This is a subject that we will come back to from time to time as we challenge the existing situation with regard to giving consent to the Department for Work & Pensions (DWP) with respect to signing the consent component of your forms.  If you tick the box refusing this consent it seems, for the time being, that the DWP will simply see this as an end to your process and this may stop your benefit. There are issues around this which we are raising.

However the primary relationship here on this subject is the personal relationship between you and any doctor you see.  Your doctor has a duty, as described by the General Medical Council & other representative bodies, to let you know and discuss any report they write on you to a 3rd party.

The DWP when they request a report tell your doctor they have your consent and you don't need to see the report.  We also know they advise GP's not to discuss the report with you the patient before it is sent.

In order for you to have control and absolutely ensure your rights to see and discuss any medical report on you requested by a 3rd Party. I have added a sample letter to the Useful Documents section.

"I know, first hand, how much distress and anxiety this review is 
causing to men and women with long term conditions such as HIV/AIDS, 
Cancer and Mental Illness.  There has been great advances in medication 
for many of these illnesses and the scientists have our profound 
gratitude but there are side-effects and they can be debilitating both 
physically and emotionally and deeply distressing.  The Government 
doesn't seem to have taken this into account.  The stigma and ignorance 
attached to HIV/AIDS in particular is still very real and the pain this 
causes is great.  With no long term plans or solutions in place, I fear 
that many  men and women will be forced onto lower benefits, or to take 
low-paid work -given employers reluctance to offer any real  
opportunities to men and women with ongoing health issues. I urge 
EVERYONE to contact their M.Ps , voicing their concerns and continue to 
support the important work being done by T_hCell. " 

Ann Mitchell, Actress - Widows, She's Out, recently - stage production of Angels in America & EastEnders.

Hope everyone had a good Bank Holiday weekend.

http://www.tcell.org.uk is up and running with details of the next general meeting.

Currently engaged in securing some "pro bono" legal assistance to clarify some points in law which may apply to certain DLA claimants. Will report back when I have more information.

"Thank you for your recent correspondence regarding the termination of the Right Payment Programme. I agree with you that there are concerns regarding the Special Rules review. I will be writing to the Department of Work and Pensions to highlight the points you have made in your letter and will get back to you when I have received their response." - Office of Diane Abbott.

Personally am still somewhat under the weather, chest infection. So I apologise for any day I am not posting.  

It is uplifting when every day something arrives , someone has taken time out of their day to help us. I know we are all grateful, I certainly am.

John.

So we got our decisions today and they stay the same.  Which seems like good news. However given the avenue of law we are pursing - thanks to one of our team. We believe that the DWP doesn't have the legal right to approach those who claimed before 1999. Of course any decision now makes all claims subject to current law moving forward. So we continue the battle. We believe our original claims should stand moving forward.

Though they said our files were NOT linked. It must therefore be pure coincidence that my partners form when back over 2 months ago and mine 2 weeks ago. With the decisions made within 24 hours and received on the same day.

What drives all of the team is the person in our minds eye that cannot deal with the issues this raised for them.  We continue as before to campaign on this. Moving forward we will have to also deal with the Employment and Support Allowance. 

So we move forward, together as before. There are still many issues to overcome.

John.

We received a letter from David Cameron's office today. Our issues and concerns have been passed on to the Conservative Work & Pensions team for their further consideration. 

Thanks to Mr Cameron & his team for their reply.

 I have added this to the links page. However if you want to know what the DWP's own guidance is on HIV/AIDS and who it should be approaching for a medical report than see the section http://www.dwp.gov.uk/medical/med_conditions/hiv-aids/

This information is in the blog but may have become lost in the history. So by moving it to links it is more accessible.

*Edited 3rd June with some clarification from THT. See bottom.

Terrence Higgins Trust have launched a face-to-face service via it's THT Direct arm at Gray's Inn Road (THT HQ) from 2nd June 2008. It offers face to face advice on welfare benefits, housing, employment, immigration & debt.

It is unclear what times this service will operate. 

You can see the press release here http://www.tht.org.uk/mediacentre/pressreleases/2008/june/june2.htm

Or the actual web page for the service here http://www.tht.org.uk/howwecanhelpyou/needhelpnow/thtdirect/facetoface/

Telephone number 0845 1221 200 10am to 10pm Mon-Fri, Midday to 6pm Sat & Sun.

"James Brokenshire (Shadow Minister, Home Affairs; Hornchurch, Conservative) | Hansard source

To ask the Secretary of State for Work and Pensions whether any officials in (a) his Department and (b) its agencies were disciplined or dismissed for (i) breaches of data protection requirements and (ii) inappropriate use of personal or sensitive data in each of the last three years for which figures are available. 

 I would draw you attention to the response by the minister for the Disabled Ann MCGuire on this issue published http://www.theyworkforyou.com/wrans/?id=2008-06-02a.208036.h&s=Disability#g208036.r0 .

Comments to this entry on the theyworkforyou.com website are those of the respective author and not endorsed by tcell.org.uk.

 I am minded to mention that when completing any form for new claims or reviews. Where it asks for the date when it first started, this is the date you first realised you had an illness. That is to say the date is the date from which you first noticed the medical condition.  This may be several weeks before a formal diagnosis was made. However the form is about you.

I have been engaged in correspondence with Lady Gould.  Though we differ on the role of THT.  I am greatly encouraged that on the subject of HIV+ people, we have another friend in the House of Lords.  

She has taken the time to read our correspondence and reply thoroughly and she has my sincere respect for this.

From her correspondence and passing the information on. There is mention of a programme which will be similar to the "Positive Futures" project that was run by the UKC.  I am in touch with the organisation she mentions and await full detail. I will blog on this when it is received.

Also, Lady Gould mentions http://profiles.yahoo.com/positiveactionuk as "a yahoo group solely for people living with HIV. It was formed out of a recent conference for people living with HIV- with the aim of creating a campaigning voice network for the HIV community, not run by any official organisation".  I have no experience of this group and my mention is not to be taken as a recommendation. You will have to find out for yourself.

This may sound familiar to what www.tcell.org.uk is trying to achieve. It is the same. Only my picture is all over the place on the website so people know who I am and can approach me when I am in clinic or in a meeting.

I am keen to break down the existing barriers that organisations seem to but in place with regard to supporting one another (largely down to funding). If this method works for you I am pleased.

Thanks to Lady Gould for bring this information to our attention.

John.

In the email this morning I heard of someone who has lost there entire Disability Living Allowance. A process that started in January. It has taken the DWP 6 months to deal with this.  Appeal is an option but what fails to be understood is that this brings with it pressure and stress as it involves preparing your case.  I always encourage people to appeal and an ORAL appeal rather than written. However I am also very aware of why people would not want to pursue this and fully support any decision they make.

This is the reason I will continue to use my efforts to raise the issues around HIV & benefits. Seeking a fair, properly considered case for those of us for which it is our only income.  I may have recieved a favourable decision but I see this as merely one hurdle passed this time around and now campaign for the future.

Though this was prompted by the "Special Rules Review".  I become more concerned with those who are making new claims today. As is the nature of any progressive illness, people claim when they need the help. I am concerned at the disparity HIV+ face filling in forms that are very general in nature. I am also concerned with one case that the DWP don't seem to consider the cumulative effect of many illness a claimant has in addition to HIV. 

I think I can generalise and say. It is not that we as HIV+ people feel we should be treated differently. But we absolutely demand we are treated fairly and properly. If that means changing the DWP process to fully inform decisions made completely consider matters from a definite perspective of HIV than so be it.  They can start with the general nature of existing forms, that skews this perspective.

John.

The HIV clinics of the Chelsea and Westminster Hospital - Kobler, Nkosi Johnson & Victoria clinics. Have a forum for HIV patients that attend these clinic's.

If you want to get involved because you are a patient here or want more information see http://www.kvnforum.net . 

Your own HIV clinic may also run a similar forum for it's patients. Ask at your clinic for information if you want to get more involved in your care.

KVN Forum & Terrence Higgins Trust (THT).

At the May 2008 meeting. Lisa Power was to have attended. However her diary commitments left her unable to attend in person but two of her colleague's were sent to address issue's the forum had. It was a robust meeting.

Lisa did say she wanted to attend a future meeting of the Forum to address issues directly. Especially as some of the questions raise,  her colleagues were unable to answer as they were on THT Policy. 

 The BBC are running a debate on the NHS at 60. You can find and contribute here - 

http://newsforums.bbc.co.uk/nol/thread.jspa?forumID=4884&edition=1&ttl=20080605142532

This, as I understand will feed into the Newnight programme.

As we all use and rely on the NHS I mention this for your information.

 http://www.thepositiveplace.org.uk/find_us.html

6pm to 8pm 5th June 2008

Thank you to all who gave up their time to attend the public meeting of T_hCell last evening.

It was very productive and many topics were covered including the need to hold our MP's to account, DLA & the law, PR and avenues to promote our group etc. . I am glad the subject of appeals was raised.

People need to be aware, and I repeat an earlier blog entry. When you go for appeal. The decision could bring about an even worse award for benefit than the one that brought the appeal in the first place. It is a risk. Whereas I encourage appeal it has to be considered and I would recommend you get proper advice to aid that decision. This is why I fully understand those who do not wish to go down this avenue.

One of the "fronts" on which we have been campaigning is he Right Payment Program. It is one of many campaigns we are running concerning Disability Living Allowance as it effects us and all disabled people. Our main issue is HIV people and Disability Living Allowance whether you are a new claim, subject to review by virtue of the "Special Rules Review" as well as any implication the Right Payment Program has.

10 Downing Street have responded to the DLA Review petition many of us signed. You can find the original text at http://www.pm.gov.uk/output/Page15690.asp

As you can imagine. Running a campaign take money.  So far this has been funded out of our pockets. Paper, stamps, webspace etc all costs. We will be making applications over the coming months for grants & funding. In the meantime for those who want another way to contribute you can now do so financially. All contributions are welcome. Just click on the Donate button below.

Looking at costs & security. We looked at various online donation tools and Paypal was the cheapest for us offering us good security.

No one draws or earns a living for contributing their skills & time to T_hCell and it's campaigns.  It is all done voluntarily, in the main for and by the HIV community for themselves.

Thank you.

John.

We have a Skype number  0203 239 4129 which has a voicemail detailing our next meeting or meeting's with other groups we hope to attend.  We would like to be able to deal with people on the phone on a  1 to 1 basis but we don't have the resources to do so.

Emily Thornberry is the MP for Islington South & Finsbury.  A number of her constituents have raised their issues over the Disability Living Allowance with her. We have also written in support of these constituents.

I am please to say that one constituent has received responses from Emily Thornberry.  Although her letter was addressed to the Rt. Hon. James Purnell MP, Secretary of State Department for Work & Pensions.

She received two responses from :-

Terry Moran, CB. Chief Executive. Pensions, Disability and Carers Service. Department for Work & Pensions. - Click here for letter in Useful Documents Section.

I mention this out of general interest.

A recent Tribunal Case, CDLA 3585 2007, dealing with a case of epilepsy not HIV. Also covers questions concerning The Disability Discrimination Act 1995 & the Effect of medication is relevant to conditions of entitlement.

You can find the case on the Tribunal Website http://www.osscsc.gov.uk/aspx/view.aspx?id=2410 

The Commissioner as part of his judgement deals with the Disability Discrimination Act 1995 and it is likely this would be the case regardless of illness.

I have had a few questions on the use of the Disability Discrimination Act & the review of claims. It maybe useful to be mindful of the information contained in this Judgement.

Confidentiality

Given the Stigma that still exists surrounding HIV.  I fully appreciate the issues surrounding confidentiality.  Many are scared and worried about their identity being associated with this illness.  That is perfectly OK.  When this is coupled with the other sensitive issue of benefits.  This creates a very tall "wall of silence".  I appreciate all the issues this raises as I face them myself. If you email me, your email will be confidential.  Email is downloaded to my computer and erased from my ISP every day.  

If I publish your experience to the web site.  I will do so only after removing any identifying words.  

If you have any queries or worries about privacy, please email me.

If you read the last issue of Positive Nation you will have seen an article about the launch of a podcast service called Positive Life. This is now live and can be found at http://positivelife.me.uk/ .

The Terrence Higgins Trust have launched a new site for "Men who have Sex with Men". Called "HardCell", http://www.hardcell.org.uk/ , the site is explicit in nature and therefore adults only.

If I can make an observation here. I notice that the THT branding is not very prominent on this site. I wonder why? I also note that THT has been launching many new services this month. Maybe the letter writing works.

T_hCell is not responsible for the content of external websites. Navigation and use of information on external websites is at the users own risk. T_hCell is a wholly independent organisation. You should not consider any externally linked organisation or website as endorsed or recommended by T_hCell. Links are provided, in good faith, to information you may find useful.

If you are a HIV+ Gay man these sites provide help & support. HIV+ support sites serving the HIV+ communiity can be found on the Support Agencies link page.

		GMFA, the gay men's health charity,  is a comprehensive resource for Gay men with HIV covering benefits, health etc.
		Terrence Higgins Trust has a number of websites aimed at Gay men.  There is also the "Hard Cell" site which is explicit in nature.

T_hCell is not responsible for the content of external websites. Navigation and use of information on external websites is at the users own risk. T_hCell is a wholly independent organisation. You should not consider any externally linked organisation or website as endorsed or recommended by T_hCell. Links are provided, in good faith, to information you may find useful.

This is for links to media information & those who have carried an article on this issue.

• Positively UK, http://www.positivelywomen.org.uk publish a magazine on a quarterly basis for women living with or affected by HIV.
• FS Magazine, http://www.gmfa.org.uk/londonservices/fsmagazine/index
• QX magazine, http://qxmagazine.com/ is a general weekly magazine covering the gay scene. Thanks to them for publishing an article on this matter in there issue of week commencing 6th February 2008.
• BOYZ, http://www.boyz.co.uk/ is a weekly magazine.
• BBC Ouch http://www.bbc.co.uk/ouch is the BBC's Disability web site. They have a forum on the DLA found here.
• Gay Times, http://gaytimes.co.uk . Serving the gay community.
• DIVA , http://www.divamag.co.uk/diva/. Serving the Lesbian and Bi-sexual community.

If you live in South London there is a HIV+ Service User forum called Feedback South London - http://www.feedbacksl.org.uk/ . 

On Friday 13th June 2008  from 5.00pm to 8.00pm at  The Positive Place - 52 Deptford Broadway, London SW8 4PH. http://www.thepositiveplace.org.uk/

Please see the Feedback South London website for details.

I hope to see you there.

John.

If you live in South London there is a HIV+ Service User forum called Feedback South London - http://www.feedbacksl.org.uk/ . 

On Friday 13th June 2008  from 5.00pm to 8.00pm at  The Positive Place - 52 Deptford Broadway, London SW8 4PH. http://www.thepositiveplace.org.uk/

Please see the Feedback South London website for details.

I hope to see you there.

John.

June Brown was awarded an M.B.E. in the Queens Birthday Honour list. It was awarded for services to Drama & Charity.

June has been a good friend to T_hcell and this campaign.  

I have passed back to her our congratulations on the occasion of her award.

 From http://www.theyworkforyou.com. A written answer from Dawn Primarolo Minister of State (Public Health) on the incidence of HIV/AIDS in the UK.

Surveillance for AIDS started in 1982 and for HIV in 1984.

Number of cases in the last 30 Years.

HIV      93,231

AIDS    23,596

Number of cases in the last 12 months.

HIV       6,840

AIDS        750

Thank you to Feedback South London for the invitation to their monthly meeting on Friday.  As always it was productive for the local service user community it serves. This was a good meeting as one of the Local HIV Commissioners attended to hear first hand from the service users about their issues and thoughts on the services commissioned on there behalf. 

T_hCell, the group behind this campaigning site.  Has much in common with Feedback South London. Though we are both independent entities. The main and most important thing we have in common is Service Users {that's you and me by the way}.  Feedback South London as it indicates is a forum for HIV positive people in the South of London. Services are commissioned differently here. Rather than each Primary Care Trust (PCT) and local Council commissioning and funding HIV Service provision on a council by council basis. The councils and PCT's have joined to form the South London Partnership. Commissioning services by pooling their funds for this.

If you want to know more see http://www.feedbacksl.org.uk

As is the nature of such projects there are days when there is no real news.  Waiting for responses etc...

However we continue to pursue our aims and objectives.

I hope in the near future to meet with the All Party Parliamentary Group on HIV/AIDS to highlight the issues we face. I will report back when done.

Rather than have days of not posting I would rather write something.

Reading and dealing with the emails today reminds me to ask you to read through the comments placed by users. Not only to you get to hear their issues you may pick up some advice or information you might find useful.

I hope you are enjoying the good weather at the moment.

John.

 As you know the Employment and Support Allowance comes into effect from October 2008 for new claimants. with existing claimants of Income Capacity and other benefits being moved across to the new system gradually up to 2015.

We keep a watchful eye on what is happening here as it may affect us.

I just wanted to give you some information links so you can see the background news, debates and work done by the Disability Benefits Consortium (I note there is no member HIV organisation listed here).

This story and related links contain some key information on payment rates. Form the Benefits & Work website please see the article "ESA honeymoon ends in bitter accusations".

Thank you to the person who emailed me this information.  Unfortunately their decision left them with a loss of both DLA & Incapacity Benefit.

From the http://www.theyworkforyou.com website, you will note the question to the Minister of State for Public Health is asked about her involvement with the DWP.

"

Oral Answers to Questions — Health

HIV Infection

All Commons debates on 17 Jun 2008

2:30 pm 

 From the Forum section for DLA that has been stopped - click here.

"Thank you for your  advice and support regarding the recent problems I have had with the DWP, I had a meeting yesterday with the hiv social worker and a worker from welfare rights to discuss my appeal, the welfare rights worker suggested that it could be at least September before an appeal date.  Today I received another letter from DWP stating ; You made an appeal against the decision about DLA issued to you on 06/05/08 . We have looked again at the facts and evidence we used to make our decision. As a result we have changed the decision. You are now entitled to Disability Living Allowance, higher rate for help with getting around and higher rate for help with personal care.

Thank you to the person who scanned and emailed me a "blank copy" of the HFR (T1) form.

You can find this document in the "Useful Documents" section or by clicking here.

When you submit your initial enquiry form DBD551. The DWP will send this for completion to your Doctor(s).

Further to the blog entry "Good News on a decision challenge".

I wrote to Vince Cable MP (letter & email) a few months back. He was very busy at the time and his office did send a card acknowledging the content of the letter.

I was really pleased today to have received a further response from him.

You can read it here , and it is in the Useful Documents section.

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.

This weekend the website will move ISP. Hopefully this will not cause much disruption.

As you what we do here is on a "shoestring", "out of our own pocket, largely" budget.  This has dictated the functionality we can offer on what we can afford.  However the T_hCell project and its campaigns always need work to ensure moving forward we have the functionality we feel we need to deliver our information.

Thank you for your patience. 

John.