The New Deal on Patient and Public Involvement

Tuesday 9th January 2007 Abbey Community Centre 34 Great Smith Street Westminster

Edited transcript of proceedings afternoon session from palantype by STTRs Direct

MARTIN RATHFELDER: Right people. Before we get into the nitty-gritty of the health select committee and how we think LINKs might work, I asked James to come and show us what is essentially a website. I did this because when I was sitting down thinking “We have got to have a LINK in Manchester – what’s it going to be like? How would it work?” because I have got an idea for our first project. My plan in Manchester I want to capture the experience of 3 or 400 pregnant women who will give birth during the course of the year, because this is a group we don’t normally relate to, they are not sick, but they – the point of birth is probably the point when health inequality is at its most acute. As some of you know, we had a little baby nearly 2 years ago, and in the hospital  – you could see in the hospital from the size of the babies who was going to do well and who wasn’t. It’s particularly acute in central Manchester because it serves areas of immense deprivation, the top ten wards most deprived wards in the country -about 4 or 5 of them are within walking distance of central Manchester. So this seemed to be quite a good thing for a LINK to do. Where are we going to get the 500 women, what could we reasonably expect them to do? I thought well maybe we could do this in the internet somehow. We’re not going to get these people to come to meetings all the time, anymore than you can have people who are sick because often people who are sick can’t come to meetings because of their illness. Maybe there’s something we can do using the technology. I know what James does. It’s not exactly the same as what I want LINK to do, but it relates to it. Its a device for, well I will let James explain what it does. I shall say James used to have a respectable job in a university doing research into general practice but now he has become a social enterprise.

DR JAMES MUNRO: Thank you very much for that warm introduction. Thanks for inviting me. I know there will be one or two here who have heard me talking about this before. I apologise in advance if its all familiar to a number of you. I will try to add in a few bits I have not spoken about before and also give you an update. Those of you who were at the talk before some months ago will have heard me speak, perhaps I can bring you up-to-date on where we have got to.

So Patient Opinion is what I am going to talk about. As Martin said its a website. What about the web, could the web help in some way? Could it contribute to patient involvement? We didn’t have the web when CHCs were around, we have the web now. Could it be part of some solution? I am not saying it is the solution but could it contribute, could it be part? There’s no doubt that the web is transforming the way that people access and share information about all kinds of things, but just a few simple examples here that maybe familiar. For example you can get on to the web and book your holiday, not just book your holiday you can see what other people thought of the same holiday. See what people thought of the hotel you are going to. You can order the book on line, but you can also see what people who have read the book thought about it. People are already doing this. They are sharing all kinds of information about their experience on the web for other people. Recently people have started to share their photographs. If you go on to the web to look at people’s wedding pictures or you can upload your pictures so your relatives in Canada or Australia can look at them. You can even upload videos on the web. Could people’s experience of healthcare also somehow be shared on the web? Could that play a part in PPI? That’s the question.

We find the web already beginning to create reputations, companies ,commercial companies, are very aware of how their reputation can be made or broken on the web. They are engaging very strongly with what their customers think, talking to their customer through the web. So there are precedents for this kind of thing in the commercial sector.

Now of course the NHS is on the web already, you can find out a lot about your local health services on the national health website NHS UK. You can find out about nearby primary care services, your hospital, whether there’s disabled access, the wards, the opening times, all kinds of thing you can find out. You can look at what the Healthcare Commission thought of the quality of the care in your local hospital. You can look at what the Commission For Social Care thought about the quality of care in your local social care residential care facilities. You can look at all those things.

What you can’t see at the moment on these official sites is what the patients say about their experience. So the idea behind Patient Opinion that we thought was worth a go, it’s early days, bit of an experiment, we’re learning as we go. We recognise we don’t have a solution. We’re just starting off. What the question was, what about sharing patients experience of healthcare on the web? Would that be a worthwhile useful thing to do? Would it be valuable? Who could make use of that sort of information? So that is what Patient Opinion is about.

Of course there’s some good things about the web, its a very public forum, everything. One of the good things of the web it’s public. Once something is on the web everybody can read it. That makes it a very public forum to share experiences. That maybe a good thing or a bad thing depending on what you are sharing. Its also very wide like accessible. Its not universally accessible, not everybody has web access. About 60% of UK households have broadband access now. About 15% of people over 65 are regularly on line, but there’s still a way to go but access is constantly increasing. If you don’t you can get access to the web in very many Libraries, doctor surgery, and hospitals. You can access the web at home. You don’t have to go to a meeting to share your experience about your use of healthcare. It’s something, you can go to the clinic, you could go home and share your experiences. You could even be in hospital, using one of the television screens you have in front of your bed these days. You can even share your experience while you are still in bed. We might need a bit of help … could you share your experience on line? {Laughter}

Of course the web can cope with vast numbers of people as the number of people sharing their experience increases, costs don’t increase very much. Costs of running a public meeting of course increase with the size of the venue, and the security refreshments,. {Power break}

DR JAMES MUNRO: I think what we’re learning here is sometimes technology doesn’t work, but I will come on to that as a disadvantage.

One of the other important things about the web it allows even the quiet people to have a voice. Even if you are somebody who can’t get to a meeting, or won’t go to a meeting, or doesn’t like to speak up in a crowd, even the quietest people can have a voice that is equal to the voice of everybody else. It’s a very democratic medium, given access of course, it’s a very democratic medium. It also allows people to retain their anonymity. There are pros and cons to that of course. One of the reasons people don’t say what they think about their healthcare experience is because they are anxious about how it will affect their care and their relationships, and it’s important to allow people to share their experience without necessarily having to share their identity with everybody.

So those are some pros. There are some cons to the web, sometimes the technology doesn’t work and some people don’t have access to the web, but as I said that is increasing in the home and other public spaces. Its an unfamiliar medium to many people. It did require a lot of thought going into how we present our information on our website to make it as easy and accessible as possible. Very often, even with familiar healthcare organisations we’re wanting to talk. It’s not a face to face medium, and then things like public meetings and forums. It doesn’t replace them but it can compliment and provide another source of information.

Because its an anonymous medium, it may be difficult to establish the authenticity of the person making the comment and trust as well that’s a key issue you will see when we come to think about, and getting feedback. Trust is very important.

NEW SPEAKER: Before you go further on the cons, lies can be expressed by the medical world if a patient is suffering back in the hospital that could have a consequential affect on someone else way waiting for a very serious operation, that is wrong on the web shouldn’t be given such

DR JAMES MUNRO: There are opportunities and dangers here we need to be very careful thought about, but let me come back to if you have got questions. You will have questions I am sure. Let’s save them up to the end because you may find I answer them as we go along.

So we have set up this website we thought it was good idea, that’s why we’re doing it, simply because we think somebody ought to try it. We thought why not us. It’s a website for patients to give feedback about their health services. At the moment it’s about hospitals. But also to see what other people are saying. Its also for the healthcare providers and commissioners themselves to see what people are saying, and also to be able to make responses to what people are saying on line. And it also allows providers to compare their ratings with those others to see if they are doing well or badly in the eyes of patients.

So we set it up as a social enterprise. As Martin mentioned it’s not part of the NHS, it’s not part of the charity sector, it’s set up as a company but it’s set up as not for profit. I can go into detail about that if you like. Set up as a social enterprise and a not for profit enterprise. We share the values of the NHS. Here’s the website here, I was hoping we would have internet access here we could do it live, but it have had to take pictures of the internet because we don’t have reliable access in this room. There’s 2 things you can do as you come to the site you can see what other people are saying or you can contribute your own experience.

If you want to see what other people are saying, you enter your postcode there in that box. You can also type in the problem you are interested in, whatever its interested in, broken ankle, heart, diabetes. The website will find a list of the relevant problems. You can see these are our local hospitals listed up here, it tells you how far away they are from you and these yellow diamonds are showing how other patients rated those hospitals on the basis of their experience.

You can see apparently a few ratings there I will on to how busy the site is getting, but we expect that are traffic through this site will go up probably ten fold in the current year. You can compare different hospitals. You can see that patients are not giving a single rating. They are rating several different dimensions of care. Medical nursing care, cleanliness, parking, being treated with respect, information and decision making being shared, these are the things we are inviting patients to raise. You can go on from there to look at the particular service of interest, your local rheumatology service for example, see how they are rating that service, the contact details there for the health service if you want to contact. We’re not a complaints service. This has not been set up to take complaints. If the patient wants to make a complaint we will email them back and ask them to make a formal complaint if that what they want to do. We’re not a complaints service we don’t process complaints. Patient Opinion is about collecting up all the experience about what is good and bad and what could have been better, but people would never dream of making a complaint which is probably most. You can keep clicking away on opinions that interest you, about services that interest you and see what people thought, and if you had been asked in advance of us doing this what sort of comments you thought we would get, you may have thought we would get lots of complaints, lots of moans, lots of people saying how awful it is. Actually quite the opposite. The largest proportion of the feedback we get is very positive. People wanting to say thank you. People wanting to say it couldn’t have been better. When we get feedback of that sort, where we get feedback of that sort we’ll forward that to the staff concerned. That positive feedback we forward that on. Here some positive feedback, about a visit to A&E. Here’s some contrasting feedback about a visit to A&E elsewhere, where the person is saying the staff are grumpy and short tempered. Here’s the typical mixed feedback we might get where people say lots of things about “my stay in hospital was very good, lots of the staff were good, the care was terrific but there were particular things that bothered me – the parking, the cleanliness, the food or a particular member of staff, who was rude. Whatever it might be. You can see here for example somebody talking about how long it took to be discharged, they were discharged at 11 AM but it took till 8 PM to get medication. These basic well-known problems, but reinforcing that on the web in their feedback. Here’s an example of how intimate the web is.

He’s somebody who’s go in for an orthopaedic procedure. He found the toilet was not designed for somebody with a hip replacement, and he even talked to the other men on his ward who agreed they found the same thing. Then he posted that on the web. That’s not the sort of thing you would get in an average satisfaction survey is it, {laughter} or a public meeting. How else are you go into find out about these micro aspects of patient care unless you give people an opportunity, a public but private opportunity, an opportunity in which your identity is hidden, to say something about your experience. So its a neat medium the web for that kind of thing. You wouldn’t get up in a public meeting and say this sort of thing but it something the hospital needs to be aware of.

We want trusts to be able to respond to what people are saying. Here’s an example of someone saying they are disappointed with  the care they have got, because of the fact it was a Bank Holiday, because the patient was also a nurse she felt neglected. Here we have the site allows healthcare providers to come back and make a response, here’s the trust responding saying what they are going to do about this.

Of course this is an unfamiliar medium to trusts as well, and what we’re finding is that there’s quite a learning curve for hospitals in working out how to respond to this kind of public medium. It’s not something they normally have to do. So this very new for everyone. It’s new for patients to use it and very new as well for the health service.

So our experience to date I think its still early days, we’re still learning here. We still don’t quite know how? During the year just ended we had 1,500, that was our first proper year, that a low figure, we weren’t terribly surprised by that. As I say much of the feedback we got was very positive, and some was very critical but usually even when its critical feedback its done thoughtfully, people are saying this wasn’t good enough and here’s what would have been better. So usually very thoughtful though particular bits of feedback are particularly difficult for healthcare advisors.

We don’t publish everything that gets posted on the site. We have an editorial policy. We clearly wouldn’t publish things that open us to a risk of defamation. We have to read every single thing we publish and check it fits our policy. That may address the issue you raised. It wouldn’t be right to allow people, at least on this site, there maybe places on the web where you can do this, but if we allowed people to say anything about anything, the site would lose its value as a constructive and thoughtful forum. But we do have a editorial policy but even with that we are able to publish over 95 % of everything. Trusts are able to respond we do have them responding to patients. They are naturally rather wary about it. We thought they might get the idea of this much quicker than they have. Actually I think we’re finding that trusts are not just quite seeing what the possibilities are. It’s taking a while to get that. They are a little bit nervous about it. Obviously the minute they start to engage in public forum this it’s difficult. They are finding, they are wary of this, we are finding they need to learn a new style of communication to respond. It’s a very personal medium. It’s one to one but everybody can see it. So it’s a very different medium from a standard press release or corporate communication. We’re already seeing some trusts making small changes to service in response to patient experience posted on line. For example changes to time in which to ask day surgery patients to come up, and changes to ward facilities. Just small aspects, but nonetheless things that have been important for people’s experience.

So I guess you will have a lot of questions, but I want to put a couple of questions to you as well. We think we could go in all kind of direction. We want to cover more services. At the moment we just cover hospital services. We would like to broaden it out to cover maternity care, particularly mental healthcare, also primary care and potentially more broadly than that. We hope it will be possible in due course for you to post up your experience of any kind of healthcare. But we also want to widen the engagement. I see it as a resource, a resource of patient experiences in the public forum that everybody can refer to nationally or regionally, or locally. Actually you could a local debate about for example, rheumatology services in London, in which case everybody could see the patient experience the debate was based on. Therefore is this something that could be used by LINKs, by overview scrutiny committees, by local councillor’s, by MPs, by the media debate, the quality of care. I see it as a resource. How can it be used? Could it also be used at a national level for example by national patient charities like Diabetes UK or Asthma UK to support their case for changes to services?

So we’re interested in this not just being about information but also generating improvements to services. That’s, I would be interested in your thoughts about that. I will stop there. Do visit the site. What we need more than anything at the moment is your experiences. So if you have recent experience of hospital care you want to share it, please do. If you find the site or awkward or difficult in anyway please email me we will make changes.

NEW SPEAKER: Do you actually pass the information on?

DR JAMES MUNRO: Sometimes we get postings which we can’t publish because they are potentially defamatory, nonetheless if we think they are genuine we have a procedure to checked genuineness. We will forward them to the chief executive of the trust but won’t publish them on line. I can remember one instance where the post came from a member of staff who was whistle blowing about the service they were working to. We forwarded it to the chief executive it turned out they were already investigating.

Steve Peat: South Essex service user forums, just interested do the trusts or do you exercise editorial control over the trusts

DR JAMES MUNRO: The question is do we exercise editorial control over the trust’s response and do we enter into a dialogue with the trusts. Very often when we send a posting through to trusts the first thing they want to know who was the patient. Of course we don’t tell them. They want to know which ward it was on, unless the patient said which ward it was on we don’t tell them that either. But sometimes they want us to go back to the patient and ask them which ward was it. We will go back to the patient and email them and ask them. So we act as a broker, a go between, between the trust and the patient but maintaining the patient’s anonymity. That’s obviously crucial. Trust in the other sense.

We do in principle exercise editorial control because potentially the trust could defame somebody too, but its never happen that we had to make any substantial change but clearly we have to retain the right to make the changes.

MARTIN RATHFELDER: So do you let them put any old bland rubbish?

DR JAMES MUNRO: If we think its bland rubbish we go back to the trust and say we think this is bland rubbish what about a more helpful reply? I think we see it in terms of learning. The people in the trust this gets passed to will be people like director of nursing services,

NEW SPEAKER: Do you report back to PALS?

DR JAMES MUNRO: We don’t report to PALS. We’re building a relationship with PALS in South Yorkshire but we don’t have any formal relationship. Of course the PALS people can go on to site like anybody else to see what’s being said.

Boba Rangelov: I am coming from Barts and London NHS trust, recently we established a patient information reference group, and we have about 20 members patients, carers, members of local organisations and other organisation, working with our trust who are members who have a specific interest in patient information. So recently I was told by one of the patients who completed a pain management programme he put up a website like an on line forum for the patient who completed this programme. A brilliant idea. I contacted our communication department I sent the CV to them to see whether is there any chance for them to develop something like that. And I think with your Patient Opinion it’s an excellent way of communicating in a different way with patients who are maybe house bound who can’t attend meeting because of health condition, commitments many other things. And more and more people are on line. So I just wonder – they didn’t say no, they did tell me that its so complicated actually to establish something like that, because of policy procedures, and many other things, but they said we will think about it and actually we had a meeting on Monday. We had somebody come in senior manager from communications, and the reference group he’s going to present it. If they decide in future to go ahead with this, would it be alright if they get in touch with you and your organisation and maybe pick your brain, because you have policies around what’s going to be actually published what’s going to be presented.

DR JAMES MUNRO: Yes that would be fine. There are of course hundreds or thousands of fora on the web for particular diseases, particular patient groups, particular condition so on. They are very easy for people to set up so if the patients themselves rather than the trust want to set up a group that’s a very easy thing they can do. And of course that overcomes all the, in a sense, the governance issues.

Boba: That’s what they told me. He can independently set up his on line forum.

DR JAMES MUNRO: Many, many thousand of people have. People are doing that all over the world. What we’re doing is probably more or less providing a place where people can engage directly with their public services in a much more personal way. What we hope is that actually who you are engaging with when you put your opinion about the toilets, that doesn’t go to the chief executive. That would be the wrong person, that should go to the manager of that service. What we hope is that as we move forward through Patient Opinion the engagement into the health services will be engagement at the day-to-day operational level where people can change their service directly in response to ongoing patient experience.

Josephine McClean: Luton primary care trust. I think an excellent idea, I saw you before you came. I think we should now take to it primary care. We have got 4,000 patients, load with 3,000 one has been struck off his patients of 3,000 are going to other doctors who have already got 3,000 so trying to see a doctor is really difficult thing. We have got these big areas of deprivation. But the programme on television last night which I thought was excellent but the one showing how a mobile phone in the forest areas is making all the difference. I think the things of following Mums and loosen on the buses all the kids have got a mobile phone and could they access it if we started to do something like this for our patients? primary care access in our areas of huge deprivation, everybody with mobile phone because they somehow text into it. That’s the bit I don’t understand and how much would it cost?

DR JAMES MUNRO: Currently they can’t. We have talked about text. There is a cost with text that there isn’t with doing it on line. But as I understand the mobile phones that are coming out currently are all starting to get to the point where you can get on the web through your phone. I think maybe in a year or do we will all be on the web without even trying. Its being the fastest technology take up of any industry, the web.

NEW SPEAKER: Just a quick comment if the service is to be the most use in the future to LINKs it seems to me that you will need to extent the service to seek the needs of social care service users, otherwise LINKs only going to get half the picture as it were, within their remit. The question it is one thing to say right more and more people are going on line, and more and more people are using websites, but there is an issue about a lot of them who don’t actually have the keyboard skills to really communicate in the way you would wish. Can you offer any help in that area?

DR JAMES MUNRO: We have an 0845 number which you can call. One of us in the office will jump to it and take down your post and put it on the web for you. We also have a freepost facility. We issue little post cards where people can write their experience just post it into us. We have those two things. Of course they suffer from the fact they are not very highly scalable in the way the web is. We can manage the 0845 number for now but if everybody started calling it we would have to set up a call centre. What we hope is that as time goes by we will find that the web is more accessible. Now your other questions was? About social care I would personally be very keen. I constantly raise it in our organisation because my Mum has just got into residential care. This social care is desperate, how are you about to find out which home your Mum can go into wouldn’t it be great to know what people thought. I think social care there’s a big need there but there are 2 problems. One is that I don’t think we would get as many opinions as we able to get in healthcare because I think people who are using social care might be even less in a position to use it and the other thing is who would pay for it. What I have not discussed is what our business model is. We’re going to need some income. At the moment we get that by charging a subscription either to trusts or PCTs or we hope we’re doing to do some deals across West Yorkshire for example we charge the health service a subscription to be able to log in to get all sorts of the stuff. Whether we could get that kind of subscription income from private residential care I don’t know.

MARTIN RATHFELDER: No but you might get it from the local authority,

DR JAMES MUNRO: Something I am keen on.

NEW SPEAKER: I think social services department would be more like to subscribe than PCTs funnily enough because that certainly my experience in Hampshire, you get more out of social services providing money for this and that, and engagement, then we do from the health.

DR JAMES MUNRO: Well then we should pursue that. I agree I think its important.

NEW SPEAKER: I saw the list about car park problems, you have not posted about disabled access. Can you put that as an extra thing on like communication support, deaf awareness, booking interpreters. Most PCTs don’t know how to book interpreters and have you got access to other spoken languages, could you put into a different formats, for different things?

DR JAMES MUNRO: Good point. At the moment we have got just those 7 dimensions of care, and that’s because they are the dimensions that are used in the national patient satisfaction surveys. There are lots of things that we could add to that, but of course if you add more things people are less like to get to bottom of the page. So there’s a tension between information we want, and what’s practical to get. I think the direction we would like to go in, although we’re a bit of a way away from it at the moment is be able to create specific surveys for specific people to fill in, so if you have used a particular service then the questions it might ask or give you an opportunity to answer are a different set of questions. So if you went onto the site said I want to answer questions about or give my views about disabled access, or communication, there would be an opportunity to do that. But I think we have to think carefully about how to bring that in.

MARTIN RATHFELDER: Now I don’t want to spend too much time on this because really what you ought to do is go and have a look at it.

DR JAMES MUNRO: You should.

MARTIN RATHFELDER: But it seems to me that, say for my pregnant ladies, if we had some money, we could do some sort of deal with you whereby there was maybe a special page for the Manchester pregnancy survey, that you could collect it because all we want you to do is provide the facilities that you already do just to have something slightly different but not very different, that would work?

DR JAMES MUNRO: It would. We are working with someone like that at the moment that particular relationship.

MARTIN RATHFELDER: Then we could create a database of our Manchester pregnant ladies. You could protect their anonymity.  That’s one of the issues that’s going to be important, am I entitled to know the names of all the pregnant women in Manchester – no I don’t think I am. I don’t want to know their names. What I want to do is be able to ask them things they may or may not choose to reply. If we for example we can send them all message in week 20 to say have you had such and such a thing that supposed to have happened by week 20, how was it for you?  that might work

DR JAMES MUNRO: Yes we’re quite keen on the idea that some point we might move from just sitting there waiting for patients to put their experiences in, to actually e-mailing people who have previously put their experience in saying how has it changed? What about these particular questions? what are you thoughts on the service in this way or that way? That would be an example.

MARTIN RATHFELDER: That seems to be a possible way in which LINKs could engage with a large number of people, possibly protecting their anonymity but giving them the opportunity to come back to us, and for us to then say “Well we have got this database of 500 women, and 499 of them say this was crap. What are you going to do about it?” Because that, we were talking quite a lot this morning about rules, and legitimacy and powers, but my experience of the CHC was that that didn’t make any difference at all. What really made a difference was when we were on the front page of the local paper with good stories that happened to people or not happened to people. Not the fact that we were entitled to write to the Secretary of State or something of that kind. And if you have got all this data, potentially you have got a very big lever haven’t you?

NEW SPEAKER: A fundamental point I find all this fascinating but even though trusts themselves use the national patient survey to accredit their supposed top 5 of this that other for the healthcare commission, if you drill down into that it’s very few from the activity who actually respond if somebody on line give a opinion like yourself presents quite often the trust’s response is “This is anecdotal” and dumps it in the bin and sends its away what are you going to do

DR JAMES MUNRO: Its anecdotal, then there’s public and anecdotal. Its it may be anecdotal to the trust but its real to the patients. Its real patients’ experience. It’s affecting who they go which will affect their reputation. Anecdotal has power to it.

MARTIN RATHFELDER: I am conscious we ought to be talking about the health committee questions, that’s one of the things we ought to be getting out of today, I am trying to give people who have not spoken a chance. I think we probably ought to move on look at the health committees questions, because I certainly feel I have got to write something, by tomorrow night really, about what we think about the whole questions. So can I suggest that people get a cup of coffee, and if you have not already another one if you have had one, then we come back look at their questions. I hope most of you have already seen the draft response that the Socialist Health Association has put together, and some people came back to me said what about this that or the other. I want to go through the questions and see if we largely agree about them and which ones we think are the most important and the ones where we ought to be lobbying our MPs to say this is what we have got to sort out. Okay so about 5, 10 minutes while I connect my computer. {Break}.

MARTIN RATHFELDER: Right people, you are allowed to carry on eating and drinking. We said we would finish by 4. I would like to try and do that because I know some people have to go various other places and I know people start drifting away at half past 3 because they always do. This is the sort of unstructured part of the day. What I have got is questions that the health committee are putting to which we are supposed to respond. Now of course there’s nothing to stop people writing to the healthcare committee about other things, but it usually helps that you start with the questions they put. Some of them are rather big questions, like the first one – what exactly is the purpose of public and patient involvement? I am not sure that I know the answer to that. Because I can think of at least dozen different answers it depends a bit about who you are talking to so I thought we won’t dwell on that unless somebody has got something burning to say because I don’t think anybody is

NEW SPEAKER: You said unless somebody has got burning to say I am looking the what you have put down which is wonderful but it seems to me that the end of your paragraph was good because it was to the point and saying something positive about it, why not put the positive things at the start

MARTIN RATHFELDER: Suggesting that I waffle, how could you! {Laughter} I think the difficulty with the Government’s position is as people have said every bloody thing you get from the health service these days is full of “patient public involvement is a wonderful thing… the service should be patient led, patient driven, patient centred”, what does all that mean in practice?

NEW SPEAKER: Nothing!

MARTIN RATHFELDER: I rather think most healthcare seems to me doctor centred, doctor led and doctor driven isn’t it?

NEW SPEAKER: I don’t think doctors defining that in the widest possible clinician sense would disagree with you totally

MARTIN RATHFELDER: I know they would.

NEW SPEAKER: They disagree because they feel as helpless as patients.

MARTIN RATHFELDER: This is the war going on between doctors and managers which have been going on for 50 years, I suspect there is not much to be gained by dwelling on this particular question at this point.

NEW SPEAKER: I think the purpose of the PPI is to elicit any shortcomings which are within the service, or problems which arise, to try to find a solution to the best interests of the patients.

MARTIN RATHFELDER: Yeah?

NEW SPEAKER: What about learning and good practice?

MARTIN RATHFELDER: The difficulty is most of the answers you can give are also probably the function of management. We’re employ lots of managers in the health service are they not supposed to be doing most of those things as well? What are we bringing to the process that different? The managers are supposed to be looking to make a sure that things don’t go wrong, that they learn from good practice, if there’s a complaint its followed up, what am I doing for nothing, that the manager is not doing for £40,000 a year?

NEW SPEAKER: I like this very much because its slightly on the monitoring, I think we ought to go back before that talking about the patient and public being involved in the strategies. Tthere should be an absolute right for patient opinions and patient views before services are designed, before things are put into place in order that the users of the services eventually going to get the service they want not something that’s been dictated to them by managers.

MARTIN RATHFELDER: So commissioning essentially. We should be more involved in the commissioning. Because what we’re saying is we as patients and the public, probably have a better idea of the sort of service we need than the managers do, who are not patients or the public.

NEW SPEAKER: No its before commissioning surely when they decide what they are go into commission.

MARTIN RATHFELDER: That’s part of commissioning I think.

NEW SPEAKER: The National Institute For Clinical Excellence, was set up to find ways to best meet patient’s needs that lady was talking about they do involve people in developing their guidelines. My bug bear is we have these guidelines how do we ensure they are been implemented within our trusts. It’s not that we have not got the right guidance, the right information, we know where this information needs to be used for patient but we’re not getting the implementation

MARTIN RATHFELDER: What you are saying what we’re delivering into that process is feedback

NEW SPEAKER: Absolutely.

MARTIN RATHFELDER: Some of us ideally would be well informed we would know what is supposed to be supplied, and we say it says here you’re supposed to do this when you cut my leg off and you didn’t do it.

NEW SPEAKER: Really that should be one of the roles of LINKs to scrutinise that the publications that NICE produce are being implemented within the trusts.

Martin Jones: I think that the points that made by everybody so far actually reinforce in one respect the first question is absolutely fundamental, and I think the most important thing to recognise and as patient communities we are ourselves quite, we have {inaudible} we have as much knowledge and expertise to bring to the table as an orthopaedic surgeon or cancer specialist but we have different expertise. I don’t have the knowledge of budget structures and all that sort of stuff a commissioning or planning manager would bring to the table. I definitely don’t have the medical knowledge that a doctor particularly a specialist would bring to table. I have a knowledge of the impact on me and people like me of the way services are delivered. That is why public patient involvement, they need to know what the impact is of whatever you are doing on the patient if the impact is not good enough there’s no point in doing it in the first place. We need to have the confidence in ourselves. It’s not about a democratic right. It’s far more important than that. It’s saying you can’t possibly get it without us, and you won’t know what you are doing unless you are in regular ongoing contact with us – We should therefore go into the next few questions on the health committee report is how do you make sure that the nature of patient and public involvement is such that you really do get a representative feedback knowledgeable feedback not just with 20 people on that committee for maybe 200,000 people in that town.

Janice Kent: Sussex university hospital. I represent the patient on this commission group they are now doing the very best to try to get me off the group because I am highlighting the problems that the money allocated by the Government was not enough. That we need more. We have had whole groups of patients that have been ignored. The NICE guidance is flawed. We can sit there as patients make all sorts of perspective on information there’s got to be some critical way somewhere just seeing how the patients are used and what’s happened. I am not quite sure how we do this, Ian Gibson set up one of his enquiries for us but for years and years you can be batting away but you are ignored if you speak out against them its useless.

MARTIN RATHFELDER: That brings us nice nicely to the second question. I agree that the central issue is actually what’s its for. But it’s a big question. Perhaps a more useful question is what form of public and patient involvement is desirable practical and offers good value for money. Getting people along to meeting and not taking any notice what they say, apart from anything else it assumes that the time of the volunteer is worthless which is not an assumption I am prepared to accept. I am not going to put any time or effort into my local LINKs if no bugger listens to it. In my experience people will put time in if they think its going to make a difference.

Martin Jones: Can I make a quick observation on the point she just made, you have raised a massively critical point I think this about the links that LINKs have with the rest of the community. Because if you are on your own, you have got no chance of doing anything other than persuade those people to do what you think it right. If it’s about pressure that a different thing. Couple of people have talked today that have represented different patient organisations here from our point of view people have already started trialling pilot networks round the country where we’re bringing together in the same PCT area commissioners, managers, patient groups to discover services specifically to musculo skeletal conditions. I also expect Arthritis Care to make sure that we have people with arthritis represented on as many of these LINKs as possible those people will not be acting in isolation if they start feeding back to myself and my colleagues that this going on of this is going on as far as musculo-skeletal services are concerned we have a national obligation not just the patient bodies to actually pick that up as an issue. Whereas an individual member may not be able to pursue banging their head against a brick wall, if that is then fed back into other networks some of us will take up the political pressure and leave the LINKs to carry on find out what’s going on. You can’t be the only as it were outlet when there’s no longer receptivity.

Pat Seers: Ealing PCT forum. Well I would like to go on from there I think there are 2 dreadful things we seem not to have complained about, pushed into, one of them is that we should have the scrutiny committee and the local authority that’s Riddick does 30 years of CHC, about 4 years on scrutiny committees I know which I would like to be funding it’s the Department of Health not the local authority. An others thing am very conscious about we have to say we have access to any local authority, private and voluntary organisations that give us the service that we need. Now, when I come to thing about getting money, I think we must have enough money so we could have a regional organisation, and a national organisation. Because although I think the website is fine for giving out information and feedback, all that, you need to have somebody there or some organisation there which can pick up on that and see what is the current thing that is coming up, things like that and give us specific information as to how we, and all these people from forums can get together and pressurise people from the health committee and the standing committees. We have got to have someone who can help us to pressurise, you can’t imagine all these little people from each of these local authorities are going to get together and try to pressurise the Government. We need to be have something that is absolutely on its own, funded as a CHC was by the Department of Health, and I am disappointed that we’re not pressing for that. If we’re going to complain we might as well complain and get what we think is really what we need.

NEW SPEAKER: Hear hear!

Malcolm Budd: I take a slightly more independent line on this as I read legislation brought in, I spent I am mainly involved in mental health. I spend most of my time colluding with the patients and staff and GPs trying to improve the service, I set aside the enormous expense of the management team. I don’t have the time to argue with directors at a higher level what can be done at a lower level. I have deliberately chosen to get involved with the staff see what they think bit. And sometimes you can make big changes. We have developed a new mental health centre in Airedale, a project we found just before Christmas they have not got all the revenue funding to run it. Talking to a guilty director of a trust is a waste of time in that situation. You have got to come to some arrangement, a practical arrangement with the staff and trusts the staff that they will get on with the job. My experience in civil engineering if you pick the right staff, back them give them the materials, let them get on with the job they get on with it you get a very good cheap well built job. If you interfere consistently as a manager you worsen the situation. It’s critical they stop with management nonsense all these management structures they don’t need them. They have got qualified staff who are doing the job as the patients opinion indicates perfectly well in most cases. You get all this other rubbish. I compare private hospitals with national health service hospitals. In a private hospital there are fewer levels of management, there are ward managers who pick their own staff, if a ward manager talks to a board, they hear what he says. If a an NHS managers talks to the board the one person who actually knows what to do has minimal invention ability. That’s my main point. It’s amazed me the Democratic Health Movement talking all this management stuff, who cares? I taught it was about health! Not budgets and diagrams I thought we were here about health.

Guy Collis: from UNISON we’re doing a response to this as well, on this particular question it actually refer specifically to LINKs its a general question. One of the points we’re trying to make is reassert our belief in this citizenship idea of effective public patient involvement which when you when you call it public patient forums is one way of doing it. Effectively its under threat from the Government. Just to finish off, it was just to make the point that whatever form it takes you should treat patients as citizens rather than consumers because the patient choice agenda doesn’t really work in favour of local accountability, because patients are encouraged to help shape the health service while if they are actually just consumers its a much more fundamental point.

MARTIN RATHFELDER: The other point that needs to be made only a very small proportion of health service “consumers” if we have got to call them that are ever in a position to exercise any choice, its only about 20% of the budget -people who have acute medical problems or who go to casualty who have chronic medical problems are not in a position to decide to go to a different place for their treatment even if they want to it’s never going to happen. This individualised choice is only ever going to affect a small part of what the health service does.

NEW SPEAKER: Particularly if they shut hospitals.

MARTIN RATHFELDER: Yes. And I think most sensible people recognise that, don’t they?

Boba: I just wanted to say I think from the beginning of my work at the PPI Barts and London, I always thought its really important to be talking about true patient public involvement that its really a dialogue constructive dialogue between patient forum members, or not just patient forum members the public in general, which includes carers, community organisation bodies, support groups, focus groups everyone as a citizens, and I think its really important to have that constructive dialogue. Its always important to be realistic. Because there are certain things that actually can’t be changed. Because of certain so and sos. So in PPI I think there are things that can be changed, there are things that can be changed in certain period of time, there are things that can be changed overnight like changing the curtains on a ward and things that can’t be changed. we have to distinguish these things. We have to be realistic in the PPI what can be done and what can’t be done. Within certain limits and certain resource which exist or don’t.

MARTIN RATHFELDER: Maybe one of the thing we could be building in, it seems to me if were having something like a LINK which is quite big, many of the people involved won’t know much about it. There will be some sort of core group of people, who I see as providing a continuity who will be in a better position to understand that some things can be changed and some things can’t, some things take a long time and some things don’t. You can’t expect people coming in off the street to necessarily understand that at the beginning. What it seems to me is people like us can contribute the continuity. You could get a thousand people come in for a consultation exercise but you can’t expect them to carry on doing that day after day. What I want is somebody who will give a message about what was appropriate for them, so that when it happens to me, it will be appropriate to me too. And clearly in some things like terminal care, people don’t come back to report on how it was for them. But we’re all going to die one day. I would quite like for example, someone to try to capture the experience of those people so that the services is a good service so when I need to use it its also a good service. But we’re never going to get mass participation in that are we?

NEW SPEAKER: Can I just say one more thing, as much as its important to get patient’s views, and carers views everybody’s views opinions suggestions, its also really important to that feedback to directly address a particular service, then draw up the action plan how to work on those problems. Because what the patients from our experience what they really want is to have an update, to have feedback, what has been done. And that’s is what we’re working on because without proper feedback and without a proper action plan, on these particular issues, its pointless to have patient representatives on every particular group.

MARTIN RATHFELDER: When I circulated my draft about why we thought we were being abolished after only 3 years, I put because ministers like to be seeing to be doing something, and nobody dissented from that

NEW SPEAKER: It was more or less said at the meeting you went to on the 13th of December when the question was asked why we’re doing this, albeit slightly rhetorical question the answer was it was about time we did something. Do you remember?

MARTIN RATHFELDER: Yet I think there are legitimate reasons that the NHS the Government now envisages will not work as it was envisaged to be working 5 years ago. That’s as far as I am prepared to concede.

Jean Turner: East Yorkshire. Its a national body and yet we have no national, organisation. we have good ones and bad ones but we never use good practice we never find out what the good ones are doing and why they are good. In our area we do very well. We have representation on most of the hospital’s committees. If they are building a new building or renovation we’re involved from day one. If they are building a new cancer hospital – we have had patient representation for 4.5 years its a PFI job it takes an awful long time, but we also use the experience of the members, and they have been on other committees so when LINKs comes in we will get a lot of difference because we have members on old people committees on children’s committees right across the board but the ones that don’t have any outside links but one of the questions before was how can we raise money. We can do services for health authorities and be paid for them. We can do them better than anyone else because we do consultation that way but we don’t get paid for them. By doing this we meet literally hundreds of members of the public that won’t come to an AGM but they will come to us. We have got to get a national service that everyone can join in the same way

NEW SPEAKER: Can I ask that person a question?

MARTIN RATHFELDER: Yes go on?

NEW SPEAKER: You said you were involved from day one, were you involved in the choice about whether your new cancer hospital would be done by PFI or not —

NEW SPEAKER: No there was no other way. We did have discussions going on if you have no money and the answer is PFI, you can’t say well find the money somewhere else we’re talking about £168 million it doesn’t grow on trees. We need a regional centre. I don’t like PFI it has an awful lot of problems with it but we’re going to have a service. And as a cancer patient, I want care for cancer patients.

MARTIN RATHFELDER: There’s a whole series of specific questions about how it should be designed. Remit, I think everybody seems to think covering social care is a good idea. How about health? Do LINKs only relate to illness or do they relate to health?

NEW SPEAKER: Health.

NEW SPEAKER: Well being

NEW SPEAKER: And public health.

MARTIN RATHFELDER: Well that’s everything really isn’t it or more or less. Level of independence.

NEW SPEAKER: Total.

MARTIN RATHFELDER: I don’t think there is a thing such as total independence is there? As near total independence we can get.

Malcolm Budd: Its an attitude of mind Martin. A chief executive said to me in a private meeting he said ” Of course Malcolm when the trust is signed up you have to agree”. I said why should I. In the end I said to this chairman its not your bloody money mate, because they are managing it like it’s their money, like it’s a private company. They shouldn’t be allowed to.

NEW SPEAKER: Independence without power is no independence.

MARTIN RATHFELDER: Exactly you can be very independent but powerless. We can get very excited about independence but we certainly need the perception of independence. If the public do not see we’re independent why would they come to talk us to.
NEW SPEAKER: The most important thing to emphasise if the funding is going to come under the umbrella of local authorities they have got to be organised {inaudible}

NEW SPEAKER: Its got to be sufficient to cover proper administration.

MARTIN RATHFELDER: Well there will never be enough money, because actually involving people is quite expensive.

NEW SPEAKER: I know it is.

MARTIN RATHFELDER: If you look at all the money from CPPIH, I think there’s going to be more

NEW SPEAKER: Its already been cut by 20% all the support budgets have just been cut by at least 20% in December.

MARTIN RATHFELDER: I didn’t notice the salaries of the chief persons in CPPIH being cut.

NEW SPEAKER: I want to clarify here I remember there’s one question at PPIF, what was it like for PPIF recognised most of us said we want to be independent. We want our own PPIF. The question I want to ask us why wouldn’t the Government listen us to and allow that to take place rather than put us with the local authorities? It never happened. I can’t understand why the Government wouldn’t adopt that wishes of all the PPI F who voted we want to be independent outside away from all the politics.

MARTIN RATHFELDER: I think the answer to that is if they are going to abolish CPPIH which I think most of us are happy see there’s got to be some other way of divvying up the money

NEW SPEAKER: A large organisation based somewhere like Birmingham they don’t need, its obvious {inaudible}

NEW SPEAKER: Except this bit what about the membership – the one thing that CPPIH does is appointing members, interviewing people, weeding out people who are,

NEW SPEAKER: {Inaudible}

MARTIN RATHFELDER: What do we think about the, if we go the way that Meredith is talking about when there are thousand members, presumably they are all volunteers. You are not interviewed by anybody, or screened or checked to know whether you have got any brain cells. It will just be everybody.

NEW SPEAKER: Without commitment you are no good.

MARTIN RATHFELDER: Yeah but not everybody will be equally committed or knowledgeable. We can have a bigger organisation, and clearly the bigger it is the less commitment you are like to have from each individual person.

NEW SPEAKER: They could advertise nationally I know we’re a committee but can it apply?

NEW SPEAKER: I don’t want to get too hung up on this. I am involved in all sorts of volunteering things, people volunteer. My experience is that if you get somebody in a volunteering group who is not pulling their weight, who is pulling their own agenda, then the group itself manages to sort that person out. We should not be too hung up on getting the right people. I think the groups will eventually evolve and sort out.

Kail Gunaratnam: The problem with CHC it got dominated by the white middle classes. 90% of the organisation are run by white middle classes, so a black ethnic minority didn’t have a chance to get involved with CHC. At least now we have got PPI forum advertised nationally, I was able to get in. That should be a mechanism by which people should be allowed to take part effectively in the forum.

MARTIN RATHFELDER: So we would like to see some effort made to try to recruit people from those who are not reached so often, let’s put it like that. I think it often very difficult because they are often very practical reasons why people don’t participate. if you don’t speak very good English for example. If I was in, Germany and I didn’t speak much German I would be very reluctant to join organisations because I think I wouldn’t know what was going on. They might provide me with an interpreter but I wouldn’t have known that. I think we can make efforts in that respect.

NEW SPEAKER: I am sorry on that last point first of all, you make what at first sound like a sensible point but if its the case that there is a significant number of people who need to use the health service, who do not have English as a first language then its essential actually that the LINKs have on it people who represent who are able to represent people with language difficulties. Whether those languages difficulties come about from some kind of health condition or whether they come about because they simply do not speak English but maybe 17 other languages fluently, but nonetheless they are under-represented.

MARTIN RATHFELDER: The point I am making is not that we don’t want those people to come in, its inherently difficult to reach them

NEW SPEAKER: Its not as easy its never as easy to include anybody other than the middle class people because we what I am picking up from the gentleman over there a positive effort needs to be made its not good enough to say here we are, come and join us. We have to be pro-active in ensuring that we’re genuinely representative otherwise the people who can will and the people can’t are the ones that are most like to already be excluded from the health service who will have nobody to advocate for them. This absolutely critical. Its not easy, its not just attitude of mind but its got to be at the for front of the LINKs, its got to make the efforts to be as inclusive as its possible to be of the local health economy.

Kail: Can I just add that efforts should not only be unilateral coming from the LINKs body or whatever, it should be equally bilateral if that the right word, they too should make the effort to learnt language be part of it. I am not speaking for the black and minority ethnic community, its just that I as I did I worked in France I had to learn French in order to carry my job through. Or I couldn’t work.

NEW SPEAKER: Can you sum it up as pro-active inclusivity?

NEW SPEAKER: Its not necessarily the case that you need the ethnic minority representation because I do think we get it, but on our forum it was the white middle-aged middle class chaps like me who, discovered that there were animal mucin in the healthcare kits that the hospital was using,

MARTIN RATHFELDER: What were they animal what?

NEW SPEAKER: Animal mucin the mouth care kits.

NEW SPEAKER: The general perception is that black ethnic minority they don’t speak English is absolute nonsense. There a high percentage of these people can fluently speak English. I come from generation, one is a doctor one is a density, the problem is they you don’t take active part in any of this whether in politics or local government or in the council elections, unless you ask them to take part

MARTIN RATHFELDER: Let’s move on from that we could spend all afternoon talking about that. Funding we talked about quite a lot already, support though, do we want our LINKs to essentially employ their own staff?

NEW SPEAKER: Yes!

MARTIN RATHFELDER: That’s how we see it. So we see the local authority giving a contract to “health support incorporated”?

NEW SPEAKER: Yes.

MARTIN RATHFELDER: Health support incorporated will then employ some staff who will be answerable to LINKs

NEW SPEAKER: Perhaps forum or link members should interview those staff because matter we want to be part of the appointment we don’t want to be saddled with people we have never seen before?

NEW SPEAKER: Yes.

NEW SPEAKER: We ought to think of becoming a wing of the healthcare commission and have the health commission as the main body employing the people, and sending them out to the various districts so it would be independent of any local authority, or the health service. So I am for a link with the healthcare commission.

MARTIN RATHFELDER: I am sorry to say I understand the healthcare commission didn’t want us.

NEW SPEAKER: Well let’s get them to.

MARTIN RATHFELDER: The Government thought as you do that this would have been a very good way of doing it, but the healthcare commission said no thank you very much.

NEW SPEAKER: Can I ask another possibility, wherever possible to encourage social enterprises to form for this purpose, be they social enterprise, that has got the values and principles we would want.

NEW SPEAKER: In addition to staff we also need space in addition to space we also need facilities, like tables, chairs telephones so on. Computers.

MARTIN RATHFELDER: We need to have an entry in the telephone directory, that’s one of the weaknesses of the present arrangements the patient forum in Manchester doesn’t exist in anyway there’s no office, just the Black Health Agency who are our support people which is fine. We all need our own websites too don’t we? People with enough skills to run them.

NEW SPEAKER: Can I just throw this in the air, if we become independent and that will give us the avenue for attain a charitable status. If you obtain charitable status then of course that is that aspect of independence. We can also start raising funds. We can’t get money from anyone unless the Government and the local authority or the funding bodies think we deserve it. Therefore, going back to

MARTIN RATHFELDER: So we could look for money elsewhere?

NEW SPEAKER: Its positive, its possible that we can get our own money. We don’t have to hung up on the aspect of finance.

NEW SPEAKER: I think that the healthcare commission should have a watch dog and perhaps LINKs should be their watch dog because all the problems in our area, the panorama programme the majority of people here I am sure saw the programme on the state of one particular ward in the hospital of which I am a PPI member, but the healthcare commission came up with the report that they didn’t think there any need for a public enquiry. We need another body and LINKs could be that to be the watch dog for what the healthcare commission does and reports and it produces we don’t want to be in twined with them really.

MARTIN RATHFELDER: At the moment nobody apart from our friend at the back is proposing that we should be so we don’t need to worry about that at the moment. One small thing about the support – do we want to have a knowledge management system? {laughter} no hands for the KMS.

NEW SPEAKER: KMS is a bit like commission staff, useless. .

MARTIN RATHFELDER: David Orchard used to work in the travel industry designing system for travel agents which of course are designed to keep the public out because it’s a special system for travel agents where they know things we don’t. We do need something where we can share experience

NEW SPEAKER: And knowledge.

MARTIN RATHFELDER: That will probably be internet based.

NEW SPEAKER: It needs to be user friendly.

MARTIN RATHFELDER: It needs to be transparent.

NEW SPEAKER: Is there any relationship between strategic health authorities and LINKs

MARTIN RATHFELDER: Not particularly.

NEW SPEAKER: I was thinking about LINKs when they are set up are going to be a lot of cross border interaction which is going to be difficult for each LINKs to decide who is responsible for that. I would have thought the strategic health authority would have input into that into finding out general {inaudible} across borders.

MARTIN RATHFELDER: That needs us to the point somebody has already made. We need a regional and national organisation.

NEW SPEAKER: That’s what we asked for

NEW SPEAKER: {Inaudible} they are not like to listen to LINKs.

MARTIN RATHFELDER: We may have to force them to. Because I think an effective regional organisation, would be able to go along to the what is now called the regional health service board, and create a fuss. If it was well organised. If it was plenty of information, if we collectively across the north-west not just in Manchester, did a survey of child bearing women and found that 47 % of them all suffered some bad thing that nobody was prepared to do anything about, that was 30,000 women, we would be on the front page of all the papers. We would be on Panorama and what have you. Its about using the tools. You have got to have people who have got some gumption to go out and stir up trouble.

NEW SPEAKER: You can gather information as much as you like if you can’t analyse it you’re not there at all.

NEW SPEAKER: Regional organisations would be absolutely right I am not convinced about the need for a national organisation.

Let me say why I want regional. Because the organisation in Government now, regional Government offices each region has also has got a forum which is composed mainly of voluntary sector members and health and well being is within their remit. And the way that LINKs could be extremely effective will be working with these regional fora and on which Government office is there as well. I will now hear your justification for national.

MARTIN RATHFELDER: The reason I want a national organisation is so when I listen to the radio in the morning on the day after Pat Hewitt has announced the national health service has had its best year ever or whatever, bat there’s somebody from a patient organisation which is answerable to patients not just a self appointed friend of Claire Rayner who can say, yes it is or no its not. Because at the moment, there isn’t anybody in any impartial knowledge based status to say yes this is a scandal or no its not very good. That’s why I want a national body and if we had, at the moment all they do they put up the chief medical officer, somebody like that. Well the chief medical officer is a nice bloke but nobody believes that he would ever get up and say actually the national health service has had a really crap year because what the ministers did was a load of rubbish. We need someone who would be believed because people would know that they would say that if necessary. That’s what we need.

NEW SPEAKER: Another reason why national organisation is more effective than region when you are talking about maternity service doing a survey in the north-west why don’t you do it throughout the country. One of the two things the commission did last year which I thought was effective last year was the national survey about Patient Line and food survey they had 2 in the 3 years. And I think if there was a national organisation and it did similar survey

MARTIN RATHFELDER: When the CHC started doing their national casualty watch they went up the agenda a lot didn’t they. Because it was suddenly not just your local paper was in the Daily Mail as well. That made a difference.

NEW SPEAKER: Its all the talking national organisation as long as its not got CPPIH staff employed in it.

NEW SPEAKER: There has been a proposal at one time for a Royal college of patients and I really think that’s a good idea and not representatives of the national charities, that receive very high salaries, actually patients. And the small patient groups that come from round the country. The people that pick up their phone at 11 at night when patients are in distress and can’t get help from anywhere. People that can’t manage with their main arthritis, and not being understood they are the people that can really feed in what’s needed I know at one time there’s a college of health that lurked somewhere in south London, Barbara Edwards with CHC in the south-east, I think we should be aiming for something like that. The King’s Fund is dominated by people with high salaries, I don’t know much about the patient’s organisation now that Claire Rayner is associated with that, but I am not denigrating her, and they are just socialist chronies. I don’t have any political allegiance at all, but I definitely think we could get together get a Royal college of patients it will take time, years to build it up but make it reputable and recognised and respected.

NEW SPEAKER: I we have to be quite careful if this is just a general discussion about some of the thing that are not quite working in the health service from the context of patient, this fine. But actually if we want to focus on telling the health select committee what we think about PPIF, it may be influencing their report, let’s be absolutely clear the health select committee has no power but its extremely influential. What they publish will get those national headlines that we’re talking about and will influence the views of MPs. If we want to have any influence on that we have to be more disciplined and more generally thoughtful about what is effective. There are some givens, CPPIH will be abolished it will be replaced by something else. Maybe with our collective experience we can influence how that is shaped. I must admit I am more given to the arguments for a regional structure put by the gentleman at the back than that of the national structure but what I do think I was unhappy about, and there are arguments either way, what I am unhappy about is your reasons for a national structure. Because getting genuine real serious influential patient feedback and scrutiny is a goddam thing to do its. To stand up on the Today programme to go against Patricia Hewitt is widely ambitious and not what this is about. There are loads of people who get up and speak with knowledge to Today programme to Newsnight or wherever we need to get the remit at least right. We’re not in this room going to be the only people that will contribute to that, even if we can be disciplined enough and leave aside our wider gripes, many of which are entirely legitimate. I have not disagreed with much that I have heard but we have got to focus on what we should be saying to the health select committee which is credible, which they might therefore incorporate in their report and which might therefore be publish and have acted upon. If we simply use it as a receptacle for our general frustration than anything good in what we say is going to be lost.

MARTIN RATHFELDER: I think this one is the key, if we’re going to have an Act of Parliament setting up something like LINKs, what sort of powers could we think it ought to have?

NEW SPEAKER: To visit and inspect,

MARTIN RATHFELDER: I think

NEW SPEAKER: The same powers we have got now.

MARTIN RATHFELDER: I think the power to visit has been conceded. What Rosie Winterton is saying if LINKs are very large its not going to be sensible to have everybody CRB checked but you could delegate a group of the visiting and let them go and visit thing. Whenever I visited things on the CHC I was never in any power over patients I couldn’t make people take their clothes off or anything of that. I felt they, {laughter} I feel the whole CRB thing is a bit over blown. But if we have got to do it because its expensive, I am quite happy with that.

NEW SPEAKER: You can’t ask the hospital to get, if we don’t have power if you make any visit to hospital, and you make some recommendation the hospital authorities maybe against it.

MARTIN RATHFELDER: They may not implement it anyway, the power we’re after anyway is to have what we say listened to and responded to. If they say no, sorry we can’t do that,

NEW SPEAKER: We need powers that require people to give evidence.

NEW SPEAKER: I would like to see us get power like the CHC which is to take powers to Secretary of State.

MARTIN RATHFELDER: How about information? Now, the public have considerable powers over information, you don’t need to be a member of a patient forum to write to a trust and ask them questions they have got to reply to everybody are there special powers over information that we might want? I mean the obvious one is about contracts. I would like to have, LINKs to have, the power to inspect the terms of contracts, commercial contracts or NHS contracts whatever they are. Possibly with some sore of confidentiality clause because I accept there might be times when it would be quite legitimate for some services to say “We do not want the teams of this deal to be published”, but that should not necessarily prevent the link from doing what they are.

NEW SPEAKER: {Inaudible}

NEW SPEAKER: Would you be treading on the toes of the non-executive directors of the PCT and the hospitals, because they are supposed to be the watch dog on the trust board, so if you also have the same power then are you duplicating that?

MARTIN RATHFELDER: My question about non executive members of the boards is what are they for? Are they purely decorative, what are they doing that the paid staff are not doing. Who are they representing, if they are representative of patients perhaps they should come along and be part of the LINK should they?

NEW SPEAKER: Should we not be asking ourselves I am conscious I am not formally part of a PPIF, some people will have been asking themselves this for the last two or 3 years. What is it that LINKs actually ought to be doing in order to influence the health service because the question of what powers should we have, surely could only really be answered when you have identified what you want to do and what obstacles being able to do that properly, are presented. So I mean somebody made some suggestion about the power to hold an enquiry and require people to give evidence. I think there’s some merit in that. Because I think its very clearly a major crisis of problem emerging in an area you would want to look at it and put forward strong recommendations just as the health select committee is doing at a national level. It slightly worries me. I am sure this is the way PPIFs have been treated is an element of confrontation. We also need to think constructively if we are going to have an impact for patients, if things are going to be different, better, for people with various health conditions that require them to use the health service, what role can we play that would actually make sure that the knowledge and experience and intelligence we have been talking about today is actually utilised probably. When we know exactly where we are going to focus on our activities then not having the power to do that this is an inhibitor we should have the power to do that. Whether or not having the power to look at contracts. I am not sure what the purpose that would serve. I remain to be convinced it might serve a purpose but I would like to get to grips with it more, the delivery of services. Some PCTs are setting up referral clinics to determine where patients should best go for their first consultation. Perfectly fine except where the referral clinics are being gatekeeped by administrators not by clinicians. That something in my area I would like to have influence over. I am sure the same thing is true in other disease area, and age groupings. Finding some way of engaging with general influence it’s actually much more useful then making sure we get on the Today program.

NEW SPEAKER: How would we get in?

NEW SPEAKER: I think it would be important the influence what the PPI are they are now can bring to the table and what we can bring to table is 3 years of experience and all the contacts they have made and that the PPIFs should actually be a core of the transition to new LINKs, and automatically transfer into the LINKs and if they don’t want to, opt out not the other way round.

MARTIN RATHFELDER: Its 5 to 4 our Palantypist its suffering from exhaustion, we’re due to finish at 4. We have not got, I think what you are saying is very valid what people are were saying I think about the central purpose of PPI and LINKs, was about feedback, essentially, wasn’t it? This is the feedback mechanism whereby the national health service gets told what is like to be at the receiving end. That’s the central message isn’t it. And what we need to be I suppose a megaphone.

NEW SPEAKER: Martin? This is the third of the select committees these enquiries that we have contributed evidence. The previous one about affect of patient involvement the select committee actually used their evidence which staggered me is in their recommendation the key thing I picked up from that is the select committee wants somebody, I think it well might be us, to have the power to say no. Have the power to say no, this service is not good enough, this service is under staffed unsatisfactorily the power to say no. Its very important.

NEW SPEAKER: We need a statutory power. We need the power to have statutory representation on all the decision making bodies. Whether its the joint partnership boards or about CT boards or the other boards you have to have statutory representation. You have to require the health committees to take up an issue that you have found that you have in issue about. The point of that being that LINKs however constructed are not going to be totally representative and they are not elected. Local authorities are elected and therefore they have some kind of mandate but because of their unwillingness sometimes because of their political make up and sometimes for other reasons, they are not now doing what they should all be doing in terms of their communities and if you have statutory representation on the decision making bodies then an extension of that power will be to require the scrutiny committees to look into something you have got a problem with, and this is where the possibility of what somebody comes in of being able to say no.

MARTIN RATHFELDER: When you say statutory power to be represented at these decision making, you mean to turn up at the meeting and be heard?

NEW SPEAKER: Take part as if you are a full member, and from the beginning of the end of the meeting, including the bit that the public are excluded from, and that it’s no longer at the discretion of the chairs of these boards to say whether you get a voice or not. In other words their statutory right to be involved from the very beginning of the decision making process about the health service and social care service

NEW SPEAKER: Can issue that totally compromises? You cannot be part of the decision making board, the role is to ensure that they have actually taken account of views from outside of that board not to be party to that decision making. I can’t agree with that lady at all.

Jean Turner: You are talking about what you should have national representative we also talked about having a voice overall. We’re talking about being a charity if you are going to be a charity you have to be a national body, but if you are going to be a charity and become what we are you would have difficulty getting a grant. They would say why didn’t the health minister get it you have to form yourself into a company we have done that with another body similar to what we are 2 years ago we have had no trouble getting money to we have a lot of money in the bank now as a national body, but we have got money from all sorts of places and this is what the best way to do it. You have got access to Yorkshire forward in our region and the other bodies throughout the RDA things like that. You have to look into what you have to do to get your money but you need one voice the Government will only deal with one or 2 people, they will not deal with 9 regions.

NEW SPEAKER: Correction on that by the way you don’t have to be national to be a charity. {All at once}.

MARTIN RATHFELDER: Its 4 o’clock time to stop. I think there’s a lot here, I don’t think we have finished this process, I think the most important message today is Richard’s message. Now is the time to go and bother your MPs and keep on bothering them, because they are go into have the debate in Parliament on Tuesday. Now is a very good time to make sure that your MP pays attention to it. Can I thank you all for coming, I will email you some sort of customer satisfaction survey, because I feel we ought to get some feedback about how we run our events. You are trying to desperately to come in

NEW SPEAKER: One point its a big point the lady who said you will lose your independence, the big difference is yes you do, I am on a board chair of PPI, once a year we get a health service group come to me meeting they come they let PPI members sit on the board so you don’t lose your independence.

MARTIN RATHFELDER: Okay thank you very much indeed {applause}

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