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.

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 (T_hCell & 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.

Received via email and reproduced with consent.

Click here for an interview in the Times with James Purnell MP Secretary of State for the Department for Work & Pensions.

It is an insight you may find useful.  

It is the second article I have seen reporting that he may be the next leader of the government should the current Prime Minister go.

 From the http://www.theyworkforyou.com website.

Sandra Gidley (Shadow Minister, Health; Romsey, Liberal Democrat) | 

One of the issues we at T_hCell are keen to raise and "run with" are the issues around Mental Health & HIV.  In the coming months we will develop a micro site from the main http://www.tcell.org.uk website.

We feel this is an important issue that needs to be raised, discussed and highlighted as it is often not given the importance it is due.

In the Useful Documents Section you will find some Mental Health Papers and I have just uploaded a document called "Key Psychological Tips for Living Confidently With HIV" that you may find useful.

No news today. It is the nature of such things. We still continue to work away in the background.   

I have uploaded a set of Charts to the Useful Documents Section.  I have tried to keep these charts as simple as possible to show the flow of a claim.

Any comments, anything that needs adding email me please to john@tcell.org.uk 

Had a meeting with Lisa Power of THT this afternoon.  Thank you to all of who have contributed on this website as it has allowed me to feed this back to Lisa @ THT.  It also gave me an opportunity to discuss issues about the perception of THT raised here.

Thank you to Lisa for her time.  We have agreed to feed back any issues to her so she can raise them through the DWP DCS Advisory Panel.  

This follows on from the KVN Forum meeting of last week. 

Firstly thank you to those who have donated to T_hCell.  It has helped us secure two years web hosting on an ISP that gives us the technology basis we need moving forward.  No one earns anything from this the donations are merely to meet the costs.   Funds are paid directly (via paypal) to the T_hCell bank account with the Co-operative Bank and require two signatories for a payment, none myself.  I have no direct access to this account and have to justify any expense to the wider group.  

Thank you again.

Click here for the link to the BBC news article.  You can leave a comment on this story by viewing it from the BBC News website and we would encourage you, where you feel comfortable, to do so.

Reproduced here for was of reading.

"Disabled 'wrongly denied' benefit

Disability campaigners say thousands of people who are unable to work are being wrongly denied incapacity benefit.

Charities including the Disability Alliance, Mind and Citizens Advice say the government's system of assessing claimants is not working.

 This Friday 18th July 2008 from 5.00pm to 8.00pm there is the meeting & garden party of Feedback South London at The Positive Place, 52 Deptford Broadway, Deptford, London SE8 4PH.

Feedback South London is for HIV+ people who access HIV services in the South of London.

Both The Positive Place & Feedback South London have been good friends of T_hCell and this benefits campaign.

Further to the blog entry "DWP's Own medical guidance on HIV/AIDS".  The content seems to have been updated after this initial blog entry.

You can find the section on the DWP website for HIV/AIDS by clicking here.

We note amongst the most important changes. Is the change to "Sources of Evidence" noting that the GP is not always aware of diagnosis. We know of some who have been "outed" to their GP because of the impatience of the DWP to wait for the consultant to return the medical report and in haste going straight to the persons non-specialised GP.

Also a new graph on the "Clinical Features Page" and AIDS defining illnesses mentioned also. Which is good to see as they seemed to not deal or recognise AIDS at all.

In case you do not subscribe to the NAM updates by email.

I raise this for your information (FYI) and the original story can be found on the NAM website by clicking here.