Thanks to ....

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

We thank :

June Brown.
Actress - EastEnders,

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.

From BBC news website ....

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

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

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....

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+

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

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..

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!

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 .....

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 ..

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

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 ...

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 ....

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.

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.

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

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....

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.

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...

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 ....

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.

MP sample letter.

Some of you asked for a sample letter for your MP. I have put something up under Documents on the main site http://www.hivbenefits.co.uk..

This is very much a sample letter. Feel free to amend and edit as you see fit. If it inspires your own letter than great!

If you can put our case more succinctly I welcome your input.