A fundamental reorientation of how services are commissioned and delivered is required if the NHS is to better empower patients and their carers to manage and make decisions about their own care and treatment, write Jim Phillips and John Worth

Self-management support and personalisation through care planning and shared decision making have become core parts of NHS strategy. NHS England’s objective to ensure the NHS becomes dramatically better at involving patients and their carers, and empowering them to manage and make decisions about their own care and treatment has to be welcomed.

‘Currently the NHS does not yet seem brave enough to make the leap of faith needed’

The NHS mandate states that achieving this objective would mean that by 2015: “Far more people will have developed the knowledge, skills and confidence to manage their own health, so they can live their lives to the full.”

The key question is not so much do patients and their carers have the confidence, knowledge and skills, but does the NHS have the knowledge and skills to deliver on this in a way that will be genuinely transformational rather than a medicalisation of the personalisation drive?

Lack of experience

The Quality Institute for Self Management Education and Training recently held a series of workshops for organisations providing services such as self-management support, care planning and shared decision making. The organisations that attended reported some significant issues around this agenda and concluded that, currently, the NHS, while it has learned the language of personalisation, does not yet have the experience.

The Wagner model of chronic care and more recently the “house of care” model provide the blueprint and map for the forward journey, yet currently the NHS does not yet seem brave enough to make the leap of faith needed. 

If self-management support and personalisation are to be effective it will require a fundamental reorientation of how services are commissioned and delivered. However, it goes deeper than this. Currently the onus is on the patient to change their beliefs and behaviour, yet these are often created by the NHS itself and the promises of modern medicine.

‘If we are to be serious about personalisation then prioritising people’s personal goals should become paramount’

Just as important is a fundamental change in the beliefs and attitudes of those providing the service. Perhaps part of the reluctance to embark on these changes is because they require a fundamental shift in health workers understanding and self-perception.

These aspects are too often ignored in the large scale rollout of training for NHS staff with the inherent danger that these tools become a tick-box exercise, subjugated to achieve the clinician’s or the service’s predetermined outcomes, rather than based around what is important to the patient.

If we are to be serious about personalisation then prioritising people’s personal goals should become paramount. 

Ignoring best practice

At present it would appear that best practice is being ignored in order to fit self-management into to the current configuration of services. This fundamentally misses the point and means the full benefits are not realised.

Many of these services may well benefit from being delivered by trained lay people who do not have to unlearn many years of training and culture; facilitating the patient to solve problems as opposed to the current situation where the professional is the expert who provides the solutions. This is a subtle but fundamentally important difference.

But if innovation within established organisations or corporations is hard, it almost becomes impossible within a system such as the NHS, riven as it is with such a legacy of complexity, competing priorities and politicisation of health reform

‘There is a need for brave and radical ideas and innovation to be supported in the NHS’

It may be that the NHS needs to look outside of itself for the solutions and the necessary radical and potentially disruptive innovation to achieve the change that is needed.

If self-management is to be successfully systematised and if large numbers of people are going to become confident managers of their health, capable of making informed decisions and working in partnership with healthcare professionals, then there is a need for brave and radical ideas and innovation to be supported in the NHS.

There is an urgent need for input not from large multinational healthcare corporations but from micro and small businesses and entrepreneurs to make this happen. Often these micro businesses are set up and run by people with significant experience of living with a long term condition and borne out of their frustration with the current status quo.

Need for localised support

The NHS must find ways to better stimulate support for entrepreneurship and involvement in healthcare at localised levels so that micro businesses and small businesses can operate in financially viable ways.

It involves industrialising the work of programmes such as the Year of Care and Co-Creating Health, building on the learning from initiatives such as Nesta People Powered Health, harnessing the outputs of initiatives that have already trained many thousands of lay people who can readily support other patients.

These people should be encouraged to work as micro businesses working within national quality standards and to be part of a vibrant self-care ecosystem and healthcare economy. 

Jim Phillips is director at the Quality Institute For Self-Management Education and Training, John Worth is CEO at Know Your Own Health