone with children and working one to one with them. Following a holiday to Amsterdam, he was found to be in possession of child pornography, prosecuted and placed on the sex offenders register. Among his papers, the police found that he was a clinical physiologist and alerted the appropriate group. They alerted the employers but discovered that even though he lost the job he was in, he was rapidly re-employed in another hospital, which they also alerted. They followed it up to find that he had changed his name and, under another name, again had sought employment. They are very concerned that this is one they know about but that there may be others they do not know about. The group does not see how its voluntary registration system gives patients and the public the protection that they ought to have.

--- Later in debate ---

[The Deputy Chairman of Committees (Baroness Gibson of Market Rasen)]

The noble Lord has not moved the amendment.

[Baroness Northover]

The noble Lord may withdraw it in a moment.

[The Deputy Chairman of Committees]

The noble Lord must move the amendment. Does the noble Lord wish to move the amendment?

[Lord Patel]

I was going to do so after I had heard the noble Baroness speak, because she interrupted my speech. I beg to move the amendment.

Health and Social Care Bill

Baroness Pitkeathley Excerpts

Thursday 8th March 2012 Lords Chamber

[Baroness Jolly]

My Lords, I have a couple of amendments in my own name in this group, and I shall also speak to amendments in the names of my noble friends Lady Tyler and Lady Cumberlege.

We welcome the decision to set up a patient and public involvement organisation and network across England based on local authority geography and with HealthWatch England at the centre. It offers the possibility of real engagement for all stakeholders and the consequent improvement of health and social care services for all. However, there are still some areas for concern in relation to HealthWatch England, whose role is to engage with all the key national players—the Secretary of State, the NHS board, Monitor, the CQC and the local authorities to which I referred a moment ago. It is charged with providing the views of those in receipt of services, their carers and other members of the public, and also with offering advice to the key stakeholders to whom I have just referred. It will thereby be influencing the Secretary of State mandate, commissioning practices, the process of registration of providers and the authorisation of clinical commissioning groups.

However, there is a deficit in the Bill. There is no representation on the HealthWatch England board of a local voice. Reports may be sent by local healthwatch organisations and they may be read, but there is no one on the board of HealthWatch England who can tell it as it is at a local level. The board, as with all other boards, is charged with making decisions involving running the organisation but, without a local perspective, it runs the risk of being metrocentric, south-east based and out of touch. Therefore, I support Amendment 224 in the name of my noble friend Lady Cumberlege and, as a good Liberal Democrat, I of course welcome elections run by STV.

The relationship between HealthWatch England and local healthwatch organisations has to be pivotal to the success of this proposal, and one certain way to cement that is with the presence on the HealthWatch England board of members of local healthwatch organisations, as we have just discussed. However, another way would be to use Amendments 229A and 234ZA in the name of my noble friend Lady Tyler. These allow for local healthwatch organisations to have a power to recommend to the board of HealthWatch England the reports that they think, from their local information-gathering, HealthWatch England should carry out, and HealthWatch England is bound to have regard to these recommendations. This should help to avoid situations such as Winterbourne and Mid Staffs. An effective local healthwatch organisation would have confidence that its advice would be considered and acted upon by HealthWatch England, precipitating early intervention and service improvement. It would also allow HealthWatch England the opportunity to spot national patterns, determine their significance and take appropriate action.

I have an amendment in my own name which concerns specialised services commissioned by the board—in particular, those for rare and complex conditions. Here, I need to declare an interest as chair of the Specialised Healthcare Alliance. I should be very grateful if my noble friend could clarify how it is envisaged that information can be collected about these services, how patients and carers can have confidence in a local healthwatch organisation dealing with issues with which they might only rarely get any concerns, and how HealthWatch England can put these scarce data together in a useful and timely manner for stakeholders. That will need careful management and crystal-clear guidance to ensure that the information gathered and the advice based on that information find their way to the board. Many people with such conditions are keen to hear the Minister’s response and I would welcome total clarity from her in that regard.

[Baroness Pitkeathley]

My Lords, I wish to speak in support of the powerful case made for the independence of HealthWatch England by the noble Lord, Lord Patel, and by noble friends on these Benches. It is a mystery to me why, in the face of a genuine commitment by successive Governments to public and patient involvement, we have made such a mess of it thus far. I am not one who looks back on the work of community health councils as some kind of nirvana. As someone who was briefly a chief officer of a CHC, I know that they were very patchy and variable in quality. However, they had a strong national voice, and I pay tribute to my noble friend Lord Harris of Haringey in that regard.

Since then, we have struggled. I think that the failure of the Commission for Patient and Public Involvement in Health has made successive Governments frightened of setting up one of these national organisations. It has put them off having a national body to support local groups, to help them to develop successfully and to help them when they are in difficulties, as well as provide a national, challenging voice for patients. Will HealthWatch England, as currently envisaged, be this missing national body? I am afraid that at present the answer is certainly no. As a committee of the CQC—an organisation for which I have the highest regard—it will not be independent or accountable to the patients and public it represents, and its links with local healthwatch organisations, which we will discuss later, will be very variable and often not sufficiently robust for them to be in full receipt of the amount and range of information that they need. We simply must have a proper governance structure with an independent, publicly appointed chair. Surely the independence of the whole organisation is essential to how it will provide the strong voice for patients that everyone involved say they want.

[Lord Warner]

My Lords, it gives me great pleasure to follow that sterling contribution by my noble friend Lady Pitkeathley. The real problem with the Government’s approach is that they really have not properly defined the functions of this body. One of the great strengths of this amendment is that it sets out what the functions of a truly independent body should be in this area. I make no defence of the previous Government’s attempts to wrestle with this idea, but I think that we have continued to go backwards in this area since the days of community health councils, despite their patchiness.

I was very optimistic when the Government made their first announcements about healthwatch, and I was a great supporter of the brand name that they had created, which I thought was very powerful. Unfortunately, the functions that they have given it and the way they have set it within the CQC do not enable it to live up to the strength of that brand.

I was full of admiration for the creative way in which the noble Baronesses, Lady Cumberlege and Lady Jolly, loyally tried to make the sow’s ear a bit more of a silk purse. However, it really does not cut the mustard. I think that we need to pay attention to the points made by my noble friend Lord Whitty, who emphasised very well the extent to which the model that the Government are pursuing has failed in a number of other areas of public policy. The Government should learn from that evidence and rethink this matter before we get to Third Reading.

I have one other point which concerns the rather spirited exchange that we had in Committee with the noble Baroness over the issue of campaigning. I shall return to that for a few moments. The whole point of having a body like healthwatch is to enable it to join forces with other people when there is a serious challenge to the public interest and to patients’ interests in this area and allow it to campaign. I cannot see how it can be very easy for a committee of the CQC to join in that campaign. I asked the noble Baroness whether it would be able to campaign and, to her great credit, she said that yes, it would. Most of us who have knocked around the public sector for any length of time would find it very difficult to believe that a committee of the CQC would be able, despite what the noble Baroness says, to join in a campaign that was highly critical of the CQC. We need to be clear on whether it can campaign; and if it can, I would like, as the noble Baroness said, a very convincing explanation of how it will be able to when it is sitting within the structure of the regulator and it is the regulator's deficiencies that it is campaigning against.

Health and Social Care Bill

Baroness Pitkeathley Excerpts

Tuesday 6th March 2012 Lords Chamber

[Baroness Pitkeathley]

My Lords, I was delighted to add my name to this important amendment which builds on several amendments we have discussed in your Lordships’ House with regard to the integration of health and social care. The central point of the amendment is to place a duty on the Secretary of State to secure improvement in the quality of social care services provided by local authorities. It goes on to set out the means of doing so.

These proposals are based on those of the Dilnot commission, of which my noble friend Lord Warner was such a distinguished member and about which there is such consensus among all those who work in or are in receipt of social care. If only the coalition Government had managed to achieve such a consensus about all the proposals in this Bill, we would have saved a lot of time and be a lot more content. There is consensus around the proposals and everybody understands what the social care system is in need of. As we have heard from my noble friend, the system is starved of cash, failing to meet the volume of need, unfair—a lottery—and confusing and difficult to find your way around, especially if you are frail, elderly and confused.

The existing consensus is that the future funding of social care has to be based on a combination of individual and state responsibility and contribution, and that we must achieve a lasting settlement. We have mentioned many times before in your Lordships’ House that the Health and Social Care Bill fails to address the most pressing of all health problems: how to deliver affordable and effective social care for our growing elderly population—a view endorsed, I remind your Lordships, by the Health Select Committee in a recent report.

It is extremely worrying that rumours are circulating that the White Paper on social care, responding to both the Dilnot proposals and the Law Commission proposals about legislative reform in this area, is to be delayed. This would be a huge disappointment as well as a missed opportunity. Moreover, it would renege on the commitment given by the Minister for social care in another place when he said only four months ago that,

“social care has languished and rested in the ‘too-difficult-to-do’ box for far too long. We are the Government who are committed; we see the urgency and the need”.—[Official Report, Commons, 10/11/11; col. 181WH.]

I hope that the Minister will today repeat that commitment in response to this amendment.

We should remember, too, the advantages which would be delivered by accepting this approach. We would spend existing resources—which everybody agrees are short—better. It would improve integration of health and social care systems. When people’s need for social care is not met, they turn to the NHS—resulting in increased numbers of emergency admissions or delayed discharges. The inconsistency between fully funded NHS care and means-tested social care hampers delivery of an integrated care system. Recent statistics from the Department of Health show an 11 per cent rise already in the number of hospital bed days lost to so-called bed blocking, so that costs have risen extremely fast.

In addition, the rights and responsibilities of individuals and agencies would be clear to the public if the Government accepted this approach. If people were clear about their future personal liability, they could plan how they would meet care costs up to the level of the cap, wherever that were placed. We would also stimulate the care market to provide more choice for families and incentives for business. The Dilnot report and its proposals have been called a once-in-a-lifetime opportunity. We cannot and should not miss that opportunity. I support the amendment.

[Lord Skelmersdale]

My Lords, the House seems to have gone remarkably silent after those two introductory supporters of this particular amendment. As some of your Lordships will remember, when I returned from Northern Ireland as the ex-Minister responsible for health and social services, I came as a great fan of combined health and social services. Yet I discovered in my experience there that it would never, ever work unless you had one organisation in total and utter control. This may seem like a Second Reading speech, but it is not intended to be. The Secretary of State mentioned in the amendment means any Secretary of State, and currently we have two Secretaries of State. That is why the notable ambitions of this amendment—and they are notable—will always fail. Therefore, I encourage my noble friend, until a higher authority than himself, senior as he is, gives the imprimatur to take social services away from local government, to resist this amendment.

Health and Social Care Bill

Baroness Pitkeathley Excerpts

Wednesday 29th February 2012 Lords Chamber

[Lord Beecham]

My Lords, as the noble Baroness might have said, but did not quite, Public Health England has been conjured out of the ether rather than having been approached in the way one might normally have expected as regards a subject to be included in the Bill. The body constitutes a significant change of policy and direction which ought to have brought before us by the Government and not left to the noble Baroness and others to raise as a consequence of their failure to do so.

It is instructive to look at the comparison between the executive agency model which the Government have chosen to adopt and the special health authority model to which my amendment refers. I say immediately that I agree entirely with the noble Baroness’s analysis of the situation as it will obtain under the Government’s proposals—not legislative proposals—in terms of the independence of the organisation. I share many of her doubts about other aspects, including the impact on the income which is currently derived—to the extent of, I think, £150 million a year—by the existing organisation: namely, the Public Health Agency.

The critical definition of the role of Public Health England was provided in a debate in the House of Commons by the Minister of State, Paul Burstow, who said:

“In legal terms, Public Health England and the Secretary of State are the same thing, and Public Health England will not be provided for in primary legislation”.—[Official Report, Commons, 7/9/11; col. 412.]

That set the tone of what has subsequently emerged as the Government’s policy. There are Cabinet Office guidelines on the attributes of executive agencies. They are effectively threefold. The first is that an executive agency is independently accountable within the government department. Secondly, an executive agency has to be financially viable. Thirdly, and critically, executive agencies should be,

“clearly designated units … which are responsible for undertaking the executive functions of that department, as distinct from giving policy advice”.

One would imagine that the giving of policy advice in the area of public health would be a prime function of the body charged with the responsibilities that we anticipate will fall to Public Health England. As an executive agency, it would not be in a position to offer that critical element which is so indispensable to a proper development of policy and monitoring of policy in this arena.

As to the structure of the organisation, the noble Baroness has rightly referred to the curious proposal that the chief executive will establish an advisory board. Public Health England’s Operating Model states:

“The Chief Executive will establish an advisory board to provide external challenge and expertise”.

I stress “external”. The most recent document, with the snappy title Building a People Transition Policy for Public Health England, states in terms that:

“Staff in Public Health England will be civil servants whose conduct will be governed by the Civil Service Management Code”.

It goes on to say, as the other document indicated, that there would be,

“an advisory board to provide external challenge”,

and the,

“current intention is that the chief executive will chair the board, which will”,

as the noble Baroness indicated,

“include at least three non-executive members”.

That is the model that the Government seem to prefer. However Public Health England will have a huge role. Its incorporation within the department will virtually triple the size of the department. It will have enormous responsibilities, ranging from managing disease outbreaks to running specialist reference laboratories and regional laboratories, and providing—critically—information and intelligence support in respect of, for example, cancer registries and public health observatories. These are massive responsibilities and there will be no legal or constitutional separation from ministerial control.

In this arena, as we debated and determined when we were talking about the position of directors of public health within local government, there is a critical need for independence. I am grateful to the Government for reinforcing this—it is to be seen in the arrangements made for local government. However, what is good for local government in this respect does not appear to be good for central government because that independence is patently lacking. I will allude to the position of staff as civil servants a little later.

Contrast that model of the executive agency with the position of special health authorities. They are defined as,

“health authorities that provide a health service to the whole of England”.

They are exemplified by the National Blood Authority, and,

“are independent, but can be subject to ministerial direction”.

There are 10 such bodies at the moment, including the Health Research Authority, the National Treatment Agency and the NHS Litigation Authority. Ironically, they will include the NHS Commissioning Board when it is formally constituted. The employees are public servants, not civil servants, and are not therefore subject to the Civil Service Code. That has some interesting implications.

I must refer to the recent case of Professor John Ashton of Cumbria—a distinguished director of public health who had the temerity to join 400 of his professional colleagues in writing a letter, under the auspices of the Faculty of Public Health, critical of the Government’s proposals in this area. He received a rebuke from the primary care trust that employs him. I do not know whether or not he is right, but he believes that it may have been instigated by the department. I know that the Secretary of State has indicated that he had no role in it, and the noble Earl seems also to be indicating that the department had no role. I accept that of course, if that is what is being said. However, it is interesting that the primary care trust nevertheless felt obliged to take the step of rebuking Professor Ashton and calling him to a meeting. If that is indicative of how a serving, distinguished and leading public servant in the realm of public health is treated under the present dispensation, one wonders what would happen under the regime that is being established, which will be even less accepting of the independent nature of the role of its chief officers.

The question of independence remains very much at issue. I concur with the questions raised by the noble Baroness in Committee about income-raising. We received some rather broad assurances that all would be well. Half of the Health Protection Agency’s income is raised externally—as I said, in the region of £150 million. The Government said that they would set up a mechanism to ensure that income-generation activities of the Health Protection Agency can be maintained. When the Minister replies, perhaps she can tell us how far the Government have got in developing proposals to establish that mechanism.

Finally, when we were debating this in Committee, the argument was advanced—it has also appeared in other places—that because the function is not limited to England, because there are implications for disease control and the like which cannot be confined within the national borders and potentially reach to the territories of the devolved Administrations, somehow we cannot establish it as a special health authority. That seems to me to be hardly an insuperable obstacle. Have any approaches been made to the devolved Administrations to see whether they would have any objection to there being a special health authority? I should have thought that they might prefer a special health authority, given that it would not be, as Mr Burstow, described it, simply a manifestation of the English Secretary of State. I may be wrong, but I wonder whether the Government have taken any steps to ascertain the views of the devolved Administrations. If it were not unacceptable to them, I can see no objection to creating a special health authority for that purpose.

Although I warmly endorse the thrust of the amendment moved by the noble Baroness in having an independent chair, I would go a step further to have a completely independent special health authority in place of what the Government propose. She clearly wants to discuss matters further. I hope that the Minister can give an assurance that she will take the matter away to consider it. I apprehend that it is unlikely that the noble Baroness will seek to take the opinion of a fairly empty House tonight, but there might be an opportunity at Third Reading. This is too important a matter to be left in abeyance for a decision to be reached by default.

I commend the amendment moved by the noble Baroness, but seek to extend it in the way that my amendment describes. I beg to move.

[The Deputy Speaker (Baroness Pitkeathley)]

It may be for the convenience of the House if I point out that, as Amendments 162A and 162B are amendments to Amendment 162, we have to dispose of them first and then come back to Amendment 162.

[Baroness Masham of Ilton]

My Lords, I support Amendment 162, moved by the noble Baroness, Lady Cumberlege. It is vital. The Health Protection Agency is admired across the world. It does vital work and important research. We cannot afford to lose something which is so effective. I see no reason why it should not have an independent chairman. It is also a very interesting idea to have a special health authority. When we were taking evidence on the Select Committee on HIV, the Health Protection Agency said that there were many concerned people not just in England but across the world, because they depend on our advice. That is why independence is so important. We cannot lose something so good.

Health and Social Care Bill

Baroness Pitkeathley Excerpts

Monday 27th February 2012 Lords Chamber

[Lord Patel]

My Lords, I have put my name to Amendments 38C and 143 and support them very strongly. They cover the issues that we raised in Committee and which need to be addressed.

The Government’s intention in the Bill is clearly stated: they want to see better quality of care and outcomes, particularly for patients with long-term conditions. I spoke at length about this in Committee and will not repeat myself. However, in brief, a patient who suffers from a long-term condition will get better care and outcomes only if that care is individualised and integrated from primary care, through acute care to community care. If we are to do this, we need some guidance in the Bill itself as to who will be responsible, how it will be done, who will give the guidance and how it will be monitored. I do not mean by Monitor, but how whether it is happening will be monitored. It is for this reason, if no other, that I strongly support these amendments. I agree with my friend, the noble Lord, Lord Warner, about hoping that the Minister will be able to accept these amendments or the principles behind them; and, if he cannot accept them, that the Government support them by tabling their own amendments at a later stage.

[Baroness Pitkeathley]

My Lords, I, too, will speak strongly in support of these amendments, to which I have added my name. In spite of my major misgivings about the content of the Bill when it was originally published, I remember being delighted by its title because it had “social care” up there with “health”. Did this mean, I thought to myself, that at long last health and social care were to be given equal status? At long last, was there to be a proper recognition that the patient experience of being ill, disabled or in need of care is an integrated one? The Bill was supposed to be about making the patient experience better—less confusing, and more effective and efficient from the point of view of the patient—so I was hopeful.

In more than 40 years of working at the margins of health and social care, I have seen two experiences constantly repeated. The first is of patients always being surprised, distressed and horrified by the lack of integration between health and social care. Since they cannot put their own needs into two separate boxes, they are surprised that the services seem to be provided in separate boxes. They are further distressed by having constantly to give their details and history to different people, having to undergo unnecessary repeat tests and yet still being left alone or reliant on their families to negotiate between the NHS, social care agencies and local authorities, not to mention voluntary and private sector providers.

The second experience which has been constant in my life is the seeming commitment of all those who work in the system to how important integration is to the delivery of proper patient-centred care. Indeed has anyone in your Lordships’ House or anywhere else ever heard any professional say that there are benefits to care which is not integrated? Yet that is what we continue to deliver and there seems little hope of the Bill in its current form rectifying and ensuring a joined-up approach. Indeed, I fear for the practice manager or the social worker who has to interpret the new diagrams of the system to an elderly and confused patient or client.

My noble friend quoted the Health Select Committee, which said:

“Although the Government has ‘signed up’ to the idea of integration, little action has taken place to date. The Committee does not believe the proposals in the Health and Social Care Bill will simplify the process”.

The committee further said that the reforms in the Bill were built on the hope that GPs, hospitals and local authorities will respond to payments for working together. These amendments are about more than hoping for the best. They make practical proposals, first, about defining integration which, as the Law Commission found, is not easy. It will surely not be difficult to agree, as the Law Commission did, around contributing to or promoting the well-being of the individual. That would cover not only health and social care but housing too. That separation, as your Lordships are well aware, has always been a problem.

The proposals about annual reporting and business planning to check progress are also very practical and taking into account the levels of integration in setting tariffs is also very important. It is of the utmost importance that we take the opportunity given by the Bill to move the reality of integration forward in a way which will make a radical difference. The benefits to the patient, the client and the carer are obvious but there are benefits to the community and society which are similarly significant, since integration clearly delivers more effective and efficient care. There is lots of research evidence about this. For example, Turning Point identified that for every £1 spent on integrating health, housing and social care, £2.65 was saved. This is not only better for patients but provides better value for money. What is not to like in these amendments? I hope the Government will accept them.

[Lord Mawhinney]

My Lords, it would be very courageous for anyone in your Lordships’ House to argue that there was no benefit to the patient in trying to have as integrated a service as possible. I am not that courageous. It is a good place to start. Having said that, I do not believe that these amendments are the answer or that they move forward the argument for integration. I searched through these proposed new clauses and I find no mention of any legal responsibility on the local authority, the social care agencies or anyone else. They are entirely directed to health bodies. That imbalance struck me as being a pretty poor starting point if you are genuinely interested in trying to produce integrated services.

Your Lordships will know that, even before the introduction of the Bill, there were various attempts to integrate services in various parts of the country. I happen to be a reasonably well-informed individual in respect of one of those attempts. It is one thing to say to the PCT, the cluster, or whatever is the latest development in that area that it has responsibilities to integrate with the local authority, just as it will be a different thing to say that a local commissioning group has to integrate with the local authority if some attempt is being made legally to define the role of the health component but there is no commensurate attempt to deal with the legal framework with regard to the providers of social care. I know of one example of attempted integration in this country that is foundering because the health component is seeking to shift its deficit on to the local authority. Sometimes the quality of those who serve in one is so different from the quality of those who serve in the other that no right-minded person who was dealing with his or her own money would invest in a partnership that was as skewed as those that exist up and down the country.

I started where I did because I do not wish to be interpreted as being against useful, appropriate and constructive forms of integrated provision. I have taken a view throughout the Bill that it ought to be for the benefit of the patient. It would be courageous to suggest that some appropriate form of integration would not be of benefit to the patient. However, these skewed and flawed amendments are not helpful and certainly do not beat a path to the future for the benefit of patients.

Health and Social Care Bill

Baroness Pitkeathley Excerpts

Monday 13th February 2012 Lords Chamber

[Baroness Oppenheim-Barnes]

My Lords, I am obliged to my noble friend Lord Faulks for provoking me into thanking him for having read the proceedings of our earlier debate on a similar amendment, in which I spoke at length about the total impossibility of someone with money and influence bringing a case against a doctor or a hospital in a situation that was completely black and white. I went into this detail only to convince those who—quite rightly—want this candour that it will not result in an “open sesame” for bringing cases in which a mistake has been made or completely bad treatment has been given.

I would also say that I wish anyone trying to deal with the General Medical Council the best of British luck, because it is not easy. It is a long process, and it involves a great deal of information being given. Even when the consultant involved has said, “I am very sorry, I have made a mistake, I have failed”, the GMC still does not find it necessary to criticise that surgeon in any way at all.

On the amendment, my noble friend the Minister was kind enough following the last debate to circulate to those who had participated a note from the NHS giving details of the steps that it takes after a mistake has been discovered: dealing with patients in counselling, apologising, all the important things that we would expect it to do. However, one thing was missing, and I hope that my noble friend will feel kind enough to grant it; it did not say that in such cases the NHS was required to circulate throughout the health service what accident had happened or what mistreatment had taken place, so that it could warn in advance that special care must be taken in the future.

[Baroness Pitkeathley]

My Lords, the noble Lord, Lord Faulks, speaks with his extensive legal experience, which I certainly could not match, but I have very extensive experience of working with patients and their families. It is in that respect that I support this amendment. I particularly support what noble Lords have said about seeking culture change in the NHS.

One thing that gets in the way of that culture change is the anxiety about why patients want candour and the truth. My experience is not that they seek redress or even want to pursue legal action—time and again any consultation with patients will show you that that is not their aim. Their aim, almost always, is to achieve closure after a distressing incident. What a patient said to me a year or so ago is typical: “I just wanted them to admit that something had gone wrong and say sorry. I knew it could not bring my brother back but it would have helped us come to terms with it”. That is what patients are seeking and that is what this amendment will help to achieve. We can all agree that if we are to achieve more culture change, we must move towards a greater degree of openness throughout the NHS.

[Lord Newton of Braintree]

My Lords, I am tempted to chip in—rather unwisely, no doubt, as usual—by the last two speeches. If it does not seem paradoxical, I must say that I agree with almost every word of both of them.

I certainly share the view of the noble Baroness, Lady Pitkeathley, and have some experience in having chaired three NHS health trusts since 1997, that there are too many cases in which an apology, together with an assurance that action will be taken to make sure it does not happen to anyone else, as well as achieving closure in the individual case would have made a material difference. I would add that ingredient to what she said. Indeed, I could give examples of where I spent hours of doing exactly that in one of my capacities with some parents who had experienced a tragic loss. I endorse that and I think that she is right. I also endorse her comments about not quite recognising this as a common feature in health trusts.

Health and Social Care Bill

Baroness Pitkeathley Excerpts

Wednesday 8th February 2012 Lords Chamber

[Lord Laming]

My Lords, may I briefly add my thanks to the Minister and the Constitution Committee? Its second report was particularly helpful. To follow the point made by the noble Baroness, Lady Williams, it is right to see Amendment 5 in the context of some coherence over how this accountability will work, not just at ministerial level but at board level. There will be further amendments. At this stage, suffice to say that the Constitution Committee looked at these matters in the broadest possible way to ensure that—whether in terms of autonomy or commissioning—there would be a coherence to the way in which accountability would continue to be established in the National Health Service; and, in particular, that those responsible for commissioning and other important work follow through their tasks in relation to ministerial accountability to Parliament.

The second report of the Constitution Committee was a model of how such matters can be dealt with coherently, succinctly and very clearly. We are indebted to the Minister for giving us the opportunity to consider that more carefully; and to the Committee for its work, which took us forward enormously and has brought us to where we are today. I am grateful and I support the amendment.

[Baroness Pitkeathley]

My Lords, far be it from me to cast a pall over the House of Lords at its best. I join others in being glad about the consensus and in congratulating the Constitution Committee. I also congratulate the Convenor on the part that he played in getting the consensus. It is a privilege to follow him.

I join the noble Baroness, Lady Williams, in hoping that the consensus can continue but I have to remind the House of how the Bill is viewed out there. It is deeply unpopular with many of the people who will be required to make it work. They will make it work because that is what the workforce of the health service does and always has done in the most difficult of situations. However, it is looking to us to make those difficulties as few as we possibly can. Therefore, in congratulating ourselves on reaching where we have on this issue, let us remember the task before us.

[Baroness Young of Old Scone]

My Lords, I am afraid that I will be even more discordant. I do not want to denigrate the congratulations that have been offered to the noble Baroness, Lady Jay, and her colleagues and the process that has been gone through to reach agreement on this amendment. However, I share the view of the noble Baroness, Lady Pitkeathley, that we must not forget not only how deeply unpopular the Bill is but that it is flawed.

I had not intended to speak on this amendment but I cannot let the moment pass as I think that the noble Baroness, Lady Jay, referred to a spirit of improvement that she was seeking in moving this amendment. However, we have to remember that the improvement is a bit like trying to paint the face of a harlot; at the end of the day, it is still the face of a harlot, no matter how improved. We are seeing real impacts on healthcare in this country as a result of the Bill, as we speak. I come from a background of having run health services for 20 years. I have also been the regulator for health and social care and am now part of a patients’ organisation. Patients are telling me that we are seeing the fragmentation of responsibility for the commissioning of healthcare and that services are suffering as a result of the financial squeeze; for example, diabetic specialist nurses are disappearing and patient education is being cut. The things that are important for the quality of care are being removed.

I am experiencing a huge loss of momentum in getting any change implemented in the care for people with diabetes. Whenever I speak to the Secretary of State, he tells me that it is no longer his responsibility and that I should talk to the NHS Commissioning Board. However, when I speak to the NHS Commissioning Board, staff say, “We are still working out how we do this”. When you talk to clinical commissioning groups, they are still not clear about the framework in which they are operating. Therefore, we are losing one, two or three years of headway on issues where there needs to be real improvement for patients.

Because of the preoccupation with reform, we are seeing a lack of real focus on the task in hand, which is how we make the health service more efficient. The Minister and the Secretary of State have repeatedly told me that these reforms will deliver that necessary improvement in care and efficiency. However, my experience over 40 years leads me to believe that that is not the case. In saying that, I am not making a political point; I speak from my knowledge of what is happening in healthcare. We will continue to try to improve the Bill because we are good and honest toilers in the House of Lords, but we are trying to improve something that is deeply flawed.

Health: Stroke Care

Baroness Pitkeathley Excerpts

Monday 30th January 2012 Lords Chamber

[Baroness Pitkeathley]

My Lords, I thank my noble friend not only for securing this debate but for the wide-ranging way in which she introduced it. Her personal experience as a carer enriches our debates, and it is on the care experience that I want to focus in the few moments available to me.

I want to bring to your Lordships’ House Olivia, who looked after her husband, Ronald, when he suffered a massive stroke. She said:

“He spent four months on a stroke ward where little was done to rehabilitate him; he was lucky if he got 10 minutes of physio a day and even less input from speech and occupational therapists”.

She felt that the care he was receiving was so poor that she would take him home, and she thought that she would be better off doing that. Within days of taking him home, she felt that his condition had improved, and Ronald also received support there from district nurses and a physiotherapist. Olivia had to fight to get information and support. She said:

“It took months to determine what help we might be entitled to. I was passed from department to department, we were subjected to assessment after assessment and review after review, answering the same questions over and over again, the various departments procrastinating over every decision”.

She is still convinced that she made the right decision to care for Ronald at home, but the lack of support for her meant that she had to give up paid work to care, and suffered then from stress and depression, providing round-the-clock care. The impact of both people losing their incomes forced them to sell their home and go into sheltered rented accommodation. Your Lordships may think that that is an extreme example but it is not. It is a common experience in some families.

One of the great difficulties about a sudden onset condition such as stroke is that carers have little time or opportunity to plan for caring responsibilities. Intensive support, or reablement as we often call it now, following hospital discharge, can make the difference between a more rapid recovery and the need for ongoing long-term care. Not only is it crucial to support the independence of the stroke sufferer but for family members, too. Many families can juggle short periods of intensive caring and ongoing lower levels of support with paid work. They are very willing to do that, and to juggle it with other family commitments. But the lack of rehabilitation services can extend the length and intensity of the caring responsiblities of families. Evidence from Carers UK shows that many families are at risk of longer-term penalities: falling out of work and risking isolation, ill health and financial hardship.

In addition to support with personal care and mobility, stroke survivors often experience communication difficulties and changes in behaviour. That, too, can lead to stress and strain in the caring relationship. When the Minister responds, I hope that he will acknowledge the importance of caring families and address specifically the latest developments to support the Olivias of this world, as well as the Ronalds, who are the sufferers, particularly in respect of the unacceptable variation in levels of support available to them.