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

Team Meeting this evening.

We had another team meeting tonite. I want to thank everyone who attended for giving up there free time.

The discussion went well and many issues arose which we will seek to tackle over the comming weeks.

We hope you enjoy your Easter.

Tcell.

Some happy news.

I have heard from two people who have maintained their DLA at the level it was originally awarded.

In one case from the initial letter (DBD551) to the decision following the DLA556 submission. The time frame was 5 months.

Also the polls indicate that slightly more are "staying the same" than face a change. However the number able to fill in the poll is small at the moment. Many applications are currently undergoing the review process. So please fill in the polls at it give us all a snapshot of what is happening.

Please share your stories with us as it may help others.

Jenny Willott MP

Thank you to Jenny Willott further to a previous post.

I received an email from her this afternoon. In which she acknowledged she has seen the website and this blog.

Thank you for taking the time to appraise yourself with these issues, Jenny.

John.

Rt. Hon. Lord Smith of Finsbury.

I recieved a handwritten response from Chris Smith, the Rt. Hon. Lord Smith of Finsbury this morning in the post.

It reads : "Thank you for your letter, kindly drawing my attention to your website. It certainly looks an extremely valuable resource for those affected by HIV, and I'm grateful to you for directing me to it. Good Luck for your campaigning."

I will scan it in, in due course. The website is undergoing a major overhaul at present.

Thank you to Lord Smith for his kind words & response.

MAC AIDS Fund & HIV Stigmatism

This morning the MAC AIDS Fund held a panel discussion & meeting in London attended by several well known "charities" and groups from the HIV sector. This was to present their survey data on, and have a discussion about, HIV & Stigmatism.

The survey data can be found by clicking here.

I am grateful to the MAC AIDS Fund for allowing me to attend as an observer, though under par at the moment. It was well worth attending.

For those of you who don't know who MAC are.

"Established in 1994 by M·A·C Cosmetics, the M·A·C AIDS Fund supports men, women and children affected by HIV/AIDS globally. Introducing its first VIVA GLAM lipstick that same year, M·A·C decided that every cent of the selling price of the VIVA GLAM lipsticks would go to the M·A·C AIDS Fund. With a total of six shades of Viva Glam lipstick and two shades of Viva Glam lipglass now sold worldwide, and through the annual Kids Helping Kids Card Program, M·A·C Cosmetics has provided over $100 million (US) to date for the M·A·C AIDS Fund. The M·A·C AIDS Fund is the heart and soul of the company – with its employees giving their time, energy and talent to help those affected by HIV/AIDS worldwide."

The discussion did touch briefly on poverty though not directly on the DLA issues. However the discussion went well. With many organisations that were in the audience. Raising some very salient points.

The meeting opened with a speech from Mr. John Demsey, Chairman - MAC AIDS Fund.

This was followed by a presentation of the survey data by Nancy Mahon, Senior Vice President - MAC Cosmetics & Executive Director - MAC AIDS Fund.

The survey data for me personally was very interesting in what it showed in terms of peoples perceptions around HIV.

The Panel was Chaired by Andrew Jack - Financial Times.

Panel members were

• Nancy Mahon.
• Elhadj Amadou SY - UNAIDS.
• Jane Anderson - Consultant & Director of the Centre for the Study of Sexual Health and HIV at Homerton University Hospital NHS Foundation Trust.
• Paul Gambaccini - BBC Radio.
• Steven Inman - Head of Grants & Projects Crusaid.
• Deborah Jack - CEO National AIDS Trust.
• Angelina Namiba - Policy & Involvement Manager Positively Women.

The discussion around stigmatism is important here as clearly many of the oppourtunities there are for us to contribute back to society. Have addtional barriers & hurdles because of the perception having HIV has with some of the more general population.

MAC AIDS Fund is making £250,000 availible in grants to organisations that look to tackle the issues around this in the UK.

Thank you for taking such a key role in this.

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.

Important information if you ask for a re-review or appeal

Thanks to Jim (Tcell) for raising this. Also thanks for Steve (who is a Benefits Writer & Trainer) of the Benefits & Work website for coming back so quick with an answer.

The issue was:

"If I ask for a re-review or an appeal. Could that process result in the original decision made. Being lowered or my Disability Living Allowance being removed?"

I posted this to the members forum on Benefits & Work. You may need to subscribe to get access to this.

Steve replied:

"I'm afraid the answer to your question is that when you ask for a decision to be looked at again your award can be reduced or removed altogether. That applies regardless of the nature of the decision you are asking to have looked at.

Clearly the likelihood of this happening will depend very much on what evidence there is to support the current award. It's part of a welfare rights worker's job to assess the strength of a case and advise on the degree of risk - but there will always be some."

I mention this so that you can make a considered decision if you are unhappy with the result of your review and wish to challenge it.

Also I hope you see what a valuable resource the Benefits & Work website is.

If you want to read more about the site click here.

Just to let you know ...

Further to my post Updates of Friday 14th March 2008 .

I received and email from the PA of Jenny Willott MP and Liberal Democrat member of the Select Committee for Work & Pensions.

In this email it mentions that here office is aware of our blog.

I would like to thank her & her staff for taking the time to appraise themselves of our issues.

Jenny Willott MP represents Cardiff Central. If you live within her area. You can find her web site by clicking here.

This entry is not an endorsement of any political party. I merely mention it for completeness. If you are aware of positions taken by others please add a comment with details or email me.

Posted on another forum we have elsewhere on the internet.

Someone suggested that http://www.benefitsnow.co.uk/dmakers/default.asp might be useful for people to know about.

However, like many sites on the internet. Where Disability Living Allowance is mentioned. It can mention and relate to the "Disability Handbook".

This handbook once used by Decision makers. Has been superseded by a computer based "Customer Care Management System". This system using different modelling methods.

The Disability Rights Handbook 33rd edition - April 2008 to April 2009 is available for purchase from the Disability Alliance website.

See the news articles on this at the Benefits & Work website. You may need to be a member to read these.

Benefits & Work - "New DLA 'points' system: zero for heroes - and many others"

Benefits & Work - "DLA Disability Handbook Ditched" {membership required}

You may also find the section on 'DLA resouces" on the Benefits & Work website, quite useful though you have to join the site to access it.

I just mention this to make you aware when you are surfing to other sites for information.

From Dame Carol Black, National Director for Health & Work

For your information.

A story from the BBC News Website "Ill health 'costs the economy £100bn'"


"Ill health 'costs economy £100bn'

Ill health costs the British economy over £100bn a year - the same as the cost of running the NHS for a year, a report is set to say.
The calculation will appear in an analysis by Dame Carol Black, national director for health and work.

She has been looking at ways of helping people who are sick get back to work.

Measures in the report include replacing sick notes with "well notes" stating what work somebody who may have health problems can actually do.

Dame Carol is also proposing trials of a new Fit for Work service to provide access to specialists such as physiotherapists and counsellors for all employees in the early stages of sickness.

The aim would be to take quick action to help these people stay at, or return to work.

She said doctors did not wait until a cancer patient developed secondary tumours to offer treatment - but inaction in the workplace too often allowed easily treatable, minor problems to deteriorate into something more severe.

The report will say the total cost of ill-health to the British economy is around £103bn.

The bulk of that - £63bn - is made of the benefit costs and lost taxes for people who are not working due to illness or disability.

"We know that staying in or returning to work is generally good for patient's health, whereas unemployment is progressively damaging"
Alan Johnson
Health secretary

The rest of the bill is made up the cost of the care given by family and friends, the cost to an employer of having someone absent from work and other additional costs.

Dame Carol believes whole sections of society have "drifted" into a benefits culture, with generations of the same family never working.

However, she stressed that these people were not lazy - they just needed support to get back into employment.

She said: "Often these conditions are mild, such as mild mental health and musculo-skeletal problems, such as a bad back.

"There are often treatable and preventable if we could get in there early.

"But we have nothing in place at the moment that gives us early intervention and prevention."

For instance, Dame Carol said GPs struggled to get speedy access to physiotherapy and mental health counselling services.

Well notes

Well notes set out what tasks a worker can perform instead of certificates automatically signing someone off.

Sick notes are given to those with short-term health problems, but ministers are concerned people can then "drift" into claiming incapacity benefit.

Both of the main political parties are keen to significantly reduce the number of claimants.

The proposed change is not backed by doctors, who say it is asking them to "police the system".

GPs are also likely to be expected to offer patients advice about what they can do to get fit for work.

James Purnell, Secretary of State for Work and Pensions, said working could make a "real difference" to people's health and quality of life.

Secretary of State for Health, Alan Johnson, said: "We know that staying in or returning to work is generally good for patient's health, whereas unemployment is progressively damaging."

Being unemployed could lead to problems such as more sickness, mental illness, disability, increased use of medication, higher hospital admission rates and shorter life expectancy, he added.

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/7297174.stm

Published: 2008/03/17 04:20:28 GMT

© BBC MMVIII"

Income Support. Just sharing a recent problem.

Today, in the post. My partner received a letter From the DWP "Jobcentre Plus". This followed a telephone call and supporting followup letter.

The initial problem was a change in his payment frequency. A letter was received, a few weeks ago. Stating that, as he had requested a change to the payment frequency, it was now changed. Of course, no change was ever requested.

So we telephoned them. There was some excuse given about his surname (it is hyphenated). We should point out that for the last seven years they have had his correct information. The excuse was suggesting he had just notified them of a "change of name".

Based on previous experience with the DWP. I decided to write a letter. I would advise you to always follow up a call to them with a letter. If only so an "audit" trail is created on your file, but I digress.

The response this morning blames "human" and "computer" errors.

The key bit of information and the reason for this post is :

"The initial problem arose following information downloaded to the Income Support (IS) Computer System from the Disability Living Allowance (DLA) Computer system. The DLA system currently holds your name correctly as a hyphenated surname, the IS system will not allow the name to be hyphenated. This resulted in your Income Support claim being suspended, incorrectly.

When Income Support was put back into the payment the computer system faulted and initially payments had to be made weekly."

This explaination completely different & much fuller than the initial phone call. We didn't know until this his benefit had been suspended.

I post this to show how the computer systems work. The potential problems that might arise. If you have a hyphenated surname "forewarned is forearmed".

On the DLA front. Further to previous posts. We are both still waiting to hear back from the DWP.

Updates.

Well, Budget Day this week has started the debate on the Employment & Support Allowance. It has allowed us to get some idea of what, the powers that be, plan for those on Incapacity Benefit.

We have some more support from some well known faces. The last to sign was June Brown and the number of signatures continues to grow on the RPP petition.

Two weeks ago I emailed -MP’s & members of the W&P select committee. Vince Cable, Diane Abbott, David Cameron Ming Campbell, Jeremy Corbyn, Frank Dobson, Alan Duncan, Angela Eagle, George Galloway, Greg Hands, Glenda Jackson, Stephen Timms, Keith Vaz, Anne McGuire, Terry Rooney, Anne Begg, Harry Cohen, Michael Foster, Oliver Heald, Joan Humble, Tom Levitt, Greg Mulholland, John Penrose, Mark Pritchard, Jenny Willott.

I have had no response. I note that this week our issues have been picked up by the wider Budget debate, by some of the above. Am a great believer in "nothing ventured nothing gained" and doing something is better than not even trying.

I wrote to THR's Princes William & Harry. Prince Harry is very involved with HIV/Aids in Lesotho. I have received a response and will upload it to documents on the main web page.

The team, Tcell, is getting more organised. Working in the background to raise the profile of our issues. Thanks. More soon.

My partner is working on a new website to include this blog & forums. If there is anything you would like to see. Please email me. This is as much your resource as ours.

The GL 24 form from the DWP on how to appeal a benefit decision was added to Documents. Please read it it covers the route of appeals for all benefits and may prove useful elsewhere.

Note the responses to the polls, to gauge the picture of how this is affecting people. Thank you to all who have taken the time to vote & help with this data collection.

I note that of the 11 "votes" cast on the poll "I have had a decision on my DLA and.." - 5 people say it has stayed the same with 4 reporting a change.

Thank you to all who read this. I hope it helps. Thanks to all those who email & comment, sharing there experiences with us all.

Terry Rooney MP mentioned today

Mr. Terry Rooney MP is the Chairman of the Work & Pensions Select Committee. You can find out some more information on him by clicking here. You will be aware I have written to him in the past.

I caught this by way of an interview on BBC News 24 with Aidan Hargitt of The Royal Association for Disability & Rehabilitation.

Though he spoke in the context of Incapacity Benefit & the incoming Employment & Support Allowance.

Mr Hargitt mentioned that Terry Rooney MP spoke in the House of Commons today. He mentioned that a recent survey showed that 70% of employers would not shortlist a candidate with a history of mental health problems.

{added 14th March 2008. you can read this debate by clicking here - you need to scroll down to this point.}

He did point out that those with "invisible impariments are liable to be most affected by any political drives to get people off Incapacity Benefits. Then this is very worrying. Because a 70% figure would suggest that there are many people out there who want to work but cannot" because of this barrier.

He went on to say that mental health problems are on the increase. That employers had undertaken some actions to deal with the issues raised but there was more work to be done.

As many people in DLA also claim Incapacity Benefit I thought this was worth posting for general information purposes.

We should be encouraged by organisations within the Disabled Community. Taking every oppourtunity to raise the common issues we all face.

You might also be interested in this story from the Times Online "Whitehall cannot afford to pay for incapacity benefit tests, say Tories"

This entry is not an endorsement of any political party. I merely mention it as some may not have caught the story. If you are aware of positions taken by others please add a comment with details or email me.

Vince Cable, Treasury, Liberal Party - BBC News 24 today

From an interview with Vince Cable, Treasury, Liberal Party. On BBC News 24, concerning Incapacity Benefit.

You may also be interested in this story on the BBC News website - click here.

"He is calling for Support, and a flexible approach to those on Incapacity Benefit & "invalidity benefit". He mentions a "flexible" approach, needed to help people get back to part time work so that they are not penalised.

He picked up on the Mental Health issues.

He raised the issue of the medical tests. Over riding the judgements of GP's. People working to quota's as they already do for some of the disability benefits. Trying to get people off the lists but not actually solving the problem.

He was asked if it was his "gut instinct" or "worry" that this was just a ways of saving money.

He replied that it was. Though he acknowledged that some money could be saved. But that you have to "invest" to "save". That the money had to go in to help people that are disabled especially those with mental health issues.

He also said there were no short cuts here. That this wasn't going to happen quickly or easily."

I did email Mr. Cable as part of a cross party email I sent out about our issues. I have had no response. However his response above clearly indicates he is very aware of the problems we as part of the disabled community are facing.

This entry is not an endorsement of any political party. I merely mention it as some may not have caught the story. If you are aware of positions taken by others please add a comment with details or email me.

Budget Day.

Today is Budget Day. It's very much the lead story on all UK based news channels.

You can get a copy of the full Budget Report (222 pages as a .pdf) from the BBC website by clicking here.

This will open a new page or attempt to download the document to your computer.

There is some information within this document relating to the introduction of the Employment & Support Allowance (EAS) that is replacing Incapacity Benefit, Income Support & Jobseekers Allowance in October 2008.

Most notable from section 4.5 page 59,

"To ensure this increased work focus benefits current as well as future claimants,
from April 2010 all incapacity benefits claimants who started their claim before October
2008 will be required to take the Work Capability Assessment."

At the moment if you are subject to an " exemption due to "that he/she is in receipt of the highest rate care component of disability living allowance"..". With regard to an Incapacity Benefit Claim. Click here for a previous post on IB. It is not clear if this will continue when the EAS is introduced.

If you receive the "personal care component" at a lower rate, by April 2010. It is not clear How DLA interacts with this. I will try and get an answer. If however you are able to shed more light on this please email me or comment to this post.

Doing a search, not exhaustive, I found the following interesting:

Search using the key word "Disabled"

Page 57 - Section 4 (4.2, 4.3, 4.4, 4.5, Table 4.1 ,4.13, 4.14, 4.36 : Page 97 section 6.31 : Page 115 table A.22)

Search using the key word "Disability Living Allowance"

Page 136 Table A 3.1.

By all means look through it for yourself. If I have missed something please add a comment.

"Forewarned is forearmed"

DWP "If you think our decision is wrong" Form GL24 DWP

If you are looking to understand what avenue's are open to you. Should you wish to appeal a decision for any benefit.

The Department for Work & Pensions (DWP) have a information leaflet & form (GL24 DWP) that is available from the Jobcentre website.

For ease of access. You will also find this doument. In .pdf format. In the Documents section of the main website.

BBC News website "HIV 'hides from drugs for years'"

FYI : you maybe interested in this story from the BBC news website today.

" BBC NEWS
HIV 'hides from drugs for years'
HIV can survive the apparently effective onslaught of antiviral drugs for years by hiding away in the body's cells, research shows.

The US National Cancer Institute found low levels of dormant HIV in patients seven years after they started - and responded well to - standard therapy.

The finding confirms patients must take drugs indefinitely, and that any break runs the risk of rekindling infection.

The study features in Proceedings of the National Academy of Sciences.

People with HIV need to take treatment indefinitely because current drugs cannot reach this pool of dormant virus
Keith Alcorn
NAM

The researchers followed 40 patients infected with HIV for seven years.

Doctors do not usually record infection levels once the number of HIV particles falls below 50 per ml of blood.

However, the NCI team used highly sensitive equipment to measure infection levels below this threshold.

They found that the virus was still present at low levels in 77% of the patients.

The research suggests that although potent antiretroviral therapy can suppress HIV infection to almost undetectable levels, it cannot eradicate the virus.

Renewed risk

The researchers said that even though levels of the virus that remain are low, they are high enough to rekindle infection if treatment is interrupted.

The risk of infecting others is low, but cannot be ruled out.

They believe HIV may be harboured by CD4+ cells, which play a role in the immune system.

These cells are most likely infected before therapy was initiated and the amount of virus they produce is small.

Researcher Dr Sarah Palmer said: "It is extremely important that new drugs are developed to eradicate HIV infection as the side effects associated with long-term HIV treatment can be severe."

She also warned that failing to take prescribed medication raised the risk that HIV could begin to develop resistance, rendering future treatment less effective.

Keith Alcorn, of the HIV information service NAM, said scientists were looking at approaches to treatment that could flush out HIV from cells.

He said: "This research shows that, for the time being, people with HIV need to take treatment indefinitely because current drugs cannot reach this pool of dormant virus.

"If treatment stops, this pool of virus provides the basis for a rapid rebound in virus levels."

Mary Lima, a treatment advisor at the HIV charity Terrence Higgins Trust, said: "This study only highlights the complexity of HIV and why it's so difficult for us to find a cure.

"It's important we find out as much as possible about how HIV acts over long periods of time, so we can continue to develop new treatment strategies to tackle it.

In order to keep people with HIV well for longer, we need to attack the virus at all stages."
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/7287792.stm

Published: 2008/03/11 08:03:14 GMT

© BBC MMVIII"

Freedom Passes.

Just to raise this as many are facing a renewal.

Whereas the first source of information should be your local council.

You may be interested in the Freedom Pass website run on behalf of all local councils

There are some "dead links" on this site and I have emailed them. Also I found myself being cut off before I could get to talk to someone. Just be aware if you call them.

It is worth noting that

"Q. I have a disability, can I apply for a freedom pass?

A. Disabled freedom passes are issued through your local borough council - contact them to apply. The councils follow the criteria set out by the Transport Act 2000 which outlines the 7 catagories of disability used to assess eligibility for a freedom pass.

Local councils may at their discretion issue passes to disabled people that do not meet these criteria. For further details see the Department for Transport website."

this found on this website by clicking here.

Are you a member of a Trade Union

Thanks to Nigel, one of my Tcell colleagues for this. (the power of team work)

You may be a retired member of a Trade Union. Only you will know your membership status. Call them. They may still be able to help you. As a member albeit (retired) you still have access to the services of your Union. They may also have a "hardship fund" that you may be able to access.

Also if you consider work. Worthwhile joining a Trade Union to get the protections is affords. Trade Unions will only deal with issues you face after you have joined them by the way. There may also be a qualifying period before support is given. Check with the union directly.