For modern health and social care to work at its best it needs the active efforts of both patients and their carers to better manage their health and well-being. The 30% of the population with long term conditions will be much healthier if they play an active role in the management of their own health and care. After a severe operation those encouraged to work with their clinicians in rehabilitation will get better quicker. People with conditions that require them to make frequent visits to hospital can live more independently at home. Throughout the country there are already many practical examples where clinicians have recognised how vital patient and carer activity makes health care work better. If the NHS wants to work with the grain of modern medicine it needs to encourage activity in both patients and their carers.
An 85-year-old woman with two long-term conditions and no relatives living nearby will have a very different capacity to help manage her own health and well-being than a younger woman living with a grown-up family. If we want to work better with more active patients then we need to personalise our understanding of who they are and how the system can, on their terms, add value to their lives. And we need to provide them with a broader range of services to work with.
In July the NHS will be 70 years old. This anniversary gives us the opportunity to renew the contract between the public and its NHS by placing the principle that the NHS is “free at the point of need with equal access for all” at the core of everything we do. The recognition that each of us is a different person with different needs and assets is an important part of that renewal.
Much of this is not new. Famously GPs are taught that when they see a patient it is a meeting of two experts.
Patients know every detail of their personal lives, circumstances, and history as well as a bit about their current symptoms in mind and body. They are the experts on themselves.
The GP is the expert on an enormous range of different conditions and diseases. Between them, if they completely share these different sets of expertise, they will create much better health care and avoid significant suffering. There are one million NHS consultations every 36 hours. All of them work better when the clinician can wrap the care they prescribe around a patient whom they can treat as an individual.
GPs usually have only a 7-minute consultation to work with a patient and begin to uncover their motivation to improve their lives. If the clinician understands how to conduct motivational interviewing they can offer more than a simple exhortation to ‘do more exercise’ or ‘get out a bit more’. They need to discover and work with the, often several, motivations that the patients have in their own lives. Using ‘social prescribing’ a GP can start the process of working with a patient’s motivation and prescribe for a session with someone who can work through activities which would best suit an individual and recommend which voluntary groups or community activities could work best with them. The exercise (or the groups) that are prescribed are based around the personal needs and assets of the patient. In this way the voluntary sector is coming to the aid of the NHS to personalise the social aspects of managing health care. 59% of GPs believe that social prescribing will save them time. And 40% of people living with long term conditions want more day to day support.
Over the last 20 years many people who receive social care have been given control of that care through personal care budgets. The right to hold and spend the money that the state would spend on you gives the patient and their carers the right to control the care that they need. This has meant that people can now ensure that they receive care that fits in with their own personal lives rather than the needs of the organisation that provides the care. In addition, in recent years people with disabilities and other complex health needs have been able, with their carers, to take control of some of the health budget that is spent on their needs. This has given 20,000 people a chance to have a much bigger say in how their health care is developed around their personal needs, and how it is delivered in partnership with their NHS clinicians.
For millions of people who have several long term conditions and also rely on social care, their health and care system is fragmented and confusing. Many different organisations with very different systems expect the patient and their carers to organise their life around the organisations’ needs and around the evidence-based treatment strategies for their individual conditions. For people who are already quite ill this adds a further burden to their lives with no control over when people come into their homes or when they have to go, often to many different places, for appointments. This is why so much time and effort is going in to trying to integrate the different NHS services and social care into a coordinated personalised care service. It’s why giving someone the ability to coordinate their care around their own way of life allows them to create a seamless, personalised service. This has been achieved by giving the individual the right to buy both the social care and health services, ensuring that those services are coordinated around their personal lives. Called Individual Personalised Commissioning it gives people the opportunity to coordinate health and care services around their personal needs.
40% of patients would like more say over the decisions made about their health care. They know they shouldn’t be in sole charge of their health care decisions, but they do want to share decision-making about their health care with their doctors and nurses. An increasing number of clinicians are spending time with patients making sure that these major health care decisions are shared. When shared there is strong evidence that patients have fewer regrets about decisions. This rapport produces a better experience which includes greater satisfaction with the outcome and, crucially for the efficacy of the medicine, better adherence to the treatment regime by the patient.
It makes sense that when patients share decisions about their health care they are much more likely to comply with a treatment regime to which they have already agreed and much less likely to choose risky or invasive and expensive treatments. In other words, shared decision making has a fundamental impact on the safety and effectiveness of personalised care. Involving people in this way not only adds value to people’s lives, it creates value for the taxpayer. If patients are more involved in deciding their care, they are more likely to either take the medicine or carry out the exercise that they need. Saving the taxpayer’s money. The challenge now is to shift the focus of care and support services from ‘what’s the matter with you?’ to ‘what matters to you?’
Personalised maternity care, centred on the woman, her baby and her family, and based around their needs and decisions, where they have genuine choice, informed by unbiased information, is central to ensuring that women received the best care possible.
Personal maternity care is safe care.
It means listening to women, understanding what they want and what they need and putting in place a personal care plan. Women need reliable, consistent and objective information to inform their decisions, and support in understanding their options – including what is known of the risks benefits and consequences of the courses of actions open to them. This will support and empower women to make choices that are in line with their preferences and within a clinically appropriate setting. Doctors and nurses have already set up seven maternity choice and personalisation pioneers to test ways of improving choice for those women using maternity services, including thorough testing of Personal Maternity Care Budgets as a mechanism for empowering women to take control of decisions about their care.
Clinicians, patients and carers have recognized the importance of personalised care in mental health services for many decades. All the partners involved acknowledge that without the activity of patients themselves in developing better wellbeing little improvement can take place. As the partners work together to encourage this greater activity they know that they must understand patients’ personal lives, the specific assets that they have developed over the years, and how those assets can be used to develop greater wellbeing. When it works best this partnership moves beyond mental health services per se to involve physical health services and the wider social inputs of the voluntary sector. Each patient needs their own personal world strengthened by all these interventions.
There are those that worry about the NHS personalizing health and care because they fear it will increase inequalities of health outcomes. They argue that those in the population with greater personal resources will find it easier to interact with this agenda and will therefore get the most out of such an offer and that this will consequently disadvantage others without those resources.
The NHS is a major institution in our society with millions of consultations taking place every week where it can build relationships with individuals who have otherwise been excluded from having a say in their care. When self-management tools are offered to wider groups in society, it is the previously excluded that gain the most from them rather than those who already possess a lot of social capital. What the NHS needs to do is to uncover the personal motivation that exists in all of us to improve our lives and those of our families.
Personalised care has been developed by clinicians across all these different parts of the NHS. Clinicians have developed these different ways of coordinating care around the individual in order to help patients and their carers become more active in their own care. They create a better partnership between clinicians and patients where each brings their different expertise to their care. They encourage the clinician to not only ask the question “What’s the matter with you?” but to consider too the notion of “What matters to you?” in order to find and develop the patient’s motivation to better manage their health care.
Over the next few years the NHS will extend this tried and tested clinical practice to create personal partnerships with more and more people.