Taking control – our role in shaping the future of care

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Part of Time to Think Differently

We began our Time to Think Differently debate with a focus on the patient, and now we are bringing it to a close with a focus on the role we will play in our own health and care in the future.

Roy Lilley focused on the patient as consumer and our growing desire to experience care in the same way we experience other services – at convenient times and places and using the latest technologies. He rightly points out that businesses in retail and banking have often empowered the consumer because, in the end, getting us to do things for ourselves makes business sense. Is there a business case for empowering patients in health and social care? This week, NESTA estimated that the NHS could realise savings of £4.4 billion a year if it adopted a range of innovations that involve patients in their care.

Given the volume and passion of responses, Roy's blog clearly struck a chord. But not all of us see ourselves as health consumers. In the second blog in this series, Roger Taylor argued that many patients 'simply don’t want to hold their doctors to account or get involved in decisions about their care. … It cuts across our most fundamental desire to put our trust in those who care for us.' Indeed when we are sick, vulnerable or confused we want to be cared for. And many of those caring for loved ones with dementia or other illnesses at home already feel that they are doing as much as they can and could not imagine doing more. Direct payments, personal budgets and care planning are all tools designed to give patients more direct control over their care, but they are not for everybody.

And yet even at times of vulnerability it is vital that we are involved and engaged in decisions about our care and treatment. Jeremy Taylor, Chief Executive of National Voices, reminded Roger, ’There is good, long-term evidence that a persistent minority of patients (and about half of hospital inpatients) are not as involved in decisions as they would like.’ Excuses abound about shared decision-making and why not to do it, particularly from clinicians who believe it is time consuming and expensive, and that patients don't want it. Angela Coulter addressed these excuses head-on in her paper for The King's Fund, and Al Mulley and colleagues powerfully argued that clinicians need to 'diagnose' patient preferences before recommending a course of treatment.

 This idea of partnership – so strong throughout the blogs and debates – is at the heart of the future of our health and care system. As Christina Patterson said in our first blog, 'What we will expect in this partnership is a relationship that works both ways. We will expect to do more to keep ourselves well. We will expect the health service to provide better systems to help us when we're not.' Dr Havi Carel, in our final guest blog, identified the need for patients and clinicians to 'share a genuine understanding of the patient's life' and to recognise the shared goal 'to live well'. In response to this, Nigel Horwood, a patient, described this partnership, 'When I enter a consulting room I expect an equal partnership with my consultant and that decisions affecting my health are made jointly. The consultant brings the medical knowledge, experience and expertise to the partnership and I bring my history from 35 years of living with a chronic condition and the knowledge of my personal circumstances, attitudes and lifestyle which will have a bearing on any decisions that we make.' Too few patients experience this partnership routinely in their interactions with the NHS and social services.  Providers often focus on achieving clinical goals or financial performance.

Perhaps now is the time for a fundamental reorientation of the health and care system to focus on living –and dying – well and for establishing a new partnership between those providing care and those needing care and support, themes to which the Fund will return later in the year. As services are redesigned it will be critical that those of us who want and can do more are empowered to do so, AND that those of us who don’t are supported and encouraged to become more confident as active partners in our care. If such support is not made available, inequalities may widen as empowered patients take the opportunities presented to them to take control.

Changing these interactions and power dynamics is not easy and yet it’s critical if we are to establish a care system that is both responsive and sustainable. Some of the changes required are to the process, for example, routinely doing care planning or giving people access to direct payments or personal budgets. Others – such as the changes needed to strengthen shared decision-making – depend on changing the attitudes and behaviours of both users and staff. Critical to this is whether professionals feel they have the skills to work differently with patients, users and their families.


Sue Chambers

Early Years Consultant,
Member of Addison's Disease Self Help Group
Comment date
18 April 2013
People with Addison's have to be expert patients because so few doctors have had sufficient experience of working with them. All too often in hospital (on wards and A&E) their steroids are taken away from them and not administered appropriately. Doctors and nurses must learn to listen to their patients especially those with rare and life-threatening diseases. We actually know best how to manage our condition. We are not hypochondriacs - just experts. For case histories of what goes wrong in hospitals when doctors do not listen to Addison's patients and the consequences please visit the Addison's website www.addison's.org.uk

Helen Whiteside

Medication Review and Care Home Pharmacist. Independent Prescriber.,
Comment date
18 April 2013
care and healthcare support needs to be at patients and populations convenience with efficient and safe systems & technology but MUST be provided consistently by competent providers and professionals. if inadequate or out of date skills or knowledge in the right place - still no positive outcomes & potentially harmful ones. We need the right skills and knowledge at front line to produce right outcomes e.g. in community pharmacy many need clinically upskilling or need to strongly consider if need employ clinical pharmacists/ technicians. Need a plan by professional bodies to create and ensure a competent profession is available to deliver this valued and needed NHS service. This must be renumerated appropriately in comparison to other businesess and professionals within Nhs

Veronica Beechey

patient, researcher and ex-lead governor at UCLH,
Comment date
21 April 2013
Two key elements of The Francis Report are relevant to this question. Cultural change is essential to transform how care is delivered, and listening to patients is fundamental. If all clinicians were to develop the kind of partnership working discussed here they would need to learn to listen to their patients. Only then would they be able to judge how much control individual patients (and any relatives, friends or carers who support them) want to exercise and in which areas of their care. Properly done this will take time as well as skill, and time is something which is in increasingly short supply in today’s cash strapped NHS.

Older people and those with multiple chronic conditions are major users of the NHS and social care services. Finding ways to make NHS care less fragmented for such patients is essential if they are to have more control. Nigel Horwood’s description of partnership working is inspirational. I suspect however that it is unusual, especially in large busy acute trusts. If you add primary care, community services and social care into the equation it can be hard for patients to keep abreast of appointments, administrative issues etc and easy to loose any sense of mastery or control over their care.

Qualitative research undertaken by UCLH governors identified several points where patients feel they lack control over their care. These include (i) transfers between local district general and specialist hospitals and (ii) hospital discharges where it is often unclear who is responsible for different aspects of a patient’s care. Those who need social care on returning home also have to navigate a system which is often confusing and disempowering.

Partnership working is crucial but to make it meaningful services will have to become less fragmented and communication between providers as well as between professionals and patients will need to improve. From a patient’s point of view good partnership working requires health and social care staff to have a range of skills, including compassion and good listening skills as well as excellent technical skills. Organisations also need to have efficient and patient-centred administrative processes.

Dr Malcolm Rigler

NHS GP and Health Ambassador at The Patients Association,
Partners in Health ( Midland) Ltd.
Comment date
12 July 2013
Helen Whiteside who has written above is absolutely right. The profession of pharmacy urgently needs to be drawn into this development work. Led by Andy Murdoch at Lloydspharmacy and before the coming of the internet , pharmacy based CHAT centres were a very positive way of "supporting the GP consultation" . Now GPs, Pharmacists , Health Visitors and Hospital Consultants can all look forward to the day - soon I hope - that they will be able to issue "prescriptions for information in any language spoken in the UK" . Prescriptions that will be "filled" by health and social care information librarians( all with a nurse background) that will be "on-line" or based in High Street shops/community libraries and maybe mobile libraries in rural areas where proper attention is given to creating a "convivial space" and a "learning environment" . This free access to information and learning opportunities for patients and carers will allow us GPs to fulfil the demands of the GMC to provide "information in language and terms that patients can understand" , it will also secure a much improved "patient experience" and give managers the necessary feedback from patients and carers that will allow them to modify and improve services in response to real live patient feedback . The NHS Litigation Authority also has much to gain from this development and needs to be "on board". All that is needed therefore is for Senior NHS Managers and the Association of Chief Librarians to get together to flesh out the developing "Libraries and Health" initiative that is starting to take shape in the UK and support a range of "pilot projects" to witness the great change for the better in " Patient - Health professional" relationships that will come about when patients are "fully engaged" in their treatment and care as the Wanless report recommends and as patients that benefit from "guided websurfing" at Maggies centres will testify.

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