Support for Life-shortening Conditions

Jim Shannon Excerpts

Tuesday 7th June 2016 Westminster Hall

[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.

[Mr Robin Walker]

May I add to that list hospital chaplains, who play an important role in supporting bereaved relatives of all religions and of none?

--- Later in debate ---

[Jim Shannon]

That is absolutely right. It is so important in a time of physical, emotional and spiritual need.

Although it is critical for the Government to provide appropriate support, non-profit organisations and charities are often the most innovative and forward-thinking, because they are made up of people who are motivated and dedicated to making a difference. The Government need to resource those people properly so that their efforts can bear fruit and those affected by their work can receive the benefits of such support.

The hon. Member for Pudsey referred to the changes in disability living allowance. I will not repeat his words, but I wholeheartedly support what he said. How important it would be if we had a realistic disability living allowance system in place for those from nought to three, as well as from three onwards. It would only be a small change. The Minister knows that I respect him greatly—he is responsible and positive, and others want to hear from him today—and I say respectfully to him that he could use his position to make that change. It would make a hands-on difference, as my colleague the hon. Member for Foyle (Mark Durkan) said earlier.

Northern Ireland Children’s Hospice and Together for Short Lives are just two of the many organisations that make a difference in Northern Ireland. I commend them for their efforts not only to provide support for young people and children with life-shortening conditions but to research and produce realistic and helpful ways forward. They make a positive contribution.

I will quote testimony from an anonymous parent who went through palliative care for their young child in Northern Ireland. It sheds some light on what the experience can be like for normal, everyday people in the unfortunate position of having to live through such circumstances:

“Having had a child born with very complex needs, we found ourselves in the horrendous position of spending the first and last seven months of our child’s life in a neonatal unit and children’s ward. Our daughter was only able to come home for two separate days during this period. This involved ambulance transportation and two nurses. The process of getting her home for good was so complex and arduous it could not be completed before she died. Although hospital staff were brilliant, a busy general ward is not appropriate for end of life care.”

That puts things into perspective and reminds us that we are dealing with real people’s lives in this House. What we do and say has an impact on people across the country.

The same charities that I mentioned earlier have published a set of recommendations for the Northern Ireland Assembly—it has responsibility for the issue, and the Minister has recently changed—that will, in their view, transform the lives of children and young people with life-shortening conditions. Among the seven recommendations are calls for a dedicated children’s palliative care consultant in Northern Ireland, improved access to multidisciplinary services for children who need palliative care and high-quality planning to support young people as they transition to adult services. Although we are doing those three things in Northern Ireland, if they were in place here on the mainland as well, it would be a step in the right direction to improve things.

Critically, the recommendations also call for a fully funded children’s palliative care strategy for Northern Ireland, which would address many of the core gaps and provide a framework for appropriate and consistent children’s palliative care services for every family who needs them in Northern Ireland in the future. In Northern Ireland at present, a growing number of doctors, paediatricians and GPs are interested in children’s palliative care and are gaining vital knowledge and experience every day. However, the number of senior paediatricians with the necessary qualifications to be considered expert remains in the single figures.

The recommendation for Northern Ireland—again, I hope it will happen on the mainland as well—is to have a regional consultant. That is vital, but just one consultant for Northern Ireland would not be enough. A better option would be to have two part-time consultants who could overlap in looking after patients. It would mean that someone would always be available, 52 weeks of the year.

Mr Percy, I realise that I have overstepped my time, and I apologise. I will end with these two paragraphs. We know all too well that the purse strings have been tightened, but those are just a few of the ideas put forward by people working on the front line. They are the ones who know best, the ones closest to the reality of palliative care for young people and the ones who must live and work with the medical and financial implications of Government policy. They are the ones we need to listen to if we wish to make the difference that I think everyone in this Chamber, this House and across the whole United Kingdom of Great Britain and Northern Ireland wants.

No child should have to suffer as a result of being diagnosed with a condition through no fault of their own, and no family should have to live through such suffering. We are in a position to make a difference. If national Government liaise constantly with charities and those affected, surely progress is possible.