Autism

Baroness Browning Excerpts

Monday 17th June 2013 Lords Chamber

[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]

Baroness Browning Excerpts

Monday 10th June 2013 Lords Chamber

[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]

Baroness Browning Excerpts

Tuesday 21st May 2013 Lords Chamber

[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.

Mid Staffordshire Foundation Trust Inquiry

Baroness Browning Excerpts

Tuesday 26th March 2013 Lords Chamber

[Earl Howe]

I understand the noble Lord’s concerns and those of the people of Stafford. Unfortunately, this trust is losing a substantial amount of money. That is not a situation that anybody can be relaxed about, which is why Monitor has taken the action that it has. One of the tests by which any trust administrator’s report will be judged will be whether the solution offered delivers high-quality care and the prospect of good health outcomes to the patients of the area. This is not just a pounds, shillings and pence exercise; it is an exercise that is necessarily looking at services across the piece to see how they can be better and more cost-effectively configured to ensure that high-quality care is maintained.

[Baroness Browning]

My noble friend will be aware that the Mental Capacity Act was not mentioned or used at Winterbourne View and that we have seen one too many reports from Mencap about the deaths on hospital wards of young people who have a learning disability or autism. In the next 12 months, this House will carry out post-legislative scrutiny of the Mental Capacity Act. Will my noble friend ensure that his department is not just a passive observer of that process but communicates with those on that committee to ensure that people on hospital wards who lack capacity, albeit a fluctuating or temporary lack of capacity, are not only spoken to but treated like any other patient?

[Earl Howe]

My noble friend is right to raise this issue, and I pay tribute to the work that she has so consistently done to improve the lot of those with autism. I undertake to write to her about this, but I can give her the general reassurance that the Department of Health will certainly be involved in the scrutiny of these measures, as will the NHS Commissioning Board. I want to ensure that we learn the right lessons from the actions already taken.

NHS: Liverpool Care Pathway

Baroness Browning Excerpts

Tuesday 15th January 2013 Lords Chamber

[Earl Howe]

Yes, my Lords. The LCP, if I may use the abbreviation, is internationally recognised good practice as a framework for managing care for people in their last few days or hours of life. It was created as a way of bringing hospice-style care into hospitals and helping staff who may not be palliative care specialists to provide appropriate care to allow people to die in comfort and with dignity. However, we have consistently made clear in guidance for implementation that the pathway cannot replace clinical judgment and it should not be treated as a simple tick-box exercise. I am afraid that, from the complaints that have been received, that sometimes appears to be what has happened.

[Baroness Browning]

My Lords, I, too, welcome the appointment of the noble Baroness, Lady Neuberger; I am sure that we all have confidence in her as chair of this review. Can my noble friend confirm that the terms of reference will specifically make sure that a direct comparison is made between what is appropriate in terms of the expertise and continuity to be found in the hospice movement and the rapid changes of staffing, including bank staff used in general wards of general hospitals?

[Earl Howe]

I am grateful to my noble friend for drawing attention to a very important point. It has always been emphasised in connection with the LCP that to ensure that it is used properly it is important that staff receive appropriate training and support, and that relevant education and training programmes are always in place. In view of the degree of staff turnover to which my noble friend refers, I am confident that the noble Baroness, Lady Neuberger, will have that fact in her sights.

Care Services: Winterbourne View

Baroness Browning Excerpts

Monday 10th December 2012 Lords Chamber

[Earl Howe]

My Lords, the noble Lord is not out of date, because this is a key issue and I am grateful to him for raising it. It is crucial that staff who work with people with challenging behaviour are properly trained in essential skills. Contracts with learning disability and autism hospitals should be dependent on assurances that staff are signed up to the proposed code of conduct that the Department of Health has commissioned from Skills for Health and Skills for Care and that there should be minimum induction and training standards for unregistered health and social care assistants. Those standards should be met. I would say that owners, boards of directors and senior managers of organisations that provide care must take responsibility for ensuring the quality and safety of their services. There are requirements set out in law in that regard, and they include safe recruitment practices, which necessarily involve selecting the people who are suitable for working with people with learning disabilities, autism and challenging behaviour, and appropriate training for staff on how to support people with challenging behaviour.

From April next year, Health Education England, which is the new, national, multi-disciplinary education and training body, will have a duty to ensure that we have an education and training system across the piece but including a system that can supply a skilled and high-quality workforce for this sector.

[Baroness Browning]

My Lords, my noble friend said that families’ concerns were ignored, but would he accept that there is huge push-back across all the public services involved with this group when anyone who is a family member of someone over the age of 18 tries to make representations on their behalf? I experienced that again personally, yet again, only this week. Paragraph 3.9 of the department’s response makes reference to:

“Where an individual lacks capacity and does not have a family to support them, the procedures of the Mental Capacity Act 2005 should be followed”.

I am appalled at the way in which the Mental Capacity Act, an excellent piece of legislation, is virtually ignored by many professionals who not only do not advise people of their rights under the Act but just ignore it. If ever a piece of legislation cried out for post-legislative scrutiny, it is this Act of Parliament. It is a strong, good piece of legislation but it needs to be enforced; we need more people to know about it and to use its powers to protect the vulnerable.

[Earl Howe]

My Lords, my noble friend is absolutely right. Over the coming months the Department of Health will be working with the Care Quality Commission to agree how to improve the understanding of the deprivation of liberty safeguards and to ensure compliance with them. We are very clear that this work is necessary to protect individuals and their human rights. We will report the results of that work by spring 2014. During 2014 the Department of Health will update the Mental Health Act code of practice, and this will also take account of findings from the review.

Autism

Baroness Browning Excerpts

Wednesday 5th December 2012 Lords Chamber

[Earl Howe]

My Lords, I am grateful to the noble Lord and I am quite sure that we in England can learn from what is going on in both Wales and Scotland in this area. However, we can take some encouragement from the National Audit Office memorandum earlier this year, which stated that considerable progress had been made in the two years since the strategy in England was published. Twenty-four of the 56 commitments had been implemented, and action was under way in response to the remainder.

[Baroness Browning]

My Lords, does my noble friend agree that if we are really going to achieve equality for the autistic community, we need to start looking now at the sort of services that they require when they become much older and frailer? It would be a tragedy if we improved services for children and adults but, when they become old and frail and are no longer able to maintain independent living, even with support, they are then segregated from the rest of society.

[Earl Howe]

My noble friend is right, which is why the existing statutory guidance extends not only to local authorities but to the NHS; it is unique in that regard. The strategy is about integrating care across the NHS, social care and all other local authority services, and its focus must be on putting people with autism at the centre of any plans to improve their own lives.

Care and Support

Baroness Browning Excerpts

Wednesday 11th July 2012 Lords Chamber

[Earl Howe]

First, I thank the noble Lord for all that he did as a member of the triumvirate of the Dilnot commission. There is no doubt that we owe him and his fellow commissioners an enormous debt. I am grateful to him for his kind remarks about this set of announcements. We propose to introduce deferred payment without the cap necessarily being in place. We believe that that can be done. I understand the direction from which the noble Lord comes, but a system that obliges local authorities to offer deferred payment where certain eligibility criteria—yet to be defined, admittedly—are met is deliverable in the absence of a cap. That is not to say that we do not wish to work hard to define what that cap should be.

On the noble Lord’s second question about the dead hand of the Treasury, I would not characterise my esteemed colleagues in that venerable department as dead hands. However, I acknowledge his central point about affordability. That is why we have felt it necessary to defer final decisions on how the funding of the Dilnot principles will be worked through until the next spending review. That inevitably means that my colleagues in the Treasury will have a direct interest in the result; it would be strange were it otherwise. Nevertheless, that does not preclude creative and constructive discussions between our two parties.

[Baroness Browning]

I welcome my noble friend’s Statement, but does he accept that there is still a significant challenge in providing appropriate packages of care, particularly for elderly people, on discharge from hospital following an emergency admission? This relates to the type of care required when there is a significant change in needs and people are unable to return to their home, or sometimes even to a residential home. There is a transition, but some of those people could make more progress in their recovery. I am thinking of stroke patients in particular. I hope the Minister will be able to reassure me that these changes will include looking again at this group.

[Earl Howe]

I agree with my noble friend. Only last week, I talked to people at the Norwich and Norfolk University Hospital who emphasised that very point. Very often, the absence of packages of care that are tailored to the needs of the individual results in delayed discharge from hospital and often a deterioration in the condition of the patient. That helps no one. There is therefore a burning need for commissioners, providers and those providing care in the community to work together to define appropriate packages. I fully agree with my noble friend that those who have had strokes are particularly in need of the kind of packages that can best assist them when they move back into their own homes. This is an area that is crying out for further work. We hope that it will flow from the creation of clinical commissioning groups and health and well-being boards at a local level.

Care Homes

Baroness Browning Excerpts

Wednesday 27th June 2012 Lords Chamber

[Earl Howe]

My Lords, my noble friend is right to call that matter into question. My department will be working with the NHS Commissioning Board Authority to agree by January next year how best to embed quality of health principles in the system using NHS contracting and guidance. Those principles will set out the expectations of service users in relation to their experience. We are taking a range of other action—the 14 national actions to which I referred in my initial Answer—which I would suggest my noble friend looks at. We are clear that there is a need not just for providers but for everybody in the system to focus on their responsibilities and to work together to drive up standards in the way that we all wish to see.

[Baroness Browning]

My Lords, given the number of years that have passed since we saw the Mencap report Death by Indifference, and the fact that these reports show an inadequate level of improvement, I find myself in the strange position of asking my noble friend if he would please reconsider a proper register, professionally supervised by those working in the care industry?

[Earl Howe]

My Lords, as my noble friend knows, we committed in the Health and Social Care Act to facilitate a voluntary register for care workers and health workers. We believe that the system should be tried before we think about any statutory regulation. However, I understand the urgency and strength of feeling around this issue and it is a matter that we will keep under regular review.

NHS: Liverpool Care Pathway

Baroness Browning Excerpts

Wednesday 20th June 2012 Lords Chamber

[Earl Howe]

Yes, my Lords. To ensure that it is used properly, the Liverpool care pathway emphasises the importance of staff receiving appropriate training and support in its use as well as accessing relevant end of life training and education programmes. A range of activity has been undertaken to support staff education and training and end of life care by the national end of life care programme and others. That includes the development of an extensive package of e-learning, which is free to access for health and social care staff.

[Baroness Browning]

Will my noble friend tell the House whether there is ongoing monitoring of patients who are sedated but not hydrated? Looking at people who are dying can take a long time. My noble friend mentioned a few hours or a few days. If you are not hydrated for days on end, inevitably death will come. What analysis is there?

[Earl Howe]

My Lords, one key feature of the Liverpool care pathway is regular monitoring of the patient—every four hours at a minimum, I believe. That regular monitoring process gives clinicians and nursing staff an opportunity to reassess the patient’s condition to see whether they are in fact responding to treatment, whether they require a different form of treatment or whether the treatment they are being given is unduly burdensome. That regular monitoring should, I think, take care of the point my noble friend raises.