26 December 1997

The Rt Hon Frank Dobson, MP,
Secretary of State for Health,
Department of Health,
Richmond House,
79, Whitehall,
London,
SW1A 2NS.

Dear Secretary of State,

I am writing on behalf of the Campaign for Health Service Democracy to comment on the White Paper, The new NHS.

While we accept that most of the proposals in the White Paper are likely to improve the responsiveness and managerial efficiency of the Health Service, the document is still disappointing. In a statement intended to be the Government’s strategy for improving public health, the gaps are illustrated by two words which are not used anywhere in the White Paper: democracy and international.

The White Paper refers repeatedly to consulting patients and communities. While this is an essential ingredient in democracy, it is not sufficient. Consultative processes leave the initiative with health professionals and managers habituated to the culture and blind spots of the NHS organisation. Questions to which professionals and managers have not thought of answers are difficult to ask, and it is even more difficult for the community to promote research aimed at finding answers to those difficult questions.

A democratic Health Service is needed for at least the following reasons:

as an aspect of the general principle of communities governing themselves;

to secure communities’ acceptance and ownership of short-term priorities and longer-term strategies for health care, including difficult decisions;

to co-ordinate interdependent public services which may (but for democratic intervention) be managed from a narrow professional perspective;

to ensure that Health Service employees are accountable to their communities not only for their actions but also for their refusing to act.

The long chain of accountability from Health Trusts via appointed Health Authorities and Ministers to Parliament is incapable of delivering any of the fruits of democracy. Executive organisations and individuals with authority to make decisions affecting citizens need to be directly accountable to an elected body on which everybody has a representative.

The White Paper casts the Department of Health in a role which seems still to be in the culture of the 1940s, when central command and control won a war and quickly restored public services to pre-war levels. The draw-backs of this approach, which are apparent in places in the White Paper are:

the Department specifies the detail of local organisation, which may be appropriate in some or most areas, but is better left as far as practical to local decision within a general framework;

lack of evident cross-departmental co-ordination of policies which may have implications for public health (These will be much easier to co-ordinate at local level if the democratic framework gives sufficient flexibility);

insufficient recognition of the scope for international co-operation in medical research and in limiting the spread of disease.

These draw-backs are not apparent throughout the White Paper and in some other documents from the Department of Health, such as Health Action Zone: Invitation to Bid and the press release on EU public health priorities during the UK Presidency of the EU. It would appear that, while many of the policy advisers in the Department of Health do have the necessary breadth of vision, there are still people comfortable only when working within a departmental hierarchy and remit who have influenced the content of the White Paper.

The Campaign for Health Service Democracy is a network of people seeking a democratically accountable Health Service. I attach a note of the Objects of the Campaign, which were prepared some months before the White Paper was published.

My own experiences show the need for cultural change in the Health Service which only democracy can bring.

My mother, who in 1963 started the campaign which ended legal discrimination against women, particularly in the distribution of property following divorce, has been a victim of medical discrimination against people (mainly women) suffering from mental infirmity in old age. For many years I struggled with a consultant in Rugby to get her simple surgery for a prolapsed womb liable to infections, and got the reply:

"I don’t operate on people like that."

If the consultant had been accountable to a democratic body on which I had had a representative, he would not have used those words. I am confident the sentiment underlying them would also have been unacceptable.

After my mother moved to a residential home in Coventry, in 1994 I persuaded a consultant at Walsgrave Hospital to operate, but only after he amplified the risks of operating and insisted on relatives watching her all day in the ward and between the ward and the operating theatre. Despite temporary bruising from falling off the trolley in the operating theatre or on her way back to the ward, the operation was a success.

My mother was active until she broke a hip in July, 1997. She was kept waiting in pain for "garden screw" surgery, because there was inadequate surgical cover for emergencies on a July weekend and other patients were given priority. The day after the operation she was walking under the supervision of a physiotherapist. Unfortunately the screw failed after she was discharged from hospital, and it was some time before anyone realised that a remedial operation was necessary. Then the Coventry consultant kept her in hospital for more than six weeks for assessments, although he made it clear at the outset, while standing with his back to me, that he did not intend to operate further. Later he changed his explanation for not operating, as I heard second hand. Fortunately the Trauma Unit has an energetic General Manager (whom I got to know after speaking on local radio about the delays in July), and she, apart from sorting out several administrative problems, arranged for a second opinion from a consultant in Birmingham. While he was careful to explain the risks of operating, my mother was in and out of the Birmingham hospital, with a half-hip replacement, in less than a fortnight. However the delay in treatment means that, although she is out of pain, she has lost the ability or the inclination to walk.

I had a bad and potentially fatal experience with the Health Service in 1990. Twice my general practitioner referred me to a surgeon for breast lumps. On neither occasion did he use x-rays or ultrasound. On the first occasion he said the lumps were cysts and removed the liquid. On the second occasion he ridiculed me in front of students and said he did not want to see me again. Three years later I was called for the first of the routine three-yearly mammograms for women between 50 and 65. Reflecting on the ridicule I attracted on the previous occasion, I missed the appointment, but I went for a mammogram when I received a reminder. Two operations in April 1993 showed that cancer had spread out of the breast, and treatments including chemotherapy and radiotherapy kept me off work for eleven months.

I recognise the need for national (or international) standards, especially for access to health services, and would not wish to see a return to the double standards that surrounded my mother’s maternity care when I was born in 1942. As the Coventry hospitals were reserved for casualties of war, maternity services were transferred to Leamington. While Leamington mothers had near-normal service, Coventry women were put into a makeshift maternity hospital and, although they were unfit for duty in the aircraft factories, told to scrub the floors. Arrangements need to be put in place to ensure that, while the health services provided locally reflect local priorities, people satisfying nation-wide tests of need are entitled to treatment wherever it may be available.

Notes on particular paragraphs within the White Paper are attached.

I will try to send an electronic copy of this letter and attachments to the Department’s Internet site. I am also writing in similar terms to the Prime Minister.

Yours sincerely,

Sheila Porter-Williams

Chapter 1. We would agree with the sentiments and nearly all the content.

1.2. Public health is affected, not only by the services mentioned, but also by those aiming at community safety, encouraging and facilitating healthy activities, and eliminating health risks from food and from the environment. Elected representatives from the community are essential to break through or get round institutional and departmental barriers. The Government needs to acknowledge its international role in promoting public health.

1.7. Opportunities should be taken to link health centres and surgeries with access to other public services. This is already starting to happen.

1.13. It is clearly right to guarantee prompt consultations for cancer. But the accountability of consultants needs to be changed. They seem to be accountable to nobody for the consequences of rejecting potential patients.

1.22. We do not fully agree with the statement that "decisions about how best to use resources for patient care are best made by those who treat patients". It is clearly true for procedures, equipment and drugs. Nobody would seriously argue that professionals should be able to design financial incentives for themselves. In between these extremes are the difficult decisions on priorities within inadequate resources, which at the extreme includes deciding which preventable deaths will not be prevented. While professionals have an important contribution to make in balancing risks against benefits, they need to be accountable for their decisions, and the community needs to be able to assert its values, such as that every individual is worthy of life-extending or pain-relieving or life-enhancing treatment. The national standards proposed at the end of the paragraph are a recognition of the problem, but need to be monitored and enforced by a locally accountable authority.

Chapter 2. We support the general approach to simplifying management, but feel that the detail should be a matter for local decision, once elected Health Authorities have been set up within boundaries determined by an independent Boundaries Commission and with direct lines of accountability from all the provider bodies in their areas.

2.4. The sixth principle, "to rebuild public confidence in the NHS as a public service, accountable to patients, open to the public and shaped by their views", would be expected to lead into the processes of democratic accountability, which do not appear in the White Paper.

2.11. Partnership with the local authority and other local interests is no substitute for democratic accountability. See my comments on 4.21.

2.21. In view of my mother’s experience over her hip replacement, I am glad the unacceptable variation in service has been highlighted.

2.22-23. Ending secrecy is an essential ingredient of democracy, but insufficient.

2.24. In our model each local area would have a single democratic body responsible for health services in its area. This body would take direct responsibility for strategy and commissioning, and would hold other bodies and individuals accountable for service provision. This would include monitoring:

of the levels of disease in their areas;

of the effectiveness of treatment in their areas;

of the causes of any high incidence of failure in treatment, such as led to numerous deaths in heart valve surgery at St Cross Hospital in Rugby;

of the extent to which people referred by general practitioners are not accepted as patients.

In this model NHS Trusts would be executive bodies not needing "representative boards", though the elected Health Authority might well appoint a committee to monitor each Trust or appoint its own representatives to serve on Trust Boards.

Chapter 3. This chapter seems to attempt to preserve the structures of bureaucratic command and control without adequate justification. We do not accept the need for any regional structures except to provide rare specialties which cannot be resourced locally, and for liaison with other regional bodies. Both these functions should be accountable to joint committees of Health Authorities. National standards are needed, as is national monitoring, whether through a new Commission for Health Improvement or by expanding the role of the existing Audit Commission.

3.17. The statement that "links with social services will be strengthened" plays down the interdependency of public services at local level and the important role of elected representatives to get them to work together.

Chapter 4. We agree that Health Authorities need a stronger, clearer strategic role, but would go further in giving them complete responsibility for executive bodies in their areas.

4.4-8. I am surprised that Health Authorities do not already have the statutory duty to improve the health of their population, and that Local Authorities do not already have a duty to promote the economic, social and environmental well being of their areas. If there are gaps in their powers and duties, they must be filled quickly.

4.9. The scope of the Health Improvement Programme should not be constrained to pre-determined partner organisations. Potentially every individual and every organisation within an area can contribute for good or ill to public health. Statutory bodies should all be given any necessary powers and duties to facilitate joint working.

4.13. Co-operation between Health Authorities and local social services and other partners should go beyond planning care for patients. One of the issues that came up in discussions around the removal of acute paediatric services from St Cross Hospital in Rugby was the lack of arrangements for care of healthy school-children in their own homes to enable parents, especially single parents, to stay with a seriously ill child at a remote hospital. As I am sure children are frequently sent to distant hospitals for specialist treatment, this must be a national problem. If it had been common practice for Health Authority members to include members of the Local Authority’s Social Services Committee, it would not have needed a public meeting about the partial closure of a hospital to identify the problem.

4.20. The strong public voice in health and healthcare decision-making needs to be not just reactive to proposals for investment and closures but also able to initiate change and to investigate service failure and wrong-doing. Community Health Councils are not fully equipped for these roles as they are not directly accountable to their residents and not able to pursue individual complaints.

4.21. The role envisaged for Local Authority Chief Executives under-plays the potential contribution of elected representatives. A democratically elected Health Authority will almost inevitably include members of every other local democratic body who will be able to facilitate joint working and creative solutions to problems using the combined resources of public services. There is a role for officers of Local Authorities on executive bodies supporting Health Authorities, but it is for the Local Authority to decide who these should be. Not every Local Authority has a Chief Executive. They are all required to designate a Head of Paid Service, but the statutory duties of that post are limited to issues of organisation and staffing. Another officer might be more appropriate for service strategy and co-ordination.

Chapter 5. Primary Care Groups may make a useful contribution to service planning and delivery at local level, but they should not be organised from the centre. Democratically elected Health Authorities should be able to try this or other approaches, and exchange information on their strengths and weaknesses.

5.9. Primary Care Groups will be able to contribute experience of patients to the development of the Health Improvement Programme. As professionals without a democratic mandate they will have no standing to interpret the perspective of the local community. We welcome the recognition of poor liaison with Local Authorities on child health or rehabilitation.

Chapter 6. We see the future role of NHS Trusts as executive agents of democratically elected Health Authorities, and their main line of accountability as being to those Authorities.

6.12. We accept the need for accountability to professional bodies for service quality, supporting the Health Authority’s monitoring role.

6.22. Partnerships need to go beyond social services. Contributions to the recovery of an individual patient may come also from changed housing or environmental conditions, from employers or from social security benefits, and other services such as probation may contribute in some instances.

6.30. We are aware of great reluctance of NHS staff to express grievances or to give evidence at disciplinary hearings against consultants. Some patients (or their relatives) are also unwilling to put their names to reports of poor treatment for fear of repercussions. When I complained about lack of toilet cleaning at St George’s Hospital at Hyde Park, in 1980 during industrial action against its closure, I was moved to a private room as a "trouble-maker" to stop me talking to other patients.

Chapter 7. We see the national level as undertaking those functions which it would be wrong or impractical to leave to local discretion, and promoting international co-operation wherever this would be beneficial. We are uneasy about bodies such as the NHS Executive performing executive functions (as distinct from monitoring and exchanging information and good practice) without a democratic mandate. Any regional bodies that may be necessary should be accountable to the democratically elected local Health Authorities.

7.3. The Government needs to address policy issues on health without regard to departmental boundaries. Adequate liaison is needed to ensure that the health implications of policy on employment law, social security, education, community safety, housing, and preventing health hazards from food and from the environment, along with the current responsibilities of the Department of Health, are considered coherently and scrutinised together in Parliament.

7.6. Much of what is proposed in this paragraph would benefit from international co-ordination and sharing of information.

Chapter 8. We support the aims in this chapter.

8.5. The goal of Fair access should include after "irrespective of ..." mental condition. We are pleased to see the recognition of the benefits of hip replacements. The goal of Efficiency needs to include the contribution from partner agencies.

Chapter 9. Local democratic accountability should lead eventually to local discretion to raise revenues to improve health services.

9.8. There is danger in allowing any group of providers, including general practitioners, to control budgets including services provided by themselves and by others. They may be tempted to top-slice their own budgets, and leave the balance for the rest of local service provision.

9.16. We agree that individual arrangements are sometimes necessary to get round the prejudices of individual consultants.

Chapter 10. Health Action Zones are a good way of piloting further development of local partnerships.