Hivbenefits.co.uk - Blog. ( a Tcell campaign )

This blog has moved.

2008-05-06T11:31:00.005+01:00

Blogger has been a useful way of starting to get our message across and sharing our experience.

Moving forward. New posts will only be made to the blog on our main website - www.hivbenefits.co.uk

We welcome you to the new site. It has a search feature that should help you to find the information more readily.

John.

New letter for you to send to your Member of Parliament (MP)

2008-05-06T11:28:00.000+01:00

We have updated the letter you can send your MP - click here. Even if you have written before please continue to raise this issue, especially relevant in the current climate.

You can find your MP by typing your post code in to this website.

"Is Labour abolishing illness"

2008-05-05T13:35:00.002+01:00

Picked up from the Benefits & Work website forums I thought is was worth highlighting this article - "Is Labour abolishing illness"- from The New Statesman for all visitors here to read.

Written by "Alison Ravetz is a professor emeritus of Leeds Metropolitan University who writes on housing policy and welfare reform"

The article can be found at http://www.newstatesman.com/200805010024

Now is the time to write to your MP especially if the seat is marginal

2008-05-05T13:27:00.000+01:00

If you claim any benefit now. Given the current political climate where the government maybe more receptive to the issues you face. It is a good idea to remind your MP of the issues you face living with HIV.

If you don't claim any benefits at the present time. What is being allowed to happen today. May affect you in the future should you find yourself in the situation where you need to claim for benefits.

Either way, please write to your local MP if only to raise the issues facing all of us who live with this illness. Problems with benefits, loss of the 10p starting rate of tax or any issues you face trying to maintain full time employment.

You can find your MP by clicking here.

This web site will also tell you how your MP votes on certain issues. It maybe of interest for when you next vote.

Medical Reports, Mental Health, DWP & your doctors. - PLEASE READ THIS

2008-05-03T19:55:00.005+01:00

As you may have gathered from previous posts. I have been greatly concerned that during the review process. If you list several specialist consultants that deal with other medical issues you have developed alongside or by virtue of your HIV, especially mental health issues. The DWP typically only approach your HIV Consultant. Where they will not wait for this report they may approach your GP. Therefore only one aspect of your health is evidenced.

I was also concerned. Minded of the DWP guidance & that Mental Health issues were seemingly being ignored.

In my case. I have engaged in correspondence questioning the DBD551 I submitted. Specifically how or why a decision could be reached without medical reports covering ALL my health issues from ALL my consultants.

The response states;

"..... decisions are made based on a persons mobility and care needs and not the disability itself"

so why require any medical report if it is not required to reach a judgement on entitlement?

it then continues;

"You state that I implied that mental health would not be considered part of your current disabilities - this was not my intention. It is fully accepted that the facts you present with regard to your mental health are accurate and correct. You are quite right to say that not to approach other consultants you have mentioned would not give a complete picture of your HIV."

The Decision Maker then states she is to seek additional medical reports from my other consultants.

Why is this important?

Your HIV consultant or GP may refer you to other specialists, including mental health, that have more direct knowledge, history & understanding of additional illnesses you experience. They will of course be keeping your referring medic up to date. Though in my experience this is usually by letter and in very general terms.

Where a decision made has been made on the strength of a GP report only or your mental health or any other health issue you feel has not been properly evaluated. You may want to consider the above.

Apparently my original DS1500 was supplied from the St. Peter's Clinic. This is worrying as I have never been to any clinic of that name and checking my copy of that document it is not mentioned. This being one of several errors that, as you can imagine, is generating more correspondence.

I also mentioned in my previous letter. An error made on the medical report submitted, no fault of my current consultant, relating to my date of diagnosis. I wrote asking for this data to be corrected under the obligations of the Data Protection Act. I also copied this to my clinic for correction. The response implies that the DWP will not be changing this. That I should write to my clinic. So whereas this has been done and the error raised and changed. The DWP will not be asking for another medical report nor changing existing data. A complaint to the Information Commissioners Office I think now.

As I am completing my DLA556 I am concerned that information I am providing is not being treated correctly or in fact that the information is accurate.

Feedback South London - Thank you.

2008-05-03T19:27:00.001+01:00

Thank you to all at the Feedback South London meeting on the 2nd May for the warm welcome & opportunity to mention the group T_hCell & the efforts undertaken by the team with regard to the changes in the Benefits system.

If you live in South London please check out the website (http://feedbacksl.org.uk) to find out what they do and how you can get involved on matters about your care.

Events you maybe interested in

2008-05-03T19:19:00.000+01:00

If you are a patient of the Kobler, Victoria or Nkosi Johnson Clinics. The patient forum, KVN Forum, is meeting on Tuesday 6th May 2008 from 6pm to 8pm. I understand that a person from the Terrence Higgins Trust has been invited to this meeting to give advice on the Disabiliy Living Allowance Review.

"Please note that we are hoping to have representation from Daniel Payet of THT, who will be presenting the THT approach to dealing with DLA review issues. ...... so if you know anyone who may wish to ask Daniel any questions in particular, then get them to come along, or bring those questions / issues with you - spread the word." - Chair, KVN Forum.

If you live in Dorking. James Purnell, Secretary of State, Department for Work & Pensions is on the panel of BBC's Question Time Thursday 8th May 2008. You can apply to be part of the audience by clicking here.

BMA, GMC & Council for Healthcare Regulatory Excellence.

2008-05-01T15:04:00.003+01:00

Today I wrote to the British Medical Association, General Medical Council & Council for Healthcare Regulatory Excellence. To raise some of the issues with medics and medical reports that have been mentioned.

Medical Reports requested by the DWP.

2008-04-30T18:46:00.006+01:00

Just to highlight comments received over the last few days.

The DWP when requesting a medical report on you. Under there own guidelines should be approaching your HIV consultant.

As there can be a delay in response from some consultants. Some contributors have noticed that the DWP is sending a second medical report request to the GP.

If this has happened to you. Please let us know.

On the forms you get from the DWP you consent to them approaching any medical practioner that you deal with. For a medical report. If you do not give this consent on the form this could end up with your benefit being withdrawn.

You are not entitled to a copy of the medical report before the DWP have received it only after.

They actively encourage GP's in-particular, not to engage with patients before the doctor submits a medical report on you.

See this article on the Benefits & Work website (you may need to be a member). It links to a document titled "Advice to GP's completing Disability Living Allowance and Attendance Allowance Factual Reports (DWP - Jan 2008)" it states "Your report should be based upon your knowledge of the patient and the medical records. It is not necessary to interview the patient, as any information they provide, especially with regard to mobility and self care may not necessarily be objective." Of course the GP would need to have knowledge of your HIV and how it affects you.

Clearly this can create a problem if your GP doesn't know about your HIV or the specifics of ongoing treatment under the care of your consultant.

If you want to know what your doctor is writing concerning your health to any third party. Even where you have given your consent. You can (in writing) ask your doctor to let you have access to any report, for your review. Before they submit it on to the requesting 3rd party. You can also have access to any medical information held about you under the Data Protection Act.

We are working on the structure of such a letter and will post it to the main site when done.

Some thanks.

2008-04-29T17:49:00.002+01:00

Thank you to all those who signed the petition http://petitions.pm.gov.uk/DLA-Review/ it closes on the 2nd May 2008 so there is still time to encourage people to sign. This is just one way of drawing attention to the issues around Disability Living Allowance.

Thanks to James , you know who you are, for the information and your efforts.

Week commencing 28th April 2008 - Quiet.

2008-04-29T13:29:00.000+01:00

All,

We are in the middle of a nightmare that is the "Decent Homes" upgrade to our home.

Please bear with us. I will post when I can.

Thanks,

John.

What can I do to help the cause ...

2008-04-27T12:19:00.001+01:00

See June's message below and sign the petition

Write to your local MP.

Write to James Purnell, Minister of State - Department for Work and Pensions.

Write to Ann McGuire, Minster for the Disabled - Department for Work and Pensions.

Write to your local newspaper & national newspaper you read.

Write to your local HIV service provider telling them about your experience.

Challenge any adverse decision - read back through the blogs to understand what this might mean.

Let us know how you feel, what this means to you and your experience.

Only by building a body of evidence, your stories can we get a fuller picture of the impact.

Those of you that wrote to the editor of Positive Nation. I want you to understand, though your letter may not have been published, it has contributed to the body of evidence.

Personal Message from June Brown, Actress - EastEnders.

2008-04-25T10:35:00.002+01:00

"I am worried that the Disability Living Allowance Review is unfair as the form is tailored towards physical disabilities only-not Mental Illness, HIV/AIDS, Cancer sufferers, nor does it take into account the side effects of the medication on their general health.

Not only will people lose entitlement to Incapacity Benefit, their free travel. motability vehicle but also the Severe Disability Premium of Income Support so they will be forced into the utmost poverty, which can do nothing but harm their condition.

Employers will be reluctant to offer work due to the necessity of frequent hospital visits, periods of admission and bouts of prolonged ill health.

I would ask you all to support this petition in the hope this review is reassessed and to endorse the TCell campaign."

From the main www.hivbenefits.co.uk website.

Thanks to ....

2008-04-24T13:28:00.002+01:00

On behalf of all the Disabled Community affected by the issues surrounding Disability Living Allowance.

We thank :

Todd Carty

Actor & Director - Doctors, The Bill, EastEnders & Grange Hill.

for signing the 10 Downing Street petition on the Right Payment Program.

As always I link the name of our public supporters & friends to a site where you can see their body of work. Please take a moment to look.

Also I will add them, with their consent to the "Friends & Supports" page of the main www.hivbenefits.co.uk website.

All Party Parliamentary Group on AIDS.

2008-04-23T17:34:00.004+01:00

I have heard back from this group today.

"I just wanted to let you know that I had a very comprehensive read of your excellent website - it is a brilliant source of information from the front line. I am in contact with a number of organisations about the DLA issue and that I will be discussing it with Baroness Masham, who you wrote to. What we may end up doing is to write to the relevant Minister asking for improved services to soften the blow for people whose benefit levels are lowered and to help them find sustainable incomes. However we are gathering evidence from as many groups as possible first. I will keep you in touch."

I responded,

"Writing to the relevant minister as you describe is welcome. Thank you.

However I would draw particular attention to the process itself. It is not consistent or equitable in its application. We know it is prone to error.

Only yesterday. Some one asked me if the DWP could go straight to his GP ignoring that he has also given them information on his consultant. He has seen his GP on a very irregular basis over many years. I was asked if they could do this. Apart from an undertaking by the DWP that they would always in the first instance seek a medical report from the HIV consultant. http://www.dwp.gov.uk/medical/med_conditions/hiv-aids/sources_of_ev_hiv_aids.asp further clarifies this action.
He is to get back to the DWP and ask why they are ignoring there own “Sources of Evidence” guidance in his case.

This is just one of many comments I get about the process.

Yes some will not be entitled to the same rates. However this is questionable as we know some, unable to fight for there entitlements. Are to frightened to challenge initial decisions."

Useful report from the PSI (Policy Studies Insitiute)

2008-04-22T16:25:00.003+01:00

PSI undertakes and publishes research studies relevant to social, economic, industrial and environmental policy. The Institute is a charity, run on a not-for-profit basis. In 1998 it merged to become an independent subsidiary of the University of Westminster.

PSI takes a politically neutral stance on issues of public policy and has no connections with any political party, commercial interest or pressure group.

Reported on "The take-up rate of Disability Living Allowance and Attendance Allowance: Feasibility study" in August 2007.

Some of the points covered maybe of interest to you if you want to understand more about DLA.

Thank you.

2008-04-22T16:22:00.001+01:00

To Lord May of Oxford for noting the contents of our letter.

Thank you to Baroness Masham of Ilton.

2008-04-21T20:29:00.003+01:00

Further to the letters written after the House of Lords debate on HIV/AIDS.

Today I received a very supportive letter from Baroness Masham of Ilton.

She was one of the members who had taken part.

To quote her first paragraph,

"I am very concerned that individual people with long-term conditions, not only HIV/AIDS are not getting the help and support they should. I know from personal experience of the problems people with HIV can have. Everyone is an individual"

Baroness Masham is going to ask Baroness Thornton to look at the issues and acknowledges we have also written to her. Also she is sending a copy of our letter to the All Party Parliamentary group on HIV/AIDS prior to their next meeting that she is due to attend.

On behalf of us all, we very much appreciate your support here. I will also write to thank her.

Thank you.

Effects of "10p" starting rate Tax Changes.

2008-04-20T15:16:00.002+01:00

From the BBC News web story -

EFFECTS OF TAX CHANGES

Winners:

Most people/ with incomes of £18,000+
Under £18,000 but aged 65+ and therefore eligible for higher personal allowances
Under £18,000 but with young children and therefore eligible for child tax credits

Losers:

Under £18,000 and ineligible for working tax credits because under 25
Retired early and therefore ineligible for higher personal allowances
Part-timer working insufficient hours to qualify for tax credits
Different personal circumstances may affect final amounts

Source: PWC & BBC.

If your DLA Personal Care is reduced to Medium or Lower Rate.

2008-04-20T10:59:00.000+01:00

If your DLA personal care is reduced from "higher rate". There are implications for other benefits you receive. Many carry disability components that you may loose. You also loose your exemption to having your Incapacity Benefit reviewed and become eligible for the Personal Capability Assessment. Information gathered as a result of any reassessment of Incapacity Benefit is shared with and may have an impact on your DLA. The information is shared.

With the introduction of the Employment & Support Allowance in October 2008. Incapacity Benefit will be replaced. If you are down graded as described above. You will become eligible for reassessment for this benefit. Initially you will simply move across to this benefit. Then by April 2010 the government want to have reassessed all these claims that simply moved across.

Reducing DLA personal care from the "higher rate" of personal care. Seems to be a mechanism to facilitate the re-assessment of those currently on Incapacity Benefit as the new system "beds in". These re-assessments will happen over time.

The assessments under the Employment & Support Allowance are more focused on what you can do? rather than what you cannot do?. Again any information gathered here may have an impact on any DLA award you have at the time.

I do not mean to cause worry. There are many changes in the pipeline. I just wanted to re-iterate the impact both today and moving forward. So you are aware.

Confusing letter from the DWP.

2008-04-17T20:29:00.005+01:00

The DWP are sending out the annual letter telling you of your entitlement. My partner received one today. I know someone else has added a comment to a previous post on this.

Having submitted his DLA556 over a month ago he hoped it was his decision. He was panic stricken whilst opening it.

Addressed from "DLA SR Pilot Team"

It says the "Amount of money we pay you is going up" and mentioned indefinitely.

I asked him to give the DWP a call to confirm IF this letter was notification of his award that is expected.

Alas, NO. It was just the yearly letter sent out at the beginning of every financial year. His decision should be due in a few weeks.

Understandably he was upset and took some time to calm - medication helped.

It would have been a good idea if the DWP had inserted a note that this wasn't a decision that that would arrive in a separate letter.

So we continue to worry.

If you need clarification of any letter the DWP send you. Ring them and ask them. They are happy to clarify.

Community Legal Advice

2008-04-17T12:47:00.001+01:00

Thanks to K, who sent this information to me.

If you need legal advice take a look at http://www.clsdirect.org.uk/

They offer free, confidential and independent legal advice for residents of England & Wales.

Link added to Debt & Legal advice section.

My situation & DWP mental health.

2008-04-17T11:50:00.003+01:00

This relates to my personal circumstances and yours maybe different.

I asked why they had not approached other doctors mentioned on my DBD551.

Response,

" You question why the DBD551 makes no reference or referral to your mental health.

The DBD551 is our inital enquiry form which requests information with regard to your current disabilities, medication and names/addresses/consent to contact any medical profession that you are currently seeing. On receipt of your completed DBD551 we subsequently contacted "my HIV consultant.""

I further note,

"The information provided in the HFR from "my HIV consultant" provides sufficient medical evidence to aid us in our decision making process. If you feel that we would benefit from any other information please feel free to provide this at your earliest convenience"

I have written back again asking why they are ignoring the medical information & consent given to approach other specialist consultants dealing with other medical HIV related issues I have. Surely having given all the current medical information and details of who to approach. I would have thought the DWP would have sought full medical reports in order to reach a proper decision based on ALL the medical information they requested and is available to them.

I know this might cause you to worry. I apologise if it does. I post to make the situation clear and create awareness.

My situation & DWP forms don't fully deal with AIDS/HIV health issues.

2008-04-17T11:39:00.007+01:00

This relates to my personal circumstances and yours maybe different.

Prompted by Johnny, this confirms his experience. Also given the general criticism that the forms we are asked to complete are not specific enough to those with AIDS/HIV.

The reply from the DWP was

"You state the the DBD551 and DBD556* do not properly deal with all the health issues that you have in relation to your AIDS/HIV diagnosis.

The aforementioned enquiry forms are representative of customers with disabilities of all types and not specific to AIDS/HIV customers. You are entitled to present information with regard to the needs arising from your disabilities in any way which is suited to you. For example you may wish to send in a daily diary or forward a letter. However, page 9, 26 and 31 of the DBD556* are provided for you to include any other information about the problems you experience day to day"

** Remember any other method you use to submit information must include information on how you cope during the day and at night. Use the forms as a guide. **

* I think this is merely a "typo" and it means DLA556. I have written to seek clarification.

I understand if you have diabetes and make an application for DLA there is a specific form form for this condition. I await confirmation from the DWP. Clearly this begs the question why there cannot be a form tailored more specifically to AIDS/HIV.

Call the DWP to ask if they will accept information in another form. On the rare occasion I have called them I have found them to be helpful.

My situation & DWP time period for claims.

2008-04-17T11:36:00.004+01:00

This relates to my personal circumstances and yours maybe different.

The DWP advise that the normal period it takes to review is 12 - 14 weeks to complete.

However they rely on how long it takes for the claimant to return the forms. Also how long it takes your doctor to complete and submit any medical report. At present doctors are inundated with these requests in addition to there already full workload.

Mine started in December 2007.

The DWP will give you an extension in time if you need it to complete any form. Just give them a call and ask.

My situation & DWP legislation used

2008-04-17T11:28:00.007+01:00

This relates to my personal circumstances and yours maybe different.

I asked under what piece of legislation this review was taking place.

Reference was made to the Disability Living Allowance Advisory Board (DLAAB) and the report on "special rules".

Reply,

"You query the use of the law, the use of the DS1500 and the review itself. We are permitted to review benefit under Regulation32 (1) of the Social Security (Claims and Payments) Regulations. Although your claim for benefit was awarded for life does not exclude it from any future reviews that we wish to undertake. Further information with regard to reviews is also provided in the annual uprating letters that you should have prevously recieved. The DS1500 refers only to your original application in 199x and will not form part of the current review"

The "uprating letters" are those you receive, yearly. Detailing your award and the levels it is paid at.

I also asked if this review. Given the stress it puts many under doesn't contrivene the Human Rights Act.

Reply,

"This review complies with legislation including the Human Rights Act."

My situation & DWP omitted Viral Load

2008-04-17T11:24:00.004+01:00

This relates to my personal circumstances and yours maybe different.

I asked the DWP why they had omited my viral load on their Doctors Medical Opinion.

The response

"I acknowledge the importance of he recording of the viral load data, however the fact it has been omitted from this document will not affect the decision making process"

Forums on main website.

2008-04-17T11:16:00.003+01:00

I would draw your attention to two posts in the Forum section on http://www.hivbenefits.co.uk

If you can help please post a reply.

Body fat, Wasting & Lipodystrophy

2008-04-17T11:14:00.001+01:00

If you suffer with facial or buttock wasting you may be interested in the website http://www.facialwasting.org

Midweek Group. - Thank you.

2008-04-15T21:26:00.002+01:00

The Midweek Group is a group of gay HIV+ men that meet on a monthly basis. To discuss issues, provide peer support etc.

I was invited to join the meeting this evening to talk and answer questions on the DLA review.

Thank you to the organizers and participants for this opportunity that I hope was beneficial.

For details of the group & if you would like to attend see http://www.midweeklondon.org

Pro Bono legal help needed.

2008-04-15T16:02:00.003+01:00

If you are a fully qualified solicitor or barrister with experience in Welfare Law. If would be willing to offer your services on a "Pro Bono" basis we would like to hear from you.

Thank you,

john@hivbenefits.co.uk

Quiet for a few days.

2008-04-15T15:05:00.001+01:00

Been a little quiet over the few days for personal reasons. Have managed to write some more letters. Will post more information during the week.

Please feel free to comment and/or email me.

Thanks,

John.

Abolition of 10p starting rate for tax.

2008-04-15T14:59:00.004+01:00

It is worth a mention for completeness here.

Those that undertake employment either full or part time. On low wages because of the issues and discrimination around employment & HIV. Or those thinking of returning to work as they have no financial choice.

Will see their tax burden has increased with the abolition of the 10p rate of tax.

For many the DLA payments just about keep their heads above water.

You maybe interested in this interview on the BBC with Andrew Marr & John Hutton MP.

http://news.bbc.co.uk/1/hi/programmes/andrew_marr_show/7333179.stm

also David Blunketts thoughts on this click here.

Fuel Poverty - Battling Bills - What help is there?

2008-04-12T10:22:00.002+01:00

You may find this story from the BBC Website useful. Click here for original story. It contains many links to help.

"Battling bills - what help is there?

With average gas and electricity costs now totalling more than £1,000 a year, many families may be worried about paying their fuel bills this winter. This guide outlines what help is available.

KEY NUMBERS
Home Heat helpline
0800 33 66 99
Energywatch helpline
08459 06 07 08
Eaga benefit entitlement check
0191 247 3800
As well as the general help listed here, suppliers often offer grants, special tariffs and other measures on a case-by-case basis.

If you are having trouble paying your bill you should check with your supplier to find out what help is available from them.
GOVERNMENT PAYMENTS

WINTER FUEL PAYMENT

What is it?
A tax-free annual benefit, it is usually paid from November.

Who is eligible?
Those aged 60 or over by 24 September 2006 and who normally live in the United Kingdom.

How much?
How much you get varies according to personal circumstances. For example, a person living alone, or who is the only person in their household who qualifies, would receive £200 - or £300 if they are aged 80 and over.

How to apply?
If you have not had the payment before and are not getting a state pension or another benefit (apart from housing benefit, council tax benefit or child benefit) the payment will not be automatic, you need to apply.

You can get a claim form by calling 08459 151 515.
Or see this page on the Direct.Gov website.

COLD WEATHER PAYMENT

What is it?
The payment is made when the average temperature is recorded as, or forecast to be, 0C (32F) or below over seven consecutive days.

Who is eligible?
You are entitled if you receive the following:

pension credit
income support or income-based jobseeker's allowance and there is a child aged under five in your family
pensioner premium, higher pensioner premium or enhanced pensioner premium
a disability premium or severe disability premium
a disabled child premium or a child tax credit that includes an individual element for a child or qualifying young person who is disabled or severely disabled
How much?
A one-off payment of £8.50.

How to apply?
The payment is made automatically.

GOVERNMENT SCHEMES

WARM FRONT ENGLAND

What is it?
A grant scheme in England providing heating and insulation in privately owned or rented homes.

Depending on an applicant's needs, it will pay for things such as loft insulation, draught proofing, gas room heaters with thermostat controls gas and electric or oil central heating.
Energy advice and two low-energy light bulbs are also available.

Who is eligible?
You may get a grant if you get one or more of the following benefits:

working tax credit (with an income of less than £15,050 and which must include a disability element)
child tax credit (with an income of less than £15,050)
attendance allowance
disability living allowance
income support (must include a disability premium)
housing benefit (must include a disability premium)
council tax benefit (must include a disability premium)
war disablement pension (must include a mobility supplement or a constant attendance allowance)
industrial injuries disablement benefit (must include constant attendance allowance)
you have a child under 16, or are pregnant, and get income support or council tax benefit or housing benefit or income-based jobseeker's allowance or pension credit
you are aged 60 or over and get pension credit, or council tax benefit, or housing benefit or income-based jobseeker's allowance
How much?
Grants range up to £2,700 - or up to £4,000 if your home needs oil central heating.

How to apply?
You will need to complete an application form before an adviser visits you to assess and recommend work for your property. Call 0800 316 6011.

WARM DEAL SCOTLAND
What is it?
Offers grants for a range of energy-saving measures, including cavity wall insulation, draught proofing, four energy-saving light bulbs, plus energy efficiency advice.

Who is eligible?
You may get a grant if you get one or more of the following benefits:

attendance allowance
child tax credit (with an income of less than £15,050)
council tax benefit
disability living allowance
disabled person's tax credit
housing benefit
income-based jobseeker's allowance
income support
industrial injuries disablement benefit (must include constant attendance allowance)
pension credit
war disablement pension (must include mobility supplement or constant attendance allowance)
working tax credit (with an income of less than £15,050)
How much?
A maximum of £500.

How to apply?
Telephone 0800 316 6009

CENTRAL HEATING PROGRAMME SCOTLAND

What is it?
Funded by the Scottish Executive, it is a non means-tested scheme, providing free central heating and insulation packages for those whose system is broken and beyond repair, or who do not have one at all.

Who is eligible?
Residents in Scotland aged 60 and over who are home owners or rent in the private sector. They must have been resident at the address of application for at least a year and it must be their main home and not subject to a demolition order.

The address must be self-contained and have no central heating, or the existing central heating system must be completely broken and beyond repair.

How much?
Up to £3,500.

How to apply?
Telephone 0800 316 1653.

CENTRAL HEATING PROGRAMME SCOTLAND FOR OVER 80s

What is it?
Replaces heating systems, plus other measures such as a free smoke alarm, assistance with care and help moving and replacing furniture while heating is fitted.

Who is eligible?
Anyone over 80 who has a partial or inefficient system, generally more than 20 years old.

How much?
Up to £3,500.

How to apply?
Telephone 0800 316 1653.

HOME ENERGY EFFICIENCY SCHEME IN WALES
What is it?
Provides grants for energy efficiency measures - such as loft insulation, low energy light bulbs and gas room heaters - and energy advice.

Who is eligible?
Those in receipt of the following benefits and have a child under 16, or are pregnant:

income support
working tax credit (with an income of less than £15,050)
council tax benefit
child tax credit (with an income of less than £15,050)
housing benefit
income-based jobseeker's allowance
How much?
Up to £1,500.

How to apply?
Telephone 0800 316 2815.

HEES plus in Wales

What is it?
Aimed at owner-occupiers or private tenants in Wales, it provides grants for energy efficiency measures and gives tailored energy efficiency advice.

Who is eligible?
People aged 60 or over, or one-parent families with a child under 16, and in receipt of one or more of the following:

income support
housing benefit
council tax benefit
state pension credit
income-based job seeker's allowance
OR

Householders who are disabled or chronically sick, and in receipt of one or more of the following:

working tax credit
housing benefit
income support
council tax benefit, plus the disability element
disability living allowance
attendance allowance
industrial injuries disablement benefit, plus constant attendance allowance
war disablement pension plus constant attendance allowance
attendance allowance
mobility supplement
OR

Householders with children under 16 living in the property, who are claiming child benefit with the child receiving disability living allowance.

How much?
Up to £2,700

How to apply?
Telephone 0800 316 2815.

NORTHERN IRELAND WARM HOMES SCHEME

What is it?
Funded by the Department for Social Development, it is aimed at owner-occupiers and people who rent their homes from private landlords in Northern Ireland. It is not available for public sector properties.

The fund gives a grant for a package of energy efficiency and heating measures.

Who is eligible?
Householders of any age (the applicant or their spouse) who have a child under the age of 16 and who are in receipt of one or more of the following benefits:

housing benefit
rate rebate
income support
income-based job seeker's allowance
child tax credit
expectant mothers in receipt of a Maternity certificate (MAT B1) and one of the above benefits
OR

Householders under 60 (the applicant or their spouse) who are in receipt of one or more of the following disability-related benefits:

disability living allowance
housing benefit (with disability premium)
rate rebate (with disability premium
)
income support (with disability premium)
working tax credit (with disability premium) and NHS tax exemption certificate
war disablement pension (with mobility supplement or constant attendance allowance)
industrial injuries disablement benefit (with constant attendance allowance)
How much?
Up to £750.

How to apply?
Telephone 0800 181 667.

WARM HOMES PLUS - NORTHERN IRELAND
What is it?
In addition to the warm homes scheme, includes measures such as installing new central heating systems.

Who is eligible?
Householders who are 60 years and over and are in receipt of one or more of the following benefits:

rate rebate
housing benefit
pension credit
income-based job seeker's allowance
attendance allowance
disability living allowance
working tax credit (with disability premium) and NHS tax exemption certificate
industrial injuries disablement benefit (with constant attendance allowance)
war disablement pension (with mobility supplement or constant attendance allowance)
How much?
Up to £3,700.

How to apply?
Telephone 0800 181 667.

ENERGY SUPPLIER FUNDS
POWERGEN HARDSHIP FUND

Aims to assist Powergen customers who are low income households facing financial difficulty and who may not be eligible for financial help from government schemes.

Can offer the following assistance:

payments in full or part to cover the cost of installing cavity wall insulation and/or loft insulation
payments in full or part to cover the cost of repairing or installing heating measures which in some cases could include repair of unsafe gas heating systems
payments in full or part could be made to cover the cost of household appliances
Telephone 0800 051 1480.

EDF ENERGY TRUST FUND

A charity that gives grants to people who have electricity, gas, telephone, and in some cases, other essential household bill debts.

Funded by EDF, its gives grants, and financial and energy efficiency advice.

You must be a domestic customer of London Energy, Seeboard Energy, Sweb Energy or EDF Energy.

There are two types of grants. They are for:

individuals to cover the payment of gas and electricity debts and other essential household bills or costs
voluntary organisations working in the field of money advice, debt counselling or energy efficiency advice
Telephone 01733 421050.

BRITISH GAS ENERGY TRUST

The British Gas Energy Trust, which incorporates the Scottish Gas Energy Trust, gives grants to help individuals and families in need to meet arrears of energy charges and other household bills and costs.

You must be a domestic customer of British Gas or Scottish Gas.

Can help with:

arrears of domestic gas/electricity charges
other essential domestic bills and costs. You can apply for such help even if you do not apply for help with your gas/electricity charges
Telephone 01733 421021.

A winter fuel rebate is also available of up to £90 to British Gas's most vulnerable customers.

Telephone 0845 601 2006.

SCOTTISH POWER ENERGY PEOPLE TRUST

Organisations and groups can apply for funding to support projects or schemes covering:

crisis funding, such as women and children needing emergency accommodation and vulnerable young people setting up their first home
benefits health checks or income maximisation. For example, helping households that are not claiming all the benefits to which they are entitled
energy efficiency measures
research
If you are having trouble paying your bill you should check with your supplier to find out what help is available. Many offer grants, and/or special tariffs and other measures.

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/uk/6043288.stm

Published: 2006/10/24 00:25:38 GMT

© BBC MMVIII"

Keeping a diary.

2008-04-11T14:08:00.000+01:00

Been a week spent mainly researching & writing letters when possible.

Just a reminder that keeping a diary is a good tool when it comes to filling in the issues you face on a daily & nightly basis. When completing any form. It gives you something to remind you. It need not be too elaborate either.

Feedback from users.

2008-04-10T14:01:00.003+01:00

Hello.

Please let us know how and what you think about the website. Is there anything you want to see covered? Email me.

GOOD NEWS.

This morning heard of two more claims that stayed the same. The time frame on average thus far is 4 to 5 months.

Disability benefits and the European Economic Area and Switzerland

2008-04-08T10:11:00.003+01:00

Information is now available on the DirectGov website on the position of cliaming Disabled benefits whilst residing in the European Econmic Area & Switzerland.

This follows a statement in the House of Commons by Ann McGuire MP, Parliamentary Under-Secretary, Department for Work & Pensions. She is the Minister for the Disabled.

EAS Rates

2008-04-07T17:59:00.001+01:00

You may be interested in the following site's for detail about the Employment & Support Allowance Rates.

"Government Goes Against Spirit Of Parliamentary Promise To Disabled People, UK" from Medical News Today.

"New rates “will force more into poverty”" from Disability Now.

Also the Members forum on Benefits & Work has some good information on this.

Direct Payments

2008-04-07T16:28:00.003+01:00

"Direct payments are cash payments made to individuals who have been assessed as needing services, in lieu of social service provisions."

If you want to find out more the Department of Health has information on it's website - Click here

The Penerels Trust is a charity providing services to those in receipt of "Direct Payments". This is not a recommendation. I merely include this link for information purposes.

Shared Experience.

2008-04-06T13:46:00.003+01:00

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"

Non Clinical HIV Services in South London

2008-04-04T23:55:00.002+01:00

This is a follow up post to the one John made entitled 'Unhappy With Your HIV Services'

South London (with the partial exception of Bromley) has a unique arrangement whereby all of the PCT's (Primary Care Trusts) and local authorities (Council's) have got together to fund and make provision for a range of HIV services....you can find out what they are funding and who is providing those services for them by going to the 'South London HIV Partnership' website at http://slhp.nam.org.uk/cms1256039.aspx the site also gives details of how to access those services.

If you have any issues with the service you receive from any of the organisations providing services to you for the SLHP and you do not wish.... for any reason... to bring them to the attention of the organisation concerned or to the SLHP directly you can do so via 'Feedback South London' which is service user body.... details of which are available on its web site at http://www.feedbacksl.org.uk/

House of Lords Debate on HIV/AIDS April, 3rd 2008

2008-04-04T15:24:00.003+01:00

You may be interested in the content of this debate. Held in the House of Lords on 3rd April 2008. Click here for the debate.

As indicated in the debate. Lord Fowler is a trustee of the Terrence Higgins Trust & sits on the All-Party Parliamentary Group on AIDS.

I've had some correspondence with the All Party Group but await feedback on our issues.

Today, I wrote to several members of the House of Lords that took part in this debate.

Early Day Motion 637 on Disabled Poverty

2008-04-04T15:09:00.002+01:00

I found this today. It is an Early Day Motion, number 637. You can find it by clicking here to see if your MP has signed it. If not, please write to them.

"EDM 637

DISABILITY POVERTY IN THE UK

07.01.2008

That this House notes that the Leonard Cheshire Disability report Disability Poverty in the UK finds that disabled people are twice as likely as non-disabled people to live in poverty; further notes that disabled people can experience poverty in a number of ways including financial poverty, poverty of aspiration and poverty of opportunity; further notes that average basic living costs are much higher for disabled people; further notes that disabled people are twice as likely to be unemployed and seeking work than non-disabled people and that disabled people who are not expected to work are often trapped in inescapable poverty; believes that the extent of disability poverty in the UK today is unacceptable; and calls on the Government to make tackling disability poverty a priority."

Tcell group.

2008-04-04T13:13:00.003+01:00

Another successful meeting this week.

We are keen to find out what your thoughts are on what we do here. So please drop me an email or comment accordingly. Thanks. If you would like to get more involved also, please email me.

Some events & info you may find useful

2008-04-04T13:08:00.002+01:00

Picked up by a member of Tcell from the Tfl Disability Magazine "Getting There".

From the 29th April to 1st May 2008 - Naidex Independent Living exhibition at the NEC Birmingham.

Also there is an Advocacy group you may find useful. Called the Advocacy Resource Exchange they can be telephoned on 08451 22 86 33 between 2pm & 5pm, Monday to Friday.

DLA556 came in post this morning

2008-04-02T20:19:00.002+01:00

Well I was waiting for it as my partner had his. My DLA556 form came this morning. I have scanned this in and added it to the documents available, just follow the "Useful Documents" link on the main web site.

I make this available for information purposes.

Not everyone will be asked to fill in a DLA556. You may get a decision upon assessment of your DBD551 & medical report. You may be asked by letter to provide a little more information. Before a decision is made. Everyone's situation is dealt with differently and is unique to the individual. If you receive a DLA556 you have 4 weeks to complete it. You can call the DWP to ask for more time.

If you get any correspondence from the Department for Work & Pensions. DO NOT IGNORE it. Doing so may affect your benefit.

i-base funding withdrawn.

2008-04-02T14:56:00.004+01:00

Posted FYI - http://www.i-base.org.uk

"STOP PRESS: i-Base funding withdrawn: urgent request for letters of support

As this issue of HTB went to press we learned that the London Health Commissioners have withdrawn funding for all i-Base projects.

For the last two years we have received £50k (just under 20% of our annual budget) towards the treatment phoneline and information services, adherence support publications (the BHIVA-recommended treatment passport) and treatment workshops.

Public funding stabilised the project sufficiently to continue to provide HIV Treatment Bulletin and the five i-Base treatment guides free to all individuals and clinics, and to run additional treatment workshops with community groups.

In retendering for services the London Commissioners declined to tender for any existing project and refuses to contribute towards the costs of any i-Base services...

No publications, no treatment workshops, no advocacy training, no phoneline support, no email services, no online Q&A services, no translations of treatment publications, no website.

The i-Base phoneline has been provided expert peer-advocacy support for over five years, and have the cumulative experience from having spoken to thousands of individual patients.
Over the last two years the UK-CAB has developed into a representative network of advocates and peer advocates.
We have distributed thousands of treatment guides - ordered by request from clinics.

The commissioners think that no patients or clinics in London want or need these services.

We think this is unfair and is not reflective of the needs of London patients and clinics.

If you use or have used i-Base services as a London patient or clinic, please email letters of support to:
ray.appleby@kc-pct.nhs.uk
hong.tan@londonscg.nhs.uk

It would help us if you could copy any correspondence to:
simon.collins@i-Base.org.uk

i-Base employs three full-time and four part-time staff for all our projects. Five of the seven staff are HIV-positive. The funding decision, for which we are told there is no appeal, threatens these posts and the services we provide.

Thank you for your support..."

Positive Nation March Issue

2008-04-01T17:51:00.003+01:00

The March edition of Positive Nation is out and available on line by clicking here.

This edition has an article on the Disability Living Allowance review.

If you subscribe to this magazine it should be with you in the post or in clinic, shortly.

We would like to thank the team at Positive Nation for covering the DLA in this issue.

Some good news.

2008-04-01T12:39:00.001+01:00

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.

Unhappy with your local HIV Services.

2008-04-01T12:35:00.003+01:00

Your local Primary Care Trust (PCT) and/or local Council commission local services for HIV. For example you may have a local charity that provides counselling or welfare advice for people with HIV.

You are a service user. Your views shape how these services are delivered.

You can submit compliments or complaints to your local PCT/Council giving your views on the services available in your area.

You can find your local PCT by clicking here. Enter your post code and select NHS Trusts from the drop down menu.

Any letter should be addressed to the "Commissioner for HIV Services".

EAS Rates

2008-03-31T13:05:00.004+01:00

You maybe interested in this forum post from the Benefits & Work website concerning the rates of EAS when it comes in October 2008.

Click here.

Also you can see the Written Ministerial Statement from Stephen Timms MP, Minister of State (Employment & Welfare Reform) Department for Work & Pensions by clicking here.

Over the weekend I heard ....

2008-03-31T13:05:00.001+01:00

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.

Our DWP DLA files arrived today.

2008-03-29T12:07:00.003Z

Note: When the new blog and website are "bedded in I will cease posting to this site. In the interim,

A while ago. You will note if you scroll through the blog. We made a request under the auspices of the Data Protection Act. To the DWP for the information held on us in relation to the Disability Living Allowance (DLA). This comprised photocopied sheets and a printout from the system, mainly payment history. Some data, non medical, is missing and I will chase this.

I will work through this information and post accordingly over the next few days.

Bear in mind that I look at this data as a "lay person".

I note the following having "flicked" through.

My data shows in handwritting that I was selected for the "Pilot".
My partners file & mine have a sheet of A4 indicating the other is the partner
My partners review, from the large print out is also being handled by the DLA Pilot team. Given the links to our files from each others it is likely he was chosen for review because I was selected for the pilot. There is a note that my partners case is also being looked at in my file and vice versa.
The letter I wrote to Ann McGuire is part of my file and the subject of internal communication. The file was sent to the ministers office.
Both our original awards comprised of only the "Personal Care" component awarded under "Special Rules". Mobility being different.
The awards were "indefinately"
When the DBD551 is submitted & a medical report received from your Doctor. A DBD520SR form is completed by a "Registered Practitioner". This is the opinion of the DWP medic on the information provided. Part 2 comprised two tick box answers. Signed off by a "Approved Disability Analyst".

1st is "In my opinion, this person is still suffering from a progressive disease and their life expectancy is likely to be less than 6 months."
2nd, and selected in my case "From the evidence available to me, it does not appear that this person is suffering from a progressive disease likely to limited life expectancy to less than 6 months." There is then a box for a further explaination. In our case this is limited to an opinion our HIV alone. In my case though I have a Viral Load, this is omitted. In my partners case both his Viral Load and CD4 are noted.

No other information, awaited. Has arrived in the post so far.

New website & blog moving....

2008-03-28T09:26:00.002Z

Hello All,

This morning we put the new website online. This is a proper content management system and brings with it many advantages. It is searchable and allows us to contain the blog and start forums on relevant subjects.

All of the key information is on there including all the information on the old site.. Though certain areas are still being worked on, though these are new in nature.

This is our community resource. So it relies on you and your input to tailor it. Please take some time to look through it. Any comment or enquiries please email us.

Thanks,

John.

Shared Experience.

2008-03-27T15:37:00.006Z

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.

Some reports you may find of interest.

2008-03-27T12:08:00.003Z

The National AIDS Trust have produced a report titled "From a Positive Perspective: Key Issues for People Living with HIV in the UK

Also on the main page there is a section on "Public Attitudes Towards HIV 2007".

Crusaid, who provide a hardship fund. Have also produced an interesting report "Poverty & HIV 2007"

I highlight these as they maybe of interest.

Right Payment Program & Special Rules.

2008-03-25T10:20:00.004Z

You may be interested in the following :

DCS Advisory Newsletters. January 2008 mentions RPP & Special Rules.

Also,

The new forums on the Benefits & Work Website concerning the Right Payment Programme & leading disability groups.

Terrence Higgins Trust - THT

2008-03-23T20:19:00.010Z

Finally THT have given more prominence and some more detailed information on the DLA review on their website . This a change uploaded at the end of last week.

Only 3 months after I first emailed all the agencies I could think of including THT. At the time there was nothing on this review on any website. Which was the reason for starting the blog. THT certainly new this review was coming, over a year ago, given their membership of the DWP Disabilty & Carers Service Advisory Board. Guess it's better late than never. Though I personally believe in preparation and "forewarned is forearmed".

You will be pleased to know that there is nothing new on the THT website that hasn't been covered here in detail already.

However we are grateful that others who will find THT first. Will now at least get some information to help them.

Some of you undergoing DLA review may also have received an IB50 form for your Incapacity Benefit. Please see the following blog entry - Incapacity Benefit review. (IB50 Form) . I mention this as it is not on the THT website at the moment.

If need to submit a request for a revision of a decision or make an appeal see the documents section of the main website for the leaflet "If you think our decision is wrong" (Form DWP GL24).

It is not clear if the advice given by THT Direct . Will be more detailed than when we called, read here.

THT offers direct access to its support services if it is funded by your local council or PCT. Where this is not the case and you live in a borough that doesn't fund THT in this way. Where you have accessed THT Direct. Can you let us know if they are offering more support than merely passing you on to a local agency and collecting your year of birth for funding?

Thanks.

This was posted as a comment but deserves an entry

2008-03-20T22:20:00.003Z

"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.

2008-03-20T22:17:00.002Z

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.

2008-03-20T09:40:00.005Z

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

2008-03-19T18:23:00.004Z

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.

2008-03-19T15:27:00.003Z

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

2008-03-19T14:50:00.003Z

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.

2008-03-18T11:03:00.003Z

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

2008-03-17T20:45:00.004Z

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 ...

2008-03-17T18:30:00.003Z

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.

2008-03-17T11:45:00.005Z

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

2008-03-17T10:52:00.003Z

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.

2008-03-15T13:10:00.006Z

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.

2008-03-14T10:56:00.005Z

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

2008-03-13T16:41:00.007Z

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

2008-03-13T11:14:00.005Z

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.

2008-03-12T14:39:00.008Z

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

2008-03-12T13:44:00.003Z

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'"

2008-03-11T16:39:00.003Z

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.

2008-03-11T14:41:00.003Z

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

2008-03-11T12:45:00.004Z

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.

Education ....

2008-03-10T11:48:00.003Z

Some have mentioned. That whilst they have been unable to work or secure a job because of the discrimination & stigmatism they have faced.

That they have undertaken various forms of study that they have been able to fit in around the day-to-day problems they face with their HIV.

Some have at least one, if not, more degree's.

Yet when they try an apply for any job. The fact they have this wealth of educational achievement. Once HIV is mentioned. This seems to fall by the wayside.

They also face the issue of being "over qualified" for certain jobs.

Just thought I would mention this as an issue as I haven't picked up on it so far. I is just another problem we might have to face.

Clearly this indicates that people are willing to improve themselves by undertaking such activities. Well done if you have managed to do this.

Trying to get access to education is slightly easier than trying to get a job. But can also raises some common issues.

Most educational establishments will understand you have "bad days". That this can mean long periods where you cannot study. Will be compassionate to your lack of attendance. As they will usually put in place processes to ensure you do not suffer adversely.

Thanks to ....

2008-03-08T23:02:00.002Z

On behalf of all the Disabled Community affected by the issues surrounding Disability Living Allowance.

We thank :

June Brown.
Actress - EastEnders,

From BBC news website ....

2008-03-08T13:37:00.003Z

Concerning blood donation. I mention it as it might be of general interest.

The original story can be found http://news.bbc.co.uk/1/hi/health/7283541.stm

The main campaigning site is Bloodban

"Call to end gay donor blood ban

Campaigners are calling for tight restrictions on sexually active gay men donating blood to be relaxed.
The National Blood Service says clear evidence shows gay men have a greater chance of passing on HIV and other infections in donated blood.

However, campaigners say there are fewer restrictions on heterosexuals who have high-risk sex.

They want gay men to be judged individually according to their lifestyle, not as a homogenous group.

I just want to be equal - everybody should be judged on their personal activities
Russell Hirst
Currently, blood donated in the UK is screened for a number of bloodborne viruses, including HIV, and hepatitis C.

However, if the donor has been newly-infected with these viruses, there is a "window" in which the tests do not work.

To reduce the risk of contamination, the National Blood Service does not allow sexually active gay men to give blood.

There are also restrictions on intravenous drug users, or heterosexuals who admit "risky" sexual practices involving prostitutes.

Russell Hirst was denied the chance to give blood when his sister was seriously ill.

He said that the ban on gay men was a lifetime ban, while bans on heterosexuals were much shorter.

He said: "I was very shocked when my sister was ill, needed a lot of blood, and I wasn't allowed to donate blood.

"I just want to be equal. Everybody should be judged on their personal activities.

"If a gay man says that he's had unprotected sex with a man, then he should not give blood for 18 months - but I don't see why it should be a lifetime ban."

He said that the reason the ban remained in its current form was to save money for the National Blood Service.

Risk present

However, a spokesman for the National Blood Service said that the ban was in place "for good reason", and denied there were financial reasons for a ban.

"We ask men who have had sex with men not to give blood because, as a group, they are known to be at an increased risk of acquiring HIV and a number of other sexually transmitted diseases, many of which are carried in the blood.

"While safer sex, through the use of condoms, can reduce the risk of transmitting infections, it cannot reduce this risk to such low levels as to make it totally risk-free."

He said that current donations were enough to meet the UK's needs.

Russell Hirst's campaign, "Bloodban", has started a petition and intends to pass this to Prime Minister Gordon Brown.

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/7283541.stm

Published: 2008/03/07 13:37:29 GMT

© BBC MMVIII"

From the House of Commons, recieved today

2008-03-08T12:32:00.002Z

Work & Pensions Committee. From the Clerk.

I received a response to my letter this morning it reads:

"Thank you for your letter of 16th February to Terry Rooney MP. Chairman of the Work & Pensions Committee, enclosing your letter to Anne McGuire MP, Minister for Disabled People, concerning the review of Disability Living Allowance.

I will circulate your letter to the Committee and I will be in touch if the Committee decides to pursue this matter

Signed by the Clerk of the Committee"

So we are making more people aware.

Letter is on the process of being upload to the documents section of the main web site.

So as not to fall foul of identity fraud. Mindful of the Human Rights Act. I have removed identities on the letter. The name of MP's are already in the public domain & thus expempt from this consideration.

RNIB advice that is helpful to us all

2008-03-07T17:19:00.005Z

The Royal National Insitiute of Blind People have published on their website.

The RNIB can only give INDIVIDUAL advice to those with SERIOUS SIGHT LOSS. Please do not approach them otherwise. Like many they have limited resources.

Some advice & guidance on

Attendance Allowance
Advisor's guide _ how to claim Attendance Allowance - tips for advisors.
Disability Living Allowance
Challenging a Decision about DLA & Attendance Allowance

Though this advice is from a "blind person's" view point. The central themes & processes apply to anyone claiming either allowance.

I hope this helps and empowers you with your claim.

Thanks to Nigel (of the Tcell team) for his research here.

Comments are important....

2008-03-07T13:03:00.005Z

Thank you to those that are contributing to this cause. At the bottom of every entry in the blog you will see the word "Comments" with the number of people who have left comments on a particular entry.

I would encourage you to read this.

I am always aware that some of this can seem frightening. I apologise for that. The intention is not to scare. However I cannot in all good conscience be anything by honest. This is a blog and as is the nature of the beast . It means it is based, largely, on the personal opinions .

Truth can be upsetting. However when the truth of a situation is revealed. It empowers us to make a postitive step forward. Difficult though that first step might be.

If you have been worried or upset by any content. Please feel free to email me. I won't be offended by any constructive criticism you have to make.

This is as much about you as it is me.

U+

2008-03-07T12:55:00.002Z

Picked up from a NAM email. I hope they won't mind me replicating it here

"U+ is a new magazine for gay men with HIV produced by Terrence Higgins Trust. The magazine deals with the personal aspects of living with HIV.

Each issue covers a theme in depth and issue 2, which is out now, is all about recreational drugs. It gives clear, practical information to help you make your own choices. Topics covered include myths and facts about drugs, "preparing and repairing" for a big weekend and tips on reducing your drug use. We ask whether GHB is wrecking the gay scene, and cover the interactions between recreational drugs and combination therapy.

U+ is available in many gay bars, HIV organisations and HIV clinics. If you would like to be sent a copy, email your address to u+@tht.org.uk "

Info

2008-03-06T21:55:00.004Z

http://www.tcell.org.uk will direct people to this site initially as another temporary web address. Of course http://www.hivbenefits.co.uk with always and continue to take you to the main website.

Eventually, when the organisation is sorted. These things take time. It will direct you the main site for our group. For which this is the first campaign/issue we are dealing/running with.

We want to create a brand around what we do. One that is respected. But more about his later....

Any questions as always please feel free to email me to john@hivbenefits.co.uk

10 Downing Street Petitions..

2008-03-06T14:51:00.004Z

There are two petitions I want to bring to your attention. If you want to help our cause please sign both.

10 Downing Street petition on the Right Payment Program.

This is the primary petition I would encourage you to sign. It is the one signed by the supporters mentioned on this page.

Looking at the existing DLA petitions. They were all either on a specific point of the DLA or for a specific medical condition.

As we are trying to achieve fairness for all, including ourselves. That none of the existing petitions mention the impact of the review. To also lend publicity to our cause.

I have started our own petition.

It can be found at http://petitions.pm.gov.uk/DLAEquity/

I know these things if high in number can become lost in the mire. But our petition is unique in content.

Thanks.

Not another blog John!

2008-03-06T13:55:00.005Z

I have started another blog - Johns Background & Personal Thoughts.

I wanted to share the experience & lessons I have learnt personally as a result of starting this blog & website. The "journey" of my personal growth. I hope it inspires.

It is a place for the information not directly relevant to the DLA review. On that score, I will always post here.

However if you want to know why I started the blog, what motivates me regarding this etc.. this blog covers that.

I am a great believer in empowerment. Of encouraging and empowering people to deal and take ownership of the issues they face. I understand that not everyone can do this. Thats partly why this site exists. But where they can I hope this site helps.

If this inspires one person with the confidence to deal with their own issues than I will have achieved my goal.

The reality of the situation is. With funding being cut. With existing services completely stretched. It maybe that you have to rely on yourself more as time goes by. Channel your feelings, fear & frustration, into empowering yourself & others. You will feel better & it is very rewarding. It will certainly improve your personal well-being.

Spreading the word .....

2008-03-06T13:10:00.004Z

The HIV community is not alone in this cause. What we do through this web portal. Has a direct bearing and the experience & information given. Can and should be used by the wider disabled community. We are all in the same "boat" here.

To that end.

I interact with the wider community via The Benefits & Work website. .

I have a forum on the site - DLA Review & the HIV+ Community, How our community is coping. At time of posting this forum has recieved 1000 hits.

Please take some time to familarise yourself with this website.

Thanks to Steve the owner of the site for his continued good will and support.

This site is a resource that you should use if you are trying to empower yourself to deal with any benefit issue. It does cost. However it is a good investment. We don't cover everything here, in detail. Also I will not replicate any of Steve's work on here for free. He deserves our support.

Thanks to ..

2008-03-06T12:57:00.003Z

On behalf of all the Disabled Community affected by the issues surrounding Disability Living Allowance.

We thank :

Simon Callow, C.B.E.
Actor & Writer.

for signing the 10 Downing Street petition on the Right Payment Program.

As always I link the name of our public supporters & friends to a site where you can see their body of work. Please take a moment to look.

Our request for information held by the DWP using the DPA

2008-03-06T12:50:00.003Z

A few weeks ago, under the Auspices of the Data Protection Act. We requested that the Department for Works & Pensions (DWP) provide us with all clerical & computer records held on us in relation to Disability Living Allowance (DLA)

We received a response today.

They will "issue the records" as soon as possible and within 40 days of our request.

They have made no charge for this thus far.

If some one cares for you ...

2008-03-05T15:05:00.003Z

If you have someone that cares for you or you care for someone.

You may find the Archive of the web chat with Anne McGuire , Minister for the Disabled, interesting.

During the usual course of research this cropped up so though I would "throw it out" if your interested.

Supporting our cause ....

2008-03-05T14:29:00.007Z

Thank you to the following who are lending there support to raise the awareness of our issue. In pursuit of drawing attention to the impact this review means for us all.

Kate Williams.
Actress - Widows, She's Out, EastEnders. .

Che Walker.
Writer & Director .

Race Davis.
Actress - Roughnecks , EastEnders, Men Behaving Badly .

Daniel Kramer.
Director - Stage production of Angels in America .

I only post names of "famous faces" where the member of our team who has access to this network confirms the identity of the name. Thanks Jim.

If you are a famous name supporting this campaign via the DLA RRP Petition on the 10 Downing Street Web site. And we have not thanked you directly or given you mention.

Please drop an email to me (john@hivbenefits.co.uk) to confirm your identity and consent to allowing us to draw attention to your valuable support on this blog.

Of course, we thank everyone. In which ever way they can contribute to this campaign. For there valuable support.

KVN Forum meeting this evening.

2008-03-04T21:40:00.003Z

The KVN Forum.

This entry concerns patients accessing the HIV services the Chelsea & Westminster Hospital. Namely - Kobler Centre, Victoria & Nkosi Johnson Clinics.

However I post it for general consumption under the auspices of sharing experience.

It was good to see so many at a meeting given over to the DLA issues for patients of these clinics.

Many questions were raised. Of course they encapsulate certain key themes, whats happening?, how do I get help with my form? What will I do if my income falls? etc .... Of course many are anxious & scared.

Some, including myself, tried to give the group the benefit of what we had learned. It is important to note that we and I are in the same boat as everyone. I am not lawyer or a welfare rights worker and cannot tell you or help you to fill in the forms you recieve. All we can do, using the tools at our disposal - Patient Forum groups, Internet, Media etc .., is to share our collective experience to further understand the "picture" here and make the "powers that be" aware.

Existing services are thin on the ground and over stretched. Not everyone is going to be able to get direct help. Whilst this needs to be addressed it must not distract from the core process of providing the information.

In many cases I am afraid. It maybe a case of having to "get off your arse" and do the work yourself. Use this site and others to get the information and research the answers to your questions.

That is the honest truth of it unfortunately.

Engage with your HIV services, take part and raise this at your treatment center's & it's Patient forum. Use these forums and this site to share your experience so we can all learn.

If you need more time. Ring the DWP and ask.

SPEAK to your HIV Consultant when you get the DBD551 form.

Personally I would like to have the time to help people on an individual basis. However that stops me being able to undertake the research that is of general use to us all. Of course I am ill myself & do have a family life. So if you have come up to me at a meeting and I have been unable to give you time or the help you seek. Please don't feel offended. Really the best way you can help is to contribute to the wider agenda use this portal thats whats it here for.

I understand the the forum is pushing back it agenda for the year. To facilitate further meetings on this issue.

It was apparent that many do not have internet access. Positive Nation should go some way to covering that audience.

As mentioned. A meeting is taking place tomorrow for the Kensington & Chelsea HIV Service Users Forum from 6pm to 8pm. The venue is The River House, Rutland Grove, Hammersmith, London W6 9FE.

Website is live again.

2008-03-04T16:09:00.002Z

The move was successful. The blog is hosted separately so if the main site is down this should still be live (and vice versa)

Any issues etc. As always email us and let us know.

Problems with main website

2008-03-04T14:53:00.004Z

We are aware that there maybe problems with the main web site. So far we have hosted it on the webspace provided by our ISP. This has a limitation as far as data traffic allowed.

To resolve this. We have taken up a web hosting package from a company we have used for many years. This will cost £7.99 per month for the time being. Of course technically this does bring additional benefits to us.

Please bear with us - we are undertaking this activity at present. I will post when the issue is resolved.

It is unfortunate than any activity such as this does have a financial impact. We will seek in the future to raise the necessary funds to cover these expenses. In a manner that maintains our independance at ALL times avoiding "conflicts of interest. Though I don't expect the funds needed to maintain our ongoing operation to be particularly high.

Please be assured we will keep full accounts. And when funds are available I will seek to recover these incidental running costs.

Though clearly our campaign is our No.1 priority at the moment.

I want our community to see that the team that leads this , and & any future campaign. Does so in an open, honest & transparent way. I hope this entry demonstrates this philosophy adequately.

A letter recieved today....

2008-03-04T13:19:00.004Z

I have written to many people about our campaign for equity & fairness. Including government ministers.

Full details are found, at the moment, on the about us page on the main web. I keep this diary so you can see the work done by the team on our behalf.

Anne McGuire, Minister for the Disabled, has responded.

Albeit through a member of the DWP correspondence team as it is "not always possible for her to reply personally to everyone who writes to her". I will be uploading the response to the documents page on the web today.

To highlight some points

Applies to claims awarded over three years ago under "Special Rules".
Follows the recomendations of the DLAAB "Special Rules Study" after discussions with various groups representing disabled people. Terrence Higgins Trust in our case.
It was agreed that the initial enquiry. To medical health personnel. Would be addressed to the HIV consultant.
With only ONE medical report requested at the outset.
The issues I raised with respect to the introduction of the Employment & Support Allowance warrant a separate reply ?????

Some of the points carry links to other websites so you can see for yourself the background supporting information.

I note that they included my NI number on the response. Though I didn't give it in my initial letter. I assume they have pulled my file. It will be interesting to see what happens to my claim going forward.

New experience ... thank you.

2008-03-04T13:08:00.002Z

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.

Polls on this site...

2008-03-03T21:28:00.002Z

It is useful, to collect some data from you. This data is collected anonymously and with regard to your confidentiality.

It helps guide our campaigning & gauge the impact within the community.

I think these three cover most bases and I will keep to just them. Please use them.

Note. Please keep all your paperwork

Thanks

Thanks to ....

2008-03-03T11:39:00.006Z

Jim, for his efforts regarding his media contacts. Some well known faces are now supporting all of us, regardless of disability. In the struggle we face with this review.

I have a forum on the Benefits & Work website - DLA review & the HIV+ Community. So far 634 hits.

I posted this,

"There is a 10 Downing Street petition on the RRP found at http://petitions.pm.gov.uk/DLA-Review/ .

Thanks to a member of our campaigning group we are starting to see some famous names lend their support to ALL of us who are going through the Disability Living Allowance review, regardless of our disability.

Some of us are more vocal than others than this. We don't mind. We know not everyone for whatever reason, most likely health, can contribute. You can feel isolated, scared & worried.

I hope this gives you some comfort that you do not face this alone.

At time of posting

Ann Mitchell
Widows / She's Out / recently, stag production of Angels in America and EastEnders

Hannah Waterman
New Tricks / EastEnders

You will find them at the bottom of the page.

Of course not only on behalf of http://www.hivbenefits.co.uk but our wider community I have passed our thanks on."

Thanks also to YOU. Word of mouth it one of our key tools here to get the powers that be to wake up to this.