Support for Life-shortening Conditions

Stuart Andrew Excerpts

Tuesday 7th June 2016 Westminster Hall

[Stuart Andrew (Pudsey) (Con)]

I beg to move,

That this House has considered support for children and young people with life-shortening conditions.

Mr Percy, may I say what a pleasure it is to serve under your chairmanship for the first time? [Hon. Members: “Hear, hear.”]

Prior to entering Parliament, I spent most of my working life in the hospice movement, with both adults and children. I worked in hospices, including Hope House in Oswestry; East Lancashire hospice, which cares for adults in the east Lancashire area; and Martin House children’s hospice, which cares for children in the Yorkshire area. During that time, I saw children and their families at their most vulnerable, looking for any kind of solace in what are probably the most challenging circumstances that any of us could possibly imagine.

In my 14 years working in the sector, I saw the hospice movement adapt and grow to meet the needs of children and young people as medical technology and provision developed. That growth was achieved by listening and putting the patients first at all times. However, unfortunately, there are still cases across the broader palliative care sector where that does not always happen, and that is why this debate is so important. There are currently 49,000 children and young people—and the number is rising—living in the UK with life-shortening conditions.

[Nick Thomas-Symonds (Torfaen) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Percy. I congratulate the hon. Member for Pudsey (Stuart Andrew) on securing such an important debate. He just quoted a statistic. Does he agree that data collection is one of the most important factors? Robust data collection is needed so that we do not underestimate the number of children who are suffering from life-shortening conditions.

[Stuart Andrew]

The hon. Gentleman makes an important point, which I will come to later.

Some 49,000 children and young people are living with conditions that are life shortening, by which we mean conditions for which there is no reasonable hope of a cure and from which most of those young people are expected to die. The conditions can include conditions for which curative treatment may be feasible but can fail, as is often the case with cancers or congenital heart diseases; conditions for which premature death is inevitable but where there may be prolonged periods during which the child is well, such as Duchenne muscular dystrophy; progressive conditions such as Batten disease, without any curative treatment; and irreversible, but non-progressive, conditions that cause severe disability, leading to susceptibility to health complications and premature death, such as severe brain injuries.

The number of young people affected by one of those four categories of condition is equivalent to one child in every single school, and 50% of the 5,000 children who die in the UK each year will have one of those conditions. Of course, the number of people affected in other ways is much higher. Parents, siblings and other family members and friends can bring the number close to 400,000 people, which equates to more people than the population of the city of Leicester.

The 49,000 children and young people need palliative care from the point at which their condition is diagnosed or recognised—often at birth—until the end of their lives. There is an entire package of outcomes that good palliative care should achieve, which is quite different from that which adults receive given that children often need care throughout their entire life. Good care should meet children’s physical, social and emotional needs, enhancing their quality of life to ensure that the child and their family can come to terms with such life-altering issues.

[David Simpson (Upper Bann) (DUP)]

I congratulate the hon. Gentleman on obtaining this important debate. I am sure that many people here will have come into contact with children with such difficulties. Does he agree—he touched on this point—that more psychological help is needed for the parents, especially when the children are approaching the time of death? It is a very difficult time. There need to be very quick results. Help is needed for the parents as well.

[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?

[Mr Gregory Campbell (East Londonderry) (DUP)]

Does the hon. Gentleman agree that that single gesture would do more to transform the lives of many families than all the recommendations and assurances that we all want to give those families?

[Stuart Andrew]

I certainly agree. As I mentioned earlier, it was staggering to see the smallest child come with so much equipment to keep them alive. Larger vehicles enable such families to do the things that every family likes to do, for example to go out for the day. The lack of such a vehicle often creates more isolation for the siblings I mentioned a moment ago.

[Mark Durkan (Foyle) (SDLP)]

Further to that point, does the hon. Gentleman agree that, given the sensitivity of the issue, as he has laid out so well, it is terrible that the basic message to those families who have a child with a life-shortening illness is that the reason they cannot get that support is that the child is not old enough? That is a perverse message for those families.

--- Later in debate ---

[Stuart Andrew]

I take that point entirely. In this debate I want the issue to be considered carefully, because it seems perverse for a child to be too young to get the support they really need.

Medical advances thankfully mean that more young people with life-shortening conditions are living into adulthood. That should of course be celebrated but, as I have said, the transition from children’s services to adult services can be daunting and is often not joined up. There is currently a distinct lack of age-appropriate and developmentally appropriate palliative care services to meet the growing demand, so again I ask the Minister whether he will look into providing seed funding to voluntary sector organisations so that they can set up age-appropriate services for young people transitioning from children’s services to adult services.

I end by paying tribute to all the organisations, including Together for Short Lives, and all the people who were involved with Children’s Hospice Week a couple of weeks ago. Those dedicated people are really quite superb. I could never have done my job at Martin House or at Hope House without their tremendous effort. Their reputation helped us to raise the money we needed, and we should all pay tribute to the tremendous work they do. I hope that today’s debate will mean that we can all work together so that things can change for those 49,000 children and young people who are battling with the most difficult issues that we could possibly imagine.

[Several hon. Members rose—]

--- Later in debate ---

[Antoinette Sandbach (Eddisbury) (Con)]

I am very grateful to my hon. Friend the Member for Pudsey (Stuart Andrew) for securing this debate, which, as Members know, is on an issue that I feel very strongly about. It was heartening to hear about the work of the Hope House hospice that serves my constituents, although it is based over the border in Shropshire, and about the work of Claire House, which is a very effective children’s hospice on the Wirral.

Other hon. Members have spoken powerfully about the transport issues and the transition issues, so I will concentrate on the families and the role that they play. It is particularly important to do so this week because it is Carers Week, and we know the vital role that parents play.

My hon. Friend made an important point about the 2% funding that was mentioned in the Chancellor’s Budget and the fact that that funding is limited to adult social care. There is no justifiable reason for that discrimination. It is clear that local councils have cut their funding for services, particularly for short breaks. The impact of that on families is devastating. Thirty-six per cent. of families with children who have life-limiting conditions experience family breakdown. Therefore, it is vital that the Minister recognises that cuts by local authorities to the funding for those short breaks lead to increased burdens on Government elsewhere and that it is short-sighted not to fund those short breaks, which give the families and the siblings the vital respite that is often needed to ensure that they stay together as a cohesive unit and get the break from some quite onerous caring responsibilities. I do not say that in a negative way. All the parents absolutely love their children and want to give them the best they can in the short lives they have, but they need that break and the time for themselves.

[Stuart Andrew]

I am grateful to my hon. Friend for making that important point and I would like to give an example. I always remember speaking to a father at the hospice who said that if he got up eight times in the night he considered that a good night’s sleep. Does that not highlight just how important it is that the families get the respite that they need?

[Antoinette Sandbach]

It is absolutely critical. I have experienced the situation in which, because of advances in medical science, the doctors cannot say whether someone will fall on one side or the other of the line of likely life expectancy—fewer or more than 25 years—and they do not qualify for support from the voluntary sector. Hospices play such an important role in supporting families and I give credit to the Government for funding children’s hospices, albeit not at the same level as adult hospice care.

There is, however, a cross-border issue, which Claire House neatly exemplifies. The hospice treats a number of Welsh patients—it will not turn children away—but it does not get funded for any of the treatment it gives to them. I urge the Minister to consider having National Institute for Health and Care Excellence clinical guidance that would apply nationally and help to iron out some of the wrinkles, perhaps taking some of the best practice in the devolved nations. We have heard powerful contributions about some of the efforts being made in Northern Ireland. There is some learning that can be gained from across the devolved nations, but guidelines would ensure that hospices were put on a sustainable footing.

On that point, I support the call for joint commissioning and ask the Minister to consider what happens after the death of a child. I am here partly in my capacity as the chair of the all-party group on baby loss, and the subject has been debated elsewhere. There is important counselling support that could be put in place before the loss of a child and, indeed, afterwards. Hope House, for example, has a dedicated counselling centre and I am delighted that recently—in fact, just this week— I got confirmation from the Treasury that the Alder Centre could apply for LIBOR funding. The centre provides vital bereavement support for families in the north-west and I very much hope that it puts in an application before August. That is a beacon of light perhaps in the north-west and in the debate.