Category Archives: media

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.

The press coverage of the 26th March march is depressingly predictable.

The time that I worked out that the March for the Alternative might be quite big was when I went into the Hobbycraft shop to buy a bit of display board for a placard.
Stafford Hobbycraft is not exactly what you would regard as a hot bed of radical action. People go there for beads and feathers and paint. I mentioned to the lady at the till that I was planning a poster for the protest march, and she surprised me by saying there had been lots of people coming in for ribbons for the protest.
As our small coach hit the motorway it was pretty clear that we were playing tag with dozens of coaches all heading in the same direction, union groups, from Wolverhampton, Pensioners groups, librarians, Sure Start.
The queue for the loos when we stopped at the service station were impossibly full of middle aged women like myself. No point queuing not enough time to avoid holding up the coach. 
Virtually all the people I spoke to on the coach had in common that they had not been on a protest march since the 1980s. One mature lady who worked for a PCT and was waiting to see if she would be transferred to one of the new GP consortiums told me that her 6 year old granddaughter had shamed her into coming onto the march.
Wembley coach park was already packed by the time we got there and in central London the march was well underway, so we assembled our banners and crammed into the tube, with an assortment of strangers all bound in the same direction.  

In central london we joined the end of the march – which steadily became longer and longer. We could see no beginning and no end. We were hoping that we would make it to Hyde Park, but soon it became clear that this was unlikely. There were so many people, and the movement was less of a march and more of a slow shuffle. It was all good natured and patient, and we got into conversation. People helped each other to get snacks out of back packs and take turns on carrying posters. We admired the posters carried by the other people around us. I could see The RCN banners carried by our group, Unison, firefighters, Librarians, University groups, lecturers and students. The union of journalists, various branches of the Labour party. There were lots of people carrying posters in support of the NHS. There were surprising groups like the Writers’ Guild.

A favourite poster was “Drama therapists against the cuts”. We all agreed this is the kind of people doing valuable but little understood work, that would be very likely to suffer now. 
A young girl carried a poster saying “its my birthday, so if you are going to kettle me it better involve cake”.
A small group from Wales sang a-capella. 
A group carried a coffin with the words RIP Adult Social Care.
There were stilt walkers wearing tutus in Unison colours.
The GMB cycled by in amazingly creative cycle floats.
An elderly communist sat with his feet up on one of the benches, handing out leaflets to anyone who wanted to take them.
A young man handed out flyers for a seminar on community organising in Venezuala. 
There was a bit of chanting – but nothing compared to the march I had attended in October around the Conservative party conference. The October protest had involved many people who were politically active,  that understood what was happening, and knew there was a need to challenge it. The people marching on March 26th were not protest veterans. They were quiet people who have gradually seen what the government are doing, and know they are not happy.
Occasionally groups from the Socialist Workers party worked their way through the crowd, and tried to stimulate more noise.
I noticed one small incident involved the photographers. There were photo lenses everywhere. There were little clusters of photographers on every vantage point each looking for a potentially valuable definitive photo of the event. One cluster was clearly getting frustrated that we were not more strident. They chanted for us “You say Cut back, We say fight back”. It was as if they were trying to “teach us” to protest in a way that they might use.
As we passed under each of the bridges we were under close observation from yet more photographers, and by watchful policemen. The photographers were again keen to make things more lively. I could see that there are set roles that the press want protestors to fulfil.
We kept walking – so very slowly – by the time we got to the Houses of parliament it was clear that we would not make it Hyde park. By the time we got to Trafalgar square we needed to peel off and make it back to the coach.  We began to get news of problems in Oxford street as relatives left text messages. But this may as well have been in a different country – it was nothing to do with our experience of the day. Here is another account by Mary Hamilton
Even where trouble occurred it probably hardly justifies the Sunday headlines. Here is an account from the Uncut protests. Another by Dominic Campbell from Fortnum and Masons, and one from Trafalgar square. Here is an account of the hard core protestors have become known as the Black bloc.
On Sunday we hear that Vince Cable is telling us that there won’t be any change of policy in response to a protest. I actually do not believe this. Comforting though it might be for the government to believe that this was “the usual suspects” stirring up trouble, and rejecting the eminently reasonable plans of the coalition, it is pretty clear from the many accounts that are coming out about the day that this was a protest by Middle England. It is reasonable people coming together calmly in an organised fashion to express their concern. If the government wishes to ignore it then that is their choice. There will be a price to pay.
The press also need to consider their role here. The right wing press at present wish to present this overwhelmingly peaceful mass protest as something else. If ordinary people protesting peacefully cannot have their voice heard then this will lead to trouble. People will either be forced to become more radical than they wish to be, or they will take the view that there is no point in engaging with politics at all. That no one will listen.  There is a growing feeling that the press need to be more careful in the way that they report. also here.
I think there is a challenge to the Labour party too. As a Labour party member, an activist still bruised by the experience of the general election, it is easy to feel frustrated that people did not understand at the time when we could have made a difference. Now we have to take on a different role, and assist people to express their wishes effectively. Ed Miliband’s speech at Hyde Park indicates the scale of this challenge.
What happened on the 26th March is that 250,000 to 500,000 people took a day to come to London, and say listen to us. We have a right to be heard. They represent many more who would have liked to come. What this government has not yet grasped is that government must be by consent. They may judge that what they are doing is for the good of the people, but if they cannot carry people with them it is doomed to failure.
The government has chosen to use the media over the course of many months to denigrate the work of millions of public servants. It has chosen to say that the work done by many involves “non jobs”. The people who filled the streets of London beg to differ with this opinion. They know that the services they give and the services they rely on matter.
The government has believed that it can afford to confront the large swath of middle Britain that was represented in this march, and that creating division between private and public sector is beneficial to their cause. This is misguided. The problems that we are facing can only be dealt with by communicating better, and by coming together through a clear understanding of the facts.  We cannot do this without accurate information. We have to be able to trust the press to help us do this. 

Proof that Journalism Not a ‘Feather-bedded’ Profession?

An image sent from Japan, by Alex Thomson of Channel 4 News, showing journalists taking a well-earned rest from their coverage of the aftermath of Japan’s earthquake, tsunami and nuclear problems.

Last night, this tweet appeared : 

okorih arumakan
I want to thank @ crews for delivering water to the evacuators instead of just going for the report. Amazing team.
It is sometimes all too easy to criticise the media and to forget that in order for us, the public, to be given a true portrayal of events and issues, the news gatherers, not least recently, find themselves in precarious positions. 
We have seen remarkable scenes, accompanied by careful and thoughtful words, delivered to our computers, TVs and in the press, from the Middle East, New Zealand and Australia. This is true for most of those sending back film and written reports from Japan.
Channel 4 News are not alone in the excellence of their work. The BBC News output, together with the majority of that of Sky News has at times brought unique angles and surprising points of view to us here in Britain from places beleaguered by natural disasters or the violence of tyrants meted out to citizens embroiled in their struggle for democracy.
One has only to glance at the front pages of the press, however, and to read some of the articles offered to their readers, to glean that the journalism and coverage of such momentous events is not always of such commendable quality. For example:
Cheltenham? – or Japan?

Serious, in – depth journalism?

Rosie Robertson


No Panic, Daily Mail.

Since last Friday, 11th March 2011, the majority of the world ‘s media have rightly focused their attention on the terrible plight of hundreds of thousands of Japanese people. 

Visited at 2.46 p.m. by a very powerful earthquake, magnitude 9.0, the Eastern seaboard of Japan was then almost obliterated by a tsunami which destroyed many towns and villages along the coast, killing an, as yet, indeterminate number of people. 

Representatives of the media descended on the areas affected. From the UK, most of the well-known 24 hour news stations’ anchor men and women as well as countless journalists from the press are there, relaying moving stories , painting vivid pictures of the scenes they are witnessing and enabling readers, listeners and viewers alike to see for themselves the extent of this disaster.

Most of the reporters, thankfully, are producing high-quality, truthful and effective columns and pieces to camera . We are able, through the thoughtful, intelligent and honest accounts from journalists like Channel 4’s Jon Snow and Alex Thompson, to see and hear for ourselves the dignity and sheer tenacity of fellow human beings trying to cope with extreme danger and its aftermath. These journalists are often in dangerous situations themselves.

Now added to earthquake and tsunami, we are watching a nuclear power plant seemingly rapidly running out of control and which may affect the health of many of those lucky enough to survive the earlier events.

Most News outlets have been reporting, and we have been able to see for ourselves, how marvellously stoic and forbearing the Japanese people have been and continue to be. Reporters constantly refer in admiration to the way these people are kind to those in need, thoughtful to strangers and work together to make the best of what most of us would find only in our worst nightmares.

As Channel 4 News’ Alex Thomson says in his blog:

 Over here there is no chaos. No mayhem. There is a nuclear power station with some heating issues. There is a forest fire, a blizzard tonight and coastal obliteration on an unimaginable scale.

But this is Japan. They do not panic. They do not do mayhem. They don’t litter and they don’t loot.

Further examples of the sheer forbearance of the Japanese people can be found here in this video sent by George Alagiah from BBC News: here

Most of the media have been restrained and accurate in their reporting of events in Japan. Some have not. The Daily Mail today, tells us in banner headline on the front page that Japan’s people are ‘in the grip of nuclear panic‘ and includes the word ‘apocalypse‘ in the same headline. 

The purpose of this hyperbole is no doubt to ratchet up the drama of the piece and sell more copies, but what it does do, in actual fact, is a disservice to many thousands of human beings behaving in a way many of the rest of us doubt we would be able to emulate.

How much more effective and honest, then, is this style of front page and headline –

No unwarranted exaggeration, no hype and more importantly, no lack of respect for the victims of this tragedy.

Rosie Robertson