This September 2010 PatientView Quarterly looks at the views of 887 UK patient groups, their important role within the NHS, their relationship with other healthcare stakeholders (including government and industry), and their views of the future of the NHS.
The issue contains:
? Detailed mapping of the size and shape of the patient movement in the UK, noting how the movement is rapidly expanding.
? A detailed appraisal of the activities of patient groups at local level (specialising in 10 different disease areas, and in older people and carers).
? Profiling of the activities of 287 UK patient groups.
? Descriptions of the relationships between patient groups and health professionals.
? Descriptions of the relationships between patient groups and pharma.
? Examples of successful campaigns undertaken by groups.
? Levels of government consultation with patient groups, and the mechanisms by which this is undertaken.
? Health campaigners' views of proposed government reforms to the NHS.
? Health campaigners' views of what they would like to see happen to their NHS.
? Health campaigners' views about the National Institute of Health and Clinical Excellence
(NICE), the health technology assessment authority, and the reforms to it that these groups would like to see.
Key findings in the Quarterly
The vast majority of the survey's respondent groups are more negative than positive about the NHS's future chances under the Coalition. Community-based patient groups are concerned about:
- Damage done by budget cutting across the NHS. The majority of the survey's respondents commenting on the Coalition's reform plans anticipate that the new government will embark on a round of NHS budget cutting in line with the current ethos of national fiscal austerity. Remarkably, respondents foresee that the NHS staff hit hardest, though, will not be managers, but front-line workers. A local stroke group from north-east England, for instance, believes that the Coalition will “cut the service budget, resulting in reductions in staff-patient ratios, and the demoralisation of staff. Conservative administrations have always cut the numbers of frontline staff, while expecting the staff to deliver more for less. From personal experience, it is an equation that does not work, and a recipe for disaster.”
- ‘Disability bashing'. HIV/AIDS groups are particularly apprehensive about the government's plans. They suspect that the AIDS Support Grant, which subsidises the living costs of people with HIV/AIDS, will be withdrawn.
- A decline in nationwide standards in the NHS. A number of groups anticipate cuts in centrally-run monitoring services, thereby diminishing the extent to which comparisons of the quality and the delivery of NHS healthcare can be carried out across the country. A group in southern England representing the needs of local patients with neurological conditions argues that the Coalition's reform proposals carry the hidden agenda of cutting the cost of quality monitoring, which would henceforth be run by a “few doctors with the time to ‘improve' things.”
- A lack of government consultation with community health organisations. A regional mental health organisation considers that the government might “say the right things about bottom-up approaches—great rhetoric—but effectively do what the Labour government did previously: safeguard top jobs, and provide a raw deal for the most vulnerable in our society—people from black and minority ethnic (BME) communities, and people with a disability (including mental ill health).”
The need for greater patient-public consultation
The groups responding to the survey do not see why they—and patients themselves—should not have a greater say in what happens to the NHS, given that more than one in five of the survey's respondent groups actively supply core practical or physical healthcare services to NHS patients (including the provision of nurses, doctors, and even hospitals). Membership of, and public support for, patient groups across the country is rising rapidly. Plus, patient groups responding to the survey emphasise that their campaigns at national and community level have had a significant influence on policymaking over the last ten years (and they quote examples).
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Introduction from the Editor
Why this survey of 887 UK patient groups?
Section 1: What patients think the government will do to the NHS
Section 2: The changes that patients say they would like to see in the NHS
Why governments cannot afford to ignore patients and the groups that represent them
Interviews with six UK patient groups
Patient-centred care in India: Interview with Chris Ward
What patients think of the NHS?
The perspective of patients / patient groups in 10 disease areas
The perspective of carers / parents and older people
Appendix II: Mapping of 207 survey respondents
Profile of their activities
Survey finds community-based patient groups fearful about the future of the NHS and worried about a lack of government consultation with patients
The UK government is failing to engage patients (or their representatives) in healthcare policy-making, whether at national or local level
A May-June 2010 survey of 887 patient groups (70% of which are community based) found that only 26% of the respondent organisations believe the Conservative party, when it in was opposition, rated them as important to talk to. And, despite talk of Big Society, none of the groups surveyed appear to have been formally approached for consultation by the new government. Alastair Kent, Director of the Genetic Alliance UK, tells the survey:
“I don't know that any organisation has had a formal invitation to participate in the Coalition's consultations on NHS reform (other than the open request to everyone in the various consultation documents).”
Community-based health groups are fearful about plans to reform the NHS
The vast majority of the survey's respondent groups are more negative than positive about the NHS's future chances under the Coalition.
Community-based patient groups are concerned about:
- Damage done by budget cutting across the NHS.
- ‘Disability bashing'.
- A decline in nationwide standards in the NHS.
- A lack of government consultation with community health organisations.
- Advanced Therapeutics
- Air Products
- Bristol-Myers Squibb
- BUPA Home Healthcare
- Crawford Pharma
- Eli Lilly
- Ferring Pharmaceutical
- Ipsen Pharmaceuticals
- Johnson & Johnson
- Juvela n Kapitex
- Merck Serono
- Novo Nordisk
- Rowlands Chemists
- Sanofi Aventis
- Sanofi Pasteur
- Sanofi Pasteur MSD
- UCB Pharma