Support for Life-shortening Conditions

Angela Crawley Excerpts

Tuesday 7th June 2016 Westminster Hall

[Angela Crawley (Lanark and Hamilton East) (SNP)]

It is a pleasure to serve under your chairmanship, Mr Percy, in your new appointment.

I congratulate the hon. Member for Pudsey (Stuart Andrew) on securing this debate and I apologise in advance that I may need to leave a little bit early to attend the Women and Equalities Committee.

The provision of support for children whose lives are shortened by illness is a difficult issue to discuss. No parent wants to think that their child will not reach full adulthood or that they will spend their whole life being ill. However, that is the reality for too many parents. Therefore, we must do all we can to support families with sick children, to allow them to make the most of their time together.

My own experience of this issue comes from supporting many families with a loved one who experienced a short life. Through the young carers service, I volunteered to support the families of children living short lives, including their siblings. Those families were brave and inspiring, triumphing over what was probably the saddest time of their lives. Those siblings overcame those periods and went on to be incredible young adults themselves.

I echo the sentiments of the hon. Member for Strangford (Jim Shannon), who thanked the medical professionals and practitioners, the organisations and the charities, in this area. They provide constant support and care throughout this sad experience and, in many cases, afterwards, as the families go through the bereavement process.

As we have already heard, the charity Together for Short Lives has estimated that 49,000 children and young people in the UK have life-shortening conditions. However, the charity itself admits that that number could fall short of the true number of children affected by these conditions. I echo the sentiments of the hon. Member for Torfaen (Nick Thomas-Symonds); he is no longer in his place, but he discussed the need for robust data collection to ensure that the support necessary for families is available and that we quantify that support in an adequate way. Although I recognise the challenges that all Governments face, for someone to have to explain to a family that they simply cannot support them in their time of need because of a funding issue is not sufficient; indeed, for those families, it is simply not good enough.

Investment in research is absolutely crucial to medical advancement, and it can also increase the life chances of many children and improve the experience of many families. The reality is that Governments, the NHS and local authorities are currently unable to budget sufficiently to ensure that there is enough money to meet the needs of these children because there is simply an unknown number of them. As I say, that goes back to the point made earlier about the need for correct data to ensure that adequate funds are provided. I put it to the Minister that this situation must be rectified so that we can adequately respond to the demand to close gaps in services and ensure that there is welfare provision for children in palliative care.

Funding is vital. Surveys have revealed that 89% of children’s hospices could be forced to reduce their services if their funding from Government was stopped, so I urge the Minister to consider the best way to support those valuable services, to ensure that there is continued funding for them; I hope that he will consider that issue.

The Scottish Government are committed to ensuring that people can access high-quality palliative care, regardless of their age, diagnosis, socioeconomic background or where they live. As part of that commitment, funding for children’s hospices has parity with that for adult hospices, and I hope that the UK Government will make the same commitment to provide such parity. The Scottish Government’s strategic framework encourages support and promotes the further development of holistic palliative care for those in the birth to 25 age group. I urge the UK Government to make the same commitment to children and young people across the UK.

I will touch briefly on the issue of welfare and the UK Government’s attitude to it. Many families who have children suffering from life-shortening illnesses will be hardest hit by the welfare reforms. At present, families with a disabled child in receipt of disability living allowance may be entitled to £60 per week. Under universal credit, that sum will be cut to £29 per week. In other words, the families of thousands of children will have their household budgets slashed at a time when they absolutely need such support.

Any parent of a child with a life-shortening illness wants to spend as much quality time as possible with their family. Instead, families affected by welfare changes will face substantial additional costs, as a result of having to pay for specialist aids and adaptations for their home, not to mention the additional visits to health services and the associated travel costs.

For many of the families across the UK who are caring for sick children, one of the greatest challenges that they face is accessing appropriate transport. We have already heard how vital it is that the Government consider the impact of their policy and ensure that mobility aid for families of children under the age of three is also in place, because we simply cannot discriminate on the basis of age. Those families need that vital support, but children under the age of three who have life-shortening conditions are currently ineligible to receive it. I hope that the Government will reconsider that.

A growing number of children within that age range require extra medical care, including palliative care. Some babies and their families have permanent wheelchairs and are unable to use them, or specialist buggies, without the necessary transport provision. Without specialist adapted vehicles, those families are unable to transport their young children to and from hospital, which obviously disrupts family life. It also means that families will miss out on making valued—in fact, cherished—memories with their children.

In closing, I must highlight that the burden of providing care for sick children can push families into poverty. In Scotland, and indeed in my constituency, 25% of children and young people with life-shortening illnesses live in the areas of highest deprivation. Providing equal access to sources of support is of paramount importance, to ensure that those children get the most out of their short lives. Helping them to achieve that is dependent on our giving as much support to their families as is required, so I urge the Government to take all measures necessary to provide that support as much as they can.