ANNUAL REPORT 2005 - 2006

Activities 2005 –2006

September AGM held which included a Progress Report on Patient and Public Involvement given by Harry Cayton, Director for Patients and the Public, Department of Health

November Meeting to discuss the ‘Good Medical Practice Review’. Speaker: Farkhanda Maqbool, General Medical Council

January Meeting to discuss ‘Choice, Devolution and Equity’. Speaker: Jessica Allen, Institute for Public Policy Research

March Meeting to discuss the ‘Our Health, Giving Up Smoking ’ Programme. Speaker: Janice Shersby, Department of Health

May Patients Forum Review, ‘Options for the Future’ Consultation

July Meeting to discuss ‘The Patients Voice’ Initiative. Speaker: Baroness Delyth Morgan

Harry Cayton

Director for Patients & The Public, Department of Health

Thank you everyone for coming. When Jonathan said this is my third annual report, I invented the idea that I ought to come annually to the Patients Forum meeting because it seemed a good place for me to be accountable to and to be open with, so that’s what we’ve done over the last three years. It’s been helpful and sometimes challenging and usually I’ve gone away reasonably invigoured to carry on. I was reflecting this morning that my appointment was for three years so I suppose the first thing I should say to you is that I have been re-appointed as National Director for Patients and the Public as from the 1st of September.

I was also reflecting to be honest, that I have not made as much progress in three years as I would like to have done. I’m going to start by saying there still seems to be some enormously difficult problems with the patient-centred health care agenda and with patient and public involvement in terms of public policy which I certainly have not cracked and although I have to say, many people both in the NHS and outside it, have worked very hard on these issues, we still have a long long way to go.

So I’m starting on my second term without any illusions about how difficult the job is and how far we’ve got to go. I think the fundamental issue for me still, is first of all, that we do have at political level, a commitment to this idea. Don’t think I’m in any doubt about that, but we don’t have an understanding of what the idea is that they are committed to, in other words I don’t think people realise how radical patient and public involvement actually is, if you do it. The NHS has an extraordinary capacity to absorb change and not to let anything happen. What I think I’m seeing all the time is the transformation of ideas about patient and public involvement which could be full of impact and driving change and highly effective, into something watered down and ineffective and professionalised.

One of the things I work on a lot, is the Expert Patient Programme and the supported Self-Management agenda, and all the time I see people writing in the NHS about self-management as though self-management was a new thing that the NHS was going to do to them, ie. You….and I keep thinking how can anyone conceive of self-management as something you do to other people, but the NHS can. It’s a new technique for NHS professionals to use. We’ve got a strong representation of the BMA here so I’ll use the BMA as an example. I had a very interesting meeting with the BMA around the Expert Patient Programme and the BMA have subsequently produced a very good and helpful paper on the Expert Patient Programme which was driven by the Patient Liaison Committee. But when I met with the BMA professionals they said, ‘Well this is great, but clearly these self-management courses ought to be run by professionals’. And you go, ‘Well are they sick then?, Have they got long term conditions?, How can you conceive of it that way round?’. I’m really struggling at the moment with the absorbing culture of the NHS and its ability to turn the radicalism and the revolution that we’re driving, into something neutral and sometimes even negative.

I’m sorry to start on a gloomy note, but I wanted to start on an honest note, because that’s been one of the strengths of the inter-changes I’ve had and it’s also always been my strategy with everything I deal with on the department.

So I want to talk about things we have been working on and we are making progress on and where I think the prizes are still to be won. And the prizes are still to be won particularly if we’re aware of how the NHS will change and absorb and alter our good ideas, if we don’t stay constantly vigilant.

Let me start with the thing that’s probably been the most significant piece of work for many of us during the year and that was the review of patient and public involvement structures which was carried out by an expert group which I chaired and which subsequently published a report called ‘A Stronger Local Voice’. That report has been open to some level of consultation and discussion around implementation and we’re collecting responses to it at the moment. There will be significant opportunities for people like yourselves and other organisations to participate in discussions around the governance structures for the new links, and the way in which the contracts are placed and the flexibilities that we want to create in the new arrangements. So quite a lot of detail still undecided about implementation, quite a lot of opportunities for active involvement in that, over the next six months or so.

The expectation is that there will be legislation in the autumn, although we always have to say, if parliamentary time allows, which means that there is still a fight as there always is, to get bills into the Queens Speech. There seems to me to be some very clear imperatives around this, not least as you know, the Commission for Patient and Public Involvement in Health is a statutory body and therefore it can’t be closed down without legislation and therefore any savings that might come from the arms length body review cannot be achieved until legislation…so the government has a pretty strong incentive to find the time for this particular piece of legislation.

What it will do is abolish the Commission for Patient and Public Involvement national body and re-distribute the funds from that to a set of new organisations which will exist at PCT level and which will therefore, I hope, have sufficient funds to fund an office and to pay for some staff and to have some real resources, self-management and self-determination at local level. We envisage these new groups as being a consortia of existing patient and community organisations. We imagine that, for instance, community transport or youth groups or any group who could reasonably claim to have a legitimate interest in health and social care, could be part of the new links. Some people have said to me that these groups look remarkably like something we used to have called CHC’s and I have said I couldn’t possibly comment. But if there were good things that CHC’s had and we were trying to achieve some of those things again, I can’t see why that would be a bad thing. If there are good things in CHC’s and some of them are captured in the new arrangements then as far as I’m concerned that’s a good thing.

The other element of the new changes we need to be clear about, is that we have committed ourselves to strengthening what is now section 11. That’s become a very interesting issue because of the recent North East Derbyshire ruling, although if you unpick the North East Derbyshire ruling, it’s relatively narrow in its scope. Nevertheless I think that gives us some hope that section 11 as it currently exists, has been made to stick in law and that new legislation will also have sufficient teeth. The second thing is that we are looking to strengthen patient and public involvement in regulation and the Health Care Commission and its successor body when the Commission for Social Care Inspection is merged with it, will be charged with ensuring that it really does regulate on behalf of patients and the public and not solely against standards and against safety and so on…but actually looking at how organisations that provide NHS services involve patients and the public.

We’ve also in the report, subject to parliamentary scrutiny, tried to make clear that we expect the private sector and independent sector providers, so that’s the charitable sector as well, who are providing NHS services, to meet the same standards of patient and public involvement that NHS bodies themselves have to do. That may be quite a difficult thing to achieve politically.

There’s another element in that which is not part of my responsibility at all, but which many of you are involved in, and that’s the discussions around creating a National Voices organisation. We have strong ministerial support for that and there is a group set up by the voluntary sector, chaired by Delyth Morgan and I’m sure some of you are taking part in that, and I’d be quite interested in hearing back from you about the discussions around that, and having some opportunity to talk about that if you wanted to do so. I am keen to see such a body happen, but only of course, if the voluntary sector wants it to happen and if its thought to be useful to the voluntary sector and if it can be brought about. I am hopeful but can’t promise, of finding some departmental funding to go towards it.

So that’s the big piece of work on patient and public involvement.

I’ll also talk about the Expert Patient Programme and about the general thrust around self-care.

We have established now in the department at officials level, a Self-Care Board and No Smoking Board which is co-chaired by myself and Gary Bellfield who some of you may know in the department. The purpose of that was to bring together all the different bits of the department who were doing some sort of work on self-care and self-management to try and get them to have a better understanding of what self-management actually is and what they should be doing and how they should be co-ordinating their policy around it. It’s beginning to have some impact in the department. It’s early days, but it does at least mean we’ve got a vehicle for having a quality check on what people do and say about self-care, whether it’s in older people or mental health or diabetes. As you know the department is still, slightly unfortunately, divided into policy chunks that mainly relate to disease groups or conditions which often seems to me, to be quite an old-fashioned medical model of the world. But as we clearly know, the voluntary sector is also, to some extent, divided up in that kind of way.

Within that, the work has been going on in the Expert Patient Programme. If we go back to the last election 2005, in the manifesto, we secured a commitment which really John Hutton was responsible for, to treble the investment in the Expert Patients Programme and we’ve actually now found the money which, in the circumstances is quite extraordinary. The Expert Patient Programme budget for this year is £13.5m and there is potentially more money next year. What we are trying to do is launch the Expert Patient Programme and free it up from the bureaucracy and accounting and the dead hand of the department…and so we have turned it into a community interest company, that’s a not-for profit company, charged with delivering courses in self-management, with a target of trying to deliver over 100,000 courses a year – very ambitious target. We’ve just appointed the new non-executive directors. There was a press release a couple of days ago about the appointments. I attended the first meeting of the Shadow Board yesterday. We’re in a slightly odd position at the moment, where they exist as a Board but the company doesn’t exist. We just signed off the company documentation yesterday, so although they make Shadow Board decisions at the moment, I’m responsible for implementing them. We hope the company will be set up before the end of this month. We will then transfer the funds to the company and it will then be free to work in the voluntary sector, in the NHS and wherever it feels it can do effective work in promoting self-management.

I think they’ve got a difficult job because, as we know, there’s a huge agreement in the patient community about the value of self-management and expert patient courses, but there isn’t the same level of agreement at clinical level and in health organisations. But they are very good people, the Board, and hopeful. They’ve certainly, with this kind of dowry of funding, got a pretty good wind behind them. They’ve got a lot of support from the staff and volunteers in the Expert Patient Programme. So that’s been a big piece of work, mainly for Zoe Lawrence who heads up my office. That’s taken quite a bit of time because it’s the first time we’ve done this. It’s involved us in all kinds of very complicated things including, of course, regulations and pension arrangements for our staff.

One other thing I’ll just mention…if I say it’s relatively minor, it’s not because I think the content’s unimportant but, at the end of last year and the beginning of this, at the request of Nigel Crisp, I carried out a review of arts and health which was done with the Arts Council and we produced a report in February which unfortunately, coincided with a little local turbulence. It did get signed off by Nigel on his last day but of course didn’t quite have the buy-in from the new acting Permanent Secretary that it had from Nigel. So we’ve struggled a bit with that, but the proposal is, that we will publish jointly with the Arts Council what we’re calling a ‘Prospectus for Arts and Health’ which sets out why the arts have a role in health and what that role might be, and encourages the devlopment and the use of arts in health. At the moment we’re still hoping to do that at a joint launch some time in October with both ministers from the Department of Health and from the Department for Culture, Media and Sport, which is responsible of course, for the arts. It has been very interesting and very stimulating and rather cheering in the midst of all the dark stuff, to talk about and see some fantastic projects using arts in a whole range of care, and also the very important influence that the environment has on healing and well-being. This is an interesting area for patients to think about because the other thing is, that whenever you say arts and health, there are some patient organisations that leap into the media and say ‘What a waste of money that is, that’s a terrible thing and for the cost of that piece of art we could have had two nurses for ten minutes’. I think the patient organisation world should reflect a bit on its own position around the arts and health and decide whether it really is a good thing to be knocking the NHS every time the NHS spends some money on the quality of the environment, an arts event or on an Arts Co-Ordinator. I’m not claiming that the famous polished rock just round the corner outside UCL Hospital is the finest piece of public art I’ve ever seen, but the way in which the Arts Co-ordinator there who works part time, who costs about £20,000 a year, whose salary is actually paid by a voluntary organisation, who used to work at Addenbrooks, who is a really nice young artist who likes working with the health service; the way he was pilloried in the press, the way he was abused in the Sun, I thought, ‘what is this for?, how does it help?’. I won’t name names but most of that was driven by one of the patient organisations. So we need to reflect what the role of arts in health is and whether we as patient organisations care about it or not. Because if not, we better say so and not bother with it.

To move on, this is a piece of work which I spend more time on that I would like, and that’s the National Programme for IT and in particular the creation of the Electronic Patient Record. I’ve just come this morning from chairing the ministerial taskforce on the Summary Care Record which is charged with trying to reach a resolution primarily with the BMA GP Committee who are currently taking a position that would mean that the electronic record couldn’t go ahead. However, I should say we had a very constructive start to our discussions this morning.

Let me start if I may, with a few facts, because there is a lot of mis-information that goes on around this. This is the largest peacetime IT project in the world. It is costing over quite a long period of time, around £6.5 billion to build and around £5 billion to install, manage and implement through the NHS. Those are big sums, but in terms of the budget of the NHS, spread over ten or twelve years, they are not quite so big sums as they feel as headlines. Secondly the National Audit Committee Report gave the programme a pretty good clean bill of health. I think it’s really worth saying that, because you’d never believe that from what you’ve read in the press, who looked for all the negatives and for all the things that weren’t going right. If you look at the size of this programme and if you look at what the NA Report says, it is really quite impressive. That is not to say there are not problems, there are some major problems. There are some major problems with suppliers and here’s an interesting conundrum. For the first time, we have a model project, where, when things go wrong, the suppliers are responsible instead of the purchaser. Normally in public projects, things go wrong and what the government does is throw money at the supplier who under-priced in the first place and then says ‘I can’t do it, you have to give me another £150m, £200m, £500m’ and we do. Our problem here, is we actually have contracts which don’t allow us to do that, and some of the suppliers are finding this very difficult. I’m not saying there’s an easy solution to that, but I think it is worth really understanding that this is because the programme protects public money rather than wastes it. And because it’s very difficult for the programme to start giving the supplier more and more money in order to deliver what they said they’d deliver for a fixed price originally. So there are some delays now emerging in the system because the suppliers have been unable to build what they said they’d build, in the time they said they’d build it in, for the price they agreed to build it for. That’s a problem for the programme but it’s a problem because we’ve got good contracts and we have to work through those.

From my prospective, I chair the Care Record Development Board which is charged with managing the ethical policy implications. It’s a publically appointed board, we rotate the membership every year. We had over 180 applications this month for four places for the coming year, which makes me feel people can see we’re both an interesting place to be and also an important place to be. We’ve got some very high quality candidates this year as indeed we did have last year. About a third of our members are patients and the public, about a third are clinicians of various kinds; speech therapists, pharmacists, paedeologists and so on, and about a third are people either from the IT world, research, management or ethics. The advantage of the delays to me, is that work with the Care Record Development Board is difficult and slow, should have been done five years ago and the fact that we’re doing it now and the programme’s delayed, means we can actually go ahead of some of the decisions and some of the implementation.

The most important thing we’ve done is produce the Care Record Guarantee and if you haven’t seen that, I strongly urge it on you. It’s available on the Connecting for Health website. That sets out for patients and the public, the safeguards, security and rights that patients have or will have in the new system to withold the sharing of their information and to control how their information is used in the new system and what redress they can have if things go wrong. That guarantee is already accepted by the NHS. It is the principles on which the NHS is working now but it’s been written primarily for use when the National Care Record service comes into operation…which will be in a very small number of pilot sites early next year, probably only two PCTs in the country initially. The public in those areas, will be fully informed before it happens and that’s the planning work that I’m doing with the taskforce.

The four work streams that the Care Record Development board has and again, these are open to people who want to be involved in them, are; work on children. How do we develop effective electronic records of children? What do parents need to know about their childrens records? What control will children themselves have over their own records? How do you handle issues say around gillic competence and so on when you’ve got an electronic record system? Quite a lot of important issues around child protection. We’ve got a group looking at the inter-face with social care. How do you develop good standards, quality, ethical guidelines and confidentiality procedures around sharing between health and social care? And the single assessment process is a very good model for trying to work through those issues. We have a group that’s been looking at the summary record and it’s the summary record that’s the bit that will be shared. The detailed record, the record that has all the things your doctor knows about you, won’t be shared. Only a summary of your record will be shared and the summary will contain a relatively limited amount of information. I think too limited an amount of information, I’d wish to have rather more of my information shared than just the information I know already myself, but we need to move slowly on that. And we have a group working on research and secondary uses and the way in which data can be anonymised for research purposes and for say, the National Patient Safety Agency to get safety data and those kinds of systems.

We are having a conference in November, I believe the 23rd and it’s at the Business Design Centre and I would strongly urge you to come. It is going to be aimed specifically at patients and the public and at trying to communicate better with patients and the public what the issues are around the NCRS and the new electronic systems. I think there may be a charge but I also know that if there is a charge, there are bursaries for patient organisations or individuals who can’t afford to come of their own accord.

Final thing to mention, we did a review of dental charges a couple of years back. That was implemented in April of this year with a new simplified charging system. I think we can say that we were all reasonably happy with the structures we created, but we were disappointed with the way it was implemented, particularly in terms of the banding and the way in which the government went against the recommendations of the taskforce about the balance of the bands.

Nevertheless you can imagine I sat there somewhat in trepidation on the 1st April having been to my own dentist a little while before where he’d said gleefully, ‘You’re all over the front page of Dental News’ and proceeded while my mouth was full of metal, to harangue me with his personal opinions on the new dental contract and a lot of things that I was not responsible for. I did think this was mixing business with business in a way that I didn’t really fancy and I haven’t been back to him since! But you know there was a sense that the sky was about to fall and it hasn’t fallen. There are still major problems with the supply of dentistry, particularly in some areas of the country. I visited a dental practice recently and there was the statutory notice, our statutory notice, up on the wall. I asked ‘What do your patients think abut the charges?’ and he said ‘No problem with the charges, it’s the contract I want to talk about’. So I’m not saying that has gone completely smoothly, I’m not saying that dentistry is an issue that has been solved, I think it’s going to come back for the election almost certainly as a major issue, but the charging structure I think, has been a reasonably successful improvement.

However we are now having a look at opthalmic services and that’s not being done in quite as formal or public a way, but there is a review going on, particularly in trying to bring opthalmic services into the community.

So I think I will stop at that point. I am grateful for your attention and will now be happy to answer questions. I’ll be interested to hear if there is anything that can be reported about the progress on the National Voices work. Thank you.

Chair’s Report

It is a commonly expressed view in health policy that if you stand still for long enough, policies from governments past will soon be dusted off and reintroduced as the next big thing. This year has certainly seen no shortage of ideas, developments or initiatives, both old and new, continuing to give those of us with an interest in health policy plenty to deal with. Whether it has been the latest development in commissioning, in NHS reorganisation, or in patient and public involvement, Patients Forum members continue to be very much in demand when it comes to policy development and implementation.

This year as you all know, we have been considering where the Patients Forum should go in the future, and how we can provide better support to members to enable them to improve health care policy and practice on behalf of their constituents. We now have a work plan for the coming six months that we will be sharing with members at the AGM in September, that we believe will help us to take the Forum’s work forward, and to reshape the organisation to better reflect what it is that our members have told us they want.

A Changing World

Health voluntary and community sector organisations have never been in greater demand in health policy. Whether as consultees, as partners, or as providers, the role of Patients Forum members is changing fast, and the Patients Forum must change too to make sure that we continue to provide opportunities to network and to influence policy and practice in the future. The review process was therefore both opportune and necessary, and has enabled us to address some of the big questions about the Forum’s future role.

Through this period of reflection, of course, the health policy world has continued to turn, and our review process has not been occuring within a vacuum. Particularly relevant to our thinking has been the discussions this year within the health voluntary sector about what sort of ‘national voice’ is needed for the sector to better influence policy. The Patients Forum review work has been very timely for these discussions, and we will continue to work with other organisations to explore these interesting and challenging issues.

The Forum’s Role

The Patients Forum exists to provide our members with opportunities to influence policy and practice, through networking and information sharing, and by creating opportunites to engage with policy developments at an early stage. With such a busy and crowded policy agenda, it is ever more important that the Forum can help our members to keep abreast of developments, and for them to be able to expect the Forum to act on their behalf where that is the most appropriate way of achieving influence and change. The Forum will be increasing its policy capacity in the future, so that we can better meet these needs.

Building Capacity

The one thing that all of our members have in common is a lack of time and capacity. A key role for the Patients Forum must be both to build capacity, and to lighten the work-load by taking on those issues that members feel it would be appropriate to do so. To achieve this, the Forum itself needs to develop and strengthen its capacity. Over the coming six months, we will be appointing an Interim Director to help us to achieve this shift.

Setting The Agenda

It is a great temptation in health policy simply to react and respond to the agenda as it emerges. One of the greatest strengths of the Patients Forum is the diversity of its membership, spanning a broad range of patient interests and experience, and a full range of organisational types. To make best use of our individual and collective expertise and knowledge, we will be developing mechanisms to enable members to set the proactive agenda that you wish the Forum to take forward on your behalf, and then actioning those priorities with you.

Working Together

There is great strength in consumer health bodies working together to achieve their goals. Whether that is through ad hoc alliances around particular issues, or through the sort of networking and information sharing that the Forum provides. It is equally important for networks and alliances to work together, in order to minimise duplication and to maximise impact. The Patients Forum has been discussing this with our friends at LMCA, and others, and will continue to work together in the coming year.

A New Patients Forum

It was clear from the review process that members saw the value in the Forum, but that they wanted the Forum to be sharper, more focused and more active. In the coming months, we will be working with our members to shape a ‘new’ Patients Forum that meets these goals, that provides our members with real opportunities to influence, and which helps to increase our collective capacity to act in the interests of patients and service users. The goal is now clear. The exciting challenge that we now face is in the delivery.


As ever, I must extend my thanks to the members of the management committee who have all worked so hard over the previous year to help the Patients Forum move forward. In particular, I would like to extend my thanks to Brian McGinnis who, after many years of advice and guidance, stood down this year from the management committee.

I would also like to express my thanks to Diana Basterfield, for all her work over the year which has kept things moving. Diana will shortly be leaving the Patients Forum. She will be greatly missed, and I am sure that I can speak on behalf of all the Forum members in thanking her for her support and dedication over the years.

Finally, and perhaps most importantly, thank you to all of you, who, as members of the Patients Forum, make it what it is. I am especially grateful to those of you who contributed to the review process by sharing your thoughts. I have been pleased to be chair of the organisation at such an important and exciting time, and I look forward to continuing to work with you all as we move in to the next phase of the Patients Forum’s work, with all of the associated opportunities and challenges ahead.