Hospices (Children and Young People)

Jane Ellison Excerpts

Wednesday 18th December 2013 Westminster Hall

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

I congratulate hon. Members on an excellent debate. I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on securing it, and on speaking, not for the first time, with great passion and knowledge on this subject. The debate rather gives the lie to the lazy cliché that MPs bring no real-life experience to the House. It has been enormously informed by the life experience of a number of Members, and I congratulate everyone who has taken part. I will do my best to respond to the various questions put to me, but if by chance time defeats me, I undertake to write to colleagues. The Minister of State, Department of Health, my hon. Friend the Member for North Norfolk (Norman Lamb), is sorry that he cannot respond to this debate. As Members will have observed a few minutes ago on the Annunciator, he is otherwise engaged in the main Chamber.

Hospice care and palliative care for children and young people is an important and sensitive subject. From what the shadow Minister said, I can see that there is a good degree of cross-party consensus on the need to take the subject seriously and to sustain the way we serve the sector. The coalition placed great emphasis on palliative care in the coalition agreement, which included several specific commitments, such as a commitment to placing hospice funding on a more transparent and sustainable footing—that has been the subject of many comments today—and to introducing a new per-patient funding system for all hospices and providers of palliative care, so that the most gravely ill children and adults can receive care in the setting of their choice.

We have committed £10 million a year to support children’s hospices, as well as an additional £7 million in this financial year to support capital projects. In 2012, that allocation increased by over £700,000 to support new providers entering the sector, and we are keen to continue that substantial level of support now that responsibility has transferred to NHS England. We recognise the need for change in how children’s hospices are commissioned and funded. While a new funding system will be introduced in 2015, and while we have provided money to support hospices until then, we know that more needs to be done to support effective local commissioning. That, rightly, has been the focus of many of the speeches today.

Many hospices do not have as effective a relationship with their local commissioners as they might like, and funding from health commissioners is a relatively low proportion of the incomes of most children’s hospices and hospice-at-home providers. That is not universal, however. There are examples of local good practice where primary care trusts, formerly, and clinical commissioning groups, currently, have entered into funding arrangements with their local children’s hospice. My hon. Friend the Member for Salisbury (John Glen) has not returned from the main Chamber, but he spoke about the arrangements in his area for Naomi House, which has a per patient, per night tariff that has been arranged with the local CCG in Wiltshire.

We want the principle of CCGs supporting children’s hospices to be embraced widely across England. Monitor and NHS England are looking to include the arrangement between Wiltshire CCG and Naomi House in the national tariff document as a case study of good commissioning arrangements. Obviously, it is important that any nationally mandated or recommended tariff is based on a robust body of national evidence and provides clarity for commissioners on the services provided. I know that the working group has discussed the Naomi House example.

The charitable sector and the excellent fundraising work it does will always have a role. It has made an absolutely magnificent achievement over many years in all parts of the country; we have heard about that today. We are keen to see more effective and sustainable commissioning for hospices. We want commissioners to assume a more active role with their local providers, and we are keen to engage with the sector to see how we can support that. A lot of work is going on to develop that new model.

As has been referred to, the independent palliative care funding review, which reported in 2011, found that the absence of a clear funding model, or even a proper understanding of the costs of palliative care, was a major impediment to developing that care. The right hon. Member for Rother Valley (Mr Barron) mentioned the “stunning” absence of good data on the costs of palliative care, and the first step in developing a new funding system had to be improving the evidence base. We established eight pilots to collect a range of data and to test the review’s recommendations. The pilots—seven for adult palliative care, and one for children’s palliative care—are running for two years, and will provide the evidence to underpin decisions on how best to transfer to a fair and transparent funding system, which we intend to introduce in the 2015-16 financial year.

Hon. Members challenged us on the implementation plan and its timings. As part of the development of the tariff, there will be a plan for testing and implementation. Once we have clarity on the funding model, we will continue to ensure that the stakeholders are involved. Many of the hospices and their umbrella groups are closely involved in that work, and they will continue to engage in it.

I have heard the mood of the House on consultation. Although this is an NHS England lead, and I cannot commit it to carrying out a consultation, I can strongly encourage it and relay the mood of the House. The details of the tariff are still being worked on, but given that the new system will come into effect in 2015-16 and the sector needs to be able to plan ahead, we hope that that will happen in autumn 2014. That should be feasible, but I cannot commit to it. The sector is closely involved in that work and will be closely involved in the timing arrangements as well. It is key to say that we will not let this issue drift. The hospices are involved in the data collection and the discussion, and are key to the NHS England working group. The Government have made a commitment on that; we are conscious of that, and Members are right to push us on it.

NHS England is leading the work, and more than 80 organisations are involved. Barbara Gelb, the chief executive of Together for Short Lives, is a member of the Secretary of State’s children and young people’s health outcomes forum, so there is good read-across there. I emphasise how closely the sector is involved in the work, and how important it is to ensure that it supports the new funding model, which will be simple and non-bureaucratic—all the things that Members have alluded to today.

Having that clear, quality-assured information on the real costs of providing complex, costly care to a relatively small number of children will make a significant difference to commissioners. That has been emphasised by a number of Members. Concerns have been focused on that transitional period and the commissioning guidelines. The Department will consider in the coming months how we might further support that local understanding and preparedness among not only CCGs, but local authorities, as commissioners of social care.

[Sir Paul Beresford]

rose—

[Jane Ellison]

I will struggle to respond to the points made in the debate if I give way. I hope my hon. Friend will forgive me, but I am happy to pick up points after the debate.

We realise that health and wellbeing boards need to be involved, and that sits firmly in my area of public health. I will think about how we can take that forward and publicise that more.

The transitional period and the challenge for older children and young adults was referred to a great many times, and has given much food for thought. The Department of Health has given section 64 funding to Together for Short Lives to support development and research around appropriate pathways and the transition to adulthood. The National Institute for Health and Care Excellence has been commissioned by the Department to develop guidelines around that transition. A number of areas of Government policy come back to that same challenge of how we deal with transition, and stop there being a cliff edge when a child becomes an adult. We all recognise that in real life that is not a cliff edge. In other policy areas, in other Departments, people are looking closely to see where we can get that right.

The Government have made short breaks a priority, and have put money, albeit not ring-fenced, into local authorities. We have introduced the short breaks duty, which requires all local authorities to provide a range of short break services for disabled children, young people and their families. A statement has to be developed in consultation with families and published. That is one thing that local authorities can be judged against. My hon. Friend the Member for Mid Dorset and North Poole (Annette Brooke)spoke about Julia’s House, which is an interesting case in that regard. We will ensure that that is brought to the attention of the national clinical director. I will bring all the points that have been made in this debate to their attention.

In the final few seconds that I have left, I wish to put on record my thanks to all the volunteers and staff who work in this sector. I know that in the coming weeks, which will be a difficult time of year for families with a loved one who is ill, they will bring both comfort and joy to the people they care for, and for that we thank them very deeply.