Hospices (Children and Young People)

Simon Burns Excerpts

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.

[Mark Durkan (Foyle) (SDLP)]

On the point about supporting people in the age group to which the right hon. Gentleman refers, does he agree that it is important for Government at all levels to encourage not just the hospice movement, but housing associations and good providers of sheltered housing models and supported housing models to think about how they might style particular developments and units precisely to accommodate people in that age group, so that they can live in a supported context but have premises that guarantee them more independent living, which is more appropriate to that age group?

[Mr Burns]

I am very grateful to the hon. Gentleman, too, for that constructive intervention. I know that, particularly in health debates, the term “holistic approach” is for ever used and can become rather hackneyed, but I do think that such an approach is crucial both in general health care in the NHS and in specialist areas such as palliative care, hospice care and end-of-life care. There really must be an holistic approach, and this is not simply about different sections of the health care community. As the hon. Gentleman says, it also involves housing and, as the hon. Member for Rotherham (Sarah Champion) said, the benefits system, where that is appropriate, for a number of people, because it is at this time in someone’s life and the life of their family and friends that they want the minimum amount of hassle, as they are going through some of the most difficult parts of their lives or their loved ones are. We want to minimise the extra pressures, concerns and worries, and that can be done through a more joined-up, holistic approach to the whole provision of care.

I know that the Minister will be listening very carefully to the comments made in the debate. I know that the Department of Health is extremely committed to the whole area of palliative care, end-of-life care and the hospice movement. I know that my hon. Friend will go away from the debate, reflect on a number of the points that have been made and do her best to help to address a number of the issues that I and other hon. Members around the Chamber have raised in the course of the debate.