Support for Life-shortening Conditions

Debate between Stuart Andrew and David Simpson

Tuesday 7th June 2016 Westminster Hall

[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.