Disabled People

Lord Patel Excerpts

Thursday 28th June 2018 Lords Chamber

[Lord Patel (CB)]

My Lords, I too look forward enthusiastically to the maiden speech of the right reverend Prelate the Bishop of London. I remember her work when she was Chief Nursing Officer, championing the cause of patients and their involvement, and introducing the concept of the modern matron. It is always a pleasure to take part in a debate led by my friend—I mean that in the true sense—the noble Baroness, Lady Thomas of Winchester.

I want to highlight the specific challenges faced by children and young people who suffer from life-limiting and life-threatening conditions. The needs of these children, who are often diagnosed at birth, is varied and often complex, making it crucial that they can access palliative care throughout their illnesses and their lives. The pressure on parents of having a child with a life-limiting condition is immense, and most relationships suffer, with 36% experiencing a breakdown of the family, making social care vital. A national study by Julia’s House children’s hospice and Bournemouth University found that 75% of couples caring for a child with a life-limiting condition have no access to respite care. The Carers Action Plan, launched at the beginning of June, says:

“The Department of Health and Social Care will fund a project on actions to promote best practice for local authorities, clinical commissioning groups, and other service providers and commissioners on carer breaks and respite care”.


Research by the children’s charity Together for Short Lives found that while 84% of clinical commissioning groups reported that they commission short breaks for children who need palliative care, more than one in five local authorities do not commission short breaks for children with life-limiting and life-threatening conditions, despite having a legal duty to do so.

The second issue concerns the grants to children’s hospices. Children’s hospices provide crucial support for parents and carers—92% of children’s hospice charities provided end-of-life care to children and young people in 2015-16. Despite this fantastic work, voluntary sector children’s palliative care providers receive, on average, 22% of their charitable costs from statutory sources, compared to an average of 33% for adult hospices. The NHS England Children’s Hospice Grant amounts to some £11 million per year—not a large sum of money—despite increasing costs and demands.

Medical advances mean that 55,000 young adults aged between 18 and 40 have life-limiting conditions in England. The Carers Action Plan also says that the Department of Health and Social Care will fund a project to support parent carers to navigate the transition from child to adult services as their child approaches the age of 18.

Will the Minister make sure that the project outlined in the action plan includes young people with life-limiting and life-threatening conditions in its scope? Secondly, in light of the fantastic work that children’s hospices do and the pressure they take away from the NHS services, can she commit to bringing about parity of funding between children’s and adult services, including by increasing the NHS England children’s hospice grant? If that matches the support given to adult hospice services, it will come to some £25 million per year—not a large sum, compared with a budget of £110 billion.

Finally, will the Minister commit to assist in providing NHS clinical commissioning groups, sustainability and transformation partnerships and local authorities with guidance reminding them that they are responsible for planning and funding short breaks for children with life-limiting conditions? I realise that the Minister is not directly responsible for what I am asking for, but if she agrees, will she pass this on to the relevant Minister and ask that answers be given in writing and placed in the Library?