Information advice and advocacy for patients

The needs of disadvantaged patients in a more market based system.

Monday 6th March 2006 10am to 4pm Friends House Euston Road London NW1 2BJ

Main speakers:

Dr Jo Ellins, Picker Institute Jo’s presentation

Ruth Thorlby, Health Policy Researcher, King’s Fund. Ruth’s presentation

Sharon Holder GMB

Mark Duman Chair, Patient Information Forum:

Neal Lawson, Chair of Compass

Notes of proceedings – kindly taken by Lilias Gilles

Martin Rathfelder opened the meeting summarising some of the points made in previous seminars. Life expectancy is going up and, by the end of the day’s seminar, will have gone up by 1 1/2 hrs. This is mainly caused by engineering, clean water and sewage principally, and not from healthcare. There are huge differences in this, between urban and rural, between rich and poor and between those who are well-educated and those less so. Yet rich people complain more about their health and their disabilities. They usually get better care. There are great differences in the provision of healthcare between prosperous and deprived areas. There are fewer preventive health consultations in poor areas and more GPs in wealthy areas. It is not surprising that GPs as small business owners choose, if they can, to practise in a prosperous area where conditions are pleasanter and their businesses will increase more in value.

Patricia Hewitt once said every health authority should have a duty to reduce inequity in health. Are the reforms she is leading bringing that about? Current changes are all about choice but choice is more about where you go for an operation. There is no choice for chronic conditions, maternity, mental health care, geriatric care.

Informed consent is a prime condition of medical treatment. Is present choice well-informed? There are huge information asymmetries and not all have the capacity or desire to choose. In many areas choice will be limited by reality, geography and the availability of services..

Patricia Hewitt has said recently “the middle classes have always had choice. We want to extend that to the rest of you”. Previous speakers have emphasised the need for good information and this is not just a few leaflets. People need to talk through the options. Advice, information and advocacy must be good.

In discussion speakers felt that hospitals will continue to dominate the health service. Politicians are very sensitive to the loud voices around hospital closure. There are not many votes in mental health or elderly care. The loss of CHCs and the very minimal support given to, and publicity generated by, PPIs was regretted.

Sharon Holder, Senior Policy Officer for GMB, said her union represented a variety of NHS staff, ambulance, domestic, car park attendants and NHS managers and had been involved in many campaigns for public services. It was in favour of choice and thought the White Paper was on the whole good but with some reservations. The GMB was particularly concerned about the creation of foundation trusts which would be autonomous. Technically they would be part of the NHS but would be independent of it and would not be accountable through the ballot box. They would not be bound by national agreements on pay and training, except for doctors. Foundation trusts will employ 1.6 million staff who are worried.

The private sector is being introduced to primary health care. GPs are reluctant to practice in poor areas and the same might become true of community nursing under the proposals. PFI is costing a great deal of money and yet deals are still being sought.

GMB members are often in a position where patients talk more freely to them and they hear more than would be said to doctors or nurses. Patients often do not have the confidence to ask questions of doctors. Sharon knows how much difference it makes when she accompanies her mother and father to the doctor. She feels the goodwill of staff will go if they are no longer employed in the NHS. The GMB is not against voluntary sector providers but against big business which is only interested in making money for their shareholders.

Jo Ellins of the Picker Institute described some of the results the Institute had found in surveys of patients around choice. Patients want choice but mostly they want a good local service. They want choice on kinds of treatment and they want to have the information to exercise that choice but that is not on offer.

Health literacy is what is needed and that is not in the White Paper. It seems to be of greater importance in health policy in US and Canada. It is estimated that half of the population of USA has low health literacy. This is defined as the capacity to access, understand and act of health information. Those without it need help in understanding.

Patients want choice about things like car parking, food, visiting times. These are not the most important matters for their treatment. They may choose a hospital for treatment for, say, diabetes and then find there are a number of other clinics they may need which are not available there. Information about which doctors make more successful diagnoses and treatments would be useful but is not available. Informed choice is only going to be available to some.

What is required? Good health literature. Patient information of good usability. Support and advice framework such as patient care advisors. Self-help groups are good but it is important that GPs know about them and recommend them. Health education should be in the school curriculum and should be available in adult education. It has to be a programme which engages people and particularly those who are most disadvantaged. Newspapers and magazines should be encouraged to give credible and accurate information. Cleaners should be educated so that they can give good information. But we do not want doctors and nurses to be absolved of responsibility to communicate adequately with their patients.

Sharon Holder commented in discussion that communication skills should be rewarded and perhaps doctors and nurses would bother more. She also reminded the meeting that many domestic staff were migrant workers.

Ruth Thorlby of Kings Fund Institute described the results of a study she had done with HIV/AIDS patients for whom choice of hospital had always been available. In general choice is a good thing. The government is introducing choice as a means of levering up quality but will it make for better equity. The main inequity is low intervention eg the percent of CABG in the lower socio-economic classes is much less than in the highest.

The movement of patients away through choice is supposed to be a signal to providers to improve. Did it work in HIV/AIDS services? Ruth spoke to 5 staff and 5 patients on 5 units. These were qualitative interviews: eg why did the patient move? with what information? and what was the effect on providers? It was a minority who moved, mostly white gay men, in search of anonymity but also quality of care. Sometimes they moved to a hospital at considerable distance. For information they used the internet and written information but mostly word of mouth though peer groups and support groups both of which were trusted most.

There was no data kept by trusts on patient moves but senior staff did take note, certainly at first. They worked on improving waiting rooms, polite staff, extra services so that the HIV/AIDS areas looked much better than the ordinary sexual health clinic often adjacent. There did not seem to be much effect on clinical quality.

HIV is probably a special case, for resources and autonomy of units as well as in patient choice. The research was carried out in the late 90s when survival had increased due to antivirals. By 2000 the rates of diagnosis were increasing dramatically.

The units concerned were two big units where patients came from all over the country, two small units with predominantly African and local patients and one with a patient group which would probably be similar to most general hospitals. There seemed no difference in quality and statistics on mortality and length of illness were not different. Complementary therapies were widely available. Confidentiality was not an issue.

Can more choice mean more equity? The current policies will have little impact on the big inequities. There is a need for good information but will it be used by the most disadvantaged. Word of mouth is most important and peer groups are good. Advocacy is expensive. Ruth fears there will be skewed investment in peripherals. HIV units were freer to make decisions than other units. It is difficult to generalise from such small numbers in a qualitative study. More research is needed to show the effect of current changes.