The End of Patient, Public Engagement/Involvement!

In a dramatic new development members of the pan London HIV Consortium's PPE sub group this week received a notification, from the lead commissioner, that there will be no further meetings. SHE will consider how she will involve patients in future. At the same time the chairman of the PPE sub-group distributed notice of his resignation.

Meanwhile patient reps on existing sub groups, such as the drugs and treatments sub-group and the audit and outcomes sub-group will continue to attend those groups.

There is, indeed, a great deal wrong with the way PPE works. Vested interests and pressure groups have increasingly tried to use the mechanism as a means of forcing their own wishes to the fore and they have spent a considerable amount of effort attempting to silence the legitimate voices of patients. That is very easy to deal with. Conflicts of interest must be declared and those with considerable conflicts of interests should be excluded altogether. It is inappropriate for Companies who seek to obtain funding from the NHS to be represented on this group. If they are represented then that must be purely in an advisory role. Unfortunately they attend, don't declare their interests and proceed to use undue pressure to influence debate. Some of them have used the most unprincipled methods to attack legitimate reps and this has extended to lengthy deliberate campaigns of vilification.

Feedback London will continue to participate where possible and its representatives are actively engaged in some of the sub-groups and working groups that are continuing. We also intend to maintain communication with the commissioner.

Buried in the notice is a reference to the fact that the commissioning function will be carried out by NHS England. While we understood this was likely to be the case we are unaware there has been any specific announcement. Meanwhile there are significant areas of concern to patients that have to be raised, such as problems with home delivery, breaches of confidentiality, GP issues etc.

28th July 2011

and now for the usual... an expensive "consultation" from a contractor.

rather than enter into a proper discussion with service users and while pleading poverty as an excuse not to convene the ppe sub group... The commissioners have decided to lavish money on an external "review" of "patient participation.

We have been down this road before. We know how it will end. This is Croydon PCT up to its usual tricks. Yes. By an act of lunacy this failed PCT which fails to deliver an HIV service in its own area and which has corrupted the SLHP has been handed responsibility for the pan-London service.

How afraid of the truth can they be? Do they honestly believe their lives can be made easier by continually "covering up"?

Frankly we would advise anyone, at this stage, against wasting their time on ppe. It is a fraud. The machinations of those who pull the strings are such as to cause very real harm to those who dare participate. Their paid servants, who masquerade as patient reps within clinics, are people better avoided.

New Prescribing Rules
Click logo to see the letter being provided to patients. >>>

QUIFFS and QUINNS

A deal of time is being spent on formulating quality indicators by means of which London clinics will be tested. How worthwhile they are is questionable. Feedback London has been well represented on discussions with the lead commissioner but we are increasingly concerned at the effect these indicators will have. Indeed they look remarkably like targets... which the present Government is committed to removing from the NHS. The only way many of them can be assessed is by means of expensive surveys. Money seems, yet again, to be being thrown away on fruitless statistical exercises.

Recently we have been hearing of concerns within the medical profession on the nature of these indicators. For example, one test is setting targets for the number of patients who have agreed to the recording of details of their GP or perhaps their information being passed to their GP. Many people, especially from certain ethnic origins, find this unacceptable. Therefore it is not within the "gift" of the clinics to deliver on this. To be fair we understand the commissioner has listened to concerns expressed on this and the questions are likely to be re-formulated to a more reasonable target.

We suggest that before embarking on surveys, focus groups and all the expensive paraphanalia attached to external consultants' information "collecting" exercises the commissioners might well look at the following easily measured characteristics of clincs. These indicators will give a pretty reliable indication of how well a clinic is performing and the information is easily obtained without spending a fortune:

1. The ratio of waiting space to consulting space
2. Are there separate male and female waiting areas?
3. Is privacy of conversations at reception safeguarded (waiting areas out of earshot, private booths etc.)
4. Staff turnover rate (by profession)
5. Staff absenteeism rate (by profession)
6. Consultant to patient ratio
7. Nurse to patient ratio
8. How recently the clinic was redecorated (standard: within 3 years)
9. Gender balance of staff. Is it appropriate? Can patients always choose the gender of the health care professional they see?
10. Availability of appointments. How long ahead do patients have to book appointments?
11. Walk in. Are patients able to access a walk-in clinic?

Some points of information suggested for collection by survey can equally easily be collected by semi-automated systems... such as waiting times. The hardware and software together will cost a fraction of the cost of a survey.

Send us your ideas:

Feedback South London has become
Feedback London

At a recent meeting of the pan London HIV PPE sub group we were given news of a new regime applying to the prescribing of HAART drugs in London.

While we expressed our concern (in no uncertain terms) at being given the details as a "fait accomplis" we were, nevertheless, able to obtain a number of concessions from the commissioners and Feedback South London led the process of creating an informative leaflet about the issue to be distributed by the clinics to their patients. That is only now about to be distributed.

We deplore the campaign being waged, in ignorance, by NAT on this issue.

If they had wished their views to be heard they were entitled to attend the PPE sub group, as we do. (They never do.) They would not need to be carrying on a pointless, time-wasting futile activity now. Their campaign can only cause increases in the administrative costs of the commissioners and the clinics at a time when their budgets and time are under considerable pressure.

We have assurances, recorded in the minutes of the PPE sub group:

• that no-one will be forced to change their medication

• all drugs, currently in use, will continue to be available

• the most expensive drugs will be available where necessary.

• certain penalties rumoured to have been in the offing will not be applied to the clinics where they are unable to achieve targets.

The last of these was in the form of a very profound promise made publicly.

We promised as soon as we had clearance a copy of the information hand-out would be available on this site. See above for a link to it.

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