Support for Life-shortening Conditions

Nick Thomas-Symonds 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.