Minutes of the Patients Forum Annual General Meeting held on September 26, 2005 at Friends House, Euston Road, London NW1

Present:  Jonathan Ellis – Chair (Help the Aged); Frances Blunden (?Which);  Andy Ball (LMCA); Gerda Loosemore-Reppen (Sign) Sue Reed (BMA);  Barbara Wood (BMA, RCR);  Sally Brearley (Healthlink); Mark Hill (MND Association);  Liz Ranger (Contact a Family); Clare Corbett (Mind);  Angeline Burke (NMC); David Gilbert (NHSU/freelance); Ian Banks (BMA PLG); Geraldine Amos (Home from Hospital Care); David Crepaz -Keay (Mental Health Foundation); Nikki Joule (Freelance); Mike Took (Rethink); Alison Pettifor (Developing Patient Partnerships).  In attendance:  Diana Basterfield, Patients Forum

Apologies:  Elizabeth Todd (NAPP); David Congdon (Mencap);  Marlene Winfield (NHS Connecting for Health); Carol Herrity (Mencap);  Philip Hurst (Age Concern England ); Hew Helps (Chiropractic Patients Association); Eileen Neilsen (Royal Pharmaceutical Society GB); Clara Mackay (Breast Cancer Care); Peter Walsh (AvMA)  

Guest Speaker:  Harry Cayton, Director for Patients and the Public, Department of Health  

(See appendix 1)

 

Minutes of last AGM

The minutes of the last AGM held on 13^th September 2004 were agreed as an accurate record of the meeting.

Matters arising

There were no matters arising

Chair’s presentation of the Annual Report

Jonathan Ellis said:  “The thing that strikes me about this year, particularly compared to the previous year, is that again we have been faced by a health policy agenda which is beyond full.  So many opportunities, so many important issues that it has been vital for us to engage in, both collectively and individually as organisations.    I think on top of that we have had the increasing devolution (as the DH might call it) or fragmentation (as we might call it) of responsibility across health and care services both vertically as well as horizontally.    With the breadth of organisations at a national level who are increasingly responsible for elements of policy on which we as consumer organisations have an interest and, of course, the devolution in decision-making to a local level.  This too poses challenges for us as individuals and as a collective in terms of opportunities to influence.   So I think it is not surprising, perhaps, that again, looking back over the activities of the last year, we have covered an extremely broad range of topics and themes and that we have tried to be as responsive to that agenda as we possibly can be while at the same time maintaining a focus on our priority issues which are about creating opportunities for our member organisations, you all,  to influence the policy and decision-making framework.

We have covered issues as broad as the arms-length body reviews, the governance, control and management of foundation trusts, the role of the Freedom of Information Act in this brave new world of open government, palliative care,  private dental complaints systems, an interesting flip side to the work that Harry was mentioning around dental charging, I suspect.   So an extremely broad range of topics that we have tried to get to grips with and create opportunities for you all to influence. 

Of course, this year we also held a conference looking at the impact of the public health agenda and the importance of delivering health for all, a social inclusion approach to public health which I think is one of the major themes for the Patients Forum as an organisation.

This year we have also tried to create more opportunities for individual member organisations to engage with the work of the Patients Forum so we have sought deliberately to open ourselves up to your professional scrutiny, if you like.  For instance, we have begun to circulate the minutes of the Management Committee meetings to you all so that you can see the discussions that are taking place and the decisions that are being taken.   We have also sought to consult and involve members on issues such as the future strategy, whether we should re-examine our name – whether our name clearly describes what it is we are trying to achieve.  I think that whole approach, that engagement with you all as members must continue because it is so important.  It is what the Patients Forum is there to provide. 

I think also that we are all aware of the growing demands on time and energy that we all face as individuals and as representatives of organisations.   There is a growing number of networks and coalitions that we are all involved with for different objectives and I think that’s why it is even more important that the role the Patients Forum plays is clear and it provides you with the service you need and that you value from what we can deliver.   We will come a discussion about the future strategy and the way that the Patients Forum will go in the future in a few minutes, because I think that is an important discussion for us to have.

I think that is all I wanted to say by way of presenting what we have achieved over the last year and the challenges that we have facing us for the coming year.  I would describe it as a very exciting time for organisations like the Patients Forum and for the Patients Forum particularly because there are so many opportunities to create an effective network that is capable of sharing information, capable of empowering our member organisations to meet their own objectives in really giving a voice to patients in health policy.  

The Annual Report was adopted.

 

Strategy for the coming year

(See appendix 2)

Following discussion, it was agreed that the Patients Forum would undertake to carry out a scoping study.   

1. Key stakeholders would be informed of the project
2. The Management Committee would draw up a costed action plan with a timetable and budget
3. One or more  consultants would be commissioned to undertake a scoping exercise.  This exercise would examine;

                          i.      Review of information on  the extent of health inequality in the UK

                         ii.      Analysis of which other organisations or alliances are tackling this issue

                        iii.      Analysis of other alliances, which have been set up to raise awareness and secure change (i.e. Learning from the experience of others)

                        iv.       Initial market assessment looking at the expectations of current and future stakeholders and funders to establish feasibility

                         v.       Potential models and structures

4. A consultation with members and other stakeholders on the scoping exercise would also be undertaken.  This consultation would use a variety of tools.
5. The report would be presented to the Management Committee by March 2006.
6. The report would be discussed in detail with members at a meeting in March/April 2006, and an action plan would be developed based on the outcome of the exercise and the views of members.

Presentation of the Accounts

The accounts were presented by Brian McGinnis and adopted.

Election of Management Committee

The Memorandum and Articles of Association required that the two longest-serving members of the Management Committee stand down.  This year these were Jonathan Ellis and Geraldine Amos.   They stood for re-election and were elected.     The Management Committee members for 2005-2006 are therefore:   Geraldine Amos, Sally Brearley,  Jonathan Ellis, Gerda Loosemore-Reppen, Brian McGinnis, Judith Wardle and two co-opted members:  Eileen Neilsen and Angeline Burke.   

Proposal:  That a new Individual Membership category be introduced

This proposal was agreed.  Implementation would follow the outcome of the scoping study.

Appendix 1

Presentation at the Patients Forum Annual General Meeting 2005

Harry Cayton - Director for Patients and the Public, Department of Health

“When I was appointed two years ago I said I would come and give an annual report to the Patients Forum so here I am for my second annual report.

I have divided this into three sections which I hope are all issues that are relevant:  the first is an update on major elements of DH policy; the second is an update on departmental activities that are particularly relevant to patient and public involvement and the third is an update on my own personal work programme.

Update on DH policy  

As you know, there are two major pieces of work going on at the moment, both of which involve some very significant change to Health Service structures and performance, and those are the publication and programme of work published by Sir Nigel Crisp last summer – “Patient led HS” published in July and secondly the current consultation “Your Health, Your Choice, Your Say” which was launched by the Secretary of State.  The Patient led NHS proposals are really bringing together quite a number of things that have been in the pipeline but also pushing the agenda further in terms of the split between purchasing or commissioning of services and providing of services.   I guess that the intention is twofold – one to strengthen the purchasing side of the NHS – to make it more effective and to bring it closer to patients by bringing primary care practices, GP practices greater say in how and what services are commissioned on their behalf.  I would guess there is a subtext to this which is that we do now have very powerful providers in the sense of foundation trusts and that PCTs therefore need greater clout in order to manage their resources effectively and to counteract the power of foundation trusts.

The key concern, I think from my perspective within those changes is around the destabilising of community services which are currently provided by PCTs but which PCTs will not be able to provide directly in the future.  It means that either new provider trusts will need to be set up, which is probably the simplest local mechanism, or that community nursing and other forms of community support will need to find their way into various not for profit producers of various kinds or even into the private and independent sectors.  Depending on whether you are a cup half full or a cup half empty person, this is either a fantastic opportunity for the voluntary sector and for not for profit providers and for smaller and closer to the community and patients kind of provision or it is another Maoist constant revolution that the NHS puts up with endlessly. 

I guess from a patient perspective, it has significant potential in terms of really focussing purchasing on the users of services rather than on the providers of services which, certainly from my perspective, is the major problem in the NHS that has not been tackled.  The most powerful elements in the Health Service are still the providers who organise services primarily to suit themselves.  How do you shift that balance of power?  Whether this will work is another matter but I think that is the intention.    

Linked to that is the national consultation ‘Your Health, Your Choice, Your Say’ which follows on from the Choice consultation.  As you know many of the bits of the Choice consultation back in 2003 affected or primarily affect acute services so things around choice of hospital have become or are becoming very much reality.   Choice around elective care is absolutely a reality now and this next stage is to move some of the debate around choice and around patient managed, patient centred service into the primary care, community care and social care sectors.    Again, I think this is perhaps more than the patient-led NHS, this is a real opportunity for voluntary organisations and patient groups to have their say on how we look at the continuum of care out of hospital and particularly how we create services which are focused on the patient journey and not on the particular providers. 

I think there is a real opportunity there to try to reconfigure services on what happens to us as a patient with a particular condition or a particular set of conditions or particular needs and particular times instead of planning services from the perspective of the organisations, dotted around, trying to plan services from the perspective of the patient looking at those organisations and wondering how to make any sense of them of how to find their way through them.  The Secretary of State has made quite strong pronouncements about this:  we are moving towards a Health Service which has multiple providers and in which contestability** is going to be increasingly important.  (**Contestability. the new word for competition, translates as ‘the ability to judge between two different services’ and make a choice.)    The ‘Your Health, Your Choice, Your Say’  consultation is then a real opportunity to get stuck into that and I would say there is always the suspicion that the Department has got a plan in a bottom drawer and I can assure you that we don’t have such a plan at the moment.    This is a genuine, open consultation.  There are clearly ideas floating around in the Department just as there would be if you asked any question, but there isn’t a ready written White Paper so there is a real opportunity to influence this, particularly ideas around integrating social care and health care.    As you know the Green Paper social care consultation has now been absorbed into the consultation on the White Paper so the two are running in parallel.

So those are the three big policy areas which I think are likely to have a major impact on how the Health Service works and whether or not it becomes more adaptable and sensitive and responsive to individual patient needs and to community needs.   There is still a ministerial commitment and there is still a strong theme in thinking.

Departmental activities relevant to patient and public involvement

“First of all, as you know, there was the Arms Length Body Review of arms length bodies set up by John Reid; a relatively arbitrary decision that we had too many ALBs and a relatively arbitrary instruction to reduce them by half.  I think there is a lot of angst that people had about why this body or that body was axed.  I just want to repeat what I have said many times which is that there was no judgement made about quality of performance, what was axed was axed, if it was more convenient to axe it or it was difficult to merge it with something else or whatever.  The outcome has not been particularly brilliant in every area and as with all these exercises I would be surprised if we are anywhere near making the kinds of savings that we planned.    There is considerable pressure on ALB budgets at the moment, NICE and the Patient Safety Agency have had significant budget cuts at the same time as having to take on new responsibilities. 

At the same time as you know we have a cut of one-third in the DH staffing as well.  That is quite noticeable;  it is apparent within the building not least the number of empty rooms there now are with nobody in them. 

The main victim of the ALB review, apart from the NHSU, was the CPPIH.  As you know, we have just given it a stay of execution for a further two years probably.   It requires legislation to get rid of it so it will be abolished when the legislative programme allows.     Why have we done that?     There are two reasons why we have done that.   One was that the plan we were given by the ALB review, which was to divide the support mechanisms provided by CPPIH between the local service providers to Patient Forums, the NHS Appointments Commission and the HealthCare Commission, was quite literally never going to work.  I chaired the internal board that was trying to implement this change and it just became increasingly apparent that it just wasn’t going to work.  

Secondly it became apparent that after the consultation we did with Forums last year, what they felt about it, that with the ‘Your Health, Your Choice, Your Say’ consultation coming about, with more changes in the structure of the Health Service coming up, it was ridiculous to finalise the shape of the Forum support structure if we didn’t know what the shape of the NHS was going to be.   Ministers announced early in the summer this period of continuation of the present system which is basically to allow us time to work with Forums and to hear from the public about what they want so that we can create new patient forum structures that are fit for purpose in a new kind of NHS.   That’s where we are at the moment and again I hope that in the ‘Your health, your choice, your say’ consultation people will answer the questions in there about “How do you want to have your voice as an individual or as a community represented within the NHS” and in parallel we are asking Forums how they envisage support being provided for them in the future.   It gives us another opportunity to try and get this right.

Other internal things that are going on:   there is an internal review of the relationship with the voluntary and community sectors in various ways.  There is a liaison group representing the major providers of care services, chaired by Melinda Letts, that is trying to help the voluntary sector providers get some leverage in the Department’s thinking in the same way that the industry providers like the private hospital sector have leverage.

Secondly, there is the National Learning Network, which is the successor body to the NHS Modernisation Board, and that has a large number of voluntary sector CEOs on it and there is work going on to try and get their voice more effectively heard within that body. 

We are also - and this is one of the things I am most hopeful about because I have been trying to get this for twenty two years I think – proposing a strategic review of Section 64 grants.  Those of you have been in the voluntary sector as long as I have will know that successive governments have changed the rules.  Way back in 1980, S64 money was mostly doled out in very large chunks to a small number of already very rich establishment charities. There were some reforms made at that stage to introduce smaller grants and to support new charities to get them off the ground.  That worked quite well for a while and then towards the end of the last Conservative administration there was a move away from any kind of core funding toward project funding and the idea was that everything the Department funded needed to be a project that was clearly attached to departmental priorities.

The voluntary sector over the last few years got into a phase of trying to plan its work around the Department’s priorities and inventing projects in order to get money and distorting its own activities.  Project grants would only run for three years and then the money would run out and then you’d have a fight with the DH and go to the Press and say “Our charity is about to close down and Ministers would get very worried and then there would be a fix behind the scenes and somebody would find some money in a bottom drawer and they’d rescue you and it was all a mess.    That is kind of how it is at the moment.   And alongside saying that we are only going to do project grants there are still those big establishment charities that go on getting large tranches of money because every time that minister says “I think they’ll take that money away from that very rich, large charity”  seven people in the House of Lords clobber him or her in the corridor.    We are trying to get a bit of transparency within the Department and we have at least agreed that is what we are trying to do. Whether I can push my colleagues to be as radical as I want them to be I have yet to see. 

What I see as the issue, and I will be quite interested to hear people’s views on this, is not that project funding is necessarily a bad thing, and I think there should be some project funding and I think it is the right thing to do, but I think there should be the opportunity for the Department to say:” How does the existence and the work of an organisation in general help the Department’s strategic view?”  “Is this organisation in its intent supporting the Department’s intent and if it is, then we should go back to the ability to fund organisations instead of funding projects.”  Now there would have to be rules around that, we must avoid going back to the situation where you couldn’t withdraw the funding from an organisation. There would have to be stronger rules about exit strategies; there would have to be stronger rules about organisations having a plan to replace the Department’s income over a period of five years or seven years and doing that.  And not going to the Press and complaining that their money has been cut off when it is actually their own fault because they haven’t found other sources of income and so on.  If we could get a robust strategy for funding organisations as well as funding projects I think that would really help the Department to help the more vulnerable bits of the voluntary sector.  There is no doubt that there are some bits of the voluntary sector, particularly consortia, like the Patients Forum, like LMCA, like the Neurological Alliance where it is very difficult to raise money from charitable sources.  I am trying to get away from grants that are not very good but are blessed by tradition and grants which are good but which keep getting cut off, cut back and put organisations at risk and are distorting what organisations do because they are inventing projects in order to get grants.

Finally, in that area of Departmental activities, we are creating a new Centre for Patient and Public Involvement.  We are using some of the money which we have liberated from CPPIH and we have had fourteen expressions of interest to the invitation to tender. Four groups have been invited to put in tenders and that process is ongoing and we hope to have the contract awarded before Christmas.  The contract will be for three years initially with the opportunity for further extension on that contract but we hope, and the intention is, that this would be a permanent addition to the scene, as it were, and its role is primarily to support the NHS in improving its own patient and public involvement.   It will provide some support to Forums but only because they are part of the NHS and it is not its role to replace CPPIH.  Its role is to help PPI leads in Trusts to help PALS, to held non-executives and to help patient organisations to get into the patient and public involvement structures.   I guess my vision of it is to say that the expertise is out there and so the Centre’s role ought to be finding the expertise out there and helping people to mix and match, to learn from each other.

Personal Work Programme

In terms of my own personal work over the last year, in January I published the Review of the Regulation of Cosmetic Surgery, which I undertook for the Chief Medical Officer.  There were seventeen recommendations in that, all of which have been implemented or are being implemented.  The major concerns in the area of cosmetic surgery for us, who are primarily concerned with the Health Service, are twofold.  One is safety and the other is the cost to the NHS of repairing the damage of inadequate and unregulated cosmetic surgery.  We haven’t been able to quantify that cost but if you talk to any of the plastic surgeons who work in the NHS, they will say that a significant part of their work is repairing damage.   The areas where I was most concerned were two fold:  laser treatments and botox treatments.  There isn’t much evidence of risk in relation to botox, seems to be a relatively safe procedure, but there is significant evidence that it is being conducted illegally because botox is a prescription drug and should only ever be prescribed by a doctor for a named patient.  Clearly if you go to a botox party in a hotel and six women have botox there and then, administered by nurses without a doctor present, that is actually against the law.   

What we have done in the regulations is, instead of trying to regulate practitioners, which is difficult, we have decided to regulate the premises.  This is actually more radical than you might imagine.  What we have said is that neither botox nor laser treatments can be given except on premises that are registered with the Healthcare Commission.  That means that you can’t have botox parties, you can’t have botox in your own home, which will irritate a number of “stars” considerably.  They will no longer be able to have a doctor come to their house to administer emergency botox – as one of my celebrity friends calls it!  They will have to go to a clinic which is registered and therefore has proper safety procedures and so on.   That is quite significant and it will have a significant impact on lasers in particular because dentists and so on, if they want to provide laser treatment will have to register with the Healthcare Commission.  

Another area that is causing us a lot of concern is what are called “aesthetic fillers” which are pastes which are injected under the skin to change the shape and remove wrinkles and so on.  Most famous of these, which we all know about, is collagen.  Collagens are made from animal tissue and so there is a theoretical risk of the transmission of CJD through aesthetic fillers.  What we discovered was that these fillers are not properly regulated.  Some of you will have seen a very scary piece in the Guardian ten days ago which said that fillers are being made in China from the skin of executed criminals and potentially being imported into Europe .   There are certainly lots of these materials coming from Eastern European countries. 

Secondly, and two people here I would want to thank, Jonathan Ellis and Frances Blunden, is the Report of the Expert Group on Patient Charges for NHS Dentistry.  This was finally published in July and there is a consultation period that ends at the end of September.   All being well, the transformation of patient charges for NHS dentistry will come into effect next spring with the new dental contract.

Some minor pieces of work:   we’ve done some guidance on filming on NHS premises in order to protect patients and staff from being filmed without consent and in circumstances not appropriate to patient care.  There is a huge amount of media interest in the Health Service and some very unfortunate episodes came to my attention in which patients were filmed during the making ‘fly on the wall’ documentaries without their knowledge and consent and without staff realising that they should have stopped it.  In one case Granada TV paid one person over £50,000 in compensation.  They didn’t sue the NHS because they said they wouldn’t, but they could have done.  That guidance will be on the DH website very shortly.

We have also done a policy paper called ‘Reward and Recognition’, which is about expenses and payments relating to patient and public involvement and particularly how people on benefits can handle the matters, whether they are unpaid for certain aspects of their work with and for the NHS.  It establishes good practice across the NHS, particularly for people who are on low incomes and who it cannot be assumed will buy their train tickets on their credit cards and can wait six months to get their money back.  That has been a bit of a nightmare because we have to check everything with the Department of Work and Pensions but we have endorsement now from twelve different organisations for this policy and we are just getting a Ministerial sign off and then it will be published.

I want to mention the Care Record Development Board.  This is the Board which oversees the ethical and policy issues in relation to the electronic patient record.  It is a Board appointed by the NHS Appointments Commission, which I chair.  It has approximately one third service user members, one third managerial/research members and one third clinical and allied health professional members.  It advises the National Programme for IT on various issues to do with safety and security of patient date, sharing of data and the benefits to be obtained from an electronic system. We have four work streams.  One on “Social care and children,” one called “Records without boundaries, ” which is about how you move between England and Scotland, England and Wales or, even better, can you get your electronic patient record when you’re on holiday in France. Or what happens when you are in the armed forces or what happens when you go in and out of prison.   All of these issues need to be dealt with.     

We have a large piece of work on ‘information governance’ within the NHS and we have a working group which is looking at defining the ‘shared record’.    We have our second annual conference in November, which is open to patient organisations and I know that it hasn’t even been advertised yet and already one hundred and fifty people have booked for it.  If you want to come you need to get booking for that conference.

We published the Care Record Guarantee in May which sets out the safeguards for patients and the public of how our records will be kept secure and safe and how they will be used in the new system.   It is in the public domain and we are open to comments on that.    On that issue, all the papers for the Care Record Development Board are in the public domain on the website.  We publish all our minutes.  We publish all our position papers and we’ve had a small number of Freedom of Information requests and have never refused any.  I am trying to run that as an entirely open process.

Two things finally, my office has set up a register of people interested in taking part in patient and public involvement activities nationally.  I would just like to invite you, if you would like to be on that register, to just let us know.  There is a simple form you fill in which says who you are and how to get hold of you, and any areas you are particularly interested in or any particular issues you have.  You then sign a data protection waiver which allows us to pass your information on to third parties. I am getting loads and loads of requests now from people asking: “Can you nominate someone to be on this group or that group?”    What we are now saying is that we will build a database of people and we will just put people directly in touch with those who are interested.  That is a way of us acting as a dating agency for people in the service side who want to take part in these activities and for people who need patient and public perspectives in the work they are doing.  Email zoe.lawrence@dh.gsi.gov.uk and she will send you an email form.

Finally, slightly controversial surprisingly -  I didn’t think it was controversial until about two weeks ago -  I am doing an internal review for Sir Nigel Crisp on the role of arts in health and whether the Department should have a policy on the promotion of arts in health, or not.  I have a small group of people helping me with that including a GP, and David Gilbert.  We will be taking evidence.  Anyone who wishes to throw rocks is welcome to do so.

I look forward to reporting back again next year.

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