End of day adjournment debate on Children’s Palliative Care - Jul 1

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

The subject of tonight’s debate is not an easy one to talk about, but it is very important. This evening, I am going to talk about the 49,000 children throughout the UK who have life-limiting conditions.

As a consultant paediatrician, I have looked after quite a number of these children over the years. I have been the person who has made that diagnosis, who has given that devastating news to families, who has looked after these families during various different points of the journey and, indeed, who has been there in those final minutes and hours. Through that time, I have watched as some of these families have just about managed, but others have really struggled to cope at all and have gone from crisis to crisis. For me as a paediatrician, the opportunity to be a politician gives me the chance to stand here and advocate for those families and for those children and to use this platform—this House—as a vehicle for change, and to make these treatments and the care that these children receive much better.

Children’s palliative care is not, as it is often misrepresented to be, only about the care that someone receives at the very end of their life: it is about improving the quality of their life while they are living with that life-limiting condition from the point of diagnosis. I shall take as an example a child with Batten disease. A child with Batten disease may present as apparently healthy, but they have a gene that will ultimately cause neuro-degeneration. So they will lose the skills that they had—the walking, the talking. Their skills will go backwards, until they become increasingly dependent on their families. Often, they die of chest infection.

The care for those families involves helping the child, the family and the siblings to understand the diagnosis and prognosis, providing support such as physiotherapy to keep the child mobile for as long as possible, providing home adaptions to train their parents in how to use things such as Mic-Key buttons, to provide tube-feeds and to use wheelchairs and hoists in the care of their children, and helping them with medical things such as seizure management, giving medication and speech therapy, as well as with how to navigate the benefits system, applications for a blue badge, education and when to move from mainstream into more specialist provision.

Jim Shannon (Strangford) (DUP)

I thank the hon. Lady for bringing this matter to the House. There will not be a single elected representative who is not aware of someone who has been through this. Is she aware that the money that each children’s hospice has to spend each year to meet the needs of seriously ill children and their families has grown to an average of £3,681, which is a 4.5% increase between 2016-17 and 2018-19, faster than the rate of inflation, yet the funding has been cut or frozen for each of the last three years, leaving children’s hospices struggling to make ends meet? Does she share that concern, which we all have?

Dr Johnson

I thank the hon. Gentleman for his intervention. I do indeed share his concern and will come to some of those figures in a moment.

To return to the care that is provided during the palliative care process, finally, the care will indeed be about end of life care and bereavement counselling. Children’s hospices throughout the United Kingdom provide some of this fantastic care. They have specialist medical, nursing and other professional staff and volunteers, and I pay tribute to them, as I know other Members do, for their dedication and the fantastic work they do.

Tim Loughton (East Worthing and Shoreham) (Con)

My hon. Friend is a great ambassador on this very important subject. I pay tribute to the Chestnut Tree House hospice, which does such a fantastic job in West Sussex. Does she acknowledge that, because of medical technological advances, many of these children will live for much longer than was anticipated many years ago, and for many of them this is about not care in a hospice but outreach care outside the hospice? It is therefore important that we have good support packages for the parents, including respite and care over a longer term, and that we are more imaginative in the way we build houses, so that children with life-limiting conditions can live in houses—perhaps new social house build—that reflect the increasing physical demands that they will have, so they can stay in their homes to be cared for appropriately?

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.

David Linden (Glasgow East) (SNP)

I am grateful to the hon. Lady for giving way, and I pay tribute to her expertise on this issue. Does she recognise that north of the border, in Scotland, the Scottish Government have recognised the need for parity of funding between adult care and children’s care, and that that is not the case in England? Will she join me in calling on the UK Government to look at the model in Scotland to see what a difference we have made and what has been delivered by, for example, CHAS—Children’s Hospices Across Scotland?

Dr Johnson

I thank the hon. Gentleman for that intervention. I am not familiar with the details of how hospices are funded in Scotland, but one of our report’s recommendations was that the grant for children’s hospices should be increased to £25 million. That is something that I repeat this evening.

On 27 December last year, we received a late Christmas present when Simon Stevens, the chief executive of NHS England, announced that £7 million of funding over the next five years would be available to children’s hospices each year in addition to the £11 million children’s hospice grant, if the clinical commissioning groups could provide match-funding. I understand the benefits of match-funding because it increases the engagement of the CCGs locally, but where CCGs are not providing the funding, it can lead to services not being provided properly in that area. Also, later, when the long-term plan was produced, the detail showed that this funding was not only for children’s hospices but for other palliative care services. This was recognised as useful for providing services for children in areas currently not covered by a hospice, but it could equally mean that the money might be diluted into other causes and not reach the children who need it.

Two weeks ago, as the hon. Member for Newcastle upon Tyne North said, we joined our secretariat, the excellent charity Together for Short Lives, which does much work in advocating for these children and their families, and we met parents and representatives from several hospice charities to discuss these issues further. One real concern to us at that time was that one of the charities, Acorns, which receives the most Government funding, was struggling to raise charitable donations in its area to cover costs and was consulting on closing one of its children’s hospices, in Walsall, meaning that families would have to travel much further for the care and support they needed. I know that that is something that no one in this House would want to see happen. Indeed, I have raised the issue with my hon. Friend the Minister for Care and my right hon. Friend the Prime Minister, both privately in and in the House. I ask the Minister to raise the children’s hospice grant to £25 million a year and to ring fence that money. It is a small amount within the NHS budget as a whole, but it would make a huge difference to children receiving hospice care and their families.

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.

10.15 pm

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.