Patient Concern is an organisation committed to promoting choice and empowerment for all health service users.
Our core principle is complete consumer independence. Unlike some associations representing patients, we do not accept funding from any vested interests, notably Government, NHS or commercial organisations. Nor do we involve anyone dependent on the healthcare service for employment or business.
To make sure that there are no conflicts of interest, Patient Concern has special advisers by invitation and supporters who contribute their time, expertise and experience free of charge. This facilitates a totally patient-oriented approach.
We operate as a network. Contributors include patients, their advocates, carers, lawyers, patient representatives, journalists, ethicists and human rights activists. We keep in close touch with other active campaigning groups run by patients. Implementing our programme relies on the dedication of volunteers and donations, free of conditions, from well-wishers.
Patient Concern is active in all areas of the health service, campaigning on issues that matter to patients and making the patient’s voice heard in top level consultations.
MEET THE FOUNDERS
Joyce Robins BA – as a successful journalist and author of 30 non-fiction books, Joyce took a particular interest in health care matters and ran major investigations into the working of the NHS for national magazines. She now devotes herself to vigorous campaigning on behalf of patients and producing user-friendly information leaflets. She has spoken at medical conferences all over the country, making sure the viewpoint of patients is heard, sharing billing with leaders of the medical profession such as President of the General Medical Council and the Chief Medical Officer of the NHS.
Roger Goss MA (Cantab) – set up and ran a patient helpline for three years and has organised a number of patient-centred campaigns. He serves on various Department of Health, NHS and Royal College committees and working parties. He is a former member of a Community Health Council and was only the second non-medic to be invited on to the British Medical Journal (BMJ) Editorial Board in its 150 year history..
WE ARE CURRENTLY INVOLVED WITH
Department of Health: through membership of a special working party, advising on what would constitute a patient-friendly system of access to our healthcare records.
NHS Estates: via their patient advisory group developing hospital food and housekeeping services, contributing ideas on improving meals and hospital hygiene.
Royal College of Anaesthetists: we have helped to produce the first patient leaflet detailing the choices, pros and cons of various forms of anaesthesia, their risks and side effects.
Lord Chancellor’s Department: trying via the Making Decisions Alliance, of which we are a founder member, to secure legal status for Medical Powers of Attorney (Medical Proxies).
Nursing and Midwifery Council: pressing for tightening up of guidance on covert medication and an effective system of health and character checks for registered staff.
General Medical Council: representing patients’ views on regulation of the profession via our membership of their Patient Reference Group.
We also sit on various committees representing the patient perspective on healthcare to the medical profession and to activists on behalf of the elderly.
WE HAVE BEEN INVOLVED WITH
GMC (General Medical Council): commenting on draft guidelines covering:
- Withholding and withdrawing life-prolonging treatment
- Medical research: the role and responsibilities of doctors
- Reform of the GMC’s constitution and governance
- Reform of the fitness to practice procedures
- Revalidation of doctors’ competence
- Consent – the ethical considerations.
Department of Health: giving advice and consulting on:
- National review of commissioning special services
- Removal, retention and use of human organs: code of practice for post mortems
- Modernising regulation in the health professions
- NHS Plan: the good practice in consent initiative
- A code of practice for the diagnosis of brain stem death
- NHS Plan: patient and public involvement in the NHS
General Dental Council: Learning from complaints
Retained Organs Commission: Unclaimed and unidentifiable organs and tissue, a possible regulatory framework
NICE (National Institute for Clinical Excellence):
- Guidance on new interventional procedures
- Routine pre-operative testing
- Clinical guidelines: pressure ulcer prevention
- Clinical guidelines: multiple sclerosis
BMA (British Medical Association):
- Cardiopulmonary resuscitation
- Healthcare funding review
Royal College of Surgeons: Good surgical practice 2002
Royal College of Physicians: Good medical practice for physicians
Information Commissioner: Data protection act
Patient Concern has handled hundreds of calls from the media since its launch in October 1999. Both co-directors and some of our special advisors are frequently quoted in the general and medical press, have been interviewd on radio, including the BBC’s Radio 4 ‘Today’ programme, and appeared on various televison programmes and channels.
Our speakers are much in demand at major conferences held by commercial organisations, by large Trusts and Royal Colleges. Recent subjects include ‘Patient access to records’, ‘Communicating risk to patients’, ‘The Human Rights Act,’ ‘Informed consent’ and ‘The patients’ perspective on medical ethics’.