Children with Life-limiting Conditions

Antoinette Sandbach Excerpts

Tuesday 29th January 2019 Westminster Hall

[Antoinette Sandbach (Eddisbury) (Con)]

It is a pleasure to serve under your chairmanship, Ms Dorries. I am grateful to the hon. Member for Strangford (Jim Shannon) for securing the debate and for his continuing interest in the matter.

It is exceptionally difficult to care for a child with a life-limiting condition. The Government have made progress on making things slightly easier in areas such as bereavement care, but I recognise that more needs to be done to support families who are going through the process, especially in terms of palliative care. The issue affects not just the 49,000 children in the UK who live with life-limiting or life-threatening health conditions, but their families and those who care for them. Those who are suffering from such conditions need the best medical care possible, but the families require care too, whether that is in the form of respite breaks or financial support for adjusting their homes and lives.

I sympathise somewhat with the Minister: she has to respond on behalf of her Department, but it is not just her Department that acts in this space. Local authorities, the voluntary sector and other Departments all have a role to play, and it will be possible to tackle the challenges faced by families only by taking an integrated approach that encompasses all of those groups.

[John Howell (Henley) (Con)]

My hon. Friend mentions the adjustments that need to be made in people’s homes. To what extent does she think local councils are living up to expectations in that respect?

[Antoinette Sandbach]

I will come on to that point, but I know that in my area the situation is certainly not as good as it might be.

I hope that the Minister will commit to ensuring that children have a right to an integrated assessment, a plan and a personal budget to address their individual needs. Likewise, I hope that she will agree to review health and social care law, not only to strengthen the rights and entitlements for disabled children and their families, but to clarify them. That clarification would be hugely welcome, because uncertainty leads to some local authorities failing to meet their obligations. For instance, Together for Short Lives reports that 21% of local authorities are failing to meet their legal duty to commission short breaks for disabled children. That postcode lottery is deeply unsatisfactory and requires the Minister’s attention.

I was concerned to discover from December 2017 data that only one of the four Cheshire clinical commissioning groups was developing a strategy or care pathway for children with life-limiting conditions. The same data shows that although some of my area’s CCGs offer out-of-hours paediatric palliative care consultants, community children’s nurses and psychological support, others do not. Given that families have 24/7 responsibility, should not the NHS? My area is lucky to have specialist paediatric care close at hand, thanks to Alder Hey Children’s Hospital, but it is clear that even in Cheshire more must be done, which probably means that more funding must be put in place.

The all-party parliamentary group on baby loss wrote to the Chancellor at the end of last year to ask for a guarantee of the future of the NHS England children’s hospice grant beyond March 2019; for an increase in its value to £25 million per year; for parity of funding between children’s and adult hospice and palliative care charities in England; and for a funded, cross-departmental children’s palliative strategy for England. I was pleased to see that the issue received attention in the NHS long-term plan, but I am concerned by the mismatch between NHS England’s 27 December announcement about children’s hospice funding under the plan, and what was published in the plan itself on 7 January: the announcement said that the money was for hospice funding, but the plan said that it would be for palliative services, including hospices. Will the Minister clarify whether that £25 million will be for children’s hospices only, or for a wider group of children’s palliative care services?

Likewise, will the Minister guarantee that the £11 million children’s hospice grant will be protected and increased as a result of the long-term plan? It is vital that we resolve that, because in 2006-07 the children’s hospice grant contributed 14% towards the cost of providing clinical care in children’s hospices across England, but by 2015-16, when the grant had risen to £11 million, it contributed an average of just 8%.

I hope that the Minister will offer the reassurance that so many families deserve, not just about the finances but about integration and ending the postcode lottery. I am sure all hon. Members agree that these families need support, but now we must build on that agreement and implement a sustainable, compassionate plan to support them.