Comment

The principles of joined-up care

Jules Acton, Director of Engagement & Membership at National Voices, discusses integrated health and social care.

Top of patients’ wish list is joined-up care or integration. This came a strong first when National Voices members worked together to set out the improvements service users most want to see in their care and treatment.

Patients aren’t alone in thinking integration is a good idea. Clinicians are signed up to it, so are NHS managers, as well as politicians of all parties. And, after some pushing from patient groups, integration even got a good billing in the Health and Social Care Act. So is the integration job done now? Can we patient groups all go home now? Well, no.

There is some way to go to making it work on the ground, especially given that the recent results from the Department of Health’s 16 Integrated Care Pilots formed a mixed picture. Among the issues faced by the pilots and by joined-up care in general, is that there is no single definition of integration. This is compounded by the need to improve evaluation across the board. The pilot schemes in question had a range of objectives and think tank The Nuffield Trust, in its commentary on the pilot schemes, says: “It is possible that in the early stages of these schemes, most of the focus was on setting up the pilots, and therefore on internal factors, rather than on the care given to patients.”

The results don’t diminish the need for more joined-up care, but they do point to a need for more work on evaluation, and a particularly pressing need for sound indicators on which we can judge joined-up care. Evaluation must, of course, involve the best judges of all: patients, service users, their carers and families. There are some existing patientfocused care measures, but they don’t quite cut the mustard for measuring integration. Measures like Patient Reported Outcome Measures and Patient Experience Measures tend to be designed around single episodes of care, usually in specific care settings, such as a consultation with a GP, or following a surgical treatment in hospital. There is nothing on the table yet which captures the whole picture.

So there is work to be done and the Department of Health (DH) is sponsoring work to look at patients’ experience of moving across providers. National Voices is part of the advisory group for that research, but we have also called for indicators to be developed with greater pace and priority. In a related development, DH is looking into a ‘year of care’ tariff for long-term conditions. This will pay a provider (or consortium of providers) for a whole year’s care rather than for each episode, giving them an incentive to reduce hospital admissions and establish more coordinated care.

Meanwhile, aware of the challenges in defining joined-up care, National Voices’ members have produced the Principles of Integrated Care. Based on the experiences of service users and on research evidence, the 12 Principles give guidance to government, commissioners and professionals and were recently endorsed by NHS chief executive, Sir David Nicholson.

The Principles describe what joined-up care might feel like from the point of view of the service user. They are prefaced with a statement that encapsulates the views of those at the sharp end of care: “Patients and service users want services that are organised around, and responsive to, our human needs. We are sick of falling through gaps. We are tired of organisational barriers and boundaries that delay or prevent our access to care. We do not accept being discharged from a service into a void. We want services to be seamless and care to be continuous. That means primary and community health services, social care services, and services from voluntary organisations should all mesh together to help us succeed in managing our lives and conditions.”

The Principles’ state that care should:

1. Be organised around the needs of individuals (person-centred)

2. Focus always on the goal of benefiting service users

3. Be evaluated by its outcomes, especially those which service users themselves report

4. Include community and voluntary sector contributions

5. Be fully inclusive of all communities in the locality

6. Be designed together with the users of services and their carers

7. Deliver a new deal for people with long term conditions

8. Respond to carers as well as the people they are caring for

9. Be driven forwards by the commissioners

10. Be encouraged through incentives

11. Aim to achieve public and social value, not just to save money

12. Last over time and be allowed to experiment.

The first principle – that integrated care must be organised around the needs of individuals (person-centred) shows there is no point just bringing systems and structures together, without making the services more responsive to their users. The Nuffield Trust and The King’s Fund say: “Achieving integrated care requires those involved with planning and providing services to impose the patient’s perspective as the organising principle of service delivery.”

This means focusing on the way people access and get involved in their care, and are assisted to co-ordinate it. And it means implementing proven approaches such as tailored information; opportunities to become educated, activated and supported in self management and self care; involvement in treatment decisions; and personalised care planning.

A second principle is to focus always on the goal of benefiting service users – not on benefits to services or institutions. ‘Efficiencies, ‘pooled budgets’ and ‘shared back-offices’ may be happy side effects but they are not goals, and are of little direct interest to patients. The second principle leads to the third: that programmes should be evaluated by their outcomes, especially those reported by service users themselves, as mentioned above.

Our fourth principle is that integration should always include community and voluntary sector contributions. Integration is not just about joining up bits of the NHS, or healthcare and social care. There is a third circle on the Venn diagram, and a significant one. Voluntary and community sector organisations are particularly good at spotting gaps in provision, and innovating; identifying discontinuity, and bridging it; seeing the patient or service user as a whole person, and meeting their needs in the round. Thus – as many patients, service users and carers will witness – this sector is a key ‘integrator’.

Commissioners should not think of third sector organisations as ‘competing’ providers, but as playing a variety of roles. One of these, helping to identify community needs and preferences, can be used creatively to achieve principles five and eight. These are: to be fully inclusive of all communities in the locality; and to respond to carers as well as the people they are caring for. Some of the people with the most complex health needs are from minority and socially excluded groups, who experience poor health outcomes across a range of indicators including health, life expectancy and morbidity. Commissioners will need to design services that reduce these groups’ use of unplanned care by providing access to a co-ordinated mix of mainstream care, and specialist sociomedical services. Carers, meanwhile, often provide the bulk of care and do the main job of trying to co-ordinate fragmented services. Programmes of integrated care therefore should be designed to work with carers as full partners, and to respond to their needs with the same compassion and professional respect that they show to patients themselves.

Our principle six is to design integrated services together with their users.

‘Co-design’ with experienced patients and their groups should be a priority for commissioners among the other potential aspects of public engagement. The cost of creating unwanted or poor value services will be avoided, and the value of care increased if end users are involved from start to finish as equal voices. Again, Third Sector organisations can bring in this expertise.

Principle seven states that integrated care must deliver a new deal for people with long term conditions. In the view of National Voices’ members this should include:

• Access to their electronic health records
• A jointly prepared and annually reviewed care plan
• A designated care co-ordinator able to deliver agreed packages of care
• Support for self-management, and
• Support to navigate the system.

Evidence shows these are effective in improving patient knowledge and confidence to manage their condition and their care; and improving the use of care system resources.

There are four further ‘organisational’ principles: commissioners taking responsibility to drive integrated care; the provision of all possible incentives for people to participate; the need for time and freedom to experiment; and a focus, not on ‘saving money’, but on achieving the best value. Patients want care. They want that care to be humane, and co-ordinated. They are not interested in institutions and their peculiar barriers, drivers and vested interests that can build up over time. These principles should help that to be understood as the foundation of new service design.

The longer we take to join up care, the longer service users and their families will struggle to navigate a complex tangle of care, during what is often the most stressful period of their lives. National Voices members have captured this in care webs drawn up by service users. Some of these are dizzyingly complex and it is no wonder people feel stressed and bewildered at times. It shouldn’t be this hard to get care, and if we all work together to get integrated care right, it won’t be.

(Image copyright Sam Friedrich)

Tell us what you think – have your say below, or email us directly at [email protected]