LONG-TERM CONDITION IDEAS DAVID PINK AND CLIFF PRIOR

Published: 05/08/2004, Volume II4, No. 5917 Page 16 17

We are on the brink of a revolution in patient involvement, but partnerships involving the NHS and support groups must keep pace with 'patient power' if people with chronic medical conditions are to get the best services

The trouble with the NHS, one trust chief executive joked at a recent conference, is 'all the bloody patients'.

Without them, things would run a lot more smoothly.

Gallows humour, perhaps. But it resonates now that we have entered the long, slow build-up to a general election, when all the big political parties say they are committed to handing a flexible NHS back to those who use it.

Some managers, still trying to work out if the 'a' in PALS stands for advice, advocacy or just argument, will welcome the notion of personalised care plans as much as news that one of their consultants has just been caught having second helpings from the canteen sweet trolley.

But like it or loathe it, we are on the brink of a revolution in patient involvement. The first five-year plan led to the electrification of the Soviet Union.

Health's latest one may stop short of setting up patient soviets in every trust, but not by much.

The unintended consequences of the Soviet Union's experiences were devastating and long lasting.We need to start now to prevent the patient power revolution in Britain's healthcare descending into a system that is scorned equally by hard-pressed professionals and frustrated patients.

People are living longer with medical conditions. Already 17.5 million people have a long-term condition. By 2025, that is likely to rise to around half the population. Already, people with long-term conditions account for 80 per cent of GP consultations.

No health service would be able to cope with such demands if it relied solely on professionals 'doing' things to patients. The people using the NHS need to become part of the fabric of the health service. They are the major untapped resource that can save the NHS from meltdown.

That is one reason the LongTerm Medical Conditions Alliance is launching Unlocking The Potential at this year's party political conferences.We want to support the people using health services to get the best from their contact with professionals and to help professionals recognise the expertise facing them when they meet a person with a longterm condition.

We believe that by unlocking their potential, people with longterm conditions can take control of their conditions and can free health and social care staff to focus on those aspects of care that only they can deliver.

There are good examples of these ideas working in isolated parts of the NHS and social care, but they now need to be moved into the front line of everyday service planning and delivery.

Take HIV: a decade ago, HIV services in the UK were about prevention and 'death with dignity'. Today, they are increasingly about living with a chronic but manageable longterm condition.

Who is best placed to understand what that means and help plan the support needed?

The people living with the condition itself, of course.

Today, no-one would suggest that the country's 8 million asthma sufferers could or should be packed off to seaside sanatoriums. Instead, we need an alliance between medical services, public health and environmental professionals and asthma sufferers.

And then there are the longterm conditions of a fluctuating nature, such as multiple sclerosis or severe mental illness. Rethink believes that the contribution of the 630,000 people living with a severe mental illness will be part of the long-term solution for health and social care in this area.

Rethink has already developed self-management programmes, infused its 400 services with a new recovery ethos and works in partnership with bodies such as the Royal College of Psychiatry to develop methods for uniting service users, carers and professionals.

A complicating factor in improving chronic-disease care is the increase in the number of people living with more than one long-term condition. Already, two-thirds of UK residents over the age of 75 fall into this category. For these people, it is even more important that care is organised around each individual and their needs, rather than being arranged along traditional disease-based lines.

Doing so offers potential efficiencies, as well as the opportunity to provide a betterquality service. One-tenth of inpatients who experience multiple long-term conditions account for 55 per cent of all inpatient hospital days.

Furthermore, about 1 per cent of the population use around 46 per cent of hospital resources; and of that 1 per cent, many are people with multiple longterm conditions.

The LMCA has 115 organisational members, representing very different longterm conditions. But many aspects of living with any longterm condition are common to all, even though the NHS treats them differently. So what do people want and how can these wants help professionals?

Our research with member organisations shows a desire for early diagnosis and assessment; high-quality information and advice; positive partnerships with service users across health and social care; and effective treatments that are available to all.

In mental health, we are beginning to see the slow establishment of early intervention services to combat the average 18-month delay from first onset of schizophrenia to specialist support. Delays intensify the long-term disabling effects of the illness while fast and flexible support increases the opportunity for recovering a full and meaningful life.

By 2008, the LMCA wants to see everyone with a long-term condition having access to early diagnosis and assessment from appropriate specialist services, which may be community or hospital based.

We want the NHS to work closely with the voluntary sector and others to produce quality information on conditions, options, rights and responsibilities. Selfmanagement programmes led by lay people, like the expert patients programme, built around personalised care plans devised with trained, engaged professionals are hard to find, but they do exist and benefit patient and professional. This is just one example of the kind of partnerships that, if in place by 2008, would unlock potential.

Too many professionals believe that only they know what is best, and too many people fear their own powerlessness in the first stages of developing a condition.

A minority of well educated, well connected people may see 'patient power' as their chance to further corral limited resources while the poor and ill educated are excluded.

That is why we want the policymakers and regulators - the government, Healthcare Commission and others - to oversee a new compact between government and people that guarantees everyone with a longterm condition equal access to treatments and services.

David Pink is chief executive of the Long-Term Medical Conditions Alliance and Cliff Prior is chief executive of Rethink severe mental illness.

Unlocking the Potential: This is one of a series of articles linked to the Health Hotel, a unique forum of over 25 organisations, including HSJ , forming a lobby group at each of the party political conferences