A few weeks ago, under the Auspices of the Data Protection Act. We requested that the Department for Works & Pensions (DWP) provide us with all clerical & computer records held on us in relation to Disability Living Allowance (DLA)
We received a response today.
They will "issue the records" as soon as possible and within 40 days of our request.
They have made no charge for this thus far.
Thursday, 6 March 2008
Wednesday, 5 March 2008
If some one cares for you ...
If you have someone that cares for you or you care for someone.
You may find the Archive of the web chat with Anne McGuire , Minister for the Disabled, interesting.
During the usual course of research this cropped up so though I would "throw it out" if your interested.
You may find the Archive of the web chat with Anne McGuire , Minister for the Disabled, interesting.
During the usual course of research this cropped up so though I would "throw it out" if your interested.
Supporting our cause ....
Thank you to the following who are lending there support to raise the awareness of our issue. In pursuit of drawing attention to the impact this review means for us all.
Kate Williams.
Actress - Widows, She's Out, EastEnders. .
Che Walker.
Writer & Director .
Race Davis.
Actress - Roughnecks , EastEnders, Men Behaving Badly .
Daniel Kramer.
Director - Stage production of Angels in America .
I only post names of "famous faces" where the member of our team who has access to this network confirms the identity of the name. Thanks Jim.
If you are a famous name supporting this campaign via the DLA RRP Petition on the 10 Downing Street Web site. And we have not thanked you directly or given you mention.
Please drop an email to me (john@hivbenefits.co.uk) to confirm your identity and consent to allowing us to draw attention to your valuable support on this blog.
Of course, we thank everyone. In which ever way they can contribute to this campaign. For there valuable support.
Kate Williams.
Actress - Widows, She's Out, EastEnders. .
Che Walker.
Writer & Director .
Race Davis.
Actress - Roughnecks , EastEnders, Men Behaving Badly .
Daniel Kramer.
Director - Stage production of Angels in America .
I only post names of "famous faces" where the member of our team who has access to this network confirms the identity of the name. Thanks Jim.
If you are a famous name supporting this campaign via the DLA RRP Petition on the 10 Downing Street Web site. And we have not thanked you directly or given you mention.
Please drop an email to me (john@hivbenefits.co.uk) to confirm your identity and consent to allowing us to draw attention to your valuable support on this blog.
Of course, we thank everyone. In which ever way they can contribute to this campaign. For there valuable support.
Tuesday, 4 March 2008
KVN Forum meeting this evening.
The KVN Forum.
This entry concerns patients accessing the HIV services the Chelsea & Westminster Hospital. Namely - Kobler Centre, Victoria & Nkosi Johnson Clinics.
However I post it for general consumption under the auspices of sharing experience.
It was good to see so many at a meeting given over to the DLA issues for patients of these clinics.
Many questions were raised. Of course they encapsulate certain key themes, whats happening?, how do I get help with my form? What will I do if my income falls? etc .... Of course many are anxious & scared.
Some, including myself, tried to give the group the benefit of what we had learned. It is important to note that we and I are in the same boat as everyone. I am not lawyer or a welfare rights worker and cannot tell you or help you to fill in the forms you recieve. All we can do, using the tools at our disposal - Patient Forum groups, Internet, Media etc .., is to share our collective experience to further understand the "picture" here and make the "powers that be" aware.
Existing services are thin on the ground and over stretched. Not everyone is going to be able to get direct help. Whilst this needs to be addressed it must not distract from the core process of providing the information.
In many cases I am afraid. It maybe a case of having to "get off your arse" and do the work yourself. Use this site and others to get the information and research the answers to your questions.
That is the honest truth of it unfortunately.
Engage with your HIV services, take part and raise this at your treatment center's & it's Patient forum. Use these forums and this site to share your experience so we can all learn.
If you need more time. Ring the DWP and ask.
SPEAK to your HIV Consultant when you get the DBD551 form.
Personally I would like to have the time to help people on an individual basis. However that stops me being able to undertake the research that is of general use to us all. Of course I am ill myself & do have a family life. So if you have come up to me at a meeting and I have been unable to give you time or the help you seek. Please don't feel offended. Really the best way you can help is to contribute to the wider agenda use this portal thats whats it here for.
I understand the the forum is pushing back it agenda for the year. To facilitate further meetings on this issue.
It was apparent that many do not have internet access. Positive Nation should go some way to covering that audience.
As mentioned. A meeting is taking place tomorrow for the Kensington & Chelsea HIV Service Users Forum from 6pm to 8pm. The venue is The River House, Rutland Grove, Hammersmith, London W6 9FE.
This entry concerns patients accessing the HIV services the Chelsea & Westminster Hospital. Namely - Kobler Centre, Victoria & Nkosi Johnson Clinics.
However I post it for general consumption under the auspices of sharing experience.
It was good to see so many at a meeting given over to the DLA issues for patients of these clinics.
Many questions were raised. Of course they encapsulate certain key themes, whats happening?, how do I get help with my form? What will I do if my income falls? etc .... Of course many are anxious & scared.
Some, including myself, tried to give the group the benefit of what we had learned. It is important to note that we and I are in the same boat as everyone. I am not lawyer or a welfare rights worker and cannot tell you or help you to fill in the forms you recieve. All we can do, using the tools at our disposal - Patient Forum groups, Internet, Media etc .., is to share our collective experience to further understand the "picture" here and make the "powers that be" aware.
Existing services are thin on the ground and over stretched. Not everyone is going to be able to get direct help. Whilst this needs to be addressed it must not distract from the core process of providing the information.
In many cases I am afraid. It maybe a case of having to "get off your arse" and do the work yourself. Use this site and others to get the information and research the answers to your questions.
That is the honest truth of it unfortunately.
Engage with your HIV services, take part and raise this at your treatment center's & it's Patient forum. Use these forums and this site to share your experience so we can all learn.
If you need more time. Ring the DWP and ask.
SPEAK to your HIV Consultant when you get the DBD551 form.
Personally I would like to have the time to help people on an individual basis. However that stops me being able to undertake the research that is of general use to us all. Of course I am ill myself & do have a family life. So if you have come up to me at a meeting and I have been unable to give you time or the help you seek. Please don't feel offended. Really the best way you can help is to contribute to the wider agenda use this portal thats whats it here for.
I understand the the forum is pushing back it agenda for the year. To facilitate further meetings on this issue.
It was apparent that many do not have internet access. Positive Nation should go some way to covering that audience.
As mentioned. A meeting is taking place tomorrow for the Kensington & Chelsea HIV Service Users Forum from 6pm to 8pm. The venue is The River House, Rutland Grove, Hammersmith, London W6 9FE.
Website is live again.
The move was successful. The blog is hosted separately so if the main site is down this should still be live (and vice versa)
Any issues etc. As always email us and let us know.
Any issues etc. As always email us and let us know.
Problems with main website
We are aware that there maybe problems with the main web site. So far we have hosted it on the webspace provided by our ISP. This has a limitation as far as data traffic allowed.
To resolve this. We have taken up a web hosting package from a company we have used for many years. This will cost £7.99 per month for the time being. Of course technically this does bring additional benefits to us.
Please bear with us - we are undertaking this activity at present. I will post when the issue is resolved.
It is unfortunate than any activity such as this does have a financial impact. We will seek in the future to raise the necessary funds to cover these expenses. In a manner that maintains our independance at ALL times avoiding "conflicts of interest. Though I don't expect the funds needed to maintain our ongoing operation to be particularly high.
Please be assured we will keep full accounts. And when funds are available I will seek to recover these incidental running costs.
Though clearly our campaign is our No.1 priority at the moment.
I want our community to see that the team that leads this , and & any future campaign. Does so in an open, honest & transparent way. I hope this entry demonstrates this philosophy adequately.
To resolve this. We have taken up a web hosting package from a company we have used for many years. This will cost £7.99 per month for the time being. Of course technically this does bring additional benefits to us.
Please bear with us - we are undertaking this activity at present. I will post when the issue is resolved.
It is unfortunate than any activity such as this does have a financial impact. We will seek in the future to raise the necessary funds to cover these expenses. In a manner that maintains our independance at ALL times avoiding "conflicts of interest. Though I don't expect the funds needed to maintain our ongoing operation to be particularly high.
Please be assured we will keep full accounts. And when funds are available I will seek to recover these incidental running costs.
Though clearly our campaign is our No.1 priority at the moment.
I want our community to see that the team that leads this , and & any future campaign. Does so in an open, honest & transparent way. I hope this entry demonstrates this philosophy adequately.
A letter recieved today....
I have written to many people about our campaign for equity & fairness. Including government ministers.
Full details are found, at the moment, on the about us page on the main web. I keep this diary so you can see the work done by the team on our behalf.
Anne McGuire, Minister for the Disabled, has responded.
Albeit through a member of the DWP correspondence team as it is "not always possible for her to reply personally to everyone who writes to her". I will be uploading the response to the documents page on the web today.
To highlight some points
I note that they included my NI number on the response. Though I didn't give it in my initial letter. I assume they have pulled my file. It will be interesting to see what happens to my claim going forward.
Full details are found, at the moment, on the about us page on the main web. I keep this diary so you can see the work done by the team on our behalf.
Anne McGuire, Minister for the Disabled, has responded.
Albeit through a member of the DWP correspondence team as it is "not always possible for her to reply personally to everyone who writes to her". I will be uploading the response to the documents page on the web today.
To highlight some points
- Applies to claims awarded over three years ago under "Special Rules".
- Follows the recomendations of the DLAAB "Special Rules Study" after discussions with various groups representing disabled people. Terrence Higgins Trust in our case.
- It was agreed that the initial enquiry. To medical health personnel. Would be addressed to the HIV consultant.
- With only ONE medical report requested at the outset.
- The issues I raised with respect to the introduction of the Employment & Support Allowance warrant a separate reply ?????
I note that they included my NI number on the response. Though I didn't give it in my initial letter. I assume they have pulled my file. It will be interesting to see what happens to my claim going forward.
New experience ... thank you.
Thank you for this. I fully understand & respect your need for confidentiality.
"TO WHOM IT MAY CONCERN: (PLEASE KEEP E MAIL ADDRESS CONFIDENTIAL)
DISABILITY LIVING ALLOWANCE REVIEW FOR CHRONICALLY SICK:
I am currently undergoing a review of my Disability Living Allowance. I was diagnosed with AIDS in 1991 with Karposis Sarcoma skin Cancer, and had Tubercolosis in 1994 for which I had one year of treatment. I have been taking anti-retroviral medication since 1991 and suffer many side effects as a result of taking 21 pills per day; my quality of life is poor, the side effects I have to suffer and try to manage are numerous and very unpleasant and I am unable to work as a result.
I just about manage financially on my current benefits; i'm able to keep my heating on during the winter to keep warm, buy the food I need to maintain good health etc however, this DLA review is having a negative effect on me due to the anxiety and worry of having my money reduced or even stopped, and a fear of going into poverty. My mental and physical health is suffering, as if I didn't have enough to cope with already.
I am very concerned about the 'Decision Makers' at the DWP; how much do they know about HIV/AIDS? Are they medically qualified and knowledgeable enough to make such important decisions about people with my condition? I doubt it very much.
I am thankfully one of the very lucky people who has survived an AIDS diagnosis in the early 90s and owing to the excellent care and support I receive at my Hospital and my own great determination to maintain body weight and manage illness and pain, I am still living, but now feel that the 'rug is being pulled from under my feet'.
Shame on this so called 'Socialist' government for targeting those with chronic illnesses such as AIDS and Cancer, when there are thousands of healthy people in this country receiving benefits who are working illegally etc. I intend to write to my MP to make my feelings known, and I ask readers to sign this petition to give support to all of us at this difficult time, thanks.
http://petitions.pm.gov.uk/DLA-Review/ "
This was also submitted to Positive Nation. I hope they won't mind it appearing here. It does so at the authors request. Also those that do not have easy access to the magazine can keep in the loop.
You can subscribe & read back issues of the Positive Nation magazine online.
"TO WHOM IT MAY CONCERN: (PLEASE KEEP E MAIL ADDRESS CONFIDENTIAL)
DISABILITY LIVING ALLOWANCE REVIEW FOR CHRONICALLY SICK:
I am currently undergoing a review of my Disability Living Allowance. I was diagnosed with AIDS in 1991 with Karposis Sarcoma skin Cancer, and had Tubercolosis in 1994 for which I had one year of treatment. I have been taking anti-retroviral medication since 1991 and suffer many side effects as a result of taking 21 pills per day; my quality of life is poor, the side effects I have to suffer and try to manage are numerous and very unpleasant and I am unable to work as a result.
I just about manage financially on my current benefits; i'm able to keep my heating on during the winter to keep warm, buy the food I need to maintain good health etc however, this DLA review is having a negative effect on me due to the anxiety and worry of having my money reduced or even stopped, and a fear of going into poverty. My mental and physical health is suffering, as if I didn't have enough to cope with already.
I am very concerned about the 'Decision Makers' at the DWP; how much do they know about HIV/AIDS? Are they medically qualified and knowledgeable enough to make such important decisions about people with my condition? I doubt it very much.
I am thankfully one of the very lucky people who has survived an AIDS diagnosis in the early 90s and owing to the excellent care and support I receive at my Hospital and my own great determination to maintain body weight and manage illness and pain, I am still living, but now feel that the 'rug is being pulled from under my feet'.
Shame on this so called 'Socialist' government for targeting those with chronic illnesses such as AIDS and Cancer, when there are thousands of healthy people in this country receiving benefits who are working illegally etc. I intend to write to my MP to make my feelings known, and I ask readers to sign this petition to give support to all of us at this difficult time, thanks.
http://petitions.pm.gov.uk/DLA-Review/ "
This was also submitted to Positive Nation. I hope they won't mind it appearing here. It does so at the authors request. Also those that do not have easy access to the magazine can keep in the loop.
You can subscribe & read back issues of the Positive Nation magazine online.
Monday, 3 March 2008
Polls on this site...
It is useful, to collect some data from you. This data is collected anonymously and with regard to your confidentiality.
It helps guide our campaigning & gauge the impact within the community.
I think these three cover most bases and I will keep to just them. Please use them.
Note. Please keep all your paperwork
Thanks
It helps guide our campaigning & gauge the impact within the community.
I think these three cover most bases and I will keep to just them. Please use them.
Note. Please keep all your paperwork
Thanks
Thanks to ....
Jim, for his efforts regarding his media contacts. Some well known faces are now supporting all of us, regardless of disability. In the struggle we face with this review.
I have a forum on the Benefits & Work website - DLA review & the HIV+ Community. So far 634 hits.
I posted this,
"There is a 10 Downing Street petition on the RRP found at http://petitions.pm.gov.uk/DLA-Review/ .
Thanks to a member of our campaigning group we are starting to see some famous names lend their support to ALL of us who are going through the Disability Living Allowance review, regardless of our disability.
Some of us are more vocal than others than this. We don't mind. We know not everyone for whatever reason, most likely health, can contribute. You can feel isolated, scared & worried.
I hope this gives you some comfort that you do not face this alone.
At time of posting
Ann Mitchell
Widows / She's Out / recently, stag production of Angels in America and EastEnders
Hannah Waterman
New Tricks / EastEnders
You will find them at the bottom of the page.
Of course not only on behalf of http://www.hivbenefits.co.uk but our wider community I have passed our thanks on."
Thanks also to YOU. Word of mouth it one of our key tools here to get the powers that be to wake up to this.
I have a forum on the Benefits & Work website - DLA review & the HIV+ Community. So far 634 hits.
I posted this,
"There is a 10 Downing Street petition on the RRP found at http://petitions.pm.gov.uk/DLA-Review/ .
Thanks to a member of our campaigning group we are starting to see some famous names lend their support to ALL of us who are going through the Disability Living Allowance review, regardless of our disability.
Some of us are more vocal than others than this. We don't mind. We know not everyone for whatever reason, most likely health, can contribute. You can feel isolated, scared & worried.
I hope this gives you some comfort that you do not face this alone.
At time of posting
Ann Mitchell
Widows / She's Out / recently, stag production of Angels in America and EastEnders
Hannah Waterman
New Tricks / EastEnders
You will find them at the bottom of the page.
Of course not only on behalf of http://www.hivbenefits.co.uk but our wider community I have passed our thanks on."
Thanks also to YOU. Word of mouth it one of our key tools here to get the powers that be to wake up to this.
MP sample letter.
Some of you asked for a sample letter for your MP. I have put something up under Documents on the main site http://www.hivbenefits.co.uk..
This is very much a sample letter. Feel free to amend and edit as you see fit. If it inspires your own letter than great!
If you can put our case more succinctly I welcome your input.
This is very much a sample letter. Feel free to amend and edit as you see fit. If it inspires your own letter than great!
If you can put our case more succinctly I welcome your input.
Saturday, 1 March 2008
MAKE SURE YOU READ THIS ....
All,
Steve has now put together guidance on background to this review & the processes we can follow if we need to challange our reviews.
This is a page "Guidance - READ THIS" on the main website http://www.hivbenefits.co.uk . Clicking on any of the text here will open a new window to it for you.
ALSO HELP Positive Nation if you can as described in the post below this.
Steve has now put together guidance on background to this review & the processes we can follow if we need to challange our reviews.
This is a page "Guidance - READ THIS" on the main website http://www.hivbenefits.co.uk . Clicking on any of the text here will open a new window to it for you.
ALSO HELP Positive Nation if you can as described in the post below this.
Friday, 29 February 2008
Positive Nation needs your letters
OK, just got off the phone with Positive Nation. They are running a feature on the DLA reviews in the next edition which goes to press next week.
What they have asked for is letters from people affected by this - you don't have to identify yourself, they will change the name or publish suitable stuff anonymously.
Email how you feel or what's happened to you to editor@positivenation.co.uk
It looks like most people affected by this are older gay men living in London - is there anyone from outside London or who isn't a gay man that can add something to the debate.
Word is that many of people reviewed are having their DLA withdrawn totally, so make sure that you discuss this with your HIV specialist BEFORE they are asked to fill in the review questionnaire.
What they have asked for is letters from people affected by this - you don't have to identify yourself, they will change the name or publish suitable stuff anonymously.
Email how you feel or what's happened to you to editor@positivenation.co.uk
It looks like most people affected by this are older gay men living in London - is there anyone from outside London or who isn't a gay man that can add something to the debate.
Word is that many of people reviewed are having their DLA withdrawn totally, so make sure that you discuss this with your HIV specialist BEFORE they are asked to fill in the review questionnaire.
From Benefits & Work.
Given the nature of this I am sorry to drown the previous post so soon. Please make sure you read the post below this as it is good news.
If you need more info go to the Benefits & Work website.
I told the webmaster I wouldn't copy anything he authored. But this is important and I am sure he won't mind. You may also have received it if you are on the email list anyway. Go to the main B&W website for the detail.
Just recieved in the email :
"Will you challenge the benefits millionaire maker?
28.02.08
Dear Reader,
The number of calls and emails we're receiving from claimants who are terrified about what's going to happen to them is reaching unmanageable proportions. Every new government statement on incapacity benefits seems to push more people into a state of panic.
We believe it's time to challenge what is almost a campaign of incitement to hatred of incapacity benefit claimants currently being waged by both labour and the conservatives. We're starting with an attempt to have David 'Benefits' Freud - the benefits millionaire maker - investigated by the parliamentary ombudsman. But we're barred from making a complaint, so we really do need your help.
In addition, a warning that the Benefits and Work website will be offline for a few days in about a fortnight as we install our new look.
Plus, news that the first lie detectors have been installed in Jobcentre Plus offices, Atos Healthcare have taken over their first GPs surgery, drug users aren't really going to be forced to have treatment or lose benefits and new guidance has been issued to GPs providing DLA evidence.
Oh, and there's another article about 'Benefits' Freud.
Next month we plan to look at which voluntary sector agencies are colluding in the war of terror being waged against claimants and what can be done about them.
Meanwhile, there are still places available on our Employment and Support Allowance training day on April 3rd in Bristol."
If you need more info go to the Benefits & Work website.
I told the webmaster I wouldn't copy anything he authored. But this is important and I am sure he won't mind. You may also have received it if you are on the email list anyway. Go to the main B&W website for the detail.
Just recieved in the email :
"Will you challenge the benefits millionaire maker?
28.02.08
Dear Reader,
The number of calls and emails we're receiving from claimants who are terrified about what's going to happen to them is reaching unmanageable proportions. Every new government statement on incapacity benefits seems to push more people into a state of panic.
We believe it's time to challenge what is almost a campaign of incitement to hatred of incapacity benefit claimants currently being waged by both labour and the conservatives. We're starting with an attempt to have David 'Benefits' Freud - the benefits millionaire maker - investigated by the parliamentary ombudsman. But we're barred from making a complaint, so we really do need your help.
In addition, a warning that the Benefits and Work website will be offline for a few days in about a fortnight as we install our new look.
Plus, news that the first lie detectors have been installed in Jobcentre Plus offices, Atos Healthcare have taken over their first GPs surgery, drug users aren't really going to be forced to have treatment or lose benefits and new guidance has been issued to GPs providing DLA evidence.
Oh, and there's another article about 'Benefits' Freud.
Next month we plan to look at which voluntary sector agencies are colluding in the war of terror being waged against claimants and what can be done about them.
Meanwhile, there are still places available on our Employment and Support Allowance training day on April 3rd in Bristol."
Some good news for the weekend.
Click here for the initial posting on this earlier in the blog. The "close relative" has been re-awarded DLA at the "higher rate".
This is the second positive outcome I have heard about.
More info is on the way and I will post it when I get it.
I know that reading into this subject it can be quite depressing. We are all uncertain as to our outcomes. But this is good and hopeful news.
Maybe our coming together as a community is having some effect. Maybe we will never know.
Either way its a good start to the weekend !
This is the second positive outcome I have heard about.
More info is on the way and I will post it when I get it.
I know that reading into this subject it can be quite depressing. We are all uncertain as to our outcomes. But this is good and hopeful news.
Maybe our coming together as a community is having some effect. Maybe we will never know.
Either way its a good start to the weekend !
Information on AIDS/HIV on DWP.
I strongly recommend you read the detail on the DWP here.
Click here to navigate to the DWP Corporate Medical Group HIV/Aids information.
You may find this useful as to understanding how the DWP interpret with in the bands - Mild / Moderate / Severe Functional Restriction. Found in the Care and Mobility Considerations.
This table on "Most common disabling conditions" is also worth a look.
My partner is also going to add some downloadable charts to the document page. These are a flow charts showing the dependancies between the DLA & other benefits. There are two, one for under 50's one for over.
Click here to navigate to the DWP Corporate Medical Group HIV/Aids information.
You may find this useful as to understanding how the DWP interpret with in the bands - Mild / Moderate / Severe Functional Restriction. Found in the Care and Mobility Considerations.
This table on "Most common disabling conditions" is also worth a look.
My partner is also going to add some downloadable charts to the document page. These are a flow charts showing the dependancies between the DLA & other benefits. There are two, one for under 50's one for over.
I need the person who ...
Was at the meeting on Monday. Was sat a few rows behind me. Had a White T Shirt on.
He/You spoke about having to give up a highly paid job etc.
Can you get in touch with me please.
Thanks,
john@hivbenefits.co.uk
He/You spoke about having to give up a highly paid job etc.
Can you get in touch with me please.
Thanks,
john@hivbenefits.co.uk
Thursday, 28 February 2008
Disability and Carers Service Performance Standards 2007-08
Want to know the standard of service the DCS is working to in processing your claim.
Click here.
Click here.
Some thanks are due...
Thank you to
Peter of The Eddie Surman Trust. And the friend who facilitated the introduction.
I would ask you to take some time and navigate to the trust by clicking here. You can read Eddie's Letter by clicking here.
I declare an interest here I have donated to this charity in the past.
The Wharfside Patients Forum. Thank you all for allowing us to visit your meeting this evening. I found the meeting very interesting and learnt much. Always supportive and very much appreciated.
Peter of The Eddie Surman Trust. And the friend who facilitated the introduction.
I would ask you to take some time and navigate to the trust by clicking here. You can read Eddie's Letter by clicking here.
I declare an interest here I have donated to this charity in the past.
The Wharfside Patients Forum. Thank you all for allowing us to visit your meeting this evening. I found the meeting very interesting and learnt much. Always supportive and very much appreciated.
New page on website.
Partner has added another page where we will place key documents for download. He is currently working to get the documents to open in a browser. Though we believe this is not working properly because of the hosting we are presently using.
It should however download the documents to your machine for you to open.
The powerpoint presentation from the NAM/THT meeting is now there. It has been converted to pdf so many will be able to read it.
We use up to date antivirus software. That said. Please make sure your Mac/PC has current and up to date anti virus software also.
Files in the pdf format can be opened using the Preview application on an Apple Mac. If you have a Mac/PC you can get Adobe Reader (pdf reader) free from http://www.adobe.com
Though most recent machines will have this installed already.
It should however download the documents to your machine for you to open.
The powerpoint presentation from the NAM/THT meeting is now there. It has been converted to pdf so many will be able to read it.
We use up to date antivirus software. That said. Please make sure your Mac/PC has current and up to date anti virus software also.
Files in the pdf format can be opened using the Preview application on an Apple Mac. If you have a Mac/PC you can get Adobe Reader (pdf reader) free from http://www.adobe.com
Though most recent machines will have this installed already.
DWP Consultation.
The DWP have started a public consultation entitled :
Helping people achieve their full potential : Improving Specialist Disability Employment Services.
You might find this of interest and can submit your comments. Click the title to go to the consultation.
If you want to see what is new at the DWP Click here
Helping people achieve their full potential : Improving Specialist Disability Employment Services.
You might find this of interest and can submit your comments. Click the title to go to the consultation.
If you want to see what is new at the DWP Click here
Government announced today ...
If you want to keep abreast of issues affecting benefits. I would advise you to subscribe to the email list on the Benefits & Work website.
New measures being announced today about getting people back to work.
Minsters have been on BBC News 24 today.
Click here for story on BBC News website.
Here it is in text,
Private firms to find people work
Private firms and voluntary groups are to be offered cash incentives to get unemployed people into work for longer.
The changes will affect about 250,000 long-term unemployed people and all new claimants for sickness benefits.
Cabinet minister James Purnell said a "radical blueprint" was needed to get people into "sustainable" jobs.
Meanwhile an MPs' committee has found that 40% of jobseekers allowance claimants who find a job are out of work again within six months.
The public accounts committee concludes: "Despite high employment levels many people cycle between work and benefits."
Longer contracts
Work and Pensions Secretary Mr Purnell has announced a "commissioning strategy" that will see more private companies and voluntary groups involved in finding work for people on benefits - following a review by investment banker David Freud.
New contractors are expected to be offered incentives for getting people into work for at least six months, with further incentives planned in the future for increasing it to 18 months.
In return, they will get larger contracts which last up to seven years - twice as long as usual.
The public accounts committee report also criticised the fact the government had considered 13 weeks a "yardstick" for sustained employment, saying it was "too short".
Mr Purnell said there was a "big challenge" adding: "We have got really radical goals, getting one million off incapacity benefit, we need a radical blueprint to achieve it."
He told BBC 2's Newsnight: "We've had a big improvement in terms of getting the unemployment level down; now we need to get the inactivity level down."
He added: "We've had three million new jobs under this government. That is not a culture of dependency, that's a real success in terms of full employment."
'Economically rational'
Incapacity benefit costs the Treasury about £12bn a year. But the Department for Work and Pensions said recently the number of claimants was at its lowest since 2000.
Mr Freud has said that of the 2.7 million people claiming incapacity benefit, only 700,000 need it.
He estimates it would be "economically rational" to pay up to £62,000 to a company which placed an incapacity benefit claimant in a job for at least three years.
Of the government's latest plans, shadow work and pensions secretary Chris Grayling said the government was trying to "steal Conservative language on welfare reform".
"We've set out very clear and very detailed plans for welfare reform based on the experience in other countries, a very full package," he said.
"Gordon Brown is tinkering around the edges - a bit of reform here, a bit of participation by the private sector, a slight toughening of sanctions. Nothing like the scale of radical change we would need."
The Liberal Democrats have previously welcomed the use of the voluntary and private sector to help more people back into employment, but said it must be "properly financed, and include provisions to help those with serious problems such as low skills or mental health problems".
But unions have raised concerns that contracting out services will lead to job cuts and "lower standards and the exploitation of claimants".
DWP Press release click here.
I also found this interesting.
Check Nick Robinsons Blog on this also.
New measures being announced today about getting people back to work.
Minsters have been on BBC News 24 today.
Click here for story on BBC News website.
Here it is in text,
Private firms to find people work
Private firms and voluntary groups are to be offered cash incentives to get unemployed people into work for longer.
The changes will affect about 250,000 long-term unemployed people and all new claimants for sickness benefits.
Cabinet minister James Purnell said a "radical blueprint" was needed to get people into "sustainable" jobs.
Meanwhile an MPs' committee has found that 40% of jobseekers allowance claimants who find a job are out of work again within six months.
The public accounts committee concludes: "Despite high employment levels many people cycle between work and benefits."
Longer contracts
Work and Pensions Secretary Mr Purnell has announced a "commissioning strategy" that will see more private companies and voluntary groups involved in finding work for people on benefits - following a review by investment banker David Freud.
New contractors are expected to be offered incentives for getting people into work for at least six months, with further incentives planned in the future for increasing it to 18 months.
In return, they will get larger contracts which last up to seven years - twice as long as usual.
The public accounts committee report also criticised the fact the government had considered 13 weeks a "yardstick" for sustained employment, saying it was "too short".
Gordon Brown is tinkering around the edges - a bit of reform here, a bit of participation by the private sector, a slight toughening of sanctions
Chris Grayling
Conservatives
Chris Grayling
Conservatives
Mr Purnell said there was a "big challenge" adding: "We have got really radical goals, getting one million off incapacity benefit, we need a radical blueprint to achieve it."
He told BBC 2's Newsnight: "We've had a big improvement in terms of getting the unemployment level down; now we need to get the inactivity level down."
He added: "We've had three million new jobs under this government. That is not a culture of dependency, that's a real success in terms of full employment."
'Economically rational'
Incapacity benefit costs the Treasury about £12bn a year. But the Department for Work and Pensions said recently the number of claimants was at its lowest since 2000.
Mr Freud has said that of the 2.7 million people claiming incapacity benefit, only 700,000 need it.
He estimates it would be "economically rational" to pay up to £62,000 to a company which placed an incapacity benefit claimant in a job for at least three years.
Of the government's latest plans, shadow work and pensions secretary Chris Grayling said the government was trying to "steal Conservative language on welfare reform".
"We've set out very clear and very detailed plans for welfare reform based on the experience in other countries, a very full package," he said.
"Gordon Brown is tinkering around the edges - a bit of reform here, a bit of participation by the private sector, a slight toughening of sanctions. Nothing like the scale of radical change we would need."
The Liberal Democrats have previously welcomed the use of the voluntary and private sector to help more people back into employment, but said it must be "properly financed, and include provisions to help those with serious problems such as low skills or mental health problems".
But unions have raised concerns that contracting out services will lead to job cuts and "lower standards and the exploitation of claimants".
DWP Press release click here.
I also found this interesting.
Check Nick Robinsons Blog on this also.
NAM.
Thanks Ola/Zoe for getting back so quick with the THT presentation. It is in the process of being added to the main site for download.
Wednesday, 27 February 2008
We need a meeting place?
As part of our drive to become more organised. We need a meeting space so that those of us who are driving this campaign can come together regularly and plan.
If you are reading this and work for an organisation that would be willing to give us a room where we can meet. It will have to be evenings as some work. I would be very grateful if you would get in touch via john@hivbenefits.co.uk
If you are reading this and work for an organisation that would be willing to give us a room where we can meet. It will have to be evenings as some work. I would be very grateful if you would get in touch via john@hivbenefits.co.uk
Freedom Passes.
Some are concerned that they might loose there entitlement to their Freedom Passes if they face a change to there Disability Living / Mobility Allowance.
Some councils do award Freedom Passes to those who may not be eligible for DLA. Doing so depending on the circumstances of individual concerned & at the discretion of the Local Council.
Check with your own Local Council if you have any concerns.
Some councils do award Freedom Passes to those who may not be eligible for DLA. Doing so depending on the circumstances of individual concerned & at the discretion of the Local Council.
Check with your own Local Council if you have any concerns.
Tuesday, 26 February 2008
The last 24 Hours.
Just want to make you all aware of what has happened since the NAM/THT meeting.
You may recall a gentlemen. Who contributed to this meeting last evening. Who seemed to have some specific benefits realted knowledge. I have had some discussions with him. I will check to see if they he doesn't mind me using their first names on here. UPDATE : His name is Steve and he has good background experience.
Steve will be providing some information on the process we might go through when challenging any adverse decision we might have on our reviews. I will post it when I get it. Thanks guys.
They along with many of the comments both last evening and received during the day.
Clearly point to us having to organise ourselves better.
Many have the professional skill sets we need to make a start, and have made them available to help fight the issues we face. Though to move forward will need to find others with appropriate specialist skill to also help.
Time is the enemy of us all so we must seek to use it wisely.
Again pointing to the need to put a structure in place to play to our strengths as a community. Where serving the community as a whole is paramount and “ego” is left at the door.
So the current "background" conversation is around forming a "legally defined" organisation, a charity. So we can fight under the banner of a group rather than individually.Applying for funding for the incidental costs of running a campaign.
Clearly there is a niche for a national organisation to campaign for those within all of our HIV community. Who, for whatever reason. Rely on the state to meet their day-to-day financial needs.
Realising our limitations today are our goals for growth, tomorrow.
Initially this organisation will, because of size, only be able to generally help though the web & other media. Provide general guidance and information.
An organisation that empowers members of our community to tackle the benefit issues they face more specifically and independently. Giving the confidence to do so.
Though its existence & work. Shines a light on the failure of others i.e. the state. Taking them to task where appropriate.
I believe our community fell asleep. Many I meet are “seasoned” campaigners who fought for the rights our community have enjoyed, including myself, since the early days of HIV/AIDS. Many of these have because of age, numerous drug regimes and the results of surviving long term with HIV. Are not able to be as vocal or active of some of us. But we must harness this vast pool of strategic & tactical campaigning experience.
Most of us have Disability Living Allowance because of the fighting these people did at the time.
I have benefitted from this early work. Now it is my turn to stand up and be counted. I am so grateful for the advice, guidance and support.
We were caught of guard. We have some catching up to do. Our campaigning is already showing some results. We can do more.
We must not allow our community to sleep again. We must ensure the “mantle is always” passed on. Under the guidance of those who came before & learnt many of the lessons.
We know the how & why we feel let down over getting help with our benefit problems. Lets right this shameful wrong.
Many people who find this site thank me. Which I appreciate.
What can I do to help? They ask.
Very simple.
You may recall a gentlemen. Who contributed to this meeting last evening. Who seemed to have some specific benefits realted knowledge. I have had some discussions with him. I will check to see if they he doesn't mind me using their first names on here. UPDATE : His name is Steve and he has good background experience.
Steve will be providing some information on the process we might go through when challenging any adverse decision we might have on our reviews. I will post it when I get it. Thanks guys.
They along with many of the comments both last evening and received during the day.
Clearly point to us having to organise ourselves better.
Many have the professional skill sets we need to make a start, and have made them available to help fight the issues we face. Though to move forward will need to find others with appropriate specialist skill to also help.
Time is the enemy of us all so we must seek to use it wisely.
Again pointing to the need to put a structure in place to play to our strengths as a community. Where serving the community as a whole is paramount and “ego” is left at the door.
So the current "background" conversation is around forming a "legally defined" organisation, a charity. So we can fight under the banner of a group rather than individually.Applying for funding for the incidental costs of running a campaign.
Clearly there is a niche for a national organisation to campaign for those within all of our HIV community. Who, for whatever reason. Rely on the state to meet their day-to-day financial needs.
- To ensure that our community can access clear information for they or there support workers to use to help get those with HIV, the financial assistance they are entitled to.
- To raise awareness of the issues the HIV+ community faces to ensure fairness from the State in relation to benefits.
- To utilise the strengths and skills within our community to achieve this.
- An organisation that remains, independent, politically impartial, where no conflict of interest prevents campaigning on the issues.
- Deriving funding on the basis it is without strings allowing the voice of our community to be free.
- That where you live & how your local council invests it money in HIV services, doesn’t dictate who you can approach for support.
- To partner with likeminded organisations subject to the aforementioned.
- An organisation open & transparent to those who may use it.
- Accountable & scrutinised by those who use it.
- Ideally a co-operative type model where we all hold a stake.
- Where those who hold the necessary offices of responsibility do so on the basis that stakeholders have clearly indicated their ongoing approval.
- That our aim should be to accept criticism as a driver towards excellence. Where it is always welcome.
Realising our limitations today are our goals for growth, tomorrow.
Initially this organisation will, because of size, only be able to generally help though the web & other media. Provide general guidance and information.
An organisation that empowers members of our community to tackle the benefit issues they face more specifically and independently. Giving the confidence to do so.
Though its existence & work. Shines a light on the failure of others i.e. the state. Taking them to task where appropriate.
I believe our community fell asleep. Many I meet are “seasoned” campaigners who fought for the rights our community have enjoyed, including myself, since the early days of HIV/AIDS. Many of these have because of age, numerous drug regimes and the results of surviving long term with HIV. Are not able to be as vocal or active of some of us. But we must harness this vast pool of strategic & tactical campaigning experience.
Most of us have Disability Living Allowance because of the fighting these people did at the time.
I have benefitted from this early work. Now it is my turn to stand up and be counted. I am so grateful for the advice, guidance and support.
We were caught of guard. We have some catching up to do. Our campaigning is already showing some results. We can do more.
We must not allow our community to sleep again. We must ensure the “mantle is always” passed on. Under the guidance of those who came before & learnt many of the lessons.
We know the how & why we feel let down over getting help with our benefit problems. Lets right this shameful wrong.
Many people who find this site thank me. Which I appreciate.
What can I do to help? They ask.
Very simple.
- If you have a view or opinion express it.
- If you have a criticism, make it.
- But to serve us all. Spread the word, create awareness.
- If you only tell one other person that is a tremendous contribution to this cause. Awareness is golden.
This should be by us, for us, to serve us.
New website is live & picture of me posted.
Thanks to my partner for doing this so quickly and taking this off my hands.
Please feed back any errors or suggestions to john@hivbenefits.co.uk.
I have also added a picture of myself to the blog. I hopes this helps anyone who may come across this site. Realise there is a real person, a lay man (no pun intended) behind this.
Please feed back any errors or suggestions to john@hivbenefits.co.uk.
I have also added a picture of myself to the blog. I hopes this helps anyone who may come across this site. Realise there is a real person, a lay man (no pun intended) behind this.
THT meeting notes.
I have asked NAM to provide me with an electronic version of the THT presentation so those that missed getting a copy. Will be able to download it.
Current website.
Just to let you know my partner has now been tasked with the web stuff. He is currently redesigning the current website to make it more "user friendly".
The blog and current website were rushed as the situation demanded. Clearly we need to bring together the talent to bring the information from all sources together in a more "editorially" friendly and readable way.
We hope to place the new web site soon.
Any ideas would be welcome. This is after all, our resource and we will only all benefit if we contribute.
Thanks all.
The blog and current website were rushed as the situation demanded. Clearly we need to bring together the talent to bring the information from all sources together in a more "editorially" friendly and readable way.
We hope to place the new web site soon.
Any ideas would be welcome. This is after all, our resource and we will only all benefit if we contribute.
Thanks all.
Standard forms ...
Thank you to those who have raised this last evening and reminded me today.
Many feel a standard letter that people can print off and sign to send to their MP is a good idea. I agree.
I had alot of offers of help with this project last evening. This is one thing I will be discussing with some of those more skilled in these matters over the next few days (you have been warned LOL).
We also want to create other standard forms i.e. a sheet you can print off, daily for tracking your health for example. Any other ideas welcome.
Many feel a standard letter that people can print off and sign to send to their MP is a good idea. I agree.
I had alot of offers of help with this project last evening. This is one thing I will be discussing with some of those more skilled in these matters over the next few days (you have been warned LOL).
We also want to create other standard forms i.e. a sheet you can print off, daily for tracking your health for example. Any other ideas welcome.
Just a quick note.
Unfortunately today has been a day of appointments. So I will hopefully post later this evening
Monday, 25 February 2008
Meeting tonight update.
Thanks to Zoe from NAM for arranging this. Also on a personal level thanks to Ola for her presentation and time. It cannot have been easy for her.
The meeting was well attended (over 80). Much to the surprise of us all.
Thanks to all who attended. It is only as a community coming together that we can stand any chance to fight this.
To those who I told to email me rather than speak to . Forgive me I wasn't being rude. Only an email allows me the time to fully understand the comments & issues you raise and push it out to get any answer you need. I would forget otherwise.
Thank you to all for your support.
I will post more on tonights meeting on the web tomorrow and once I have confirmed some points of process that were raised.
The meeting was well attended (over 80). Much to the surprise of us all.
Thanks to all who attended. It is only as a community coming together that we can stand any chance to fight this.
To those who I told to email me rather than speak to . Forgive me I wasn't being rude. Only an email allows me the time to fully understand the comments & issues you raise and push it out to get any answer you need. I would forget otherwise.
Thank you to all for your support.
I will post more on tonights meeting on the web tomorrow and once I have confirmed some points of process that were raised.
NAM & THT meeting tonite..
If you need a map to the University of London click here.
There are some Blue Badge Disabled Parking spaces on Malet Street, One on Morwell Street, Store Street & Chenies Street.
Though parking should be free after 6.30pm.
Please take care not to park in a Green Badge Disabled Parking bay. Camden operates is own scheme for this inner London area and you may get a ticket. These bays are clearly marked.
See main website for details of meeting.
There are some Blue Badge Disabled Parking spaces on Malet Street, One on Morwell Street, Store Street & Chenies Street.
Though parking should be free after 6.30pm.
Please take care not to park in a Green Badge Disabled Parking bay. Camden operates is own scheme for this inner London area and you may get a ticket. These bays are clearly marked.
See main website for details of meeting.
Saturday, 23 February 2008
Update.
- Meeting on Monday NAM/THT see main website.
- No reply yet from Government Ministers for the letters written last weekend.
- Updates to blog & website
Friday, 22 February 2008
Saw my medic today
My medic has received my initial medical report requested. We talked about it, though I pointed out it seemed to matter very little about what was written in any detail as I still expected to receive a DL556 application form as was the process of present.
We agreed what would be written about existing medical conditions.
If you have received the initial form (DBD551) it is well worth getting in touch with your medic to discuss the medical report they will be asked for.
The problem medics face is that they have a legal obligation to tell the truth (as do you). However what they might write maybe interpreted in a way that leads to a loss or reduction on benefit. They are caught. They fully understand the implications of any loss of income in terms of overall health to there patients.
The State almost relies on people giving up at the "first hurdle" with any benefit process. That is why I always advocate you APPEAL any decision where you feel your loss or reduction of benefit is unfair.
We agreed what would be written about existing medical conditions.
If you have received the initial form (DBD551) it is well worth getting in touch with your medic to discuss the medical report they will be asked for.
The problem medics face is that they have a legal obligation to tell the truth (as do you). However what they might write maybe interpreted in a way that leads to a loss or reduction on benefit. They are caught. They fully understand the implications of any loss of income in terms of overall health to there patients.
The State almost relies on people giving up at the "first hurdle" with any benefit process. That is why I always advocate you APPEAL any decision where you feel your loss or reduction of benefit is unfair.
Wednesday, 20 February 2008
Chat conversation from another website.
I have been having an online chat with someone on another website. They too are facing the same issues as we all are.
They live in Birmingham & THT are helping them with the DLA556 reapplication form.
I will feed back on their experience when I hear back.
They live in Birmingham & THT are helping them with the DLA556 reapplication form.
I will feed back on their experience when I hear back.
Email experience .....
As always edited to protect he author.
1st email.
"I know we are worried about that is happening to our human rights
with the changes in benefits.
Just a thought or it may be a coincidence, but are you aware of
people being told by the clinics they are having to change combo? My
reasons for thinking about this, is that I am being asked to changed
and friends of mine have also been told by the consultants they
should change. Is it that the consultants are being put under
pressure to get people on to more stable combos so they can not use
the excuse of side effects are stopping me from working and it is
less tablets to take and you can take then at home at night away from
prying eyes?
Questions, questions, questions!!!"
My reply:
"This is probably more due to cost than anything else. Putting people on more stable combo's reduces the overall cost load to the NHS because there is less need to provide ongoing support services. Usually accessed by patients who have combo side effect issues.
The cost of drugs to treat side effects, cost of a bed should someone need to be hospitalised because of side effects are what the NHS is trying to reduce.
The current benefit reviews have no impact on this from what medics have told me. Quite the opposite they are worried about their patients.
I would be worried about resistance and the longer term options for medication if I was being asked to change my medication. If my current combo is working I wouldn't want to change. Keeping all the drugs, resistance allowing, in reserve should I need them.
However, if you are taking AZT they tend to want you off this if you have been on it for 5 years or more.
Hope this helps & thanks for your email."
2nd Email:
"Well in Eastbourne and Hastings clinics, they did
a massive swap of people on to Kivexa me included
and I had no reason to change off of
combivir. The clinics here in East Sussex are
more like a sponsorship deal with Kivexa. All the
pens, pads dairies have all the Kivexa logos on
them. I understand that Brighton is now starting to take the same route.
My friends that are under Brighton have just been
told that they should change off the current
combo and have not been given any reasons why.
I was forced back to work by the clinic in
Eastbourne and I have to say I am dead on my
feet. My health is worse now and a CD4 of less
that 325 and dropping. They have stated clearly
that it is not in the remit of the clinic to sign
people off and that all HIV patients should be
working. I am sure and I know the Community
Support Coordinator at THT in Eastboure will
agree, that we were guinea pigs 18 months ago on
how things were going to change and she was told
to shut up by management over this matter. As
people were being visited at home by the DWP and
interviewed and benefits taken away and told they are fit for work.
I wish everyone luck, but I do feel it will end
up in costing the country more in the long run
and the NHS if they try and get people back to work."
My reply:
"Can I post this to the blog?
I will edit it to protect your confidentiality."
3rd Email:
"
Since THT has become this great Corporate body, we have no one fighting our corner anymore. I am sure that as part of the governments drive to get people back to work and paying voluntary bodies to get people back to work by results, THT will be offering employment services very soon and like they have sneaked the "sexual Health" into the name and how opening Sexual health clinics.
From another website :
"February 19, 2008
Terrence Higgins Trust opens new HIV and sexual health centre in the Wirral
On 22nd February at 12.30pm HIV & sexual health charity Terrence Higgins Trust (THT), will be officially opening its new centre in Birkenhead which will serve the whole of the Wirral.
The opening will be attended by celebrity supporter Claire Sweeney, the Mayor of Wirral, Councillor Phil Gilchrist and the Chairman of Wirral Primary Care Trust, Frances Street. It will be an opportunity for clients, partner agencies and other interested parties to meet THT staff and members of the Executive Team to discuss plans for services in the area.
The new office, funded by Wirral Primary Care Trust will provide a range of services:
Representatives from the NHS and social services, other voluntary organisations, THT volunteers and staff will all be attending the open day.
Ewan Jenkins, Manager of the new office said “We’re delighted to be opening an office here in the Wirral. We’re looking forward to working with other organisations in the region to increase awareness of sexual health and support people who are living with HIV in the area.”"
Ends
So what next, the NHS will out source the clinics to THT.......God help us all!"
1st email.
"I know we are worried about that is happening to our human rights
with the changes in benefits.
Just a thought or it may be a coincidence, but are you aware of
people being told by the clinics they are having to change combo? My
reasons for thinking about this, is that I am being asked to changed
and friends of mine have also been told by the consultants they
should change. Is it that the consultants are being put under
pressure to get people on to more stable combos so they can not use
the excuse of side effects are stopping me from working and it is
less tablets to take and you can take then at home at night away from
prying eyes?
Questions, questions, questions!!!"
My reply:
"This is probably more due to cost than anything else. Putting people on more stable combo's reduces the overall cost load to the NHS because there is less need to provide ongoing support services. Usually accessed by patients who have combo side effect issues.
The cost of drugs to treat side effects, cost of a bed should someone need to be hospitalised because of side effects are what the NHS is trying to reduce.
The current benefit reviews have no impact on this from what medics have told me. Quite the opposite they are worried about their patients.
I would be worried about resistance and the longer term options for medication if I was being asked to change my medication. If my current combo is working I wouldn't want to change. Keeping all the drugs, resistance allowing, in reserve should I need them.
However, if you are taking AZT they tend to want you off this if you have been on it for 5 years or more.
Hope this helps & thanks for your email."
2nd Email:
"Well in Eastbourne and Hastings clinics, they did
a massive swap of people on to Kivexa me included
and I had no reason to change off of
combivir. The clinics here in East Sussex are
more like a sponsorship deal with Kivexa. All the
pens, pads dairies have all the Kivexa logos on
them. I understand that Brighton is now starting to take the same route.
My friends that are under Brighton have just been
told that they should change off the current
combo and have not been given any reasons why.
I was forced back to work by the clinic in
Eastbourne and I have to say I am dead on my
feet. My health is worse now and a CD4 of less
that 325 and dropping. They have stated clearly
that it is not in the remit of the clinic to sign
people off and that all HIV patients should be
working. I am sure and I know the Community
Support Coordinator at THT in Eastboure will
agree, that we were guinea pigs 18 months ago on
how things were going to change and she was told
to shut up by management over this matter. As
people were being visited at home by the DWP and
interviewed and benefits taken away and told they are fit for work.
I wish everyone luck, but I do feel it will end
up in costing the country more in the long run
and the NHS if they try and get people back to work."
My reply:
"Can I post this to the blog?
I will edit it to protect your confidentiality."
3rd Email:
"
Since THT has become this great Corporate body, we have no one fighting our corner anymore. I am sure that as part of the governments drive to get people back to work and paying voluntary bodies to get people back to work by results, THT will be offering employment services very soon and like they have sneaked the "sexual Health" into the name and how opening Sexual health clinics.
From another website :
"February 19, 2008
Terrence Higgins Trust opens new HIV and sexual health centre in the Wirral
On 22nd February at 12.30pm HIV & sexual health charity Terrence Higgins Trust (THT), will be officially opening its new centre in Birkenhead which will serve the whole of the Wirral.
The opening will be attended by celebrity supporter Claire Sweeney, the Mayor of Wirral, Councillor Phil Gilchrist and the Chairman of Wirral Primary Care Trust, Frances Street. It will be an opportunity for clients, partner agencies and other interested parties to meet THT staff and members of the Executive Team to discuss plans for services in the area.
The new office, funded by Wirral Primary Care Trust will provide a range of services:
- Health promotion outreach work focused on preventing HIV from being passed on
- Support groups and health advice for people affected by HIV and sexual ill health
- One to one support
- General information on sexually transmitted infections
- Condoms and safer sex information
- Counselling
- Raising sexual health awareness through training and education
Representatives from the NHS and social services, other voluntary organisations, THT volunteers and staff will all be attending the open day.
Ewan Jenkins, Manager of the new office said “We’re delighted to be opening an office here in the Wirral. We’re looking forward to working with other organisations in the region to increase awareness of sexual health and support people who are living with HIV in the area.”"
Ends
So what next, the NHS will out source the clinics to THT.......God help us all!"
Incapacity Benefit review. (IB50 Form).
Emailed to me from Jim. Edited as requested.
"I was talking with a Benefits Advisor this morning at my local hiv support service and mentioned to her that I had received an IB50 Incapacity for Work Questionnaire.
She queried the fact that as I was on the Highest Rate of Care Component on DLA that this was not necessary to complete. She then accessed on the web the regulations - link below
http://www.opsi.gov.uk/si/si1995/Uksi_19950311_en_1.htm
She then pointed out that under Part II Chapter III Paragraph 10 the first caluse under 2(a) states
exemption due to "that he is in receipt of the highest rate care component of disability living allowance".
Subsequently we phoned my DWP office and when I spoke with the agent he at first said that he was unaware of this exemption but on checking came back on the phone and said that this is correct and that I should ignore the form and that he would be advising Medical Records who would amend my records accordingly - and that I would be receiving a letter outlining my new next year benefit (I intend to check up again in a week's time by phone just to be sure that it has been amended as stated).
So it may be that you were/are aware of this, but thought that it may be wise to put it out there for anyone else in the same situation."
Thanks for this.
"I was talking with a Benefits Advisor this morning at my local hiv support service and mentioned to her that I had received an IB50 Incapacity for Work Questionnaire.
She queried the fact that as I was on the Highest Rate of Care Component on DLA that this was not necessary to complete. She then accessed on the web the regulations - link below
http://www.opsi.gov.uk/si/si1995/Uksi_19950311_en_1.htm
She then pointed out that under Part II Chapter III Paragraph 10 the first caluse under 2(a) states
exemption due to "that he is in receipt of the highest rate care component of disability living allowance".
Subsequently we phoned my DWP office and when I spoke with the agent he at first said that he was unaware of this exemption but on checking came back on the phone and said that this is correct and that I should ignore the form and that he would be advising Medical Records who would amend my records accordingly - and that I would be receiving a letter outlining my new next year benefit (I intend to check up again in a week's time by phone just to be sure that it has been amended as stated).
So it may be that you were/are aware of this, but thought that it may be wise to put it out there for anyone else in the same situation."
Thanks for this.
New forum started ...
I have started a forum on the Benefits & Work website. Please feel free to read & contribute.
Click here for this forum.
Click here for this forum.
Posting elsewhere...
The BBC have held some online debates in Benefit Changes on their "Have Your Say" section of the BBC News Website.
I post as "hivbenefits" to contribute to these issues.
I have posted to the
"Does system of incapacity benefits need reform?" debate.
"What should be done about sick note Britian?" at time of posting waiting for my comment to be moderated
I post as "hivbenefits" to contribute to these issues.
I have posted to the
"Does system of incapacity benefits need reform?" debate.
"What should be done about sick note Britian?" at time of posting waiting for my comment to be moderated
Sick notes ...
A story from the BBC. Alan Johnson the current Health Secretary is proposing changes.
Click here to read the story.
Click here to read the story.
Tuesday, 19 February 2008
Hammersmith & Fulham PCT
Just spoken to Hammersmith & Fulham PCT. They fund THT for counselling not Welfare Services. The council fund the Hammersmith CAB. This in turn has a service that runs every Wednesday at the River House Trust on an appointment basis.
Therefore I can only conclude that unless your local PCT or Council is providing funding to THT for Welfare Support provision. You are unlikely to get little help from them
Though they should be able to tell you who can help in your area. Worth a call to THT if you don't know.
Therefore I can only conclude that unless your local PCT or Council is providing funding to THT for Welfare Support provision. You are unlikely to get little help from them
Though they should be able to tell you who can help in your area. Worth a call to THT if you don't know.
Medication.
I am receiving comments, thank you all, about stopping medication.
I WOULD ADVISE YOU DO NOT STOP YOUR MEDICATION.
IT MAY CREATE LONG TERM RESISTANCE ISSUES & WILL CAUSE ILL HEALTH.
IF YOU SO STOP. DO SO UNDER ADVICE FROM YOUR CONSULTANT TO REDUCE YOUR RISK OF LONG TERM RESISTANCE.
I doubt that stopping your medication will have any impact other than to your health & long term prognosis.
HIV is seen as a chronic condition. So long as treatment options are available for you. The state may take the view that your condition is treatable. Therefore your decision. Mental issues aside. To stop or not taking your medication is purely your choice. They may take the view that the State is provinding the support, medically that you need. To manage your condition.
However, unless you have no treatment options left. That is, you are resistant to all existing therapies & they cease to control your HIV. Where your prognosis is defined medically as "Terminal" with a short term life expectancy. This is clearly a different case. Different rules apply. Notify the Department for Work & Pensions.
Special rules still exist if you are terminally ill.
It is likely few with HIV would be in the situation.
If you are reading this and your prognosis is "Terminal". Please know you are in our thoughts.
The HIV medics are worried that people may stop their medication because of this. Stopping your medication is not likely to improve your chances with respect to any review you may be undergoing. It will merely put you, your loved ones & the NHS under pressure.
If the above is unclear. Please feel free to email me.
I WOULD ADVISE YOU DO NOT STOP YOUR MEDICATION.
IT MAY CREATE LONG TERM RESISTANCE ISSUES & WILL CAUSE ILL HEALTH.
IF YOU SO STOP. DO SO UNDER ADVICE FROM YOUR CONSULTANT TO REDUCE YOUR RISK OF LONG TERM RESISTANCE.
I doubt that stopping your medication will have any impact other than to your health & long term prognosis.
HIV is seen as a chronic condition. So long as treatment options are available for you. The state may take the view that your condition is treatable. Therefore your decision. Mental issues aside. To stop or not taking your medication is purely your choice. They may take the view that the State is provinding the support, medically that you need. To manage your condition.
However, unless you have no treatment options left. That is, you are resistant to all existing therapies & they cease to control your HIV. Where your prognosis is defined medically as "Terminal" with a short term life expectancy. This is clearly a different case. Different rules apply. Notify the Department for Work & Pensions.
Special rules still exist if you are terminally ill.
It is likely few with HIV would be in the situation.
If you are reading this and your prognosis is "Terminal". Please know you are in our thoughts.
The HIV medics are worried that people may stop their medication because of this. Stopping your medication is not likely to improve your chances with respect to any review you may be undergoing. It will merely put you, your loved ones & the NHS under pressure.
If the above is unclear. Please feel free to email me.
Monday, 18 February 2008
Hammersmith & Fulham PCT & THT
According to the accounts for THT 2006/7 Hammersmith & Fulham PCT are listed as contributing funding to THT. The are now re-tendering. I have added information to the links pages on the website.
Is this why THT were so unhelpful in our earlier telephone conversation asking for help?
Is this why THT were so unhelpful in our earlier telephone conversation asking for help?
Sunday, 17 February 2008
Added a poll
I have added a poll to give an indication of the types of people use this blog. Please vote. You don't need to give your identity.
My Partners DLA(556) form.
We have completed this form and submitted it with additional information. Make sure if you are providing additional information, every sheet has your name and National Insurance Number on it.
I would advise.Iif you get this form. You photocopy it and use a pencil fill it in. Then leave a few days and revise it. You will be surprised at how much you remember when you go back to it. You have 4 weeks to send it back.
Remember much of the information relates to when you have a "bad day".
When you have completed the original. Photocopy it for your records.
I am also going to submit a request under the Data Protection Act to acquire our original application forms & correspondence.
We noticed the following on the form :
I would advise.Iif you get this form. You photocopy it and use a pencil fill it in. Then leave a few days and revise it. You will be surprised at how much you remember when you go back to it. You have 4 weeks to send it back.
Remember much of the information relates to when you have a "bad day".
When you have completed the original. Photocopy it for your records.
I am also going to submit a request under the Data Protection Act to acquire our original application forms & correspondence.
We noticed the following on the form :
- Part 4 : " Do you need help or have difficulties caring for yourself" if you tick Yes it refers you back to the previous page.????
- The form is split between Day and Night. When filling out the Night section. Be aware you may have already given an answer earlier in the form. You may want to refer to a previous answer and add additional information.
Saturday, 16 February 2008
Written to
I have written to the Minister for Disabled People, Secretary of State DWP & the Chairman of the Work & Pensions Select Committee.
"If only to dot the i's and cross the t's"
Be interesting if I
a) get a reply
b) content of reply.
Will post to web complete correspondence in due course.
"If only to dot the i's and cross the t's"
Be interesting if I
a) get a reply
b) content of reply.
Will post to web complete correspondence in due course.
Friday, 15 February 2008
From email.
Comment from contributor via email.
"Will this stand up as an argument against the DLA review?
Times online report:
HIV vaccine may never be found, warns leading Scientist.
http://www.timesonline.co.uk/tol/news/uk/health/article3370346.ece
Nothings really changed since the 1980s.
Medication = a reprieve, a prolonged death sentence.
DLA helps (medication short & long term Side effects aside) the quality of that still shortened life expectancy. Any one an idea of what the long term effect of pumping all these drugs into our system will be in the near future.
There's so many different combinations & ever new 'experimental' drugs that seem to do the trick now but who knows how & for how long?
Lab mice & monkeys?
Please all due respect to the research doctors, scientists & any one else in the HIV business for trying though. Don't stop please."
"Will this stand up as an argument against the DLA review?
Times online report:
HIV vaccine may never be found, warns leading Scientist.
http://www.timesonline.co.uk/tol/news/uk/health/article3370346.ece
Nothings really changed since the 1980s.
Medication = a reprieve, a prolonged death sentence.
DLA helps (medication short & long term Side effects aside) the quality of that still shortened life expectancy. Any one an idea of what the long term effect of pumping all these drugs into our system will be in the near future.
There's so many different combinations & ever new 'experimental' drugs that seem to do the trick now but who knows how & for how long?
Lab mice & monkeys?
Please all due respect to the research doctors, scientists & any one else in the HIV business for trying though. Don't stop please."
Problems posting comments to blog.
Apologies all & thanks to the person who let me know.
The blog seems to have reset itself to only allowing you to comment if you were a "Google" account holder.
I have changed this to allow anyone including anonymous comments to be added.
The blog allows me to moderate comments made anyway.
You should be able to comment now.If not please let me know.
The blog seems to have reset itself to only allowing you to comment if you were a "Google" account holder.
I have changed this to allow anyone including anonymous comments to be added.
The blog allows me to moderate comments made anyway.
You should be able to comment now.If not please let me know.
Thursday, 14 February 2008
New Website Front end.
I have added a web site front end to the blog.
If you have accessed this blog from the url http://hivdlareview.blogspot.com.
You might wish to navigate to the main website http://www.hivbenefits.co.uk
I hope this will allow easier access to information. It will also allow me to put up specific pages on relevant issues.
I will always post in the first instance here.
The site has gone live. If you find any problems with it please email me : John@hivbenefits.co.uk
If you have accessed this blog from the url http://hivdlareview.blogspot.com.
You might wish to navigate to the main website http://www.hivbenefits.co.uk
I hope this will allow easier access to information. It will also allow me to put up specific pages on relevant issues.
I will always post in the first instance here.
The site has gone live. If you find any problems with it please email me : John@hivbenefits.co.uk
Positive Nation Magazine.
Just spoken to Postive Nation magazine who confirm they will be covering the DLA Review in there March issue.
You can subscribe to the magazine here.
Thanks for this.
You can subscribe to the magazine here.
Thanks for this.
Dates for your diaries .....
In the email today from the KVN forum supporting HIV patients at the Kobler, Victoria Clinic & Nkosi Johnson Clinics.
"The next KVN Positive Forum meeting on Tuesday 4th March will be discussing DLA review which seems to be affecting many HIV applicants at the present time.
The meeting is scheduled for Tuesday 4th March from 6pm-8pm at the usual venue - 4th Floor Conference Room, St Stephens (Kobler) Centre, Chelsea & Westminster Hospital. It would be good if as many members (and guests) as possible could attend to participate and share information/experiences.
On the same topic, there is a NAM meeting on Monday 25th February at the following venue which may be of interest to members as well.
http://www.aidsmap.com/cms1038352.asp
"
Thanks to the forum for this.
NAM tell me there is space for about 80 people providing about 45 chairs. If you want to attend and require a seat. It maybe worth calling NAM on 020 7840 0050 so they can cater for your needs.
I certainly will be attending both.
"The next KVN Positive Forum meeting on Tuesday 4th March will be discussing DLA review which seems to be affecting many HIV applicants at the present time.
The meeting is scheduled for Tuesday 4th March from 6pm-8pm at the usual venue - 4th Floor Conference Room, St Stephens (Kobler) Centre, Chelsea & Westminster Hospital. It would be good if as many members (and guests) as possible could attend to participate and share information/experiences.
On the same topic, there is a NAM meeting on Monday 25th February at the following venue which may be of interest to members as well.
http://www.aidsmap.com/cms1038352.asp
"
Thanks to the forum for this.
NAM tell me there is space for about 80 people providing about 45 chairs. If you want to attend and require a seat. It maybe worth calling NAM on 020 7840 0050 so they can cater for your needs.
I certainly will be attending both.
A shared experience - Thank you.
"hi i am pleased to find a site that gives information on the dla review, i sent my dbd551 form back on 7th january, i have been waiting for news for a few weeks, so i rang the dla phone number and they told me that they were still waiting for a reply from my doctor at "my London" clinic, they said that they had been in touch with "my London clinic" and that because the clinic were inundated with these forms that it would take longer than usual to hear from them,it is so stressful waiting for a reply, i can only hope that when news comes it is good news, though somehow i feel that most people will have to reapply.i am so pleased that you have set up this forum where people can at least be kept informed, keeep up the good work,"
Edited to maintain confidentiality. This very much reflects the experience many clinics are facing unfortunately.
Look if your local council provides HIV services. You can find out from your local council website. Otherwise ask in your clinic if they can recommend an avenue of help for you.
HIV medics are having a hard time also with this review. They have a legal duty to provide accurate information. For them. Knowing you so well as their patient. They worry that what they might write. May have a negative effect on your current entitlement. However there report is interpreted by the DWP who are often not as specialised medically. Your medic is on your side.
Thanks to the originator of the emailed comment.
I welcome all feedback. It is only together that we will help each other.
Edited to maintain confidentiality. This very much reflects the experience many clinics are facing unfortunately.
Look if your local council provides HIV services. You can find out from your local council website. Otherwise ask in your clinic if they can recommend an avenue of help for you.
HIV medics are having a hard time also with this review. They have a legal duty to provide accurate information. For them. Knowing you so well as their patient. They worry that what they might write. May have a negative effect on your current entitlement. However there report is interpreted by the DWP who are often not as specialised medically. Your medic is on your side.
Thanks to the originator of the emailed comment.
I welcome all feedback. It is only together that we will help each other.
Wednesday, 13 February 2008
Progress on my claim.
Even though I submitted my forms before my partner. He recieved his DLA556 form has already arrived. We are currently completing it.
My consultant called to confirm that the medical report form has just arrived for me! There seems to be no logical time frame as to how long each part of this process should take.
No doubt I will receive my DLA556 application form in the next few weeks.
The DLA556 form is sent. If following yor medical report. The DWP believe there has been a change in your condtion since you last applied. It is in effect an application form for the Disability Living Allowance. Rather like a re-application.
As always when something happens I will post.
Also, I am busy on the phone pushing awareness. Thanks to those who have taken my call.
My consultant called to confirm that the medical report form has just arrived for me! There seems to be no logical time frame as to how long each part of this process should take.
No doubt I will receive my DLA556 application form in the next few weeks.
The DLA556 form is sent. If following yor medical report. The DWP believe there has been a change in your condtion since you last applied. It is in effect an application form for the Disability Living Allowance. Rather like a re-application.
As always when something happens I will post.
Also, I am busy on the phone pushing awareness. Thanks to those who have taken my call.
Motability.
If you have any concerns about a car or vehicle you have under the Motability Scheme please call them on : 0845 456 4566 (8.30am till 5.30pm Monday to Friday).
However, as many comments & emails I have received mention worries about Motability Cars. I called them today to get some general advice. Please email me if you need any clarification.
There are two components to the Disability Living Allowance. Disability Living Allowance is awarded at three rates for personal care.
The other component is , the Mobility component also awarded at three rates. Where you are awarded the "Higher Rate". You can use your allowance to take part in the Motability Car Scheme.
I do not know how the review is impacting the Mobility component. Please email me if you have any experience to share.
However, as many comments & emails I have received mention worries about Motability Cars. I called them today to get some general advice. Please email me if you need any clarification.
There are two components to the Disability Living Allowance. Disability Living Allowance is awarded at three rates for personal care.
The other component is , the Mobility component also awarded at three rates. Where you are awarded the "Higher Rate". You can use your allowance to take part in the Motability Car Scheme.
I do not know how the review is impacting the Mobility component. Please email me if you have any experience to share.
- If your Mobility component is reviewed. And you awarded the "medium" or "lower rate". The DWP will inform you & Motability of the case.
- You then have the right to appeal that decision. An appeal can take up to three months. Inform Motability that you have made an appeal. During the appeal period you retain your car. The cost is met by Motability. You incur no extra charge.
- The DWP will write to you & Motability with the decision of the appeal.
- If your appeal is successful. You continue your contract with your car as normal.
- If your appeal is not successful. Motability will make arrangements with you to collect your car. You contract for your car ends. You will not be charged for any period of your contract that is outstanding.
I called the campaign office for Mr. Brian Paddick
Following on from an earlier post where it was suggested I contact Mr. Brian Paddick Mayoral contender for the Liberal Democrats in London. I telephoned his campaign office this morning.
It has to be understood that any benefit review or change is an action of National Government. Outside of the remit of the Mayor of London.
I explained to the gentleman I spoke to. That it had been suggested to me by a previous poster. I approach Mr. Paddick. Whereas I understood this issue was outside of the campaign for Mayor. It would be helpful for Mr. Paddick, when he engages with the gay community. Where this issue was raised. He would have some background to draw from.
Also that we would all appreciate it if he would, where he could, make people aware of this issue.
On behalf of us all. Thanks Mr. Paddick for any effort you make in creating more awareness of this issue.
Note: The author of this site has to remain politically neutral. This entry does not constitute an endorsement of any political party.
It has to be understood that any benefit review or change is an action of National Government. Outside of the remit of the Mayor of London.
I explained to the gentleman I spoke to. That it had been suggested to me by a previous poster. I approach Mr. Paddick. Whereas I understood this issue was outside of the campaign for Mayor. It would be helpful for Mr. Paddick, when he engages with the gay community. Where this issue was raised. He would have some background to draw from.
Also that we would all appreciate it if he would, where he could, make people aware of this issue.
On behalf of us all. Thanks Mr. Paddick for any effort you make in creating more awareness of this issue.
Note: The author of this site has to remain politically neutral. This entry does not constitute an endorsement of any political party.
A comment from a previous post.
"Congratulations on setting up this blog - the first thing you seem to learn with hiv is that when it really counts the one thing you can always be sure of is that you're usually on your own!
I am in the same situation regarding the DLA review, trying to access some guidance concerning the DLA556 form, and had the same experience with THT - although they tried to be as helpful as possible on the telephone (I found myself feeling sorry for the guy, who spent ages trying to locate someone), the organisation's management doesn't seem at all interested in providing the kind of support that people living with hiv are looking to them to provide - but I guess that that is hardly a new story! The excuse is funding as you say, but I did a research project involving the archives of a major funding charity for hiv nad AIDS a couple of years back and alot of orgainsations in the past seem to have done tremendously valuable work focused on the needs of people affected by hiv with access to far poorer funding than THT currently enjoys.
The only resource available to me in Harringey, in north London, is also on a single opportunity, once a week, basis for 3 hours. You can't book, and their answerphone message announces that they will not respond to messages - I can vouch for the fact that they don't!
With time running out to complete and return the 36 page form, I've realised that to have any chance of a fair review I will have to pay a minimum of £300 to a solicitor (I bought my home years before I got the boot from my job, so have too much equity in it to qualify for legal aid - but obviously you can't eat bricks and mortar and you need a roof over your head). This is a very stressful and unhappy situation, and I know that I, at least, feel badly let down."
Thanks for this post. Check any insurance policy you have (car/health??/house), or credit cards you hold. Sometimes you may get a free legal service as part of your package of incentives check your contracts.
I am in the same situation regarding the DLA review, trying to access some guidance concerning the DLA556 form, and had the same experience with THT - although they tried to be as helpful as possible on the telephone (I found myself feeling sorry for the guy, who spent ages trying to locate someone), the organisation's management doesn't seem at all interested in providing the kind of support that people living with hiv are looking to them to provide - but I guess that that is hardly a new story! The excuse is funding as you say, but I did a research project involving the archives of a major funding charity for hiv nad AIDS a couple of years back and alot of orgainsations in the past seem to have done tremendously valuable work focused on the needs of people affected by hiv with access to far poorer funding than THT currently enjoys.
The only resource available to me in Harringey, in north London, is also on a single opportunity, once a week, basis for 3 hours. You can't book, and their answerphone message announces that they will not respond to messages - I can vouch for the fact that they don't!
With time running out to complete and return the 36 page form, I've realised that to have any chance of a fair review I will have to pay a minimum of £300 to a solicitor (I bought my home years before I got the boot from my job, so have too much equity in it to qualify for legal aid - but obviously you can't eat bricks and mortar and you need a roof over your head). This is a very stressful and unhappy situation, and I know that I, at least, feel badly let down."
Thanks for this post. Check any insurance policy you have (car/health??/house), or credit cards you hold. Sometimes you may get a free legal service as part of your package of incentives check your contracts.
Tuesday, 12 February 2008
A shared experience - Thank you.
This came in the email recently. Sorry its a long post but is complete. I have edited it to maintain confidentiality. Thanks for taking the time to email & sharing your experience & views.
Initial email :
"Thank so much for the HIV & DLA review forum. A “close relative” has had his forms hidden away for three weeks to scared to open them. A friend tidying up for him found them recently & acted quickly within the time frame allowed, we now wait anxiously for the outcome. My “close relative” understandably has an ostrich approach to life. Doesn't see it wont happen.
AT least I know what to expect when its my turn on hearing the post hits MY floor everyday............
The whole thing has become a nightmare as I am having to do all the research myself for both my “close relative” & myself. The forum has been extremely informative & so glad I found it, BUT I am still extremely anxious, having sleepless nights worrying about the outcome. Being ** y/o & diagnosed 17 years ago, 'made redundant' two weeks later?? Very suspicious but hey it was a big American take over & I suspect related.
I'm apprehensive about the future. My “close relative” has been positive for 12 years. The whole situation has had an almighty effect on all our family.
If ever there was a call for an experiment on how HIV can differently affect siblings, we will be ideal guinea pigs. My brother has had every opportunistic infection going, for ever having adverse reactions to medications, KS, PCP, to name a few. I on the other hand suffer no more serious than the occasional pneumonia or viral meningitis. Living with HIV has been more a problem for me than the physicality of the disease. I'm now diazepam dependant because of it. Oh & how my GP hates giving me repeat prescriptions for it, deal with your issues is a common response. How & with who? I've not been told despite asking.
It appears that no one really knows what's going on & what's terrifying is that when diagnosed 6 months to live 17 years ago, I made financial decisions that I now regret as I'm not eligible for Insurance or policies that would have secured my home for my HIV negative partner in the event of death, whether HIV related or not. I'm not the only one I know who made the most of a very bad situation at the time of a shortened life expectancy.
I suspected back in 199* this would happen when medical advances started to improve the quality of the lives of so many I know & so prepared myself by retraining as many of my friends did BUT have had so far had no success on the employment side. I know that a five-day 9-5 job would be a major struggle physically but I WOULD HAVE to manage. Quality of life may be financially better for some, not so sure emotionally & mentally. How the hell do you explain, without arousing suspicion, what you've been doing for the last 17 years & at what point? Advice can be taken on the right approach but I foresee problems with any employer outside of the 'gay industry that would want to employee with baggage.
There are some many unanswered questions if & when someone's DLA is taken away. Does it take effect immediately? Does that mean we can no longer pay our mortgages? How would effect other benefits i.e. Incapacity benefit? I thought that the DS1500 & DLA would at least be a security to top up a salary for low paid positions offered that I now may have to apply for as my options & time are running out. So to the Motability car which would also have enable me to seek work further a field than just locally.
Sorry I could go on & on.........
I'm not sure why I've emailed you in truth except again to thank you for the reassurance that my “close relative” & I are not alone, but maybe my email might help in giving you yet another case for the attempt at having the DLA witch hunt stopped & not just for those of us that are HIV positive.
You may use some or all of this on the forum but PLEASE NOT my details. I'm paranoid enough as it is. A white van out side the house is enough to send me into a crisis. "
I responded :
"All the issues you raise are fairly typical. The reason for the blog was to help but more to encourage dialog with those that HAD already been accessed so more of the unanswered questions could be answered. The blog can be intimidating and my direct approach on most things might make the issues somewhat daunting. I have been working on a website to try and soften the approach.
Not all stories are bad. Though if I am honest most I hear of are of a loss of some or all DLA.
Funny, we both had the forms. My partner is being reassessed and we are currently working through the form as your email arrives. I have heard nothing so far.
Your “close relative” is very much the type of person that worries me and encourages me to keep going. He is fortunate to have you. It’s the ones who don’t will suffer more adversely. If not responded to. The benefit would have been withdrawn. He would have had to apply afresh anyway.
Yes I have a post-it to call Motability to find out what the situation is. Will try and do that this week and post something. One of the problems is the more I post the more negative it can sound. Those that feel happy to email me thank me for starting the blog but are the minority. The blog has had 370 hits and on a forum elsewhere about the same. I have had about a dozen email me. I believe in “fore warned is fore armed”. I am aware the blog could look very bleak. However there are no straight answers because like HIV, everyone’s situation is different.
But the awareness is growing which is good. People are talking more openly.
I will edit & post your comments. I fully understand your confidentiality.
On the GP front. The KVN forum held a meeting about the increasing role of the GP in HIV care. This apparently has affected the Health commissions thinking. Because so many people came forward with really bad experiences.
You don’t say which area of the country you are in. Does your clinic have a patient’s forum?
Good luck with your applications. Let me know how you both get on."
Followed by :
"Thank you for replying John,
After a relatively good nights sleep for a change, mind you a couple of sleeping pills helped, I do feel a bit more positive this morning.
I live in” London ”& I must admit the services here have been excellent with the original LEAN & the Globe centre, which have now merged as POSITIVE EAST.
My “close relative” lives in Brighton, he appears to have almost a permanent bed at the hospital. He has a very good CAB woman who has helped him in the past, its just getting him to do anything that is the problem.
Just a thought....... how about trying to get our Mr PADDICK somehow on board, after all I'm sure he is hoping for a large PINK VOTE for the mayoral elections."
My last response :
"Good to hear Positive East are helping you. I will add a link to there website. I notice this issue is prominent on their website. I have called Positive East and left a message.
I would email Mr. Paddick however there is no email address on his mayoral website. Yet plenty of ways to promote his campaign."
Note: The author of this site has to remain politically neutral. Any political view expressed or implied is the view of the original author of comment / email.
Initial email :
"Thank so much for the HIV & DLA review forum. A “close relative” has had his forms hidden away for three weeks to scared to open them. A friend tidying up for him found them recently & acted quickly within the time frame allowed, we now wait anxiously for the outcome. My “close relative” understandably has an ostrich approach to life. Doesn't see it wont happen.
AT least I know what to expect when its my turn on hearing the post hits MY floor everyday............
The whole thing has become a nightmare as I am having to do all the research myself for both my “close relative” & myself. The forum has been extremely informative & so glad I found it, BUT I am still extremely anxious, having sleepless nights worrying about the outcome. Being ** y/o & diagnosed 17 years ago, 'made redundant' two weeks later?? Very suspicious but hey it was a big American take over & I suspect related.
I'm apprehensive about the future. My “close relative” has been positive for 12 years. The whole situation has had an almighty effect on all our family.
If ever there was a call for an experiment on how HIV can differently affect siblings, we will be ideal guinea pigs. My brother has had every opportunistic infection going, for ever having adverse reactions to medications, KS, PCP, to name a few. I on the other hand suffer no more serious than the occasional pneumonia or viral meningitis. Living with HIV has been more a problem for me than the physicality of the disease. I'm now diazepam dependant because of it. Oh & how my GP hates giving me repeat prescriptions for it, deal with your issues is a common response. How & with who? I've not been told despite asking.
It appears that no one really knows what's going on & what's terrifying is that when diagnosed 6 months to live 17 years ago, I made financial decisions that I now regret as I'm not eligible for Insurance or policies that would have secured my home for my HIV negative partner in the event of death, whether HIV related or not. I'm not the only one I know who made the most of a very bad situation at the time of a shortened life expectancy.
I suspected back in 199* this would happen when medical advances started to improve the quality of the lives of so many I know & so prepared myself by retraining as many of my friends did BUT have had so far had no success on the employment side. I know that a five-day 9-5 job would be a major struggle physically but I WOULD HAVE to manage. Quality of life may be financially better for some, not so sure emotionally & mentally. How the hell do you explain, without arousing suspicion, what you've been doing for the last 17 years & at what point? Advice can be taken on the right approach but I foresee problems with any employer outside of the 'gay industry that would want to employee with baggage.
There are some many unanswered questions if & when someone's DLA is taken away. Does it take effect immediately? Does that mean we can no longer pay our mortgages? How would effect other benefits i.e. Incapacity benefit? I thought that the DS1500 & DLA would at least be a security to top up a salary for low paid positions offered that I now may have to apply for as my options & time are running out. So to the Motability car which would also have enable me to seek work further a field than just locally.
Sorry I could go on & on.........
I'm not sure why I've emailed you in truth except again to thank you for the reassurance that my “close relative” & I are not alone, but maybe my email might help in giving you yet another case for the attempt at having the DLA witch hunt stopped & not just for those of us that are HIV positive.
You may use some or all of this on the forum but PLEASE NOT my details. I'm paranoid enough as it is. A white van out side the house is enough to send me into a crisis. "
I responded :
"All the issues you raise are fairly typical. The reason for the blog was to help but more to encourage dialog with those that HAD already been accessed so more of the unanswered questions could be answered. The blog can be intimidating and my direct approach on most things might make the issues somewhat daunting. I have been working on a website to try and soften the approach.
Not all stories are bad. Though if I am honest most I hear of are of a loss of some or all DLA.
Funny, we both had the forms. My partner is being reassessed and we are currently working through the form as your email arrives. I have heard nothing so far.
Your “close relative” is very much the type of person that worries me and encourages me to keep going. He is fortunate to have you. It’s the ones who don’t will suffer more adversely. If not responded to. The benefit would have been withdrawn. He would have had to apply afresh anyway.
Yes I have a post-it to call Motability to find out what the situation is. Will try and do that this week and post something. One of the problems is the more I post the more negative it can sound. Those that feel happy to email me thank me for starting the blog but are the minority. The blog has had 370 hits and on a forum elsewhere about the same. I have had about a dozen email me. I believe in “fore warned is fore armed”. I am aware the blog could look very bleak. However there are no straight answers because like HIV, everyone’s situation is different.
But the awareness is growing which is good. People are talking more openly.
I will edit & post your comments. I fully understand your confidentiality.
On the GP front. The KVN forum held a meeting about the increasing role of the GP in HIV care. This apparently has affected the Health commissions thinking. Because so many people came forward with really bad experiences.
You don’t say which area of the country you are in. Does your clinic have a patient’s forum?
Good luck with your applications. Let me know how you both get on."
Followed by :
"Thank you for replying John,
After a relatively good nights sleep for a change, mind you a couple of sleeping pills helped, I do feel a bit more positive this morning.
I live in” London ”& I must admit the services here have been excellent with the original LEAN & the Globe centre, which have now merged as POSITIVE EAST.
My “close relative” lives in Brighton, he appears to have almost a permanent bed at the hospital. He has a very good CAB woman who has helped him in the past, its just getting him to do anything that is the problem.
Just a thought....... how about trying to get our Mr PADDICK somehow on board, after all I'm sure he is hoping for a large PINK VOTE for the mayoral elections."
My last response :
"Good to hear Positive East are helping you. I will add a link to there website. I notice this issue is prominent on their website. I have called Positive East and left a message.
I would email Mr. Paddick however there is no email address on his mayoral website. Yet plenty of ways to promote his campaign."
Note: The author of this site has to remain politically neutral. Any political view expressed or implied is the view of the original author of comment / email.
Sunday, 10 February 2008
Thanks to QX Magazine.
QX magazine covers the Gay Community.
Page 8 of this weeks magazine carried an article about this review.
Thank you for helping promote awareness of this issue.
Clicking the link will download the pdf of the magazine.
Incapacity Benefit review.
Not unrelated to the DLA review. Many also claim Incapacity Benefit. This raised other issues. The emails I get are mentioning this subject also. Here is what I understand. Please feel free to email or comment if I have any issue wrong or with your experience.
Disability Living Allowance \ other benefits.
If you receive other benefits where the amount you recieve is dependant on the level of DLA you get. I can only assume that these benefits levels may be lost or reduced depending on the level of DLA you will get post your review. You have a legal duty to declare on forms sent to you to ensure your information is up to date. Check with your solicitor/welfare advisor/ social worker for clarity.
Incapacity Benefit.
The Welfare Reform Act 2007 comes into force later this year. They are replacing Incapacity Benefit, Jobseekers Allowance & Income Support with the “Employment & Support Allowance”. As far as I can gather. I have just started reading the explanatory notes before tackling the act. Those applying will get a basic allowance. Following an assessment period (13 Weeks max.). You are then awarded either a work supplement which will require you to engage in activity towards finding a job. Or you will be awarded the support supplement. The support supplement will not place a duty on you to engage in the "seeking work conditions" of the work component. Though the support supplement will be reviewed yearly.
Many I know are being called in to reassess their Incapacity Benefit. They get the forms fill them in. Have an interview at the job centre & may have to undergo a medical examination by a DWP medic. This assessment I gather is so that when the new benefit package comes online. All existing claimants have been assessed and then transferred to the relevant core benefit & appropriate supplement. Clearly to assess 1.2 million claims within the first 13 weeks of the new benefit going live would result in chaos.
Also, the Benefit Integrity project is looking at Incapacity Benefit to ensure it is going to the right people.
Job Centre interview.
When you get the letter this can cause anxiety. However the interview is mainly to introduce you to the services that the Job Centre can offer IF you decide in the future to try and get back into work.
It is not as daunting it seems. They really are just trying to be supportive and will not (in my experience) place you under any pressure. They are just offering you help.
Interviews are often held in the "open plan" office. You can ask to been seen in a less public space if you need to discuss your HIV. In my experience they are only to happy to do this. In the last case where I accompanied someone. When I mentioned that if the conversation required a discussion of medical issues it would have to be in private. The case officer said he was aware of the medical condition & there was no need to further discuss it.
Medical.
You maybe asked to go to a medical. Just be very frank with the medic. Remember the fact you may be having a "good day" and thus there. Is not indicitive of what a "bad day" is. They will understand this. They will usually talk about the information you have written on the form. In my experience they are very sympathetic.
If you are worried & need advice please seek professional advice from your Solicitor/Welfare worker/Social Services/Citizen Advice Bureau.
Disability Living Allowance \ other benefits.
If you receive other benefits where the amount you recieve is dependant on the level of DLA you get. I can only assume that these benefits levels may be lost or reduced depending on the level of DLA you will get post your review. You have a legal duty to declare on forms sent to you to ensure your information is up to date. Check with your solicitor/welfare advisor/ social worker for clarity.
Incapacity Benefit.
The Welfare Reform Act 2007 comes into force later this year. They are replacing Incapacity Benefit, Jobseekers Allowance & Income Support with the “Employment & Support Allowance”. As far as I can gather. I have just started reading the explanatory notes before tackling the act. Those applying will get a basic allowance. Following an assessment period (13 Weeks max.). You are then awarded either a work supplement which will require you to engage in activity towards finding a job. Or you will be awarded the support supplement. The support supplement will not place a duty on you to engage in the "seeking work conditions" of the work component. Though the support supplement will be reviewed yearly.
Many I know are being called in to reassess their Incapacity Benefit. They get the forms fill them in. Have an interview at the job centre & may have to undergo a medical examination by a DWP medic. This assessment I gather is so that when the new benefit package comes online. All existing claimants have been assessed and then transferred to the relevant core benefit & appropriate supplement. Clearly to assess 1.2 million claims within the first 13 weeks of the new benefit going live would result in chaos.
Also, the Benefit Integrity project is looking at Incapacity Benefit to ensure it is going to the right people.
Job Centre interview.
When you get the letter this can cause anxiety. However the interview is mainly to introduce you to the services that the Job Centre can offer IF you decide in the future to try and get back into work.
It is not as daunting it seems. They really are just trying to be supportive and will not (in my experience) place you under any pressure. They are just offering you help.
Interviews are often held in the "open plan" office. You can ask to been seen in a less public space if you need to discuss your HIV. In my experience they are only to happy to do this. In the last case where I accompanied someone. When I mentioned that if the conversation required a discussion of medical issues it would have to be in private. The case officer said he was aware of the medical condition & there was no need to further discuss it.
Medical.
You maybe asked to go to a medical. Just be very frank with the medic. Remember the fact you may be having a "good day" and thus there. Is not indicitive of what a "bad day" is. They will understand this. They will usually talk about the information you have written on the form. In my experience they are very sympathetic.
If you are worried & need advice please seek professional advice from your Solicitor/Welfare worker/Social Services/Citizen Advice Bureau.
Tuesday, 5 February 2008
KVN Forum meeting this evening.
The KVN Forum is the patient group giving a voice to HIV patients from the Chelsea & Westminster Kobler, Victoria clinics & Nkosi Johnson Unit.
It is the patient forum which represents me as a patient within it's patient base.
At the meeting held this evening as the "DLA Review" was on the agenda I attended for the first time mainly to contribute to this subject. I am grateful to the forum for allowing this discussion. Also it allowed members to put a face to this blog.
Further more, such was the feeling, that the KVN forum. Hopefully will make this a main agenda issue/topic for another meeting. Thanks.
If you are a patient at any of the aforementioned clinics you can join the forum from their website. Even if you cannot attend the meetings you can still contribute to your care via this forum.
A question was raised by a fellow forum member about when the change was made to the award from " For Life" to "an indefinite period". There was also confusion over whether this was a pilot still or an ongoing process.
Under the post "Various acts of Parliament" the Welfare Reform & Pensions Act 1999 (C.30) Clause 67. Sets out the change from "for life" to "an indefinite period."
For details on the review see the special rules report from the Disablilty Living Allowance Advisory Board. . Note this will download a "pdf" postscript file. Provides the background to the review.
Of course I could not post following the previous entry from my co-author with out mentioning the excellent result that gives some hope to the rest of us.
It is the patient forum which represents me as a patient within it's patient base.
At the meeting held this evening as the "DLA Review" was on the agenda I attended for the first time mainly to contribute to this subject. I am grateful to the forum for allowing this discussion. Also it allowed members to put a face to this blog.
Further more, such was the feeling, that the KVN forum. Hopefully will make this a main agenda issue/topic for another meeting. Thanks.
If you are a patient at any of the aforementioned clinics you can join the forum from their website. Even if you cannot attend the meetings you can still contribute to your care via this forum.
A question was raised by a fellow forum member about when the change was made to the award from " For Life" to "an indefinite period". There was also confusion over whether this was a pilot still or an ongoing process.
Under the post "Various acts of Parliament" the Welfare Reform & Pensions Act 1999 (C.30) Clause 67. Sets out the change from "for life" to "an indefinite period."
For details on the review see the special rules report from the Disablilty Living Allowance Advisory Board. . Note this will download a "pdf" postscript file. Provides the background to the review.
Of course I could not post following the previous entry from my co-author with out mentioning the excellent result that gives some hope to the rest of us.
Result ?
I just heard from a fellow patient at Wharfside to say that DWP have reviewed his DLA and left it intact.
He was incredibly worried about this and was one (of many?) who've been receiving extra psychological support and medication since he got the review letter a while back.
But at least this indicates that if you still qualify it looks as though the DWP are not being as harsh as they were during the Benefit Integrity Project ... or at least the adjuicator in this case was.
He was incredibly worried about this and was one (of many?) who've been receiving extra psychological support and medication since he got the review letter a while back.
But at least this indicates that if you still qualify it looks as though the DWP are not being as harsh as they were during the Benefit Integrity Project ... or at least the adjuicator in this case was.
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