Published: 26/02/2004, Volume II2, No. 5894 Page 3 4 5 6

A US model to empower patients with chronic conditions has proved its worth on this side of the pond.

But will competing NHS priorities hinder its development, asks Mary-Louise Harding

Arron was determined his HIV diagnosis in 1993 was not going to make any difference to his life.

He believed that if he buried himself in his demanding job, the virus would cease to exist.He barely registered that he was rapidly losing weight. It wasn't until he collapsed and was rushed to hospital that his attitude began to change.

Weighing just six stone when admitted, Arron (not his real name) was extremely ill and remained in hospital for months. Two years later, he is not only well and active, but is now a trained chronic disease selfmanagement course tutor, and is one ofa growing number of English patients who have converted to the doctrine of simple, yet apparently hugely effective, self-management of his condition (see case study, page 5).

CDSMC, or Living Well as it is also known, is based on a model developed by California's Stanford University, 'empowering' people with chronic conditions to achieve a better quality of life. It focuses on taking medicines more effectively, improving nutrition, taking exercise and developing more proactive and confident relationships with clinicians.

A generic model designed to benefit patients living with any chronic condition, the course is delivered over a series of six two-hour sessions which are, crucially, led by a trained volunteer who also has a chronic condition.

Having been used by charity Arthritis Care in the early 1990s, its popularity within the voluntary sector blossomed and was adopted by organisations serving people with conditions ranging from HIV to Crohn's disease.

Studies on CDSMC's success in the voluntary sector are strengthened by increasing evidence that medical advances have reduced health services' need to focus on curing acute diseases. The onus is now placed on living with long-term illness, as detailed in the 1999 white paper Saving Lives: our healthier nation.The trend led to a report by a government taskforce, The Expert Patient: a new approach to chronic self-management for the 21st century.

Published in September 2001, the report called for the NHS to empower those living with long-term medical conditions to become decision makers in their own care. It led to a Department of Health commitment of£2m to make the expert patients' programme available nationally.

Since 2002, all but four primary care trusts have committed to pilot the local training of expert patients. They are supported by a DoH unit, led by two trainers experienced in establishing voluntary sector courses.

All pilots are due to be completed in the autumn, after which the process of 'mainstreaming' the programme - effectively handing over financial and operational responsibility to PCTs - is due to begin. In the meantime, the national development team is in the process of leaving its DoH incubator to join the Modernisation Agency clinical governance team.

So far, so smooth. But what is really happening on the ground? What is the reality of establishing a national patient-led training programme by organisations that, while committed in theory to the philosophy of patient empowerment, are more focused on star-rating factors such as GP access?

Lead trainer Jean Thompson, who in effect launched CDSMC in the UK through the national Arthritis Care programme, says the biggest challenge is the 'cure culture' at the heart of the NHS.

'We are trying to put something developed from a social model of disability into a medical-based organisation, which of course creates a tension.With incurable diseases, GPs have to become facilitators of options rather than providers of a cure, which is a problem for an NHS based on acute care, ' says Ms Thompson.

She is currently working with the Long-Term Medical Conditions Alliance to develop a national quality assurance framework for the EPP. The assurance is designed to ensure all volunteer tutors are trained to criteria, and that all courses under the expert-patient banner are accredited and licensed.

The main aim of the pilot programme is to give every PCT an opportunity to run four courses, and test strategies on recruiting and training volunteer tutors; promoting courses locally and administering courses. Its target is to recruit and train 600 volunteer tutors and complete 1,200 courses nationally to feed into the pilot evaluation. The implementation team has trained 28 teams, consisting of two principal trainers per strategic health authority, which have led on recruiting and training volunteer tutors for PCTs.

Though the EPP central team will remain on the payroll for the next two years, from October PCTs are expected to develop a strategy offering a programme to all people with longterm illnesses in their catchments.

Their success at doing so will be specifically evaluated as part of Commission for Healthcare Audit and Inspection reviews taking place from the end of this year onwards.

At least 60 PCTs have now completed the pilot, and, according to principal trainer Jim Phillips, at least 200 are expected to have completed it by July.Mr Phillips says that if PCTs are thinking about long-term public health targets and even forecasting demand for acute resources, they should really focus energy on creating as many expert patients as possible.

Echoing a recent report by the King's Fund on chronic-disease management, which called for PCTs to develop support for selfmanagement as a central feature of disease management programmes, Mr Phillips says: 'If you compare EPP to other patient intervention programmes It is not hugely expensive, at a cost of around£150 per patient.

'Furthermore if you look at research around self-management, you see it slows down symptoms and improves confidence, and the effects are still showing two years after course completion. This means that, from a PCT budget perspective, although there will not be a saving immediately, bringing in such interventions downstream should lessen the impact of chronic conditions in, for example, acute care further down the line.'

Some PCTs are having more success than others in getting courses off the ground.Ms Thompson says the most successful organisations are those with a good understanding of community-wide development work, because they recognise the level of human resources needed for the project, especially in the early stages.

'Some areas, such as parts of Essex, London and Norfolk, have been so successful they have waiting lists for courses. This is because they have a member of staff who is a named co-ordinator who knows their community running the programme, ' says Ms Thompson.

'However, some PCTs are giving the responsibility to someone like a lead nurse, who already has a full work schedule, and expecting them to tag it on the end of their to-do list. This is a major programme and it needs someone who has the time to develop it; and if they do not already have the community knowledge and skills, then they've got time to go out and gather it. Obviously, this will be impossible if it is given to someone who already has a very busy schedule.'

One of the challenges to establishing a successful EPP is effective promotion. Research shows that people who make the effort to find out about such courses with little prompting are likely to be people who are already self-managing their conditions to a large extent.

Therefore, the challenge is to engage isolated individuals who suffer from, rather than live with, their conditions.

Preparing Professionals for Partnership with Public (4Ps, a consultancy partly funded by the DoH) developing a workshop to raise awareness among clinicians who interface with relevant patients - from GPs to specialists to community district nurses.

Bath and North East Somerset PCT assistant director (planning performance and public involvement) Derek Thorne is almost evangelical about the significance of what he calls the EPP 'product' (see box, page 7).He says the need to engage clinicians cannot be stressed enough.

'We absolutely have to find ways to enable clinical commitment, ' he says.

'We need to get them to own it and see it as important. At the moment, It is hard to get GPs to remember to simply give out leaflets, or to spend a minute promoting it to patients who they know would benefit, when they're sat face to face with them. So this work needs to be seen as the clinical governance agenda, rather than the public involvement agenda - which is fine but to really get it off the ground, it needs to be about clinical quality that is owned by the professional academic community and is seen as a priority for change.'

However, how the training is rolled out area by area is, of course, not only affected by clinician 'buy-in'. Barriers vary community by community. For example, more tutors may be necessary in rural communities because of a lack of transport and geographically polarised populations, or some require different approaches because volunteering is not part of the fabric.

EPP has recently begun work to deliver CDSMCs to black and ethnic minority populations.

'We are looking at paying bilingual speakers to deliver courses in some areas, which is part of looking for stepping stones that will take you into minority communities, ' says Mr Phillips. 'Ideally they will be a carer or have a long-term condition. But failing that, we encourage them to bring along someone from their community with a chronic condition, who can train with them and then make cultural adaptations.'

The key theme emerging from pilots is that organisations which make a little more effort to plan delivery of EPP - including engaging with the voluntary sector on delivery - are reaping benefits over and above improvements to the lives of local patients.

LIVING WITH HIV: ARRON'S STORY

I was diagnosed HIV positive almost 10 years ago and the way in which I coped with it was classic avoidance - which I now understand, having been on the Living Well course.

It was easy to immerse myself in work and pretend it wasn't happening.But then I began work on a particularly big project that I really threw myself into, working from 7am-11pm, and I started to lose weight. I didn't accept or realise that it was the HIV - I thought it was stress and I just put it down to overwork - and thought that when this project is over I'll have a nice holiday and I'll feel better.

Of course, that wasn't what happened. I continued to lose weight and even then I made the foolish mistake of not seeing the consultant because I wanted to believe it was something else.

I was fine for about a year but, by the end of 1999, I became very ill and I did not tell anybody.

The following February, I went into hospital and was put in intensive care; I stayed in hospital for about three or four months.

When I came out, I was in a hell of a state - I couldn't walk and my weight had dropped to six stone.

I wish I had taken the chronic disease self-management course when I was diagnosed, because it would have helped me to cope better. I now realise that if I had dealt with it sooner, I probably wouldn't have gone into hospital, or at least wouldn't have been in hospital for as long. I would probably have been able to work full time for a much longer period and perhaps still be working now, because I would never have gone so downhill.

The Living Well course introduced new skills such as relaxation, breathing techniques and positive self-talk, which sounds terribly Californian but is nonetheless very useful.

It was also good meeting other people in the same position. In fact, a number of us who were on the course meet once a month as a little support group.

Sometimes you feel a bit down physically, but it doesn't mean you are also down emotionally - it just means you are not feeling quite yourself that day.The people in our Living Well follow-up group understand what that means.

The course is about managing yourself and managing your illness and I think that means taking responsibility for yourself and your actions.

It also puts [HIV] in perspective with other illnesses.

I have just taken a [Living Well] teacher training course and [the trainees] were not all HIV positive - one person had multiple sclerosis - which clearly shows there are lots of other people out there who have other conditions but the same sort of issues as you.

The tools you learn on the course can help anybody lead a more organised life. It helps you to manage a chronic condition, and helps you to realise that your chronic condition is not the only thing in the world.

HOME ALONE: THE BATH PILOT

Bath and North East Somerset primary care trust, which has been rated a three-star exemplar trust for public involvement, has been running an expert patients'programme pilot for just over a year. It has organised seven courses, training 85 people.

The PCT plans a further eight generic courses this year, to be promoted within primary care, with each based on a single or cluster of nearby practices'populations.

It also plans a series of eight conditionspecific courses, such as chronic back and neck pain and nervous disorders.

The courses are promoted in an 'organic' way, depending on the catchment area.

'We are catching interest where we can by looking for interested groups and clinicians, and basically taking a pragmatic approach:

It is not scientific methodology, It is just doing effective promotion where we can see it will be successful, ' says Bath PCT assistant director of planning, performance and public improvement Derek Thorne (pictured).

He believes EPP will have a significant impact on the spread of resources, in addition to being a very useful way to engage patients in other areas of the involvement agenda.

'My perception is that the NHS community chronically underestimates the potential impact of what We have got here.Basically, this is a healthcare product that is economic and easy to deliver, but will have a potentially huge impact on future healthcare.'

Mr Thorne argues the programme must be on the clinical governance agenda.'We need to get to a point where it is offered to patients as a kind of treatment option, where clinicians are actually prescribing the EPP.

'The scope for engaging people who are home alone, depressed and isolated, which is heavily impacting on their condition, is huge.

'It could be very beneficial to them and thus their demand on healthcare services.'

Mr Thorne has ensured the course is even more cost-effective by building in focus groups at the end of each six-week programme.This offers a wider view on patients living with chronic conditions' experience of local health services.

'My vision is, if you can enable primary care constituencies to own and promote EPP for patients in their patch, the result will be more empowered individuals living in that community.That creates a real scope for those people to influence and motivate others.You start to see a different outlook.

'For example, a guy who came on our last course told me he had shared his learning with a neighbour with a chronic condition, who doesn't get out of the house.

'This is a grassroots example of how EPP can be empowering for citizenship.The NHS needs to recognise this as a very significant product. It is currently seen as a nice thing, and not as a high priority like waiting times - but the point is it will bring down waiting times in the long term.'

Further information

www. doh. gov. uk/cmo/progress/ expertpatient lwww.4ps. com/programmes/exppat/ exppathome. htm

www. expertpatients. nhs. uk/