Children’s Palliative Care — House of Commons, 2019-07-01
Topic: Health
Caroline Elizabeth Johnson (Conservative, Centre-right): 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.