Children’s Palliative Care

Debate between Caroline Johnson and Caroline Dinenage

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.

[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.

Oral Answers to Questions

Debate between Caroline Johnson and Caroline Dinenage

Tuesday 18th June 2019 Commons Chamber

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

9. What steps he is taking to ensure that people can access Changing Places facilities when they use NHS services.

[The Minister for Care (Caroline Dinenage)]

Last year, I announced £2 million funding for NHS trusts in England to install Changing Places facilities in hospitals; this is now available for trusts to bid for. We estimate that 250,000 people in the UK cannot use standard accessible toilets, and the fund could help to install well over 100 more Changing Places facilities.

[Dr Johnson]

Many of the disabled children who use Changing Places facilities also have a life-limiting or life-threatening condition. I welcome the increase in Changing Places facilities, but in this national Children’s Hospice Week could I ask my hon. Friend to go further in protecting these vulnerable children by increasing the children’s hospice grants to £25 million to give them the financial security they need?

[Caroline Dinenage]

I am really pleased that my hon. Friend has mentioned that it is Children’s Hospice Week. It is a great opportunity to pay tribute to the incredible work that children’s hospices do up and down the country, supporting some of our most poorly children and their families. I thank my hon. Friend for the work that she does on the all-party parliamentary group for children who need palliative care. The short answer to her question is yes; the NHS will match fund CCGs that increase their investment in children’s palliative care, including hospices, by up to £7 million. That is increasing support to a total of £25 million a year by 2023-24.

Learning Disabilities Mortality Review

Debate between Caroline Johnson and Caroline Dinenage

Tuesday 8th May 2018 Commons Chamber

[Caroline Dinenage]

I completely hold my hands up. I am not trying to mislead the House in any way. It is an independent document and the University of Bristol decided when it was going to be published. It was published on Friday without permission from or any kind of communication with the Department of Health and Social Care. I do not know what communication the university had with NHS England, but no information was passed to us. The beauty of having an independent document is that it can be published when the organisation sees fit and the Government will have to respond to it.[Official Report, 9 May 2018, Vol. 640, c. 8MC.]

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

During my career as a paediatrician, I have seen huge improvements in the care of children and young people with severe and moderate learning disability, many of whom have survived into adulthood when that would not have been the case years ago. Owing to the association between severe and moderate learning disability and other medical problems that may limit someone’s lifespan, it is unlikely to ever be equal to that of the general population, but we should always ensure that the care of the most vulnerable in society is as good as it can be, and I welcome the steps that the Minister is taking to ensure that it is. Such people are cared for jointly in hospitals and in the community, so will she confirm that hospitals and community care will work together following such reviews?

[Caroline Dinenage]

This is something that my hon. Friend, as a healthcare professional, obviously knows an awful lot about. She is right that a person having the ability to communicate, understand and identify when they do not feel well is important. These annual health checks, which are available to children from the age of 14 and into adulthood, are important because they enable any healthcare issues to be disseminated and communicated much more effectively between different healthcare and other providers.