Carers

Debate between Paul Burstow and Steve McCabe

Thursday 20th June 2013 Commons Chamber

[Paul Burstow]

The hon. Lady is absolutely right to say public sector employers should be—and could be, and must be—exemplars in this. Indeed, it would be great if the NHS itself was an exemplar in this area, yet as I will come on to say, I think in too many ways institutionally the NHS is rather biased against carers, and certainly blind to their needs in too many cases.

There is an economic reason why we need to do more in this area. It is estimated that as many as 50% of those involved in personal and household services operate in the grey economy. This represents a further missed opportunity in terms of job creation and lost revenue to the Exchequer. Looking across the channel to France where work began almost a decade ago to address a number of these issues, market development for homecare services has led to the creation of an additional 2 million jobs, with the industry becoming one of the biggest growth sectors in that economy.

There are clearly lessons to be learnt in how to support and strengthen carers’ ability to care in a way that supports the wider UK economy. I hope the Minister will be able to tell us when the “task and finish group” recommendations will be published.

Moving on, one of the most practical ways to support carers is to provide them with breaks from caring. That can help reduce the stress and the often constant demands that caring involves, and allow them to have the time to improve their own physical and mental health.

In recognition of the value of carers breaks, the Government committed in the 2010 spending review to spend £400 million over four years on breaks for carers living in England. As the Minister at the time, I was convinced of the importance of giving carers a break and knew that it would make a huge difference to their lives. I therefore regret that the evidence suggests that that has not happened. Monitoring by the Carers Trust for the year 2011-12 found that action on the ground had often been slow or non-existent. Despite clear reporting requirements, in many areas it was impossible to track how money had been spent, and in a small minority of cases nothing at all had been spent on services for carers. Some fantastic work has been done, but progress has remained appallingly slow. To be fair, this problem has dogged not just the coalition Government, but successive Governments.

I ask this question: what is the common factor? The common factor is the institution we are using to direct the money, which is the NHS. It does not see carers as significantly important contributors to it, and therefore it does not see this money as worth spending on them. That has to change.

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

I acknowledge the right hon. Gentleman’s efforts when in government, and I agree that this issue has dogged successive Governments. I wonder whether we have reached the stage where we have to give some clear statutory rights to carers in respect of respite care, because whatever organisation has the budget, it does not seem able to recognise that this is an essential need if a person is going to continue to be a carer. Would the right hon. Gentleman entertain that approach?

[Paul Burstow]

To be honest, in this area the NHS is probably drinking in the last-chance saloon. If we do not see progress, legislation may be necessary. There is another way in which the money could, and should in future, be earmarked for this purpose. There have been transfers from the NHS to local authorities for the support of social care more generally, and in some local authority areas that has happened with the carers break money as well; it has been transferred. It has not happened everywhere, however, and I think it should now become mandatory, so this money gets spent for the purpose the Government said in their spending review it was for. That is a perfectly reasonable thing to expect, and the Government need to reflect on three years of this money not getting where it needed to be, after a number of years of that under the last Government as well.

A survey by Carers UK found that in one in five cases where a person who was receiving care from family or friends was admitted to hospital as an emergency, that could have been prevented if the carer had received more respite care and support. This makes big differences financially to the NHS. It uses resources better, and that is why it beggars belief that the NHS has not yet made sufficient progress, with its partners in local government, to improve access to breaks for carers.

Under the health service reforms, with clinical commissioning groups taking the lead, there have been some examples of improvement, such as in Huntingdon, where there is an interesting carers breaks project led by GPs. Partnered with Crossroads Care, they identify carers by meeting them socially, and prescribe breaks. Carers who are met in that way tell me they have for the first time had the experience of having raised their needs as carers and seen that translated into tangible action that made a difference for them. We need to see more of that. It is a vital lifeline.

As has already been said, there are huge issues to do with identification of carers. Research by Macmillan has found that while over 70% of carers came into contact with GPs, doctors and nursing staff, only 11% of all carers reported that they had been identified as a carer by a health professional. We as a Government talk about making every contact count, and we should do so when it comes to identifying carers. I hope the Minister can look afresh at what we can do to challenge NHS England to fulfil its obligations. I hope the National Audit Office will take a look at how successive Governments have attempted to engage the NHS with the carers agenda.

I want to finish by talking briefly about the Care Bill. It is no small thing that this is the first ever Government Bill to provide for carers’ rights. Until now, the cause of carers has been advanced by private Members’ Bills. Let me place on the record my appreciation for the work of the late Malcolm Wicks, whose Carers (Recognition and Services) Act 1995 was a landmark in the rights of carers and a fitting legacy for such a thoughtful and generous Member of this House. For the first time, the Care Bill enshrines in legislation carers’ rights to an assessment of their needs and, importantly, establishes a duty to meet those needs which are eligible. It also establishes clearly the need to consult and involve carers in decisions about the care of those they care for.

Although the Care Bill is hugely welcome, inevitably there are gaps and unintended consequences that must be addressed if all carers are to get the support they are entitled to. Following the Government’s welcome announcement last week of their intention to amend the Children and Families Bill to ensure that the rights of young carers are as strong as those proposed for adult carers, we must see the necessary changes to it and the Care Bill, and ensure that the rights of parent carers of disabled children, which have so far been neglected in both Bills, are not allowed to fall through the cracks.

I look forward to colleagues’ contributions and hearing them draw on their experience of engaging with carers in their constituencies. I know from talking and listening to carers, and from tweeting about carers’ issues, the genuine and palpable outrage they feel because all too often they are overlooked and under-supported. We need to change that. The Government are making good progress, but more still needs to be done.

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[Steve McCabe (Birmingham, Selly Oak) (Lab)]

I congratulate the Members who helped to secure today’s debate.

During the debate on the Queen’s Speech, I referred to the experiences of two carers in my constituency. One was Lynne Hanslow, who cares for her 96-year-old father, keeping him out of residential care. All that she asks for is a fortnight’s respite break each year, but this year, despite having given the council four months’ notice, she was denied that break and was abused by a local authority employee when she complained about her treatment. Not surprisingly, Ms Hanslow ended up having to go to her GP. A carer had been made ill by neglect and worry.

I have spoken to the council’s director of adult services, but so far Ms Hanslow has not received the full apology that she deserves, along with a promise that that will not happen again. I believe that the council’s chief executive should make the apology, thus sending the signal that he means to take the needs of carers seriously and will not stand for his staff treating them with contempt. Ms Hanslow’s experience is one of the reasons for my conclusion that statutory respite care should become a legal, enforceable right for carers. We have tried the other approaches for too long.

I also mentioned the case of Margaret McGarry. She cares for her frail elderly mother, who suffers from dementia. Her direct payments have been suspended, apparently in retaliation for her having had the temerity to go to a solicitor because she felt that the local authority was being unreasonable in terms of the flawed level of support that it was prepared to provide. There should be a much simpler independent review process for carers like Margaret McGarry who are treated in such an appalling way. The current system seems almost to be weighted in favour of officials and bureaucrats, at the expense of carers. I wonder whether the time has come for local authorities to create carers champions to look out for carers’ interests. I have come to the conclusion that local authority complaints procedures in much of the NHS these days are not about problem solving at all. They are about process. They are almost a game to create an illusion of accountability. I think we need a champion who will listen to carers’ concerns.

[Paul Burstow]

I think it is worse than that. The balance of power is entirely wrong. It is too much on the side of the local authority to which the individual is complaining. That is why we need advocacy, but it is also why we need to look at the case made in the Joint Committee report on the draft Care and Support Bill for the need for a tribunal service, to start to address these matters in a more impartial way, detached from the local authority. How can a local authority investigate itself?

[Steve McCabe]

I certainly agree with that, although I would be reluctant for us to have a complex system that the carer has more difficulty accessing. I take on board the right hon. Gentleman’s point, however.

In arguing for a champion, I am looking for someone like a councillor, with sufficient clout to intervene and right wrongs and cut through the madness and bureaucracy that all too often ends up punishing, rather than protecting, the carer. That does not mean we should not also have further review and appeal processes, but I want us to have something simple that people can make use of and that will make a difference.

A champion might also do more to make sure the voices of ordinary carers are heard. I am thinking about the hidden carers that so many Members have mentioned—the people who are too busy caring to have time to attend the consultation sessions, which are organised to suit the convenience and working hours of the NHS and local authority officials, so these people are never heard.

[Steve McCabe]

I welcome what the Minister says. I am able to identify these people in my constituency, and I do not understand why it is so hard for the caring organisations to identify them.

I wonder why we do not say that at the point when an individual qualifies for attendance allowance the local authority should be notified and instructed to commence consultations with the person and their carer, with a view to establishing a long-term care plan and review strategy. That could reduce the occurrence of crisis care episodes, and the authority could simultaneously start to develop a support plan for the carer, so the needs of the carer are at the centre of the care plan.

[Paul Burstow]

The hon. Gentleman’s point about attendance allowance is interesting and important. He may know that this week the Strategic Society Centre think-tank published an interesting report setting out how this area might be reformed in a way that provides just what he has described: a front door into the social care system. Does he share my surprise that we have a system that does not talk to social care at least in part because it is entirely paper-based? It is not electronic, and perhaps the Department for Work and Pensions needs to consider putting it on that basis, so the information can be shared more freely.

[Steve McCabe]

I think I probably would agree with that, although the right hon. Gentleman must recognise that the Government are moving increasingly towards systems that do not allow for face-to-face exchange. I understand that that is one of the major disputes about what is happening in the DWP. I think it would make classic sense, however. All of us hear enough about joined-up government, and this is one area where a bit of joined-up government could save money and provide a much better service.

Epilepsy

Debate between Paul Burstow and Steve McCabe

Tuesday 29th November 2011 Westminster Hall

[Paul Burstow]

The hon. Lady needs to be patient, because I still have quite a lot of sheets of paper and quite a lot of answers to give. Before I took her intervention, I had answered a specific question on prisoner health from the hon. Member for Birmingham, Selly Oak. I am trying my best to cover the ground.

I will deal with the national clinical director proposition. As part of the transition—the hon. Lady alluded to this—from a command-and-control system in which the NHS is directed from the Department of Health to a model in which the service is at arm’s length and directed through goals and objectives set to a mandate, the NHS commissioning board will be where national clinical directors sit. The national commissioning board will make the decisions on the precise configuration of those appointments. Clearly, that will be modelled on the approach taken on an outcomes framework, so that there is proper coverage of all its domains. That is as much as I can say today, and perhaps we need to have a further debate, but if she wants more information, I will happily write to her with more detail. I cannot say today, however, that there will be a DH-appointed epilepsy national clinical director, because that is the old world and we are moving to a new world, whether we agree about that or not, and in that new world the responsibility for making choices about the appointment of national clinical directors will sit with the NHS commissioning board. That is as clear an answer as I can give to her question. I will answer the others as we move on.

Assessment of need was mentioned in the debate and goes to the heart of a challenge for the charities. My experience over the past 12 months of talking to many non-governmental organisations that advocate on behalf of patient groups is that some see huge opportunities in reorganising themselves to get much closer to the new commissioners and to those who will shape priorities for local services at a local level, and they are looking to organise themselves accordingly. Others are finding it more difficult to think through how to organise themselves to do that, and are therefore looking to how they can use the old levers, encouraging the Department of Health to proceed through central fiat and direction. My job is to say that that is not how it will work and, if they expect that that is how things will happen, they will be sadly disappointed. The Department and I as a Minister are only too pleased to work with organisations to ensure that they can realise and exploit the full potential of the new arrangements such as the health and wellbeing boards, the clinical commissioning groups and their duty to engage with their public, their patients and carers. Organisations, including some of the epilepsy charities, need to think that through carefully.

Health and wellbeing boards will be the local system leaders and will drive joined-up health and social care services. They have a key role, with joint strategic needs assessment and joint health and well-being strategies, in which they understand the population need and future population need, and that in turn drives commissioning for populations and outcomes. Simply said, to ensure that those joint strategic needs assessments are rich and informed, charities in the sector have a part to play in the conversation, to ensure that their input is not lost. NICE clinical guidance and quality standards play their part as well.

The hon. Member for Birmingham, Selly Oak asked about research. Who could disagree—I certainly do not—that the case for more research is strong? Again, however, directing more research through ministerial instruction is not how we should proceed. That might get more research but it does not guarantee quality, which is why we have for a long time had the Medical Research Council leading, with independent peer review as the process for allocating research resources. As in many other spheres, the key is to ensure the crucial infrastructure to support quality bids in the first place—the better the quality, the better the chances of an increase in the resources. We saw that with dementia; the Government had a priority to invest more but did not achieve that simply by putting up a quantum and stating that “This is what we must now spend.” Simply, it is about putting in place the steps to ensure quality research bids in the first place.

The information revolution is another important part of delivering the agenda. Today’s challenge in providing high-quality care services cannot be met without effective use of information. At present, many people who use our health and care services do not get the information that they need and expect as part of the care process, which we have heard described graphically. We sometimes fail to meet the information needs of our clinicians and care professionals, so information is critical to our ambition to put people in the driving seat of their services and their care. Through the work of the NHS Future Forum so far, we are examining how to ensure that the information strategy that will be published fully reflects the various concerns expressed.

The hon. Member for Hackney North and Stoke Newington asked a specific question about whether the information provided in Scotland and Wales is available. The answer is yes. There are comprehensive information sources available on NHS Choices, including a guide to epilepsy that contains information about SUDEP and minimising risk. The use of things such as NHS information prescriptions and, as we develop more of them, tools to help patients and clinicians make decisions are ways of further strengthening that important notion of “no decision about me without me”.

The hon. Member for Newport West (Paul Flynn) talked about his constituents Gwyn and Gill Thomas, the tragic death of their daughter from SUDEP and how they felt bewildered and, I suspect, outraged that they did not get information on which they could have acted at the time. That has spurred them on, and we can probably find echoes of that in every constituency surgery throughout the country—people motivated by personal experience to ensure that it happens to no one else. The hon. Gentleman’s example of the case of Christina and the lack of knowledge of risk underscored the as-ever exceptional contribution of my hon. Friend the Member for Blackpool North and Cleveleys to today’s debate. By talking about his own experience, he illuminates a much wider and more important picture about the frailty of human beings and their reluctance sometimes, even when professionally trained, to engage in the conversation that they are paid to have, which ultimately is a conversation about life or death. We know that NICE has set out clear guidance on care planning and case management, which provides good evidence of how they can make a difference.

The guidance also talks about the role of epilepsy nurses, and the hon. Member for Hackney North and Stoke Newington asked how the Department helps with their availability. One of the ways we help is by ensuring that good tools are available for local business cases to be put to commissioners locally. We do not mandate from the centre a certain number of such members of staff, but we make it clear through the regulatory framework and other ways that the skill and staff mix of organisations has to be appropriate to the services that they are providing. There is as well a strong economic case for epilepsy nurses to be commissioned, because of how they can have that honest conversation with the individual concerned.

Another way we can play our part at national level in raising the profile of these issues and making commissioners think through how they commission services effectively is through the development of outcome strategies. We have outcome strategies for respiratory and mental health conditions, and I recently announced the Government’s intention to develop a cross-Government outcome strategy for long-term conditions. The purpose of the strategy is to take a life-course approach. It will draw on the Government’s approach in developing our mental health strategy. Shaping it will involve a wide range of stakeholders beyond the Government.

The hon. Lady rightly rehearsed the Prime Minister’s enduring interest in these issues, which spans the whole health sphere. That is why he continues to pursue and to follow closely the key work of Health Ministers in taking forward the legislation to reform the NHS. I will inquire about the correspondence and find out what has happened about that.

Reference was made to the Joint Epilepsy Council and its activities. I applaud its work, but I must make it clear that the future of our public services is in a local rather than a national context. For the NHS, it is not about running commissioning services for specific conditions from the Department of Health; it is about local clinical commissioning groups working locally with patient groups and others better to understand local needs and to ensure that they structure services with those in mind.

[Steve McCabe]

I accept the case that the Minister is trying to make for the new commissioning arrangements, but, like many of us, charities and help groups that work with epilepsy are not entirely clear about how the new arrangements will work. Does he have any plans to meet the epilepsy groups so that he can better explain his ambitions and how those groups will be able to play a central role in the new world that he envisages?

[Paul Burstow]

It was kind of the hon. Gentleman to intervene, because it allows me to answer his final question. The Department continues to work with the charities and to discuss their concerns, and I am happy to arrange a meeting to have such discussions.

Health and Social Care (Re-committed) Bill

Debate between Paul Burstow and Steve McCabe

Wednesday 7th September 2011 Commons Chamber

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

A number of us are trying to understand what will trigger some kind of higher-level arbitration if it becomes abundantly clear to a significant group of people in a local community that the health and wellbeing board’s view is not being properly considered by the CCG. At that point, when there is a clear conflict, how will that conflict be exposed so that the Secretary of State or someone else clearly arbitrates so that there is fairness, not lip service? A lot of people are anxious about that.

[Paul Burstow]

That anxiety was expressed in Committee by some Opposition Members. As a result of the NHS Future Forum’s recommendations, we have put in place further checks to ensure that those concerns are allayed. Not least of those—as well as our view that the health and wellbeing boards should have on them a majority of elected councillors—is that they will have clear rights of membership from the local healthwatch, which will be listening to the wider community and will represent those wider concerns. They will have the views and expertise of the director of public health, the director of adult social services and the director of children’s services. If they feel that the strategy that they have all agreed is not being honoured in the commissioning strategy, they can ultimately refer that matter to the NHS commissioning board, and that can lead to changes being made.

--- Later in debate ---

[Steve McCabe]

Will the Minister give way?

[Paul Burstow]

I am conscious of the time, and the fact that other hon. Members want to move and speak to other amendments. If the hon. Gentleman will forgive me, I will make a bit more progress.

Oral Answers to Questions

Debate between Paul Burstow and Steve McCabe

Tuesday 8th March 2011 Commons Chamber

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

T7. Every 23 minutes, someone in the UK is diagnosed with a blood cancer disorder—that is 23,600 people per year, including many children. Survival often depends on a donor match. Today until 6 pm, the Anthony Nolan trust has a stand in Portcullis House, where people can get more information, and where those under 40 can register. Will the Minister join me in promoting the donor register and in encouraging MPs and staff to visit the stand?

[Paul Burstow]

I think that more than one of us wanted to do just that, because the Anthony Nolan trust does a fantastic job. The hon. Gentleman is right to raise awareness of it, and all hon. Members should take the opportunity to visit its stand today.