26 June 2011

End of life care: some straws in the wind.

It is clear that we are not doing end of life care well.
We have powerful medicines and wonderful delicate surgery which can do things that would have been seen as impossible even 10 years ago. These mean that the conditions which people were dying of just a few years back are treatable. People survive, and that often means surviving in a very frail and dependant state for many years.
During John Major’s government we saw a big shift. We had already begun to see the extending of the “twilight years” and at that point many people were ending up in Geriatric wards in hospitals. It was seen as a problem then, and the cost was crippling the NHS.  The solution put forward by John Major’s government was the community care act which encouraged the creation of private nursing homes, and meant that the burden of costs passed to the individual, with the safety net of means tested payments from Social Care once a life time of savings had gone.
The fact that many people were likely to lose their life savings to pay for care was quickly recognised by the Labour Party and it was one of the issues on which they stood in 1997.
Resolving the question of how we pay for care has proved very difficult. A series of commissions and reports all recommended that we needed major surgery, but offered sticking plaster options. In the face of resistance to anything that looked as if we needed to spend more on the issue we got the sticking plaster. My family was one of the many casualties of this period, with care costs for my mother close to the £100,000 mark.
I recognised that this was not acceptable and spent five years working quietly with my MP to find a fairer solution. I think it is partly because of his quietly insistent work on this that we got the major rolling consultation led by Caring Choices, followed by a well publicised green paper.  We also held a seminal conference here at Stafford University which the MP organised to answer some of my questions. This brought together all the key players from Whitehall, the insurance industry, Health and social care, the voluntary sector and many representatives from our community.
It was not until the white paper of 2010 that we finally had a brave solution offered. For a brief period there was real hope offered on this, with the health spokesmen from the three main parties working secretly together to talk about the solutions. Then the lure of electoral advantage was seized by the Conservative party who broke away from the talks and got the tabloid press into a frenzy with the now infamous “death tax” posters.
My husband’s humorous suggestion that it is all my fault, that I brought down the Labour Government, is I think going a little too far, but I accept that it has at least a few grains of truth in it! Sorry!   
So where are we now?
The Stafford Hospital inquiry has show us that a hospital, especially a busy hospital with chronic staffing shortages and the wrong kind of ward layout, may not be the most restful or dignified place for people to come to the end of their life. The very effective media management methods used by the Stafford pressure group have been successful in forcing many people who would rather not have seen, to face the uncomfortable fact that some of what is on offer as elderly care is simply not good enough.  The media and the press are also completely tied in to this issue. People throughout the country are now being vocal about failures of care in a way that would never have happened before Stafford. The extent to which the Conservative party have aligned themselves with this sentiment means that failures in care under their leadership will not be tolerated. It is now a political imperative to find good solutions.
From the point of view of my interest in the press and elderly care, I am wondering about the press and media stories that will affect the difficult decisions ahead, and wondering if the media can this time play a positive role in allowing all the arguments to be clearly heard.
So how can we do elderly care better at a time of austerity?   Here are a few of the straws in the wind.
The Alzheimer’s society recommendations.
There will be a lot of anxiety that the decisions taken by this government about end of life care . Many people will believe – fairly or unfairly – that cost will be the deciding factor.
It is worth putting a counter argument. The Alzheimers society report "Counting the Cost" showed clearly that people are ending up in hospitals because of failures of primary care, and they are staying too long because good social care options for re-enabling after a period of acute illness do not really exist.
The prolonged hospital stays are a huge and potentially avoidable expense for the NHS. Confused but mobile patients can completely wreck the running of otherwise viable wards as we have seen at the Stafford Inquiry, so the cost and efficiency arguments matter, but long hospital stays for confused elderly patients is something that can be distressing, undignified, at times life threatening, and can destroy future quality of life.
It is a priority to get people out of hospitals if they do not need to be there. We need to recognise that. We need to create the right pathways.
Making the NHS cost effective  
Cost cutting in the NHS and the move towards the GP commissioning is aimed to concentrate minds and stop people passing the problem from one budget to another. It will be in the financial interests of commissioners to ensure that no one ends up in hospital because of lack of support from primary care, and that people do not stay in hospital too long because of lack of good options for helping people return home or to more appropriate care settings.  These priorities fit with the Alzheimers report and also with the Alberti report on Stafford Hospital.
The increased focus on quality.
The NHS has been talking about quality and the ways to improve it and measure it for at least the last decade. Many improvements have been made. The Stafford Inquiry has spent a lot of time looking at this issue, and has ensured that quality will remain high up on everyone’s agenda. This will happen not least because the Stafford Hospital case, coupled with the ubiquitous presence of mobile phones has now made speaking up against poor care fashionable. The media now notices these issues in ways which it never did in the past.  
We need to start asking the deeper questions. What do we actually mean by quality for end of life care. What is a good death and how can we create the conditions for more people to experience this.
Dilnot comes at the end of a decade of commissions and reports on the vexed question of how to pay for Care costs. It will have taken as a starting point the Labour White Paper on social care from 2010. Dilnot will report very soon.  All the indications are that this is going to be very stormy 
It sounds as if there is a preference from some parts of the cabinet for an insurance based care funding solution. This is bad news. It is what John Major tried. It did not work, and that is why by 2009 people were being offered an insurance package by only one remaining insurance company that still thought there was any point in this at a cost of £80,000.
For those who are very rich, too rich to worry about care costs, there is clearly an interest in voluntary insurance packages to fund care risk. For everyone else the best option is for universal risk sharing.  The “Death tax” is only one way of doing this – there are many possibilities.  We need to understand the options better. The media have a major part to play in this.

Southern Cross
The problems with Southern Cross have helped focus our minds. This is the kind of company set up in response to John Major’s Community Care legislation, and fostered under New Labour. Many people feel a great distaste at the idea that this business which is now in real financial trouble, and threatens the security of many very frail elderly people, has been the source of major profits to big business through maximising the profits from property speculation.
There is a need to do things differently. People do not like the sense that their misfortune is the source of profit for other individuals. We should remember Southern Cross and start thinking seriously about community ownership of the care of our elderly.  
The media and local press could be playing an important part in helping promote discussion on these issues.
Steve Field Future Forum.
Steve field has completed his listening exercise for the NHS “pause”.  One of the roles for competition, choice, and other providers that he identified is for better options for end of life care.
Communities have a clear interest in understanding this. If we come together there is an option for community led and community owned solutions. If we do not there will be plenty of big businesses willing to come in and give us “choice” of Southern Cross mark 2!

It is the Job of NICE to lay out guidelines for Cost effective options for the NHS and care systems. They will research and issue guidelines on ways of delivering the best quality we can achieve at the price we are willing or able to pay. They are now beginning a consultation on end of life care which will end in November.  It would be very useful of the Media can share with us the opinions that are feeding into this consultation. The results of it may be rather important.
Terry Pratchett
Terry Pratchett matters. He is doing a wonderful job of presenting the dilemmas that face Alzheimer’s sufferers. He wants us to talk about the right to die. He has made this an issue that far more people have thought about.
A conversation about better ways to die
There are many taboos in this country. One of them is about dying. We have shied away from this. When I was a child many people died at home. They died quietly and peacefully with their family around them and a little reassurance from visiting doctors and nurses.  Perhaps we were less afraid of it. Now for all sorts of reasons death has become a “medical issue”. The incredibly frail elderly people that we are now seeing often need experts working in pairs to move them, and we are frequently looking at families where the person dying is in their 90s and the person caring is in their 70s.
Many people believe that they need the full range of feeding tubes, drips, help with breathing, and pain relief in order to die a good death. This need not be the case. In the case of my own mother, after having seen three distressing deaths with a lot of medical intervention, and after having read up on some of the more modern approaches to death, I chose minimal intervention. In her case at least it was a very peaceful and positive way to die.
We have lost the art of the good death. Maybe it is now time for the media can tackle this taboo and help us to understand the options more fully.

Over the next few weeks I predict an outbreak of discussion on Death Taxes. Death and Taxes are the two certainties in life. Let us hope that we use this opportunity to ensure we all have the comfort of knowing we are creating the conditions for ourselves and all the people we care for to die well.