Access to Palliative Care Bill [HL]

Baroness Jolly Excerpts

2nd reading (Hansard): House of Lords
Friday 14th June 2019 Lords Chamber

[Baroness Jolly (LD)]

My Lords, I too am grateful to the noble Baroness, Lady Finlay, for introducing this Bill. I know that it is an issue close to her heart and one on which she speaks with unparalleled authority. I thank her also for the useful briefing that many of us received last week. She has my complete support.

We have heard compelling arguments from around the House in support of the Bill. One or two contributions have been personal and very moving—including those of my noble friend Lady Hamwee and the noble Baroness, Lady O’Loan, who talked about supporting grieving children. Many on these Benches will remember a friend, a Liberal MP who died just before Christmas in a terrible car accident just over 30 years ago. His wife was left with two small children and suddenly discovered that there was no support for them. She set up a charity which is still running, Penhaligon’s Friends, to do just that: to help, support and counsel grieving children and families. Support is there if you know where to look for it.

The noble Baroness, Lady Hollins, spoke about palliative care for those with learning disability. I should declare an interest in that I am chair of a charity, Home Farm Trust, which provides learning disability services to more than 2,000 adults in England. We built just over two years ago some homes specially designed for older people with learning disability. End of life was factored into the design of the houses. They would look like ordinary domestic residences if you were to walk past them. The aim was to keep the individual in their home until they died. We trained carers and worked with local GPs—it can be done.

I have a couple of questions for the Minister. Can she tell the House who ensures that CCGs commission appropriate palliative care for their region and that there is no postcode lottery? What is the inspection regime for such services?

My contribution to this debate follows meetings with Chris Gard and Connie Yates, the parents of Charlie, who, tragically and in highly public circumstances, died in July 2017. The case was painful for all involved: the parents and the medical professionals working at Great Ormond Street Hospital. Those of us who watched the whole thing play out on the six o’clock news night after night could see the pain not for the parents but the clinicians involved. There had been a breakdown in communication between the parents and medical professionals over an experimental treatment for mitochondrial disease. Great Ormond Street Hospital and Charlie Gard’s parents entered a lengthy and distressing dispute involving a series of court proceedings. The case clearly illustrated problems with current dispute resolution systems.

The court proceedings caused enormous emotional harm and stress to the parents and medical professionals alike. Both, of course, wanted to do what they thought was best for Charlie. Instead of a smooth and efficient process aimed at resolving conflict, we saw huge entrenchment and precious time lost while Charlie’s health deteriorated. Worse, parents and medical professionals were pitted against one another in the full glare of the media. This helped no one.

Since then, Connie and Chris have dedicated themselves to preventing escalation of conflict and protecting the doctor-patient relationship. Although it is not yet before your Lordships’ House, I give notice that I intend to table an amendment for debate in Committee and I beg the leave of the House briefly to outline its purpose—I apologise to the noble Lord, Lord Balfe, who does not like amendments, but I promise him that it is very important.

Broadly, the amendment would do three things. First, it would require the Secretary of State to put in place measures to improve access to mediation where conflict was in prospect. Secondly, it would provide for ethics advice and the means necessary to obtain second opinions swiftly. Thirdly, it would prevent court orders being made to prevent parents seeking treatment where that treatment was not harmful and where another reputable hospital was willing to provide it. In essence, this final provision is about the right to try. It enables parents and medical professionals to look elsewhere together in the best interest of the child.

It is my view, and the consensus view of medical ethics, that if a treatment is not harmful and reputable doctors are willing to provide it, no one should be prevented from seeking it. Here, I pay tribute to Tessa Jowell, a cherished colleague of so many here, who in her final speech in this House advocated for the right to try innovative cancer treatments.

These high-profile cases are not isolated. Many similar, painful disputes are happening right now but we are just not hearing about them, mainly due to reporting restrictions. Such conflicts are bad for doctors, bad for patients, bad for our NHS and bad for the children whose care is under consideration. Our current systems are inadequate to address them and are in desperate need of reform. It is this that my amendment will seek to address. I am grateful to the noble Baroness, Lady Finlay, for the opportunity of doing so in the context of her Bill.

Over the past year, we have been working with NHS medical professionals, world-leading ethicists, mediators and legal experts to formulate a proposal that will help prevent avoidable conflict and ensure that hospitals and parents affected have the help they need. I have been in conversation for some months with the noble Baroness, Lady Finlay, and we agree that her Bill is an appropriate vehicle for what we are trying to achieve. In tabling the amendment, I know that I have considerable support from Peers on all sides of the House and among the wider public. I would be grateful if the Minister agreed to meet me to discuss the amendment.