Hospital Blamed for HIV Stigma

posted: 30/06/2010

The recent publicity and invitation to over 500 patients cared for by a healthcare worker with HIV to have a HIV test at York Hospital has been described as “disgraceful” by one of the city’s leading academics.
 

Professor David Maughan Brown, deputy vice-chancellor of York St John University, accused NHS bosses of not caring “who they terrify” or “how severely they stigmatise people living with HIV”.
 

In a letter to The Press, York’s local paper, Prof Maughan Brown questioned the thinking behind the hospital asking 519 patients to undergo HIV tests “because they have come into contact with a hospital worker who is HIV positive”.
 

Gross over-reaction and HIV stigma
He suggested there had been “a staggeringly inappropriate over-reaction by people so fearful of the risk of litigation, however incredibly remote, that they don’t care who they terrify or how severely they stigmatise people living with HIV”. He claimed the alternative was that senior medical personnel in the UK were so ignorant about the transmission of the HIV virus that they believed it could be passed on by casual contact. “Of the two disgraceful alternatives, one can but hope it is the former,” he said.
 

Risk ‘very low’
His comments come after the paper revealed last week how 101 former hospital patients in York had received letters asking them to attend HIV testing, after being treated by a member of clinical staff who was found to have HIV. Patients were offered support, counselling and the opportunity to undergo testing, but experts said the risk of cross-infection was very low.
 

A spokesman for NHS North Yorkshire and York said it would be “inappropriate” to comment on Prof Maughan Brown’s letter, due to an injunction preventing the publication of any information which could lead to the identification of the staff member. However, the trust repeated an earlier statement that only those who had received a letter asking them to undergo testing needed to contact their hospital.
 

Not one HIV infection from any HIV+ healthcare worker
Thousands of people have been scared across the NHS over the years, but no-one has ever been found with HIV from a NHS healthcare worker. George House Trust believes this was another pointless scare, stigmatising people and HIV. Much of the advice in the cautious NHS guidelines (now 5 years old) seems to have been ignored.

York Hospital's bad record with HIV

Two years ago York Hospital lost 19 people’s HIV medical notes in the street

NHS Guidance: HIV Infected Health Care Workers: Guidance on Management and Patient Notification [July 2005]
 

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Policing Expert Patients

posted: 15/04/2010

The Expert Patients Programme (EPP) is to help people manage their own long term conditions better. A special version of the course is occasionally run by and for people living with HIV at BPNW in NW England.
 

There's an online version of the Department of Health Expert Patients Programme for the general public. Some of the people who joined that course decided to become course tutors and trainers for the EPP.

How well do those non-professional health staff – the online EPP tutors – engage, guide and attempt to manage people with long-term conditions to be ‘good’ self-health managers?

This study by Manchester University gives an insight into the good cop / bad cop roles some online EPP tutors take on. Some tutors attempt to ‘police’ people learning how to health self-management, and other tutors try to boost people’s mental state and skills. 

Moral tones and judgements

The moral tone that tutors sometimes use shows their ignorance of theories and methods used by adult educationalists (where the educator is to enable and support the pupil to learn for themselves, not tell them off), as well as the strong need they felt to stand up for the EPP. Being strong advocates meant they defended the course, even when it at times caused obvious upset, such as during the session on Living Wills.
 

Policing gave tutors permission to comment on participants' behaviour in ways which were not motivating or enabling, but which adopted a moral tone about expectations of normal good behaviour.
'I'm sure you are fully aware that comfort eating does exactly the opposite to what we would like to happen' (class 67)

There's a lot that is good about EPP, but online tutors can undermine some of the benefits by moralising and criticising behaviour that is judged to be less than perfectly healthy.

Full article free  BMC Health Services Research 2009, Volume 9, Issue 93

Removing Your Electronic Medical Record

posted: 26/05/2009

NHS patients can now delete the electronic summary of their treatment from the new national medical database.

The decision represents a significant concession in data protection policy following talks between health service officials and the Information Commissioners' Office (ICO).

Until recently the Department of Health resisted pressure from sceptical patients and doctors critical of the security risks generated by confidential records being transmitted across the NHS broadband computer network known as the Spine.

Many people with HIV have significant concerns that news of their HIV status could become widespread or that the data could be made public, lost or misused.

Department of Health changes of mind

Only last month, officials described the cost of deleting individual summary care records (SCRs) from the system as prohibitive. The Department of Health had offered instead to "mask" or "suppress" unwanted files, making them difficult to access – a process that would nonetheless leave personal details on the database.

SCRs are being introduced as part of an NHS-wide initiative being rolled out across the country to provide clinical staff with information on those they treat.

Any doctor or nurse will have instant access to a summary of a patient's past medication, adverse drug reactions, allergies and conditions – which could be useful if that patient is unconscious or unable to recall vital details.

SCRs are also being used to record confidential treatment requests including end of life plans, where people ask to be allowed to die at home or enter instructions such as "do not resuscitate".

Bolton and Bury in first wave

Pilot schemes began in Bolton and Bury, and so far more than 280,000 SCRs have been created nationally. The Department of Health says that 98% of people who have had the advantages of SCRs explained to them are in favour.

But Dr Gillian Braunold, a medical director of the programme, acknowledged that "a significant minority" of people "don't want to have a summary care record". The new position, she said, was that "the deletion option is there if [individuals] are not happy … They can choose to have [their SCR] deleted physically."

The only exception would be if the patient's SCR file had already been used, in which case it would be archived for "medico-legal" reasons, she added.

A few rebel GPs have been encouraging patients to opt out en masse. There are worries that an individual other than relevant clinical staff could gain access to such sensitive data.

One Hampshire GP, Neil Bhatia, has asked the ICO whether it considers the SCR policy is consistent with data protection principles.

Opt Out or Delete

Connecting for Health (CfH), the NHS agency developing the records system, had already granted patients the right to opt out of the scheme at an initial stage – resulting in no SCR being created.

The latest complex issue concerned whether those enrolled on to the SCR database should subsequently have a right to have their file thoroughly purged from – rather than merely "masked" within – the system if they withdraw consent.

The dispute was resolved in talks between the Information Commissioners Office and Connecting for Health. The Information Commissioners Office has usually decided that personal information that is no longer required should always be deleted.
 

Source