Paper for NALM and LINks members                 by John Kapp                 26.6.09

22, Saxon Rd, Hove BN3 4LE, East Sussex   Tel: 01273 417997

1 Summary of conclusions
a)   Health and Social Care services (hereafter called ‘the Services’) are still provider-centred (the last two dinosaurs, which escaped extinction in the Thatcher years)
b)   Despite decades of rhetoric for user-centred Services, user involvement has hitherto only been tokenism, for the following reasons:
c)   The regulatory bodies supporting user involvement (the gamekeepers) – namely the Community Health Councils (CHCs), the Centre for Patient and Public Involvement (CPPIH), the 400 Patient and Public Involvement Forums (PPIFs) and the 152 Local Involvement Networks (LINks) - have been captured by the providers of the Services (the poachers).
d)   The regulatory bodies (gamekeepers) are not at ‘arms length’ from providers (poachers) but have conflicts of financial interest embedded into their constitutions.
e)   Regulatory capture of user representatives (gamekeepers) by providers (poachers), is rife at every level.
f)   Clinician paternalism (doctor on a pedestal) means that clinicians pathologically cannot hear what patients (users) are saying, still less do what they are told by patients, which is the point of user involvement..
g)   Clinicians tend to believe in conventional medicine only, and dismiss alternative therapy as quackery practiced by charlatans. This gives patients Hobson’s choice of treatment, which is usually drugs which do not cure them, but give them side effects and adverse reactions which have become the biggest killer (1).
h)   It is time to give the NHS back to the patients who fund it through their taxes by making it user-centred

2   Recommendations.
The mission for every LINk member and the National Association of LINks Members (NALM) should be:
to bring about a change from a provider-centred to a user-centred health and social care Services, through effective user involvement and regulation. To implement this mission NALM should lobby for the following policies to be included as manifesto pledges by the main political parties. This would be popular with the public, as it would remove the objectionable ‘dinosaur’ paternalistic, provider-centred nature of the NHS. :
a)   Introduce effective regulation of the Services, by following the former ‘privatisation’ route of 1984-96, but without selling off the assets.
b)   Create a new regulatory body, perhaps called the Regulatory Office for User Centred Health and Social Care (say OFHEL) on the lines of OFTEL, OFGAS, OFWAT, OFELEC, etc. who would pay the staff of the hosts and Health Overview Scrutiny Committees (HOSC) instead of the councils.
c)   Break the present provider monopoly by introducing competition and choice of treatment. Three out of four patients want Complementary and Alternative Medicine (CAM) provided free on the NHS. This can be done by integrating CAM into the NHS, as the Prince of Wales’ Foundation for Integrated Health advocates (2). The Department of Health’s recent innovation initiative could incubate this. Social enterprise companies could be set up as Alternative Providers of Medical Services (APMS) consisting of CAM therapists who would provide CAM on the NHS by service level agreement contracts with the PCT commissioners. The details of this are described in a paper by me (3).
d)   Introduce fit for purpose constitutional structures for all LINks, on the lines of the model draft constitution (4) This would enable LINks and hosts to act effectively as a regulator by monitoring the Services and blowing the whistle when necessary avoiding the pitfalls of regulatory capture described in paragraph 5.

3   The forces for and against user-centred Services
These are ranged against each other like the proverbial irresistible force and the immovable object:

a)   For user-centred Services are the users themselves, numbering virtually all the UK population, over 50 million people. However they are not properly organised to achieve this goal, despite it being the purpose of user involvement, formerly known as Patient and Public Involvement (PPI). The public are supported in this aim by the government, whose rhetoric for 4 decades is that they want user-centred Services, ensured by effective regulation by means of user involvement. However, the government has failed to deliver this because ministers have been captured by the providers of the Services, via their trade unions, as described in paragraph 5b).

b)   Against user-centred Services are the staff, namely the employees of the providers of the Services, now numbering some 2 million. (1.3 million in the NHS) They steadfastly defend the tradition that the Services have always been provider-centred, never been user-centred, and they don’t want them to become user-centred. They have the power to mount massive resistance to the creation of effective regulation, by means of regulatory capture, as described in paragraph 5.

3   History of user involvement support.
The need for user involvement to achieve user-centred regulation through patient representation was recognised by Sir Keith Joseph (Conservative) in the early 1970s. Harold Wilson’s government (Labour) created the Community Health Councils (CHCs) which operated from about 1975 to 2005. They were replaced by the Centre for Public and Patient Involvement (CPPIH) which officiated over some 400 Patient and Public Involvement Forums (PPIFs) from 2005 to their abolition in April 2008. 152 Local Involvement Networks (LINks) then took over from the PPIFs, corresponding to the 152 Primary Care Trusts, who had meantime been reduced from over 400, through amalgamations. The central organising body, CPPIH, was not replaced. The secretariat administering the LINks is provided by so called ‘hosts’ paid for by the Local Authorities (councils) on 3 year contracts.
None of these bodies were properly constituted to support user-centred regulation of the Services. The cavalier abolition of the CHCs, CPPIH/PPIFs, and the creation of 152 LINks without any constitution whatsoever (carte blanche) looks as if ministers were deliberately negligent to ensure the continuation of provider-centred Services to please the trade unions of the providers, such as Unison.

4   What is regulation?
Government control of a monopoly service (like the Services) to ensure that they act in the interests of the customers (users of the service, such as patients) rather than the interests of the providers of the service (the employees) The only way of getting effective regulation is by separating to ‘arms length’ the functions of the regulator (colloquially called the gamekeeper) and the functions of the providers of the service (colloquially called the poachers).
Patients use the Services to be treated for their illnesses. Effective regulation of the Services in the eyes of patients means the regulation of the treatments that are offered by clinicians, particularly doctors. Treatments should be safe, effective in curing the patients’ illnesses, and without side effects and adverse reactions. Unfortunately, few conventional treatments even offer prospect of a cure, and usually have side effects. Horror stories about iatrogenic (doctor induced) illness appear frequently in the media, and this has overtaken cancer and heart disease to become the single biggest killer in the USA with 800,000 deaths pa. (1) CAM has no side effects or adverse reactions, and has never killed anyone. (5)
Doctors tend to see themselves as on a pedestal, telling patients below them what is best for them. User representation and involvement means reversing these roles. The patient representatives are on the pedestal, telling doctors what they should do. This flies in the face of the normal doctor/patient relationship so is resented by doctors. (However, patients often like this, as it lets them off the hook of being responsible for themselves.)
Doctors’ image of patients is that they are unfirm, vulnerable, in need of treatment, mentally disturbed if not deranged, so what they say should not be taken seriously. Doctors are therefore unlikely to even hear what patients say, because their image makes then pathologically deaf to them. Still less are they likely to do what they are told, as user involvement implies that they will.
Doctors’ training conditions them to be absolutely prescriptive - there is only one sort of treatment – conventional - and any alternative treatment is quackery, practiced by charlatans. The patients therefore have Hobson’s choice of treatment - conventional or conventional.
Doctors’ conditioning means that they don’t even understand what is meant by ‘user-centred services’. They live in an ivory tower world of their own (clinic, hospital etc) disconnected from the external environment of the market place, where, as customers, they expect to be treated as always right.

5   Regulatory capture as the obstacle to achieving user-centred Services
Regulatory capture is when the gamekeeper (the person supposed to be regulating (such as the staff of the regulatory authority, host, user representative) gets ‘captured by the poacher (the provider) to form a cosy relationship to ‘not make waves’, ‘scratch each others backs’ and ‘feather each other’s nests’. It is human nature to want a quiet life, so one has to be very strong minded to resist being captured.
The result if regulatory capture is token regulation, called tokenism for short. Under tokenism the regulator goes through the motions of monitoring the provision of the service, but never actually blows the whistle. Nothing significant is changed, and the service provider carries on more or less exactly as before, particularly the perpetuation of provider-centred Services In my experience as a user representative for the last 9 years, regulatory capture is rife at every level in the NHS, as described below.

a)   Regulatory capture of regulatory bodies by drug companies
Infiltration of drug company plants in regulatory bodies led to many deaths and much harm to patients taking unsafe drugs which got licences but shouldn’t, such as Thalidomide, Vioxx, Seroxat (7) The regulator was the Medicines and Healthcare Products Regulatory Agency (MHRA) in the UK and the Food and Drug Administration (FDA) in USA. The commercial pressures for this are enormous.

b)   Regulatory capture of ministers of health by the trade unions
There may be a built in conflict of interest resulting in the regulatory capture of Labour ministers of health by the provider of Services. The minister represents both the interests of the users of the Services, which needs an effective regulator (gamekeeper), and also the interests of the members of the trade union sponsoring him as MPs, who may be employees of the provider of the Services, ( poachers). As the minister’s job and livelihood depends on the trade union, the poacher always wins, and the gamekeeper (patients) loses. This explains the inadequacies of the constitutional structures of the user-involvement bodies (CHCs, CPPIH/PPIFs, and LINks ) which were all created by Labour governments.

c)   Regulatory capture of managers by clinicians
Managers are supposed to determine what happens in organisations, at every level up to chief executive officer. They do in the corporate world but not in the NHS. Managers (even chief executives) in the NHS do not manage in the usual sense of determining the outcome. Management consultant, Gerry Robinson, tried to ‘fix the NHS’ in two TV series (6) He failed in this task because he found that it was clinicians (not managers) who determined what happens in the NHS. Clinicians naturally strive to perpetuate their ivory tower of provider-centred Services. They are experts at capturing their managers, and anybody else who tries to change the system to user-centred Services, as was well illustrated in the TV programmes.

d)   Regulatory capture of the hosts by the Local Authority
The CPPIH was an independent regulatory body who used to pay the secretariat servicing some 400 PPIFs, However CPPIH was abolished in April 2008, and was not replaced. The secretariat of the LINks, (called hosts) now get their funding through the Local Authorities (councils) This builds a financial conflict of interest into their payment structure. The councils pay the salaries of the staff of Social Care Services, who are providers (poachers) They also pay the hosts, who are supposed to be gamekeepers.
My host managers (for Brighton and Hove) are employees of the CVSF (another council funded body), and therefore colleagues of the council officers who monitor and pay them. It is natural for public sector workers to identify with each other and work together with solidarity in incestuous relationships. Although the NHS staff are not paid by the council, they are just ‘down the road’, and may well be in the same trade unions (such as Unison) Their natural tendency is therefore to not make waves for each other. Host staff therefore cannot be expected to blow the whistle on Services staff, (poachers) nullifying their effectiveness as regulators (gamekeepers).

e)   Regulatory capture of the PPIF secretariat by the Services
From 2000 to 2006 I was on the Sussex Cancer Patients Forum, which was founded by the Sussex Cancer Network, part of the NHS. The Network (provider – poacher) paid a facilitator, who chaired the Forum meetings, set the agenda, and determined all action. She naturally looked to her paymasters (poacher) rather than to her patient representatives (gamekeeper) for direction. The Forum was therefore just a public relations exercise to promote the provider, and we were just token representatives because the secretariat thwarted our every effort to reform the Network. We lobbied for years for a user chairman, and eventually got one in 2005. I saw the Network trying hard to capture her, but I don’t know whether they succeeded, as I left in 2006.

f)   Attempted regulatory capture of me by the PPIF secretariat
From April 2006-8 I was on the PPIF for the Brighton and Hove PCT. The secretary had worked for the CHC for many years, and was used to directing the committee. She would not take any direction from me. She went over the top one day, and I blew the whistle to CPPIH, after which she resigned. Another secretary was appointed who was just the same. Both secretaries had dominated their CHC/PPIF for so long that they could not imagine any other way of working than bossing their user representatives around as if we were children. (However, some user representatives actually wanted to be treated like this, and became teacher’s pet. )
The secretary rigged the elections so that their yes men (always women) got elected. The women had a chip on their shoulder against men, about whom they were always complaining, and who could never do anything right. Any man (such as me) on the committee was hen pecked, so usually did not stay long. I relished the learning experience, so stayed despite constant harassment. The meetings became a battleground between the women co-chairmen and me. They were so emotionally involved that they could not hear what I said (pathological deafness) Whenever I suggested doing something constructive they automatically rejected it.

g)   Regulatory capture of user representatives by their doctors
In my experience many patient representatives (including the above mentioned women) have been captured by their doctors. They see their doctor (unconsciously) not as a supplier of a service, but as a benevolent or malevolent parent, or even a god on a pedestal whom they worship on their knees. Although they are always complaining, they veto anyone else’s attempt to change anything. Sub-consciously they may fear that if they rock the boat or blow the whistle, treatment will be withdrawn to them or the husband etc for whom they care. They become closet apologists for the Services, compromising their ability to be gamekeepers.

h)   Regulatory capture of some LINk steering group members by the council
I was on the Interim Steering Group of my Link from June-Nov 2008, and tried to influence its constitution (Terms of Reference) by writing one (4) The staff of the host (who work for the CVSF, which is a council-funded body) would not discuss it, let it be discussed by other members, nor listen to what I had to say.
They held an election for 15 members of the Steering Group in Nov 09. The election procedure was not open or transparent, and some say that it was rigged by the host. They put no restrictions on who could stand for election. Several people stood and got in who are paid by the Services, hence had financial conflicts of interest on the side of the poachers. Under Nolan rules they should declare a financial interest and leave the room, which makes it pointless for them to be on the steering group. I stood, but was not elected. I have raised this matter with the host and with the monitoring officer of the council, bur have had no reply or acknowledgement, and nothing has been done about it to my knowledge.

i)   Regulatory capture of the Health Overview and Scrutiny Committee (HOSC). by the council
I used to be a councillor, so I know some of the councillors on the Brighton and Hove HOSC. The officer administering the HOSC used to attend the PPIF meetings, so I got to know him. For the last 3 years, through him and through the chairman I have been trying to engage the HOSC in issues that I have been campaigning on, such as bedblocking in the local hospital. I wrote a paper on this (8) and sent it to the HOSC hoping that the they would support my efforts. I got no reply. When I pressed the matter, the officer said that he had consulted with the chairman who had decided not to pursue the matter. He gave no reason for this decision. When I pressed for the reason the officer clammed up, and would make no comment.
I believe that the reason is regulatory capture. The HOSC officer is a council officer, and a colleague of the officers who employ social workers. He risks losing his job if he assists me in blowing the whistle on his colleagues, as in paragraph d) above. The HOSC is therefore fatally flawed constitutionally as a gamekeeper by the financial conflict of interest embedded into its secretarial administration.

6   History of the nationalised industries
About a dozen industries were nationalised in the 1940s by the Labour government, including coal, iron and steel, post office, water, gas, electricity, railways, roads, health, social care. They became run for the benefit of the employees rather than the customers. Being financed by the taxpayer encouraged empire building, gave the staff meal tickets for life and a licence to print money. The cost-effectiveness of the service provided was neither monitored nor regulated. The results were as follows:
a)   The industry became more and more provider-centred, loss making, strike ridden and wasteful of taxpayers money.
b)   The customer got an ever-poorer service without redress (eg from the Post Office you could have any telephone you wanted provided that it was a huge black dumbbell and you waited for months or years for it)
c)   The taxpayer had to foot a huge and mounting bill.
d)   The employees had low job satisfaction, so came out on strike, resulting in the ‘winter of discontent’ 1978-9 when public services were awful and the slogan ‘Labour isn’t working’ was coined.
e)   The country became the ‘sick man of Europe’.

7   The privatisation programme of 1984-96
Mrs Thatcher saw these nationalised industries as dinosaurs bleeding the taxpayers to death. She therefore ‘privatised’ as many of them as she could, namely coal, iron and steel, telephones, water, gas, electricity. John Major privatised the railways. (They had to leave the two most difficult ones - health, and social services, which escaped extinction so are still roaming). These so called ‘privatisations’ had the following three objectives:

a)   Selling off the assets as shares, to raise money for the government.
This was colloquially criticised as ‘selling the family silver’, but the sales were popular.

b)   Regulation.
To regulate the industries so that they acted in the interest of their customers, rather than the providers. (the industry’s employees) This objective was achieved by splitting off the regulatory function of government (colloquially called ‘gamekeepers’) from the provider function (called the ‘poachers’) at ‘arms length’.
Regulatory bodies, (gamekeepers)’) were set up and given statutory powers over the providers, (‘poachers’). They were called Regulatory ‘Offices’ of Telecommunications etc abbreviated to ‘OFTEL OFGAS, OFELEC, OFWAT’ with the job of monitoring the telecoms, gas, electricity and water supply utilities respectively. These bodies were given statutory powers to act in the interests of the consumers to stop the companies from say, charging unreasonably.
For example, the price of crude oil tripled in July 2008, and domestic gas, electricity and pump prices accordingly rose by about 30%. The crude price reverted to normal after about a month, but the providers did not drop the tariff prices until the regulators forced them down at least 6 months later.

c)   Introduction of competition.
This was to break the provider’s monopoly and give customers choice of provider, This objective was achieved by encouraging new alternative providers to enter the market, Although the phone, gas and electricity industries are still monopolies in the sense of there is only one wire or pipe to each house, consumers now have a choice of many providers who competes for custom with different tariffs, driving prices down and quality of service up.

8   How can effective regulation of the Services be achieved?
The two remaining dinosaurs – the Services - can be effectively regulated by copying parts 7b) and c) above of the privatisation programme, but without selling the assets off to the public. (part 7a)

a)   New Office for User Centred Health and Social Care (perhaps called OFHEL)
Although there are 35 regulatory bodies monitoring various functions of the Services, none has the objective of making the Services user-centred. A new independent regulatory body (no. 36) should be created to do this, which would be the natural successor to CPPIH. It would be responsible to pay for the administration of the hosts (as CPPIH did for the PPIFs) and for the HOSCs. This would remove the financial conflict of interest of gamekeepers being paid by the same administration that pays the poachers (the council), resulting in regulatory capture. (see 5d and 5i).
However, unlike CPPIH, it should be specifically constituted with the object of creating user centred Services. It should make clear that the staff of the host and HOSC are a service on tap to the user representatives, who should be on top. This is the same relationship as a cabby to a taxi fare. The fare directs where they are both going, and the cabby gets them there without question. It is also the same relationship as between a council officer and a councillor. and a civil servant to an MP or minister. This ‘on tap, not on top’ relationship should be written into the host’s contract, and the contracts of employment of the staff of the host and HOSC officer.




Taxi Fare

Host officer

User representative

Council officer


Civil servant

MP / Minister

b)   Introduction of competition of treatments into the NHS
The public pay for the NHS through their taxes. He who pays the piper calls the tune – except in the NHS. Polls show that 3 out of 4 patients want complementary and alternative medicine (CAM) free on the NHS. A user-centred NHS has to comply with this wish, whatever clinicians may think or want. (see paragraph 4) At the end of the day clinicians are public servants, (not gods on pedestals) and should do what the public want, as represented by the government. Doctors have got away with murder (literally) hitherto, (1) and it is now time to give the NHS back to the patients.
The new NHS constitution gives patients the right to free treatment that is approved by the National Institute for Clinical Excellence (NICE) provided that the patient’s GP agrees that it would be appropriate. Some alternative treatments are NICE approved, such as the Mindfulness Based Cognitive Therapy (MBCT) course, as an alternative to anti depressant medication, on which I have written a paper (9).
The Department of Health has a new initiative – innovation - launched at Expo Innovation 18-19.6.09,. This could support the introduction of competition of treatments in the NHS by Alternative Providers of Medical Services (APMS) They could provide complementary and alternative medicine (CAM) commissioned by the PCTs. This initiative is described in a paper by me (3)
The integration of CAM will revolutionise the NHS, and get it out of crisis which is killing patients and doctors who have above average addictions and a decade less expectation of life. CAM treatments have the evidence of having survived in the market and the advantage that they do not have side effects or adverse reactions, so are safe. They are cheaper than conventional treatments, so save taxpayers money, which will be needed when the forecast cuts in the Services budget start in 2010/11.

9   Author
Kapp C.Eng, FIEE, MIMechE used to be a consulting engineer economist writing feasibility studies on electricity supply projects for international lending agencies. He was a shop stewart in the Electrical Trade Union. He was secretary of the Bow Group energy committee from 1983-99 and wrote papers on the privatisation of electricity. He was a conservative councillor on Brighton and Hove council from 1995-9. Since 2000 he has been a patient representative in the NHS. He would be pleased to receive comments, and can be contacted at 22 Saxon Rd Hove BN3 4LE 01273 417997 .

References (The section numbers eg 9.37, refer to )
1   ‘Death by Medicine’ by Dr Gary Null,
2   Foundation for Integrated Health
3   Paper ‘Integration of CAM into the NHS via Social Enterprise Companies’ by John Kapp section 9.37
4   Paper ‘Draft Constitution of a LINk’ by John Kapp 9.25
5   Paper ‘Commission Complementary Therapies’ 9.20
6   TV Panorama Gerry Robinson fixes the NHS, Dec 06 and ‘one year on’ Dec 07
7   Book ‘Food is better medicine than drugs’ by Jerome
8   Paper ‘Reducing the numbers dying in hospital (bedblocking)’ by John Kapp 9.24
9   Paper ‘Improving Health by Ending the Prozac Nation’ by John Kapp 9.28

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