Access to Palliative Care Bill [HL]

Baroness Walmsley Excerpts

Friday 23rd October 2015 Lords Chamber

[Baroness Walmsley (LD)]

My Lords, I, too, congratulate the noble Baroness, Lady Finlay of Llandaff, on introducing this Private Member’s Bill. Its admirable intention is to ensure that everyone receives the best possible care when they are at their most vulnerable, usually towards the end of life.

There have been a number of reports in recent years highlighting the failings in palliative and end-of- life care. Notable themes have included: serious concerns about staff numbers and competence; poor communication between clinicians and patients, their relatives and carers; the lack of a named senior clinician accountable for end-of-life care; poor access to specialist care out of hours and at weekends; and inadequate care of patients in their own homes. In addition, we have received numerous briefings containing very disappointing statistics.

By the way, I find it very disappointing that some of these highly paid lobbyists think it is adequate to send us their briefings the evening before the debate—I often even get them on the same morning just before I come into the Chamber. It is both irritating and frustrating because they often contain really useful information that is too late to be used. Somebody is paying these people to fail to influence us.

Having got that rant over, to return to the actual statistics, there seems to be an imbalance between the percentage of the medical research budget that is spent on understanding how to improve matters for people at the end of life and the amount their deaths cost the health service. Either we need to spend more on research or spend less by giving more people what they want. As the noble Baroness, Lady Finlay, said, it does not cost more; it costs less to do it properly. Supporting families and carers to care for dying people at home—where they want to be—is far cheaper, even when a package of excellent services is provided, which I am afraid is rare. I was also concerned at the Royal College of Nursing survey, which told us that over 58% of nurses said that patients’ wishes could not be fulfilled because of a lack of time or training.

The Bill seeks to resolve many of these issues and we on these Benches support its principles and call for the wide implementation of the standards and procedures contained in it. However, we would like to discuss whether it is right to enshrine these in primary legislation rather than ensuring that they become the standard best practice everywhere. There is a danger of a legal minefield here but I am sure we will talk about that at later stages.

There is just one item missing: the Health Select Committee’s recommendation that a senior named clinician in each NHS trust is given responsibility for monitoring how end-of-life care is being delivered within their organisation. We might consider laying an amendment to that effect at the next stage of the Bill and I hope that the noble Baroness, Lady Finlay, would support that.

The Bill contains many important elements but I particularly welcome Clause 2(2)(c) and (i) and Clause 3(1)(d), which all refer to support for those who care for the patient. Clause 2(2)(c) refers to support for other health and care workers looking after the patient other than the clinicians. Clause 2(2)(i) refers to a point of contact being available at all times for those looking after patients in their own homes. Clause 3(1)(d) requires health workers to be trained in,

“ways to support families and carers”,

and to involve them in decision-making.

I particularly support those elements of the Bill because, in a Bill which focuses mainly on the medical aspects of palliative care, it would be all too easy to forget that the patient’s well-being and the peace or otherwise of their death depends very much on the ability of those around them to be confident about what they are doing. That confidence only comes from knowing that further support is there when they need it. If that support is not there, families, and even some professionals, will reluctantly agree for patients to be taken to hospital, even when they know that this would not be their preferred place to die. By the way, this would of course also take up time in A&E and/or an acute bed unnecessarily and add to the burdens on the health service when things could have been done better in a different way. Back in the day, people used to die at home—that was the norm. Perhaps we should go back to the future.

There is some very good practice and some very poor practice. I have a friend whose mother and mother-in-law had totally different experiences at the end of life. Her mother-in-law was diagnosed with terminal cancer some years ago. She was immediately given the support of a Macmillan nurse, who identified her wishes and helped the family put them in place. She wanted to die in her own home and, because everything was planned carefully ahead and they were fully supported, this was achieved. In stark contrast, her own mother and the family had a terrible experience, which I mentioned in my speech yesterday in the debate in the name of the noble Lord, Lord Farmer, in the Moses Room. The patient had multiple conditions, the course of which, although not as simple to predict as a single disease, should have been possible to plan for. However, there was no forward planning and care was reactive—slowly. Bureaucracy, inflexibility, lack of communication, slowness of services to respond, inadequate use of modern technology and complete lack of support for the family characterised their experience. It was a complete nightmare, which I would not wish on anyone else, and I am grateful to my friend for bringing these shortcomings to the attention of the House through me.

I wish the noble Baroness well with her campaign to highlight the shortcomings in our provision of these important services and look forward to further debates on the Bill in due course.