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Support for Life-shortening Conditions — [Andrew Percy in the Chair]

Part of the debate – in Westminster Hall at 9:46 am on 7th June 2016.

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Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Health), Shadow DUP Spokesperson (Transport), Shadow DUP Spokesperson (Equality) 9:46 am, 7th June 2016

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 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.