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 ThCell 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 ThCell 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.
ThCell is not responsible for the content of external websites. Navigation and use of information on external websites is at the users own risk. ThCell is a wholly independent organisation. You should not consider any externally linked organisation or website as endorsed or recommended by ThCell. 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. | |
ThCell is not responsible for the content of external websites. Navigation and use of information on external websites is at the users own risk. ThCell is a wholly independent organisation. You should not consider any externally linked organisation or website as endorsed or recommended by ThCell. 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 Thcell 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.
ThCell, 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 ThCell 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.
After a few days break. Thanks to one of our team for providing some documents that you may find interesting.
Available in the Useful Documents Section.
DWP "Guidance for Examining Medical Practitioners" . This is used by a company called Atos Origin who are a contractor for medical services for the DWP.
DWP "Disability Living Allowance EMP Report" this is the form filled in by a medic if you have a medical visit as part of your claim assessment process.
I would like to thank the person who has donated funds to us. This makes a huge difference to us as a group especially as we are essentially self funded at the moment.
John.
Hello, I am starting this blog due to the lack or resource available on the internet in the UK concerning the 2007/8 review of Disability Living Allowance by the DWP (Department of Work & Pensions) following changes to the rules. Although this change effects all those on the "Higher Rate" awarded under "Special Rules" or claims older than 2 years. I have a specific interest in those who are and suffer from HIV. When I recieved my review. I tried looking for help online to no avail. I subsequently emailed various interested parties including, THT, i-base, Positive Nation etc. A copy of the email is below. If you have been affected or are affected I would like to collate the experiences here. Please add to the blog or email me at john@tcell.org.uk and I will add it if relevant. Thanks.
Just wanted to draw your attention to another successful decision on a claim. The detail of this can be found by clicking here in the Forums section of this website.
Today we (ThCell & Feedback South London) had a meeting with the Policy Advisor to the All Party Parliamentary Group on HIV/AIDS.
This was a productive meeting and allowed us to raise the issues, mentioned by so many of us on here. On the difficulties and unfairness of the current reviews.
I read all your comments and was able to relate your issues anecdotally and anonymously. So thank you for those.
I hope, moving forward, to develop more of a relationship with this group. After all they have the same interests as those of us with HIV in ensuring equity and fighting the stigmatism that is an unnecessary but daily burden for us.
My lack of posting yesterday was due to the need to prepare for this meeting.
I will post back when I have further information.
Thank you to the Advisor for their time today.
John.
If you want to read up on the Employment and Support Allowance. You may find this page from the Disability Alliance useful for background reading. Although this mainly concerns new claims for the first time. At some point before 2015 all existing Incapacity Benefit claims will be migrated across. Though this changes. The original date was 2010.
I am a great believer in forewarned is forearmed.
John.
P.s. I found this in a Trade Union magazine the other day and it applies to me and has been rolling around my head so I though I would share it.
"If you fight you might not always win. But if you don't try you will surely lose"
If anyone happens to have an Incapacity Benefit form number IB50 which has not been filled in. I would appreciate it if you would send it to me. I need to provide one to someone as part of the information pack for campaigning purposes. I would also like to scan it in and make it generally available.
If you can scan this in or have a copy to send me please email me - john@tcell.org.uk
Thank you.
Just a reminder that if you are a patient covered by the KVN Forum. There is a meeting tomorrow evening with Lisa Power of the Terrence Higgins Trust. Click here for original post and links.
Thank you to John McDonnell MP for Hayes & Harlington for his hand written response this morning. I will scan this in an add to the documents section.
It reads -
"Dear John,
Thank you for your letter concerning DLA.
I share your concerns about the reforms to the administration of DLA and will take these issues up with Ministers. I have met with various welfare rights groups on the new welfare reforms and will do all I can to press for change.
Yours,
John"
I have an IB50 form now thanks to the person who provided this.
Today we heard from Lawworks that they had managed to find us a legal firm that is willing to look at the legal case we have. This legal case is a collaboration with Feedback South London.
We believe there is a case concerning the Disability Living Allowance and Disability Working Allowance Act 1991 and various other pieces of legislation. We have not briefed or given any detail on this as yet. It would be unfair to do so. UNTIL we are legally sure.
This is an update to this entry - click here and the request for pro bono legal work - click here.
Lisa Power from the Terrence Higgins Trust attended the KVN Forum this evening to brief us on the activities of THT with respect to the DLA review.
Thank you to Lisa for providing us with this data.
As of the 30 May 2008 - this relates to HIV cases.
1477 claims had been cleared by the DWP.
882 claims had been reduced or disallowed.
141 claims had been re-reviewed. Of these 99 had been cleared and of those 45 had the original decision overturned.
114 claims had been appealed. Of these 54 had been cleared. 51 had been "lapsed" ( this means the DWP changed their original decision before the appeal hearing ) & 1 decision was overturned.
The term "cleared" refers to claims that have been processed. The difference between for example the 141 claims for re-review and the 99 cleared are those that are still being processed at the time the information was made available.
Lisa Power from the Terrence Higgins Trust attended the KVN Forum this evening to answer questions from forum members on the DLA Review.
In due course the minutes will be placed by the Chairman on the KVN Forum website.
Questions were drafted in advance of the meeting from members and presented to Lisa for her perusal.
What follows are the points that I picked up.
THT was invited to take part in the DCS Advisory Panel about a year ago. At the time their membership of this panel was subject to a binding confidentiality agreement. THT considered it's position on this. They decided it was better for a HIV organisation to be involved to try and make the case for those living with HIV in the UK. Lisa works with another colleague on this panel. They managed to get members of BHIVA to also advise on the issues face by HIV people in relation to review, the impact etc. As mentioned they made the case, whether they were listened to by government was another issue. THT were unable to comment until the review pilot started. THT still meet every 3 months or so as a member of this board.
I have been dealing with the comments to the last few blog entries and I would ask you to take a look.
I am under the weather at the moment so I apologise in advance if posting is sparse.
John.
As you may be aware. Though this is our blog for the community. I also run forums elsewhere in various other community's that have an interest including the wider disabled community.
Today I heard from one individual who I have been in touch with. In February of this year there DLA was withdrawn and they decided to appeal. Today they told me the decision had been overturned and the payments back dated to February.
Whereas we always encourage you to press for a re-review and/or appeal (Oral is best). We know it is a decision you have to take with some thought. We have always supported people in whatever they have chosen to do as we fully understand the issues.
However this demonstrates that the process does work sometimes and is one of many cases on this blog.
Some of you may have received a review form for your Incapacity Benefit - an IB50 Form.
If you get the Higher Rate Care component of Disability Living Allowance you do not have to fill this form in, you are exempt from filling it in - click here.
We have been good in getting the word out on this following the original story.
Some of you may have received a review form for your Incapacity Benefit - an IB50 Form.
If you get the Higher Rate Care component of Disability Living Allowance you do not have to fill this form in, you are exempt from filling it in - click here.
As always we recommend you get proper advice from a welfare rights service or legal advisor.
