Support for Life-shortening Conditions

Barbara Keeley Excerpts

Tuesday 7th June 2016 Westminster Hall

[Barbara Keeley (Worsley and Eccles South) (Lab)]

It is a pleasure to speak with you in the Chair, Mr Percy. I also thank the hon. Member for Pudsey (Stuart Andrew) for securing this important debate, to which he has been able to bring considerable knowledge. I congratulate him on how he opened the debate. We have had many important contributions this morning from the hon. Members for Strangford (Jim Shannon), for Castle Point (Rebecca Harris), for Lanark and Hamilton East (Angela Crawley), for Eddisbury (Antoinette Sandbach) and for Colne Valley (Jason McCartney). We have also had some shorter contributions from my hon. Friend the Member for Torfaen (Nick Thomas-Symonds) and the hon. Members for East Londonderry (Mr Campbell), for Foyle (Mark Durkan), for Eastbourne (Caroline Ansell) and for Glasgow Central (Alison Thewliss).

Many of us have talked about the charity Together for Short Lives. We thank it for its input to the debate, which it has welcomed. It feels that discussion of children who are dying and the support they need is hindered by a public taboo. The palliative care needs of children can be coupled inappropriately with those of adults, when, as we have heard, their needs are much more complex and focused as much on quality of life as on quality of death.

A key point that has been made in this debate is that we do not have enough data to commission and fund appropriate services to support children with life-shortening illnesses and their families. The most recent estimate is that 49,000 children under the age of 19 are living with life-limiting or life-threatening conditions, although I understand that that is based on data from 2009-10. Without Government monitoring of changes in the data, there are real difficulties in providing the care and support needed by children, young people and their families. Local authorities and CCGs already find it challenging to commission and provide palliative care locally because relatively few children in any given area will need that care. Without more accurate data, it is harder to commission and provide the services needed. Cross-departmental collaboration and better co-ordination among organisations are also needed.

The issue with funding is clear. There are different funding streams from different Departments and from local organisations. As we have heard, a remarkable amount comes from fundraising. We have specialised children’s palliative care commissioning, general children’s palliative care commissioning and the commissioning of children’s social services. NHS England, CCGs and local authorities all have a part to play in funding palliative care services for children, but as we have heard it is often unclear who is responsible for funding different services. There is terrible uncertainty about the availability of future funding for services. Indeed, Together for Short Lives found that CCGs contribute just 10% on average to the cost of the care that children receive in hospices, compared with an average contribution of around 30% to the cost of care in adult hospices. As we have heard from the hon. Member for Eddisbury, the Department of Health is testing per-patient funding for children’s palliative care for commissioners to use in 2017, but I understand that is not going to be mandated, so there will be no obligation for clinical commissioning groups to adopt that level of funding. Will the Minister clarify how the Government plan to ensure that adequate funding will be provided in future for palliative care services for children?

We know that funding from local authorities for children’s social care has become even more stretched. Local authorities can of course raise additional funds for adult social care through the social care precept, but that does not apply to children’s services. We also know there has been a significant increase in the number of referrals to children’s social services since 2009. The Local Government Association has raised concerns that the 40% real-terms reduction in core Government funding over the previous Parliament and subsequent budget cuts have meant that local authority services are being reduced significantly. The 2014-15 budget figures show a reduction of 20% for spending on children’s centres and early-years services since 2010.

We have heard quite a bit about breaks. Although local authorities are required to provide short breaks for disabled children, the funding for this has decreased, which means families are receiving less support, despite having significant caring responsibilities. We have heard about the extent of the caring responsibilities for carers of children with life-limiting conditions. The Every Disabled Child Matters partnership found that 58% of local authorities had cut their short-breaks spending by an average of 15% between 2011 and 2015, with some councils cutting this funding by up to 26%. In carers week, the fact that family carers are receiving less support and fewer short breaks should be of real concern to us.

I do not often go to my iPad for notes, but I had a look at Lucy’s blog; what she says about her mother as her carer is important.

“In reality, it is all down to my mum. She phones person after person, arranges blood tests and appointments and sorts out all of my medication, one of which has to be couriered down from London every few months, and when I’m on intravenous antibiotics, she drives to the hospital to pick up the drugs and picks up the equipment from the district nurses. My mum does my TPN and medication every day, she administers IVs and takes blood from my hickman line, gives injections, dresses wounds, can catheterise me, mixes and prepares medication, and so much more; she can do things many nurses can’t do...She liaises between consultants and departments. She sorts out my prescription and collects medication. She deals with my personal budget and pays my carers. She’s my mum, nurse, carer, PA and best friend. It’s all down to her. She’s given up her life to keep me alive, not having a holiday or break in 6 years.”

She should be able to have a holiday and a break.

As has been said in this debate, we need to find a way to hold local authorities to account for the money to spend on short breaks for disabled children. I hope the Minister can tell us what action he will take to make sure that seriously ill or disabled children and their family carers can access short breaks.

In March 2015, the Health Committee published a report of its inquiry into palliative and end-of-life care. It called on the Government to ensure that future funding proposals fully recognise the importance of the voluntary sector. The report also called on the Government to set out how they intend to ensure the sustainable long-term funding that we have talked about in this debate. It is clear from the many contributions today that improvement is needed to ensure a sustainable funding settlement for children’s palliative care in future.

I want to touch briefly on the importance of social and community palliative care and support services. Hospices do a wonderful job, but children are not always in a hospice. The Rainbow Trust children’s charity supports more than 2,000 families across England whose children have a terminal or life-threatening illness. This includes families in my constituency. The trust supports 99 families in Greater Manchester, including nine families in Salford. The family support officer for the team in Greater Manchester says that the most common concern raised by parents is the reduction in the statutory hours of support they receive. Increasingly, families are reporting having the number of hours of support reduced with no alternative service offered. It is important that the support provided by charities such as the Rainbow Trust should not be seen as a substitute for inadequate statutory support. The Greater Manchester Rainbow Trust team works closely with the Diana nursing team in Salford to provide all-round support to children’s families at home and in hospital. Both services are vital.

Charities such as the Rainbow Trust provide an essential service to families outside a hospice setting, and we must make sure that those community palliative care services are supported. I can tell the Minister that the statistics are very impressive for a small charity. In 2014-15, the Rainbow Trust provided nearly 3,000 hours of sibling support, more than 10,000 hours of home support, 7,700 hours of hospital support and more than 1,000 hours of bereavement support. Members have referred to the importance of bereavement support, which is a key aspect of the issue. Sadly, the Rainbow Trust receives only 3% of the funding needed for all those services from statutory authorities. I hope the Government will recognise the value of community palliative care and support and how it can work alongside hospice care to provide families with the support they need from the moment a diagnosis is made.

Children’s services provide excellent care in an age-appropriate environment, but, as we have heard, young adults tend to have different needs from young children and older adults. As more children with life-shortening conditions live longer—we are all grateful that they do—they are more likely to make the transition into adult care settings. Unless suitable age-appropriate services are offered to help with this transition, young adults may be lost in the system. The hon. Member for Castle Point spoke of the impact on Lucy and the travel she had to do to find services. What will the Minister do to ensure that young adults making the transition to adult palliative care services have the support that they need?

As we have heard in this debate—like everyone else, I want to touch on this—changes in benefit eligibility could also help to ensure that families get the level of support they need. Most people would not think of the importance of the mobility component of the disability living allowance and perhaps not register that the fact that it does not apply to children under three was such an issue, but of course those children need special equipment such as ventilators or the permanent wheelchairs that we have heard about, and families need to transport that equipment. It is a dreadful thought that with precious and limited time for children and families to spend together, the families are unable to get out and are stuck at home because of equipment issues. Will the Minister raise with his colleagues at the Department for Work and Pensions the need to change the eligibility criteria of the DLA mobility component so that the families of children under three with life-shortening conditions can access it? It has been said that it is easy to fix: I hope that he thinks it is.

Many hospices, hospitals, social care providers and charities provide excellent care and support for children with life-limiting conditions and their families. I want to join others in this debate in thanking them for all that they do, but it is clear that more needs to be done to develop a sustainable funding system that can provide a fully integrated service for families at all stages of their child’s illness. The importance of those services for families with a child who has a life-limiting illness cannot be overestimated. We are talking about people who give up their lives to provide support, as Lucy’s mum has done. We are talking about parents who get very little sleep. We should really think that through during carers week. I hope the Minister will assure us that more will be done in future to make sure that every family with a child living with a life-limiting condition can access the support that they need when they need it.