Respite Care for Vulnerable Adults: Teesside

Jim Shannon 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.

--- Later in debate ---

[Dr Paul Williams (Stockton South) (Lab)]

I congratulate my hon. Friend the Member for Stockton North (Alex Cunningham) on securing the debate. I also congratulate him on his leadership in this area and on his engagement with the families and the clinical commissioning groups.

The challenge of being a carer for an adult with complex needs is a lifelong challenge. I have enormous respect and admiration for the people who do this work. My grandmother’s sister—I have just worked out that she is my great-aunt—has spent her life looking after several different adults with complex needs. She adopted them as children and has cared for them. I have seen the enormous amount of love and compassion that she has given them, and I have seen in all my constituents who have contacted me, and in my work as a GP in my constituency, the love and compassion that go into looking after adults with complex needs. But this comes at a cost for carers, mainly to their health. They often prioritise the needs of the person they are caring for and do not think about preventing their own ill health problems or about properly looking after problems as they arise. There is also a time cost. Being a carer for an adult with complex needs is a massive time commitment, a money cost and a career cost. So there is huge cost.

[Jim Shannon]

It is also important to get the issue of young carers recorded in Hansard. I have a vibrant young carers association in my constituency, in Regent Street, Newtownards. The work they do with elderly family members is the reason those families are together, so the issue of young carers is so important. Does the hon. Gentleman encounter the same issues I have in my area when it comes to young carers? Does he agree on the importance of keeping families together and of what young carers do?

[Dr Williams]

I thank the hon. Gentleman for highlighting the needs of young carers. In my constituency, as in those of all Members in this House, there are young people who grow up suddenly when they find themselves needing to be carers and who really do hold families together.

In the context of how difficult this caring can be and the tremendous efforts that people make in order to keep their loved ones well and look after them, the provision of occasional respite is the least we should be doing as a society. It is the least we should be doing to say thank you and to sustain the incredible efforts that these people are making. Like my hon. Friend the Member for Stockton North, I give some credit to the two CCGs involved, Hartlepool and Stockton-on-Tees CCG, and South Tees CCG, for taking some responsibility for this. We all see the constant jostling between local authorities and commissioners of health services about who should fund these issues in a time of austerity, but our CCGs have stepped up to the plate and taken ongoing responsibility for funding these issues.

However, a number of constituents have contacted me in what I can only describe as a state of panic during these consultations and since the outcome of the consultations was announced. They are fearful that their much-needed breaks are going to be taken away from them. As my hon. Friend pointed out, their fears may well prove to be ill-founded, but this should not mean that they should be discounted. Change is always difficult for people, but the possibility of services being cut has caused genuine anxiety for these people and we should rightly be recognising it. We all know that caring can be physically demanding, but it can also be mentally demanding, especially if it is being done for long periods of time. Adequate respite is essential if these carers are to be able to maintain their own health and wellbeing. It is also essential that carers are closely involved in any decisions about what is adequate and appropriate for their family members and for themselves. As he has said, a respite package should be designed around the needs of the whole family, not just those of the individual with complex needs.

What we are seeing, though, is limited funding. I do not know whether this is ring-fenced funding that the CCG has or whether it is taken from an overall pot, but there is limited funding. CCGs have a number of conflicting priorities. We know that throughout the health service demand is increasing and outstripping any increase in resource that it has. The limited funding and the rising need for this particular kind of care mean that for some people packages of care are likely to be reduced. That is causing people significant anxiety.

Before I finish, let me say that our experience on Teesside illustrates that health and social care do not exist in isolation from each other. Some small steps have been taken, including by changing the Department of Health’s name to the Department of Health and Social Care, but respite care is a really good example of where some more concrete steps can be taken to bring together health and social care funding. There should be a partnership between local authorities, clinical commissioning groups, parents, carers and the people with complex needs, so that they can work together. Respite care is an issue on which we should be seeing integration at its best. If we are talking about integration, I have to take the opportunity to talk about the forthcoming Green Paper on social care. It is inconceivable for me that in 2018 we should be considering social care in isolation. Will the Department think about whether the Green Paper should really be on health and social care together, rather than just on social care?

I pay tribute again to the carers who have come together to fight for the very best services for their loved ones. They deserve for us to listen, to consider and to act, so that they get the respite services that they need for themselves and their families.

--- Later in debate ---

[Caroline Dinenage]

That will of course be a matter for the Secretary of State, who will deal with it in the appropriate way.

The Care Act also requires local authorities to take a preventive approach to addressing people’s needs in taking steps to intervene early to prevent or delay any worsening of an adult’s need for care and support. This would of course include the carers about whom the hon. Gentleman and his colleagues care so passionately. It is really important to allow carers to take the respite that we have spoken about.

The hon. Gentleman might be interested to know that the Autism Act 2009 requires the Government to have a regularly reviewed autism strategy and to issue guidance to local authorities, NHS bodies, and foundation trusts. In addition, the Children and Families Act 2014 introduced a new statutory framework for children with special educational needs and disabilities. This gives commissioners very clear responsibilities towards those with learning disabilities and autism, including those who may be affected by the review on Teesside.

[Jim Shannon]

I think that everyone in this Chamber will have a knowledge of autism. The Minister will be aware that we have an excellent autism strategy in Northern Ireland, and there is also a very good strategy in Wales. Has she had a chance to check out both those strategies in order perhaps to introduce them, in full, to England?