Hospices (Children and Young People)

Jason McCartney Excerpts

Wednesday 18th December 2013 Westminster Hall

[Annette Brooke (Mid Dorset and North Poole) (LD)]

It is a pleasure to serve under your chairmanship, Mrs Osborne. I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on securing the debate. I certainly like the description of him as the smiling MP. He has much experience to bring to this whole debate.

I should declare that I am a long-standing supporter and patron of Julia’s House, a children’s hospice in my constituency. I am pleased we have this opportunity to recognise the plight of families with a seriously ill child, as well as the role of children’s hospices and other palliative care providers in supporting them. I endorse many of the comments that have been made.

I would like to use this opportunity to highlight a vital type of support that is lacking in many parts of the country for these children and their families, but which Julia’s House has helped to pioneer. Most children’s palliative care focuses on end-of-life care, emergency care and some respite, but Julia’s House, in response to parental demand, mainly provides all-year-round, frequent respite care at homes throughout Dorset and south Wiltshire, as well as in the hospice in Poole, in Dorset.

For families with a child with a life-limiting or life-threatening illness, sleep deprivation, exhaustion and anxiety about the child’s health can take a heavy toll on family relationships. Parental break-up rates in families with a long-term seriously ill child vary, but they are known to be higher than the national average. People commonly report isolation, lack of time as a couple or as a family, and physical and mental exhaustion among their worries. Knowing that a specialist service will take the pressure off them for a few hours at a time of their choosing each week can be the difference between coping and not coping. It is even better if the service comes to their own home, as many families cannot easily transport their fragile child.

In the more than 10 years since Julia’s House began to provide this care, evidence has emerged that many parents see frequent respite as a factor in helping them to stay together as they try to cope with their child’s complex round-the-clock care needs. The impact of the frequent respite service and the flexibility afforded by offering much of it in families’ own homes earned Julia’s House the accolade of health care charity of the year at the 2012 national charity awards.

Julia’s House and Bournemouth university are now researching the extent to which frequent respite care helps couples with a seriously ill child to stay together. Their three-year study will conclude in autumn 2015, with interim results available in autumn 2014. Reliable data from the research could point the way towards a change in policy. It is in nobody’s interests, including the welfare state’s, for the parents of seriously ill children to separate. If frequent respite can play a preventive role, and if successful models of support are emerging, health and wellbeing boards should be asked to make frequent respite for families a strategic priority. As well as involving Julia’s House the research project will widen early next year to include client families from a selection of children’s palliative respite providers in England.

When the research started, the Julia’s House chief executive Martin Edwards met officials at the Department for Work and Pensions and the family policy unit to explain the research aims. The officials were naturally interested in tracking the results. I hope that the Department of Health and the Department for Communities and Local Government will take a similarly close interest, along with policy makers in all the main political parties. We all like to talk about reducing family break-up, but we struggle to find levers for that, and the project could provide one. Julia’s House will share the research results with the children’s palliative care sector and representatives of the three main political parties.

Emergency and end-of-life care, whether provided by the state or the voluntary sector, is very important, but it may come after a process of several years. Many children diagnosed with a life-limiting or life-threatening condition will live into their teenage years or beyond, and it is important to make that time as happy as possible. The cumulative effect on parents of sleep deprivation, exhaustion, isolation and anxiety is enormous. Which of us can say that we could survive such pressure?

[Jason McCartney (Colne Valley) (Con)]

I want to praise my hon. Friend the Member for Pudsey (Stuart Andrew) for initiating this emotional and important debate. I hope that he will keep smiling; I know that his constituents smile a lot because of the hard work he does in his constituency.

The hon. Lady makes a great point about respite care. The Forget Me Not children’s hospice in Huddersfield opened its doors formally this year, but for a couple of years its nursing teams have been going into the community, helping 50 families. I volunteered with them last summer and remember vividly a single mum with a very ill child, whom they would help two mornings a week. She has not had more than two hours of unbroken sleep in the past six years, and those two mornings a week are the only times when she gets a little time to herself, whether to have her hair done or meet a friend. The contribution of those teams to her life make her a better mum, and help her to care for her child better. It is an excellent point.

[Annette Brooke]

That was an excellent intervention. How could any of us maintain a good family life under such unrelenting stress? What a difference that respite makes.

A family in my constituency likened the pressure to slowly drowning, in exhaustion. In their words, “The only name on the life raft reads ‘Julia’s House’.” For families elsewhere in the country, in the numerous places where there is no genuinely year-round respite, there is no life raft. I commend the initiative to the Minister and look forward to her response. The research is likely to show the great benefits to commissioners of spending more money on respite care.