Hospices (Children and Young People)

Debate between Simon Burns and Sarah Champion

Wednesday 18th December 2013 Westminster Hall

[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.