Children’s Palliative Care

Catherine McKinnell Excerpts

Monday 1st July 2019 Commons Chamber

[Dr Johnson]

I thank my hon. Friend for his intervention. He is indeed right. The demand for children’s hospice care is rising because there has been an increase in the number of children with life-limiting conditions and because those children are living longer and therefore require care for a longer period. The cost of providing that care is also increasing at a rate faster than inflation and faster than the money that the sector receives, which means that in some areas the money received has fallen in real terms.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

The hon. Lady and I work together closely on this issue as co-chairs of the all-party parliamentary group for children who need palliative care, and we hosted an incredibly moving discussion during Children’s Hospice Week at which we heard really powerful stories from parents who had recently lost children. I am sure she appreciates my concern that the hospice care that children receive is often needed not just at the end of their lives but throughout their lives in order to give them the best life possible in the time that they have, and that it is not funded on a sustainable footing. Children’s hospices must not be left to rely on the ability of local areas to fundraise for them. They must be put on a sustainable financial footing to give the children and their families the support that they need.

[Dr Johnson]

The hon. Lady is right. In fact, NHS and local authority funding represents just 21% nationally of the money that children’s hospices need. The rest is raised by charities, but for some hospices in less affluent areas, raising the additional money that is required can be very challenging.

I welcome the fact that the Government have made their end of life care choice commitment, which is really clear about the care support choices that children should have. In our roles as co-chairs of the all-party parliamentary group for children who need palliative care, the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) and I carried out an inquiry last year to find out the extent to which this commitment was being met. We found that Ministers were at risk of failing to meet that commitment because of funding, as described, and because the quality of palliative care that children and families can receive is variable, depending on the area in which the child lives.

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[Catherine McKinnell]

The hon. Lady is being generous with her time and is making an excellent speech. While she rightly makes the case for children’s hospices, does she agree that they are not the only vital care support that children and their families need? They also need care at home, which is often provided by charities such as the Rainbow Trust. It is a hugely important service, but CCGs and local authorities are too often not commissioning it, and one can only assume that that is due to funding restraints. Does she agree that local authorities and CCGs should be incentivised and supported to fund and make such services available?

[Dr Johnson]

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.

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[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.

[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.