Author Archives: Tom

Welcome to Caro Hart – Chief Executive of LASS

It is strange coming into a new organisation; new people, new ways of doing things. At the Michael Wood Centre, however, I felt immediately at home.

This was partly because of the way I was recruited; once I had passed the interview with the Trustees, I was invited to the annual LASS and Well for Living planning day. I met staff, trustees, service users and people from other organisations that work closely with LASS and Well for Living. All of them were scoring me on how well I did in the discussions and exercises. Scary stuff! But even then, I saw how welcoming everyone was and how much everyone cared about delivering excellent services to the community.

Going into a new place you always wonder if you’ll fit in. I think it will be a good match as my background is in charity management, including running a Citizens Advice Bureau. I have worked with older peoples’ charities, been Chair of a Healthwatch Stakeholder Panel, worked for an environmental charity and lead a charity working with international students (useful in this neck of the woods!).

For the last few years, I have been running my own community interest company, working with small to medium sized voluntary sector and community groups helping them to get volunteers, funding and other resources and to manage and govern themselves effectively. All of this is going to come in very handy at LASS and Well for Living.

Originally from Hertfordshire, I have lived and worked at various points around the UK. I now live on the Leicestershire-Rutland Border and I am fast growing to appreciate the vibrancy of the City and the beauty of the countryside. I might even land up a Tigers supporter!

Jenny, the outgoing CEO, and the teams at both LASS and Well for Living have made me feel so welcome. I hope that we can have a long a fruitful relationship.

 

Jenny Hand – LASS CEO due to retire from LASS next week.

w-jenny

Jenny Hand LASS CEO since 2008

Jenny Hand has been the CEO at LASS, Leicestershire’s HIV specialist charity for almost 10 years and will retire in June this year . With Jenny at the helm, LASS has moved forward with the changes in HIV medication and support, advice, information, prevention and awareness needs. In 2013 LASS was recognised best 10 health charities in the country with a £30,000 Impact Award from GSK with the Kings Fund. LASS continues to benefit from being a member of the Impact Award alumni attending Kings Fund training with other Award winners and taking part in research and reviews.

LASS was among the first charities in the Country to introduce free instant result HIV community testing, demonstrating huge savings for the health service through enabling people to know their HIV status and be referred for appropriate support and medical treatment through a fast track arrangement.

LASS also set up a social enterprise – trading as Well for Living and through this has worked in partnership with other small local HIV services in the region to provide enhanced awareness and prevention services. Most recently the regional partnership has delivered a public health England funded innovation project promoting HIV testing in the workplace. A full report on this pioneering work is due to be released this spring. Jenny says ‘the findings are very encouraging not only for HIV but for other workplace health awareness developments.’

Patrick Bowe, Chair of the trustees at LASS, is immensely proud of the work achieved at LASS over the past 10 years and while he would have hoped Jenny might stay for a few more years sees this as an opportunity for LASS to recruit a new CEO  who will be able to lead both LASS and Well for Living into the future.  ‘LASS will enter its 30th year in June and there is still a huge amount of work to do before people living with HIV can live without stigma and discrimination and to ensure late diagnosis is prevented. The CEO’s role will be critical in taking forward the organisation.’

Jenny is looking forward to continuing some part time work focussing on partnerships and in supporting organisations through bid writing.  She will have more time with her family and for holidays and travel.  She enjoys playing cello in local orchestras, walking, and playing bridge.  You may even find her volunteering in the local community when she retires.

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Leicester City CCG: highest ever diagnosis of Dementia

A 12 month drive has seen Leicester GP practices diagnose a significantly higher number of dementia patients than the UK national average, exceeding the local target and beating its own diagnosis rates from last year.

The news means more patients living in Leicester have benefited from a timely diagnosis thanks to a continued commitment from Leicester City CCG over the past year.  Each year all CCGs in the country are set a target, based on their patient population, by NHS England to improve diagnosis rates for people with dementia aged 65 and over.  This was as a result of national data collected which showed that only 48% of the estimated number of people with dementia had a formal diagnosis.

Between 1 April 2016 and 31 March 2017, Leicester City CCG was given a target of
diagnosing 67.6% (1,821) of their expected number of patients aged over 65 with dementia. In total, the CCG diagnosed 2,457 patients in the age category – which means 91.2% of the estimated number of people with dementia now have a diagnosis.  This also means the CCG has diagnosed 24% more dementia patients than the national average and the second highest number of patients within the East Midlands region, as well as increasing diagnosis locally by 3%.

Dr Sulaxni Nainani, Leicester City CCG Board member and GP lead for older people and dementia, said: “We are delighted to be achieving such positive results for our patients year after year. However, we will continue the drive on diagnosis. We will continue to work closely with our local health and social care partners to improve awareness and remind people of the importance and benefits of a timely diagnosis. It means patients and their family members or
carers can receive the support they need earlier to help live independently for as long as possible.”


Over the last 12 months Leicester City CCG has continued to work ever closer with GP practices to understand their dementia register list each month, so they were able to keep track of how well they were diagnosing and flag any targets that were not being met. Care Navigators, who support Leicester City patients to remain in their own home, have also received fantastic dementia training, so for the last 12 months they have been able to perform mini memory tests if they or the GP has any concerns about the patient’s memory.


Dr Sulaxni Nainani continued: “Once someone has a confirmed diagnosis of dementia there are services to support both the patient and those around them. These include the Alzheimer’s Hospital Liaison Service at the Leicester Royal Infirmary, Leicester City Council 
Dementia Care Advisors, Age UK, Alzheimer’s Society and the Care Homes Mental Health inreach team. Community memory clinics, tea and coffee mornings and singing cafes are also provided by Leicester City Council.”

The word dementia describes a set of symptoms that may include gradual memory loss and difficulties with thinking, problem-solving or language. These symptoms occur when the brain is damaged by certain diseases, including Alzheimer’s and stroke. However, these symptoms could also be caused by a number of other health conditions such as another illness, reaction to medication or experiencing a stressful time, so it is extremely important to make an appointment to see a GP.

HIV-related cognitive impairment

Alzheimer’s disease is the most common cause of dementia, but there are many rarer diseases and conditions that can lead to dementia, dementia-like symptoms or mild cognitive impairment. Rarer forms of dementia account for only around 5 per cent of all dementia cases in the UK.

Learn more about HIV-related cognitive impairment

HIV-associated neurocognitive disorder (HAND)

HIV causes an infection that weakens the immune system, making it harder for the body to fight infections and disease. HIV infection can cause a number of different problems in the brain, which affect up to half of people with HIV. This is known as HIV-associated neurocognitive disorder (HAND).

Difficulties with memory, thinking and reasoning (aspects of cognition) are common with HIV, but they are usually mild and dementia is much rarer. Before the use of antiretroviral drugs (medication that helps to control HIV), around 20-30 per cent of people with advanced HIV infection previously developed dementia. This figure has now decreased to around 2 per cent.

Neurocognitive disorders in people with HIV may be caused by the virus directly damaging the brain. They may also be the result of a weakened immune system enabling infections and cancers to attack the brain.

Symptoms may include problems with short-term memory, learning, speed of thinking, difficulties with concentration and decision making, unsteadiness and mood changes. People may also have problems with their sense of smell.

Some people with HIV may experience only a few very mild symptoms, such as a decline in the ability to think quickly or clearly. These mild impairments do not amount to dementia.

HIV is easily overlooked as a possible cause of dementia. Even when someone is known to have HIV infection, cognitive impairment can sometimes be difficult to diagnose. This is because the symptoms are similar to those of other conditions, such as depression.

Treatment with a combination of at least three antiretroviral drugs often prevents cognitive impairments worsening and, for many people, can reverse the cognitive damage caused by HIV. Rehabilitation programmes may also help people with HAND to re-learn skills.

To find out more information visit the CCG webpage about dementia at http://ow.ly/BUea3. Alternatively visit http://www.alzheimers.org.uk/ for advice on living well with dementia.

There’s currently an outbreak of Hepatitis A affecting gay and bisexual men.

Hepatitis A outbreak in England under investigation

Public Health England is investigating a hepatitis A outbreak predominantly affecting men who have sex with men. Between July 2016 and 2 April 2017, 266 cases associated with the outbreak had been identified in England. At least 74% of these were among MSM, and 63% of cases were in London. There is evidence that there have been some cases in the wider population linked to the outbreak.

A high proportion of cases likely acquired the infection abroad at the beginning of the outbreak, but transmission now mainly occurs in England. The outbreak comprises three concurrently-circulating genotype Ia strains, previously not seen in England. Hepatitis A outbreaks caused by the same strains are concurrently occurring in 12 European countries and elsewhere in the UK outside of England [1,2].

As part of the outbreak response, PHE together with the British Association for Sexual health and HIV have recommended that MSM with one or more new or casual partner in the last three months are opportunistically vaccinated in GUM clinics at their next appointment. In addition, pop-up vaccination clinics have been set up around gay venues in London. PHE is considering wider vaccination strategies to respond this outbreak, which is occurring in the context of a global shortage of hepatitis A vaccine.

See the PDF version of this report for the epidemiological curve depicting the outbreak.

References:

  1. ECDC (December 2016). Rapid risk assessment: hepatitis A outbreaks in the EU/EEA mostly affecting men who have sex with men.
  2. Beebeejaun K, Degala S, Balogun K, Simms I, Woodhall SC, Heinsbroek E, et al (2017). Outbreak of hepatitis A associated with men who have sex with men (MSM), England, July 2016 to January 2017. Euro. Surveill. 22(5), 2 February.

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National HIV Manifesto & Leicester Halve It Pledge

Join us in challenging local candidates to pledge their support for people living with and affected by hiv. The general election is a crucial opportunity to raise the profile of HIV; please add your voice to our campaign.

We have come a long way since the 1980s. While stigma and discrimination remain, HIV is now a long term condition and individuals are living with HIV into old age. HIV affects individuals of all ages with 95% of people living with HIV of working age. HIV treatment in the UK is excellent, but not everyone living with HIV is doing well. The number of people diagnosed with HIV each year remains high and far too many people are diagnosed late.  Services which help people living with HIV manage their condition are facing continued funding cuts.

We have come so far. We cannot stop now.

WE ARE CALLING ON THE NEXT GOVERNMENT TO:

  1. Commit to tackling the stigma and discrimination faced by people living with HIV.
  2. Fully fund HIV and sexual health services to meet the needs of local communities.
  3. Recognise the importance of prevention to a sustainable health and social care system by increasing investment in public health services.
  4. Equip schools with the resources they need to ensure that high-quality, age-appropriate, lesbian, gay, bisexual and trans (LGBT)-inclusive sex and relationships education is taught to all young people in all schools.
  5. Make PrEP available to all individuals at risk of HIV in the UK.
  6. Develop a fair benefits system that meets the needs of people living with HIV whether in or out of work.
  7. Ensure that the health and social care system is equipped to meet the needs of a population ageing with HIV.

TAKE ACTION NOW

It’s time to pile on the pressure; will your local candidates stand with people affected by HIV? There are some easy ways you can help put HIV on the agenda in this election.  Click here to write to your local candidates, asking them to support our manifesto.

Leicester

Tom Robson holding the Halve It Pledge which Leicester City council and Leicester City MPs signed in 2015.

Late HIV diagnosis in Leicester is 13.8% higher than average in England and Leicester has the 6th highest rate of late diagnosis of HIV in the country.  As a city with these statistics, we are responsible for doing everything we can to ensure these late diagnoses come down and to ensure that people know their HIV status.

In 2015 and as part of the ‘Halve It pledge’, Leicester City Council together with local MPs; Liz Kendall, Jon Ashworth and Keith Vaz united with LASS, Trade and other voluntary sector partners to sign the ‘Halve It pledge’.  The national pledge commits Leicestershire to halve late HIV diagnoses by 2020.

Here you can see, our local MP’s together with our council have actually penned their names to the Halve It Pledge, we hope with your support they will remember to put HIV back on the agenda.

#HIVMANIFESTO

You can Tweet the manifesto to spread the word about our demands – use the hashtag #HIVmanifesto. You can also take a photo of yourself holding our HIV pledge. Download here.

Take it offline: meet with your candidates face-to-face to discuss the points in the manifesto. Go to any local hustings events to do the same, ask questions to see how committed they are to the HIV manifesto. Take a look at this toolkit with details and tips on what questions to ask.

Suggested Tweets

I’ve challenged my local MP candidates to support people living with HIV. Join me by sharing the #HIVmanifesto

HIV is misunderstood and under-funded. Put it back on the agenda this election with the #HIVmanifesto

I pledge to stand with people affected by HIV this general election – do you? #HIVManifesto

I’m calling on the next government to stand with people affected by HIV. #HIVManifesto

Download the full HIV Manifesto

Download the HIV Manifesto pledge board

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Global experts recommend that people with HIV should be vaccinated against meningococcal disease

  • New global recommendation from the world’s leading experts in meningococcal disease
  • Recent evidence shows that people who are HIV positive are at significantly higher risk of meningococcal meningitis
  • In a new paper, experts recommend that countries introduce meningitis vaccination programmes for people living with HIV

The Global Meningococcal Initiative (GMI) – an international group of expert scientists, doctors and public health officials – has recommended that people who are human immunodeficiency virus (HIV)-positive should be vaccinated against meningococcal disease (MD).

This global recommendation has been published in the Journal of Infection.

The recommendation is based on recent studies showing an increased risk of MD in individuals who are HIV positive. Results of surveillance data analysis from 2003–2007 in patients of all ages in South Africa, showed that HIV was associated with a higher incidence of MD and higher rates of death from MD.

Other recent studies, including two from the United States from the 2000s, have found a 13-fold and 10-fold greater risk of MD for those with HIV. Patients in these studies were receiving antiretroviral therapy for HIV and a good standard of healthcare.

Immunogenicity studies have shown that two doses of vaccine to protect against MD are required for people who are HIV positive. Individuals with HIV who have been previously vaccinated with one dose of MenACWY should receive a second dose at the earliest opportunity, and continue to receive boosters at the appropriate interval.

Some countries already have recommendations for vaccination with the MenACWY conjugate vaccine, for example the United States. An important issue with such recommendations is, however, the cost of the conjugate vaccine, particularly in low-/middle-income countries with high rates of HIV.

Vinny Smith, co-author of the paper and Chief Executive of Meningitis Research Foundation (MRF) said, “Vaccinating the groups of people who are at the highest risk of meningitis and septicaemia will help us to defeat meningitis. We welcome the GMI’s recommendation to vaccinate people living with HIV to help save lives. Prevention of meningitis and septicaemia through vaccination is the best way to defeat the disease around the world. It is also vital that high-risk groups are particularly aware of symptoms so they can act quickly and get medical help as soon as meningococcal disease is suspected.”

Chris Head, President of the Confederation of Meningitis Organisations (CoMO) commented, “All our members want to see protection against all forms of meningococcal disease made as widely available as possible, and this is an important recommendation which will help to save lives.”

Another recommendation considered by the GMI related to vaccinating people attending planned mass gathering events. This was considered following MD outbreaks related to the World Scout Jamboree in Japan in 2015 and the World Youth Day Catholic Gathering in Poland in 2016. However, further work is needed to characterise the aspects of mass gatherings that pose significant risks for transmission of MD.

This is a press release from the Meningitis Research Foundation.  For more information on Meningitis, visit the Meningitis Research Foundation or you can visit them on social media (Twitter   |   Facebook   |   YouTube)

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Jonathan Grimshaw: ‘I tested HIV positive in 1984’

Jonathan Grimshaw was one of the first men to be infected by HIV in Britain. Here, he talks about survival and the illness that has become his life’s work

By the beginning of 1987, Jonathan Grimshaw had established himself as the UK’s most visible HIV-positive man. He looked striking: he was 32, bald and he often wore a bow-tie. He spoke eloquently about a terrible disease, something he’d been diagnosed with soon after the tests became available in February 1984. With no specific treatments, his prognosis was not good, but he believed his best chances of survival lay within the realms of activism, honesty and education. So he wasn’t at all surprised one day to be seated on a sofa for an explicit live television programme with Claire Rayner.

Story via The Guardian (2011)

It was National Aids Week, the first of its kind, and all the channels had given up airtime to support the government’s unprecedented public health campaign. Everywhere one looked, there was a nervous health minister explaining that we were all at risk and how best to protect ourselves. In the ad breaks, there were images of icebergs and tombstones and the voice of John Hurt imploring us not to die of ignorance. And as the country sat down to dinner, it was greeted with the sight of an agony aunt with a condom in one hand and something else in the other.

“She had been sent a very peculiarly shaped wooden phallus by a fan,” Grimshaw recalls, “and she was trying to get this condom on to this very fat phallus. First take, she couldn’t get it on. KY all over the place. She had this blouse which she was getting black marks on because of the KY. Second take, she couldn’t get it on. Third take, she finally forced the condom down on this wooden monstrosity.”

Claire Rayner, alas, is no longer with us. And nor are almost all of Jonathan Grimshaw’s friends from that time. But at the age of 56, Grimshaw is still in fairly good health, one of this country’s longest-surviving, HIV-positive men. After a period of retirement, he is once again engaged with HIV work and, as we approach the 30th anniversary of the first Aids case in the UK, he finds himself reflecting with a mixture of sadness and wonderment.

“It’s so horrific looking back. I don’t look back very often. It’s hard to conceive that it was actually all happening – you’d get phonecalls to say, ‘So and so is ill’, and it wasn’t that they were ill – they were dying. And you would see them dying. Over the course of a couple of years, you would see them wasting away, you’d go to see them in hospital and you’d go to their funerals. And it was one after another. I don’t know how we did it. Most of the people I knew, most of my friends, died. I was talking to another friend of mine recently who’s also got HIV, and who’s also one of us long-term survivors, and he said that although we’re well and there are treatments, there isn’t a single day that goes by without you having been affected by it.” Grimshaw laughs, as he often does, as a release. He adds: “That’s all I can say about it really.”

But of course there is more. Grimshaw lives with his long-term partner in an elegant, 18th-century, beamed house in Tunbridge Wells. He says that he first became fully aware of HIV the same way many of us did – by watching a 1983 BBC Horizon programme about the epidemic in New York. He had lived in New York a few years before and not long after his return to London he began to see stories about a mystery illness in the newspaper Capital Gay. “But I didn’t know anyone personally affected by it. It seemed to be in America, remote, and it didn’t seem like anything that was going to affect me very much.”

It became more personal in 1983. “An ex-partner of mine called me up and told me that somebody who we’d both slept with at some time in the past had got this new disease. And the doctor who was treating him had suggested that all of his sexual partners should attend the clinic just to be monitored. At that time, the cause wasn’t known, but it was thought there was a sexual transmission element.”

He attended the St Stephen’s clinic, which became part of the Chelsea and Westminster Hospital. He seemed to be fine, but was asked to come back every three months.

“So I kept going back. Then on one visit later they said they had tested my blood for this new virus which was thought to be the cause of Aids and the test had come back positive. I think I was one of the first people to be tested in the country. You just think, ‘Oh Jesus, I’m going to die. I’ve got this disease, and if I have intimate sex with somebody I can kill them.’ You can’t really take in much more than that. The doctor was saying, ‘Will you be able to cope?’ and I was saying, ‘Of course I’ll be able to cope’, and then I left the clinic reeling.

“I didn’t have a partner at the time. I told my parents and I said I wanted to go home for a few days to see them and talk about things. I was in a pretty bad way emotionally. But they didn’t want me to go home. I had a younger brother who I think at the time was 13 and they just didn’t know if there might be some kind of risk to him from my going home. It was terrible. On one hand, I could understand what they were saying and even sympathise with it. On the other, I was dreadfully upset. It really felt like a rejection. I told a very helpful nurse at the clinic what had happened and he said, ‘Do you want me to talk to them?’

“My parents lived in the north-east, so they came down, and this nurse took them through the risks and how it could be transmitted and not transmitted, and for them being able to hear this with a medical hat on reassured them. So after that I was able to go home.”

Grimshaw learned that the Terrence Higgins Trust was about to set up a support group for people who were infected but evidently healthy. “I made sure I was in it – I really was not coping at all well. Drinking quite a lot and completely not knowing what I was going to do.”

There was no treatment against the virus, and no known prognosis, but there was much prejudice. “Because there wasn’t a scientific explanation,” Grimshaw recalls, “all those very ancient theories about what causes disease came up – the idea that disease is some kind of punishment. Those are very difficult things to dislodge.”

The first support group was only intended to last for six weeks, but Grimshaw recognised a need to extend this and co-founded the organisation Body Positive in 1985. This provided a telephone helpline, counselling and hospital visits and spread out from London to 43 local groups.

It was around this time that Grimshaw became the acceptable public face of HIV. “I suppose I felt at that point that people had to take me as I am. It became obvious to me that the way the stigma was partly going to have to be dealt with was that the public needed to see people – as I thought, fairly normal people – on television talking about it, about how if affected them as a human being. I also felt I had nothing to lose – I was probably going to die. There were a few periods when I was on television a lot and I remember I would be careful not to stand at the edge of the tube platform. There were stories about people with Aids being attacked and things could be quite violent.”

Grimshaw looked after himself as best he could. He joined a gym; he ate well. And then there was his work, the sense of fighting the virus by doing something. “Psychologically, that was hugely important to me. I remember a few people who got very involved in the activism used to say, ‘This is the best thing that has happened to me – I’m doing something with my life now that’s really important and worthwhile, and if HIV hadn’t happened I would never have done anything like this.'” (Before his new mission, Grimshaw worked as a television production manager; his last project before diagnosis was a six-part series for Channel 4 called Survive.)

Grimshaw’s work expanded from Body Positive to include consultative and educational roles at many Aids organisations. He also sat on the first committee responsible for planning the Conservative government’s public health campaigns, advising ministers on the most effective language to persuade gay men to protect themselves. He remembers fearing a backlash “if suddenly the public was being told what gay men did in bed”.

His counselling work culminated in the establishment in 1989 of the Landmark, a day centre in south London. It was opened by Princess Diana; a year later, Grimshaw was awarded an MBE, the first such honour for someone in the HIV sector. Looking back, he flippantly suggests he may have had “a kind of Aids activist compulsion disorder”. Regarding his public visibility he says: “I may have been a bit overexposed. I was told at one point that people were calling helplines asking if HIV made you lose your hair.” In fact, his baldness is due to alopecia (“like Matt Lucas”).

During this period, his blood was monitored every three months. For more than a decade, his T-helper cells, the standard gauge of a responsive immune system, remained high. Grimshaw was fortunate to be a slow progressor.

Fifteen years ago, things slowly changed. His T-cell count began to decline and he found he was continually exhausted. He retired from the Landmark in the mid-90s (the centre now caters for people with learning disabilities), and moved to Brighton, where he bought himself a flat and tried not to be too pessimistic. “If you looked at the downward slope on the graph it wouldn’t be too many years before it hit bottom and I’d be done for. The advice at the time was, ‘Cash in your pension, have a good time with the years that you’ve got left.’ So that’s what I did. I thought that was it.”

But then the drugs took effect. The new treatments, known as protease inhibitors, worked particularly well when taken in a carefully balanced combination, and Grimshaw has had to modify his particular cocktail a few times to combat resistance. Although bouts of breathlessness require him consciously to conserve his energy, he remains largely well. He is a little hard of hearing, but he attributes this to standing too close to nightclub loudspeakers.

Five years ago, he decided to stop the Aids work completely. But last year he came across a study by the Terrence Higgins Trust into the lives of people over 50 with HIV. “There were echoes of how things used to be and it got me very annoyed again. It’s been found that people with HIV are experiencing diseases of ageing, like heart disease or liver disease or kidney disease 10 to 15 years earlier than the general population. A lot of them are quite likely to be poor, because they’ve cashed in their pensions, they haven’t worked for a long time. And there are still problems even in the NHS of people experiencing stigma and discrimination.” Grimshaw volunteered again to work on strategy.

As of June 2010, there have been 26,262 diagnoses of Aids in the UK and there are about 90,000 people living with HIV. I ask Grimshaw how many people from the original Body Positive support group were still around.

“I think they’re all dead. Four definitely are and the fifth I lost touch with. I think I would have heard if he was still alive.”

I wonder whether he ever asks himself: “Why me?”

“Not really. I don’t think my survival is a result of anything I’ve done or not done. I think it’s just a particular make-up of my immune system. I am extraordinarily lucky.”

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