The New Deal on Patient and Public Involvement

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

Edited transcript of proceedings morning session from palantype by STTRs Direct

RATHFELDER: Our conferences are informal, we do not have a strict agenda, nor do we have events in posh hotels like some commissions for patient involvement I could mention. We try to keep them cheap. We like to get everybody to talk. There’s room in here for us to break into little groups, if we need to.

As you may have noticed we have a party of deaf people with interpreters, so if you want to make a contribution, please try to make sure that you do so in such a way that the interpreters as well as everybody else can hear what you are saying because apart from making sure that people who can’t hear know what’s going on, they are also making a record which I hope to capture after the event, so we don’t have to take any notes. Notes are being taken for us. The other thing is  – you shouldn’t say things you would not wish to be broadcast to the world. {Laughter} at least not if you are going to say your name.

It gives me, great pleasure then to invite our first speaker Doctor Richard Taylor who is an independent member of Parliament for Kidderminster and parts adjacent. Who of course I should be denouncing as he unseated a worthy Labour MP and the Socialist Health Association is affiliated with the Labour Party. I am sure our members have come to the conclusion that Doctor Taylor is jolly good thing and we’d rather like to have him in Kidderminster as it’s a conservative seat. One of the principles of politics which people often forget – you have to choose between things that are not very wonderful and things that are better. What you never get is perfection. That is part of what we’re going be talking about today. Various proposals for involving people in the health service, none of them will ever be perfect but most of us here today feel they could be better than they are now.

We’re having this conference today because the health committee announced they are go into have an enquiry into public patient involvement. The deadline for responding to that is, I think, tomorrow. I have succeeded in negotiating a short extension so all the wonderful things you are going to say today should get included in our submission. You can all make your own submissions and I think you should, as many of you as possible if you have something to say, bung them in. You may then get invited to House of Commons to talk about your wonderful ideas, which we hope we will be, because we have put quite a lot of effort into this. The Socialist Health Association has been interested in increasing the democratic involvement in the health service ever since we helped to set it up in 1948. We have run all sorts of conferences on this topic. I will talk about that later though. I will ask Richard to explain a bit about what a health committee is and does and what he wants this enquiry to produce.

DR RICHARD TAYLOR: I will stand up here. Thank you very much Martin. This a great pleasure to come and the huge privilege of being an independent MP is you don’t have any whips chasing you. If I think the Government are right I can vote with them, if I think the opposition are right I can vote with them. It’s really an absolutely uniquely splendid position to be in, and one that I am enjoying tremendously.

Just a quick word about the health committee first before I go on to the history and the future of patient public involvement. There are, I think it’s 16 select committees in the House of Commons, one for each of the major departments. They vary in numbers of membership from the smallest is about 11, the largest is up to about 18. And the membership is according to the proportion of the major parties in the House of Commons. So my first session when New Labour had a huge majority, there were on the health committee 11 members, 7 Labour, 3 Tory, and one Lib Dem. Very generously, the Tories gave me one of their places in that first session, when they did that without me prompting that, they said “and there are no strings attached” which was incredibly generous. They didn’t demand I took their whip which in any case I wouldn’t have done.

They were so sorry that I got back in 2005 that they said they certainly weren’t going to give me one of their places this time. But as the proportion of MPs had changed, its now 6 Labour, 3 Tories, and 2 Lib Dems and it was the Lib Dems that gave me one of theirs this time

The remit of a select committee is to examine the work, expenditure, and programme of the department for which it is responsible. Although it has no executive power the reports that committees write are very worked out based on evidence sessions, on written evidence, and I am extremely pleased to see the assistant clerk of the health committee here over there, because the staff of the select committees are absolutely vital. And they help us assembling the evidence, putting together the draft report, and health committees, select committees could not function without a clerk, an assistant clerk and a helper or administrator and specialist, committee specialists brought in for a small number of enquiries, then specific advisers for any one enquiry.

That’s what the select committees do, and the marvellous thing about them, certainly the health committee since I have been on, it it’s very rare for this sort of committee to divide on party lines. So almost always, one can get a consensus. During the last Parliament we failed on 2 occasions. David Hinchcliff was the chair of the health committee the first time, absolutely splendid Old Labour MP, who at one meeting we went to when we were going round the table to introduce ourselves I said independent MP, he followed and said “almost independent Labour MP for Wakefield” which I thought was absolutely marvellous. He really was.

The 2 enquiries we did where we could not get consensus in that first session, one was on the role of the private sector, and myself, the Lib Dem and some of the old labour members, did not like the private finance initiative at all. But New Labour and Tories were able to carry the day on that. And then again on foundation trusts. Some of us didn’t like the threat of a 2 tier health service that they might have caused, and so again we were rather split on that. But every other enquiry, and so far the enquiries we have done this session under Kevin Barron, who has a completely different style to David Hinchcliff in that he is a labour loyalist, but to my absolute amazement he is not the tiniest bit frightened of condemning the Government in the committee which is exactly what we should be doing when we think they are wrong. So I think its working quite well. That’s the background of how a select committee works.

Now going on to patient public involvement in health. A bit about the history. I am sure most of you were community health council members, and in the good old days, if you had a community health council that really worked it was absolutely excellent. And in Worcestershire, 3 major conurbations we had 3 community health councils and they worked because the Kidderminster one took the Government to judicial reviews over the downgrading of my hospital. We really believed that was one of the things that frightened the Government off and made them decided to abolish them.

The debate and the bill that came up to abolish CHCs I found very illuminating. It showed me that the real opposition to Government in those days back in 2002, 2003, with a huge Labour majority the real opposition came from the labour back benches who were rebelling and the House of Lords, the major back bench rebellion and the House of Lords. Although we lost CHCs we got patient forums. In theory, the primary care trust patient forums should have been an absolute splendid answer. Because they were more uniform than CHCs in that there was one for every PCT, and if you had been lucky enough to live in an area where the PCT forum has been active, well chaired with intelligent, helpful hard working members, then you will have had a superb example of how patient and public involvement in health should really work. I have been lucky enough to have one of those in my area, with a chairperson who has really taken it on, involved all sorts of groups including young people. He’s got a young people committee working. It’s so sad to see this really effective organisation about to go.

Now, in the last Parliament we did a very brief enquiry into patient public involvement in health, this was 7th report of the session 2002, to 2003. It was really based on just one evidence session with the minister who was responsible for patient and public involvement in health at that time. And that was David Lammy, and the first thing we discovered was that since 2000, there have been 4 separate ministers responsible for this in this very short space of time. Giesla Stewart, from February 2000 to 2001, Hazel Blears, June 01-May 02, David Lammy May 02 to June 03, and then Rosie Winterton who amazingly is still there. {Laughter} Now, we really couldn’t blame David Lammy when we saw him much for not really appearing to know very much about it because he had only just got there. He had not been responsible for any of the decisions that had been made. But we described how PPIFs form the corner stone of the new system for patient and public involvement. We believe that with patient involvement, it is particularly crucial that new arrangements are as clear and simple as possible, so that NHS patients particularly those from disadvantaged groups are able to negotiate the system with confidence and ease. So clarity was what we called for at that time.

Now, it was again at that time that Sharon Grant the chair of the CPPIH, wrote several things about the huge task she had been given and to give CPPIH the credit they did get a vast number of members on patient forums in the first few months but she said very clearly that this was such a new venture, it would mean at least 3 to 5 years to see what patient forums could actually do and to get them running and to get them all effective. And of course, long before that 3 to 5 years is over, the Government is abolishing what it set up to achieve this most important addition into the health service.

Right, now abolition requires primary legislation. There’s no time for this, so what have the Government done? They have slotted it into the local government bill. The local government bill, they have changed the name just to give us that little bit of comfort. It’s now called the Local Government and Public Involvement in Health bill. It’s going to be steered through by a local government minister, with nobody from health there as far as I can see. Its got 14 parts, 176 clauses, and 15 schedules. One part only, part 11, is related to patient public involvement in health, and 12 out of the 176 clauses are related to this. So its really a travesty. Now we believe the second reading will be next week. The second reading of the bill is where MPs should have the opportunity to oppose the second reading. Now as you can see the Government have been incredibly clever, there’s an awful lot of good in the local government bill. So is there going to be a great rebellion on this, are people going to oppose the second reading? Extremely unlikely. Particularly when this bit that we’re bothered about is just about one 12th of the whole bill. This really to my mind is absolutely devious. The other problem is there are going to be so many people who want to speak in this bill on the local government side of it, that whether I will try to get in on the patient public involvement aspect will have a look, it is really quite doubtful, because it will be one session. If it’s next Tuesday it will go after questions from 3.30 unless there’s a ministerial statement or question and it will go until 10ish. So whether we’ll get in or not, those of us that want to speak on the health side, I just don’t know.

Then a bill goes to the standing committee. Standing committees are completely different from select committees in that they always divide on party lines. So if you as an opposition member want to get an amendment through, you have certainly got your work cut out. The first standing committee I sat on, a Lib Dem sitting next to me whispered he put down 604 amendments and had never got one through. I was completely staggered because I didn’t realise until I sat on the first one, that there was a Government whip there always to make sure that the Government party had more members there than the opposition parties. I would have liked to sit in the middle but I had to sit with the opposition. It was my great satisfaction to realise that as sometimes I went with the Government and sometimes I went with the opposition, it meant that the whip had always had to keep one more Labour member there than he would otherwise, because he didn’t know which way I was going to go. {laughter} It gave me a great deal of satisfaction.

However the huge disadvantage of these standing committees is that they have limited time, and as this is one section, one part out of a 14 part bill, the standing committee may not even get as far as that. Because it takes clauses a bit word by word, and we may not, they may not even get up to number 11. So, things are looking a bit grim. Now, the bill itself, this part 11, parts of it read quite well. You start off feeling fairly happy. The first clause of part 11 says that each local authority has got to make the contractual arrangements for public patient involvement in health. Then it says the activities for a local authorities area are, promoting and supporting the involvement of people in the commissioning provision and scrutiny of local care services. That’s fine. Obtain the views of people about the needs for and their experience of local care services, that’s fine. And making views such as are mentioned above, and making these views known, and reports and recommendations about how local care services might be improved, to persons responsible for commissioning providing managing or scrutinising local care services.

So on paper that all sounds very good. But then the next little tiny clause, “the Secretary of State may by regulations amend this section for the purpose of adding to, varying or omitting any of the activities for the time being specified in subsection 2”. I mean its unbelievable isn’t it? They put it all down then they cancel it all out. That’s the first worry.

One of the many worries that have been expressed to us on the all party group for patient and public involvement is access. Because PCT patient forums have had the right of access to all health service premises in their area, and many of them have used this. Now, we get into huge trouble if we say this is to inspect these premises because that’s the job of the Healthcare Commission. One has to be very careful with the words we use. And in the bill when they talk about access, they do say that local involvement networks should have access, but they don’t lay it down as definitely as we would like and they actually lay it down specifically with reference to social services, rather than health services. So again its a bit woolly on that side.

So, as I said the second reading next week, we won’t know which day it is next week until Thursday. And we won’t know how many MPs want to speak in the second reading until just before, because all of us if we want to speak we have to put in a little letter to the speaker, and you have to say “Dear Mr Speaker please may I seek to catch your eye during the debate on such and such on such and such a date”. And then your name goes on his list, which I have never yet achieved the honour of seeing. So one has to get into the debating chamber for the beginning, the opening speeches because if you are not there for the opening speeches you will not be called. You don’t know when you will be called, so the first few debates that I was involved with I was desperately bothered because, getting to the age where one’s prostate is not as quite as good as it used to be, you sometimes need to go out of the chamber. {laughter} It took me some time to realise that you can walk round the back of the speaker’s chair come up and whisper in his elbow “have I time to go for a cup of tea?” or something. He will usually say “Yes but don’t be long”. So you rush off you have about 10 minutes, and you get back and then 3 hours later you are still waiting. So, the House of Lords is, I gather, much more civilised in that they know when they are going to be called and we don’t, or at least I don’t, and its slightly nerve-wracking waiting and hoping to be called. If a lot of MPs want to speak then there are time limits and these time limits can limit from 15 minutes to 8 minutes. I have no objection to those at all. If you can’t say what you want to say in ten to 15 minutes you might as well sit down in any case.

Right the next, that’s next week. Then it goes as I have said to standing committee, then it comes back to the House for a report stage then, and a third reading, then it goes to the House of Lords.

Now the health committee enquiry. Before we knew when this bill was going to come for its second reading, we felt very strongly, that this was one of the enquiries we should undertake because obviously the Government, if we believe them, they want patients and citizens to be involved not only in their own treatment but in the way the health service is being provided.

So, we agreed to do this enquiry. We have got 3 evidence sessions: on the first of February, the 8th of February, and the 22nd of February. And after that, we will have a meeting to discuss the brief form of the report then our staff, like Emma over there, will very kindly rough out a draft. Then we will go through the draft word by word, and add bits to it, alter bits, make sure the whole committee agrees with it, then it will be ours. The Government has a commitment to respond to select committee reports within 8 weeks. It’s rather a long drawn out process. I am hoping, and its no secret, that the chairman of the health committee will have had some negotiations with Government whips about the programme, because if the Government are genuinely going to listen, they should at least see this report before making the decision about what’s going to happen. Which means, in effect, they should delay the completion of the committee stage and the report stage debate until appreciably after the health committee has made its report. We’re putting an awful lot of pressure on the staff like Emma over there to produce the report within 2 or 3 days of our final evidence session, but that will not be possible because we can’t hurry it because you have got to get it absolutely accurate, so hopefully we have about, guessing, by the middle of March, – that would be the sort of time we would hope the Government would wait. But, we have got to wait and see. And as its tacked on to the Local Government bill, and precisely one 12th of the Local Government bill its rather unlikely that they are going to wait.

Now, what can you do, we do? Certainly one can remind the Government about the things they have said. In one of the White Papers, I am sure it must have been Your Health, Your Care, Your Say, they said we need a stronger local voice to affect change in services when needed. People’s voices need to be heard at a local level in a variety of different ways and they have to count. Organisations providing or commissioning NHS or local authority funded care must ensure local people play a full part in the planning, design and delivery of services.

So, they have said it all. So I think your job apart from sending in the evidence to health committee, is to tackle your MPs. Particularly Labour MPs, and if any of you are lucky enough to have some of the good 5 star rebels, those are the ones to tackle. But you also want to tackle the Labour loyalists and tell them how ridiculous it is tacking this on to a huge local government bill. You probably know that many of the papers have done league tables of Labour rebels. They are like hotels, they have 5 stars, 4 stars, 3, as far as one star and no star. The 5 star people are people like Kate Hoey, Ian Gibson, David Taylor, they are some of my best friends. {laughter} They are the people to cultivate, but attack the ones who are labour loyalists particularly and tell them how ridiculous it is. I shall stop there, okay Martin. {Applause}

Martin: I think we have got room for some questions, I think perhaps with Richard if you concentrate on the political process, what I want to do – Alison is going to talk a bit about the proposals in the local government bill about how this relationship with local authorities might work. There will be room for us later to talk about the particular questions the health committee has posed. I think at the moment we should talk about the political process and what the most effective strategies would be. So if we do questions in 2s or 3s. If you can say who you are.

June Price: Oxfordshire: that was very entertaining and informative talk thank you very much for that. I just want to ask you: you kindly gave the SHA some additional time to respond from here, given the inspiration this is going to provide us, would you allow us the same extension so we can get to you and your colleagues by the end of this week? that would be really helpful.

Martin: Can I say its not Richard who gave us the extension, it’s the health committee office, and I suspect that they can probably cope with things coming in a day or two late.

Emma Graham: We can cope I think. After lunch time on Friday we will have a problem, if people can try to get it in before then. Because the earlier it comes in the more time we in the committee have to read it and study it so the earlier the better.

DR RICHARD TAYLOR: The great thing is these people give us a bound copy of the written submissions, by the time we have the first evidence session. This so incredibly helpful. Otherwise we have loose sheets of paper floating round that we can never find, so can we take that that as long as they get it to you by lunch time Friday?

Emma: Yes.

DR RICHARD TAYLOR: And email is best

Emma: Its

Malcolm Budd: PPI forum in Bradford, mental health and primary care trust, director of the Cellar project mental health charity in Shipley. Is there no limit to what they can include in a bill in terms of diverse subjects? The other question is when will we have more independent minded MPs to get rid of this whip problem which is rather undemocratic?

Joan Penrose: My name is Joan from Harrow in Middlesex. I am a carer of someone with mental health problems, and what people in the mental health community have had problems with for years, is not only how the mental health services are delivered, but what the services are. There’s a great emphasis on the medical model now, changing the eligibility criteria, nobody is going to get anything apart from acute services. Things are going back in time, so my first question is how do people like us feed in? Were having an almighty fight about something in Harrow at the moment. I have brought stuff about that with me. I have just been to a conference called Getting Ready for LINKs. They had a meeting a couple of weeks ago. Rosie Winterton was there. I understand from Lesley Forsyth who’s one of the people running it nationally, that we have about a year to, well maybe 9 months, to feed in our ideas about exactly how the new LINKs system is going to work. So is this really true? there’s really still time after what we said

Martin: I think I can answer part of that, because when I am not working for the Socialist Health Association I am a member of the patient forum for Manchester PCT. We are one of I think 6 sites which what are they called, pilots, path finders, early adopters. I am an early adopter.

NEW SPEAKER: 8 sites.

Martin. And so we are starting a Link in Manchester, well any day now. But despite having been to the same conference you went to I am no wiser about how anybody imagines it’s going to work. {laughter} There’s not much in the bill which enables people to do things. It doesn’t really say what it is that people think they are go into do.

DR RICHARD TAYLOR: Can we take that one now? Firstly mental health has always been Cinderella, whenever there are deficits its the bit that gets cut because people feel you can’t cut cancer, heart disease and emergency services. Now the detail about LINKs is absolutely missing, and the chair of the all party Patient and Public Involvement Group and I as secretary of that group had a meeting with the civil servant who is organizing this, not very long ago Meredith. And he was full of encouraging words about how it’s going to work, and I was absolutely staggered, he was thinking of there might be sort of as many as a thousand members of LINKs. He was thinking that every group, whether its interested in mental health or drugs problems or whatever would have an input into this mythical organisation. So there is no detail whatsoever in the bill, so that has not been worked out and there is, and there are no really definite plans. I think its going to be up to particularly the trial sites – what do you say they are calling them?

NEW SPEAKER: Early adopters

DR RICHARD TAYLOR: To make absolutely sure that specialities that have their own forums at the moment are not neglected. The acute trusts, PCTs, to make absolute sure there is cover right across the board. Then no minister will tell you that its all worked out, because its not worked out. And Rosie Winterton I don’t think has much idea about what shape these things are going to take. So there’s lots of time to alter that.

Now going back to the gentleman from Airedale, which really takes me back because I used to live in Skipton a long time ago which  I really regard as my home, its nice to hear somebody from Airedale. A Government like this one seems to have the power to put whatever it wants in a bill whenever it wants to and I don’t know that there is any limitation but one of the things I will ask if I do get called in the second reading debate is on what authority are they doing it. Because it seems to be utterly, totally completely wrong to lob this to a big bill so it doesn’t get fair time.

ALYSON MORELY: Just to come in there; I mean my organisation is called the Democratic Health Network. We’re part of the Local Government Information Unit. We will be doing a lot of lobbying and briefing on the whole of the local Government bill. We know informally from civil servants that there was a huge amount of debate as to whether the LINKs proposals could be fitted in the bill, because there was a real debate about appropriateness and scope. But because some elements, I am going to come on to talk about that in my presentation, but because some of the elements in the local government bill, are about different partners working together in under local area agreements, extending scrutiny, the community call for action, those sorts of things, that they could fit it in on that basis. That is why it’s in the bill. Its very much as Richard said. It’s a tiny section of a very broad ranging bill, that is largely about local government and not about health services.

DR RICHARD TAYLOR: You also mentioned the problem of the whips, I wish there was – I mean that is not to have a whip at all that’s the answer to that! But the power of the whips is absolutely amazing. I have been in divisions where in the last Parliament Labour whips were so keen that Labour members didn’t go the wrong way, that they actually stood in the gang ways to provide a sort of physical barrier. Gwyneth Dunwoody was behind me on one. She elbowed the whip out of the way. She said “this is the way to Real Labour” {laughter}. I thought that was absolutely superb. They always stand outside the wrong lobby, and make a list of the people who have gone the wrong way. The Tory whips are not as forceful. Maybe if they were in Government, they would be. I just don’t know. But no. This is why at the next election I am trying to ferment a bit of sort of rebellion: get a few retired doctors standing as independents to protect the NHS, whether I will achieve anything I don’t know, but it will be nice to have a few more independents there.

Martin: If you’re going to start a political party Richard, we’ll have to start a campaign against you. Yes?

Martin Jones from Arthritis Care — certainly if Richard wants to get a few more rheumatologists in the House of Commons that’s good by us. I want to ask a little bit about your point about the timescales, of the select committee’s report and the likely timescale of the bill because the detail of LINKs and so on is not contained in clause 11 anyway although the suspension clause is a bit worrying, but it does seems to me that getting a lot of comments on the record in the House of Commons, about that part of the bill would be quite important. I know you said you presume Kevin Barron is lobbying the Government whips but you weren’t very optimistic. Is there any value in people here writing either to Kevin as chair of your committee or to anybody else to say we actually think that there needs to be a proper amount of time and discussion on clause 11?

DR RICHARD TAYLOR: Can I do that straight away? The important thing is to write to your own MP. There’s a convention in the house that we’re not allowed to take on problems of other MPs’ constituents, so you can write formally to health committee with evidence and your views but the pressure should be on your own MP because how many of you here, if you are all from different MPs a reasonable number of MPs would get your views. They are the people who have got to be told its quite ludicrous to try to push this thing through before a health committee report comes out.

NEW SPEAKER: Would you urge people to do that?

DR RICHARD TAYLOR: I would urge people very strongly.

Eileen Young.: Thank you Doctor Taylor its been every enlightening, I absolutely agree the Government have behaved in a weasel like manner. I am Eileen Young. I am the area chair for Bucks part of South Central Ambulance Service Patient Forum – get your tongue round that lot. I also have another disadvantage in living in Bucks because Bucks will be Tory until hell freezes over. I never thought I would give them any praise at all. Both the Tories in Government who are interested in the health service, and patient public involvement particularly, have actually put out some very good stuff on it. And there’s a lot of sense in what they have published about the health watch scheme. But again, its party political, capital P which anathema to a lot of us who prefer independence. We’re sick and tired of this Government meddling in health as they have done in education and various other aspects, they can’t seem to leave well alone. How can you possibly abolish patient forums when they have only been going for 2 years? They say, our body CPPIH, say we have reached the third anniversary we have only been going 2 years its ludicrous. I would like to ask a general question. Is there anybody else here who is on an ambulance patient forum? No I know my colleague was supposed to come from Hampshire but he’s obviously not made it. So I am a lone voice. Really our main problem is how the hell are we supposed to relate to LINKs organisations, whatever they may turn out to be, and the Government doesn’t know what they will be because they have not even thought about the details yet, but how can we actually relate to LINKs. We had a meeting in Newbury a few weeks ago, which was organised by our forum support person who is going to be running this in future, and she gathered together I think about 22 representatives from 4 county authority and 9 {inaudible} for health. How is a patient forum supposed to link into them? I rest my case.

DR RICHARD TAYLOR: May I just, do you mind if I … only a suggestion really, at one meeting Rosie Winterton has made it clear that she believes that existing forum members should be involved in LINKs. I would have thought that across a county, you should be trying

Eileen Young: Sorry Doctor Taylor we’re talking 4 counties. There are about 15 of us. Now we have become one forum, 4 counties and 12 communities each of which have their own health scrutiny committees. So its not solvable it doesn’t matter how many times Rosie Winterton bends her mind to this problem she’s not

DR RICHARD TAYLOR: Am looking at the relatively easy picture where we have gone from 3 PCTs to one PCT in Worcestershire, and certainly the chairs of the PCT forum and the mental health trust forums are talking in getting together about the future. And if that is practically possibly, obviously with you have got a nightmare scenario

Eileen Young: Exactly but you talk about your local ambulance trust forum Worcestershire it doesn’t exist any longer, its probably the West Midlands one with a similar problem, umpteen health scrutiny —

DR RICHARD TAYLOR: I do agree with what you said about the reorganisation we’re now on about the 35th reorganisation since about 1980 its utterly ridiculous.

Martin: Any more questions specifically about the process because we’re entering the process? There’s clearly stuff going on in the Conservative party, somebody mentioned health watch which I think most of the group think looks quite interesting. It’s the first time the Conservative party has produced anything so interesting in living memory {laughter} as far as health policy is concerned. But that then means that there will be a political debate. The Tories will want to have a debate about this section of the local government bill


Martin. Because they have now got something to say


Martin. One of the other things to bear in mind is the Labour Party feels it suffered quite a lot of unnecessary damage over the abolition of community health councils which, as far as anybody can tell me, were abolished because of Alan Milburn’s local concerns. There certainly was no coherent explanation about why CHCs should have been abolished or what was going to replace them. And the Labour Party took a lot of quite unnecessary flack -I think most MPs would agree, most of the Labour MPs do not want to go there again. They are quite aware that in every constituency, there are quite a lot of patient forum members who are pretty pissed off about all this. Its quite a good time to go and see your MP, and say what you think. And one of the things that I think more than anything else is that what we do not want is some deal cobbled together at midnight as happened in setting up the patient forums. In order to get a bill through the House of Commons deals were done by people who most of whom did not know what they were talking about. That’s why we have got the mess that we have now. What we do not want, is to come to June or somewhere, the point when the Government thinks this bill has been in front of the House of Commons quite long enough its time it got passed because presumably the Local Government sections are quite important, they don’t want to be delayed for yonks. We do not want a deal cobbled together at the last minute, that nobody can make any sense of because if we get that we will get an unworkable mess which we will be on the receiving end of. That is the most important thing to say to your MP. That whatever we have, we need to have some coherent plan for what is going to happen to public patient involvement that those involved believe can be made to work.

The good thing I suppose about where we are with the LINK debate is that the Department of Health are resolutely refusing to say how they think it will work. Well deliberately. It’s not just that they don’t know; they want to leave it to people like us to see what we can make of this idea. Its quite the opposite of what happened with the patient forum where they set up the quango full of the great and good to pontificate about how it ought to be done and the rest of us were on the receiving end of the instructions. And we still are – most of us.

NEW SPEAKER: We have had no support

Martin. Exactly I am not talking about support. I am talking instructions. Its not same as support. So let’s have couple more questions? Ruth, people who have come a long way get extra bonus points.

Ruth Marsden: I chair the patient forum for the Hull hospitals. I see behind this a deeper issue of fundamental corruption of toxic proportions that we are told that patient and public involvement is an offering to permit transparency openness and accountability, and the very Department (D of H) which makes claim to legislate on PPI is the epitome of a dept which fails to practise it with any credibility. This is the ultimate corruption.

Harry Chandler: Southend-on-Sea south-east Essex forum. Having heard the argument this morning, a particular point I would like to put forward to Richard is it not possible to say this is not an appropriate bill to have a clause 11 in at all, this particular clause 11, and how about the committee recommending its kicked into the long grass because frankly to argue about bits and pieces its not what this meeting is saying. What this meeting is saying today is frankly patient forums have not been effective. They have not been the success people would have hoped but what we’re after is the patient forums being strengthened and the social care part of the additions we all regard certainly in south end and south-east Essex as being pretty vital anyway. We get more complaints about social care than we do about the national health service these days. And if Richard’s committee can do something here we would appreciate it. One of my local MPs is a colleague of yours David Amess. We have spoken to David in this particular area. The worry we have is that David has a lot of other pressures as well as the National Health Service pressures, but what we would simply like to see – let us sort at the local government bill to start off, with the patient forums for the time being carry on as they are, then bring forward another bill later on about patient forums.

Jane Turner: from Kensington Chelsea. We are another early adopter project. We had our first meeting earlier this week, no last week, with our local authority and PCT trying to work out how on earth its going to function. 3 major things came out of that. First of all, there is no money. The local authorities apparently are expected to fund the host for the EAP initially out of their own funds. Money is like in 2008 but not until then. The secondary problem is that we heard from the Department of Health that they don’t want PPIFs to be involved in LINKs which seems absolutely ridiculous. Our PPI F has been exceedingly successful. And the third thing that worries me which had been said before, is who the host organisation who’s going to organise, has got to be chosen so that they are not anything to do with service providers, and possibly don’t even know much about the borough. This in the whole thing is so badly organised, that its ridiculous. And I do hope that this will be flagged up in the select committee, and shoved under the Government’s nose.

DR RICHARD TAYLOR: Only one thing because I think Allison is going to answer some of these things in detail. Just to take up the point from our friend from Southend: we do have a private meeting with the health committee this Thursday. The thing that affected the Government on the anti-smoking bill, smoking in public places was an amendment put in by the health committee unanimously. I will have a go at persuading the health committee to put in an amendment to remove this clause from the bill. I doubt if I will be successful but I will speak to one or 2 people beforehand see if I can get some support. Because if I simply myself put in an amendment, I don’t think it will get very far but if we got a sort of formal amendment, so depending on what the chairman has found out about the programme of events, I will try to get that discussed.

Martin: Okay I you know lot of people have still got questions but I think we ought to have a break, apart from anything else our typist is going to get typist fingers or whatever typists get. Coffee has arrived so we have a break for ten or 15 minutes, then Alyson will do her stuff. {Break}

MARTIN RATHFELDER: Right ladies and gentlemen let’s resume. I am sorry that the coffee disappeared just at the vital moment, there’s obviously been some lack of communication between me and the providers of coffee but there will be some more later for those of you who are addicted.

Very pleased to introduce Alyson Morely, someone who I have known for quite a while and I think she better start off by telling you a bit about the Democratic Health Network. It sounds like a good idea, and I suspect most of you don’t know as much about it as you should do, but if we go down the road that the Government clearly intends, then clearly we will have to learn a little bit more about how local government works and its relationship to health services.

ALYSON MORELY: Thanks very much, good afternoon, almost good afternoon now to everyone. I should say lots of your faces are familiar, there seem to have been huge amounts around this issue over the last 3 months or so which makes it all the more disappointing how little we know about patient and public involvement and LINKs. We have had many opportunities to meet and discuss these issues, and yet the proposals are well – its almost like a string vest. It’s more holes than anything else.

Before I go on to talk about that I just want to tell you about my organisation. I am a policy analyst with the democratic health network which is a membership organisation. We have about 150 members in membership but they tend to be institutions. We have local authorities, the NHS, voluntary organisations, actually the CPPIH are also members. We have some forum support organisations are members. We have trade unions in membership and academic institutions. What we do is provide policy advice, briefings, conferences publications very much from the lay person’s perspective round health issues. Because I am sure you are all aware that policy initiatives come thick and fast in the NHS and if I add them all up – we provide a briefing service – if I stacked up all the documents that I provided briefings on they would probably come to about this high. We try to condense those for people like patient forum members, elected members, others who are busy people who need to know the basics. So that’s my organisation. That’s what we do. If you want any more information about the Democratic Health Network, you can have a look at our website which is I am ashamed to say I have not put it on any of my slides its . So have a look at that if you want to know anymore.

What I am going to do is – Richard talked about Parliamentary process, and where we are with that and the opportunities to influence. What I am going to be doing is to try to fill in the practical bits. So this is my presentation outline. I will just skim over the bill because even though, as Richard said, this has been shoe-horned into a local government bill. Actually even though at this a really unsatisfactory arrangement, there are other bits in the local government bill that could have a very important contribution to health and having LINKs in that may actually be quite important cultural changes in the way that LINKs operate. But I will take you through that.

I am also going to look at where LINKs possibly fit into the picture on the ground in reality, in the local area where they fit into all the decision making, commissioning structures, democratic accountability structures. I am going to talk a little bit about the role of local authorities, and initially Martin had asked me to talk for my presentation to be about roles of the local authorities, but there’s so little in the bill that I felt I couldn’t really spend about more than about 3 minutes talking about that.

I will then talk about challenges and opportunities that the LINKs represent. I think you will notice there are more challenges than opportunities at the moment. I will finish up with what now, Richard said to me, what now, is really important: lobbying. Making your voice heard is really important at the Parliamentary stage but that will continue within when implementation comes along.

So what’s in the bill then? As Richard said the Local Government Public Involvement In Health bill. LINKs remit corresponds with PCT local authority boundaries. I know a number of you particularly in local authority areas, such a great emphasis on commissioning now rather than providing, actually patient forum as they stand would become increasingly outdated and irrelevant. Whatever happened, patient forums would have to change in some way. As I said there would be a greater focus on commissioning. Now commissioning is still the great unknown in the NHS. I have written several policy briefings on commissioning but actually its an incredibly complicated. Its a complex process involving needs assessments, priority setting, assuring best value for money, audits, procurements, contracting, monitoring and actually its not just a one stage process. The idea that LINKs and public and patients should have an input a positive input into that whole process is the challenge in itself.

I think we would all welcome the fact that the LINKs remit will be extended to social care. I’m sure a lot of you, one of the thing that PPI forum members have said to me it’s frustrating in their job often its not the services provided by an individual institution that are the problem, its the barriers between them. It’s things not matching up. It’s the inability to be able to follow the patient pathway. So I would say that is very welcome that there is an opportunity for LINKs to follow the patient pathway in a way that currently PPI forums can’t do.

Again we have heard its a loose network open to all, individuals and organisations. Richard said, Meredith Vivian, I am sure you lot of you know the PPI lead for Department of Health, He envisages a thousand people organisations or whatever being involved in the local LINK which in itself creates huge problems about how you reach a decision, how you reach consensus. Can you reach a consensus in your line, your view, and your response to consultations. And also there’s the issue about – is everyone equal in a link? If you are the chair of a large voluntary organisation, are you equal to someone who is a carer of one individual? And there’s the question should you be? Is it a good thing you are equal? There will be those discussions about the equality and the playing fields.

As we have heard from Martin and others we know nothing about structuring and accountability. This all to be locally determined. This is, it’s up to us and I think often its very empowering to have a blank sheet but it can also be incredibly intimidating as well. You usually have some sort of lose framework on which you can develop, enhance, adapt yourself. We don’t have even a loose framework at the moment. I think that is a challenge in itself.

The big if, how will LINKs be resourced? We have already heard that at the moment the 8 early adopter sites are not getting any additional resources to develop

MARTIN RATHFELDER: That’s not quite true. We’re not getting money. We’re getting two people from CPPIH. I am not sure whether we want two people from CPPIH, but that’s what we’re getting.

ALYSON MORELY: The early adopters sites will be getting some resource, no cash, to develop this good practice in advance of LINKs being implemented across the country. We know because it’s on the face of the bill that local authorities will be funded, local authorities will have a duty to procure local organisations to set up and support LINKs. We have heard from the Department of Heath they will have funding to do this, but that funding won’t be ring-fenced? There will be an earmarked indicative amount of money but it won’t be ring-fenced. Some local authorities are quite good at providing community development voluntary support, capacity building money for their voluntary sector specially round social care. They are already putting that money in, they might actually turn round and say we’re doing it already. So this money is simply is reimbursing is what we already spent out. The community involvement team can support the link if they are outsourced to another agency. It will not be ring-fenced. That is an issue for you locally. I am speaking from someone who largely talks from a local authority perspective to keep a keen eye on your local authority, and the indicative money that is given to that local authority to set up LINKs.

MARTIN RATHFELDER: Can I just ask you a technical question: when you say that’s an indicative amount, does that that we will somehow know how much it is for our local authority?

ALYSON MORELY: We don’t know yet. We might know, with some local government finance, I am certainly not a local government finance expert, there is. Although the money isn’t ring-fenced for a specific person there is an indicative amount to say I have X amount, that’s what it’s for but they don’t have to necessarily spend it on that. There is often an indicative amount, it’s giving an undertaking that local authorities will get extra money. Host organisations maybe existing forum support organisations but we don’t know. We know that the local authority can’t keep that money for themselves in house, because there have been quite clear commitments for that not happening. But we don’t know, I mean if they are already funding organisations to provide community development then they could actually do that.

There’s also no guidance whatsoever on how members of the LINKs will be recruited or whether they will be, or inducted. As we all know the health policy landscape is constantly changing, fiendishly complicated, and its a real headache to get your head round. So the idea of having up to a thousand LINK members who would all come from completely different perspectives and have different level of knowledge and expertise about the health arena will be a challenge. And how they are going to be supported and developed? Because to represent your local community, with the Health Commission, and the overview and scrutiny committee, to maybe the council, to the local area agreement or the local strategic partnership, takes skill actually and how those skills are going to be harnessed?

Contribute to shape and quality of health provision, because that what it says I think in Our Health Our Care Our Say. That’s an incredibly all-encompassing phrase – that they should have a focus on commissioning, so rather than the provision of care, they should be involved all levels and make a positive contribution at all levels and stages of the commissioning process.

NEW SPEAKER: Can I ask you a question on the first line, contribute to shape and quality of health provision does that mean health service provision?

ALYSON MORELY: Not necessarily.

NEW SPEAKER: Because that’s something I would wouldn’t have thought.

ALYSON MORELY: In terms of health provision I have taken that element verbatim from Our Health Our Care Our Say, but LINKs will also have as you know responsibility for social care now. So its health and well being provision actually. They can still comment on service reconfigurations, Again there’s a question of how specially if they are covering a wide area as we all know specially Our Health Our Care Our Say, which proposes a move from hospitals into community and intermediate services which will inevitably lead to closures, that is one of the explicit commitments of Our Health Our Care Our Say is that some hospitals will close. And some treatment will operate from community alternatives. Then there maybe real difficulty on a county wide basis to get any sort of consensus from a thousand plus organisations, in very different geographical areas, about the merits or otherwise about that consultation. So it might be very difficult with the new LINKs for them to have a consensus view to put to the NHS about certain things. We also hope they will have a close working relationship with health overview scrutiny committees. Some of the partnership have been incredibly scathing about their local overview and scrutiny. I would say in fairness to the overview and scrutiny committees they are very varied bunch. Some of them are very good. They work very closely with their PPI forums. They have joint meetings. they have co-opted PPI members on the overview and scrutiny committee. They help set the agenda but it was interesting actually when Richard was talking about the resource at the disposal of the health select committee that you have several members of staff. In most local authorities they have one person working on health overview and scrutiny. They usually deal with many other committees as well. Their support services are pretty limited in most local authorities. I have used the dreaded “I” word which Richard said we must never use again in relation to link; I expect I meant visits. They have the power to visit NHS premises but not private and independent providers and do you know what Government have said about the increasing diversity and the marketisation of the health service, that is an issue that there will not be a level playing field. But we’ll talk about that later.

I also wanted to say something about other provisions in the bill. As we have said this is not a health service bill. It’s not even a patient and public involvement bill, its a local government bill, but there are other relevant provisions that I think could benefit LINKs. I am not wholly depressed within the local government bill. I have to say in fact that I think the chances that if it wasn’t in the Government bill there wouldn’t have been any legislation and I think that is what the Government and the timetablers were worried about, that if they didn’t get the abolition of CPPIH and the PPI forums into this then it wouldn’t happen. Which I know some of you would think that that was actually a very positive thing, but that’s why its in the bill because if it wasn’t here it probably wouldn’t be anywhere.

But the other provisions that could be really helpful to LINKs is, there’s a whole list in the local government bill, there’s a very long list, about 40 different organisations. They include PCTs, Learning Skills Councils, police authorities, parks authorities, water authorities, they are all partner organisations. These partner organisations have a duty to agree local area agreements which are the higher level strategic priorities and agreements for the local area. That will be around fear of crime, educational attainment, health qualities, teenage pregnancy, – high level strategic issues which no-one agency can solve on their own I think its really important that that is something that LINKs could possibly have an input into.

They also, could take advantage of the community call for action. I don’t know if any of you are aware of this? There is now provision in the local government bill round community call for action. Its actually already exists in some form in the police and justice bill where local people can, its basically a sort of form of petitioning, where local people if they are not happy with as they did in police and justice bill with crime and disorder strategies they can petition their local council or any councillor to take action on an issue. This has now been extended to all provisions in all areas of local government and other provision. So if you were not happy about the way your council and PCT were commissioning health and well being services or you weren’t happy with a particular health service, you could petition – you could create a community call for action. And that would mean that your local councillor would have to act in some way. So they would have to take action. They would have to either approach the PCT the health body or they could take it to the overview and scrutiny committee. Some of us believe this is probably what they should be doing anyway but it doesn’t add up to much but it does formalise that front line councillor role. There is a possibility for LINKs to actually engage with their local councillors to ensure this. Also local authorities scrutiny function has been extended slightly. You know that local authorities have the power of health scrutiny, that enables them to call witnesses from PCTs and other health bodies and also to request information, and also to ensure that health bodies respond to their reports. This power of scrutiny will be extended to other partner organisations as well. As this is slightly technical, as it relates to their action on local area agreement priorities. So again its something that LINKs could link into it. I don’t know whether all of you are aware of section 242. What used to be section 11 is now section 242, local authorities are going to have an equivalent of section 242, they will have a duty to consult.

But as in all legislation, this is all very much sketched out, its very little detail, we don’t know how it will be implemented. In a lot of things implementation is the key.

So where do LINKs fit in with all of this? The Government increasingly is seeing health provision as part of a sort of, that that should be part of the local area agreement that the local area agreement are high level prior this so rather than fiddling with process, that actually there should be a high level multi-agency group that is trying to get their community healthier, safer, more educated, better employed, better housed in a safer environment. That all public agencies have a responsibility in all of those areas. So how does LINKs fit into that?

Well, yes this is what I think actually {laughter} I am not going to take credit for this. This is what we think the new structure will be. I am not going to take credit for it. It’s been devised, – it looks fiendishly complicated but I think it’s a reasonably good diagram as to where LINKs could fit in. This has been drawn up by Mona Segal who the recruitment and development agencies top policy officer. What she has tried to do is to make sense of this jumble of new initiatives and structures and LINKs are very firmly here so they can feed into practice based commissioning, and these dotted arrows needs further development. There’s a potential for them to fit in, but at the moment we don’t quite know how and again a lot of this will be up to local agreements, that is local government trying to work out what national Government means by all their strategies and white papers. So we have LINKs here, they could feed into the practice based commissioning perhaps. We have not actually talked about practice based commissioning yet but potentially that is a real headache for PPI forums as they now stand – let alone LINKs. If commissioning goes down to practice level, so you have a county or an authority wide LINK but you have many different GP clusters all commissioning different things, how can LINKs possibly feed into that commissioning process? Its actually very challenging.

Then we have the feeding, coming up here, one of the things that was dropped out of the local government bill that was in the local government white paper, was that all local government areas should have a health and well being partnership board. And that should sit under the strategic partnership. It has now disappeared, although most areas will have a health and well being partnership board, they don’t actually have a statutory responsibility to have one. But we are trying to encourage local government to have this.

So LINKs could possibly feed in up here as well. So, of course local people feed into LINKs. And there is a possibly an arrow missing there. You could have LINKs feeding into community calls for action. Another area that we miss out on a lot, is the role of lead members of the executives. At the moment, most of LINKs relationships and activities have been with the overview and scrutiny committee, but actually the lead member for health is an incredibly important person in trying to get patient and public involvement embedded in everything that is done in relation to health. So that is a rather confusing, but could be much more confusing diagram as to whether LINKs might fit in the new system. And its all very much if we don’t know whether it will be the case.

Now this is entitled the role of health overview and scrutiny committee but actually its more the role of the council in relation to LINKs and what the council can do encourage and support LINKs. Its fair to say that cooperation between PPIF and OSC have been very patchy. I know that some PPI members are incredibly jaded about the overview and scrutiny committees. They may feel that they don’t want to talk to them. They are in fear of clinicians. Actually they don’t do anything very much. In some areas actually I think that they are really a very powerful force for change. And Manchester University have been given a contract to do an evaluation of the impact of overview and scrutiny on the health service and it conducted a general evaluation survey last year, when overview and scrutiny has only been running 4 year and a bit. They asked the NHS whether overview and scrutiny add made any difference and I think somethinglike 60% of cases the NHS responded and said yes, it had made some difference in terms of them as a result of overview and scrutiny had to make some changes to either policy, practice or procedure. Now we don’t know the extent of those changes but its making some changes so, I don’t think we should write off overview and scrutiny.

NEW SPEAKER: Is that survey available anywhere?

ALYSON MORELY: Yes its on the Centre for Public Scrutiny website. What we need to do; clearly we need to build on this. We can’t accept the average. We need to build on the best and push for improvements. I work very closely with an organisation called the Centre for Public Scrutiny, that was given £2.25 million by the Department of Health to encourage and develop health scrutiny in local authorities. That money is coming to an end in April 2007, so in a little over 3 months. But there is a lot of good practice out there. What we need to do is ensure that the game is raised for good practice. And in every single case where there is a well performing OSC, they also have very good strong LINKs with their PPI forum. I don’t think you can actually do overdue and scrutiny well if you don’t have a good relationship with the patient public forum. We have heard that local authorities will receive funding to procure host organisations for the LINKs. That will not be the over view and scrutiny committee in fact the Department Of Health have said they don’t want it to be anywhere near the overview and scrutiny committee. It will be somewhere within the local authority, but currently we don’t know how that will be.

We have said a lot of this is going to be determined. So challenges. I should say challenges and opportunity, but how many of you were at the getting ready for LINKs conference on the 13th of December? There were workshops at that conference about identifying the obstacles and the opportunities for LINKs. And I simply scribbled it down, this not from me its actually from PPI forum members like yourselves

Society challenges are accountability, how do you ensure accountability, Harry Caton who’s from the Department of Health is responsible for patient public involvement in some way that Meredith is not,

NEW SPEAKER: There’s only 2 people involved.

ALYSON MORELY: He said he was quite clear at that meeting accountability should definitely be downwards in the community. If LINKs are not accountable to communities, then they are not doing their job. I think I asked that’s very laudable but how on earth do you ensure that? Actually the department didn’t know. No-one really knows at the moment. How you ensure accountability down wards to the communities.

NEW SPEAKER: The department itself should be accountable down wards if it wanted to

NEW SPEAKER: It should practice what it preached more.

ALYSON MORELY: Its quite important to make the distinction between a Government civil service department which is there to implement Government policy and actually LINKs which are meant to be bottom up organisations. So I don’t think we should say department doesn’t operate like that, because they wouldn’t because they are a Government implementation.

NEW SPEAKER: Hey that’s not right not whether or not Government says we’re here to listen, listen is our mantra, taking a platform with that.

ALYSON MORELY: Take issue with the Government, the civil servants I think they have really rough time in all this because this not

NEW SPEAKER: Don’t defend them!

ALYSON MORELY: I think that I am sure some of you who know Meredith and Harry will know how incredibly committed they are to this and they have tried incredibly hard but there are huge tensions within the Government between ministers, round what should be done. I mean

NEW SPEAKER: Take politics out of the health service we would all get on a bit better.

ALYSON MORELY: Well what I am trying to do is just raise the challenges. So if I could just go through this: resources – will they be adequate? Well we don’t know. We don’t know what they are yet. We know they will not be ring-fenced but we have no idea whether they will be adequate to support this vast new network. Geography: it’s going to be very, very difficult for LINKs to operate over large geographical areas, and there will need to be some, just in terms of getting together, the department have talked about the different sorts of the things, and maybe it will be a virtual body that will only operate through email, in other areas they will have shop fronts somewhere. You need somewhere between the 2 models, I don’t think an organisation which only exists virtually will ever come up with any sort of consensus or real profile of the community.

Capacity and expertise, I know that a lady there said that in Kensington and Chelsea she hat been told that PPIF would not be anywhere near LINKs, what I have heard elsewhere is that certainly LINKs should build on the best of PPI forums. What I have heard is that there is real encouragement for existing PPI forum members to be part of LINKs, but shouldn’t be all of it. The idea for LINKs is that they should be wider more and inclusive than PPI forums currently are. But what do they do? I mean if you need to give someone, for people to become involved they need to have something to do. They need to have a purpose, and we have been told by the DH, that their purpose will be to influence commissioning but they will need to understand commissioning in order to do that, and I think LINKs will need support in order to be able to understand the commissioning process and where they are going to make most impact in that.

And another issue is credibility. They need to have credibility with the community, and also with the NHS as well. I have to say a lot of people are shaking their heads these are not my points they came from a meeting in December.

Well in any case so you are completely clear about where these points come from? they come from the workshops from the conference and the workshops that were attended by PPI forum members. Its not my work.

More challenges around ensuring that no-one interest group dominates. We talked about are people equal? How do you know what interests people have, for example a voluntary organisation can be many things nowadays. They can advocate on behalf of people with particular conditions. They can be fairly substantial service providers. They can be lobbying organisations. How do you know which hat they are wearing? Specially when there are local authority and NHS contracts up for grabs. How do you know who they are acting in the interests of?

The relationship between LINKs and NHS foundation trusts. I mean Richard talked about the health select committee split in their view of foundation trusts and I think a lot of us are still very unsure of whether foundation trusts are this marvellous success story in terms of ensuring democratic accountability in the NHS. And I think a recent Audit Commission report )or could have been the healthcare commission report) about foundation trusts, remains pretty unconvinced that the membership had anything to do with day-to-day decisions of foundation trusts. That actually it had not led to more democratic involvement. There have been cases where foundation trusts have been very loathe to provide information to overview and scrutiny committees because of commercial and business reasons. So there is a real issue about the business imperative of foundation trusts and the extent to which they are open to LINKs.

Again we have heard the lady very eloquently there about how difficult it will be for LINKs to have relationship with some regional and sub-regional services such as ambulance trusts. There are also other issues for sub-regional specialities, it will be very difficult for LINKs to be able to have an input into. And I have to say I think the biggest challenge that LINKs face, but its exactly the same challenge that PPI forums and before them Community Health Councils faced and that is that there is this rhetorical commitment (it’s more of a prominent commitment now) to putting patients and the public at the centre of the health service. In every Government document you read about the health service it’s patient centred care, public accountability, E voice, choice, strong local voice. But actually when it comes down to it PPI is generally pretty marginal in terms of its decision making. It features absolutely nowhere on the business planning. So I think there’s a huge, huge challenge there to force cultural change within the NHS.

NEW SPEAKER: I think there’s a huge challenge for volunteers, we’re talking about 4 to 6 hours a week. That is growth, I am a vice-chair, I think the challenge should be how far can you stretch volunteers?

ALYSON MORELY: Oh no I totally agree with you. I think there are real capacity issues. There are huge capacity issues. Also the idea that these thousand, if you have a thousand people in the network, that then spreads the load. That’s, inevitably that’s not going to be the case, you will have some have to have some sort of form of structure where you have a more active membership group. And yes, there will be real problems I think.

NEW SPEAKER: Alison I have to say I reject this line with the Government and the commission that PPI has been so in effective. I think this is a trail to lead the fox in the wrong direction I really do.

ALYSON MORELY: That’s an important issue. I think that actually there are real problems with PPI forums. I think part of those problems are not of their own making. Part of them is problems, the inevitable problems, teething problems with any organisation that has just been set up, that its staffed completely by volunteers that have varying degrees of support. In some areas of the country, forums support organisations are excellent, very, very good. In other areas of the country, they are terrible. So I think PPI forums, a lot of them, have done an incredibly good job, and they have a very difficult job to do. I also have to say, that 2 years is not long enough to give any organisation. In any case is still not a long time to actually prove your worth. I am sure you all know that restructuring take hugely long time to bed in, but I do think whatever happens PPI forums will have to change being an institution based organisation is becoming increasingly irrelevant in an NHS that is become far more marketised, far more diversified. I don’t agree with that change. I don’t agree with that change. I think it poses huge problems for democratic accountability but it’s a change that the Government are absolutely committed to. I know that the health committee have said many critical things about that change, and that there are critical voices there but the Government is absolutely wedded to the fact that the provision of care is going to be much more diverse, much more marketised, far greater penetration by the private sector, by independent companies, even by the voluntary sector. So whatever you say, PPI would need to change to deal with the change in the health environment.

Ruth Marsden: If you look back at original legislation which empowered forums, it allows and specifically empowers forums to follow any NHS patient having treatment anywhere, whether that is established as a PFI hospital private dentist, establishment if it’s an NHS patient forums can follow the patient

ALYSON MORELY: But do they do that Ruth? No


ALYSON MORELY: Now, I am going to go on to the opportunities. And again its opportunities that were raised at the conference on the 13th of December. A number of people said that the establishment of LINKs will allow a wider range of organisations and people to become involved in the whole patient and involvement structure. I was saying to someone in the break that I think this is a continuing challenge. I think for patient public involvement, I am sure Martin himself will acknowledge that even though we will fondly look back at CHC, at their very, very best they only had something like a 15% recognition factor with local people. In the worse areas, less than 2% people knew what a CHC was. This has always been a challenge, this has always been a challenge. Its been a challenge for 40 or so years and we are not going to solve it overnight.

The idea that LINKs will suddenly be able to involve many more people, is pretty optimistic but certainly some of the PPI forum members there thought that it would encourage a wider range of people and organisations to be involved. It would be able to follow the patient. Ruth was talking about following the patient journey, and this is what PPI forum members said they couldn’t do at the moment. That they will be more easily able to follow the patient journey and specially between NHS and social care.

They will have a role in influencing commissioning, to make sure it’s more patient centred. As we hear a lot about patient centred policy but actually the reality is often very different from the rhetoric. If LINKs are there in the beginning of commissioning, in terms of assessing needs accurately, determining local priorities, then looking at the way services joined up and are delivered there’s a much better chance of them being patient centred.

Its striking that out of that there was a list of this many challenges and this many opportunites, but one of the issues, there was a very strong feeling at that meeting that me need to capture what is good and strong and powerful and influencing about PPI forums and we should build on that.

NEW SPEAKER: Sorry if that’s the case, how do you justify in the LINKs structure bringing together individuals with organisations because the organisations have an agenda, where as the individuals are the people who are .

ALYSON MORELY: Sorry I am not justifying it. I am not speaking on behalf of the Government. I am not speaking on behalf of Department of Health. What I am trying to do today is convey to you what the Government intends by this, and also some responses by PPI forum members. I don’t know, I raise this myself as a challenge, how does an organisation operate that has individual carers and large organisations that stand to make millions out of contracts. I have raised that already as a challenge, I completely agree with you on that.

Embedding patient public involvement into the planning of health social care that was something that several of the workshop groups said are really, really important opportunity, and I think they also felt it would be a huge challenge but it was an opportunity to do this. And another area was influencing local area agreements. So looking at the detail of what goes on in health institutions but also looking at the more strategic level as well, what do we want from our community, how do we ensure a health and community that is healthy, that has access to services.

What now? We have heard about the early adopter sites, and at the moment the CPPHI are facilitating the early adopter sites. They have undertaken to collate the good practice coming out of the early adopter sites. There are only 8 of them and they don’t have any resource. To do this but we hope that the good messages coming out of the early adopter sites can be used by other LINKs to actually inform their practice.

Lobbying and influencing – we have heard from Richard about the health committee, and the local government bill, but there’s also lobbying and influencing the Department of Health as well. Because as you heard, they put a great deal of time in looking at this, and came up with very, very little its inevitable that eventually there will have to be some national guidance and standards. Its incredibly difficult to build a framework in a vacuum. We need the building blocks there, maybe to be rearranged but you need something there. You need good ideas; concrete proposals if you think you know how this works in your area let the Department of Health know. Because a lot of it is on the face of the bill. A lot of it will be about implementation.

And again building on current best practice from what’s happening locally. In some areas there very good relationship with OSC and PPIFs, they work incredibly closely together. If that is a fair reflection of what goes on locally in your area then try to build on it. If its not we really want to try to find areas where its working well. And also it would be really helpful to remind the department of its commitment. Meredith made a specific commitment at that conference on the 13th of December, to provide regular updates. I think they said every 2 or 3 months to have a meeting, a conversation with people like you about how things were developing so its really important actually to lean on the department, “it’s one and a half month now. When is the next meeting to discuss where we go from here and get our feedback?” And I also say locally its incredibly important to have some level of formality about how things work. Terms and conditions, terms of reference, codes of conduct things, declaring interest, how to be a member of LINK, who can be a member of LINK, can anyone be a member of LINK, how you make decisions, protocols with overview and scrutiny committee and PPI leads in the PCT about how and when and why and to what extent LINKs will be involved and included. I would just like to leave it there. Finally, just to emphasise that I agree with you. I think a lot of this is incredibly unsatisfactory, and I have to say I do think PPI forum members have been treated pretty damn shabbily in all of this. As someone said, you are all volunteers. your workload has increased exponentially, you get no pay even though the department say we pay tribute to marvellous members the thanks you get for all your hard work over the last 2 or 3 years is to be abolished. And that I think is pretty shabby, but I would say that while you are still here and PPI forums will still be here for a small amount of time anyway. The timetable is the bill’s likely to get Royal Assent by the summer of 2007, so PPIFs are like to be abolished by the end of 2007. The first procurement of local authorities to procure host organisations will be round the end of 2007, early 2008. The first LINKs will be formally set up at the end of 2007, early 2008. That is the timetable that the department is working to at the moment. Having said that obviously its a movable feast because it a small part of a very large bill. And it’s not possible to plan Parliamentary timetable down to the last detail. If there are other bits of the bill which are incredibly controversial then the bill may not receive Royal assent until October or November in fact so we don’t know how this will play out. There is still time for you to have some sort of influence. Clearly there are a lot of you in the room who feel incredibly angry and disgruntled with the Department of Health. I completely understand why. I think with that I will stop talking and leave you to discuss.

MARTIN RATHFELDER: Thank you very much. {Applause} now Alison is going to run off and do whatever Democratic Health Networks do – probably open the post. So I don’t want people to spend their time grilling Alison as if she was responsible for things which she has told you about. There’s no point shooting the messenger. What I am particularly interested to get out of Alison before she’s runs away, is anything about the way in which local government works which might or might not be something we need to take account of if we’re going to express views about how we think LINKs might work or not. I am going to get my question in first because that’s one of the few advantages I get from being here. In Manchester, our scrutiny committee is run by the Liberal Democrats who are the opposition. It’s not really very effective as far as I can see. We do have some staff. We have a joint health unit inside the Town Hall which I think the health service pays for in some way. So they do get some information. But they don’t appear to be very challenging. Now that maybe because they are perfectly happy with what the PCTs and the hospitals are doing, it might not be. But the bit that worries me most about giving local authorities and scrutiny committees a role,- the scrutiny committee is clearly a political institution. It depends on the composition of your local council what will happen there. There are still places where there are 97% Labour seats on the council. There are no doubt other places where there are 97 % Conservative seats on the council. There its it seems unlike whatever happens there will be much real argument in the scrutiny committee about what crap services the council provide because all the members will be more or less loyal followers of the leadership of the council. In other places where its not so clear then clearly a local politician can make waves by going on the scrutiny committee and stirring up trouble and in some places that happens. What do we do about that?

ALYSON MORELY: Right okay I agree I think that’s, that has not been so much an issue in health scrutiny because most health scrutiny is externally facing. And actually councils have a fair degree of autonomy about how they set up scrutiny committees. So in some councils the majority party has the chair, in other councils they have taken a principled decision to give the chair to the opposition. I have to say that is happening less and less now because of the political instability in a lot of councils. The reality in many councils now, its an increasing trend, is for there to be no overall control. In those sort of situations you get incredibly tight whipping. In the same way that Richard was talking about whipping of bills you get exactly the same sort of whipping and discipline within local government. That said, explicitly overview and scrutiny committees are not allowed to be whipped. That is not to say that they don’t follow a party line. So I agree with you there is an issue about the level of independence that overview and scrutiny committees have, and some have been much more independent and vociferous and oppositional and challenging that others. But the official line is they cannot be whipped.

NEW SPEAKER: Thank you. Way back in 1974, when there was a major change in local government particularly at district and borough level, there was a shadow authority elected for a while. Local government work there we had some sensible ways of doing things getting transition before they took office. In schools, governing bodies if they are changing in a major way they have a shadow Governing board when the Community Health Councils were abolished there was no such shadow, on the contrary there was a gap between when they finished and we started. It looks as if that is going to be repeated. It looks from what you just said Alison as if forums will be abolished before LINKs get going.

ALYSON MORELY: Will be a little bit

NEW SPEAKER: You said the dates you said was the end of forums end 2007, beginning of LINKs and their support 200708 that to me is not an overlap its a gap. I think one of the thing we should be pushing if change is going to take place, let’s have a sensible transition with some overlap, so we can have a shadow link for a while. Can we please put that forward in whatever, democratic accountability as a transition and an overlap not a gap. That’s what I think.

ALYSON MORELY: That’s that sensible in some areas, they chose to actually set up shadow PPI forums, but

MARTIN RATHFELDER: Rosie Winterton has been saying just that she wants to see patient forums become part of the link as a body.

Shirley Murgraff: City and Hackney older people’s reference group and also from city and Hackney non existent PCT PPI, and virtually non existent foundation trust PPI Hackney, – they really have not worked at all. So I just wish people by and large when they are making statements about things in their own experience if they would allow for the possibility that other people have different experiences. It’s no good getting up saying or shouting from the audience PPIFs have been successful. There have been lots of places where they have been absolutely totally useless for a whole number of reasons. Let’s allow for the possibility of things been other than their own direct experience.

Two specific things about Alison’s presentation which I would like to thank her for. But you have talked about the procurement of the support or host organisations is there any indication, guidelines, suggestion, hidden agenda direction that these host bodies have to be private sector bodies? That’s one question if you can come back to it, and also something that has been totally left out of the discussion. It seems to me when you are talking about the voice of the patient, the public or whatever, the way decisions are taken at board level whether it’s PCT board, hospital governing board or strategic health authority board, there is absolutely no voice for patients or public in and those boards. And I have experience of going to them including the new London SHA which is the strategic health authority not Socialist Health Association, the difference between the 2 despite their congruence of their initials. I have been told, “you are privileged to be here in the first place. This is a board meeting being held in public its not a public meeting.” Absolutely its not a public meeting I have necessarily found SHA PCT boards don’t and to be at a public meeting you can stand up and jump up and down at a public meeting it makes no difference whatsoever. What is important is being allowed to have a voice during those meetings, not waiting for 3 or 4 hours to come to end of the meeting which I what I have had to do and then say something which bears absolutely no relation because those are the places where the decisions are taken. And that’s where you need to have, now there’s no provision as far as I can see for LINKs or anybody else, to have obligatory mandatory representation on these boards. That’s where the decisions are taken. That’s where we need to be involved. Now I do just need because I wasn’t allowed to get in the last session, to make a couple of points.

I can give you some information about contacting your own MPs, I think this is really important as well, for me, what is a useful way because I actually don’t like writing letters very much. I ring the House of Commons out of hours, and its permanently personned that switchboard apparently 365 days/24 or whatever the expression is. You ring up out of hours you say can I get through Jamie Bloggs office please you get through, and you get the answer machine, and you can go on at great length and say what you like {laughter} and they have to get back to you. Its an input that you have made. And moreover I quite often do it on the basis of what I hear on the radio to MPs that are not my own. I hear other MPs like Kevin Barron the other day saying we have to accept reconfiguration. I could have shot him! Its not his job as chair of the health select committee to tell other MPs, which is what he was doing, because of this woman who went up and paraded outside the hospital whatever it was having a change of policy. I think other MPs, and ministers, but you have to ask for their constituency office not the ministerial office, give them a piece of your mind. That really works they really know how you feel. Its easier I don’t have to pay for my calls in the evening. It’s also cheaper. It doesn’t even cost you a stamp.

Just one very brief thing about this whole thing. I admire and accept people’s optimism but everything to me is set up to fail like it has been before. They don’t believe in consultation. They don’t believe in the public or patient voice. They don’t want it because if they did they would never have abolished CHCs in the first place. And why its set up if some very nice senior civil servant I have had the benefit of talking him at great length as well once or twice. He does listen when you ring him up this Meredith fellow. There might be a thousand organisations. CHC, I will be honest there were some really good ones I know they weren’t always good, they didn’t have a thousand organisations in. It was when it worked it worked. You don’t need a thousand organisations. They don’t want a thousand organisations, and by and large has been demonstrated we’re not going to be listened to any how. If that’s what they are talking about they want, or they are telling you they want all this involvement what they are saying is we actually don’t want this involvement, but nevertheless we do have to jump up and down, be on our mind make the trade unions do something. I think we can stop some of this stuff finally because MPs are beginning to feel a little bit vulnerable. That’s why its important to contact them tell you exactly what you think. The telephone number incidentally its 02072193000. You can ring up out of hours that the best way. March the third there’s supposed to be a large demonstration against the direction of travel of what the Government is doing to the National Health Service. If you have to crawl on your hands and knees in my opinion, and make other people do the same you have to be there. {Applause}

NEW SPEAKER: My name is Kail from Croydon PCT patient forum. I don’t necessarily share the pessimism as the last speaker. If you don’t have hope and faith in the future we shouldn’t be here. We have to work in the best interests of the public that’s why we entered this sort of scenario in the first instance. However my perception of listening to Alison, I personally feel that LINKs is an unmanageable ogre of size. My question was what you said earlier Martin was, how we link up with the local government services in that if we are so uncertain about the future of LINKs, how the hell can we go and ask questions? We can’t. Everything that you want to know, there’s a question mark. If you don’t know we can’t ask questions, we’re in a vacuum and I am not sure where we go from there.

MARTIN RATHFELDER: Well I know where I am going. I am going to try to set up a LINK in Manchester and if nobody is telling me how to do it I am going to set it up the way I would like it to be.

NEW SPEAKER: A thousand people that’s what they are expecting

MARTIN RATHFELDER: That’s one of the questions, how if we are go into involve quite a lot of people how are we going to do it? Are we going to have mass meetings in the Great Hall of the People? Or will it be something on the internet or.. Anyway we’ll come back to that. I want to spend this afternoon talking about how LINKs might work, and what possible ways there might be of doing it.

NEW SPEAKER: I am support officer with {inaudible}. We have recently gone in-house I found myself employed by CPPIH My question is about third a the way through your presentation you mentioned that local authorities will have autonomy on how they set up their individual LINKs. Does that mean that every local authority is going to have a different LINKs because that what it seems to me, there will be no defining framework for LINKs at all. Is that the case?

Roger Hewitt: I am a Consultant for SIGN which is the the Natonal Society for Mental Health and Deafness. I understand how LINKs is going to be set up, especially the gentleman said the LINKs will have its own strategy, the local authority will please themselves how they will set it up. Its vital for everybody to know that the facts that money will not be protected. My experience of the recent TEA report which is “Towards Equality Access” from the Department of Health, where they have put it in £1.4 million every year to PCTs to improve services for deaf people in local health. The money has not been ring-fenced, as a resul;t it has been lost in the system. So its I feel its vital that everybody is aware of this issue and we should campaign to make sure the money for LINks is ring-fenced. Sorry I need to clarify that. I am saying if its not about disability or anything, its about making sure that the money is given by the Government, to the local authority to make sure it is ring-fenced its so vital.

ALYSON MORELY: Just to go back to the issues about procurement of support services, the Department Of Health is going to issue a model contract for local authorities. It said it was going to do it soon. I look on the DH website on a daily basis. It’s not there yet. There will be some kind of model contract. All we have been told in terms of the local authority procuring that it can’t be internal. I can’t just say we have got a council worker who does a similar job they can do that. It can’t be internal. And there has also been some indication that it can’t be to an organisation which stands to benefit, that already provides a lot of services to the local authority. So that’s all we know but actually none of that has been, none of that had been specified in regulation or even been formalised in terms of the letter. There’s a letter to the local authority chief executive to tell them they would have to procure this but other than that we don’t know any more. So there is a good chance the private sector could actually be one of those organisations. More likely I think probably what’s going to happen is in areas where they have got very good forum support organisation, and again OSCs, PPI forums, forum support organisation have been very patchy as well. You have some very excellent ones but others that really are not very good at all. We know there are areas where they are good supporting PPI forums. Well they, stand a very good chance of doing that. We know it’s a competitive process, often local authorities when put out contracts it is a competitive process. I assume it will be a competitive process. But I mean what will drive that competitive process definitely will be best value, best value for money. Because that’s the way it works and local authorities will almost certainly I mean best value is not just value for money, but when it comes down to it, are economic facts. So it will be probably be that the person or the organisation who can provide the service the cheapest, is probably in with a very good chance. It may not be the private sector but I don’t know.

You asked a question about the voice of patient on management boards, I completely agree with you and in fact about 3 years ago my organisation the Democratic Health Network published a green paper on the democratisation of the NHS. There is a complete democratic deficit within the NHS, and what you need is direct elections to appoint people to organisations. We still feel very strongly about that, it hasn’t happened. We know that won’t happen because I think the big issue at the moment is the role of non-executive directors actually because non-executive directors on management boards often feel very frustrated they don’t actually know what their job is. On the one hand they are told they are like the non-executive director of any business in that they have to ensure the survival of the business. On the other hand they are told they are meant to represent the community. And a lot of them actually went into it and of course they are appointed by the NHS appointments commission, a lot of them went into it to represent the community but find themselves unable to do so once they get there. I would agree with you there an unacceptable democratic deficit at board level in the NHS which is not solved by LINKs. We need PPI forums you need some form of public patient involvement structure that is well supported, capable, has the capacity, is vocal passionate and committed, but you also need input at management board level as well.

NEW SPEAKER: Excuse me I would like to raise an issue here this lady sitting in front of me started off the statement by saying you should not bring your personal experience into view then went on to say she wasn’t getting the access she could go to board meetings but she couldn’t speak. Which is a personal issue. I would like to state that in our particular place, I am going to use my own experience here because I have got nothing else to look on, you sit on the board, we have our places on the board. We speak on the board. We have influence on the board.

ALYSON MORELY: That’s fantastic.

NEW SPEAKER: You people should not say don’t bring your experience in and then do that there are exceptions to every single rule.

ALYSON MORELY: I think the point is that in those areas where PCTs and NHS trusts

NEW SPEAKER: We’re an acute trust

ALYSON MORELY: Whatever trusts, when NHS organisation are open and accessible that is fantastic, laudable but there is no statutory requirement

NEW SPEAKER: I a am not saying there is. What I would like to point out there are cases where it does happen.

ALYSON MORELY: The move towards foundation trusts will probably halt that level of transparency and openness. Certainly in those areas where they have foundation trusts they have in a lot of areas they have found membership never penetrates beyond that level. That the day-to-day management of it the strategic direction of it is very much in the hangs of the executive. Can I just move on to the other what other people have said. The man from Croydon asked about unmanageable beast of LINKs. In a way Martin is right its up to you to make what you want of it. One department of health official said he envisaged LINKs would have a thousand people. That’s tremendously optimistic of him. I think its highly unlike you would ever get that level of commitment. That picture is probably never likely to be the case in reality but I would really take Martin’s suggestion. In the absence of anything, try to make what you would ideally like. That is difficult because it’s very difficult to start with carte blanche but talk to PPI members, talk to early adopter sites. They will be on the CPPIH website. There should be a list of all the early adopter sites. There will be activity thinking about how you do this scoring them up, talk to them, email them, ask them for their ideas. You may think that won’t work for us, totally inappropriate structure or set up for us, but at least it give you ideas. In the absence of anything just go with what you would most like to have.

NEW SPEAKER: A question to ask would be related to finance because if you are going to have an open meeting someone had to pay the cost of the hall hire, the refreshment etc. etc.. If we’re not going to fund that, to finance that, we’re in a predicament.

ALYSON MORELY: I know some PPI forums have had that sort of problem with support themselves, and for example in one London borough the PPI forum was very well supported by the acute trust they had office space, phone lines photocopying but some PPI forum members were saying we’re not sure whether we like this close relationship because how can we be independent. So I think there is a real issue about funding. I don’t know what the level of funding support is going to be for the support organisations to the LINKs. It may be that you can get money from trusts that are committed to openness and public patient involvement. They may actually provide money and resources and venues for you to do that. But then there is the issue about independence. I just wanted to move on to what Mike was saying from Bucks. He was saying will local authorities be able to set up whatever they want? There will be a model contract in relation to what these organisation that succeed FSO will be, but again it is only a model contract. One thing we don’t know is how closely local authorities will be urged to stick to that model. It could simply be a model contract where local authorities are told “have a look at this. If you don’t like it rip it up. Make your own.” It may be a model contract that says we strongly advise you to stick within the parameters of this. That has not arrived. The department has undertaken to get that out for consultation as soon as possible but it has not arrived yet. Look out for that.

Roger mentioned ring fencing. I completely agree with you Roger about ring fencing, there have been a rather shameful history of, ring fencing. I used to work in the HIV field. I know every well one now non existent London health authority carpeted their offices from the HIV ring-fenced money. That was the rumour. There was an awful lot of office refurbishment going on with no budget for it until the ring fence budget was there. There’s a long and shameful history of ring fencing and money going elsewhere. The Department For Communities And Local Government have a policy of not ring fencing money for local government because there is an argument that local government should have autonomy of how it spends its own money. As I said local Government is trying to move away, the Department For Communities And Local Government is trying to move away from ring-fenced funding, parcel it all up into big grants so even though there maybe an indication of how much is in the general settlement for procuring support services for LINKs, local authorities will not necessarily have to spend that money. I think its up to you. If there’s not an indicative amount, get a good idea from the Department of Health what they think it should be. Get a good idea from your own forum support organisation of what support will cost. Make representation to your authority, ask them how much they are spending on it. Ask them early and often. Because they will have to make budget allocations for it. So if you get in there early and often, specially if you find out that its a pretty paltry sum you feel that more money is necessary, talk to your forum support organisation, go to your front line councillors get them to make representation about it. We don’t know how much will be there. But there is a lot that local people can do to try to influence how much is spent on this. But the chances are its not going to be a lot of money. We all know that PPI forums have been struggling. There is a commitment to there being part of what sparked the abolition of the commission for public patient involvement was the review of the bodies and the review of arms length bodies was to save money. That was the Department of Health justification for the commission being abolished was that it was suggested in that arms length review that was abolished in order to save money. So the chance are there will not be huge amounts of money.

MARTIN RATHFELDER: We need to start thinking about points we want to make. I don’t want to lose them there’s one we aired a little bit about the seat on the board or voice on the board, and maybe that’s one of the thing we should be saying if we going to have LINKs we don’t want to lose the voice on the board that we had before. As far as the money is concerned, I think this is very key issue, and this sounds to me like a political process. What we need to do is to find out how much money the local authorities is given. They are talking about the same budget nationally as we have now which is about £26 million, but that’s about 60p for every person in the borough that’s the level of money we should be looking for. If the budget now is 60p a person we’re not going to be doing it for any less.

Kenneth Appel: Royal Brompton Harefield trust. None of us have an issue about improving the health service. What we have an issue with is management. Marks and Spencer’s when they were ailing did not pull down the stores and then turn round and say now what shall we do here. We don’t want revolution. This is what we’re trying to do, this is what its trying to be imposed on us. Its happened before, in the national health service. I was concerned with the national health insurance scheme instead of building on it, they put it in as a political measure and when the national health service started they found that they could hardly afford it. This has been the case ever since. We have got a good organisation which I developing and has developed over 2 years. Let’s build on it

NEW SPEAKER: Hear hear!

NEW SPEAKER: Not scrap it then turn round and say now LINKs is a good idea.

NEW SPEAKER: Its a really, really quick question I just wanted to ask Alison whether or not the volunteer organisation that you talked about in the local government bill, are going to be involved in local area agreements includes LINKs or not?

ALYSON MORELY: No. You are just talking about that list, it’s a really useful bit of the local government bill because at the moment all local authorities, actually local authorities don’t have to have a local area agreement but most of them have them. In the future all local authorities will have to have a local area agreement with these high level outcome targets that will say things like by 2010 we will have half teenage pregnancy rates or we will have 50% improvement in how safe people feel. They are outcome targets which I think is really important actually and they are high level. But what they have not had is even though lots of organisations sign up to local area agreements, what tends to happen is the budget crisis and every bit of commitment they have made to local area agreement they say, what for example the PCT will say that’s absolutely great we still completely agree with everything in the local area agreement but unfortunately we’re in deficit and if we don’t make our targets or if we miss our whatever target, we will be penalised we will lose our rating we will lose money they withdraw. That’s has happened quite a lot. It’s completely understandable why that does happen. What this list does it binds people much more in a much more committed way to high level outcome targets. Unfortunately, the only health bodies there are PCTs and actually in the original local government white paper, it was NHS foundation trusts, it was basically all NHS trusts. That’s now fallen out of the picture so its just PCTs that have a duty to actually co-operate and sign up to the local area agreements. Now that’s not to say that in other areas they won’t sign up, the fact is they won’t have a statutory duty to —

NEW SPEAKER: I am just wondering if this means LINKs can influence priorities in the local area agreement?

ALYSON MORELY: To go back to the very complicated diagram the chances are there will be a local area agreement the high level outcomes that will be co-ordinated, signed off by a local strategic partnership which is a multi-agency group that co-ordinates action to work towards those high level targets. Below those in most areas, again this something else that has come out of the local government bill, a statutory requirement to have a health and well being partnership that sits below. Lots of areas will have them but there’s no statutory requirement for them to do so. When that diagram was set up we thought that was still going to be a statutory requirement so the idea would be that LINKs would actually sit on those health and well being partnership forums. Now in again its disappointing that there is no statutory requirement to have those because if there was we could make sure that LINKs and other community groups had an input into the health well being partnership which directly fed into the local strategic partnership which sets the high level remit. That maybe there in all areas.

NEW SPEAKER: I have not heard anybody say anything about the provider trust PPI forums. We have had very good experience of in Central North-west London mental health trust. We have just learned that CNWL which is that trust they are hoping to get foundation trust status in the next few months. I have just learned that somebody has been told that they are going to be the new PPI forum lead in the new foundation trust. Could you explain the situation regarding provider trust PPI forums what going to happen to them now, and this situation with regarding foundation trusts PPI forums hosts whatever they are.

ALYSON MORELY: The idea is that PPI forums, whether they are PCT PPI forums or provider PPI forums or mental health PPI or ambulance trust will somehow meld into formal LINKs that they will become part of LINKs. But again as you said, there is no national strategy for doing this. This is something that will need to be determined locally. So I know that some people in this room have been told that there is a sort of desire for a distance between PPI forums and LINKs but my general understanding is that most people think it would be a good thing for good committed hard working knowledgeable PPI forum members for them to take all that acquired knowledge and expertise into the LINKs because if they don’t LINKs will founder. Then there’s a general understanding that a lot of PPI forum members will continue into LINKs but I do think that that is quite a big assumption because a lot of the reason why people got involved in the PPI forums in the first place was either because they had direct, either they or someone they care for, had direct knowledge and involvement with a particular institution. So they either felt very angry about it or very frustrated or they felt very warm and great they had a great deal of loyalty and commitment to a particular institution. I can’t imagine people feeling the same sort of burning commitment to a theoretical concept like commissioning. So I do think that is a challenge in itself to continue to get people. I really hope that PPI forum members do continue into link because if they don’t, I think LINKs will struggle even more than they will anyway.

Frank Rust: I think about representation on foundation trusts boards. When the trusts were starting its process you get in place immediately. Get yourself named as a partner organisation then you have got a permanent place on their Government. I resigned from that because you got no power after all. In foundation trusts it’s a waste of time forget it. And the first thing that happened was it cost the local PCT more money because they charge for everything they did, and got us £5 million in debt. Just to say a little bit about my background I start in CHC in 90 do went all the way through the system, started regional chairman ACHCEW, sounds like a sneeze, and what I am hearing here is déjà vu. what I was hearing 2 or 3 years ago when the CHC were abolished what is the Government doing blah blah blah. I think I am passionate about it I am going to stay on, no matter what, but there’s a bit of misconceptions that the Government had at the time still in the system. CHCs, they were patchy at the time but there was nothing wrong with them that a bit of performance management couldn’t have organised. So to abolish them because some were good you could equally say you should keep them because some were good. The other thing you mentioned, the less than 14% recognition I forget the actual figures. We struggle with this trying to get through the CHC years come to conclusion that the public, the man on the bus, is not interested in health until he’s in hospital, until he’s ill. No one is. You talk about closing a hospital down somebody everybody knows CHC they are all full. I don’t like this misconception we were ineffective it was only 14% or so. By the way I a not having a go at you.

ALYSON MORELY: I just want to say at the time my organisation the democratic health network was, ACHCEW was recommending, there be a thorough going review of CHC. We were supporting that. At the time ACHCEW were undefensive and open. They themselves said, we could of course, we can improve. We very much felt that would be the best thing to do. I do agree with you to a certain extent that people tend not to recognise you until they need you, but I mean this part of a huge possible an unmeetable challenge to have this very strongly engaged wider more representative voice engaged in the NHS. How do you do that? Apart from in crisis because the same as anything, school governors you struggle to get people to meetings, unless there’s a problem.

NEW SPEAKER: You just have to keep trying to

ALYSON MORELY: Its a real cultural change to turn people’s feelings, fine we don’t have to be involved until something bad happens whether that is actually a realistic expectation that people have busy lives, difficult times, why should they turn up?

Frank Rust: We did have £35,000 for a Peer Review Group, Alan Milburn published the views, nobody saw the point of carrying on with it. Interface with the local authorities is the main thing. I sit on the host board. I sit on the PCT board. I have always approached them with the fact saying we’re a resource for you to use, use us we’re cheap. We’re independent.

Merfyn Williams: I am from Camden Council care trust. I just want to follow up on what Roger was saying about the ring fencing. A good example here in my PP area what’s important to me is access, this. Why is it we have to fight all the time, can I have my access needs? The point I want to make is why don’t you have in, I know that going to LINK nothing is happening in LINKs, policy and procedure with protocol of ensuring that access it’s provided. We’re not discriminated against. It’s a catch 22 situation here with volunteers. Because we’re volunteers we’re not eligible under the DDA to have access provided. You need to look into that one and I have spoken to Richard I was hoping he would put it to the Government legislation to ensure that the provision is set in motion without any element of discrimination. Second point I want to ask a question is, voluntary organisations getting involved in LINKs, I am really worried about this point here because you have a big organisation really not interested in the deaf which I, issues for deaf people, they have a member organisation that has no voice. Its not democratic. Its trustees lead. Now for example, if the local authority wants to have people involved in understanding health matters concerning people with a hearing loss they will probably go to the RNID rather than local individuals. Now the big problem for me there is, the RNID is focused, in other words they have an interest in their own organisation, where money is concerned not the grass root user. I am a bit worried about the power element of us being pushed out. It’s has happened in local authorities level. I am really worried about us being isolated,. Another organisation called SIGN works with people with a hearing loss and mental health problems. It’s a good organisation but they also have an element of power. Its not a member of the labour organisation so therefore we can’t influence organisation itself about what we want. So, I am a bit worried there. Another area also my experience in PPIF is that the mandatory training necessary on deaf awareness disability awareness, and race awareness is not there. And I think its very, very useful that anybody who’s goes on LINK has those elements of training. Because then they can have a wider understanding of the diversity and the people that work together as a team because I have noticed that what the biggest problems in Camden, I am not being offensive here, is that the education is very powerful in PPIF is than overwhelmed us when we’re trying to have a voice its quite frightening. We’re trying to understand language, we’re trying to understand what you are talking about. Trying to understand the system in such a short time. Obviously that is why quite a lot of us opt out. I am thinking of resigning have I got barriers in front of me, and I am growing tired of having to fight for my rights first never mind health matters. Being a great advocate in my own area I am trying to change the ethos of people’s attitude. It’s very difficult, but I hope that going over to LINKs please be mindful you do need to set policy practice and procedures with protocol that enables whoever runs LINKs to make sure that access is in there. It’s a big problem here that Roger brought up okay thank you. {Applause}

ALYSON MORELY: I completely I accept everything you say, and I certainly the model contract that comes out from the Department of Health, should certainly talk about. In fact I mean there are issues and I don’t know we would have to check up with the DDA, whether LINKs and voluntary sector bodies actually have the same sort of duty to promote access as other public bodies. And certainly any contact should specifically specify that. There is another issue, really important issue that you raised round awareness generally and that’s not just round awareness of people with hearing impairments, but also other physical disabilities, and people who are doubly disadvantaged in terms of black ethnic minority people, lesbian and gay, who tend not to have a voice in forums. Its really important for forum members who are speaking on behalf of the community to have training awareness support to understand community needs. And part of that is being assessable to all members of the community. But also part of that is about having learning and development in relation to other people’s needs. Now as far as I know, there is nothing specified about how LINKs members should be supported but I would say, if they have any sort of representative role they need to have proper induction training. And this should certainly be part of it. Your last point as well about the bigger glossier voluntary sector edging out smaller, sort of user owned and user advocate groups, I completely agree with you. There is an element that I heard now people talking about the third sector in relation to the volunteer sector which is patronising. Some people are talking about the 4th sector, but third sector the Government are always going on about being involved in strategy, they are the bigger glossy institutionalised voluntary sector, and what you need to do is encourage the so called 4th sector which are small grass roots voluntary organisations that often don’t have the capacity. They do get elbowed out. I would agree with you. I know that some local authorities are much better than others at actively talking to and engaging encouraging groups like that. Its not only for the LINKs but it also for the overview and scrutiny committee as well.

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