Respite Care for Vulnerable Adults: Teesside

Alex Cunningham Excerpts

Monday 12th March 2018 Commons Chamber

[Alex Cunningham (Stockton North) (Lab)]

I am grateful for the opportunity to highlight an issue which is specific to Teesside, but which I am sure will have parallels throughout the country. Let me start with a well-worn quotation:

“If you’re one of those families, if you’re just managing, I want to address you directly. I know you’re working around the clock, I know you’re doing your best, and I know that sometimes life can be a struggle.”

Ministers are probably fed up with Opposition MPs quoting those words spoken by the Prime Minister just 20 months ago, on the steps of Downing Street. We keep mentioning them in many different contexts while we see our communities suffer as the promise that followed fails to meet their needs.

Parents of some of the most vulnerable people in our community believe that there is a respite care crisis in Teesside. No one works harder around the clock, doing their best and struggling to cope and care, than the parents and siblings of vulnerable adults, some of whom have the most complex needs imaginable. Those vulnerable adults, with some of the most extreme personal needs, may be in their 30s, 40s or even 50s, which means that the parents caring for them are in their 50s, 60s or 70s. We as a society owe those parents and carers a huge debt of gratitude. They choose to care for their loved ones at home. They do not hand them over to the state because they cannot cope; they get on with the job. They endure the sleepless nights, they clean up after their family members, and they give them the love and dedication that they need. To be honest, they do not ask for much in return for the huge burden they shoulder on behalf of us all, yet we often let them down by failing to provide the support they need, and on Teesside that appears to many to be getting worse instead of better.

I know that this issue is not exclusive to Teesside, but this evening I want to speak on behalf of the parent carers whose loved ones use the residential provision at Bankfields and Aysgarth on Teesside, and all those families who rely on residential respite care to give them a break from caring and have just a little bit of time for themselves.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Gentleman on securing this debate; we have almost an hour and fifteen minutes to speak on the subject, which will be nice. One in 10 people in Northern Ireland are carers, and what the hon. Gentleman is describing is happening in Northern Ireland as well. Does he agree that short-term respite care must be provided to assist in securing the long-term benefit of keeping people in their homes and semi-independent, and that respite care should be offered, and should not have to be begged for?

[Alex Cunningham]

I thank the hon. Gentleman for his intervention, and I agree with him: the longer people are supported to stay at home, the longer they are not an even greater financial burden on the state. I will develop that theme later.

Such is the crisis in health and social care in our country that our NHS commissioners face difficult choices, and families are very worried that they could be facing a substantial cut in the provision offered to them as the local clinical commissioning groups seek to stretch the limited resources they have to meet an increase in demand for support. The CCG for north Tees and Hartlepool and the South Tees CCG are reorganising the way they provide residential respite care. When I met the north Tees chief executive on Friday, she told me of the need to have needs-based services and the plan to review exactly what each individual needs. I know, and so does the Minister, that we must have equity in the system and meet the needs of each individual, and I do not have a problem with that, but, sadly, the review is being interpreted by the families as a cut in provision, with some believing they could lose up to half their respite nights, which they are very anxious about.

I definitely agree that provision should be right to meet the needs of the individual, but this issue is much greater than that: it is also about the needs of the whole family, and perhaps the CCG should have conducted a needs assessment before deciding on the review. In fact, I have always thought that the respite care was very much for the family— an opportunity to take a break from their caring responsibilities, to recharge the batteries and to prepare to resume what they see as their duties.

The CCG has been at pains to stress to me that its proposals do not necessarily mean that there will be a huge reduction in the number of respite nights, but it recognises things will change for some people and is working with families and piloting different ideas to try and improve provision and reassure them. While I think the CCG could have handled this whole business better and understood more comprehensively the issues from the perspective of the families and the various local authority and joint health scrutiny groups who oppose the plans, I cannot say it is its fault.

[Fiona Onasanya (Peterborough) (Lab)]

In my constituency, a home providing respite care for very disabled and unwell children called the Manor is being closed, and I very much agree with my hon. Friend that this issue should be about the whole child, including the family, and the respite having that night provision gives to the family. In my constituency, that night provision is being entirely cancelled; does my hon. Friend agree that the impact of that must be assessed?

[Alex Cunningham]

I certainly do agree. I opened my speech by talking specifically about this being not just a Teesside issue, but an issue across the country, and it is a tremendous challenge to Government to plan for the future; I will also be developing that later in my speech.

I know that the team members at the CCG dealing with respite and wider provision are dedicated to their jobs and that they too have been distressed as we have gone through this process, and I for one appreciate the strains of dealing with such sensitive issues. They are trying to do their best within what they say are the ring-fenced resources available, although I personally could have hoped that they would have kicked the Government for failing to provide the resources needed.

Currently, respite is provided in two NHS centres of excellence, Aysgarth and Bankfields, but what are they planning to do now? The best of the options available to carers is this perceived reduction in residential care provided by the expert and nursing staff for their family members, and then the provision of a menu of alternative choices, largely without nurses. The choices include beds in care homes, hotel rooms, adapted caravans and even in carers’ own homes. Could we really see a vulnerable adult accommodated in a caravan somewhere and looked after by people in whom their parents may struggle to have confidence? What about the risk assessments for that menu of provision? Who is going to check that all the new people caring for these vulnerable people are both trained and suitable for this role and that the premises are suitable? What respite is it for a carer if they have the respite worker under their own roof? That is not much of a break for the carer or the family member.

To be fair to the CCG, it has promised that there will always be appropriately trained staff to offer the care and support required. Sadly, however, it is yet to provide the families with the reassurance they need, and the uncertainty is torture for them. So much more needs to be done to drive understanding. We also have to ask whether changes that cause such disruption are really appropriate in 21st-century Britain when carers do not know what the future holds. Our provision should be improving, not deteriorating in practical terms nor in the eyes of the carers.

[Susan Elan Jones (Clwyd South) (Lab)]

My hon. Friend is making a powerful case. Does he agree that this country needs to be doing a great deal more to support carers? I think back to the 1997 Labour Government, when national insurance contributions towards carers’ pensions were introduced. Is there not a case for looking at things in the round and doing more to support carers?

[Alex Cunningham]

I am a member of the all-party parliamentary group on carers, so I spend a bit of time on this subject. I do not know whether we will ever get to a point at which we are content that we have done enough, but we need to do much more.

I recently wrote to the Hartlepool and Stockton-on-Tees CCG regarding the consultation that was taking place at the time. It confirmed that it is committed to retaining the full £1.5 million fund for this provision, but it highlighted that the money will have to be spread further to reach more families. That confirms that provision is being diluted, and when provision is diluted, it is cut, and it will be the carers who will pick up the extra responsibility.

I accept the CCG’s point that more people need respite services, but the answer is surely to increase funding and provide the services that are needed, not water down what is available and provide a poorer-quality service. Demands for such services will continue to increase over the coming years as more vulnerable, high-needs young people grow into adults, live longer and need the kind of comprehensive support given by the people I have been speaking of today. The cost of meeting the services will therefore go up and, yes, although the cost may in some cases be shared between the NHS and local authorities, neither of them can sustain quality services for a growing cohort of people when the income simply is not there.

According to the National Audit Office, Stockton Council has had its budget cut by 52% since 2010 and spends around 57% of its money on social care. Does the Minister realise that we are facing a potential crisis? Does she understand the tremendous role that carers take on? Does she appreciate the need for comprehensive respite care to give them a few days’ break, or does she think that they will get by and manage? Well, while some may, others will not and will face the difficult decision to hand their loved one over to the health service full time because they simply cannot cope any more. What short, mid and long-term planning are Government doing to ensure that we have a strategy in place not just in Teesside but across the country to cope with increased demand and provide the increased resources required to deliver appropriate provision?

My colleagues on Teesside—my hon. Friends the Members for Stockton South (Dr Williams), for Hartlepool (Mike Hill), for Middlesbrough (Andy McDonald) and for Redcar (Anna Turley)—have all listened to carers’ stories and recognise that they are facing tremendous anxiety over what the changes will mean to respite care. Others have listened, too, including the scrutiny committees of our local authorities. The joint health scrutiny committee, a cross-committee of local councillors, stated that it could not endorse either of the two options or any other that would reduce provision. None of the councillors believe that the CCG has covered itself in glory in its handling of the matter, and they can see why those dependent on these services for a decent quality of life have lost all trust in the organisation, feeling that it has ignored their pleas and failed to understand their needs.

There is another dimension to this. I applaud the CCG for the comprehensive consultation exercise—and it has been comprehensive. Sadly, the CCG has failed to get its messages of reassurance across to these needy families, who interpret that as its having failed to recognise the anxieties created by the process. Carers tell me they have no understanding of any new criteria that will determine who gets what services. They feel that they are being left in the dark. Yes, I praise the public consultation by the CCG, but at the end of day the options were severely limited. I repeat that there is no extra cash to cope with increased demand.

I have heard that at one meeting with councillors, the CCG said that carers cheered when option 2 was chosen over option 1, which would have ended all provision at the two nurse-led residential units. Naturally, the carers cheered the better of two bad options. There was no option at all to extend the current provision or provide resources to cater for the additional needs of new adults coming into the system, which is something that Ministers need to reflect on. The CCG also stated that this was not a cost-cutting exercise. I know that the money is ring-fenced, but with the need to look after more people with the same money, there are fewer resources per person in the system. While I remain critical of the CCG and the way in which it has handled this issue I recognise that in many ways it has been backed into a corner. It know the demands on its service, but does the Minister? It knows that there are more people needing services, but there is no additional funding to provide that.

We all know that we have a health and social care crisis in our country, and while local authorities can shift the burden on to local council tax payers as Government cuts bite deeper, it is not something that our local NHS commissioners can do. They cannot tell local tax payers that they are sticking an extra 3% on their bills to try and alleviate the shortage of funds in areas such as respite care. That leaves the buck well and truly in the Chamber, with the Secretary of State for Health and Social Care and the Minister. My plea to her is simple. Will she take an interest in what is happening on Teesside with respite care for vulnerable adults? Will she examine the proposals, which parents see as a cut to provision for families in the area?

This is much bigger than Teesside. Yes, I know that there are CCGs up and down the country facing the same issues, so perhaps it is time for Ministers to consider the whole policy area of supporting carers such as those I have talked about this evening and find ways of providing the NHS and, for that matter, local authorities with the resources that are needed. Will the Minister instigate a much-needed policy review to see how we can do much better as a country to support carers?

Many families—I have talked to several—are living on the edge, struggling to cope with the needs of their loved ones. They have no intention whatsoever of handing them over to the state, but they need comprehensive respite care services to give them a little of their own time and space. We as a nation owe them no less.

--- Later in debate ---

[The Minister for Care (Caroline Dinenage)]

I am grateful to the hon. Member for Stockton North (Alex Cunningham) for raising his concerns this evening, and indeed to his colleagues, the hon. Members for Stockton South (Dr Williams) and for Redcar (Anna Turley). They have stated the justifiable concerns of their constituents powerfully and articulately. Whenever change is afoot, people have a tendency to feel concerned, and it is absolutely right that those concerns are articulated.

Supporting the most vulnerable in our society—those with complex needs, those with autism and those with learning disabilities—is one of the most important but exacting tasks that health and social care commissioners face. It is a task that must be undertaken with a genuine desire to get the very best outcomes not only for those who need support, but for those who care for them.

It is important to remember that many of the services that we are discussing today are focused on people with autism and learning disabilities—conditions that can manifest with very different requirements. They may need care and help ranging from routine, occasional help in the home to full-time personal support, with perhaps two or more people at a time providing that personal assistance.

Our mandate to NHS England includes a clear objective to improve outcomes for people with autism or learning disabilities. That means making sure that they are fully supported in the community, that hospital admissions are reduced and that they have the opportunity to live an ordinary life. Building the right support is our plan to use concerted local action to deliver that community support and to reduce the number of in-patients by March 2019.

We know that respite services are extremely important and a significant element of community-based support. They benefit not only the individual receiving that care, but their family and carers. Members have spoken very powerfully about that tonight. The hon. Member for Stockton North rightly points out that family carers in particular play an invaluable role—a role that is often unsung and undervalued. Often, they do so not out of a sense of duty or compassion, but out of pure love, and they deserve nothing other than our unbridled respect and our thanks. He asked me about the work that we are doing to support carers. They will of course be an integral part of our thinking in the Government Green Paper on social care that will be produced later in the year. In the interim period, we have a carers’ action plan, which I care passionately about and which will set out some short-term steps that we want to introduce to support carers and their valuable work more fully.

[Alex Cunningham]

It is very clear that the Minister gets this, and I admire the way in which she is putting her argument across, but this is also about resource. I am very concerned about the current problem on Teesside, but in the longer term young people in their 20s are coming through the system and approaching 30. These are children who in a previous generation would never have survived, and they are going to need more and more services. More children are becoming adults who will require more provision. What are the Government doing in terms of longer-term planning?

[Caroline Dinenage]

The hon. Gentleman articulates a real issue with which we have to contend. That is why we have increased NHS spending every single year since 2010, so that our NHS now has about £13 billion more to spend on caring for people than it had in 2010. That goes to the heart of the issue that he has identified. We need to ensure that care, particularly respite care, is responsive to the needs of individuals. That implies both a need to assess and determine the right kind of support, and a need for flexibility to allow for personal choice, as I believe is being looked at in Teesside.

Some needs may be best met through a stay in a suitable service that provides overnight beds, with appropriately trained staff to support people’s individual care needs, but that may not be true for everybody. Those with less severe physical or learning disabilities may find that action in the community is more desirable and appropriate for them—for example a visit, leisure activity or even visiting family members with the right personal support. We do not want those opportunities to be written off for them because we have a very restrictive system, which is why it is right that commissioners have the means to seek new approaches and to be flexible in how they meet people’s needs. I understand that the intention in North Tees is exactly that, but it must be based on suitable engagement, as the hon. Gentleman said, to assess people’s individual needs.

Having listened to hon. Members’ comments, I understand their concern that not everyone can currently access respite services and that these services may not be flexible enough. Local commissioners are rightly looking to change respite provision. The hon. Gentleman will understand that it is not customary for a Minister to comment in detail on specific commissioning decisions or on the extent to which there was appropriate consultation, unless that is part of a formal review process. I understand that the local CCG has consulted on the proposals for 10 weeks and is now in the process of designing the service.

[Alex Cunningham]

Does the Minister recognise that the CCG has acknowledged that it will have to get more people into the system, so the service will be diluted? Having recognised that, what can she do about it?

[Caroline Dinenage]

As I have already said, it is up to CCGs to commission the local services that they feel are appropriate in their local communities. It is not for the Government to force a top-down diktat on how they need to spend their resources. I understand that local councils are, quite rightly, scrutinising the proposals right now. This is an important means of quality assurance and is informed by local people with local knowledge. I hope that the hon. Gentleman will find some reassurance in that. However, although it is right that service reconfigurations are considered locally and are not driven from the top down, any significant changes to services are subject to the Government’s four tests. The changes should demonstrate support from clinical commissioners, strengthened public and patient engagement, clarity on the clinical evidence base, and support for patient choice.

There is a clear set of expectations in relation to the provision of respite care and the role of commissioners. Alongside provisions in the National Health Service Act 2006, all CCGs must secure services to meet the needs of their population to a reasonable extent. Respite care may be routinely commissioned or made available as part of a package of NHS continuing healthcare, and is often also provided as part of social care. The Care Act 2014 requires that where an adult or carer appears to have care and support needs, the local authority must carry out an assessment and meet any need where the person has met the eligibility criteria.

[Alex Cunningham]

The scrutiny groups on Teesside—at least some of them—are thinking of referring the matter to the Secretary of State. What happens when it is referred, and what can the Government do then?