Support for Life-shortening Conditions

Debate between Stuart Andrew and Robin Walker

Tuesday 7th June 2016 Westminster Hall

[Stuart Andrew]

I absolutely agree. During the time I spent in the hospice movement, I learnt that those final few weeks are incredibly distressing. None of us can possibly imagine what it is like unless we have been through it. The support for the parents and the wider family is what makes much of what happens in the children’s hospice movement such a success.

The care must be age appropriate—suitable for a child’s particular stage of development—and administered by people who have the exact skills needed to get the person through their care pathway. A comprehensive local children’s palliative care service spans health, social care and education. Joint commissioning is vital and should be accessible 24/7, 365 days a year, from diagnosis to bereavement. As a result of the complexity and severity of patients’ needs, the transition from children or youth services to adult services can be particularly daunting.

[Mr Robin Walker (Worcester) (Con)]

I am grateful to my hon. Friend for securing the debate and for the well-informed points he makes. Is it not the case that improvements in medical technology mean that more children with life-limiting conditions are transitioning into adulthood? Therefore, we have a real duty of care to ensure—as Acorns Children’s Hospice in my constituency is doing—that we find the best pathways to support those people into adulthood and to give them the best chance of living a quality life with the time that they have.

[Stuart Andrew]

My hon. Friend is right. I saw great advances throughout my time in the hospice movement. When I first joined Hope House, the life expectancy of the children who suffered from Duchenne muscular dystrophy was usually no longer than 18 or 19. By the time I had finished my career in the hospice movement, some were living into their late 20s and possible even their early 30s. Transition is incredibly important for them, because often the style of care provided is geared more towards the older generation than to young people.

Transition is incredibly important and centres such as Martin House, which I worked for, understand that. It built Whitby Lodge, a dedicated unit for teenagers and young people, which has state-of-the-art equipment designed to enable social interaction through things such as a mini nightclub—something that we all take for granted. As well as caring for children and young people in the hospices, members of the care team supported the family in their home. Even after a child has died, help is provided in the form of bereavement care for family members.

Transitioning to other services can sometimes present real difficulties. From dealing with new agencies and professionals, to transitioning to a completely different plan, the result can create quite severe gaps in service provision. The impact is, frankly, quite shocking, with 36% of families breaking down, 64% of mothers and 24% of fathers having to give up work entirely, and nearly 70% of siblings being bullied or feeling isolated at school.

All that can create a cocktail of problems that leads families into poverty. Therefore, at all times, it is vital that locally available, community-led children’s palliative care is at the heart of the service provision. These kinds of services are, thankfully, easier to find than they once were due to local offers and organisations such as Together for Short Lives, which provide directories of available services. That is just one example of how provision has changed since I began working in the hospice movement.

I will never forget seeing families, drained and exhausted, arriving straight from work or school on a Friday, the colour drained from their faces with no fight in them, dragging bulky equipment around in their car, when all they wanted to do was what we all like to do—go out for a simple meal on a Friday night. Great palliative care allows those families to have short respite breaks, the importance of which really cannot be overstated, because it provides support to everyone in the family. With the number of children and young people with life-shortening conditions increasing, it is becoming harder for the Government, the NHS and local councils to budget enough to meet those families’ needs, given that the number of people with such conditions is not being monitored, as the hon. Member for Torfaen (Nick Thomas-Symonds) mentioned. The complex care that such families need from multiple agencies and professionals is not joined up enough, and families have to fight with their last ounce of strength to get the services they need. I therefore ask my right hon. Friend the Minister what can be done to ensure that the number and needs of children and young people with life-shortening conditions are more accurately monitored.

Funding for voluntary sector providers of children’s palliative care is not being provided fairly or sustainably. It is limited to medical elements of care and does not include crucial non-clinical elements such as short breaks and bereavement support. Together for Short Lives expects to publish soon the results of a series of freedom of information requests it has made to clinical commissioning groups and local authorities. Those results will show the extent to which different elements of care are being commissioned, and I hope that colleagues from across the country will use those data to see how their own constituents’ care is performing.

Before that, I ask the Minister whether he can set long-term plans for funding children’s palliative care fairly, sustainably and in a way that reflects the growing demand for such services. Additionally, will he work with his colleagues to write to CCGs and local authorities to make it clear what their responsibilities are in commissioning palliative care? Local authorities have a duty to provide short breaks for disabled children. However, they are cutting funding for short breaks at a time when demand from seriously ill children is increasing. The Government and local authorities, of course, face a difficult situation in balancing budgets, and I fully understand the need for that to happen, but at the spending review the Government gave councils the ability to raise more money for adult social care through council tax. Children’s social care was left out and I struggle to understand why, so I would appreciate it if he expanded on that. Additionally, will he hold local authorities to greater account for the money they spend on short breaks for disabled children and ask them what action they are taking to secure access to such breaks?

As I have mentioned, without access to specialist adapted vehicles, which many families need and many of which I saw, families are unable to transport their seriously ill babies and young children to and from hospital. That often traps those babies and young children at home or in a hospital bed, preventing them from enjoying the things that we all take for granted. Children under three with life-shortening conditions are not currently eligible for the mobility component of disability living allowance, so will the Minister work with his colleagues in the Department for Work and Pensions to change the eligibility criteria so that nought to three-year-old children with life-shortening conditions, whose lives will end without heavy and bulky medical equipment, can have access to such important vehicles?

Hospices (Children and Young People)

Debate between Stuart Andrew and Robin Walker

Wednesday 18th December 2013 Westminster Hall

[Stuart Andrew]

That is absolutely right. A lot of lessons can be learned from the hospice movement on providing care, because what matters at the end of the day is the children and the families—they should be able to access services as easily as possible.

I was talking about the youngsters living longer, but the hospice environment was generally geared towards young children. It started to become less appropriate or even desirable for young adults to go into the same building. The trustees at Martin House took the brave decision to build a new, separate teenage unit in the grounds. Through generous public donations, Whitby Lodge opened its doors in 2002, the first hospice of its kind in the United Kingdom. It has been a huge success, and is being replicated around the country, because young adults get to behave just like that: as young adults. The conversation is more appropriate to their age, and they can share and talk openly about their own needs, fears and hopes. As a result, the care team can learn more about the young people and help them where they can with their particular ambitions. While I was based at Martin House, a number of young people went to university, encouraged by the care team. The team also tried to help those young people when they were going through the transition from child care to adult social care.

[Mr Robin Walker (Worcester) (Con)]

I congratulate my hon. Friend on the important and passionate case that he is making for children’s hospices. As he has pointed out, people are now living much longer with complex conditions, so transition is a key area. Does he welcome the work that Acorns children’s hospice is doing with the Help the Hospices movement to design better pathways for transition?

[Stuart Andrew]

Absolutely. I will talk in a little more detail about transition later. The Care Bill had its Second Reading on Monday, and I raised specific points about transition during that debate, because it is a big issue for many of those young people.

The conversations those young people had were very moving. I will never forget one particular young man. We were recording a promotional video to show to health professionals and as a fundraising tool, and we asked the young people at the hospice to say what it meant to them. The head of care was interviewing them, so that they were with somebody they knew and felt as comfortable as possible; she asked that young man, “What is the most difficult thing about your condition?” He considered the question for a moment, and what he said had a profound effect on me. He said: “Falling in love.” At that moment, it hit me that despite their physical limitations or their conditions these are still young people, with all the same feelings and hopes that we all experience. He wondered if anybody would ever love somebody who was, as he put it, “Like him.”

That local experience at Martin House is but one piece in a huge jigsaw. Support and palliative care do not come only through hospices such as Martin House, Hope House or the others that have been mentioned. I want to cover three areas: NHS funding for children’s palliative care; short breaks; and support with mobility for children under three.