More power to patients

As long-term health conditions affect an increasing proportion of the UK population, the cost of care provision is a growing concern. Mark Gould reports on current barriers to improvement and possible solutions
Are there ways for people to share the skills they have acquired through managing their own long-term conditions, so that others might benefit from their experience? Photograph: Rex

There are some 15.4 million people in England, almost one in three of the population, who live with some form of long-term condition (LTC) that cannot be cured but can be controlled by medication or other therapy.

Examples include diabetes, heart disease, and arthritis. Managing these conditions accounts for almost 70% of the hospital and primary care budget. But costs are set to rocket due to an ageing population and rising levels of obesity and inactivity.

The Department of Health estimates the number of people in England with LTCs is set to rise by 23% by 2035. How can health and social services cope? This was the subject of a roundtable discussion hosted last month by the Guardian in association with Capgemini.

Attendees included nurses, doctors and patient advocates, academics and representatives of thinktanks as well as innovators from the worlds of science and information technology. The discussion was held under the anonymity guaranteed by the Chatham House rule, allowing for greater openness during the debate.

'We need a massive culture shift and a move from the
medical model of care'

For decades politicians, health planners and clinicians have raised the spectre that conditions of lifestyle, affluence and indolence coupled with a growing elderly population could break the health service.

Solutions for cheaper, more effective, hi-tech care that helps patients stay at home and keeps them out of hospitals already exist. However, part of the problem, according to the roundtable delegates, is that the NHS has trouble with diffusion, that is, efficiently identifying and implementing these solutions.

The "long, grinding process of analysing data leads to a bureaucratisation of good ideas," said one participant.

And, from a political point of view, better management of LTCs such as arthritis or chronic depression, vital in terms of improving an individual's quality of life, doesn't win support in the same way that cutting waiting times or developing new cancer-treatment technology does.

One participant said that improving the quality of care for people with LTCs requires the sort of strategic thinking that major multi-national companies apply to their problems. He said a private company would impose a single mode of delivering care which would be adaptable to local needs rather than the current situation in the NHS, which he described as a "messy hybrid", where you are not sure whether direction is coming from national level or locally. The current system means that examples of local innovation are not picked up and replicated nationally.

The roundtable heard of instances where patients, the NHS, not-for-profit social enterprise companies and private-sector technology companies are coming together to work on new innovations to make life easier for patients, such as interactive televisions that help patients control heart disease or web-based, decision-making tools to help patients decide which multiple sclerosis medicines to take.

New initiatives

At the same time, attendees voiced fears that policies to introduce more competition and choice might stymie integrated care pathways - new initiatives for collaborative care between hospitals, general practices, the community and the third sector which prevent patients falling through gaps in the system.

People with LTCs are experts in their own field and there was a strong consensus that this massive reservoir of knowledge should be exploited and shared. People with one condition can offer valuable insights into the care of other conditions.

"User forums" in primary care or hospitals could be one means of promoting innovation and ideas. "A lot of good ideas begin with words 'don't tell my doctor but ...'," one participant said.

Many speakers felt that part of the barrier to greater patient involvement and empowerment was that the doctor-patient relationship remains "paternalistic and more that of a parent/child relationship", rather than one in which patients are given enough information to make informed decisions about their own lifestyle, care and treatment.

"If people go away from a consultation with the tools and the power to look after themselves, they are much less likely to pitch up in hospital. We know this but we don't value this knowledge in the outcome measures that we use. We know a lot about what good-quality care looks like, but the question is how do we create the incentives and levers that enable us to change the system," said one participant.

Another suggested that changing the system requires the right balance between global incentives for doctors and personal budgets for patients that enable people to decide how much care and where and when they receive it.

Allowing patients greater access to their own health records also changes the balance of power. "You would never go and talk about a mortgage without all your financial information in front of you," was another comment.

People with LTCs are getting on with living while coping with lots of heavy bureaucratic structures around old-fashioned models of medicine, speakers agreed. "We need a massive culture shift and a move from the medical model of care," one said.

Some NHS organisations are testing out how to use the Human Rights Act as a lever for attitudinal and practical changes to the balance of power.

Patient choice

But not all patients want more power. The roundtable heard research by the Picker Institute, which estimates that 25% of people want paternalism, 50% want to be involved, but not necessarily make the final decision, and 25% want to be in the driving seat.

Killing off the culture of paternalism needs to start at medical school where more emphasis is already placed on giving doctors communication skills so that they can motivate patients. But these skills can sometimes give way to paternalism under the time constraints of a busy surgery or where it is "drummed out" of a junior A&E doctor.

Participants want clinicians to motivate people so they have the confidence to self-manage. But in terms of the medical establishment these skills are not held in high esteem. One participant said the solution would be the creation of a new Royal College of Long Term Conditions - a cadre of specialists speaking up for patients and introducing best practice guidance which other clinicians would listen to.

However, defining what is good practice can be complex. One speaker said: "Look at the GP who was imprisoned for prescribing shampoo as medicine. He had a whole heap of patients who stood up in court saying he was fantastic and the best GP they had had. For patients, what is good is the actual experience: the empathy, the waiting time and the environment are crucial. For a clinician, it's the clinical outcomes you perceive and, for the government, it's the headlines about waiting times and access."

The NHS is finally trying to gauge what it has achieved for the patient - the so-called outcome measurement - such as less hospitalisation, more mobility, less pain and better quality of life. As one participant said: "A young patient said to me: 'It takes one sentence and one minute to tell someone they have MS. I can measure your input into my care in minutes, but my life is measured in years.'"

If large numbers of people are enabled to monitor their conditions and receive instant clinical feedback on demand, how do you ensure that it is available 24 hours a day, safely, and operated by the appropriately trained staff?

While the spiralling financial and social cost of LTCs can be addressed in part with new technology and new ways of working that will reduce hospitalisation, patients cannot be expected to look after themselves if they do not understand how their bodies work. One participant concluded: "While doctors get seven years of intensive training we are taught very little about our bodies. We need to educate the public from childhood about their general wellbeing."

• This roundtable was held in association with Capgemini. For information on Guardian roundtables click here

At the table

Malcolm Hart
Business development director, Home Healthcare Philips UK
Tony Bowden
Business development director, iSoft Health
Brendan Farmer
Vice-president, Healthcare Capgemini
Lurline Champagnie
Tory councillor and former nurse,
Nick Goodwin
Senior fellow, policy, the King's Fund
Jo Bibby
Director of improvement programmes, the Health Foundation
Pam Garside
Newhealth, Judge Business School, Cambridge Health Network
Martin Charters
Vice-president, Healthcare Capgemini
David Brindle
Public services editor, the Guardian
Bob Darin
Managing director, BUPA Health Dialog
Katie Ghose
Director, British Institute of Human Rights
Joop Tanis
Head, Health Launchpad Programme, Young Foundation
Rowen Jade
Chair of equality
2025, Department for Work and Pensions
Frances Blunden
Senior policy manager, NHS Confederation
Bernadette Porter
Nurse consultant, University College London Hospital
Kristian Tizzard
Head of service, Advocacy Partners
Jeremy Taylor
Chief executive, National Voices
Dr Rebecca Rosen
Senior fellow, Nuffield Trust

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