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Access to Palliative Care and Treatment of Children Bill [HL] - Second Reading

Part of the debate – in the House of Lords at 3:14 pm on 7th February 2020.

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Photo of Baroness Thornton Baroness Thornton Shadow Spokesperson (Health) 3:14 pm, 7th February 2020

My Lords, I congratulate the noble Baroness, Lady Finlay, on getting her Bill here and being persistent, which counts for a great deal in this House. I welcome all the contributions today, particularly that of the noble Lord, Lord Brownlow. I echo other noble Lords in saying I am certain that he will make a great and valuable contribution to your Lordships’ House. I also thank organisations for their briefings. Like many speakers today, I have had experience of dealing with and accessing palliative care for loved ones, in my case at least twice in the last 10 years.

It is important to focus, as this Bill does, on addressing shortcomings in end-of-life care provision by ensuring that all NHS commissioners make arrangements for general and specialist palliative care services to be available to all those who need them. At this point I probably need to draw the House’s attention to my entry in the register of interests as a member of a clinical commissioning group. We all know that there are examples of excellent end-of-life care being provided throughout the UK, but as other noble Lords have said, particularly my noble friend Lord Hunt, there is considerable and unacceptable variation between locations relating to whether people are being cared for in hospital or in the community and their medical condition. The Bill would help in addressing those variations and ensure that high-quality generalist and specialist palliative care is available to all who needed it, as it should be.

We on these Benches welcome the Bill’s ambition to place hospice provision on an equitable footing with all other healthcare services provided in a local area. We are pleased to see the Bill specifically mention hospice access to pharmaceutical services. Pain and other uncontrolled symptoms are frequently cited as the main concern about death and dying. We support the Bill’s provisions that would ensure that clinicians providing general palliative care had access to specialist palliative care advice at all times.

I am grateful for the briefing that I received from Together for Short Lives. I commend it for its wonderful and hard work in this area. I draw particular attention to the fact that it says the growing shortage of skilled children’s palliative care doctors and nurses across England has now reached crisis point so that even the good services are in jeopardy, which is leading to seriously ill children and their families missing out on crucial out-of-hours care and vital short respite breaks. It says that there are too few skilled children’s nurses to fill vacant posts in children’s hospices, with more than half of children’s hospices citing an overall lack of children’s nurses as a significant factor in the vacancy rates they are experiencing. I feel bound to ask the Minister why this clearly-needed service that should be available across the country is not being driven by the NHS and the plans outlined in the long-term plan—or is it going to be? Is it possible to take urgent action to address both adult and children’s palliative care workforce issues in the NHS people plan?

It is of course Clause 2 that raises the most concern for us, as it did for many noble Lords. I was very struck by the briefings that I received from both the BMA and Together for Short Lives expressing their concerns. I will say that everyone will welcome the Bill’s important ambition to support the resolution of differences of opinion through mediation as a non-adversarial approach, although I think the remarks by the noble Lord, Lord Balfe, were pertinent. We would welcome an accompanying commitment from the Government to properly resource mediation and ensure that it is readily accessible across the NHS, because no one wants to end up in court.

The concerns centre on the proposal in Clause 2(4) to change the way that courts consider cases when there are differences of opinion as to what treatment is in a child’s best interests. I absolutely understand how painful and difficult these issues are. The BMA says about Clause 2(4):

“We believe the current approach is preferable and does not need changing. The current approach ensures the court’s starting point and focus is on a child or young person’s best interests, taking into account all relevant factors, including the views of parents.”

Following the remarks of the noble Baroness, Lady Brinton, I think that simply has to be right.

If the current approach is to be changed, we will need to take account of a number of issues. The courts would surely have to consider the views of all those who have a parental responsibility for a child. What happens when people who hold parental responsibilities disagree on what is in the child’s best interests? How would the situation of foster carers holding parental responsibility alongside birth parents be dealt with? That may be fraught. I can see that there might be increased conflict if one person’s parental responsibility is deemed to hold more weight than others. The way the Bill is drafted could lead to one parent’s views being discounted in favour of those of another. The noble Baroness, Lady Brinton, also mentioned the Gillick competence of a 16 or 17 year-old, who may very well wish to cease medical treatment when their parents want to continue it.

Finally, what weighed heavily with me is what Together for Short Lives had to say about this:

“We have concerns that the level of proof required by this Bill to ‘clearly establish’ that ‘any medical treatment proposals put forward by any person holding parental responsibility for the child’ are not actually in a child or young person’s best interests would be too high. Parents’ views and wishes about the treatment of their children are extremely important and, where possible, should always be sought and discussed.

Where disagreements cannot be resolved and the court is approached for a view, courts frequently support parental decisions that are within the range of what could be considered in the best interests of a child. Where disagreements reach the courts, parents need to be able to access support to ensure their views and wishes are adequately represented. Whilst it is entirely understandable for parents to want to prolong their child’s life for as long as possible, we believe the court has a responsibility to ensure that children with life-limiting illnesses are not exposed to unacceptable, painful, unproven, or suboptimal treatments.

We believe that there is a greater risk of children and young people being exposed to these kinds of treatments if this new approach is adopted.”

That is very serious and has to be weighed in the balance when considering this clause.

We on these Benches offer our support to this Bill. We hope that the problems in Clause 2(4) can be resolved and look forward to the Minister’s remarks.