Heather Bellamy spoke with Professor Rob George about the current failings in palliative care in England and his ideas for creating excellent palliative care for everyone.

Rob George

The UK remains the world leader when it comes to the quality of Palliative Care available, according to a recent report. However as the report notes, there remains considerable room for improvement and Baroness Finley's Access to Palliative Care Bill, currently going through parliament, addresses several key areas for concern and will markedly improve palliative care in England. To find out more about palliative care in the UK and the importance of this Bill Heather Bellamy spoke with Professor Rob George, the Medical Director for St. Christopher's Hospice, Professor of Palliative Care at King's College London, Consultant Palliative Care at Guy and St. Thomas' Trust and President for the Association for Palliative Medicine of Great Britain and Ireland.

Heather: It's reassuring that the quality of palliative care is comparatively so good in the UK. What are we doing well in?

Rob: I think that we're doing well in recognising that it's important and the infrastructure with some of the guidelines that are available; essentially the potential is there to provide good care. Where there are pockets of the best care, it is the best in the world.

The problem is that this remains a postcode lottery. There are no requirements for any commissioners or service providers to provide palliative care at a minimum standard. So whilst compared with the rest of the world, we might be at the front, in terms of the overall quality we provide, when it comes down to the bedside, when it comes down to you or I, or our parents, whether or not we get good care is going to depend upon what's going on in our locality. Local commissioners just may not prioritise care of the dying and I think that that is an entitlement for everybody, because we all die.

Heather: Absolutely. It's really shocking when you say there's no minimum standard of care. Actually the report concluded that in nearly half the hospitals, the dying are at risk of harm, or unnecessary suffering. It's shocking that anyone is at 'risk of harm' in the UK when you're dying and in your most venerable state. How do you feel when you know people are suffering in that way?

Rob: It's very distressing for somebody like myself who is an expert, because we know that there is so much more that can be done. As far as I am concerned, I think a never event should be that nobody ever dies in distress, or discomfort unnecessarily, because they haven't had access to specialist care.

Heather: So how important is this Bill to ensure improvement happens?

Rob: It certainly starts a process and sets an obligation for commissioners to provide a minimum standard of care.

The other thing of course is that experts like myself do not need to see everybody who's dying, but what we do need to do is to make sure that education, support and training is available to everybody who has regular contact with dying people. It is actually difficult to look after dying people, because we're all human, particularly if you're not trained in this. It can be a distressing experience looking after somebody if you don't know how to deal with their symptoms and if you don't know how to deal with the psychological and spiritual distress that they have in a dying process.

Heather: With the best will in the world, if this Bill goes through, is there enough money to implement those changes; to have enough staff and train them?

Rob: Whether or not we have enough money, it's about prioritising the money we have and using it well. All of us die, so every single one of us will experience this and therefore it seems to me that this has to be a priority in providing decent care and support. If that requires the diversion of money from futile treatments, or from unnecessary interventions, or tests, in order to make sure care is adequate, then that should happen.

In addition to that there needs to be the training and support for the medical staff, so that they know how quickly and effectively they can intervene, or make a difference to a patient. Then linked to that is a key thing and that is family. Family need to be available, but actually they want to be available and quite often family and carers at a bedside feel disempowered because they're not being helped to do things to support the care that's going on.

Having different approaches to care is important and not just saying we need more nurses, or we need more this or more that. We need to think about how we approach this problem. We need to involve families, we need to involve communities when people are at home, we need to involve faith groups and we need to have what's called 'compassionate communities', because ultimately, dying is as much a social event as it is a physical event. It has to be in the right context; it has to be with the right cultural priorities and it needs to be involving people who matter to that individual, because a person dies from a life and not just from a disease.

If through legislation it is recognised in this country that care of the dying is as important and should be as much of a priority as care of the new-born, then we will have moved things forward significantly. This Bill has the potential to do that. I want a future where people need never die in severe distress, or discomfort for lack of access to the right specialised palliative care; that is a basic right for the citizens of this country.