Emailed to me for inclusion here this can also be found at http://mark1-hivdla.blogspot.com/
"To everybody who may find this interesting or indeed helpful
i just wan't to say a big thank you for starting this site , i have found it
very useful and informative .
I will tell my story but try and keep it shortish , though thats quite
difficult compressing 22 years of ones life into a few lines , I'm a long
term survivor of HIV/AIDS I was diagnosed when i was 25 in 1986 which seems
like a lifetime ago , and i can hardly remember a time when i wasn't HIV +
If i cold have chosen a different life then i certainly would have done , i
would really like to think it hasn't controlled my life , but deep down i
know it has .
I was awarded DLA in 1996 with probably about six months to live i had a very
low CD4 count and a lot of KS lesions on my body amongst other infections ,
at this point i was still working (3 days a week ) god knows how, i used to
fall asleep at work on a regular basis .
it was around that time that i started on the endless drug trials which of
course i remain on to this day , my blood counts became better and i
continued working until 2001 when even though my my CD4 count was reasonably
high and my viral load non detectable i got another AIDS defining illness
just to beat me back down again , after being miss diagnosed with tonsillitis
for 4 months and endless amounts of antibiotics i was seen as an emergency
patient at st thomas
where i was diagnosed with non hodgkins lymphoma (cancer) they gave me a 25 %
chance of survival and i had chemotherapy for a year at this point i had to
stop work and have not worked since . i was a very successfull hairdresser
and got to the top of my profession having had to have a year off
i count on my DLA to live on these days along with income support and i'm not
sure how i'll manage without it my doctor was very understanding when i told
him about the review and told me to write my own letter and in explaining my
condition /disability and how it effects me etc . i don't think the
"decision maker" should base his decision on blood counts because they
certainly have had little bearing on the infections and illness's i
personally have had .
i was once told by a leading HIV doctor that your immune system isn't the
same once its been compromised
just to say thanks for reading this , hope the spelling wasn't to dreadful
i await the brown envelope"
Showing posts with label Shared experience. Show all posts
Showing posts with label Shared experience. Show all posts
Sunday, 6 April 2008
Tuesday, 1 April 2008
Some good news.
Please click here to read some good news on a previous posting.
You will need to access the comments to see the result the lady has received following here review.
You will need to access the comments to see the result the lady has received following here review.
Monday, 31 March 2008
Over the weekend I heard ....
Over the weekend I heard of another successful decision. Though this did go all the way through to the person having to complete a DLA556.
Whereas it is still difficult to gauge the fuller picture with so many still in the process. I would like to think that the work done by the team here & those in the background is making a positive difference.
Please let us know how you are getting on. It helps to build the bigger picture.
Remember everyones case is different. A decision that on person gets depends on their personal situation and may not necessarily apply in your case.
Whereas it is still difficult to gauge the fuller picture with so many still in the process. I would like to think that the work done by the team here & those in the background is making a positive difference.
Please let us know how you are getting on. It helps to build the bigger picture.
Remember everyones case is different. A decision that on person gets depends on their personal situation and may not necessarily apply in your case.
Thursday, 27 March 2008
Shared Experience.
Here is another shared experience. This was sent to in response to the request from Positive Nation for comments on this review a few weeks ago.
Thank you for allowing us to publish this here, also. So we can all share your experience & views.
Sam wrote,
"In common with thousands of other special rules claimants I am currently undergoing a review of my entitlement to DLA. Hundreds such as myself are in a state of acute anxiety and extremely fearful for our future health and circumstance.We have been, at best, poorly represented by the disability organisations empowered with our advocacy and at worst cynically failed by collusive or passive responses to govt. policy and propaganda emerging from the DWP. I have watched with disgust as the publishing and broadcast media have drip-fed a sustained weekly diet of stories, over the past 2 years in particular, of benefit cheats and frauds to the point where all those with disabilities are unchallengingly thus characterised. There is and has always been a resentment of those receiving welfare state benefits and a propensity to envy at our supposed champagne lifestyle, whilst lounging feet - up in front of daytime TV! I suspect we'd all need to be quadraplegic in order to identify as "genuinely" disabled. Our presumed state provided wealth another fiction grasped from the ether.I should like to point out that my own annual income of around £10K enables me to manage my living costs at a level 2/3 below my previous earnings when employed! Moreover the vindictive and distorted rhetoric of successive Secretaries of State charged with the DSS / DWP brief, have apparently engaged, with complete impunity, in a well-orchestrated and successful campaign via their press offices,and slavishly repeated not just by the tabloids but the "discerning" broadsheets and television and radio newscasters, which has cynically reinforced that public perception, with little or no counterpoint.
Where have THT been during this period of sloganeering and stereotyping? Alan Johnson cites evidence that work is good for health while the absence of work is deleterious to our health. "Most" disabled people want to work they declare, and of course the Disability Discrimination Act has made all of that possible the propaganda assures us! David Freud's advice to Government meanwhile is that our own physicians' evaluations of our health should be ignored in favour of that of medical stooges contracted by the DWP and tasked with reducing claimant numbers. Investment bankers are of course the definitive arbiters of all determinants of medical health and what constitutes disability.
THT grew from small beginnings with a brief that depended on the condition many of us have survived long- term, viz. HIV .They have subsumed the many autonomous self-help initiatives across the country to become a monolithic HIV organisation peopled by conferencing careerists, cosying and colluding with the Govt departments that are undermining the safety, health and well-being of all those currently living in terror of their futures. THT state on their website that they are working with the DCS to ensure the reviews are carried out as "sensitively"as posible. Anyone with experience of dealing with the DWP and the newly contracted private agencies knows that this is sophistry- they are a target driven machine who act summarily and arbitrarily, relying on the demoralised and bewildered claimants' exhaustion to deter them from pursuing matters to appeal. Incidentally what is THT's position on the governments plans to tamper with the appeals process in order to limit the number of successful appellants? ( whoops! I mean to make the process speedier and fairer!)
I live in the West of Scotland and the review came without warning (apart from my own longstanding anxiety that this would be in the pipeline). The DWP needed to attack higher rates of the care component of DLA for claimants if they were to also review their Incapacity Benefit entitlement , from which claimants were /are presently exempt.THT and other Disability organisations were forewarned of, and consulted about the DLA reviews but seemingly left claimants at the mercy of an unpublicised agenda.For many outside London support and advocacy is less easily accessed,indeed many are too frightened to do more than sit in miserable introspection whilst events overtake them and I know in my own case a sense of helplessness and powerlessness are predominant.
The assumption that long term survivors of HIV/AIDS or other individuals with disabilities due to different illnesses, are now fit and well enough to be subjected to work focused interviews and ultimately coerced back to a world of work which they may very likely be unable to sustain is appalling.Many of us affected by HIV/AIDS live with currently stable CD4 counts/Viral loads but still with disabling conditions. What are these organisations doing to remind government of the glaring holes in our pensions should we actually reach 65 and after stripping us of our current financial support ? Furthermore, if entitlement to free prescriptions /dental care is removed, as the dominoes fall, many face a choice of finding money they don't have to pay for scripts (only our HIV drugs are provided via our Hospital clinics) in my case this is about 25 items per month currently provided free!
When completing my review form I listed 13 separate conditions but I don't imagine the jobsworths at the DWP will do more than glance at a table of (revised) listed conditions which declare" variable" or "not usually disabling"or "progressive with poor response to treatment" before arriving at an ill-informed conclusion.Or conclude that a CD4 count above 200 means we're all hunky - dory, despite however many combination therapies have gone before, or what side effects and present disabilities are lived with; if you can stand upright you can work!
So congratulations to an agitating voice in the wilderness in the shape of John john@hivbenefits.co.uk and his TCell campaign, a little light in the darkness. And shame on you THT! You should be reminding the government of it's responsibilities to the vulnerable while members of both the House of Commons and Lords squander vast amounts on claims for travelling 1st class by train and air, by taxis,,for staffing expenses and mortgage interest payments on second homes, while those on Income support, if eligible for a community care grant at all, receive allowances guided by costings from an Argos catalogue.These very same honourable members receive payments in keeping with their rarefied status based on the costings of a John Lewis catalogue.
The political parties all nestle safely on the right of centre, and all, aside from those left wingers viewed as anachronistic by their colleagues, support the ever more draconian welfare reforms. We are up against currently one of the most extreme enacters of this in the shape of James Purnell, with his rictus grin and "THREAT" that " for those who do not play by the rules THERE WILL BE CONSEQUENCES !" The disability organisations seem conspicuously silent, like rabbits frozen in headlights waiting for this government "Elmer Fudd" to blast them! 5 Secretariies of State in the past 10 years! And aside from Andrew Smith, all burning with Blairite fury and fervour.while they dismantle welfare provision with unholy Thatcherite zeal.You know it makes sense!
I think it fair to say that a good number of us ,if not a majority, who are undergoing this nightmare exercise feel abandoned .There are too few to stop this particular oncoming train without the support of other voices raised on our behalf. The government has a massive pensions black-hole to fill and a leaky economy with no cash reserves though we remain one of the richest countries in the western world. An indicator of a countries values and morality is how it cares for it's more vulnerable members. We are an easy and fairly defenceless target despised for our "dependency". "Arbeit Macht Frei" indeed, if it doesn't accelerate your demise!"
Thanks to everyone who contributes their comments & stories.
Thank you for allowing us to publish this here, also. So we can all share your experience & views.
Sam wrote,
"In common with thousands of other special rules claimants I am currently undergoing a review of my entitlement to DLA. Hundreds such as myself are in a state of acute anxiety and extremely fearful for our future health and circumstance.We have been, at best, poorly represented by the disability organisations empowered with our advocacy and at worst cynically failed by collusive or passive responses to govt. policy and propaganda emerging from the DWP. I have watched with disgust as the publishing and broadcast media have drip-fed a sustained weekly diet of stories, over the past 2 years in particular, of benefit cheats and frauds to the point where all those with disabilities are unchallengingly thus characterised. There is and has always been a resentment of those receiving welfare state benefits and a propensity to envy at our supposed champagne lifestyle, whilst lounging feet - up in front of daytime TV! I suspect we'd all need to be quadraplegic in order to identify as "genuinely" disabled. Our presumed state provided wealth another fiction grasped from the ether.I should like to point out that my own annual income of around £10K enables me to manage my living costs at a level 2/3 below my previous earnings when employed! Moreover the vindictive and distorted rhetoric of successive Secretaries of State charged with the DSS / DWP brief, have apparently engaged, with complete impunity, in a well-orchestrated and successful campaign via their press offices,and slavishly repeated not just by the tabloids but the "discerning" broadsheets and television and radio newscasters, which has cynically reinforced that public perception, with little or no counterpoint.
Where have THT been during this period of sloganeering and stereotyping? Alan Johnson cites evidence that work is good for health while the absence of work is deleterious to our health. "Most" disabled people want to work they declare, and of course the Disability Discrimination Act has made all of that possible the propaganda assures us! David Freud's advice to Government meanwhile is that our own physicians' evaluations of our health should be ignored in favour of that of medical stooges contracted by the DWP and tasked with reducing claimant numbers. Investment bankers are of course the definitive arbiters of all determinants of medical health and what constitutes disability.
THT grew from small beginnings with a brief that depended on the condition many of us have survived long- term, viz. HIV .They have subsumed the many autonomous self-help initiatives across the country to become a monolithic HIV organisation peopled by conferencing careerists, cosying and colluding with the Govt departments that are undermining the safety, health and well-being of all those currently living in terror of their futures. THT state on their website that they are working with the DCS to ensure the reviews are carried out as "sensitively"as posible. Anyone with experience of dealing with the DWP and the newly contracted private agencies knows that this is sophistry- they are a target driven machine who act summarily and arbitrarily, relying on the demoralised and bewildered claimants' exhaustion to deter them from pursuing matters to appeal. Incidentally what is THT's position on the governments plans to tamper with the appeals process in order to limit the number of successful appellants? ( whoops! I mean to make the process speedier and fairer!)
I live in the West of Scotland and the review came without warning (apart from my own longstanding anxiety that this would be in the pipeline). The DWP needed to attack higher rates of the care component of DLA for claimants if they were to also review their Incapacity Benefit entitlement , from which claimants were /are presently exempt.THT and other Disability organisations were forewarned of, and consulted about the DLA reviews but seemingly left claimants at the mercy of an unpublicised agenda.For many outside London support and advocacy is less easily accessed,indeed many are too frightened to do more than sit in miserable introspection whilst events overtake them and I know in my own case a sense of helplessness and powerlessness are predominant.
The assumption that long term survivors of HIV/AIDS or other individuals with disabilities due to different illnesses, are now fit and well enough to be subjected to work focused interviews and ultimately coerced back to a world of work which they may very likely be unable to sustain is appalling.Many of us affected by HIV/AIDS live with currently stable CD4 counts/Viral loads but still with disabling conditions. What are these organisations doing to remind government of the glaring holes in our pensions should we actually reach 65 and after stripping us of our current financial support ? Furthermore, if entitlement to free prescriptions /dental care is removed, as the dominoes fall, many face a choice of finding money they don't have to pay for scripts (only our HIV drugs are provided via our Hospital clinics) in my case this is about 25 items per month currently provided free!
When completing my review form I listed 13 separate conditions but I don't imagine the jobsworths at the DWP will do more than glance at a table of (revised) listed conditions which declare" variable" or "not usually disabling"or "progressive with poor response to treatment" before arriving at an ill-informed conclusion.Or conclude that a CD4 count above 200 means we're all hunky - dory, despite however many combination therapies have gone before, or what side effects and present disabilities are lived with; if you can stand upright you can work!
So congratulations to an agitating voice in the wilderness in the shape of John john@hivbenefits.co.uk and his TCell campaign, a little light in the darkness. And shame on you THT! You should be reminding the government of it's responsibilities to the vulnerable while members of both the House of Commons and Lords squander vast amounts on claims for travelling 1st class by train and air, by taxis,,for staffing expenses and mortgage interest payments on second homes, while those on Income support, if eligible for a community care grant at all, receive allowances guided by costings from an Argos catalogue.These very same honourable members receive payments in keeping with their rarefied status based on the costings of a John Lewis catalogue.
The political parties all nestle safely on the right of centre, and all, aside from those left wingers viewed as anachronistic by their colleagues, support the ever more draconian welfare reforms. We are up against currently one of the most extreme enacters of this in the shape of James Purnell, with his rictus grin and "THREAT" that " for those who do not play by the rules THERE WILL BE CONSEQUENCES !" The disability organisations seem conspicuously silent, like rabbits frozen in headlights waiting for this government "Elmer Fudd" to blast them! 5 Secretariies of State in the past 10 years! And aside from Andrew Smith, all burning with Blairite fury and fervour.while they dismantle welfare provision with unholy Thatcherite zeal.You know it makes sense!
I think it fair to say that a good number of us ,if not a majority, who are undergoing this nightmare exercise feel abandoned .There are too few to stop this particular oncoming train without the support of other voices raised on our behalf. The government has a massive pensions black-hole to fill and a leaky economy with no cash reserves though we remain one of the richest countries in the western world. An indicator of a countries values and morality is how it cares for it's more vulnerable members. We are an easy and fairly defenceless target despised for our "dependency". "Arbeit Macht Frei" indeed, if it doesn't accelerate your demise!"
Thanks to everyone who contributes their comments & stories.
Thursday, 20 March 2008
This was posted as a comment but deserves an entry
"Hi to everyone,Im a hiv women age 38, i was diagnosed in 1989...19 yrs ago..to cut a long story short, i am also being reviwed..im currently in reciept of high rate care dla and high rate mobilility dla, when i was 19, i got the benefit straight away via special rules..the last 8 weeks have been very stressfull to say the least..and i have been very depressed and worried that i wont be able to cope if they take my benefit off me...i also feel that i have been made to look like a benefit cheat..which i am certainly not..what i would give to be hiv negertive and have a job( i used to be a hairdresser) i would be getting more money working that's for sure...i have been on every hiv drug going...and there are not many ,more options available to me now..im on a trial drug at the moment...anyway i filled in the dla form..but they was'nt happy with that they also wanted to come out to see me for a medical examination..anyway she came out on wensday, she asked me a few questions about the care i need..i have lipodytrophy wasting, kidney problems, muscel weakness...and mental health probs..that goes with being a long term surviver..anyway all she seemed to be interested in is how i aqquired the virus, she didnt ask me any questions what im like outdoors..she also tried to put words in to my mouth by saying you can turn in bed without help..i pulled her up on it( and told her i felt that she was putting words into my mouth, and know i cant move properly by myself in bed as i have a buffelo hump on my back..she didnt look at the hump..i got the impression she didnt want to touch me..anyway i feel its a disgrase the way longterm survivers are being treated..i would like them to live just 1 week of my life and see how it bloody feels..they havent got a clue...they are just looking at blood results, my blood results are good but i feel like crap most the time due to the side effects of the meds... long term survivers really need to pull together and fight for our writes, sadly those who fought for our writes in the early eighties mostly gay men..are no longer with us..i feel like we are being trampelled all over and nobody as any compassion for hiv people...im sick of hereing..its no worse than being a diabetic( bullshit) this disease can still kill..THERE IS KNOW KNOWN CURE FOR THIS GOD FORSAKEN ILLNESS)if my meds stopped working, i have become resistant to most..i would proberly die in 6 months as there are not going to be any options for me...this as become a nightmare with the added threat i will loose my benefit..and would have to survive on income support alone...does anyone know how long it takes after the medical examination for them to make a disision?..im very stressed out worrying about it..i dont feel like they are not looking at the full picture of somone living with this virus and the damaging effects it as on the body and mind...and the stigma( what employee would hire somone if they knew they was hiv posititve) not many i can tell you.most people who are fortunate to work, are in the closet about there status. "
I would like to thank the person who posted this comment for taking the time to let us all know her story. It cannot have been easy and I salute your courage. I felt your entry deserved more prominence I hope you do not mind. Please feel free to email me - john@hivbenefits.co.uk
I would like to thank the person who posted this comment for taking the time to let us all know her story. It cannot have been easy and I salute your courage. I felt your entry deserved more prominence I hope you do not mind. Please feel free to email me - john@hivbenefits.co.uk
Tuesday, 18 March 2008
Medical Examinations.
I have decided to highlight a comment to a previous post on this.
"Anonymous said...
Can someone give advice about medical examinations under the DLA review.
Some of what I read seems to suggest that if you are receiving the higher rate of DLA (originally granted under Special Rules) then you do not have to undertake a medical.
Can anybody clarify this situation please?"
See the guidance on the Governments Directgov website
Of particular note is,
"Medical examinations when you're already getting DLA
Receiving the right amount of benefit - 'Right Payment Programme'
If you're already receiving Disability Living Allowance, you may be asked to attend a medical examination as part of the Right Payment Programme.
Under the Right Payment Rrogramme, any Disability Living Allowance award may be reviewed to make sure the person is receiving the right amount of benefit.
If you receive an enquiry form, don't worry, your current benefit award will only be changed if the review highlights a change in your current entitlement. If this happens, your award will be adjusted accordingly - this could be up or down. If there are no material changes, your award will remain the same as before.
Renewal claims and reviews
If you've been awarded Disability Living Allowance for a fixed period, you will have to make another claim to renew your benefit just before your entitlement ends. This is called a 'renewal claim'. Renewal claims are treated exactly the same as new claims, so you may be asked to attend a medical examination.
If your benefit award is for an indefinite period, you will not usually have to make a renewal claim. However, indefinite awards can sometimes be reviewed and you may need to have another medical examination as part of the review."
I hope this answers the originators question fully. Thanks for raising this key point.
"Anonymous said...
Can someone give advice about medical examinations under the DLA review.
Some of what I read seems to suggest that if you are receiving the higher rate of DLA (originally granted under Special Rules) then you do not have to undertake a medical.
Can anybody clarify this situation please?"
See the guidance on the Governments Directgov website
Of particular note is,
"Medical examinations when you're already getting DLA
Receiving the right amount of benefit - 'Right Payment Programme'
If you're already receiving Disability Living Allowance, you may be asked to attend a medical examination as part of the Right Payment Programme.
Under the Right Payment Rrogramme, any Disability Living Allowance award may be reviewed to make sure the person is receiving the right amount of benefit.
If you receive an enquiry form, don't worry, your current benefit award will only be changed if the review highlights a change in your current entitlement. If this happens, your award will be adjusted accordingly - this could be up or down. If there are no material changes, your award will remain the same as before.
Renewal claims and reviews
If you've been awarded Disability Living Allowance for a fixed period, you will have to make another claim to renew your benefit just before your entitlement ends. This is called a 'renewal claim'. Renewal claims are treated exactly the same as new claims, so you may be asked to attend a medical examination.
If your benefit award is for an indefinite period, you will not usually have to make a renewal claim. However, indefinite awards can sometimes be reviewed and you may need to have another medical examination as part of the review."
I hope this answers the originators question fully. Thanks for raising this key point.
Tuesday, 4 March 2008
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.
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
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 !
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.
Thursday, 14 February 2008
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
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.
Wednesday, 30 January 2008
A shared experience - Thank you.
Though this was posted as a comment on the previous post. I didn't want it to be hidden so have copied it here for easy of access. Thank you to the sender.
"Hi there,
very interested to find your blog as I have just spent the whole day surfing for info re the same situation for my partner.
He has been positive for 22 years, was awarded DLA for life when he was severely ill in '97 with AIDS. He was lucky at the time, he was one of the first group of patients put on a combination therapy trial and survived.
He subsequently suffered from Non-Hodgkin's Lymphoma where there is a 40/60 chance of survival and survived, after 6 months of chemo.
He also suffered from KS.
He is now treatment exhausted, on efivarenz with all its lovely side-effects, mood swings, depression, occasional hallucinations etc. and Fuzeon's T20 which has quite literally saved his life a 3rd time.
He suffered chronic muscle wastage whilst on chemo for NHL and is not really able to work.
He was a top flight hair stylist for a west end salon by trade.
Got "made redundant" by his employer whilst recovering from cancer.
There are doubtless many law suits there but hey!
He suffers from lipidostrophy, neuropathy, muscle pain and is unable to stand or sit for any great length of time.
Additionally, he simply doesn't have the physical energy to lead the average person's life.
He cannot concentrate on a book for more than 3 chapters so how he would access further learning to retrain is a mystery.
He certainly cannot cope with going back to a full time career as a hairdresser.
He can't feel the ends of his fingers properly and so cannot hold a pair of scissors to cut....
He's not exactly academic, physical labour is out, so one wonders what he could actually do to earn a living if his DLA is withdrawn.
We have recently had the joy of the DWP letter which has sent him into a panic.
I too subscribe to the "no news = good news" idea but am concerned.
I've just been made redundant 4 days ago so supporting us both from 1 salary is going to be impossible.
His consultant at St Thomas' has been very helpful. He's made us aware that he's been inundated with requests for medical information from DWP. Seemingly everyone with a blue badge is under scrutiny.
Now, as my partner was given 3 months to live at the time of his life-time award, it could be argued that his circumstances have improved, if you are to interpret the letter of the law literally.
We have been told to be quite methodical in the letter we are going to send to his consultant and other physicians attending.
Essentially, one needs to provide a complete medical history charting all/any diagnostic sequences. Treatment history and any side effects need to be included, effects on one's ability to live "a normal life" need to be explained including mobility & mental health.
Finally, some allusion to prognosis has to be made.
In reality, my partner will be lucky to survive another decade, it's unlikely he'll make it to the DLA cut off age-65, so one hopes some bored official in a badly decorated office in Blackpool isn't rushing home to watch the X factor and is bothered!
Anyone out there who has had a DLA review for a life-time award and has received their results, please post.
I am going to be contacting what's left of the gay press to see if anyone is prepared to at least commission an article on this issue as it affects quite a large proportion of the older community."
"Hi there,
very interested to find your blog as I have just spent the whole day surfing for info re the same situation for my partner.
He has been positive for 22 years, was awarded DLA for life when he was severely ill in '97 with AIDS. He was lucky at the time, he was one of the first group of patients put on a combination therapy trial and survived.
He subsequently suffered from Non-Hodgkin's Lymphoma where there is a 40/60 chance of survival and survived, after 6 months of chemo.
He also suffered from KS.
He is now treatment exhausted, on efivarenz with all its lovely side-effects, mood swings, depression, occasional hallucinations etc. and Fuzeon's T20 which has quite literally saved his life a 3rd time.
He suffered chronic muscle wastage whilst on chemo for NHL and is not really able to work.
He was a top flight hair stylist for a west end salon by trade.
Got "made redundant" by his employer whilst recovering from cancer.
There are doubtless many law suits there but hey!
He suffers from lipidostrophy, neuropathy, muscle pain and is unable to stand or sit for any great length of time.
Additionally, he simply doesn't have the physical energy to lead the average person's life.
He cannot concentrate on a book for more than 3 chapters so how he would access further learning to retrain is a mystery.
He certainly cannot cope with going back to a full time career as a hairdresser.
He can't feel the ends of his fingers properly and so cannot hold a pair of scissors to cut....
He's not exactly academic, physical labour is out, so one wonders what he could actually do to earn a living if his DLA is withdrawn.
We have recently had the joy of the DWP letter which has sent him into a panic.
I too subscribe to the "no news = good news" idea but am concerned.
I've just been made redundant 4 days ago so supporting us both from 1 salary is going to be impossible.
His consultant at St Thomas' has been very helpful. He's made us aware that he's been inundated with requests for medical information from DWP. Seemingly everyone with a blue badge is under scrutiny.
Now, as my partner was given 3 months to live at the time of his life-time award, it could be argued that his circumstances have improved, if you are to interpret the letter of the law literally.
We have been told to be quite methodical in the letter we are going to send to his consultant and other physicians attending.
Essentially, one needs to provide a complete medical history charting all/any diagnostic sequences. Treatment history and any side effects need to be included, effects on one's ability to live "a normal life" need to be explained including mobility & mental health.
Finally, some allusion to prognosis has to be made.
In reality, my partner will be lucky to survive another decade, it's unlikely he'll make it to the DLA cut off age-65, so one hopes some bored official in a badly decorated office in Blackpool isn't rushing home to watch the X factor and is bothered!
Anyone out there who has had a DLA review for a life-time award and has received their results, please post.
I am going to be contacting what's left of the gay press to see if anyone is prepared to at least commission an article on this issue as it affects quite a large proportion of the older community."
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