Children’s Palliative Care

Debate between Caroline Johnson and Catherine McKinnell

Monday 1st July 2019 Commons Chamber

[Dr Johnson]

I thank my hon. Friend for his intervention. He is indeed right. The demand for children’s hospice care is rising because there has been an increase in the number of children with life-limiting conditions and because those children are living longer and therefore require care for a longer period. The cost of providing that care is also increasing at a rate faster than inflation and faster than the money that the sector receives, which means that in some areas the money received has fallen in real terms.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

The hon. Lady and I work together closely on this issue as co-chairs of the all-party parliamentary group for children who need palliative care, and we hosted an incredibly moving discussion during Children’s Hospice Week at which we heard really powerful stories from parents who had recently lost children. I am sure she appreciates my concern that the hospice care that children receive is often needed not just at the end of their lives but throughout their lives in order to give them the best life possible in the time that they have, and that it is not funded on a sustainable footing. Children’s hospices must not be left to rely on the ability of local areas to fundraise for them. They must be put on a sustainable financial footing to give the children and their families the support that they need.

[Dr Johnson]

The hon. Lady is right. In fact, NHS and local authority funding represents just 21% nationally of the money that children’s hospices need. The rest is raised by charities, but for some hospices in less affluent areas, raising the additional money that is required can be very challenging.

I welcome the fact that the Government have made their end of life care choice commitment, which is really clear about the care support choices that children should have. In our roles as co-chairs of the all-party parliamentary group for children who need palliative care, the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) and I carried out an inquiry last year to find out the extent to which this commitment was being met. We found that Ministers were at risk of failing to meet that commitment because of funding, as described, and because the quality of palliative care that children and families can receive is variable, depending on the area in which the child lives.

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[Catherine McKinnell]

The hon. Lady is being generous with her time and is making an excellent speech. While she rightly makes the case for children’s hospices, does she agree that they are not the only vital care support that children and their families need? They also need care at home, which is often provided by charities such as the Rainbow Trust. It is a hugely important service, but CCGs and local authorities are too often not commissioning it, and one can only assume that that is due to funding restraints. Does she agree that local authorities and CCGs should be incentivised and supported to fund and make such services available?

[Dr Johnson]

I thank the hon. Lady for her intervention.

Turning to those who do not receive valuable hospice care, as a doctor I have seen too many families in crisis, struggling to cope with patchy provision or the lack of hospice or home care or respite. As children’s hospices are frequently set up by charities, their locations across the country have not been planned, so some families find themselves too far away from services to be able to use them. I want NHS England to review the provision of services to ensure that care is no longer patchy and no longer dependent on where a child lives. The hospices that I have spoken to have asked me to make the Minister and NHS England aware of how the funding cake is split. Hospices—both the well funded and the less well funded—feel that funding should be disbursed more fairly based on clinical need, so an examination of that situation would be helpful.

Another area on which I would be grateful for the Minister’s response is respite care or short breaks. For most people, an evening out requires a quick call to a friend or relative. If Mr Johnson and I want to go out for dinner, I just need to ask someone to come to our house for a few hours. I do not need to spend weeks planning to take the children away for several nights or a week at a time. I can pop out for a curry for two hours. For families whose children have many complex medical and physical needs, things are much more difficult. Short break provision is often patchy and inflexible. I might want a babysitter so that I can attend my brother’s wedding, but for someone whose child has complex needs, if the weekend on which respite care is available is not the same weekend, that may not be much help. Sadly, having got all the plans in place, respite care is all too often cancelled at short notice. In my time as a doctor, I have seen families pitch up at the hospital with their child, who has remained in an acute hospital bed for the weekend simply because, where else can they go?

I would like an army of help for families, not a patchwork system. I want each family to have the guarantee of short breaks and the opportunity to access trained care assistants who can be booked to come to the family home, like any other family can have if they want to go out for a meal or attend a sibling’s school play—Mr Speaker, you mentioned that your daughter Jemima was in a play recently, and I am sure that it went extremely well. Children with complex needs may have siblings, and the parents will want to be able to attend their plays. The Government should provide such a service through the NHS, and there should be a set amount of guaranteed free home respite care time per year, perhaps with additional subsidised capacity above that amount.

I know the Minister understands how important children’s palliative care is to children and families, and I know how hard she has worked and pushed for this issue in her Department. I know she understands the need for the Department to work with NHS England to review this provision and how it is spread across the country, and I hope she will be able to assist with the provision of respite care breaks so that these very vulnerable families find it easier to have short breaks and access to childcare, like any other family and any of us would want. Most importantly, I ask the Government to make sure that NHS England now honours the original announcement by recommitting to protecting the children’s hospice grant for the long term and by increasing it to the £25 million a year that is needed.