Monthly Archives: February 2014

Raise awareness of HIV and Poverty in your area

chickpea

Remember this article where we mentioned that thousands of people with HIV have been left struggling in poverty by the Government’s welfare reforms?  (Some people can’t even afford basic food which is need to take with HIV medicines).

In that, we shared the Terrence Higgins Trust report on HIV and Poverty, it’s worth a read, click here for your copy of the report.  It’s based on evidence gathered from the THT’s Hardship Fund and The Food Chain.

The factors that push people into poverty are varied and complex. Having HIV can contribute to a deteriorating financial situation. In turn financial hardship can lead to more significant health problems for those living with HIV.

Local councils, including Leicester City and Leicestershire County councils have a responsibility for the health and wellbeing of the people in their community. It is vital that they know about the needs of people living with HIV in our area so that they can factor them into their strategies for health and support.  They need our support, otherwise how can they plan their budgets effectively if we don’t inform them of the issues we face locally?

You can help raise awareness by emailing your Cabinet Member for Health to tell them about the HIV and Poverty Report and ask them whether the needs of people living with HIV are a part of their planned health and support services.

The Terrence Higgins Trust have created a simple email which you can send to your Cabinet Member for Health. Simply complete your details an email will be generated which you can customise before sending.

So before you click away and read another post, or share this to your networks.. ask yourself, “What can I do“? – You can click here and email your local Cabinet Member for Health! We encourage you do so.

Thanks,

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Training Sessions at LASS

LASS HIV Pocket

LASS offer a range of training workshops to educate and inform on a variety of aspects on HIV.  Heres our schedule from February to March 2014.  All sessions include group discussions and some include guest speakers. Please book using the LASS training booking form (word) (pdf) and email it to training@lass.org.uk.  ALternatively, please call 0116 2559995. 

HIV Basics

Friday 14th March 10.30 – 13:00

Elementary information about HIV, transmission, risks, testing and statistics. This will be of interest to anyone who currently has limited knowledge about HIV.

HIV & the Law
Friday 28th March: 09:30 – 13:30 (with Robert James)

A session to discuss the current situation about HIV & the Law – with information from the recent Keeping Confidence workshop organised by Sigma Research and Birkbeck College. (For full details and to book, please visit this post).

HIV and New testing opportunities workshop
Friday 11th April: 10:00 – 13:00

A workshop on home testing – exploring what the implications of home testing (e.g. inter alia competence in self testing, state of mind of the tester, social implications after receiving one’s result etc), what measures can be put in place in order to ensure it is a success e.g. working with kit providers such as pharmacies

Please note that sessions will start promptly and late comers may not be admitted to the session.

HIV & Relationships
Friday 25th April: 10: – 13:00 

There will be several workshops on the theme of HIV & relationships with the objectives of exploring different topics including:

  • Disclosure – talking about HIV Status with different people in your life
  • Sexual Health Q & A
  • Sero-discordant relationships
  • Getting tested as a couple
  • Family relationships and knowledge

HIV AND SEX FOR MONEY (DATE CHANGED)
FRIDAY 5TH MAY: 10:00 – 13:00 (NEW FUTURES)

We have had to postpone the above training session from February to Friday 5th May.  We will set up eventbrite booking for this and will provide more information closer to the time of training.

Prostitution: Perception & ideology

  • The aim of the session is to demonstrate how and why some people get involved in prostitution, try and dispel some myths and stereotypes of those concerned and why they may remain in the street and indoor prostitution (issues involved could be love for sex, supplementing income, not getting enough sex from partner etc, adventure)
  • The session has been designed to demonstrate how prevailing belief systems about prostitution in society have a direct often negative impact on the lives of those involved
  • The session will also explore the impact that being involved in prostitution has on an individuals’ health, welfare, education and sexual health

You can come along to one, two or all of them – what ever works for you.

Celia Fisher
Sexual Health Promotion Coordinator

Tel: 0116 255 9995
Fax: 0116 255 9979
E-mail: training@lass.org.uk

HIV drug used to reverse effects of virus that causes cervical cancer

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A commonly-used HIV drug has been shown to kill-off the human papilloma virus (HPV) that leads to cervical cancer in a world-first clinical trial led by The University of Manchester with Kenyatta National Hospital (KNH) in Nairobi.
Drs Ian and Lynne Hampson, from the University’s Institute of Cancer Sciences and Dr Innocent Orora Maranga, Consultant in Obstetrics and Gynaecology at KNH in Nairobi examined Kenyan women diagnosed with HPV positive early stage cervical cancer who were treated with the antiviral HIV drug lopinavir in Kenya.
The study looked at 40 women with both high and low-grade pre-cancerous disease of the cervix and the antiviral drug, normally used orally to treat HIV, was self-applied directly to the cervix as a pessary.
The results, due to be presented at two international scientific conferences later this month and next, showed a high proportion of women diagnosed with HPV positive high-grade disease returned to normal following a short course of the new treatment.
The findings build on previous peer-reviewed laboratory based research carried out by Drs Hampson and will be submitted to a journal soon. They have been described by an independent leading specialist in gynaecological cancer as very impressive.
The 40 women, who were all HPV positive with either high-grade, borderline or low grade disease, were treated with one capsule of the antiviral drug twice a day for 2 weeks. Repeat cervical smears showed a marked improvement within one month of the treatment although after three months, there was a definite response. Out of 23 women initially diagnosed with high-grade disease, 19 (82.6%) had returned to normal and two now had low-grade disease giving an overall positive response in 91.2%.of those treated. Furthermore the 17 women initially diagnosed with borderline or low-grade disease also showed similar improvement.
Photographic images of the cervix before and after treatment showed clear regression of the cervical lesions and no adverse reactions were reported.
Dr Ian Hampson said: “For an early stage clinical trial the results have exceeded our expectations. We have seen women with high-grade disease revert to a normal healthy cervix within a comparatively short period of time.
“We are convinced that further optimisation of the dose and treatment period will improve the efficacy still further.
“It is our hope that this treatment has the potential to revolutionise the management of this disease most particularly in developing nations such as Kenya.”
Cervical cancer is caused by infection with human papilloma virus (HPV) and is more than five times more prevalent in East Africa than the UK. In many developing countries, HPV-related cervical cancer is still one of the most common women’s cancers accounting for approximately 290,000 deaths per year worldwide. The same virus also causes a significant proportion of cancers of the mouth and throat in both men and women and this disease is showing an large increase in developed countries, such as the UK, where it is now more than twice as common as cervical cancer.
Dr Lynne Hampson said: “Current HPV Vaccines are prophylactics aimed at preventing the disease rather than curing or treating symptoms. Other than surgery, as yet there is no effective treatment for either HPV infection or the pre-cancerous lesion it causes which is why these results are so exciting.
“Further work is needed but it looks as though this might be a potential treatment to stop early stage cervical cancer caused by HPV.”  On a global scale HPV is the most common sexually transmitted disease.  Although in the developed world vaccination programmes against HPV are well underway, these are not effective in women already infected with the virus. The current vaccines do not protect against all types of HPV and they are expensive, which can limit their use in countries with low resources.
The researchers believe their findings offer a potential cheap and preferably self-administered treatment that could eliminate early-stage HPV infections before these have developed into cancers would therefore have distinct health advantages. Approximately 300,000 women are dying from cervical cancer per annum which is equivalent to 800 per day, one every two minutes mostly in low resource settings.
The research has been backed by Lord Saatchi, whose wife novelist Josephine Hart died of ovarian cancer and has submitted a Private Member’s Medical Innovation Bill to Parliament which he argues would promote “responsible” innovation for medics to try new treatments without the fear of negligence claims. The bill comes amid claims there is currently an estimated average time lag of 17 years for a new treatment or research evidence to reach clinical practice in the UK.
Lord Saatchi said: “What Drs Lynne and Ian Hampson have done is amazing – a classic case of innovation. The fact that they needed to run their trial in Nairobi and that even now there is no guarantee the treatment will be available in the UK any time soon, is a source of immense frustration.”
Dr Ian Hampson added: “This is not something we could have done in the UK due to the associated costs and red tape. We have full ethical approval in Kenya and chose to conduct the trial there because of the extreme need for a self-applied treatment for early stage cervical cancer.“During the trial we provided 820 women with free cervical smear testing in addition to a range of other free medical tests that are not routinely available in Kenya. This was essential in order to identify women with HPV related cervical disease so that we could treat them with lopinavir. It is very significant that during this process we also identified five women who already had invasive cervical cancer and these were immediately referred for surgery.”

The research was funded by the UK Philanthropist Mr Ken Chorlton, the Caring Cancer Trust, United in Cancer Charitable Trust, The Humane Research Trust, Quest Cancer, the Cancer Prevention Research Trust and Hologic.
Professor Pierre Martin-Hirsh, Consultant in Gynaecological and Oncologist and Associate Editor in Chief, the British Journal of Obstetrics and Gynaecological, has described the research as very impressive.
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Thousands of People in the UK Living with HIV Cannot Afford Basic Food, Required to Help Treatment

Empty cuboards

Thousands of people with HIV have been left struggling in poverty by the Government’s welfare reforms – with some unable to afford the basic food they need to fight their condition.

The situation is now so critical that in some cases doctors are having to prescribe food supplements to ensure that patients’ medication works.

A national hardship fund for people with HIV/Aids, run by the Terrence Higgins Trust (THT), registered a 63 per cent increase last year in those needing emergency help because their benefits had been stopped.

HIV experts described the situation as “truly alarming”, saying it was “nothing short of a disgrace” that seriously ill patients in modern Britain were having their treatments compromised by hunger. HIV medication can be less effective if taken without food.

Changes to sickness benefits introduced by the coalition – alongside other welfare reforms such as the so-called bedroom tax – have left many HIV patients significantly worse off.

Stringent criteria for employment support allowance, assessed by the now notorious Atos Healthcare, means that many have been moved off sickness benefits altogether. The replacement of the disability living allowance with the personal independence payment is also affecting growing numbers.

David Asboe, chair of the British HIV Association and a consultant in HIV medicine at Chelsea and Westminster Hospital, said: “Before the past three or four years, I never saw people coming in and saying they didn’t have enough money for food. Now I’ve seen several people in my clinic where the fact that they’ve had a decrease in their income, related to benefit changes, means they can’t afford regular food.

“Sometimes I have to prescribe food supplements to help them. If this is one of the unintended consequences of benefit changes, I think it’s very important that it’s looked at.”

Explaining the medical importance of food to HIV patients, Dr Asboe said: “We know that, in general, if people have poor nutrition, that has a detrimental effect on their immune system. HIV suppresses the immune system, so nutritional problems can exacerbate the effects of it.

“About 70 to 80 per cent of all treatments for HIV have to be taken with a meal. That’s critical to the success of these treatments, and they have to be taken regularly and on time. Taking [medication] with food optimises the absorption and has an impact on effectiveness. There’s one treatment that has to be taken with a 400-calorie meal; there is evidence that, if you take it on an empty stomach, that compromises the treatment.”

Of the 2,179 people given an emergency grant of £250 by THT last year, 919 were on benefits. Overall, there was a 15 per cent rise in applications between 2012 and 2013, but the numbers saying they needed emergency help specifically because their benefits had been cut jumped by 63 per cent.

Just under half of all those given help needed it specifically because they could not afford food.

Pamela Nash MP, chair of the All-Party Parliamentary Group on HIV and Aids, said: “These findings are truly alarming, and hopefully will send shockwaves through Whitehall. I find it deeply saddening that those with HIV in our country are not only having to deal with their condition, but now have the added burden of worrying about their finances.”

Caroline Lucas, Green MP for Brighton Pavilion, who is also a member of the HIV parliamentary group, said: “People with HIV often have to deal with a range of physical, emotional and social problems. It’s absolutely wrong that, on top of that, so many are also being forced into poverty by the coalition’s heartless austerity agenda.”

Paul Ward, THT’s chief executive, said: “What we’ve seen is that progressively more people have had their cases reviewed and, as a consequence, are no longer entitled to benefits at all. For many people with HIV, this isn’t a question of not having enough money to go to the cinema or buy some clothes. It means they have not got enough money to eat properly. For those who are very unwell, it means they struggle to make appointments simply because they don’t have money for the bus fare.

The Terrence Higgins Trust have published a report which provides an insight into the reasons why some people with HIV are living in poverty.

The HIV and Poverty report looks at applications to the their Hardship Fund and why people applied for financial assistance. The report shows that the majority of people applying to the fund were applying for basic living costs including food, clothing and other basic needs.

hiv&poverty

To get a copy of your report, click the icon to the left

In 2012 46 per cent of people given grants had a disposable income (after housing costs) of less than £50 a week and 35 per cent had no disposable income at all. Common drivers were related to unemployment, restricted income, immigration status, family relationships and a lack of support within the community.

“The numbers in this report should act as a warning sign at all levels of government that people with HIV are not receiving the level of support needed to meet the most basic of costs. In an age when highly effective treatments mean that people with HIV can live long and healthy lives, it is nothing short of a disgrace that HIV and poverty should still so often go hand in hand.”

 

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Leicester West MP Liz Kendall HIV patients not helped by NHS shake-up

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MP Liz Kendall with LASS CEO Jenny Hand at the Women’s Health Conference. Photo by Tom Robson

It has been three decades since we first became aware of HIV in Britain. During those dark early years, having HIV was like being given a death sentence.

Fear, stigma, discrimination and ignorance left people suffering in silence and perpetuated the spread of this terrible disease.

We’ve made huge strides forward since the 1980s and organisations such as Leicestershire Aids Support Service (Lass) have led the way.

People with HIV can now expect to live longer, healthier and happier lives. But there is still much more that needs to be done.

Last week, I opened Lass’s conference at De Montfort University, which brought together more than 100 delegates from across the country to discuss the challenges ahead.

First, we must continue to raise public awareness about HIV/Aids because, despite all the progress, it hasn’t gone away.

There are 100,000 people in Britain living with HIV and nearly a quarter of them do not know they have contracted the virus.

The diagnosis rate in Leicester is just over three people for every 1,000 of our population, which is more than twice the national average.

Second, we must redouble our efforts to prevent people getting the disease, including by promoting safe sex, and to encourage more people to get tested.

This means confronting head-on the idea that “it can’t happen to me” and tackling some of the difficult issues around religious belief and stigma. Third, people with HIV need the very best standards of care.

This includes not only clinical treatment but help and advice with housing, employment and personal finances, and emotional support, too.

Unfortunately, these challenges are now harder to address because of the Government’s NHS reorganisation.

Contraception services, testing, treatment and public awareness campaigns have been fragmented.  Responsibilities are now split between national bodies including NHS England and Public Health England and local organisations such as GP clinical commissioning groups and councils.

This does not make sense for patients or get the best value for taxpayers’ money.

The resulting confusion and uncertainty come at the same time as funding for local NHS, council care services and voluntary organisations such as Lass is being cut.

Lass is trying to support people with HIV to better cope with these combined pressures.

Its pioneering women’s programme is helping improve patients’ understanding of their condition and become more involved with their care.

It brings women with HIV together to share their experiences, learn skills, gain qualifications, find work and improve their overall quality of life.

Families and friends are supported, too.

So far, 154 women have benefited. Their relationships with NHS staff have improved, resulting in a better experience of care.

Eight women are now in employment and an additional 13 have enrolled in college courses.

I’m determined to champion the excellent work of organisations such as Lass as a local MP and a member of Labour’s shadow health team.

It’s only by working together that we will address the big health challenges we face, including HIV and Aids.

The LASS Women’s Programme

final-womens-report-1

The LASS Women’s programme is a sustainable project run by women for women, helping them to:

  • Understand more about HIV
  • Become more involved with (and knowledgeable about) their health care
  • Reduce feelings of alienation and isolation
  • Receive and give peer support
  • Learn new skills and gain qualifications
  • Return to (or enter into) the workplace
  • Gain an improved quality of life.

For your copy of the report, please click here

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NHS in England delays Care.Data, the sharing of medical records

caredatadelay

The NHS has delayed for at least six months a controversial plan to share data from people’s medical records last Tuesday following concerns from doctors and patients’ groups, acknowledging there was insufficient public confidence in the scheme.  (Don’t know about the Care.Data scheme? Visit “Care.Data, important information you should know” to get clued up).

The postponement by NHS England was welcomed by critics who had complained too many people did not properly understand the planned new system and the reasons for its introduction, or how they could opt out. Under the original plan, the first medical records were to have been compiled by the care.data system from the start of April.

Supporters say that sharing data, which will include information from GPs’ surgeries for the first time, as well as from hospitals, will make medical advances easier and ultimately save lives because it will allow researchers to investigate drug side-effects or the performance of hospital surgical units by tracking the impact on patients.

But privacy experts have warned there will be no way for the public to work out who has their medical records, or to what use their data will be put. There have been questions raised about commercial companies buying data.

Some doctors’ groups complained that the scheme, while valuable, was poorly understood and badly explained by NHS England, which has said the majority of the data would be anonymised or made impossible for patients to be identified. All 26 million households in England were sent leaflets about the plan but polls showed about two-thirds of people had not seen them.

In a statement, NHS England said the collection of data from GPs’ surgeries would now begin in the autumn – it did not give a more precise date – to permit “more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to”.

A delay so close to the proposed start of a major scheme is a significant embarrassment for the NHS and its attempts to inform the public about the benefits of the database. Labour’s junior health minister, Jamie Reed, was quick to call the delay “another NHS shambles of this government’s own making”.

Tim Kelsey, national director for patients at NHS England, said: “We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared. That is why we are extending the public awareness campaign by an extra six months.”

The extracted information will contain a person’s NHS number, date of birth, postcode, ethnicity and gender. Once live, organisations such as university research departments – but also insurers and drug companies – will be able to apply to the new Health and Social Care Information Centre to gain access to the database. Last year it emerged that the private health insurer Bupa was one of four firms that had been cleared to access sensitive patient data.

The British Medical Association said on Tuesday it had become increasingly plain that people did not know enough about care.data and even with a delay the database should only be implemented with proper public backing.

Chaand Nagpaul, chair of the BMA’s general practitioner’s committee, said: “While the BMA is supportive of using anonymised data to plan and improve the quality of NHS care for patients, this must only be done with the support and consent of the public, and it is only right that they fully understand what the proposals mean to them and what their rights are if they do not wish their data to be extracted.”

The Royal College of GPs called on NHS England to use the extra time to clarify aspects of the system, for example whether amber data – anonymous but containing details that could potentially identify an individual – will be provided for commercial use, and that information to third parties would not be sold for a profit.

Professor Nigel Mathers, honorary secretary of the RCGP, has written to NHS England suggesting a more thorough public information campaign, including TV adverts and a letter to each patient affected.

He said: “We would like to thank NHS England for listening to the concerns of RCGP members and for acting so quickly to announce this pause. The extra time will provide it with the chance to redouble its efforts to inform every patient of their right to opt out, every GP of how the programme will work, and the nation of what robust safeguards will be in place to protect the security of people’s data.”

The scheme’s rollout has been beset by criticisms about the clarity of the information provided to the public. Earlier this month, the information commissioner’s office criticised the campaign for failing to adequately explain what data was involved and how patients could avoid their medical records being shared.

The delay came a day after the solicitors Leigh Day began a legal challenge on behalf of a campaign group, medConfidential, arguing the leaflet sent to households was misleading. The online campaign group 38 Degrees polled 150,000 people, of whom more than 90% said they would opt out.

Sharmila Nebhrajani, chief executive of the Association of Medical Research Charities, said care.data was a good idea in principle that had been “stymied by its execution”. She said: “Charities and their supporting patient groups have always said that sharing data for research can be a really valuable opportunity to speed medical research but it must be done with care, competence and consent.”

NHS-poll-caredata-opt-out-piechart-580

On Wednesday, 38 Degrees an online campaigning community reported they had won a breakthrough in their campaign on NHS Care.data!   Over 150,000 members of 38 Degrees responded to a poll about Care.data. A massive 93% voted to launch an opt-out website – so people could easily choose to exclude our data from Care.data, if NHS England did not address our concerns.

 

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The LASS Women’s Programme

final-womens-report-1

The LASS Women’s programme is a sustainable project run by women for women, helping them to:

  • Understand more about HIV
  • Become more involved with (and knowledgeable about) their health care
  • Reduce feelings of alienation and isolation
  • Receive and give peer support
  • Learn new skills and gain qualifications
  • Return to (or enter into) the workplace
  • Gain an improved quality of life.

Rationale behind the programme

The pressures facing LASS and many other HIV support organisations, were compounded by those facing its service members, many of whom found themselves living in increasingly precarious and difficult circumstances.

LASS were aware of the changing health and social care environment, along with the changing education and employment environment. In addition, budgets have been cut from many of these services, including those provided by LASS. These cuts were even greater than expected, consequently having a far wider and greater impact than initially anticipated. Therefore, LASS took steps to initially concentrate on helping women living with HIV to adapt to the changing environment. Further projects are planned for other groups who are equally affected by these changes.

Leicester has the 6th highest prevalence of HIV outside London in England among people aged between 15 and 59 years. In the UK, people living with HIV are disproportionately represented in the communities of Black African people and gay men

In just one year, 154 women have benefited from this programme, 8 are now in employment, an additional 13 enrolled in college courses and 4 are now delivering sessions to other women enrolling in the programme.

Links with local health care professionals have also been enhanced, so far resulting in a new and improved HIV psychological care pathway.

Please click here for a full copy of the report.

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