Health Quango Cuts and HIV

posted: 27/07/2010

Eighteen health quangos will be cut to between eight and 10 over the next four years. The Health Protection Agency (HPA), which deals with HIV and infectious diseases, is one that will disappear within the next two years.
 

The Health Secretary Andrew Lansley justifies the quango cuts on the grounds that it would produce savings of more than £180m over the next four years by streamlining their functions and cutting their bureaucracy. Although the Department of Health's overall budget is being "ring-fenced", the growing demands on the NHS each year mean that significant savings need to be found.
 

Expert Criticism

Experts in infectious diseases criticised the plan to abolish the HPA as a statutory organisation and transfer its functions to the Secretary of State’s new Public Health Service. "It's a very bad idea because the HPA is an absolutely essential national resource," said Hugh Pennington, emeritus professor of bacteriology at Aberdeen University. "There is no merit in making changes to the HPA other than those that strengthen it. It's quasi-independent and a degree of separation between it and the rest of government gives it more scientific freedom and independence," Professor Pennington said.
 

The HPA plays an important role in monitoring and preventing HIV and other sexually transmitted infections in the UK. At the recent International Conference in Vienna it presented important research results and recommendations. Transfering its work to the Secretary of State’s new Public Health Service means its valuable independence disappears.

The HPA in the Department's Quango Review

Here is what the Department of Health Review reports says about abolishing the HPA and setting up a Public Health Service within the Department of Health under the Secretary of State.
 

"3.42 We propose to support the cross-government public health strategy through the creation of a new Public Health Service directly accountable to the Secretary of State, to integrate and streamline existing health improvement and protection bodies and functions, with an increased emphasis on research, analysis and evaluation. As a part of that development we intend to abolish the Health Protection Agency and the National Treatment Agency for Substance Misuse as statutory organisations and transfer their functions to the Secretary of State as part of the Public Health Service.
[3.43 a paragraph about absorbing the National Treatment Agency for Substance Misuse into the Public Health Service.]
 

3.44 Our programme for public health will be set out later this year and more detail on what it means for these two organisations, and dedicated public health ring-fenced funding to support delivery of local services, will be set out in the context of the new Public Health Service. We will engage with the Health Protection Agency and the National Treatment Agency for Substance Misuse to ensure a smooth and orderly transition.
....

Legislative Changes
5.7 Many of the changes outlined in this document will require primary and secondary legislation. The Queen’s speech included a major Health Bill and a Public Bodies Bill for the first legislative programme. The Government will introduce these bills this autumn and the changes, where appropriate, will be enacted through one of these bills: our intention is that the majority of changes will be in place during 2012/13.
.....

The Public Health Service will in place by April 2012. (Annex C)"
 

DH Arms Length Body Review report

Source

Department of Health press release

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 

HIV Treatment Charging Harms

posted: 28/06/2010

The UK rules that mean some migrants have to pay for HIV treatment are harming the health of migrants and the UK public, says a new study in the journal AIDS Care.

The study of African migrants with HIV in London found some migrants delay taking HIV tests, some only go for HIV treatment when they are so sick they need an ambulance to take them to hospital, some use herbal treatments that don't work, and others send abroad for HIV drugs but don't take enough of these.
 

Findings and the government review

This Wednesday the government ends its public consultation on changing the rules and guidance about who has a right to free NHS treatment. Anyone who has a sexually transmitted infection (STI) or an Infections Disease always has a right to free treatment, but not if they have HIV. The proposed new rules and guidelines still bar some migrants from automatic free HIV treatment. While asylum seekers and those with leave to remain are entitled to free care in NHS hospitals, refused asylum seekers and undocumented migrants, including pregnant women with HIV, among others, are sometimes handed very large bills for HIV and other medical treatment.
 

The researchers interviewed HIV-positive migrants from Zimbabwe, Zambia and South Africa who live in London. 70 people took part in eleven focus group discussions.
 

Problems getting a GP
Even though there is no law stopping migrants from having a GP or free primary care, people said they had problems even registering with a GP. They are often asked to show documents that they do not have (for example, their passport – these are often held by the Home Office / UK Borders Agency because they are making an asylum claim or other application).
 

Waiting until you need an ambulance
The law says all treatment in a hospital Accident & Emergency department is free-of-charge for everyone. Many people in the survey knew this, and said they did not try to get treatment until their condition was so serious that an ambulance was needed. One man said:
“You would rather wait for a situation where you get taken to hospital by ambulance because even if you walk in they want to know who is your GP. And if you don’t have one they become very suspicious.”
Accident & Emergency (A&E) treatment is extremely expensive to provide. Moreover, in most cases, the person then needed immediate HIV treatment and a lengthy stay in hospital.

The rules say if you are admitted to a hospital ward after A&E, or are referred to another department (eg the HIV clinic) then you will be charged; but HIV treatment should always be provided because it is 'immediately necessary.' If you can't pay the bills, the hospital will have to cancel the debt anyway.

Some people had received bills for several thousand pounds for hospital admissions, surgery and treatment. The researchers found that these experiences often affected people’s feelings toward health providers.
 

In hospital but fearing bills and immigration
People who were entitled to free NHS care feared intrusive visits from immigration and hospital officials. For example one woman who had been recently diagnosed with HIV received a bill for hospital treatment:
“I was worried how am I going to pay this £4000? So what kills you first is the stress and worry . . . I found myself thinking if I did not have indefinite leave to remain in this country then what would I do?... You’d just try to go away, you’d remove the drip and run away from there before immigration got there.”
 

Do it Yourself treatment
Some people said they treated themselves. Some sent for drugs in their home countries, but said they took too few pills for them to work properly, for example. Some had depended on herbal remedies and other alternative treatments, and sometimes delayed taking a HIV test until it was clear herbal and alternative treatments were not working. One woman said:
"There are some people who do not have papers in this country, who can’t have access to a GP or a hospital and they have to rely a lot on the traditional medicines."
Although HIV testing is free for all (on public health grounds), HIV treatment is not. People said this discouraged others from HIV tests:
“If I cannot access services, then there is no reason for me to test. If I test and I know I’m HIV-positive, I know it will be very difficult to access [treatment].”

The researchers end by saying that current policies for charging some migrants may appease a part of the UK electorate but act as a barrier to the uptake of HIV testing and treatment. Moreover, these policies are pushing some people to resort to other forms of treatment that may be costly, harmful or ineffective. As well as having implications for the health of individuals, the policies are likely to have an impact on the onward transmission of HIV.
 

Campaigning for free HIV treatment for all
This Wednesday the Department of Health closes its public consultation on planned changes to the rules and guidance for free NHS treatment. This does not include adding HIV to the list of sexually transmitted infections and infectious diseases that would mean free treatment for everyone. George House Trust and the HIV sector are campaigning for free HIV treatment for all.

Source and reference 
Thomas F et al. ‘‘If I cannot access services, then there is no reason for me to test’’: the impacts of health service charges on HIV testing and treatment amongst migrants in England. AIDS Care 22: 526-531, 2010.

HIV Treatment Rights Review

posted: 23/06/2010

Wednesday 30 June is the last chance to tell the Department of Health whether its plan to update the law and official guidance on who is entitled to free NHS hospital treatment is right. At present some migrants with HIV are charged for HIV treatment, although every other sexually transmitted infection (STI) and infectious disease is always treated for free, for everyone. The rules affect lots of other people in other ways but our focus is on access for all people in this country to free HIV treatment.

Free treatment for STIs like HIV, and infectious diseases makes financial and disease management sense. It saves money and stops diseases spreading when states provide free treatment for these for public health reasons. Untreated conditions spread diseases and increase the total bill.

New Regulations - useful changes
The new regulations propose some useful changes:

• Refused asylum seekers getting Section 4 or Section 95 support will be exempt from charges
• Primary care services are explicitly excluded from charging
• Unaccompanied migrant children will be exempt from charges
• People with an Article 3 claim will be included alongside people seeking asylum or humanitarian protection, and so will be exempt from charges

New Guidance - some good bits

The new official Guidance is also better:

• Maternity treatment is now defined as 'immediately necessary' treatment. This means there will always be a right to treatment and it must be provided. But a bill could follow.
• The Guidance does not yet say, but we are hopeful that HIV will also be defined as ‘Immediately necessary treatment’ because that is what the British HIV Association has formally told the Department of Health.
• Overseas Visitors Managers and clinicians are instructed to tell patients that all ‘immediately necessary’ treatment will not be withheld, regardless of their ability to pay.

Want to help?

The major problem with the rules is that there is still no automatic right to free HIV treatment. The Department of Health says it is reviewing this rule. We think this shouldn't wait a moment longer and HIV community organisations are making the case now for free HIV treatment for all.

The review of the rules and guidance was started before the election. Now there has been a change of government, an emergency budget, cuts and more cuts to come in the autumn Spending Review, so it is important to support the positive changes they have made. We want to push the Department of Health to take the sensible next step of adding HIV treatment to the list of Sexually Transmitted Infections and Infectious Diseases which are all treated for free, whoever you may be. And we want to discourage the Government from making some unhelpful changes that it plans.
 

NAT (National AIDS Trust) response

NAT have prepared a fairly simple response for some HIV organisations. This deals with the key points. You could use this - just add your name and details in the first pages and send it to them by email. You can of course say whatever you wish and make your own points.
 

If you want to comment in more detail you could look for more in the Model Response you can find on a blog set up by Medact and other community organisations that are campaigning together.
 

Here are all the Department of Health papers for the consultation. 

George House Trust draft response

Here you can read the draft response of George House Trust.
Please note that this is not our final or official view but we are sharing this to help others, before the official deadline. We welcome any comments and suggestions.

We have considerable experience with HIV treatment charging and this draft is built on our experience, expertise, and we are especially grateful to NAT and the blog for their detailed work on this. 

This George House Trust draft is more detailed than the NAT response above and it includes some significant additions. 

Two of these George House Trust extras are 

• much better Guidance is needed on who fits the definition of 'ordinarily resident'. The details are for legal experts BUT this is really important. The poor Guidance on who is 'ordinarily resident' has caused most of the problems with charges for HIV treatment in NW England. We have won almost every case we have argued on this point. We have been able to argue that most migrants with HIV who are charged are in fact 'ordinarily resident' in this country and so should never have been charged. If you can show you are 'ordinarily resident' none of the charging rules apply.
• There is no system for independent reviews or appeals - like there is if your claim for a state benefit is refused, or your asylum claim or immigration appeal is refused. In the 21st century, basic rights like hospital care deserve a system of independent reviews and appeals considered by an independent Tribunal chaired by a judge, so people can obtain justice and justice is seen to be done.