Training for Councils - No Recourse to Public Funds

posted: 21/12/2009

A full day's training for councils on their legal duties to support people and families with ‘no recourse to public funds’ (NRPF) is provided by the NRPF Network along with London’s Islington Council. A significant number of migrants with HIV in NW England are subject to the No Recourse to Public Funds rules. Some NW England councils apply the rules very harshly or refuse to even accept they have any legal duty to assess people or help. Other councils do their duty well.

The training

• focuses on good practice in assessing and supporting people with NRPF
• provides an overview of relevant legislation and case-law and
• invites participants to explore other factors to be considered where immigration status impacts on entitlements to services in the UK.

Since April 2009, there have been 17 of these sessions for councils and voluntary sector organisations across the UK and the feedback is very positive.

The full details of the training days are on the NRPF microsite and any requests or enquiries can be made by email

In NW England councils vary widely in how well they perform meet their legal duties towards people with HIV under these rules.  
 

HIV Harassment Investigation

posted: 08/12/2009

Public bodies in England, Scotland and Wales face an inquiry into how they deal with disability-related harassment by the Commission for Equality and Human Rights, the watchdog announced.
 

The commission promises that bodies that do not adequately uphold the rights of people with disabilities, including everyone living with HIV, could face legal action.

Public bodies have a legal duty to take steps to eliminate disability-related harassment – part of their disability equality duties.
 

The inquiry, which will publish its final report in early 2011, follows the inquest into the deaths of Fiona Pilkington and her disabled daughter Francesca. Their deaths followed years of harassment and exposed weak public responses to tackling this.
 

EHRC commissioner Mike Smith said: "Disabled people experiencing harassment can become conditioned to hostile treatment, or are sometimes told to ignore it by those around them - including by public authorities. They may also go to enormous lengths to avoid putting themselves at risk which can limit their freedom and opportunities. These are unacceptable outcomes for anyone in our society."
 

Evidence exists
The commission said it already had evidence that harassment of disabled people was widespread throughout Britain and that people with learning disabilities and mental health problems were at a particularly high risk. People living with HIV similarly may experience significant harassment and violence because of stigma.
 

What are Councils and Health Bodies actually doing?
The Inquiry will look at what public bodies are doing to end disability-related harassment and to deal with its causes, including prejudice and negative attitudes; and how public authorities have involved people with disabilities in eliminating harassment and its causes – for example by effective joined-up reporting procedures.
 

Ruth Scott, director of policy and campaigns at disability Scope, said: "We would like to see the inquiry focus on how public authorities are raising awareness of disability related harassment among disabled people, to increase their confidence in reporting such cases, and supporting and training frontline staff across public authorities to ensure they respond appropriately and promptly."
A document outlining the terms of reference will be published shortly for consultation and the terms will be finalised early next year. The whole review will be completed within the year.
 

Have you evidence?

The Inquiry will collect evidence from people with HIV and other disabilities and from people affected by disability-related harassment (such as HIV negative partners and family) and from public authorities on what they are doing to tackle the issue.
 

George House Trust will work with other HIV bodies to collect and submit evidence of HIV harassment. Few cases are ever reported, mainly because of HIV stigma and the belief that complaining won’t change things for the better. This investigation, linked to the use (or not) of public powers to deal with HIV stigma, is the best opportunity to make councils, police and health bodies take real action to cut HIV harassment in society.

If people have information on HIV harassment in NW England please contact HIV Policy worker Chris at George House Trust.
 

The investigation follows the recent publication of the UK HIV Stigma Index - information in our recent report and also here. 
 

Good practice too
The Inquiry may also aim to identify examples of good practice in eliminating disability related harassment and addressing its causes.
 

The Commission will consider how public authorities have complied with their obligations in relation to the Disability Equality Duty set out in the Disability Discrimination Act 1995, the Human Rights Act, and the UN Convention on the Rights of Persons with Disabilities.
 

Useful Information and Guidance

Public Bodies Duties Guidance 
ECHR report – Promoting the safety and security of disabled people 

Sources          The ECHR press release              Community Care 
 

Can we trust HIV drug trials?

posted: 05/10/2009

How far can we trust HIV drug companies? This month, while the media fretted about whether swine flu vaccine may have killed a teenager (it didn’t), the real death action is hidden in a dry report from the Journal of the American Medical Association which has published a damning scientific paper.
 

Dodgy Drug Trial Tricks
We have known for decades that you can’t always trust what you read in journals publishing research into new drugs and treatments. One problem is 'Missing Trials' - drug trials often go missing: a drug company might do eight trials of a drug, say, but only two have a positive result. The positive trial results are published, while the six with negative results never appear. This censoring harms people, because the results of all 8 trials when combined might show that the treatment doesn’t work, so people are given treatment that is not effective and face unnecessary side effects.
 

The other drug trials fiddle is researchers who change their stated goal, or "primary outcome", after their trial has finished. You might do a trial on a blood pressure pill, for example, stating that you will look to see if it can reduce heart attacks, but find that it doesn't. Then you might retrospectively change the purpose of your study, ignore the heart attacks, pretend it was only ever about blood pressure, and glowingly report a reduction in blood pressure as if this was what you were always interested in. Or you might measure so many different things that some of them will show up as positive simply by chance.
 

The solution isn’t working
Both of these dodgy drug research problems were supposed to have been fixed by clinical trials registers. Before you start your drug trial you should publish in the clinical trials register your protocol, saying what your primary outcome is, how many people are in your trial, when it will finish, and so on. People can check this and the published academic paper (if it appears) to see if your trial went ‘missing’, or if you misled people by changing your primary outcome.
 

Clinical Trials Registers only block bias in drug treatment publications if the Registers are strictly enforced. A check has shown the system doesn’t really work at all. We should not assume HIV drug treatment results published in journals are full and complete.

In 2005 the International Committee of Medical Journal Editors announced they would only publish trials that had been registered. Many journals do check initial protocols against finished academic papers.

Sylvain Matthieu and colleagues checked up how well this system is working and have published their damning findings in the Journal of the American Medical Association. They gathered all of the randomised, controlled trials from cardiology, rheumatology, and gastroenterology in the 10 biggest general medical and speciality journals from 2008.
 

Both dodgy tactics are widespread
Of these 323 trials less than half were adequately registered before the end of the trial, with the primary outcome clearly specified. Trial registration was entirely lacking for 89 trials. Drug companies know they can get away without registering trials, and so the deaths caused by missing data will continue.
 

Then they looked more closely at the trials that were properly registered, and found repeated discrepancies between the outcomes stated at registration and the outcomes published in the final paper, in a third of all papers. In almost all the papers where it was possible to assess the switch, a duff outcome was dropped in favour of one that showed a positive finding.
 

System Failure

You might find it boring, but our failure to ensure full, undistorted publication of all treatment trial data is the single most important issue in medicine today, because this is the only way we can know whether a treatment does good, or harm. The story may be less emotive than one dead teenager, but it costs many more lives – and you should struggle to be angry about it, because the boring regulators we trust to monitor boring problems have repeatedly failed us on this one.
Instead, we rely on good will and vague promises, monitored only by an occasional analysis from an academic on a whim. This is a broken system.
 

What about HIV?

While this study didn’t look into bias in publications of HIV drug trials, there is no reason to believe that HIV drug trials are better than those, criticised here, for cardiology, rheumatology, and gastroenterology. Read all with caution.

Source

image source 

Travelling to Hospitals?

posted: 18/09/2009

Find out about public transport to hospitals in Greater Manchester with a new leaflet. It’s got information on choosing the right ticket for your journey, cheap tickets, checking bus times by mobile phone, where to get information on which buses will take you to hospital and advice on fares. Some people can get free travel or other help getting to hospitals. You can download the leaflet here

leaflet for your hospital

At this web page you can download leaflets for how to find your way to whichever hospital you need to go to in Greater Manchester 
 

You can also call the Traveline 0871 200 22 33 (10p per minute from a landline)

You can get all the hospital travel leaflets in large print or on tape by telephoning 0781 200 22 33 (call cost 10p per minute from landlines). Lines are open 7am to 8pm Monday to Friday, 8am to 8pm Saturdays, Sundays and public holidays.

How can you travel for less?
If you cannot use buses because you are disabled, you may be able to claim GMPTE Travel Vouchers to help with the costs of transport.
 

You may qualify for travel vouchers if you are a resident in Greater Manchester and:

• you are registered blind or
• you are in receipt of DLA (Disability Living Allowance Higher Rate Mobility Component), or
• you are in receipt of Higher Rate Attendance Allowance, or
• you are in receipt of the War Pensioners Mobility Supplement

For further information contact the GMPTE passes and permits department on 0161 244 1050.

For advice on the best way to travel to hospital and for timetables for the bus services please visit you local GMPTE Travelshop situated at all Bus Stations or phone the Traveline 0871 200 22 33 (10p per minute from a landline) or the travelline website . You can also order timetables and leaflets by calling the Traveline number - Traveline 0871 200 22 33 (10p per minute from a landline).
 

Patients on low income may be entitled to claim back travel costs. For details ask for Leaflet HC11 from your local post office, from the Department for Work and Pensions or ask at the hospital’s Cashiers’s Office.

Hospital Detention for HIV

posted: 07/09/2009

How many people now remember that 24 years ago a Manchester gay man with HIV was locked up for 10 days in the  hospital by order of the city's Magistrates, just because he had AIDS?

It has never happened since in this country, but HIV lock-ups often happen in Sweden, and might even happen once again in this country, if Parliament allows the Department of Health and the Health Protection Agency to get their way.

The government is consulting on changing the infectious diseases regulations which could allow it to force people into hospital isolation wards and more, if they have infectious diseases. The deadline for comments on the proposed rules is at the end of this month.

We are campaigning to make sure people living with HIV cannot be touched by any updated public health law and regulations.

What happened almost 25 years ago in Manchester?
There is a very brief mention in our history page for 1985,  but it was an event that rocketed Manchester and HIV onto the front page of the papers locally and nationally. Manchester AIDS-line, which became George House Trust, was closely involved and (now Councillor) Paul Fairweather, a gay rights worker at the former Gay Centre in Bloom Street, was in the thick of the campaigning. There were pickets outside the Town Hall and the old Monsall Isolation Hospital, and a national demonstration was held here. We’ve never forgotten it, and at Secrets and Lives, Cllr Paul Fairweather reminded our audience about it.

Old files and papers

We've dusted off old files and the papers to find out exactly what happened and tell the story again here. We’ll be reminding the government that they didn’t get away with discriminating against people with HIV in 1985, and shouldn’t even be thinking of making laws and regulations that would allow this again today.

What was it like in 1985?
It’s a bygone age in UK HIV history. For a start no-one talked about HIV - if people ever talked about the virus, they called it HTLV3. There were no tests available at clinics for it in Manchester, only in London.

There were only two people known to have AIDS in the city, and both gay men were ill in Monsall Hospital. In the whole of the UK there were only 100 people, gay men and haemophiliacs, with AIDS at the start of 1985. Now there are over 70,000 with HIV.

We knew the virus was sexually transmitted but not how exactly - so oral sex was thought to be high risk, as well as anal and vaginal sex. The connection between the virus and AIDS wasn’t properly understood. Gay men were struggling to get to grips with the idea of using condoms.

Hysteria and Panic

It was at the height of AIDS hysteria, but the first public campaign - the tombstone and leaflet campaign warning Don’t Die of AIDS - didn’t start until the following year, 1986.

In the UK press, AIDS was in the headlines and caused alarm. In most newspapers such as the Sun and Manchester Evening News, and on radio stations (Piccadilly Radio - now Key 103 and Magic), the prejudice was obvious.

Haemophiliacs were "innocent victims," whereas gay men and injecting drug-users brought it upon themselves. Firemen banned the kiss of life, and holiday makers cut short cruises on the QE2 for fear of getting AIDS from a passenger. A 9-year old haemophiliac was allowed to go to school, but some parents kept kids away. Actor Rock Hudson died of AIDS in the first days of October. He was the first major public figure known to die of AIDS. Almost as much of a shock to most people was to discover such a butch film star was gay.

Swirling in a cesspit of our own making - Manchester Chief Constable

And the Chief Constable of Greater Manchester Police, James Anderton, preached that gay men were "swirling about in a human cesspit of their own making". Gay papers, like Capital Gay and Mancunian Gay, provided the most accurate news and information.
 

Can I go home please, just for the weekend?

One of the two men in Monsall Hospital decided in the middle of September 1985 that he wanted a weekend break from hospital, to go to his home in South Manchester, where he would be looked after by his friends and family, and then he’d go back in the hospital. He asked his doctor if he could do this one Saturday morning. The doctor refused. In fact the doctor couldn’t stop him leaving the hospital and knew this, but didn’t tell the man.

Whirlwind of events that Saturday

A whirlwind of events followed that Saturday. We don’t know why, but the doctor panicked. He called the Council’s medical officer and asked her to stop him leaving the hospital. She called the Chair of the Environmental Services Committee, who authorised the making of an emergency application to the Magistrates Court.

The City Solicitor was called in and a special sitting of the Magistrates was held. The Magistrates, in open court, granted an Order for 3 weeks detention in the hospital, named him and said it was to protect the public from AIDS.

The hostile local press and independent radio were tipped off and his name and the details were broadcast and published - including in the national press.

The man has no idea any of this is going on behind his back, until he was presented with the Court Order.

10 days detained by Court Order

He spent the next 10 days in compulsory detention at hospital before he and his friends could get a solicitor and the Crown Court could review the decision. No doubt the stress added to his health problems.

Outrage and Uproar

Meanwhile absolute uproar broke out in the city’s gay community. The Council had already promised to do what it could to dampen down AIDS hysteria. But here was the council using the courts in a way which just poured petrol on the flames of that hysteria. The Public Health (infectious Diseases) Act had been rushed through Parliament only in the summer of the year before (1984) and in February of 1985, AIDS was quickly added to the official list of infectious diseases. Now the Council was using that panic list and law to detain a gay man who posed no health threat to anyone.

There were demonstrations and pickets outside the hospital and Town Hall.

Crown Court frees man

The Crown Court decided to approve the application by the man's solicitor for the order to be withdrawn 'by consent.' The man was spared the rest of the 11 days of forcible detention.

Withdrawal ‘by consent’ means the Council didn't attempt to defend its application, and it could not have produced a shred of evidence to justify the man's continued detention, because legally it was indefensible - he was no health risk to anyone.

A city behaving badly - but then it promises: never again
The city’s gay men’s consultative committee demanded the city council promise never to use the law again, and to campaign for its repeal. The vote was tight, but it agreed not to use the law again.

All involved - hospital doctor, city health officer, chair of social services, city solicitor, magistrates clerk, magistrates, the radio and press, all behaved badly. They had no legal power to act as they did in the circumstances and all were swept up in the panic and power-rush of taking emergency action. Nobody stopped to think and ask questions. No-one told the man in Monsall. He had no solicitor to say the law doesn’t allow you to do this to me.

Why are we concerned now?
In Sweden a man with HIV was ordered to be detained and isolated under their public health laws for an incredible seven years. Detention and isolation happens to quite a number of people with HIV in Sweden. Fortunately the European Court of Human Rights said in 2005 that this is illegal and breaches people's human rights under Article 5.

They ruled that detention for HIV always has to be a last resort, after everything else has been tried and has failed to prevent the person from passing it on. We don't think that judgement goes far enough - after all the criminal law can be used against reckless sexual transmission of HIV and that's more than enough protection for public health. But at least the European Court has drawn a useful line in the sand to protect people with HIV from unreasonable detention on health grounds.

There are some infectious diseases that are passed on easily by day to day contact. If they are serious - for example multiple drug-resistant TB - then there is a case for using the law to prevent its spread and protect the public, but only if the person doesn’t agree to temporary isolation for treatment, until they are no longer a risk to others.

Why are Sexually Transmitted Infections even on the list of infectious diseases?

Sexually Transmitted Infections (STIs) are not public health hazards like drug-resistant TB. HIV and other sexually transmitted infections aren’t passed on by touching, sneezing and the like. People need to have sex with the person and even then the risk of HIV transmission is pretty low. We think there is no case at all for any STI to be included in public health powers in the 21st century in the UK.

HIV - we take action and we fight back

The government seems not to have learnt anything from Manchester's shameful behaviour in 1985 - you mess with people with HIV at your peril. We won’t stand for it again. We take action and we fight back. And we hope Manchester City Council will now do as it was asked 24 years ago and campaign to remove any possibility of this happening again under public health laws and regulations. 

Here’s a full transcript of the 1985 reports in Mancunian Gay - written by the campaigners in the thick of the action. You can see this for yourself, along with other papers in the local history collection, in Manchester central library, St Peter’s Square.

The European Court of Human Rights judgment Enhorn v Sweden 2005

A useful article on the Enhorn v Sweden and its application to UK Public Health law and the detention of people living with HIV 

[Medical Law Review 2006 14(1):132-143; doi:10.1093/medlaw/fwi038
© The Author [2005]. Published by Oxford University Press; all rights reserved.
The online version of this article is published under open access. Users are entitled to disseminate etc. this article for non-commercial purposes provided that: the original authorship is properly and fully attributed; the Journal and Oxford University Press are attributed as the original place of publication with the correct citation details given.]