Health consumer groups have grown in number and in stature over the past two decades. But little is known about how they represent patients and carers, or how they interact with each other, with policy-makers and opinion formers, in central government, Parliament and the media.
1Also, there is only anecdotal evidence about their impact on policy and service provision.
The growth of health consumer groups has occurred alongside initiatives to promote consumer participation in the NHS. For example, the patient partnership strategy, the expert patient's taskforce and membership of the reference groups associated with the national service frameworks have been an acknowledgement of the contribution which patient and carer groups can make. Patient and carer groups were also involved in the formulation of the NHS plan and are represented on the modernisation board.
We attempted to assess whether these groups were mainly concerned with providing services or with influencing policy. We decided to focus on a limited number of disease and condition areas and on cross-issue and umbrella organisations (which were based on alliances between clusters of health consumer groups sharing common goals). The five areas chosen were arthritis, cancer, heart disease, pregnancy and childbirth, and mental health.
We identified 186 groups and a structured questionnaire was sent out to all of them in late 1999.
We received replies from 123 groups.
The organisations surveyed varied considerably in size in terms of income and staffing - both of which affected the scale and range of activities. We asked respondents whether they had formed alliances with other groups: 86 per cent said they had.
Respondents were asked to rank in order of importance 14 different activities (table 1). Raising public awareness and providing information, advice and support for the public all ranked highly, with eight in 10 respondents ranking influencing government policy as important or very important. Influencing local policy was regarded as a lower priority.
We asked organisations whether their primary purpose was to provide services or influence policy.
Almost half (48 per cent) said their primary purpose was the provision of services, while 16 per cent opted for influencing policy. Just over one-fifth (26 per cent) said that their organisation had an equal commitment to both.
While over half of the arthritis, cancer and mental health groups prioritised service provision, only 50 per cent of the pregnancy and childbirth and 47 per cent of the heart disease groups did so. Eleven per cent of the cancer groups and 16 per cent of the mental health groups, but none of the arthritis groups, said they were primarily concerned with influencing policy.
The results showed a high level of contact between health consumer groups and government (table 2).
Three-quarters of respondents (75 per cent) said their organisation had contact with central government over policy issues within the past three years.However, almost half (42 per cent) of these groups said that they had initiated the contacts while just over one-fifth (21 per cent) said they had responded to requests. Nevertheless, 61 per cent of the groups felt that opportunities for participation had increased compared to only 9 per cent who thought opportunities had decreased.
Those most frequently contacted were Department of Health civil servants, with almost half the groups having at least quarterly contact.
Almost half the groups reported at least quarterly contact with MPs and peers, with less than a third reporting that they had never contacted them.A substantial proportion (30 per cent) of groups reported contact with the prime minister's office, with 7 per cent reporting at least quarterly contact.
Groups in disease or condition areas were more involved in the policy process than others. Most cancer groups (79 per cent) said they had had contact with policy-makers in central government over the past three years compared to just over half (56 per cent) of the arthritis groups. The group's perception of how opportunities for participation had changed during the past three years matched government policy priorities. While the cancer (71 per cent), mental health (67 per cent) and heart disease (61 per cent) groups thought that opportunities had increased over the past three years, only 46 per cent of the pregnancy and childbirth groups and 33 per cent of the arthritis groups did so. Half of the heart disease and mental health groups claimed to have at least quarterly contact with DoH civil servants, while the cancer groups (38 per cent), the arthritis groups (31 per cent) and the pregnancy and childbirth groups (27 per cent) had decreasing degrees of contact.
Our analysis suggested a key role for umbrella organisations. Almost half of these groups saw their primary purpose as attempting to influence policy while less than a third said that their aim was to provide services. Furthermore, all the umbrella organisations had had contact with government over the past three years.
The NHS plan proposes that groups representing patients and carers should become increasingly engaged in the formation and implementation of policy.However, our findings to date indicate that there are both strengths and weaknesses in present arrangements.
In their interaction with government, almost all respondents saw their expertise as their main strength in contributing to the policy process and almost all felt that they could speak for their members and those who contacted them.Most also thought that the growing alliances between groups was a source of strength.
The lack of staff and limited financial resources were seen as important barriers to participation. Around three-quarters of those surveyed also commented on the lack of opportunity for consultation. Some groups also mentioned that a lack of continuity in funding was a problem.
View finder: group representation In order to identify whose views the health consumer groups represented, respondents were asked about their membership. We were particularly interested in whether there was an affiliated organisational, as well as individual, membership and who these members and/or organisations were.
Almost all the groups surveyed (91 per cent) had some form of membership. Eightytwo per cent had individual members (including, in most cases, patients, carers and relatives) while 39 per cent had affiliated organisations in their membership. In addition, 68 per cent of groups said their membership included healthcare professionals, while one-third of the groups had professional associations as affiliated members.
We also asked respondents whether they included patients and/or carers on their decision-making body. Almost two-thirds of the groups (65 per cent) did so, while one-third also included carers. Doctors were represented on the decision-making body of almost half of the groups although they did not always have voting rights.