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Minutes of the Annual General Meeting held on September 2nd, 2004 at Friends Meeting House, London 

 (The minutes will be agreed at the next AGM of the Patients Forum in September 2005 - the presentation only is given here.)

Meredith Vivian, Head of Patient and Public Involvement, Department of Health 

“Thank you very much for inviting me.  It is a very good opportunity for me to give you some early thinking from the Department of Health.      Before I say what my presentation is for, can I just take 30 seconds to remind you all about what the PPI system looks like? We will probably have differing levels of familiarity and I’d quite like us all to be familiar with the base line.   

It all came through various pieces of legislation, primarily the Health and Social Care Act 2001 and the NHS Reform Act 2002.    That gave us a series of mechanisms which essentially replaced the CHCs.  Let me just quickly run through what they are:  

  • support for patients is now provided through PALS (Patient Advice and Liaison Services) - on the spot advice and assistance in the NHS and delivered by the NHS
  • for independent support for patients wishing to complain against the NHS there is now the Independent Complaints Advocacy Service (ICAS) currently provided by four providers around the country
  • performing the public input into health and health services is now done by the Overview and Scrutiny Committees (OSCs)  of local authorities.  They are the statutory consultees for major changes in the health service and they have a specific role to review the planning, provision and operation of the NHS as part of their wider powers to promote the well-being of local people   
  • Patients Forums, one for every Trust and Primary Care Trust and their role is to monitor the health services provided by the NHS and to feed the views of local people into that monitoring activity and thereon into the Board of the local NHS.   PCT Forums have a range of other functions but we’ll come to those later.

I think it is important to be familiar with the starting point and that, if you like is the system.   There is another element that you’ll be familiar with and that is Section 11 of the Health and Social Care Act, which is a duty on the NHS to involve and consult patients and the public.   Putting those pieces together we end up with what we call the PPI system.      

You’ll know that the Government has recently gone through an Arms Length Body Review in relation to the Department’s non-departmental bodies, i.e. the quangos that essentially support delivery of health services.  The drive there was to see whether, through rationalising these arms length bodies, it would be possible to deliver some savings, to cut out duplication and basically to make better use of available funding.   There were 40 arms length bodies and the intention was them bring it down to about 20 to free £½ a billion for front line delivery.   

One of the casualties of the Review was the one element that I didn’t say in my introduction which is the organisation the Commission for Patient and Public Involvement in Health.    The fundamental role is to support the 571 Patients Forums.  I say support and there are lots of elements of that: 

  • The appointment of members
  • The provision of staff support
  • The provision of advice and assistance
  • The provision of funds 

Essentially it provides the wherewithal for Forums to do their business as effectively as possible. 

The Commission also had some other functions including promoting greater involvement of patients and the public and reporting back to the Secretary of State the product of PPI.   

That is the context and what I’d like to do today in the remaining time is to talk through with you our early thinking about how we take forward the Commission’s functions to best effect.     I’d like you to bear in mind that what I am going to say today are our ideas, part of the process that I am going through at the moment is to share some ideas, hear some feedback and get people’s views about those ideas, whether they can see improvements, areas for development or things that I might say and you say “what about x or y?”  For me this is an opportunity to get your feedback as much as for you to hear what I’ve got to say.   Bearing that in mind, what we discuss today may look different as a result of this engagement exercise that I am currently going through.     If in three months’ time you see something dramatically different from what I am saying today then that’s because we have been listening to what people have to say and taking account of it.  I do want you to have the opportunity to ask me questions as we go along. 

Let me take you through the various elements.   First of all to squash a misconception.  One of the options considered during the ALB Review was for the HealthCare Commission to take over the primary role of CPPIH.   It was thought that the HealthCare Commission might be a good vehicle for supporting Patients Forums.  That was an idea tested out and in the end we didn’t like so didn’t go for it.     There are some synergies to be had, though, between Forums and the HealthCare Commission but I’ll come on to that in a minute.  We also considered other ALBs taking over CPPIH’s functions and in the end there weren’t many natural fits so we have decided to go about it in quite a different way and that’s what I’d like to test out with you. 

About the HealthCare Commission,  we do think there is a job to be done in making sure Patients Forums work well with the Commission.    They are both designed to improve health services and do it in different ways and at different times and through different methods and we think it is important that they are able to work together and able to trigger each other’s activities.    For example, if HCC wants to do a themed review of a specific area it would obviously make sense for it to alert Patients Forums of that idea and to suggest that Forums might like to engage in that activity, for example, services for older people.   It would be perfectly sensible for HCC to say to Forums that we are doing a themed review on services for older people and any feedback you could give us from a local perspective would be very helpful.  We’d be happy to work with you in terms of devising a collection mechanism in terms of patient feedback.     That is obviously very helpful and we would want that relationship to be developed and for communication from one to the other to be developed.   Similarly, if a Forum is picking up important information locally, it obviously makes sense for it to be able to trigger an activity from HCC.    That relationship needs to be strong and active and ongoing but there is not going to be any managerial relationship or any direction from one to the other.  It is one of good practice and partnership.    

One thing that is clear that the ALB Review specifies, is that appointments to Patients Forums will be undertaken by the NHS Appointments Commission.   The thinking behind that is that the Appointments Commission is an organisation set up and funded to be specialist at appointments.   It didn’t seem sensible for the appointment process to Forums to be done by another organisation.  This seemed to be duplicating and wasting resources.   The Appointments Commission is now being scaled up to take on this extra work which, obviously is a major piece of activity for it, 5 – 10,000 extra people to go through its processes.   One thing that I am keen to clarify is that the appointment process to Forums needs to be much more rigorous and a bit sharper.    I had a sense that a number of people who joined Forums were not absolutely clear what Forums were all about and what their role was and, therefore, whether or not they were suitable.

Similarly, I think the appointment process, to-date, may be different depending where you are and we would be very keen to see that there is a much more rigorous and standard approach to appointments to Forums.  We are in the process now of working that through with the Appointments Commission and CPPIH to make sure that the lessons learned are fed into the new appointment processes. 

The next stage to talk through with you is staff support to Forums. We have been in several minds about this.  There is something to be said for staffing support all to come from one organisation so that staff are all recruited on the same basis, they are all governed by the same terms and conditions, they are all employed to something that they all recognise as being a consistent and standard approach.    Finding a single organisation that we can just say: “Look, here you are.” to take on this function isn’t as easy as that.

We don’t want to give it to an organisation that isn’t appropriate. Rather than make decisions on the issue of staff support now we think it better to seek the views of Forums on the nature of the support they need and how best for it to be delivered.

The way we want to perform this process, and we are about to kick it off, is through an extensive engagement exercise where we ask a lot of people (a) what has been your experience to date and (b) what kind of support would you like to help you deliver in the future.  

We are going to be going through that in a range of ways.  We are certainly going to be asking Forum members generally.  We also want to learn from the current arrangements, the Forum Support Organisations that have been contracted by the Commission, we want to ask their experiences.  We certainly will be asking a number of other groups who will have had contact with Forums and been able to observe how they work, including the NHS and groups like this one.  We are going to do it in a number of ways.   We want to go through a survey process where everyone has a chance to have a view.  We are going to be commissioning a research company to run qualitative research as well around the country so that we can get some in depth views from a number of sources.   There will also be opportunities to feed into a website database.  It is absolutely essential that whatever arrangements we come up with they need to be informed by the people who are affected by them but who have to deal with them on an everyday basis. 

One of the areas that a lot of people have commented to us is necessary is one of a natural home for advice, information, expertise, research and evidence bases about PPI generally.   I bet if I went round the room now and asked you all to come up with a definition of PPI and what its value is, we’d get the same number of different answers as there are people.    It has become some kind of quasi science that, I think, gets in the way, quite often of delivering the benefits that can accrue from PPI.  After all, it is there to deliver improved services  and  enhance patient experience. Bearing that in mind, and also bearing in mind that the NHS has a duty to involve patients and the public so it needs support to do it, Forums, I believe need much more than just staff support.  They need the wherewithal, the insight, the understanding how to manage themselves, how to operate with their partners, how to operate in meetings, how to do monitoring visits, how to write up the reports and how to guide seems to be absolutely fundamental.  There is another element as well. You will be aware that across Government there is a really strong drive brewing, and I think it is going to get bigger after the next election, and that is around community development and citizen engagement.  It always makes me laugh because every Government department does something around citizen engagement as if every citizen only relates to that department.  Of course, they are all the same people but we all treat them as if they are peculiar to ourselves.      There is a real need to work more strategically across departments to say, look, if you are wanting to be more involved in the police service or in the prison service or in the health service, what you will be doing will be very similar in some respects;  some of the skills you’ll need will be similar, if not the same, some of the relationships you’ll need to develop will be similar.   There is something to be said here for insuring a consistent approach and making best use of what we all know will always be limited resources.  

I am describing three areas of development – supporting the NHS to do PPI well, supporting Forums in their particular role and working across Government.   What we have in mind is a centre which isn’t necessarily an organisation but is more of an initiative.  Let’s call it for the sake of argument the Centre for Patient and Public Involvement.  We don’t picture a great monolithic organisation which sucks up loads of resources.  We are talking more about making best use of the skills and expertise that’s out there but bringing it into one home.   Once again, it’s probable but not necessarily the case that we might contract out that set of arrangements.  We’ll also be asking people like yourselves, Forum members and across Government for their views.   That is another part of our engagement exercise.  

What kind of roles will this organisation play, how can it best do it, and indeed what is the added value that it will bring to the playing field?  We believe there is a role for this type of exercise but we want to be sure that it delivers something sensible. The way that I perceive it, certainly around the Patients Forum dynamic, is for it to have, let’s say a board of trustees or governors who are themselves Patients Forum members and they then oversee the support and advice and information that is given to Patients Forums  rather than having this top down board of excellence telling smaller organisations how to do things.   We’ll have it the other way where we have what’s happening on the ground feeding into this exercise and out of this comes the advice that is relevant and informed by real experience.  

Those are the sorts of elements that we are thinking through.     There is lots of detail still needed and, of course, I don’t want to go into that detail at this stage as we need to hear what people have to say about the ideas and what they say will then form the detail. 

There are some important elements to keep in mind.   First of all, we are very keen to learn from what has happened so far.  It is not just a question of saying we are doing something new, let’s start from scratch.  That isn’t very helpful because, of course, that would be throwing out useful feedback.  Also lots has happened that is good and we want to make sure we continue to capture that and feed that into the way we take things forward.   That means from 1974 onwards – for the CHC historians who will know how relevant that is. There has been lots of CHC good practice which I am not sure has been captured to date and I think we need to ensure that is fed in, it is still relevant.  There’s been lots of learning from the Patient Forum activity to date and, indeed, CPPIH work to date.  There is something to be said, also, for building relationships around all of this.  It is my observation again that there are relationship difficulties out there in the PPI world.  An effective Patients Forum is always going to be one which has a good relationship with its partners, not a table thumping, ‘you’ve got it wrong’ type of relationship.    There’s also an important piece of work to be done about clarifying distinctive roles.    In the PPI system and how it relates to the NHS and local government, there is absolutely no point in there being duplication of resources and all it does is mess up the playing field.  There is a job to be done in clarifying roles and making sure that those players stick to their position.  There is no point in an Overview and Scrutiny Committee fighting with a Patients Forum about what their roles are.  They have different roles and need to be doing them separately but in partnership.    There is also a very important job to be done in relation to the NHS.     In the end all the PPI system is there to do specific jobs but their biggest job is with the NHS and it needs a great deal of support to do that.  The area about working across Government is very important too.  We can’t waste our resources duplicating things or, worse still, leaving gaps. 

That is the picture at the moment and I am going to pause there as I would really like your feedback and am very happy to answer as many questions as you can throw at me. 

Q: Brian McGinnis (L’Arche) “Isn’t there quite a strong case for having, let’s call it a consumer body, which does its own thing in toto both locally and nationally so it appoints its own members, it appoints and manages its own staff and it has its own research except for resources.   Although you mentioned creating a new, real or imaginary centre, the Government’s strategy seems actually to fragment that independent, ‘outside the structures’ consumer body rather than to bring it together.  Is this because you are still scared of what happened with ASCHEW or is there a more logical explanation of fragmentation as opposed to unification?”       

A.   “To be honest with you, I am not sure that we are scared as an organisation.  We’ve had time to work with CPPIH now and I think it is fair to say that the very fact that it has had these functions to perform, some of which have worked against each other, has proved very difficult.  Fragmentation is the pejorative way of describing it.  The way I describe it is putting the right function in a body which can deliver it to best effect. I personally don’t see the need for a central body to perform a role which brings it all together, which is essentially the national picture.     The centre I have described will certainly be able to pull together the views and experiences as they become apparent and whether that be just at the local level or whether it can aggregate it up through the regions at a national level.    Whether or not you need a national, central body to do everything, I don’t see that.    I do accept, though, that we don’t have  fragmentation so that parts don’t speak to each other.   I think there is a coordination role we need to be very careful about.”  

Q. Sally Brierley, Health Link: “Leading on from that, I think I agree with you in terms of a national body but I do think you need a national voice and I think that is more along the lines of what you were saying about having Patient Forum members on a board in the centre so that it is actually Patients Forum members.   Perhaps we could look to have a national voice for Patients Forum members.    I don’t think it is enough to leave it for Patients Forum members to come together as and when they like.  I do feel we should be putting in place some sort of framework  by which they could be encouraged to do that – for a whole variety of reasons, not just being a national voice for patients but also sharing best practice, divvying up the workload, looking at issues which cross Strategic Health Authority areas or regions.   I would like to see something along those lines.  

The other thing I wanted to say was this issue of the number of Forums. You said 571.  Is there any notion that perhaps we have too many Forums at the moment?   And just so you don’t think it is me coming from my history with CHCs, to say that the Vice-Chair of CPPIH said at the Socialist Health Association Conference in May that she thought there were probably too many Forums.  Perhaps we should be moving towards one Forum per local health community.   I wondered if you had any thoughts along that line?” 

A. The distinction you draw is really important – the national patients voice versus the national Patients Forum voice. I see the need for the national Patients Forum voice because it is a particular set of voices, specific to their functions and that they can elicit views in a particular way.  We need to get away from the national patients voice.   There are lots of organisations that can bring to the table the national patients voice depending on the issues, disease specific, population specific and so forth so I think that is a very helpful distinction and thanks for that.         

On the number of Patients Forums, to be honest with you I think there are too many as well.   I think the solution about the right number is tricky because if we have independent, statutory bodies attached to things like health economies that is extraordinarily difficult to define and will always shift, I suspect.   It is finding the right vehicle to attach a Forum to.   I take on board the question and it is something that I am particularly keen to explore. 

Q. Bill Marks (Hackney Health Scrutiny Commission)   The most important thing is networking between Forum members.  Without networking you are effectively completely useless.  There isn’t the mechanism available for us to do it.  We can trust our Forum “Hindrance” Organisation to do it and we don’t have the resources to find the contacts for other Forum members.   Networking is important but I am not quite sure how we can do that with effective regional organisations at least but preferably a national organisation that would have a database of members.  There is a case for a national organisation.      

One other area that is important to Forum members, speaking as a Forum member but it hasn’t affected me yet, is nitpicking over expenses.  I was talking to one of my members last night who said that his Forum Hindrance Organisation had refused to pay any expenses because he had actually made a claim for travelling at peak time in order to get to a board meeting in the morning.  Why was he travelling at peak time, it didn’t matter if he got to the board meeting late.   It’s a stupid example but is absolutely typical of what is going on in our part of London.      As a member of the Hackney Health Scrutiny Commission, we find it very difficult to work with Forums.  We are not being given their details. We write repeatedly to our FHO, which is CEMVO who refuse to make any contact with us.  They do not reply to letters.  So how can OSCs and Forums work together, we are not making contact.” 

A. I can’t say much about all of that but I tend to agree with you.  The relationship between  OSCs and Forums is really important.  Staff support for Forums has been one simply one of an administrative nature, good or bad quality.  This support is often around communication, it’s liasing, getting to grips with local organisations on behalf of the Forum.     One thing that always strikes me – we are always talking about how important Forums are, their powers etc but we have to remember, the proportionate issue here.  It is a small group of volunteers giving up their time freely and I think one of the issues around staff support is that the best way you can enable those volunteers to be effective is to take off the burden of some of these other issues that are essentially a waste of their time, i.e. setting up things or creating things, to allow the Forums to go in and do their specific special role which they are there to do.    I think a very close look at staff support for the future is absolutely fundamental.     As regards to knowing who is on your Patients Forum,  It is just fundamental.  They are public bodies and they should be known to the public, I think.” 

Q. Carol Herrity (Royal Mencap)  “Coming largely from the fact that Mencap has been involved in partnership boards around oversight of learning disability services at a borough level, we have been getting into some of the issues around how do you involve local parents and people with learning disabilities at quite strategic levels on quite important issues.  One of the things that is really important is the resources to employ staff at the right level and that picks up on the point that you have just made. I would add another function in relation to staff which is always overlooked and may be you need to talk to the Plain English people.  In order for the Health Service to talk to lay people or to professionals from other technical backgrounds, there needs to be a common language.  That means developing capacity within statutory services to learn to speak plain English. That’s a real challenge.  You not only have to speak plain English you also have to speak in key points. You can’t go for your forty-page document to tell it how it is.  People with a learning disability are actually very good at challenging that sort of waffle.  You really do have to say what you mean. What is also important, from my experience, is that you don’t just have the great and the good appointed by the Commission, you have somebody who also has links with patient groups – either because they come from one or they are willing to go to one, to report back and to listen and to get involved in the local patient community, not just be a person on their own, isolated, perhaps a bit too precious.” 

A.  Very good points.  In our team we have recently produced a number of documents and we have put them through the crystal marking process and it is extraordinary how much it makes you work at saying what you mean as opposed to presenting it in a way that might look or sound attractive and it is a very good discipline. Certainly the centre idea I describe in the way that it supports the NHS get better in engaging with patients would certainly be the area we would focus on.      The other point you made, which was really interesting, was about who you have on Forums or, indeed, who you have on representative committees in the NHS.   It is a bit of a dilemma, I always think, because some of you may remember that the Patients Forum regulations actually require half of the membership of a Forum to be nominated from the voluntary and patient groups sector specifically for that point, to bring in the local community view.  A Forum benefits from that insight, experience and knowledge of the local community.   Similarly that would be true for the NHS.  It would obviously be sensible to have interests that come across the board particularly from those with interests in the learning disability field where the interest is an informed one.    But then you get a different perspective where people say that if you have those views, you have a Patients Forum with, say, people from Mencap, Mind and Help the Aged, then they become rather single issue biased.  Then we have that tricky dilemma.   I think the right answer is to have a wide range of interests and for the Forums to have the wherewithal and advice to break out of that single interest trap over time.”  

Q. Gerda Loosemore-Reppen (Sign)  “I am interested in those discussions about who represents the view of people who don’t usually get onto those groups because of communication difficulties and other special needs.  The CPPIH and the Forums have been criticised for being rather unrepresentative of local communities, by and large, and I think CPPIH  - in my experience - has been trying to do something about it.  From Sign’s point of view – having had a Department of Health funded project to increase deaf representation on PPI Forums – we have had some fruitful discussions with CPPIH.   That leads me on to talking about the appointments process; unless some changes are made to the NHS appointments procedure, people from those backgrounds aren’t going to jump through the hoops.  They need to be encouraged, supported and helped to fill in forms where English is not the first language.   There need to be some training programmes also for potential communities or capacity-building to use the current phrase, for those groups to redress the balance.  I also agree with what Carol Herrity said.  The NHS has been very much caught on the back foot in terms of explaining how they do things.   For example, to explain the structure of current decision-making in the NHS to lay people would be a very useful starting point.” 

A.  “Here is another very interesting dilemma.   I agree with you that it is necessary for communities to be represented in these sorts of exercises and Forums.   Then you get another school of thought which says: “well, actually, in a community that may have several hundred thousand people, how can you expect seven, ten or twenty people to be representative of it?   I agree with you that we need to make sure that it is possible to join a Forum and that the process is as accessible as possible.    It is essential that the Forum is not there in its own right, since it can’t be representative, it has to make sure that it goes and gets the views of those of the representative community.    I know that the Commission has been really determined to address what is an imbalance at the moment and all credit to them for doing so.” 

Q. Beverley Beech (AIMS)    “I would like to follow on from that.   I feel very strongly that on all these bodies where they are asking for lay people to be representative, the selection should be done by the lay people.  I think the system trawls for the people, but in the end you have a list of thirty five possibilies and I think from that list the lay people then select the most appropriate people to be representing them.  I think there is far too much cherry picking going on in the system and this seems to be a way that we can get round that.” 

A.  “It is an interesting point. I tend to agree with you.  It would be interesting to know what the response would be like in a health economy area.  There’d be thirty five names, let’s suppose, would the idea be to put them in the local newspaper or something?   We won’t go into the details now.  There’s also something to be said for a Forum’s legitimacy to represent the views of local people since the local people have said:  ”We are happy for you to represent our views.”  There’s some democracy in it.  

Q. Carol Herrity (Mencap)   Picking up on those issues, I don’t think I got across this point before.  I wasn’t saying that people should be representing a particular organisation but rather that if they don’t (or even if they do) they should be expected  - as part of their duties – to go out to at least one other to feed back about the work to that organisation and to take forward their views and do that on a regular basis.  That way you are exposing people to a wider range of views than just their own or their organisation’s. 

A.  “I understand that.” 

Q. John Wilkins (London Ambulance Service)    “We have been reviewed by CHI at some time in the past and they were very quick to say that we must make connections with the local communities out there in the whole of London.  We’ve got two hundred and twenty languages and so far I haven’t had a direct answer as to what would be the best way for the LAS and its Patients Forum to connect with those communities and give them a voice.      There might be elections but we don’t seem to have got beyond the election phase as yet.  What would you recommend that we do?   We don’t have one health economy we have about thirty three and a third at least so we do need some advice on the best route to connect with all these communities, to use all these languages and construct, what for us at the moment looks like a matrix of involvement. 

A.  “After all this time you don’t expect me to have an answer, do you?  (laughter)     Funnily enough, I had a meeting with Trevor Phillips around this issue when he was Chair of the GLA and he was very anxious about the way the London Ambulance Service managed to engage with its various populations.    I am not even going to try and come up with an answer but this is a good example where there is expertise and advice out there somewhere but there is currently no home to keep it and make sense of it.  This is a good role for the Centre for PPI, or a name something like that, where it is able to glean evidence, to understand where things work and where they don’t work and where they might work in a different context that can be generalised to yours.  You then present the question, the problem and ask them for advice.” 

Q.  Marlene Winfield (National Programme for IT)   “We are struggling very much with how to do this on an all important question like confidentiality. I have a question.  There is an assumption that hasn’t gone unchallenged in this discussion and that is that because you’re from a particular patient group you cannot rise above that and speak for wider patients and it seems to be received wisdom, certainly I come across it in the NHS.   I’m not sure it is true and because we perpetuate the assumption that we’re paralysed by the inability to get a representative sample of all the views that we could have to bring to bear. I think the challenge for us is putting together a group that has as many relevant perspectives as possible that can kick ideas around from a lot of different views and consult more widely where appropriate.    As long as we are looking for this perfect representative sample on the basis that no patient from any patient group is capable of representing the views of anyone else, I think we are never going to get to the bottom of this.” 

A. I take on board that point.  There are research methods for securing the views of very many people by asking a small number so we do need to be a bit more sophisticated in thinking it through.” 

Q. Elizabeth Manero (Health Link)   I wanted to add one more sentence on this representation issue and then I wanted to ask a question.    It seems to me that what has just been said is that it is about the work being representative not the individuals and that is achieved by all the things that we have described – going out and talking to people, just as you are doing today.  You are representing the Department of Health here and when you go and bring back the views to Ministers about what they are going to do, you are going to be informed by the discussions around this table and around this table we have expertise on a huge range of specific interests.    It is not a new formula.   I think we have to stop banging on about individuals being representative which I find people in the NHS are obsessed with. It’s about the work the input being representative, not the individual and there are ways in which that needs to be achieved, there are functions and one of them is your possible Centre for Public Involvement. 

Going back to the national body, my question is this.  If I am a patient who needs a hip operation, who is on a waiting list, who is worried about going into hospital and I hear about MRSA.    If I am listening to the radio and I hear the latest rates of MRSA and think:” Who is speaking up for me, who is exercising influence for me at the national level to make sure that this issue of MRSA is being tackled?”  That means a body, an organisation, a group of people, whatever it is, who has influence, who is positioned to understand the issue and to take it to the right place in the NHS and get it sorted. What would be the answer to that question?”

 

A.  Well, a few examples come to mind but first of all, I don’t believe it needs a national organisation to be the patients’ champion. There are lots of examples of organisations that have a view and an informed view, this group is one, the LMCA is another, Health Link has one, Harry Cayton has one, the HealthCare Commission has one.  There are lots of organisations that can bring to bear the views and experiences of patients at a national level.   We don’t currently have a national organisation which is the patients voice but that doesn’t mean that in the media there aren’t lots of people representing the patient’s voice.  We know that it is a major issue for local people at a national level around MRSA.   I need to be persuaded that we need something that is the patients voice, that is distinct from all the other voices that are already out there.”   

Jonathan Ellis, Chair of the Patient Forum, then thanked Meredith Vivian for coming along to the Patients Forum and sharing his thinking.    He said the Forum would look forward to hearing more about the plans as they developed.     Meredith said he had found it very helpful and thanked everyone.    

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  Last updated 8/10/2004   © The Patients Forum 2004