Background to the Patients' Council: Getting Heard
There are thousands of patient organisations in the UK. At the most recent count, at least seven thousand, but that figure probably doubles when small, local groups are taken into account.
Public generosity is critical to the work of hospices – which receive no state funding – and to medical research charities as well as hospitals, who often buy medical equipment, mobility aids and furnishings from money raised by patients and relatives.
There is a long history of volunteering to support good healthcare. The WRVS gifted an astonishing £6 million to the NHS in 2009 to improve facilities and patient care: money raised from its hospital cafés, shops and trolley services.
All this demonstrates the public appetite for engagement with healthcare and health services. Yet according to the recent NHS White Paper:
'. . . the NHS scores relatively poorly on being responsive to the patients it serves. It lacks a genuinely patient-centred approach in which services are designed around individual needs, lifestyles and aspirations. Too often, patients are expected to fit around services, rather than services around patients.'
Our plans for change
That is something the College of Medicine is determined must change. A first step for the Patients’ Council is to learn from others who already have a wealth of experience in public and patient involvement, and to set up a network that all patient groups who wish to can take part in and access.
Alongside that, we plan to create a national Patients’ Panel, open to all patients and all members of the public, where ideas and experience can be shared – and the lessons passed on to the decision makers in Whitehall and around the country.
Empowering patients delivers much more than greater satisfaction for individuals who are ill or have a long-term medical condition.
Research demonstrates better outcomes too. That means fewer consultations, fewer prescriptions and fewer referrals too.
Patients who are able to choose how they are treated as well as where, who fully participate in decisions about how their condition is managed, and who are able to adjust their life style so as to fight their disease, can save the NHS a great deal of money.
That might be as simple as learning techniques to reduce stress levels or changing their diet. It might mean learning how to monitor symptoms and make day-to-day decisions on medication or other treatments. What it will definitely mean is a healthier, fitter population, patients who understand how and when to use health services – and when not to – and people who appreciate the cost as well as the benefits of public services.
'Patients have no problem finding their voice. The difficulty comes in finding someone who will listen.'
With the breadth and richness of patient voices, it is puzzling that the health service is still assessed as poor when it comes to patient centredness.
Perhaps the wall between the system and the public, between professionals and patients, is so impregnable it can never be broken down. Patients are expected to know their place – and that is under the rule and under the thumb of their betters.
As National Voices put it in responding to the NHS White Paper: 'Doctors are on their pedestals and patients are on their knees'.
We do not believe this is how most professionals want to work. If patients and professionals work together, we can re-define what good medicine means – and demonstrate how systems have to change to deliver it.
Public and patient involvement schemes: an overview
Public and patient involvement / engagement in health (PPI or PPE) began nearly forty years ago with the establishment of Community Health Councils (CHCs) in England and Wales, but it is only in the past few years that it has become a hot political issue.
Successive governments have introduced various means of promoting PPI, most recently through the Local Government and Public Involvement in Health Act 2007 which established Local Involvement Networks (LINks) and strengthened the duty on all NHS bodies to involve and consult patients and the public in the planning and provision of services. The Coalition Government seems to be fully committed to ensuring a patient-centred NHS, as its recent White Paper makes clear.
There is certainly no dearth of public voices. Among the huge number of patient organisations are large and well-known national bodies like the respected Picker Institute and the Patients’ Association, single-disease pressure groups and organisations linked to research bodies. There are umbrella groups such as National Voices, which used to be known as the Long Term Conditions Alliance and represents around two hundred independent groups ranging from Action Against Medical Accidents and the British Cardiac Patients Association to Chrohn’s and Colitis UK.
Most of the Medical Royal Colleges have active patient networks or partnership groups, notably the Royal College of General Practitioners and the Royal College of Physicians, as does the BMA. The RCP and BMA each have one lay member on their respective Councils. The Royal College of Obstetricians and Gynaecologists has a Consumers’ Forum which includes twelve lay members alongside doctors, while the National Institute of Clinical Excellence (NICE) has a thirty-strong Citizens’ Council.
At the local level many GP practices have set up Patient Participation Groups and these have their own national organisation. Then there are Local Involvement Networks (LINks). These are independent statutory bodies that operate in every Primary Care Trust area in England, funded by the Department of Health via local authorities. Their responsibilities include finding out what local people think about their health services, investigating issues of concern and, with appropriate safeguards, carrying out spot checks of services. All members of the public and community organisations are entitled to join their local LINks as members. The recent NHS White Paper proposes an enhanced role for them under the new title: Local Health Watch.
Scotland has set up Public Partnership Forums in each of its forty Community Health Partnership areas. These are intended to provide a voice for the public and patients within their areas. Community Health Partnerships are required to involve them “as appropriate” in all aspects of their work in planning and delivering health services.
When CHCs were abolished in England in 2003, Wales decided to retain them as the independent voice of patients and the public. They offer information and advice and also monitor the performance of NHS services. They provide support and an advocacy service to patients who wish to complain about NHS care. CHCs must be consulted before any major change to health services in their locality. They, in turn, must consult their local populations to make sure they are properly representing the public view on health issues.
Northern Ireland set up the Patient Client Council (PCC) in 2009, replacing the four Health and Social Services Councils. It has five local offices and its role includes representing the views of the public, promoting patient and public involvement in the planning and delivery of health and social care, and assisting patients who wish to complain about their care.
It is not only through independent organisations that patients have a voice. The NHS carries out annual patient surveys whose results are well publicised, and has set up a website called Patient Opinion where anyone can post a message congratulating or complaining about NHS care. Patients have no problem finding their voice. The difficulty comes in finding someone who will listen.