Walsall October 1999

Synopsis

Good evening.

I have come here to talk about the need to make the medical profession democratically accountable. This view was reinforced by my own experiences. My difficulty in getting necessary treatment for my mother against open prejudice made me decide I should campaign to this end.

My colleague Anne Burge followed up her own experience of being unable to achieve change as a Community Health Council member with research into Community Health Councils generally. She will also talk about whistle-blowing.

The campaigning I have done has been shaped by my involvement in the Women’s Movement, so I will talk briefly about that.

When I was born, my mother worked at an aircraft factory building bombers for the Second World War. She was also Secretary of Coventry Labour Party, until she was expelled for having the wrong friends under the rule about a "party within the party". My father left us, and in 1963 my mother divorced him. We lived in a Council house, and, as the tenancy was in my father’s name, my mother had to argue with Coventry’s Housing Department for several months before she got the tenancy transferred to her. The Court said all the movable property belonged to the ex-husband, so the mother and four daughters were left without carpets or beds.

My mother decided to campaign to change the law and formed the Committee for Civil Rights of Mothers and Children of Broken Homes. The Government was unhelpful. Richard Crossman MP said there were no votes in women’s rights and told us we would only be taken seriously if we were organised. My mother told us we would do just that, and demonstrate that a Government that ignored women’s rights could not rely on women’s votes. My mother’s political friends disappeared, accusing her of being separatist.

We were all in low paid jobs or living on benefits. We could not afford to fight an election campaign. But we found that, when public opinion shifted under our influence, the political parties changed their policies following the lead of public opinion.

We took every opportunity to sell leaflets (and later the magazine Women’s Voice) in the streets and to write to newspapers reacting to stories that illustrated the need for change. Before long there were independent women’s groups all over the country and abroad pressing for change. Lord Gardiner asked my mother’s advice on what to include in legislation, and the Matrimonial Homes Act 1967 was the result. We in Coventry became the Women’s Total Freedom Movement. Radical women’s groups prospered and there was further legislation. Then came the International Women’s Conference at Oxford in 1970. Around that time women’s groups of all sorts took off, including Gingerbread and the Virago Press. With the change in Government in 1970, the pace of legislation slowed down. But the changes in the law in the 1960s have been quite robust. Public attitudes have changed, and now ideas that 35 years ago were seen as radical are commonplace.

How the Health Service failed my mother in her old age has exposed an area of unfinished business after the reforms of the 1960s.

My mother first showed signs about twenty years ago of a mental infirmity that was later diagnosed as Alzheimer’s disease. She became very dependent. When she needed minor surgery to stop recurrent infections, the consultant gynaecologist in Rugby told me,

I had no obvious way to seek redress, and let the incident pass. When I moved my mother to a small residential home in Coventry specialising in Alzheimer’s disease, I arranged to see a Coventry gynaecologist. After some persuasion he agreed to operate on my mother, on the understanding that I was aware she might not survive the anaesthetic and that the family would have to attend her in hospital as the nurses could not cope with a patient who was so dependent. We took her into the operating theatre ante-room and transferred her on to the theatre trolley, while the hospital staff stood aside ignoring her. The operation was a success, although she was bruised from falling off the trolley in the operating theatre. She was discharged back to the residential home within 24 hours.

This farce in the operating theatre is not unique. Anne mentions other example(s) in her book.

Later my mother broke her hip and was admitted to hospital in Coventry. On a hot July Saturday she was prepared for surgery, without food or liquids. On a visit to the ward in the evening, I found that the operation had been postponed because the theatre was over-worked, but my mother, who weighed only six stones, had been left without sustenance and lying in pain on the broken hip. I thought she had been quietly left there to die. I insisted on speaking to a surgeon, and spoke to a Registrar over the telephone. He would not assure me that the operation would be carried out the next day. I retorted that, barring an air crash over Coventry, I expected my mother’s operation to be the following morning, which was a Sunday. The operation, a "garden screw" joining together two crumbling pieces of bone, was performed early next morning. The following Friday BBC Midlands Today reported another elderly patient waiting three days in Coventry Hospital for hip surgery. I wrote to the reporter, and spoke the following week on local radio. One thing I said was that I suspected the hospital had a policy of euthanasia. This prediction has echoes in more recent revelations at other hospitals.

The "garden screw" repair to the hip came apart quickly, and eventually my mother was readmitted to hospital for tests. The Consultant gave a grudging bedside interview, standing with his back to us. He asserted wrongly that my mother could not feel pain, and said he would not operate on a patient who was incapable of co-operating with treatment. Still he kept my mother immobile in hospital for six weeks. Eventually a Birmingham surgeon agreed to operate, provided that I accepted the risk that my mother might die under anaesthetic. The operation was a partial success. My mother was out of pain, but could not walk without assistance. She survived another ten months. I am convinced she would have lived longer if the hip replacement had not been delayed.

When I drew attention to management failings, the management took appropriate action. But the consultant surgeon who intended to send my mother home with a permanently broken hip would not even look me in the eye.

The way my mother was neglected reminded me of my own treatment when I had breast cancer. In 1990 my General Practitioner sent me to see a consultant surgeon specialising in breast cancer to investigate breast lumps. He performed a simple test, said the lumps were cysts and not cancerous, and removed the liquid. The lumps grew and I was sent back again. The same consultant was contemptuous and said he did not want to see me again. Three years later I was called for the routine screening of women aged between 50 and 65. At first I thought I had been subjected to enough ridicule, and I missed the first appointment. The village surgery sent me a reminder, and on this occasion I decided not to be intimidated and I went for screening. When the scan was positive, I saw the same consultant. He told me there was a very small cancerous growth and arranged for me to be admitted to Rugby Hospital for surgery after my Easter holiday. The first operation did not remove enough cancerous tissue, and I was readmitted to hospital and had a second operation a fortnight later. The laboratory report showed that the cancer had already spread beyond my breast. Then I was fortunate to come under the care of a consultant cancer specialist who was positive and did inspire confidence. He took me through ten months of chemotherapy and radiotherapy and five years of hormone treatments, and I seem now to be fully recovered.

All these experiences show that consultants’ attitudes vary from arrogant prejudice to sympathetic competence. They have enormous power, not only to decide the most appropriate treatments but also to reject potential patients through prejudice and to treat patients, relatives and staff with contempt. They need to be accountable for their policies and for the manner in which they perform their duties. The policies should be capable of change through a democratic political process. And it should be possible to remove consultants for aggressive and intimidating behaviour, and not only for professional misdemeanours or failure to satisfy management targets.

Some policies should be national or international issues to be incorporated in the law. But many policies are matters of local administration and priorities, which should be set through a local democratic process. And investigation and putting right of complaints (except those about highly technical matters) must always be local and should include a democratic element to deal with issues that cannot be simply resolved by the responsible manager. These considerations led to the Campaign for Health Service Democracy.

Since launching the Campaign I have been watching the media for stories of abuses in the Health Service.

In Rugby the future of the local hospital has been a prominent local issue. Following some deaths after incompetent surgery, Warwickshire Health Authority put the hospital under the management of the Trust that runs Coventry Hospitals. The hospital was closed for maternity and all but the simplest surgery. In the 1997 General Election the Labour candidate won a supposedly safe Conservative seat by promising to save the hospital. The Rugby Advertiser is backing the campaign to save the hospital and runs stories, letters and leading articles on the Health Service nearly every week. There have been public meetings to discuss the hospital’s future, which is still uncertain.

The Government has attached great importance to reducing hospital waiting lists. Waiting lists are a strange performance measure, as they show neither the number of patients treated nor the effect on the life expectancy and health of the residents of the area served by the hospital. But they are a simple measure that a remote minister can use to make league tables of hospitals. But waiting lists exclude people who have not been accepted for treatment. I was not on a waiting list for a cancer investigation in 1990. Twice my mother was not on a waiting list because she was refused treatment. And these occasions were before waiting lists were formally targeted. When the Secretary of State told Trust Chief Executives and Chairmen to reduce waiting lists or be sacked, predictably stories emerged of more co-ordinated manipulation of the waiting lists.

Television reported on incompetent cervical smear analysis several years ago at Ashford Hospital. This was recognised by a scientist in the laboratory. The consultant did not want to know. The scientist convinced the General Manager, but the consultant said it was a clinical matter outside the General Manager’s area of influence. The scientist went to the press, and like most whistle-blowers, lost his job. It has since emerged that in many other hospitals, including Rugby, the cervical smear analysis was incompetent and the tests had to be redone.

Several newspapers reported a high mortality rate at Bristol Royal Infirmary from experimental surgery on babies. More recent reports say that many parents did not know what was happening, and allege that some of the signatures on consent forms are forgeries.

There have been many recent reports of doctors deliberately by their acts or omissions and without consulting the patients or their relatives accelerating patients’ deaths. Some Health Authorities have arbitrary age limits for resuscitation. In some areas, if you are over 70 you are not resuscitated if your heart stops. In other areas you are denied resuscitation if you are as young as 60 or if you suffer any form of disability.

The British Medical Association has issued guidance that the doctor should consult on whether to let a patient die - but should then have the final say. The Crown Prosecution Service is now reviewing some incidents, so it is possible that the Courts will rule that such conduct is unlawful. In the meantime, the only people who have been punished are nurses who disobeyed orders and kept alive a patient whom the doctor had decided to starve to death. The law is not certain, because of an instance of hard cases making bad law. One of the victims of the Hillsborough football stadium disaster was for many years kept alive in hospital but never recovered from a coma. He was fed intravenously. The Court ruled as a matter of law that there is a duty to provide food and water for a patient but no duty to provide medical treatment. It also ruled that intravenous feeding is medical treatment that can lawfully be withdrawn. The Court suggested safeguards and Court supervision for any occasions when there might be a case for exploiting this legal loophole. The medical profession has followed the precedent and ignored the safeguards. I suggest what is needed here is to accept the legal ruling that feeding can be medical treatment, and for Parliament to legislate that it is a criminal offence to withhold medical treatment if a competent person would reasonably expect the treatment to be of benefit. Where treatment is of doubtful benefit, such as in the original case of the patient in a prolonged coma, there needs to be a statutory review procedure, and treatment should continue until that procedure is complete.

Several women have died recently of breast cancer after being sent away contemptuously, like me, when the first signs appeared. The relatives’ usual response has been to claim financial compensation. What is needed is a fundamental change in the culture and accountability of the Health Service.

This book by Peter Bruggan, which is included on the reading list on my handout, is full of examples from the Health Service before the 1997 General Election where aggressive management was devoted to ends far removed from concern for public health or fast, convenient and effective treatment for patients. While the victims interviewed for the book were not patients but Health Service employees (or more usually former employees), their consistent message is that the Health Service of the mid 1990s was not working. The present Government has swept away the "internal market", but it has put no coherent system of government in its place.

The Government, apart from its perverse targeting of waiting lists, has produced two major policy documents on the Health Service:

White Paper - The New NHS; Modern, Dependable

Green Paper – Our Healthier Nation

I responded to both documents, and agree with most of the content. The New NHS is inward looking in places, reviewing what the Department of Health administers rather than the Government’s role in public health, but the Green Paper puts this right. Good points include establishing national entitlements to standard treatments like hip replacements. What is not in either document is any role for democratically elected local bodies to set policies and priorities and make professionals accountable. The same quangos are in place; only the ministers making the appointments have changed. I have had letters from Civil Servants in England and Wales and from the Health Secretary for Wales describing positively what the Government is doing, including its approach to getting community views, but these letters ignore my basic point about democratic accountability. I believe the Government will do nothing to introduce democratic accountability until there is overwhelming public pressure.

I have circulated copies of the Objects of the Campaign for Health Service Democracy. These were produced two years ago. The key points are that

every citizen should be directly represented by a democratically elected representative on all local bodies responsible for health services, and

democratically elected bodies should hold professionals accountable.

We are seeking a new democratic accountability:

not a return to the 1930s, when local authorities ran poor law hospitals, but the councillors and aldermen concentrated on buildings, finance and tenders, and left the quality of medical care entirely to the doctors;

not a return to the 1970s, when local authorities appointed a few councillors to sit on Health Authorities. In this process, individual citizens would not identify their own representatives. Several Community Health Council members have written to me as though the 1970s were a golden age to return to.

International and national levels of government should confine their attention to matters which cannot be controlled locally, such as:

statistics and research

rules of medical ethics

large scale environmental threats to health (Ozone layer, acid rain, mad cow disease, genetically modified food)

rare specialties, where a few centres may serve a whole country

health promotion through national or international media

minimum entitlements to health care, which local bodies would be under a duty to provide.

For local bodies to be fully accountable to their electors, they must not be able to blame anybody else for their failures. So they should have independent powers to raise taxes locally, even though they will continue to be mainly funded, as now, from national taxation. This said, the abuses that I have mentioned have little if anything to do with inadequate resources.

I started the Campaign after trying to get treatment for my mother. On the morning after her hip operation was postponed, I wrote to my MP. Before he replied, I spoke on local radio. My MP wrote that he was aware of several similar incidents, and had drawn the appropriate Minister’s attention to them. This reinforced to me how remote is the political accountability of the Health Service. My MP has limited influence. The Secretary of State in theory has power over the Health Service. But he represents a constituency in London, and he needs to please the Prime Minister who appointed him and will give him his next job, but he does not represent me as a Rugby resident.

I spoke to other patients and their relatives. Some of them were reluctant to speak to me, fearing reprisals from the hospital, which Anne’s book shows do take place. Others were only interested in financial compensation, which drains the NHS of funds, and not in improving accountability. I wrote letters to the local press and spoke at a public meeting called to discuss the future of Rugby Hospital. Other people referred to my letters. A contractor working at my home said his wife was a nurse and confirmed that consultants intimidated staff, but she was afraid to speak in public. This attitude among staff persists after retirement. One of my relatives asked not to be quoted, although she is retired and her husband is a councillor.

The next stage was to approach Community Health Council (CHC) members. They are appointed, not democratically elected, and their powers are limited, ultimately, to drawing their concerns to the Secretary of State’s attention. They also have their limitations in operation, which Anne Burge will describe as a former member. They should, however, be aware of the problems and may have some influence towards achieving change. CHCs include people who are politically active, working in an environment where they are less likely to be restrained by Group discipline. There are many thousands of CHC members, and I have only reached about a quarter of them. Most of the replies I have received are supportive, especially one from near Bristol from a clergyman who was familiar with the Royal Infirmary scandal but said he resigned from his CHC after three months in disgust at its inactivity. Some of the less supportive replies are illuminating. A woman from Oldham telephoned that her CHC officer was out of order for giving me her name and address. Several CHC officers said their members represented the community collectively, not individually, and their identities were confidential. A man from Northavon wrote that individual insurance was the way to provide health services.

Since then the Association of Community Health Councils in England and Wales has set up a review of the role, organisation and membership of CHCs. The North East Warwickshire CHC has responded positively, but not to the extent of recommending direct elections.

I appeared in the national press once with a letter in the Daily Mail responding to the story of the award of damages to the relatives of a woman who died after being sent away contemptuously without investigation when she had breast cancer. On compulsory euthanasia I put a contribution on the Democracy Network on the Internet.

As the United Kingdom Government’s position on democracy is clear and unhelpful, I took the opportunity of the election of the new National Assembly for Wales to write to all the Assembly Members suggesting they should make the Health Service in Wales democratically accountable at local level. Again, most of the replies I have received (from all political parties) are sympathetic, but unlikely to lead to early action. One letter from an Assembly Member, asking for names of Campaign members in her constituency, reminded me how much work I still have to do with CHC members.

In late September I e-mailed The Welsh Office to ask for a mailing list of CHCs, and received the list the same morning. I then wrote to the 21 chief officers. To date I have received nine membership lists and no other responses.

We have joined organisations with related interests and aims, and extended our network by sign-posting between our respective web-sites. Details of linked organisations, along with references to books and press stories, are on the back of the handout.

There is widespread concern about individual abuses in the Health Service. Many people, employees, patients and relatives, also find the authoritarian culture intimidating. But there is likely to be a long haul in achieving wide enough recognition that the solution lies in democracy. This is where you can help.

You can all help by spreading the message, and drawing attention to the democratic deficit whenever abuses are brought to light.

If there are any councillors here, the Council can help by passing a resolution supporting the Campaign’s broad aims.

Neighbourhood and local committees can also go on the record as supporting our campaign.

Any individual or organisation wishing to be sign-posted on our web-site should let us know, with a name and address. Telephone number, web-site and e-mail address are also useful, but not essential.

I will now hand over to Anne Burge.