by     JOHN KAPP

Open letter to: Rt Hon Kevin Barron MP, Chairman, Health committee
7, Millbank, London SW1P 3JA

John Kapp 22, Saxon Rd, Hove BN3 4LE, East Sussex Tel: 01273 417997
1st May 2007

Dear Mr Barron


Thank you for your report, which I have read with interest. I agree with your main conclusion – that Patient and Public Involvement (PPI) is a ‘nebulous and ill-defined concept’, I also agree with your main recommendation –that the Government should define PPI so that it ‘is about changing outcomes about the NHS and social care providers putting patients and public at the heart of what they do.’

The first question that the committee rightly asked was, ‘What is the purpose of PPI?’ I am disappointed that there was wide disparity in the 170 submissions, and that the report does not attempt to answer that question directly. Unless and until you and the Government are clear about PPI’s purpose, how can we volunteers on the ground be expected to fulfill it?

1   Regulation of the NHS
On reflection, I believe that the purpose of PPI should be the regulation of the NHS. PPI Forums should be the eyes and ears of NHS regulating bodies, such as the Healthcare Commission (HC) and the National Institute for Clinical Excellence (NICE) However, I have never even heard mention of a ‘regulator of the NHS’ unlike the well known other monopoly regulators, such as Oftel, Ofwat, Ofsted etc.

Regulation of the NHS is more difficult than the other service industries because its 1.3million staff are scattered throughout the community. That is why an army of regulators is needed who are also scattered throughout the community, namely the thousands of PPI (LINks) volunteers

The NHS is the last bastion of the old 1940s nationalised monopolies, which used to run all public services, such as telephone, gas, water, electricity, rail. They all used to be provider-led. For example before privatisation of the GPO you could have any telephone, so long as it was black, dumb-bell handset, finger turning dial and you waited 2 months.

All those industries are now consumer-led, and properly regulated, thanks to the introduction of competition which increases consumer choice. The public supports the Government’s wish for the NHS to become patient-led. PPI (LINks) is the way to realise that objective as described below.

2   PPI (LINks) remit
I said in my evidence to you (quoted as number 130 in volume II on page Ev 330) ‘LINks remit should be to create a patient-led NHS by recruiting patients to sit with speaking and voting rights on every committee concerned with patient care.’ Their function should be as a regulatory watchdog, and they should sit on both executive committees and advisory committees (see paragraphs 4 and 5 below).

3   Integration of NHS and the Alternative Health Service
Privatisation of telecommunications some 25 years ago aided the communication revolution which created mobile phones, e mails, internet etc.. During that time there has been a similar revolution going on in healthcare, called the Alternative Health Service, which is patient-led. It practices Complementary and Alternative Medicine (CAM) which is based on the new paradigm of holism (body, mind and spirit by which we create our own reality) and which is endorsed by science. (1) It is the fastest growing industry throughout the western world, and its practitioners probably already outnumber the NHS staff. The problem is that patients have to pay for it, so it is accessed only by those who are rich enough to self-refer and pay, which excludes the vast majority.

NHS providers have so far been allowed to maintain their conventional, orthodox medicine in a separate ‘ivory tower’, funded by the taxpayer. It is based on the old paradigm of materialism (matter is the only reality) reductionism (everything can be reduced to the sum of its parts) and mechanism (people are machines) , which has now been scientifically discredited. (2) They dismiss CAM by saying that there is no evidence that it works, but they use a biassed definition. Evidence to the patient is simply whether it works for him. If it works, he does not care why. ‘Placebo’ is as good a reason as any.

Prince Charles rightly campaigns for the integration of the best of CAM into the NHS, (3) which was the subject of his speech to health ministers at the World Health Organisation in May 2006. However, integration meets with fierce resistance from the old guard of consultant doctors whose belief system and status is threatened. Patient representatives on NHS committee can gently persuade doctors to overcome their fear of the Victorian notion taught at medical school (that CAM is ‘quack remedies practiced by charlatans’) and embrace the holistic paradigm. Integration is a natural marriage between the left brained, male conventional medicine and the right brained, female CAM. It is better for society if they get married and live harmoniously together, rather than next door like neighbours from hell.

The market evidence base for CAM is strong enough for polls to show that 3 out of every 4 patients want it to be provided on the NHS. In a patient-led NHS there can be no argument against integration, as the customer is always right, even when he’s wrong.

4   Executive committees
There is some scope for patients to become non-executive directors on executive committees. However, opportunities are rare, and they are likely to be ‘captured’ by the committee, and lose their regulatory function as a watchdog, because they do not have the backing of being a member of a PPIF (LINk) At least one PPIF (LINks) member should be separately appointed on every executive committee, including GP practices.

5   Advisory committees.
In my health authority (Brighton and Hove) there are more than 20 advisory committees, but they have no power to influence decisions before they are made.. They are really just focus groups that have been allowed to stand, and be consulted and ignored at will. ‘Consultation’ means being told what is going to happen before the general public is told. The existence of these committees gives the impression of patient involvement but they are really just tokenism, because they leave the NHS free to continue its provider-led business as usual.

6   Financial reforms
(money following the patient’, ‘end of the block contract’ Payment By Results, GPs holding the budget for patients, Practice Based Commissioning) are welcome reforms, but they do not seem to have made any impact yet locally. My attempts to get alternative health centres contracted to the Primary Care Trust (PCT) as Alternative Providers of Medical Services (APMS) so that GPs could commission and pay for complementary therapy on the NHS have so far come to nothing.

Although everyone agrees that hospital care should be for acute cases only, at my local hospital trust (Brighton and Sussex University hospitals) bedblocking is still a serious problem about which I have been in correspondence. Patients who die in hospital are not even counted as bedblockers. Instead of working on a patient by patient basis, every condition (eg an emergency admission for bronchitis, costing £1752 under the tariff) still seems to be averaged, like the old block contract. If the admission exceeds the ‘trim point’ of 17 days, a daily charge of £171 is payable by the PCT. This seems to conceal a hidden subsidy of up to 17X£171=£2,900-£1752 or £1,148 per patient who bedblocks.

I have suggested that the patient’s GP practice should be billed for every day (as they would be if they were referred to the Nuffield) If so the GP would have an incentive to make cheaper alternative arrangements available (such as home care support, intermediate beds ) Nobody in authority even seems to want to discuss this with my forum, presumably because they are too busy trying to cope with complying with the system as it is to worry about how it should be reformed.

7 Obstacles to a patient-centred NHS
Patients cannot become effective watchdogs helping to create a patient-centred NHS unless they recognise the powerful forces which maintain a provider-centred NHS. The main obstacles are the paternal attitude of many doctors, maintained by a blind, child-like faith in them by many patients. This attitude is well illustrated by a letter from a doctor, printed in the British Medical Journal: ‘I will get down off my pedestal when my patients get up off their knees.’

Putting this issue in other words, the NHS remains provider centred with token PPI because of
a) Paternalistic, closed-minded doctors playing God, who see patients as children in need, so cannot listen to them telling them how to improve. They won’t be told because they are on an ego trip.
b) Patients who are too much in awe of doctors, worshipping them. As PPI representatives they are apologists for the NHS saying ‘although this was awful, it wasn’t the Doctor’s fault.’ Deep down they may feel that if they criticise doctors, treatment would be withheld when they need it.

This attitude originates naturally in everyone’s infancy from one’s helplessness as a baby. One has a blind trust in the power of one’s parents over one’s life or death. It may develop later into a superiority complex in someone who becomes a paternalistic doctor, or an inferiority complex in someone who becomes a patient in awe of doctors.

A good PPI watchdog sees both the above attitudes as simply immature. From maturity he can see objectively, outside the box. Whether labelled ‘doctor’ or ‘patient’ we can really be neither Gods nor worshippers but simply people helping each other on life’s journey from birth to death. Mature PPI watchdogs can make constructive criticism on how things can be improved, and PPIFs (LINks) should support them in that aim.

8 Conclusion and recommendation
I hope that you will persuade the Government to put in place a proper regulatory framework for the NHS for which PPIFs (LINks) patient representatives will be the watchdogs on every NHS committee concerned with patient care.

With best wishes,
yours sincerely

John Kapp (PPIF Brighton and Hove Council PCT)

1 See website Scientific and Medical Network ‘’, film ‘What the bleep do we know’
2 See website
3 See website of Foundation for Integrated Health ‘’

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