Hospices (Children and Young People)

Jim Shannon Excerpts

Wednesday 18th December 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to say a few words in relation to this topic. I thank the hon. Member for Pudsey (Stuart Andrew)—his constituency is wonderfully named—for his contribution. It summed up and set the scene for how we all feel about the matter. We thank him for his compassion and knowledge on the issue; it was a real pleasure.

Whenever I think of this issue, I think of Northern Ireland Hospice and its good work, and of all the other hospices throughout the United Kingdom, which other Members have spoken about, and of the scourge of cancer and specifically how it affects young people. Yesterday we had a debate on rare diseases. Perhaps the two debates could have been merged together—one on rare diseases and palliative care—because they very much go hand in hand.

As well as praising the hospices, I would also like to mention the Macmillan nurses, who, in many cases, make life just that wee bit easier for the families and those concerned. I pay special credit and thanks to those caring men and women who manage to make life that little bit less stressful for those suffering from cancer and for their families.

[Robert Flello (Stoke-on-Trent South) (Lab)]

I, too, thank the hon. Member for Pudsey (Stuart Andrew) for securing the debate, and there is also a hospice—the Donna Louise children’s hospice—in my constituency, which does marvellous work. Will the hon. Gentleman join me in commending the caring professionals, whether volunteers or paid staff, who will be working in hospices over Christmas and new year, caring for people in often difficult, if not tragic, circumstances?

[Jim Shannon]

I thank the hon. Gentleman for his intervention. I do join him in commending them, as does everyone inside and outside the House. We recognise the tremendous work they do—they are on call at all times. I sometimes wonder how they handle the sadness and emotion they have to confront each and every day as part of their vocation.

Northern Ireland Hospice is committed to fostering, encouraging and supporting a quality research culture internally, regionally, nationally and internationally, and it is known for the high level and quality of care it gives. My right hon. Friend the Member for Belfast North (Mr Dodds), who has just left, referred to the Northern Ireland Assembly Health Minister’s commitment to contribute £2.3 million to hospices, and that commitment by elected representatives shows the appreciation of what hospices do.

It is essential that those receiving end-of-life care have the best care available and are made as comfortable as they can be in their last days. It is also essential, as the hon. Member for Pudsey said, that the family have all the information they need, whether that is in a hospice setting, the patient’s home or through a palliative care package—those are the three areas that have to be looked at.

Some 49,000 young children in the United Kingdom of Great Britain and Northern Ireland live with a life-limiting or life-threatening condition and need palliative care. There are inspirational professionals working alongside them in their family homes, hospitals, community settings and hospices across the United Kingdom.

It is horrifying to think that if we had more children’s hospices, they would be filled, because the need continues to grow. Every time we find a drug that works against a strain of cancer, for example, a resistant strain appears. For that reason, it is essential we put money into not simply hospices and nurses, but research, and I am convinced the Minister will take the issue of research on board in her response.

I recently read a report stating there is a real danger that palliative care and palliative medicine will be the least evidence-based subjects in medicine in a few years’ time unless vastly more research is done. While palliative care is vital, research is equally important, so perhaps the Minister can give us some thoughts on that.

I hope we are all blessed with young children and grandchildren who are bubbly and full of life, but some families are not. Those families have to live with a child who is ill, and it is tremendously heartbreaking to acknowledge that. Before yesterday’s debate on rare diseases, the Teenage Cancer Trust sent us some information saying that 30% of children with life-threatening diseases will die before they reach the age of five. Again, that puts things in perspective.

Macmillan nurses told me that the sufferer’s mood is affected by their family. If the parents are content and relaxed, the child is likely to reflect that. This is about the family and everyone involved. It is also about the day trips and the residentials, which the hon. Member for Pudsey referred to.

We have fantastic charities, such as the Make-A-Wish Foundation, that help children with terminal illnesses live a dream. However, that in no way absolves us, as MPs, from our responsibilities to the families, and nor does it absolve the Government or the regional Assemblies from theirs.

Together for Short Lives has also highlighted an issue to me. Will short breaks for children who need palliative care be fairly and sustainably funded from ring-fenced funding allocated to local authorities for short breaks? We look forward to the Minister’s answer, and I trust it will be yes.

Another issue highlighted to me was benefits for families. As soon as the child is taken to the next scene of life—as soon as they leave this life—the parents are left to deal with their grief and their debt. Sometimes, handling the first overrides handling the second. There must be some leeway over cutting off benefits, so that the family has time to realise their financial situation and handle it accordingly. The Minister does not have direct responsibility for the benefits system, but will she say how we can help families get through the switchover at a time when grief is the ultimate driver of where they are? What can we do to ensure that they are entitled to time off and that their benefits are reduced gradually?

[Sarah Champion (Rotherham) (Lab)]

On the point about families, no parents separated as a result of the death of their child in the four years I was at Bluebell Wood, whereas the average in the country is 50%. Hospices are also very good at helping families to secure benefits and housing and to deal with their grief. The hospices therefore give holistic care.

[Jim Shannon]

I thank the hon. Lady for contributing her personal knowledge on that matter. I ask the Minister to tell us how the Government will improve support for the families of children with life-threatening or life-limiting diseases who die, to ensure that family members are entitled to time off and to have their benefits reduced gradually.

To conclude, a child’s illness is the most stressful thing a parent can face. We are failing the family and, by extension, the child if there is a lack of support. That can and, indeed, must change. I ask the Minister to outline what will be done to bring about the changes the hon. Member for Pudsey and others have outlined. We cannot heal these children—I wish we had that talent, but we do not, as much as we might want it—but we can make the journey easier. When will we start to deliver the extra, full care that is so needed?