Care of Critically Ill Children

Question

Asked by

To ask His Majesty’s Government what steps they have taken, or propose to take, following the publication in September 2023 of the review they commissioned from the Nuffield Council on Bioethics, Disagreements in the care of critically ill children.

The department is working closely with other organisations to ensure that recommendations are taken forward and oversight is maintained. Together, we have taken steps on several recommendations aimed at improving the experience families and healthcare professionals have of navigating disagreements. NHS England has introduced regional conflict champions and launched resources and conflict management training on e-learning for health. The Ministry of Justice will hold a round table on how less adversarial court models could be used.

I thank the Minister for his reply. This review arose from an amendment to the Health and Care Act 2022, moved by my good friend, the noble Baroness, Lady Finlay, that I helped to draft. What steps have the department taken to establish a task force, as was recommended in the report? Secondly, there are a lot of recommendations in the report—far too many for an Oral Question. Will the Minister meet the noble Baroness, Lady Finlay, and me to review where we have got to with this most necessary look at administrative procedures?

First, I thank my noble friend and the noble Baroness, Lady Finlay, for their work in this field. Of course I will very happily meet to talk about progress. Minister Caulfield has agreed to chair the task force itself, and we have agreed the constituent parties; we are including the Ministry of Justice, the Royal College of Paediatrics and Child Health, the Royal College of Nursing and health qualification providers, which will all take part in the task force.

My Lords, I am grateful for the compliment paid; it was a privilege to be involved. I declare my interests in palliative care. Given that the number of children with life-limiting and life-threatening conditions has more than doubled in the last 20 years, particularly in the nought-to-19 age group and especially in the under-ones, do the Government recognise the importance of early involvement of multiprofessional specialist palliative care teams, which can support families to come to terms with what they have to come to terms with, help other clinicians to understand the families’ perspectives and avoid some of these disputes happening in the first place? Can the Minister tell us how many of the integrated care boards have commissioned specialist palliative care services that work between hospitals, ICUs and wards, out into the community and into hospices?

The noble Baroness is correct: the number of young people with life-limiting conditions has gone up, from about 33,000 around 2001-02 to about 87,000 more recently. A lot of that is, conversely, good news in that we have more and more treatments that can keep these children alive for longer. Clearly, that requires the wraparound-type service that the noble Baroness is talking about. It is the responsibility of the ICBs to provide that; I will provide details of the progress of individual ones when we meet.

My Lords, I emphasise that the task force recommended by Nuffield to oversee its key recommendations needs to get to work urgently. The family-focused research work with parents, including parent carers, about their experiences of shared decision-making with healthcare professionals on care and treatment, is vital, as is the comprehensive information and guidance for parents and staff that is called for across the 16 Nuffield recommendations. What timescales are the Government envisaging for this crucial work to commence and become operational, including guidance to clinical and ethical committees?

My understanding, now that the task force composition has been set up, is that this will be arranged shortly. I completely agree with the noble Baroness that these are important, as well as often heart-wrenching, matters, so urgency is required. As I have said, good progress has been made in a number of areas. Already, the MoJ is setting up a round table on this. The regional conflict managers have been established. We have training courses online so that communication can improve. A lot is being done, and the task force will push that forward further.

My Lords, the Minister will know that there is currently an imbalance between the resources available to the parents and guardians of children involved in end-of-life care—particularly time, money and legal advice—and that of public bodies such as NHS trusts. Compounding that issue is the routine use of secret transparency orders, which prevent scrutiny and oversight of court proceedings, particularly in the family court. Does the Minister agree with me in that respect: that secret justice is no justice at all?

Clearly, the processes on these terrible cases have got to be as transparent as possible. As noble Lords probably know, legal aid is automatically available in all these types of cases to make sure that there is a level playing field. I also think we all believe that there is a case for seeing whether we can use mediation more as, obviously, courts should only ever be a last resort.

My Lords, the Minister has already flagged communication as one of the key areas that comes through in the report, around both palliative care and care more generally. Can the Minister assure us that the task force will have the skills it needs to ensure that that communication can take place with parents from a variety of different backgrounds—educational, with different levels of medical knowledge and in different linguistic and cultural contexts?

Yes, the noble Lord is quite correct. We know that, in many walks of life, so to speak, there are certain sectors of society that do not get the same level of provision and sometimes miss out. We had the debate last week on maternity provision and saw instances in relation to ethnic minorities as well as people with learning difficulties. We need to make sure that all the communications are there and that everyone is armed to provide the right levels of interface and communication in what are some really difficult cases.

My Lords, many families with critically ill children find it very difficult to access treatment because often specialist treatment is only available hundreds of miles away from where they live. That puts tremendous pressure on the family financially. Do the Government intend to do any more to help those families?

Clearly, we would all agree that the families need to be the priority in these terrible cases. What we have tried to do—and I have also done my own research into this—is make available what I call independent funding requests for when there is a new course of treatment which might not be allowed generally by NICE to give opportunities in those instances as well. I will come back to the noble Lord on things such as travel support and other expenses.

My Lords, I declare my interest in and my work with the Teenage Cancer Trust. In connection with the task force, will my noble friend let the House know what input charities that specialise in this kind of work with children and teenagers who, sadly, are in this position and their families will have into the task force? Will he join with me in commending the tremendous work done by this charity and the other charities which specialise in helping children and families going through this traumatic time?

Yes, I am very happy to add my thanks for everything they do in this. It is clear in these circumstances that the more support we can give families, the better. I will speak to Minister Caulfield to make sure that input is properly there because my noble friend is correct that it should be there.