How do we get dignity in care?

I am just listening to Michael Parkinson on You and Yours with regard to Dignity in Care.

This is an issue I have been deeply interested in for many years, partly as a result of my own experience coping with my mother’s 8 years of dementia.

There are many real concerns about how we do deliver care.

It is not surprising that we are getting a number of individual stories being told on the programme of times when things have gone wrong.
These are depressing stories.

The media are keen to hear these horror stories, and of course we need to hear them.

What I am hoping is that the programme will go on to look at what it is that we need to do to turn this around. I sent an audioboo though to you and yours to try and address the issues. Not sure if they will include any of this.

Listen!

The issues that we are dealing with now are the tip of the iceberg. As the demographic change bites we will find more and more problems unless as a society we get to grips with how we are going to fund the care that we need and how we are going to change our own attitudes.

The programme is now looking at a care home which is taking a particularly imaginative response to the care of dementia patients. It can be good. At its best dementia can bring with it a simplicity and an opportunity to reach out to people in a very simple way. Making this happen means giving those people who are delivering care proper respect. They need to know that their job is valuable and valued.

They also need time, and for their work to be something integral to the community, rather than a kind of warehousing for people that we no longer want.

One of the key resources that we have that could make this work is our own older people who are still well. We should be thinking of paying older people to go into care homes and hospitals in order to give support for patients and residents.

A lady is just describing a really well designed care facility in Welwyn where people with dementia were able to live independently – within a small purpose built complex, which allowed people to be safe, but have company and support when they needed it.

This can be done – but acheiving this means that we as individuals need to be going out in our communities, engaging with the local authorities and planning process, and making sure it happens.

We are approaching the end of the programme. The F word – Funding has been mentioned twice.
I am afraid that this programme, like so many other programmes on this subject has dodged the vitally important issue of how we as a society are going fund care. Not a single word about the Green paper proposals which do fully cover the funfing options.

The Alzhiemers champion has just raised the issue of agencies generating large profits from the provision of care, and indicated the need for proper regulation of charging.

She has also raised the question of how we should be able to measure quality in homes. and regulate the provision of domiciliary care. The care quality commission is looking at this.

The programme is over. Maybe we are still at the point of making sure that people are aware of how big the problems are.

Such a pity that we keep going over the same old ground. Time to move towards the solutions.

How can we hear when the people speak?

For all of us who want an election that is fought on the issues, the challenge of making this happen can at times seem daunting.

I have seen enough on the doorsteps at Crewe, a local by-election, and what came out of the polling boxes in June to show me what happens when we are dealing with an electorate that does not feel that it has an effective means of making its voice heard, is fundamentally ill-informed and is therefore open to manipulation by what appears to my lay persons eyes to be cynically orchestrated press campaigns.

One of the things that I find quite alarming at present is the extent of the divide that is opening up between people who are informed and people who are not. We have more opportunity than ever before to find out the facts and share opinions. We also have endless opportunities to express our own opinions. The sheer volume of words out there in itself becomes a part of the problem. 

A lot of people have identified that the internet and social media have a huge potential for bringing about the kind of empowerment that many people see as necessary, but we are not there yet. 

Because these questions have been on my mind for several years my attention was caught by an item on @R4today regarding Deliberative Democracy http://cdd.stanford.edu/
A conference is being held in London involving James Fishkin who is author of “When the people speak” http://cdd.stanford.edu/research/whenthepeoplespeak/ this is being pulled together by @power_2010 http://www.opendemocracy.net/ourkingdom/guy-aitchison/uk-citizens-gather-to-disuss-how-to-reform-system

The conference brings together a panel of participants who will consider 58 questions. These have been assembled from the thousands of questions submitted to @power_2010. The questions and process are explained here http://citinq.3cdn.net/114ff346931f337110_kkm6i41qv.pdf  
James Fiskin explains the principle behind his process.

“Our subject is how to achieve deliberative democracy: how to include everyone under conditions where they are effectively motivated to really think about the issues. This is the problem of how to fulfill two fundamental values—political equality and deliberation.”

I think his analysis of the current barriers to effective participation is useful. He sees four main problems

• Individuals choose not to take the time to be informed because of “rational ignorance”. If I have one opinion in millions why should I take the time and trouble to become really informed about politics or policy? My individual views will have only negligible effects.
• Second, the public has fewer “opinions” deserving of the name than are routinely reported in polls. Respondents to polls do not like to admit that they “don’t know” so they will choose an option, virtually at random, rather than respond that they have never thought about the issue.
• A third limitation is that even when people discuss politics or policy they do so mostly with people like themselves—those from similar backgrounds, social locations and outlooks.
• Efforts to manipulate public opinion work best with an inattentive and/or uninformed public. If the public is inattentive, then it may not take much to persuade and it may be easy to prime. If it is uninformed, it may be manipulated even if it is highly engaged or even emotionally gripped by an issue. In that case, it may be easily misled through misinformation or primed to consider only certain dimensions of an issue.

I think this analysis will seem pretty accurate to many people. It certainly does to me.

An important aspect of James Fishkin’s work is that it measures the way in which the opinions of his representative groups actively change as they are given more information.

The experiment going on in London this weekend is something that I think we should watch with interest.

We can’t go on like this Dave!

 The hoardings have gone up. A large head shot of David Cameron with “we can’t go on like this” all over the country.

The prospect of five whole months of electioneering is not an appealing one. Today I tuned in to hear David Cameron deliver his press release on the Health service. I did this because I really want to know. How is it that Dave sees the Health service, what is it that he actually intends to do and how does it differ from the actions that are already being taken by the Labour Government?

Dave’s promise of a less divisive kind of politics, in which he should acknowledge the positive in the actions of his opponents, is just two days old. So this event was a disappointment to me on two fronts. I did not get any of the detail that I was looking for and we were back into Dave’s habitual attacking mode.

My mind started to wander. I found myself asking does David Cameron suffer from a mild form of Tourette syndrome? The characteristic of Tourette is a tic, a little quirk that you are not quite in control of, most likely to appear when you are in a stressful situation. Playing the role of “the next prime minister” must be pretty stressful. His party, and those who hope to gain his victory if it should come have invested so much hope in him. It is not an enviable position. The scope for getting it wrong over a five month campaign is considerable.

I first became aware of David Cameron’s tic back in March 2009. He came to Stafford for a photo opportunity. It was a contentious thing to do at the time. A journalist questioned the appropriateness of his being there, and his response of “Rubbish” really upset me. At a time when emotions were running very high in Stafford it felt both unhelpful and gratuitously rude. It is only subsequently that I have realised that whenever he feels just a little under pressure his response is to pepper his speeches with words like “rubbish” “fake” ”huge” “Massive”. These are protective words used  to discourage further questioning. They tell us something about his emotional state but little about the facts.

Because his speech this morning conveyed little I went to look at the draft manifesto. The tic is evident here too. Take the first paragraph after the preamble. (In this blog I am just concerned with the language. I will come back to analysis of what he is saying on another occasion).

“We will scrap all of the politically-motivated process targets that stop health professionals doing their jobs properly, and set NHS providers free to innovate by ensuring they become autonomous Foundation Trusts”. This is followed in the next paragraph.

“With power comes responsibility, and it is essential that doctors and nurses are properly accountable to patients for their performance. We will unleash an information revolution in the NHS by making detailed data about the performance of trusts, hospitals, GPs, doctors and other staff available to the public online so everyone will know who is providing a good service and who is falling behind.”

This is quite puzzling. There is the data that he likes, we need that and it will empower us, and there is the data he doesn’t like which has to be “politically motivated process targets

A little further down the page we get to what can be cut and what is sacrosanct. It is unclear where the data for the “information revolution” lies. Is it a specially valued part of the health service, or is it part of the amount “that Labour is currently wasting on bureaucracy”?

So far I am not clear if we are just seeing muddled thinking, or if there is a real distinction which I am failing to see and need to have spelled out.

My concern is this. Most of us who take our politics seriously understand the scale of the challenges ahead. There will be a lot of words used over the next five months. This is a real opportunity to set out choices as clearly as possible and build a dialogue with the voting public. It can be a very creative process, one which actually changes the way in which our democracy works for the better.

At the moment that is not what we are getting. For me at any rate this is all too much about Dave and what Dave feels.

So now that we have reached day three of David Cameron’s campaign I can’t help feeling, “We can’t go on like this Dave!”

useful article “Come off it Dr Cameron” picks up on the fact that many of the proposals picked up by the Conservatives Draft manifesto are already in place  http://www.guardian.co.uk/commentisfree/2010/jan/04/cameron-changes-nhs-happened-already

seminole

seminole Patchwork

 

 

Do Politicians know enough about Science?

The Guest editor on Radio Today’s programme this morning was a scientist. One of the questions that the programme explored was the relationship between science and politics.

The point the editor was making is that many of the most important and difficult policy decisions that face us now involve complex scientific questions. Three major examples include Climate Change, Energy and the Ageing population.

The investigator had done the maths on this. There are very few Scientists in Parliament, many MPs are not particularly comfortable with scientific information, and there is a tendency for politicians to pay more heed to the media and public opinion than they do to scientific advice.

He had done some background research. He had looked at the manifestos produced by the different parties in the two most recent elections and found that for the two elections the work “science” did not even appear in the Conservative party manifesto.

This does seem to tie in with an uneasy suspicion I have had about some approaches I have seen to “scientific matters” by the Conservative party over this last year. This has been highlighted by the troubles we have had here with Stafford Hospital.

The report into Stafford Hospital carried out by the Healthcare commission, effectively divided into two parts. There is a section which looks in a fairly simple way at care procedures, and identifies some of the problems that were occurring. This was a matter of simple observation. There is another section of the report which looks at the way in which information was collected within the hospital and the quality of data. This is a more complex “technical” section. It in fact showed that there were real problems with the quality of the data and that because of this the HSMR figures, and the excess death figures that were an extrapolation from these figures were completely unreliable.

Journalists have in common with Politicians that they are seldom from a scientific background, and the journalists who were first on the scene to pick up the headlines from the Healthcare commission report swallowed the juicy bits ( patients stories of bad care) and ignored the bones – they did not make any effort to come to terms with the complexity of the data, and came to some seriously wrong conclusions because of this.

The fact of the matter is that there were serious problems with the data which gave alarming but essentially false figures. This triggered an investigation to look for problems in care. Some problems in care were found, and the journalists then made the mistake of saying that problems in care had caused the number of deaths that could theoretically have occurred if the initial figures had been correct. This led to the groundless but journalistically appealing idea that 400 deaths had been caused by bad care. This is something that does not incidentally occur within the report at all. It is purely something that arose during the case of the first press conference. What the question was, and whose idea it was to ask it are all now lost in the mists of time, but that is where the misinformation came from.

It is perhaps easy to say in hindsight that the government should have questioned the use of these figures more strenuously. I think this ignores the heightened emotional context. It was pretty impossible to raise any note of dissent against the unanimous voice from the media in those early days. I immediately set to work to read the report in full, but it took me over a week to be sure that I was reading it correctly, and get second opinions from people I respected, by which time the numbers of “deaths” was established as “fact” in most people’s minds.

The government did I believe do the right thing. They immediately set in train a full report to look at what had gone wrong and what needed to be done to put it right, and a second report to look at why the monitoring systems had failed to raise any serious alarms. These processes have over time given us the much less remarkable truth about some of the problems that did exist, and pointed to the way to resolve these problems.

The Conservative response was I think more questionable. They sent David Cameron down for a photo opportunity. They uncritically accepted the newspaper reports of excess deaths and made the assumption that if these deaths had occurred and there had been no warning then the monitoring systems had failed, and were therefore worthless. These assumptions permeated the Conservative party down to local councillor levels, and after a number of profoundly unhelpful and inflammatory statements to the press, efforts had to be made to take them to one side and explain some of the complexity of the situation.

The Conservative line very quickly became that trying to measure performance and set targets is a pointless operation, and that it was better just to leave it to local management to sort it out. They have extended this argument to many aspects of measuring health care performance and health outcomes.

My own impression is that they are wrong about this. Before 1997 there was very little in the way of good comparative data. Some of the information systems that have been brought in since 1997 have been problematic, people on the ground may not have understood the systems they were operating well enough to provide data of the right quality, but this is settling down. The systems are becoming more reliable, and they are providing real information that does help people improve care, and measure results.

What has happened in Stafford Hospital as a result of all the help and attention that it has received does help to prove this point. The statistical data collection systems have been overhauled and are now producing reliable data. This gives good early warning systems and this is resulting in real improvements in the quality of care.

This is a long story, but I think it does illustrate where the Conservative’s easy affinity with newspaper headlines, and discomfort with scientific or statistical data may be likely to cause problems.

The Reporter on Today went on to ask some politicians about the relationship with science. One of them, Margaret Beckett, said that there could often be real problems in dealing with scientific evidence, because there was often conflict between scientists, and the science was often complex. It is clear that she was making real attempts to understand the science, but there were times ( she quoted the example of conflicting science on what to do about badgers) when this simply doesn’t help with the difficult process of decision making.

My own feeling on this is that I want politicians to pay proper regard to scientific information, even when it is complicated, and I want a media which uses the specific skill of effective communication to make an attempt to explain complex scientific ideas, on the big problems we all face, in a way that people can understand

Just as a footnote on this it is worth looking at our own MP, David Kidney. He is not a scientist. His background is as a lawyer. He is however interestingly married to a scientist, and is very comfortable with listening to and talking with scientists.

Three of the issues in which he has taken a strong interest are Energy, Climate Change, and the Ageing population. All of these are issues in which science and data are the key to understanding the problem and finding a way forward. As a minister with the Department of Energy and Climate Change he has access to scientific opinion and makes full use of this. As someone who is closely involved in the development of policy relating to the ageing population and care he actively seeks acadmeic and scientific opinion and works closely with Stafford University Faculty of ageing.

His ability to understand and deal with scientific data – and take it beyond that so that he can present it to people who are not scientists, is well respected, and that is one reason why he was the chairman of the Science in Farming Committee.

Some twitter basics

Some twitter basics.

The notes that I wrote on twitter basics about nine months ago are now largely obsolete, because Twitter has changed so much. It is a very fluid thing but here are some basics that will work right now.

Choosing who to follow.
You have already made a start on this. The best thing is just to follow where the trail leads you. Search on things that interest you. See who is saying something interesting, See who they are following and who is following them. I always read the profile, have a look at several pages of their tweets, take a look at their website if they have one.
Once you are following someone you will begin to see some of the other people they are talking to and one thing leads to another.

Choosing who to follow back.
If someone follows you I usually try and work out why. Sometimes they are simply trying to sell you something, sometimes they clearly collect followers, sometimes they are following because they think you have something to offer them. I tend to block the clearly pornographic ones. I usually follow unless I have a reason not to!

Searching
With breaking news stories, especially ones which sound to me like media hype (loads of it around) I use the search box to give me a quick overview of lots of different angles on a story. Searching is so interesting you need to set yourself a time limit!

Hashtags
This can be a bit of a mystery. Hashtags are used for different reasons. It can be a very short term way of gathering thoughts into a conversation. There was one the other night for a #twitpanto which got very confusing. It is the standard way of pooling information about events #cop15 was the tag for anything related to Copenhagen.

Eavesdropping on conversations.
One of the slightly confusing things about Twitter is that you can often only see one side of a conversation. You have to be following both parties in order to see both sets of tweets, or you have to click on the @xxxxxx in order to see what this person is saying.
So far, there is nothing to connect the reply to the tweet they replied to. – maybe that will come some day.

Replies
Replying is now much easier than it was. Just clicking on the reply button will put you into the tweet box with the reply address already there. “In the old days” you used to have to start the message with @xxxxx. Now you can put it where you like in the tweet. Sometimes the @xxxxx is used not as a reply, but to let other people know who you are talking about. – giving them their twitter persona
If you use @xxxxx it only appears in someone’s twitter stream if they are following you, but I think it does appear in their @ file anyway.

Direct messages.
Direct messages are a private message sent to someone’s email , and also to their message folder. It doesn’t appear in the twitter stream. You can only dm to someone who is following you.

Retweeting
Just a way to pass on something that you think is interesting. The simplest way is to use the retweet button. This is a very new development, only about a month old, and a lot of purists don’t like it. You can do it the hard way by selecting and copying a message, A RT done this way will read RT @xxxxx do it the hard way by selecting and copying a message.
Most people quite like being retweeted – and if you want a message to spread rapidly which happens sometimes when there is a campaign then re-tweeting is a very important tool.

Link to a blog.
140 characters can’t do everything. You will probably find you need to set up a blog. I have a free one in WordPress. Which does the job. You can link wordpress to Twitter, and if you post to your blog you can use the twitter link to tell people about it.

Referencing
This is something I use a lot. If I am browsing on the web and find something of interest I will tweet about it. I use @tinyurl to shrink the web address so that it doesn’t use too much tweet space.

Lists.
Lists are pretty new, and people are still taking their time on using them. You can do without, but if you plan to follow quite a few people, for different reasons, it is useful to start grouping them in lists.

Follow Friday
This is something that I don’t use but probably should. It is a way of telling other people about people on twitter you think are interesting to follow. You will see on Fridays ( ok maybe not this one!) that people will tweet lists #ff @xxxxx @yyyyy @zzzzz

hope this is useful!

Copenhagen, Pantomime and the Cult of Heroes.

I have spent a day standing on a freezing market thinking about the reactions to events at Copenhagen, and about Pantomime.

I am sure there will have been thousands of comments, thousands of blogs. I have not seen or heard these.
Copenhagen is I think something quite extraordinary. A gathering of so many powerful people looking for the way to face up to this invisible threat; looking for the way to make change happen now. All of them I think individually feeling their way, uncertain of the right path. And there is all the positioning, posturing and national pride; the need to play to domestic audiences.

There were so many hopes and fear, such strong emotion. The young people freezing outside the conference hall, with the sense that this is the moment of their lives that mattered most of all.
The importance that everyone gave to the attendance of the leaders was telling. We were glad when we knew that Gordon Brown had committed early to being there. There was relief and expectation when we knew that Obama would be there.

Obama still has the aura about him. This is the man who brought hundreds of thousands of people out onto the streets of America, people who rose to the idea “Yes we can!”. People who felt this is the time, we have the power now to change our world.

Being in opposition, being a candidate, is in part about dreaming. Obama was able to catch the imagination with his vision.

Being in power is different. You learn that this is the art of the possible. You learn that you can in the end only achieve anything by and through others. It is not enough to have a vision, or even to be right. You have to learn to understand what others want, learn to compromise, learn to be patient.

Many people reacted badly to the partial imperfect deal that came out of Copenhagen. They wanted a great piece of Political Theatre, a moment that changed the world, a hero, someone who could slay the dragon with one swing of his sword. They got good but tired men and women, who did not sleep for days, practical people who accepted that there was no easy victory for today. This had to be a first step – part of a motion towards – part of the process of learning what was in each other’s minds.

And if there had been a binding treaty signed then and there, what would that actually have meant? Would the world have changed then and there? I do not think so. What we need here is something which has to be done by us. It needs the the small people, who do our jobs, and choose what to buy in markets all over the world, to play our part. This does not happen with the stroke of a pen, it happens with changes in millions of small choices made by millions of small people in every country every day.

Personally I think Copenhagen did change the world, but it is like the changing of the tide, it is a moment when nothing exciting, nothing perceptible happens, but after a little while you can say that is the moment that drew the line on the sand.

What has happened with Copenhagen and the months of building up to it is that many ordinary people who had not taken the time to think about global warming and its implications for their families and their world did begin to see this for the first time. It is also a point where many ordinary citizens throughout the world became connected into something much wider. They began to see this as their fight.

The miracle of social media means that this matters. It is far easier to make it count, It is far easier to find each other, far easier to connect, far easier to build this into a movement with an inescapable momentum for the right change.

The disappointment at Copenhagen’s failure to produce the big moment is predictable. The danger is that some people may see it as proof that a political approach can’t do the job and that leadership and heroes do not count. I have been thinking about pantomime. Pantomime does always have its hero, always just an ordinary individual who has the cathartic moment and triumphs over great odds, but the role of the crowd is always crucial. A pantomime without audience participation is meaningless. The hero can do what he does because we are there shouting “It’s behind you!”.

Copenhagen brought many people together. Relationships were made. The difficulties were clearly seen. What we will get now is months of work, much of it from politicians, to provide the framework that will make the actions which we take as individuals both meaningful and effective. We need to understand and respect this work. but we do not have to wait for it or to rely on it at the whole answer.

In the run up to Copenhagen my own MP asked consituents to use their contacts all over the world to involve their own politicians, to tell them clearly that we do want a treaty. I know that I personally failed in this. I did not know how to do it, but I have seen other little indicators on the web. Other people are thinking this way now. We can build the movement and we should seek to do so.

I believe that the big lesson we can take from Copenhagen is that the heroes we choose are an important symbol of our hopes. But if we want them to lead us in world changing action, we have to be ready to give our support, we have to be there and ready to shout. “Yes we can”.