Access to Palliative Care Bill [HL]

Lord Cavendish of Furness Excerpts

Friday 23rd October 2015 Lords Chamber

[Lord Cavendish of Furness (Con)]

My Lords, it is a pleasure to follow the noble Lord, Lord Warner. I have always listened to him with great respect and, however he describes the seat he is in now in this House, I will continue to do so. I wish him well. However, I regret that, along with the noble Lord, Lord Davies, he chooses to keep alive the question of the Assisted Dying Bill following the rather conclusive vote in the other place recently.

I can only guess at the amount of work that goes into drafting a Bill such as this. I pay tribute to the noble Baroness, Lady Finlay, not just for this Bill but for all the pioneering work that she does for palliative care in the widest sense. It speaks volumes for the cause as well as the high regard in which the noble Baroness is held that so many of us are mustered in your Lordships’ House this Friday afternoon.

In the time available to me, I want to make three points: one general and two specific. I need first to declare an interest. Referring noble Lords to the register of interests, I merely say that whatever small value I might add to the debate stems from a very close involvement with St Mary’s Hospice in south Cumbria since its inception some 25 years ago. What a long way we have come since then, but there are still pockets of ignorance. I still occasionally hear a doctor saying that palliative care is no more than common sense—just give the patient a jab of morphine. I still hear people in care homes claiming that they can do the job as well as hospices. But death, dying, loss, grief and bereavement have been largely demystified in the last 10 years or so. They are discussed much more openly than they used to be. I look forward to what has been described as “the cultural aversion to talking about death” being entirely a thing of the past, a point which was eloquently made in the powerful contribution of the noble Lord, Lord Crisp. The culture is changing and changing for the better, even if we have a long way to go.

Earlier this month I participated in a conference organised by the Cumbrian hospices, with which the right reverend Prelate the Bishop of Carlisle is associated. In the morning we heard from, among others, Professor Allan Kellehear. In a compelling talk delivered with blunt Australian succinctness, he emphasised that responsibility for all end-of-life issues lay with everyone—with all of us. He called for leadership in the community to achieve these goals.

In this connection I think it is worth my saying that when we started at St Mary’s all those years ago, I felt that we should never look for, or accept, more than the cost of the clinical costs which we were incurring, which was then, and remains, I think, about 30% of the whole. Of course, it was a very long haul, with great financial crises along the way and some quite difficult moments, but the result was real ownership by the community. Huge benefits flowed from that ownership. It attracts money, as the noble Lord, Lord Howard, mentioned, and it attracts volunteers. The staff develop a sense of accountability to their local community and feel proud and happy to have that. It gives the trustees confidence that they are no longer alone in carrying the financial burden. In a very real sense ownership is shared. My contention is that this sense of community ownership adds force to the aims of this Bill. A group of local worthies asking for something is one thing, a united community demanding it is quite another, and by magnitudes more powerful.

The afternoon session of the conference was dedicated to motor neurone disease. Three MND spouses spoke to us with huge courage and answered our questions. Two of the suffering partners were living and one had recently died. We heard moving and harrowing tales of living with this awful condition. We heard that the NHS provision was excellent but we also heard, with great sadness, that the agency provision, as reported, was absolutely shocking, with untrained, underpaid, overworked and unreliable staff; and always in a great hurry.

I subsequently spoke to the husband of a wonderful and inspiring neighbour who suffers from MND. He confirmed that their experience with the local NHS was excellent but that the care provided by the agency carers was deplorable. I hope and believe that this experience is not universal but I wonder whether such companies will fall under the provisions of this Bill. Perhaps my noble friend the Minister will be able to comment when he responds on the position of agency staff in general and whether or not it applies to the Bill before us. The same gentleman also told me that the generous provision of equipment was withheld from his wife on the grounds that she was over 65 when diagnosed. If that is correct, it seems very unfair and arbitrary. Again, I wonder if my noble friend could help with this. I have not given him any notice of this question but I would be very grateful if he could write to me.

To my mind, the advances in palliative care and the progress of the hospice movement in my lifetime rank among the great achievements of this country. That there is powerful demand for the best palliative care to be universally available is not unreasonable. The Bill represents another milestone in the long march towards that goal. It deserves our wholehearted support.

Hospices and Palliative Care Services

Lord Cavendish of Furness Excerpts

Wednesday 15th December 2010 Lords Chamber

[Lord Cavendish of Furness]

My Lords, with her formidable experience and knowledge, it is always humbling to follow the noble Baroness, Lady Finlay. I join other noble Lords in thanking most warmly the noble Viscount, Lord Bridgeman, for introducing this debate so ably.

I have to declare an interest: some 20 years ago, I helped to found St Mary’s Hospice in Ulverston in Cumbria. It is at the other end of Cumbria from the noble Lord, Lord Judd; Cumbria is enormous. I retain a connection, although I retired as chairman last year.

I should like to make two points. As I understand it, the independent report on end-of-life care by Thomas Hughes-Hallett has made an interim recommendation to the Government to the effect that hospice-at-home services should be the chief beneficiaries of whatever money may be available in future. I do not quarrel with that, nor do I want to second-guess the final report. However, I register two caveats. First, a significant minority of terminally ill patients want to die in a hospice or at least do not want to die at home. The other caveat is that a hospice building has uses beyond that of being where people are cared for as they approach death. It is a point of contact for members of the local community and provides a venue for day care, which is very important, bereavement counselling and much else besides. Perhaps most important of all, it has become the hub of expertise, especially where a hospice such as ours develops a speciality. In my case, because of the high incidence of mesothelioma in Barrow-in-Furness, which is the tragic legacy of asbestos in the shipbuilding industry, St Mary’s has become something of an international leader in this field. Hospices innovate, as does palliative care in general. It would be dangerous to ignore the strength that an institution derives from having a physical core, albeit modest, which provides the springboard for training and innovation.

The second point is that I believe that the hospice movement has stumbled on a formula that could be far more widely applied. With very little modification, it could do very much more in the fields of heart disease and end-stage respiratory illness. It could relieve much fear and distress among patients suffering from these complaints. It would also remove significant financial burdens from the NHS. The non-cancer element of hospice care averages, I think, only 10 per cent; at St Mary’s we have a slightly larger percentage and my contention is that nationally it should be significantly higher still.

The ratio of funding between the state and our own fundraising efforts results in our having to find rather more than 70 per cent of what we spend. The reason why we were able throughout my time to raise such prodigious sums in a not very well-off area was that we successfully persuaded local people that the hospice belonged to them. In effect, the state meets the clinical costs—about 30 per cent—and we find the rest. This means that our care is essentially needs-led. I agree with my noble friend Lord Patten that, in this rabidly secular age, spiritual support has an important place and is much needed. This model, with its built-in synergy between public and private providers, can and should in my view form the basis on which new and enduring partnerships can build. It is indeed, as has been said, the big society at its best.