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]
 

Source
 

How Fair Are Incapacity Tests?

posted: 30/06/2010

The government has just announced an independent review of how they assess the fitness of people claiming benefits for being too ill or disabled to work. People who claim Employment and Support Allowance and Incapacity Benefit have medical assessments to help decide their claim. Many people living with HIV claim these benefits.

The fairness of medical assessments will be examined in a national review of incapacity assessments, chaired by Professor Malcolm Harrington, an occupational health expert. He will produce a report by the end of the year on whether the assessments are fair and transparent.
 

Burnley first
It has also just been announced that Burnley people, including people living with HIV, will be among the first to transfer from Incapacity Benefit to Employment Support Allowance – and that will involved one of the assessments that are about to be reviewed.
 

Ministers have said they will starting two pilots projects to reassess the 2.6 million existing incapacity benefit claimants using the Employment Support Allowance rules. 1,700 people claiming Incapacity Benefit in Burnley and Aberdeen will start to be reassessed from October 2010, and then this reassessment will be extended nationwide from February 2011.
 

The assessments try to decide whether people claiming the benefits are in fact able to work, or whether they need some support, or whether they cannot work at all and need full sickness benefits for being unable to work at all.
 

Assessments not fair and not working
Disability charities say the current assessments tests are too inflexible, and fail to take into account how long-term conditions (like HIV) can vary from day to day, or from week to week. George House Trust knows there are serious problems with the way these incapacity assessments are done and that people with HIV face a high rate of wrong refusals.
 

Atos Healthcare (who have the government contract for doing Employment Support Allowance assessments) appear to refuse to record basic HIV information like someone’s CD4 count, admit their own HIV ignorance, don’t refer people with HIV to doctors for a full medical assessment as they should, refuse to consider the ‘exceptional circumstances’ rules (regulations 29 and 35), and ignore medical reports from HIV doctors.
 

The advisers at Manchester Advice who specialise in HIV are winning appeals almost before they open their mouths. Independent Tribunals are disturbed and surprised at how plain evidence of obvious incapacity for work due to HIV is ignored, and the failure to follow rules and proper procedures.
 

Disability Discrimination

George House Trust believe this is strong evidence suggesting disability discrimination in the way people with HIV are treated by Atos Healthcare and the Department for Work and Pensions. We are considering formal complaints and other action. 
 

Additional details added to Source 

Living Wills (Advance Decisions)

posted: 30/04/2010

An Advance Decision is the new legal name for what were called Living Wills. An Advance Decision / Living Will is an official paper that tells people in what circumstances you want them to stop giving you certain medical treatment.

These are used by people concerned that in the future, they may become unable to tell the people around them whether they want any more treatment.
 

A recent change in the law (Mental Capacity Act) means Terrence Higgins Trust has suspended its Living Wills Service while it makes sure its Advance Decisions / Living Wills form fits with this law.
 

Things you need to think about

There is much more information on Advance Decisions on the DirectGove website and we recommend you think carefully about the advice given there.

Meanwhile Terrence Higgins Trust suggest you consider this Advance Decision from Compassion in Dying.

Other useful help

Dealing With Death and Bereavement leaflet from THT

Healthcare Confidential

posted: 19/04/2010

NAT have produced Confidentiality in healthcare for people living with HIV. Why does medical confidentiality matter for people living with HIV? What can you expect from the NHS? What difference will the introduction of electronic medical records and changes in NHS information sharing mean for people living with HIV?

This report deals with contact tracing of sexual partners, prosecutions for reckless HIV transmission, testing in different settings, and the new NHS medical records IT systems.
 

Reassure, train, monitor

The report recommends the NHS should do more to reassure people with HIV about their confidentiality, including displaying more prominent information about NHS confidentiality policies. It proposes that NHS staff, particularly those providing new HIV testing, should have early training in HIV and confidentiality. NAT recommends that the NHS IT programme must be regularly monitored, including feedback from people living with HIV.
 

NAT will very soon publish a simple confidentiality in healthcare guide for people living with HIV, explaining what rights people living with HIV have, and what to expect from the NHS. NAT will put this out this Spring.

Confidentiality in Healthcare for people living with HIV        pdf 2.6Mb

or as a direct download from NAT

Help Haiti Earthquake HIV Healthcare

posted: 20/01/2010

Organisations providing HIV treatment and care in Haiti need urgent donations to support their earthquake relief efforts. They already have a lot of experience providing health care in Haiti, and need to do far more because of the extensive damage caused by last week’s devastating earthquake.

HIV worst in Caribbean

Haiti has by far the worst HIV epidemic in the entire Caribbean region.

Partners in Health  has worked in Haiti for nearly 20 years, and has over 100 doctors, 600 nurses and 4000 employees in Haiti working from 10 Partners in Health hospitals providing relief services to those affected by last week’s earthquake. They urgently need donations and medical volunteers; visit StandwithHaiti for further information.

Partners in Health developed a pioneering HIV treatment programme in Haiti, which demonstrated that it was possible to deliver antiretroviral treatment successfully in one of the world’s poorest countries.

MSF  has been operating in Haiti for 19 years and has great experience in HIV and TB care. Now it focusing on running its three hospitals with operating theatres in Port au Prince to perform urgent, lifesaving surgery. Find out how to donate here.

HIV clinic director was meeting Prime Minister when earthquake struck

Weill Cornell Medical College is collecting donations for GHESKIO, which provides HIV and TB care in Port au Prince. Staff at GHESKIO describe how they are trying to continue providing care to thousands of patients with HIV and TB here, while dealing with earthquake damage and casualties. Their Port au Prince HIV clinic is shown above - the picture was taken before the earthquake - the clinic is badly damaged but still standing. The director Dr Jean Pape says - 'I was at a meeting with the Prime Minister, The Minister of Health, the Director General, the Directors of WHO and UNAIDS, USAID staff, others when it all started. We were all able to get out before the room collapsed.' Help the clinic here 

Film-maker and journalist Anne-Christine d’Adesky, who has reported extensively on the global epidemic and has family connections to Haiti, is blogging daily on the situation in Haiti and is providing a comprehensive overview of responses here.

Family Health International, which has worked extensively in Haiti, is also seeking donations for relief efforts.
 

In the USA Aid for AIDS International is collecting unused medicines from people in the USA for shipping to Haiti.
 

source