Though it was high time I shared some more on here.
It has been overwhelming the support from people since starting this a the beginning of the year. A working team of people.
What is clear is that there is a need for you & I, as service users or patients, to have a voice. So much is spent and done in our name. The services that are available, how we are treated by the state etc.
I had some preconceptions before I started this about the HIV service & Health sector. I would like to say that these were in the main wrong. Alas no. I am quite worried about the level of politics that seems to be about especially in HIV service provision.
What's good is that other's are seeing the benefit of bringing ordinary HIV+ people more into the process for service delivery. How that materializes with those groups remains to be seen.
For me this has always been about supporting & sharing information. Allowing those who can not speak up to channel their point of view through the websites or through me, via email.
Tcell the idea. Is to grow a network of groups run by and for the interests of HIV+ people across the UK. Volunteer led to work in local communities to provide a local voice. To bring all those groups together to speak with one loud voice when needed on national issues. Groups who answer to there local communites and no other organisation (i.e. NHS or HIV service provider etc.) To hold those who provide us with what we need to account. Where necessary to campaign for change.
We aim never to be relant on funding or support that diminishes our independance and freedom to speak up.
If you are interested in trying to start a local group elsewhere in the UK and need advice & support and want to join the Tcell team. Feel free to email at john@tcell.org.uk .
I am, just like many. Someone who is new to this. I have never been involved in the HIV sector like this before. I have learnt much and am happy to share and support where possible.
Empowering our community is key. Helping people to stand up and be happy to be identified as HIV and having a supportive community. I am always guided by the need to overcome the stigmatism of having HIV.
Sometimes I cannot help but feel that existing services supposed to be "for us" talk of "support" but don't necessarily "walk the walk". I feel that those that are happy to say they help us actually encourage us to remain dependent "institutionalized, without the walls". It aids them in their agenda and of course funding, because we are kept down and our voice silenced.
So the question. What do you want from a HIV service provider? What do we want from our Doctors? Lets get the debate started. Stop being told what we need, and ask for what we believe we need.
Thanks as always for your comments.
John.
Friday, 18 April 2008
Tuesday, 18 March 2008
Study finds mini-epidemics of HIV
You may find this of interest.
From the BBC News website,Study finds mini-epidemics of HIV
"Study finds mini-epidemics of HIV
HIV is spreading among gay men in mini-epidemics, a study has found.
Data collected from more than 2,000 infected men showed there were distinct clusters or "bursts" of the disease.
Researchers now believe targeted local campaigns in bars and nightclubs could be the most effective way of curbing the spread of HIV by sexual contact.
The Edinburgh University study was carried out with Chelsea and Westminster Hospital in London, using data collected between 1997 and 2003.
It found many men who became infected with the virus passed it on within a few months, often before they themselves had been diagnosed as HIV positive.
'Drug-resistant'
Prof Andrew Leigh Brown, of Edinburgh University's school of biological sciences, said: "By studying changes in the virus over time, we have been able to pinpoint its progress in stages through the groups of men affected, which until now has not been done effectively.
"What we have discovered is that some of the spread occurred in bursts, with groups of people becoming infected within a short period of time."
Prof Leigh Brown said such a pattern had been seen occasionally among HIV-infected drug users but had not been identified in sexual transmission until now.
"The tightness of clusters that we have found is frightening. The results raise concerns that a drug-resistant version of the virus could spread quickly, causing a mini-epidemic which is hard to treat."
The findings indicate that the safe sex message was not having a significant impact according to researchers.
The study is suggesting that specific bars and nightclubs could be targeted to get the message across.
"It is important that information on the virus is available to gay men in the local areas where they are known to meet, to try to arrest the spread of HIV and Aids," he added.
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/scotland/edinburgh_and_east/7302474.stm
Published: 2008/03/18 13:08:50 GMT
© BBC MMVIII"
From the BBC News website,Study finds mini-epidemics of HIV
"Study finds mini-epidemics of HIV
HIV is spreading among gay men in mini-epidemics, a study has found.
Data collected from more than 2,000 infected men showed there were distinct clusters or "bursts" of the disease.
Researchers now believe targeted local campaigns in bars and nightclubs could be the most effective way of curbing the spread of HIV by sexual contact.
The Edinburgh University study was carried out with Chelsea and Westminster Hospital in London, using data collected between 1997 and 2003.
It found many men who became infected with the virus passed it on within a few months, often before they themselves had been diagnosed as HIV positive.
'Drug-resistant'
Prof Andrew Leigh Brown, of Edinburgh University's school of biological sciences, said: "By studying changes in the virus over time, we have been able to pinpoint its progress in stages through the groups of men affected, which until now has not been done effectively.
"What we have discovered is that some of the spread occurred in bursts, with groups of people becoming infected within a short period of time."
Prof Leigh Brown said such a pattern had been seen occasionally among HIV-infected drug users but had not been identified in sexual transmission until now.
"The tightness of clusters that we have found is frightening. The results raise concerns that a drug-resistant version of the virus could spread quickly, causing a mini-epidemic which is hard to treat."
The findings indicate that the safe sex message was not having a significant impact according to researchers.
The study is suggesting that specific bars and nightclubs could be targeted to get the message across.
"It is important that information on the virus is available to gay men in the local areas where they are known to meet, to try to arrest the spread of HIV and Aids," he added.
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/scotland/edinburgh_and_east/7302474.stm
Published: 2008/03/18 13:08:50 GMT
© BBC MMVIII"
Saturday, 15 March 2008
Work ...
I wanted to add this for the benefit of those who may encounter this site to get an impression of what it is like for some. This is my personal view. I would like to hear, please comment, on yours. Your experience & view will be different. For balance I welcome more positive comments.
Some have reported that they feel like they are being labelled "scroungers" with respect to claiming benefit.
Most of us, me included, worked. We had to give up for many reasons. In the early days it was the fatality of the illness. Latterly, it can be illness progression leading to being physically & mentally unfit for any work. Years of living with HIV, the stresses of day to day life & trying to maintain a career. Pressure from employers for you to leave your job, prejudice or the time you have to take off to attend to your health etc. Or a combination.
Some of us were professionals. Had a career path. Paid well and paid higher rate taxes. Myself included. Having to give up work for medical reasons wasn't a choice. Clearly your standard of living is affected. Of those I have spoken to. They would have liked to pursue there careers for the "well being" it gave them and the high standard of living it afforded them.
Having no choice but to claim benefits is an income cut for many.
Now with many out of their respective professions for some time. All other barriers to one side. Many feel "they have fallen behind". They would have to start again from the begining. With the added issues of health & in some cases age. Ruling this out.
Professional or othewise. Most worked and would love to be able to work for these reasons.
Though the general PR over HIV is that the drugs make for a "normal life". This doesn't consider the side effects and toll taken by some of us. On our health through taking earlier drugs.
Resistance to one drug can also rule out the options of several drugs that people are able to take in the future.
So some have breaks in treatment forced upon them for health reasons. This allowing the virus to re-take its hold & cause harm.
Also these drugs are not without there own side effects. Many can bring more difficulties and in turn more medication to alieviate medication.
You also have to take some medications at certain times. The right number of hours apart. Sometimes with food. Taking you medication at work can be difficult. People may ask questions. You also may have to change meetings etc. to ensure adherence to your therapy. The Disability Discrimination Act does cover making "suitable adjustments". However this relies on you telling your employer about your illness. With all the issues that brings over disclosure.
Insisting on your rights can be taken as adversarial. Having a negative impact on the employee/employer relationship.
Most of us don't like to ask for these concessions. Being seen as being treated more favorablly than our workmates raises questions as to "why?". If your privacy is being observed by your employer the lack of an answer can cause resentment amongst your peers. "We cannot have a meeting at this time because x is busy". When this happens with frequency the question is asked "why is x always busy at this time?" x is usually at their desk. They may not notice you have nipped to a private place for 10 minutes to take your medication.
Some employers are good and are willing to help & understand. Every day more efforts are taken to improve this understanding. However in my view their is still so much work to be done in this area.
In an ideal world. Being HIV+ and the efforts that need to be taken to control it. Would not be a problem in the workplace. However, aside from being unfit for work to begin with. You can see that there are also many hidden hurdles. If you were in fact able to work in the first place.
Some have reported that they feel like they are being labelled "scroungers" with respect to claiming benefit.
Most of us, me included, worked. We had to give up for many reasons. In the early days it was the fatality of the illness. Latterly, it can be illness progression leading to being physically & mentally unfit for any work. Years of living with HIV, the stresses of day to day life & trying to maintain a career. Pressure from employers for you to leave your job, prejudice or the time you have to take off to attend to your health etc. Or a combination.
Some of us were professionals. Had a career path. Paid well and paid higher rate taxes. Myself included. Having to give up work for medical reasons wasn't a choice. Clearly your standard of living is affected. Of those I have spoken to. They would have liked to pursue there careers for the "well being" it gave them and the high standard of living it afforded them.
Having no choice but to claim benefits is an income cut for many.
Now with many out of their respective professions for some time. All other barriers to one side. Many feel "they have fallen behind". They would have to start again from the begining. With the added issues of health & in some cases age. Ruling this out.
Professional or othewise. Most worked and would love to be able to work for these reasons.
Though the general PR over HIV is that the drugs make for a "normal life". This doesn't consider the side effects and toll taken by some of us. On our health through taking earlier drugs.
Resistance to one drug can also rule out the options of several drugs that people are able to take in the future.
So some have breaks in treatment forced upon them for health reasons. This allowing the virus to re-take its hold & cause harm.
Also these drugs are not without there own side effects. Many can bring more difficulties and in turn more medication to alieviate medication.
You also have to take some medications at certain times. The right number of hours apart. Sometimes with food. Taking you medication at work can be difficult. People may ask questions. You also may have to change meetings etc. to ensure adherence to your therapy. The Disability Discrimination Act does cover making "suitable adjustments". However this relies on you telling your employer about your illness. With all the issues that brings over disclosure.
Insisting on your rights can be taken as adversarial. Having a negative impact on the employee/employer relationship.
Most of us don't like to ask for these concessions. Being seen as being treated more favorablly than our workmates raises questions as to "why?". If your privacy is being observed by your employer the lack of an answer can cause resentment amongst your peers. "We cannot have a meeting at this time because x is busy". When this happens with frequency the question is asked "why is x always busy at this time?" x is usually at their desk. They may not notice you have nipped to a private place for 10 minutes to take your medication.
Some employers are good and are willing to help & understand. Every day more efforts are taken to improve this understanding. However in my view their is still so much work to be done in this area.
In an ideal world. Being HIV+ and the efforts that need to be taken to control it. Would not be a problem in the workplace. However, aside from being unfit for work to begin with. You can see that there are also many hidden hurdles. If you were in fact able to work in the first place.
Friday, 14 March 2008
Friday 14th March ...
Been a good week all and all. Some progress. The Budget added some idea of what the EAS will be like.
I have heard some heart felt stories. Not all are posted as people want to remain private. Which I fully understand & respect.
There seems again to be no clear picture yet as to how the review is going. Or how DLA is being awarded at the moment. It seems very "pot luck".
Being public has brought some negative and personal criticism. However I hope that in the fullness of time those that are cynical will understand that my actions are based on trying to do something positive. For me, yes , but by sharing, for others. A channel for my own frustrations & worries.
Constructive criticism is always welcome.
Thanks to YOU for your continued good will. I really appreciate it.
So have a good weekend. Try and put your worries to one side & enjoy.
John.
I have heard some heart felt stories. Not all are posted as people want to remain private. Which I fully understand & respect.
There seems again to be no clear picture yet as to how the review is going. Or how DLA is being awarded at the moment. It seems very "pot luck".
Being public has brought some negative and personal criticism. However I hope that in the fullness of time those that are cynical will understand that my actions are based on trying to do something positive. For me, yes , but by sharing, for others. A channel for my own frustrations & worries.
Constructive criticism is always welcome.
Thanks to YOU for your continued good will. I really appreciate it.
So have a good weekend. Try and put your worries to one side & enjoy.
John.
Monday, 10 March 2008
Why I decided to use the internet...
The internet is a great tool to exploit for us.
- It reaches a wide audience.
- It allows me to contribute when I can. Around the life & medical conditions I deal with on a day-to-day basis.
- It allows you to contribute for the same reasons.
- It supplements the print media availible.
- It is national & global.
- I can do it from the safety of home.
Saturday, 8 March 2008
Tcell.
The issues on DLA has met my personal goal with regard to the "why" I started the blog.
It was to inspire and empower my HIV+ peers. It was to come together as a community to create a unifed independent voice. Raising issues that we all face. Holding those that need to be, to account. Constructive in nature. To set the foundation of a "movement" that passes on to the next generation. To create a "safe environment" for the quieter voices to channel their views.
This has been a rollercoaster ride.
There is now a core group of us. Doing our best to push our common agenda forward.
You must participate and not allow it to just be us and our voices here. It may take time to develop in you - trust in us. Time for you to feel comfortable to contribute more directly. This is always going to be an aim and will just take time.
If you don't use us, I am worried that, as with organisations of this type in the past. You might loose us. I would hate for that to happen.
However it is early days yet, so don't worry unduly.
As a group we have decided to call ourselves Tcell as in T-Cell. I like the orgainic implications of this name. As our group with grow organically. "You need to plant a seed and feed it, in order to grow the tree." I like the fact it is heavily related to HIV, it is a common term we may all be familiar with. I like the fact that T helper Cells encompass what we are trying to achive. To provide, as best we can. The information to empower and help us take more control over our HIV.
I like the fact it is catchy and easy to remember.
To that end over the next few weeks & months we will develop a website http://www.tcell.org.uk.
I will post more to the main blog as it arises.
hivbenefits.co.uk will be our first campaign.
The group will take time to grow. We as a team are mindful not to be distracted unduly from the main campaign at the moment.
I am really grateful that those in the team have given there time & support to grow something for us all in the longer term.
The kindness, skill support, offered, time given freely and passion has been pleasantly overwhelming.
Of course. YOU. Reading this have had the most affect on my life this year. You have taken it down a path I never imagined. What energies I have left, that my HIV affords. Have a very worthwhile direction. I have grown personally so much and still continue to to do. Thank you.
Thank you for passing the word around. It may seem a little thing to so. But believe me it is the best way to contribute.
Thank you for sharing your experiences. This helps us gain a clearer picture. It starts to break down the barriers and demonstrates the stirring of empowerment at the grass roots level. Which is encouraging and leads by example.
This blog is personal. I make no apology for repeating this common theme.
One person can make a difference. I am a lay person like you. We are as a community standing up now and being counted. If this inspires just one person take that courageous first, difficult step, to being more open about their HIV. Personally I have achieved my goal. I want to support you.
I very much would like to hear your experiences on this front.
It was to inspire and empower my HIV+ peers. It was to come together as a community to create a unifed independent voice. Raising issues that we all face. Holding those that need to be, to account. Constructive in nature. To set the foundation of a "movement" that passes on to the next generation. To create a "safe environment" for the quieter voices to channel their views.
This has been a rollercoaster ride.
There is now a core group of us. Doing our best to push our common agenda forward.
You must participate and not allow it to just be us and our voices here. It may take time to develop in you - trust in us. Time for you to feel comfortable to contribute more directly. This is always going to be an aim and will just take time.
If you don't use us, I am worried that, as with organisations of this type in the past. You might loose us. I would hate for that to happen.
However it is early days yet, so don't worry unduly.
As a group we have decided to call ourselves Tcell as in T-Cell. I like the orgainic implications of this name. As our group with grow organically. "You need to plant a seed and feed it, in order to grow the tree." I like the fact it is heavily related to HIV, it is a common term we may all be familiar with. I like the fact that T helper Cells encompass what we are trying to achive. To provide, as best we can. The information to empower and help us take more control over our HIV.
I like the fact it is catchy and easy to remember.
To that end over the next few weeks & months we will develop a website http://www.tcell.org.uk.
I will post more to the main blog as it arises.
hivbenefits.co.uk will be our first campaign.
The group will take time to grow. We as a team are mindful not to be distracted unduly from the main campaign at the moment.
I am really grateful that those in the team have given there time & support to grow something for us all in the longer term.
The kindness, skill support, offered, time given freely and passion has been pleasantly overwhelming.
Of course. YOU. Reading this have had the most affect on my life this year. You have taken it down a path I never imagined. What energies I have left, that my HIV affords. Have a very worthwhile direction. I have grown personally so much and still continue to to do. Thank you.
Thank you for passing the word around. It may seem a little thing to so. But believe me it is the best way to contribute.
Thank you for sharing your experiences. This helps us gain a clearer picture. It starts to break down the barriers and demonstrates the stirring of empowerment at the grass roots level. Which is encouraging and leads by example.
This blog is personal. I make no apology for repeating this common theme.
One person can make a difference. I am a lay person like you. We are as a community standing up now and being counted. If this inspires just one person take that courageous first, difficult step, to being more open about their HIV. Personally I have achieved my goal. I want to support you.
I very much would like to hear your experiences on this front.
Friday, 7 March 2008
Sorry for the specific GAY community take on this but ..
From the HammersmithToday.co.uk website
"Hammersmith & Fulham Police are investigating a number of criminal offences and are appealing for information to help trace a man.
Inquiries are underway into a series of thefts and frauds within the borough and Central London.
The suspect has frequented various gay bars and stolen various items of property from people he has befriended - including credit cards, which are then used fraudulently.
Officers would like the public’s assistance in helping to trace Ivan Stefancik in connection with this inquiry.
If anyone can assist with the current whereabouts of this person, they are asked to contact PC Chesters based in the Beat Crimes Unit at Fulham Police Station on 0208 246 2982.
If you wish to remain anonymous please call Crimestoppers on 0800 555 111."
There is a picture of the gentleman on this story.
I put this here in the spirit that awareness will hopefully lead to members of the gay community not being taken in & he will be caught.
To those who are not gay & not in London. I hope you will not mind the inclusion of this entry.
"Hammersmith & Fulham Police are investigating a number of criminal offences and are appealing for information to help trace a man.
Inquiries are underway into a series of thefts and frauds within the borough and Central London.
The suspect has frequented various gay bars and stolen various items of property from people he has befriended - including credit cards, which are then used fraudulently.
Officers would like the public’s assistance in helping to trace Ivan Stefancik in connection with this inquiry.
If anyone can assist with the current whereabouts of this person, they are asked to contact PC Chesters based in the Beat Crimes Unit at Fulham Police Station on 0208 246 2982.
If you wish to remain anonymous please call Crimestoppers on 0800 555 111."
There is a picture of the gentleman on this story.
I put this here in the spirit that awareness will hopefully lead to members of the gay community not being taken in & he will be caught.
To those who are not gay & not in London. I hope you will not mind the inclusion of this entry.
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