Hospices (Children and Young People)

Sarah Champion Excerpts

Wednesday 18th December 2013 Westminster Hall

[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?

--- Later in debate ---

[Mr Simon Burns (Chelmsford) (Con)]

I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on securing this important debate. It was refreshing to listen to such a fluent and interesting speech by someone who has done so much work in the hospice movement before entering this House three and a half years ago.

As many hon. Members have said, and others will know from constituency experience, the hospice movement is fantastic. The dedication of those who work in it, whether providing the care or, equally importantly, raising the finances in their community, is vital. We cannot thank them enough for their dedication and hard work.

We have concentrated in the debate, as people often do when talking about the hospice movement, on children’s and adult hospices, which are vital. However, there is an area in between that is all too often overlooked: the need for more palliative care, and hospice care and treatment, for young people aged between 18 and 40. The needs of someone in their late teens or 20s are completely different from the needs of children, or of aged adults, who make up a large proportion of the people cared for in adult hospices. Things have been improving in recent years, with greater recognition of the situation, but I do not think enough account was taken in the past of the age group in question.

I will be honest: 10 years ago it would never have occurred to me that there was a problem. I assumed that someone who was not a child would go to an adult hospice, where the care would be wonderful—as it is—and that would meet the needs of even a young adult. However, when I met my constituent Denise Whiffin, and the friends around her, it was brought home to me how much extra attention and concentration is needed to meet the special requirements of that age group. Denise Whiffin’s son Jonathan was diagnosed, aged three, with Duchenne muscular dystrophy. Of course he was cared for through the children’s hospice movement. However, when he was in his late teens that was of course no longer the most appropriate form of care. He moved to an adult hospice, with people who were much older, and whose needs, outlook, attitudes and requirements were totally different.

Denise Whiffin and others in my constituency looked around and came across a role model. I believe that it was the first hospice to be created in this country—in Oxfordshire—specifically for those aged 18 to 40. The group was inspired to try to replicate that in Chelmsford, to provide the same sort of help for mid-Essex. Those involved have done sterling work in the past decade, raising money from scratch. For some years they have been able to provide a wide range of badly needed services for young adults, in the patient’s home setting. Those things include specialist advice and support; unique care packages for each patient, drawn up by the clinical nurse specialist; expert advice on transition from children’s to adult services; practical nursing care; respite care in the home; counselling—which is vital for many families and young people; and a chaplaincy service and music therapy. They have expanded because of demand for specialist care for the age group, and their hope and ambition now is that in due time they will acquire premises in which to provide health care and palliative care.

[Sarah Champion]

My colleague has hit the nail on the head, and his example of a hospice is exemplary. However, aside from the social aspect, one of the most shocking things for a child is that on their 18th birthday the support of the paediatric consultant who has been with them all the way through is taken away. They are given an adult consultant who might not be able to see them for three or four months.

[Mr Burns]

The hon. Lady makes a valid and important point, which comes as no surprise, given her distinguished professional work before coming to this House after the Rotherham by-election. It is about continuity of care. Just because someone reaches a cut-off point in their age and lifespan, they should not necessarily—automatically—have to change from those who have been providing their health care up until that point. The individual’s needs and requirements might progress or change so that their consultant or other health care practitioner needs to change because of the skills that they have, but that is a totally different argument. I hope that my hon. Friend the Minister and the Department of Health as a whole will look at the matter to see how we can provide greater continuity of care from health care professionals where that is appropriate, so that there is not an arbitrary cut-off point.

I do not want to detain hon. Members much longer, because I know that others want to contribute, but I do think that we must bear this in mind. Fantastic work is going on, as has been shown by a number of interventions and speeches during the debate, in children’s hospices and, equally, in adult hospice care, but let us concentrate more on developing for the young people in the 18-to-40 age group provision that meets their specialist requirements, so that they, too, can have provision and quality of care that is tailored to their requirements and demands.