Children’s Palliative Care

Caroline Dinenage Excerpts

Monday 1st July 2019 Commons Chamber

[The Minister for Care (Caroline Dinenage)]

I congratulate my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson) on securing a debate on this important matter. I particularly thank her for the fantastic work she does both as a medical professional—a paediatrician—and in her role as co-chair of the all-party parliamentary group for children who need palliative care, on which she has been a tenacious, passionate and very effective campaigner.

The APPG produced a report last year on children’s palliative care, to which the Government responded in full, and today we have an opportunity to pay tribute to the incredible work offered by children’s palliative care providers, many of which are hospices, in supporting some of our most poorly children and their families.

Children’s Hospice Week took place last month, and this year’s theme was “moments that matter.” As MPs, we are all very aware of the crucial role played by hospices in supporting and caring for our communities at a time of great need. I first became aware of that many years ago, when my mum was involved in fundraising to build the Naomi House children’s hospice near Winchester. In fact, she embroiled my whole family in a series of embarrassing fundraising activities to further her ends.

Since then, I have been privileged to visit Naomi House and, later, Jacksplace, a facility for young adults collocated on the site, to see for myself the incredible care and support they offer to very poorly children and their parents, both on site and more broadly in the community.

In my role as Minister for Care, I see how crucial palliative and end of life care services are for families in need. We know that many areas across the country are delivering excellent support and palliative care for children, but there is no room for any kind of geographical inconsistency, which is why it is crucial that more is done to challenge and support areas that are not providing it. That is why we have made children’s palliative and end of life care a priority in the NHS long-term plan, particularly in supporting children’s hospices.

NHS England’s hospices programme currently provides £12 million a year for children’s hospices, helping to provide care and support to children with life-limiting conditions and their families. I am delighted to announce, and my hon. Friend and other members of the all-party parliamentary group will be very pleased to hear, that NHS England has committed to increase the funding to £25 million by 2023-24. That will guarantee the additional £13 million for the children’s hospice grant. Clinical commissioning groups had been asked to provide match funding, but NHS England has now taken the decision to guarantee the investment after concerns were raised. As my hon. Friend said, match funding would not necessarily achieve the full investment anticipated.

I care very deeply for the hospice movement, and I hope this funding will provide it with full reassurance of the Government’s commitment to and support for its incredible work.

[Dr Caroline Johnson]

I thank the Minister for this fantastic announcement, and I know the money will make a phenomenal difference to the lives of the poorliest children in this country.

[Caroline Dinenage]

I thank my hon. Friend for that. She must take some of the credit, because it is her work, along with that of her co-chair of the all-party group, that has helped to secure these strong commitments from NHS England, so I wish to pay tribute to them this evening. But there is more. We know that children’s hospices are not evenly spaced throughout the country, so NHS England has also committed to undertake a needs assessment to understand whether additional investment, nationally or from clinical commissioning groups, is required where palliative care is provided by means other than hospices.

[Catherine McKinnell]

I, too, thank the Minister for this announcement, which is very welcome, but I cannot pass up this opportunity to intervene, when NHS England is in the mode of looking to fund these services. The hon. Member for Sleaford and North Hykeham (Dr Johnson) gave as an example of children with life-limiting conditions those with Batten disease. A family in my constituency have two daughters with Batten disease. It has progressed in one, but the other is receiving totally innovative enzyme treatment that has stemmed any development of the disease. Yet at the moment NHS England is unwilling to fund this treatment for 13 children in England. So I just want to put on record that this is about not only supporting children with life-limiting conditions, but giving them access to the treatment that will prevent them from going down that road if we can.

[Caroline Dinenage]

The hon. Lady has powerfully put her sentiments on the record, and I absolutely with them. In parallel with the announcements that NHS England has made on the much-welcomed investment, it is working to develop commissioning models specifically for children and young people with palliative care needs, to support CCGs. We know it can be difficult for some commissioners to meet the needs of this vulnerable group, and these models will help them overcome the challenge of delivering services for small and geographically spread groups of patients, whose conditions can fluctuate over the course of their lives. Together for Short Lives is involved in this important work, and I also wish to put on record my thanks to it for its continued support.

My hon. Friend mentioned Acorns hospices, which is currently consulting its staff on the closure of one of its children’s hospices at Walsall. I have been made aware that there is a financial aspect to this consultation, but there are other aspects to it, such as a reduction in the number of bed days used by in-patients. As I say, this is a consultation at this stage and I am hoping that the announcement of this money will help to make a difference to its decision.

In “Our Commitment to you for end of life care”, we set out what everyone should expect from their care at the end of life, and the actions being taking to make high quality and personalisation a reality for all in end of life care. The choice commitment is our strategy for end of life care, which, through the NHS mandate, NHS England is responsible for delivering through its national end of life care programme board, with all key system partners and stakeholders, including Together for Short Lives. This presents the best opportunity to continue to deliver the progress we all want to see and make the choice commitment a reality for both adults and children.

Looking to the future, the NHS long-term plan has set out a range of actions to drive improvement in end of life care and deliver the choice commitment. In addition to the £25 million of investment in children’s hospices announced today, the NHS long-term plan has made a number of commitments that will improve palliative and end of life care for children.

[Dr Caroline Johnson]

Along with the all-party group and Together for Short Lives, we have asked the Minister for three things this evening, and we appear to have received two of them—the extra money and the NHS England review. We will keep pushing for the third—respite care and an army of babysitters—but as Meat Loaf said, “Two out of three ain’t bad”.

[Caroline Dinenage]

As I said at the beginning, my hon. Friend is nothing if not utterly tenacious and passionate in her pursuit of this. I will talk about the short breaks now. She is absolutely right on this; I do not think families are necessarily looking for big long holidays, they just need short breaks, but for those need to be reliable and consistent. People need not to be let down at the last minute. That is the message I am getting loud and clear. Local authorities have a legal duty to commission short breaks, as established by the Breaks for Carers of Disabled Children Regulations 2011. Although the NHS role is not statutory and is a matter for NHS commissioners, the NHS may provide the clinical aspects of care to support such services, if appropriate.

According to the 2018 Together for Short Lives report, 84% of CCGs reported that they commissioned short breaks for children who need palliative care. That is an increase on the support in 2017, when it was 77%, but I recognise that we have much further to go. Parents desperately need short moments of respite and to know that their children will be well cared for at such times. The breaks also need to be reliable, and we will continue to work on that.

[Catherine McKinnell]

I just want to make sure of something. The needs of the child who requires care and support in order for there to be that respite are often too great, meaning that local authorities feel it is not within their remit, yet the clinical needs do not necessarily meet the NHS thresholds, so many families just fall through the cracks in the requirements. That often results in really difficult family situations and sometimes in family breakdown, which is not in anyone’s interest at all. If the Minister can do anything to consider this issue holistically, across the local authority and the health service, to try to bring things together and close the gaps, that will change the lives of so many families up and down the country.

[Caroline Dinenage]

The hon. Lady makes an excellent point with her customary insight. I care deeply about this matter, totally understand what she says and very much recognise the point that she is trying to get across. The problem is that local commissioners are best at designing the local services that best meet the needs of their local populations, but occasionally we find that families fall between the gaps between children’s social care and local health commissioning. I would be happy to continue to meet both co-chairs of the all-party group and Together for Short Lives to look at ways in which the Department of Health and Social Care can help to address the gaps so that people do not fall through them.

I thank my hon. Friend the Member for Sleaford and North Hykeham for securing this debate. I hope she has been reassured by the commitments made on ensuring the future of palliative and end of life care services for children.

Question put and agreed to.