Heather Bellamy spoke with CARE about the importance of the new Palliative Care Bill to make sure everyone has access to quality end of life care.

James Mildred

One in four people in the UK don't get the care and support they need at the end of their life. Problems include poor symptom control, poor communication and even not recognising that people are dying. However a new Palliative Care Bill could change all that and Heather Bellamy spoke with James Mildred, the Media and Communications Officer for CARE, to find out how.

Heather: Care are strongly supporting this Bill, why is that?

James: This Bill is an excellent opportunity to raise awareness about palliative care and the provision of palliative care across our country. We need to be clear that the UK, as far as the provision of palliative care goes, is rightly considered a world leader. In fact just recently a report indicated the UK was still the number one out of all the countries in the world when it comes to providing palliative care, but that doesn't mean that the provision of this holistic approach to end of life care is perfect.

What Baroness Finlay's Bill is seeking to do, is to make palliative care provision more balanced. It would make it available right across our country, to improve the education of health care professionals to make sure they are better equipped to provide quality end of life care and to place a duty upon the Care Commission to review and to look into the provision of palliative care to make sure that high standards are maintained.

CARE are backing this Bill because we believe palliative care is the right approach to looking after people as they approach the end of their life.

Heather: It was quite a shock for me to understand that we even needed a Bill to do this. I thought that was already in place. So why isn't it already in place, what do we currently have at the moment?

James: Just to give a bit of background, my suspicion is that there was probably a good deal of complacency when it came to the provision of palliative care. In 2010 the UK was highlighted as a world leader not just in terms of palliative care, but also our hospice movement as well. The UK has historically been a champion for excellent end of life provision and end of life care in comparison to the rest of the world. So one of the problems is that because we are seen to be such a world leader and because we are rightly judged to be so good at this, there was a real sense in which we didn't really need to do anything as that was already in place; the systems were already there and that everything was absolutely fine.

It should be said that there are many centres right the way across England and many centres do provide excellent palliative care and excellent end of life care. The problem is - and this is something that we're only just beginning to become more aware of - that consistency of quality is not maintained everywhere. There are a range of factors such as location, how old you are, when you need this palliative care and what type of illness that you have; the quality of care that's currently being provided is too dependent on factors like these. These variations needed to be tackled in a new piece of legislation, which Baroness Finlay has brought forward. In the context of the House of Commons, they have just overwhelmingly rejected assisted suicide, saying that is not the way we want to go as a country, so this was the perfect opportunity to suggest a better way and to raise awareness about palliative care.

Heather: Many NHS trusts are already in debt, so should this Bill go through how would improvements be paid for?

James: That's a very complicated question. First of all I would imagine that they would need to work within the current parameters and the recognition that there is this huge amount of debt. It should also be said that much of the improvement can come through the provision of education - that is making sure that more doctors are made aware of how to offer excellent end of life care. One of the great things about Baroness Finlay's Bill is that there is this clause within it that will emphasise the importance of training. That would be working with people who are already working within the NHS; it's working with doctors who are already active and it's equipping them with the skills so that they can provide the quality of end of life care that is needed.

It may be that in the future, if the debt is brought down and if the management of the NHS is improved that there is then funding to inject into providing palliative care.

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Heather: Rob George, the president for the Association for Palliative Medicine of Great Britain and Ireland, has said previously that the problem with hospitals is that they are conveyor belts where performance and outcomes are related to turnover rather than quality of care. So with the continuous calls for assisted suicide, financial problems in the NHS and this sort of turnover mentality, if this Bill didn't pass, would you have concerns about where we could end up in the NHS in relation to our treatment of the dying and most vulnerable?

James: Yes, very much so. People are valuable; they have an inherent dignity from the beginning of life right the way through to the very end and it is unacceptable in this country that there are people across England who do not have access to quality end of life care. It is absolutely vital that everything possible is done to improve the provision of end of life care and it is disappointing, having listened to the debate that the Government have rejected this Bill and said that they will not be taking it forward and they will not be introducing primary legislation i.e. a new piece of legislation to address this issue.

Now that's not the end of the road, that's simply their response at this stage. It might be that they change their mind, but at this stage their reaction is incredibly disappointing.