Support for Life-shortening Conditions

David Simpson Excerpts

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.

--- Later in debate ---

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate. I congratulate the hon. Member for Pudsey (Stuart Andrew) on clearly outlining the case and how we all feel about this important subject. I apologise in advance for not being here to hear the shadow Minister and the Minister—I have apologised to them both. I have to attend the Select Committee on Defence, otherwise I would look forward to hearing what they have to say.

This issue is important to me, as it is to the hon. Member for Pudsey and others in the Chamber, which is why we are here. We are here to represent our people and their viewpoints on issues that they want to be debated. There are Members here with personal stories, some of which we have heard before, and I look forward to hearing some of those stories again.

Life-shortening conditions are those for which there is no reasonable hope of cure and from which children are expected to die, or for which curative treatment may be feasible but can fail. Children with life-shortening conditions need continuing palliative care throughout the trajectory of their illness. As I always do in Westminster Hall and in the House, I will give a Northern Ireland perspective. The Minister knows that health is a devolved matter in Northern Ireland, and I will therefore add to the debate and the knowledge we all have by addressing some of the positive things we are doing in Northern Ireland. By sharing knowledge from across the United Kingdom of Great Britain and Northern Ireland we have an opportunity to enhance and enrich our lives and to help ourselves to do things.

In Northern Ireland alone there are currently estimated to be some 1,300 children and young people living with life-shortening conditions. Many of those children have extremely complex and unpredictable conditions, and they are under the pressure of requiring round-the-clock care seven days a week. Due to medical advances and improved care, that prevalence is growing and more of those children are living into adulthood.

The hon. Member for Pudsey and my hon. Friend the Member for Upper Bann (David Simpson) referred to families and how important it is for children under pressure and in need of medical assistance to have family support. It is about their parents, their siblings, their grandparents, their family circle and their friends coming together to give support and help at the right time. Because the proportion of young people and children in the Province with life-shortening conditions is less than 1%, people might be inclined to believe that they are an underfunded and perhaps neglected section of the population, but fortunately they would be wrong. More can always be done, but in Northern Ireland the work to support young people and children affected by life-shortening conditions has been positive and is ongoing.

Health may be a devolved matter, and this debate may be most pertinent to NHS England, but such conditions affect British children across the whole United Kingdom of Great Britain and Northern Ireland, and it is therefore important to make such points. It is important to link the work of Government institutions across the United Kingdom to determine what is best practice and what is not, and to share ideas on the way forward. Hopefully this debate will give us an opportunity to do just that.

[David Simpson]

We have discussed palliative care. Does my hon. Friend agree that it is important that complete, wrap-around palliative care is given to those affected? What happens to children with life-shortening illnesses post-19 has been an issue across the whole United Kingdom for far too long, and we need to address it.

[Jim Shannon]

My hon. Friend has hit on the kernel of the issue.

We need to exchange medical advances among all regions of the United Kingdom. We want to ensure that we in Northern Ireland have information about what is happening in London, Scotland, Cardiff or wherever it may be. I also want to put on the record my thanks to all the doctors, nurses and consultants involved, and to all the other people who genuinely, consistently, honestly and energetically give their time for the children affected. I have some constituents who have attended Great Ormond Street children’s hospital, not only for life-threatening conditions but for life-changing ones, and we thank everyone for what they do.