Written to

I have written to the Minister for Disabled People, Secretary of State DWP & the Chairman of the Work & Pensions Select Committee.

"If only to dot the i's and cross the t's"

Be interesting if I

a) get a reply
b) content of reply.

Will post to web complete correspondence in due course.

Website.

New pages added on Benefit Changes comming and Meeting & Interview tips.

Positive East.

Thanks for your support.

From email.

Comment from contributor via email.

"Will this stand up as an argument against the DLA review?
Times online report:
HIV vaccine may never be found, warns leading Scientist.
http://www.timesonline.co.uk/tol/news/uk/health/article3370346.ece


Nothings really changed since the 1980s.
Medication = a reprieve, a prolonged death sentence.
DLA helps (medication short & long term Side effects aside) the quality of that still shortened life expectancy. Any one an idea of what the long term effect of pumping all these drugs into our system will be in the near future.
There's so many different combinations & ever new 'experimental' drugs that seem to do the trick now but who knows how & for how long?
Lab mice & monkeys?
Please all due respect to the research doctors, scientists & any one else in the HIV business for trying though. Don't stop please."

Problems posting comments to blog.

Apologies all & thanks to the person who let me know.

The blog seems to have reset itself to only allowing you to comment if you were a "Google" account holder.

I have changed this to allow anyone including anonymous comments to be added.

The blog allows me to moderate comments made anyway.

You should be able to comment now.If not please let me know.

New Website Front end.

I have added a web site front end to the blog.

If you have accessed this blog from the url http://hivdlareview.blogspot.com.

You might wish to navigate to the main website http://www.hivbenefits.co.uk

I hope this will allow easier access to information. It will also allow me to put up specific pages on relevant issues.

I will always post in the first instance here.

The site has gone live. If you find any problems with it please email me : John@hivbenefits.co.uk

Positive Nation Magazine.

Just spoken to Postive Nation magazine who confirm they will be covering the DLA Review in there March issue.

You can subscribe to the magazine here.

Thanks for this.

Dates for your diaries .....

In the email today from the KVN forum supporting HIV patients at the Kobler, Victoria Clinic & Nkosi Johnson Clinics.


"The next KVN Positive Forum meeting on Tuesday 4th March will be discussing DLA review which seems to be affecting many HIV applicants at the present time.

The meeting is scheduled for Tuesday 4th March from 6pm-8pm at the usual venue - 4th Floor Conference Room, St Stephens (Kobler) Centre, Chelsea & Westminster Hospital. It would be good if as many members (and guests) as possible could attend to participate and share information/experiences.

On the same topic, there is a NAM meeting on Monday 25th February at the following venue which may be of interest to members as well.


http://www.aidsmap.com/cms1038352.asp
"
Thanks to the forum for this.

NAM tell me there is space for about 80 people providing about 45 chairs. If you want to attend and require a seat. It maybe worth calling NAM on 020 7840 0050 so they can cater for your needs.

I certainly will be attending both.

A shared experience - Thank you.

"hi i am pleased to find a site that gives information on the dla review, i sent my dbd551 form back on 7th january, i have been waiting for news for a few weeks, so i rang the dla phone number and they told me that they were still waiting for a reply from my doctor at "my London" clinic, they said that they had been in touch with "my London clinic" and that because the clinic were inundated with these forms that it would take longer than usual to hear from them,it is so stressful waiting for a reply, i can only hope that when news comes it is good news, though somehow i feel that most people will have to reapply.i am so pleased that you have set up this forum where people can at least be kept informed, keeep up the good work,"

Edited to maintain confidentiality. This very much reflects the experience many clinics are facing unfortunately.

Look if your local council provides HIV services. You can find out from your local council website. Otherwise ask in your clinic if they can recommend an avenue of help for you.

HIV medics are having a hard time also with this review. They have a legal duty to provide accurate information. For them. Knowing you so well as their patient. They worry that what they might write. May have a negative effect on your current entitlement. However there report is interpreted by the DWP who are often not as specialised medically. Your medic is on your side.

Thanks to the originator of the emailed comment.

I welcome all feedback. It is only together that we will help each other.

Progress on my claim.

Even though I submitted my forms before my partner. He recieved his DLA556 form has already arrived. We are currently completing it.

My consultant called to confirm that the medical report form has just arrived for me! There seems to be no logical time frame as to how long each part of this process should take.

No doubt I will receive my DLA556 application form in the next few weeks.

The DLA556 form is sent. If following yor medical report. The DWP believe there has been a change in your condtion since you last applied. It is in effect an application form for the Disability Living Allowance. Rather like a re-application.

As always when something happens I will post.

Also, I am busy on the phone pushing awareness. Thanks to those who have taken my call.

Motability.

If you have any concerns about a car or vehicle you have under the Motability Scheme please call them on : 0845 456 4566 (8.30am till 5.30pm Monday to Friday).

However, as many comments & emails I have received mention worries about Motability Cars. I called them today to get some general advice. Please email me if you need any clarification.

There are two components to the Disability Living Allowance. Disability Living Allowance is awarded at three rates for personal care.

The other component is , the Mobility component also awarded at three rates. Where you are awarded the "Higher Rate". You can use your allowance to take part in the Motability Car Scheme.

I do not know how the review is impacting the Mobility component. Please email me if you have any experience to share.

• If your Mobility component is reviewed. And you awarded the "medium" or "lower rate". The DWP will inform you & Motability of the case.
• You then have the right to appeal that decision. An appeal can take up to three months. Inform Motability that you have made an appeal. During the appeal period you retain your car. The cost is met by Motability. You incur no extra charge.
• The DWP will write to you & Motability with the decision of the appeal.
• If your appeal is successful. You continue your contract with your car as normal.
• If your appeal is not successful. Motability will make arrangements with you to collect your car. You contract for your car ends. You will not be charged for any period of your contract that is outstanding.

I hope this answers some of the worries people have raised. I would encourage you to call Motability if you need any further reassurance.

I called the campaign office for Mr. Brian Paddick

Following on from an earlier post where it was suggested I contact Mr. Brian Paddick Mayoral contender for the Liberal Democrats in London. I telephoned his campaign office this morning.

It has to be understood that any benefit review or change is an action of National Government. Outside of the remit of the Mayor of London.

I explained to the gentleman I spoke to. That it had been suggested to me by a previous poster. I approach Mr. Paddick. Whereas I understood this issue was outside of the campaign for Mayor. It would be helpful for Mr. Paddick, when he engages with the gay community. Where this issue was raised. He would have some background to draw from.

Also that we would all appreciate it if he would, where he could, make people aware of this issue.

On behalf of us all. Thanks Mr. Paddick for any effort you make in creating more awareness of this issue.

Note: The author of this site has to remain politically neutral. This entry does not constitute an endorsement of any political party.

A comment from a previous post.

"Congratulations on setting up this blog - the first thing you seem to learn with hiv is that when it really counts the one thing you can always be sure of is that you're usually on your own!

I am in the same situation regarding the DLA review, trying to access some guidance concerning the DLA556 form, and had the same experience with THT - although they tried to be as helpful as possible on the telephone (I found myself feeling sorry for the guy, who spent ages trying to locate someone), the organisation's management doesn't seem at all interested in providing the kind of support that people living with hiv are looking to them to provide - but I guess that that is hardly a new story! The excuse is funding as you say, but I did a research project involving the archives of a major funding charity for hiv nad AIDS a couple of years back and alot of orgainsations in the past seem to have done tremendously valuable work focused on the needs of people affected by hiv with access to far poorer funding than THT currently enjoys.

The only resource available to me in Harringey, in north London, is also on a single opportunity, once a week, basis for 3 hours. You can't book, and their answerphone message announces that they will not respond to messages - I can vouch for the fact that they don't!

With time running out to complete and return the 36 page form, I've realised that to have any chance of a fair review I will have to pay a minimum of £300 to a solicitor (I bought my home years before I got the boot from my job, so have too much equity in it to qualify for legal aid - but obviously you can't eat bricks and mortar and you need a roof over your head). This is a very stressful and unhappy situation, and I know that I, at least, feel badly let down."

Thanks for this post. Check any insurance policy you have (car/health??/house), or credit cards you hold. Sometimes you may get a free legal service as part of your package of incentives check your contracts.

A shared experience - Thank you.

This came in the email recently. Sorry its a long post but is complete. I have edited it to maintain confidentiality. Thanks for taking the time to email & sharing your experience & views.

Initial email :

"Thank so much for the HIV & DLA review forum. A “close relative” has had his forms hidden away for three weeks to scared to open them. A friend tidying up for him found them recently & acted quickly within the time frame allowed, we now wait anxiously for the outcome. My “close relative” understandably has an ostrich approach to life. Doesn't see it wont happen.

AT least I know what to expect when its my turn on hearing the post hits MY floor everyday............

The whole thing has become a nightmare as I am having to do all the research myself for both my “close relative” & myself. The forum has been extremely informative & so glad I found it, BUT I am still extremely anxious, having sleepless nights worrying about the outcome. Being ** y/o & diagnosed 17 years ago, 'made redundant' two weeks later?? Very suspicious but hey it was a big American take over & I suspect related.
I'm apprehensive about the future. My “close relative” has been positive for 12 years. The whole situation has had an almighty effect on all our family.

If ever there was a call for an experiment on how HIV can differently affect siblings, we will be ideal guinea pigs. My brother has had every opportunistic infection going, for ever having adverse reactions to medications, KS, PCP, to name a few. I on the other hand suffer no more serious than the occasional pneumonia or viral meningitis. Living with HIV has been more a problem for me than the physicality of the disease. I'm now diazepam dependant because of it. Oh & how my GP hates giving me repeat prescriptions for it, deal with your issues is a common response. How & with who? I've not been told despite asking.

It appears that no one really knows what's going on & what's terrifying is that when diagnosed 6 months to live 17 years ago, I made financial decisions that I now regret as I'm not eligible for Insurance or policies that would have secured my home for my HIV negative partner in the event of death, whether HIV related or not. I'm not the only one I know who made the most of a very bad situation at the time of a shortened life expectancy.

I suspected back in 199* this would happen when medical advances started to improve the quality of the lives of so many I know & so prepared myself by retraining as many of my friends did BUT have had so far had no success on the employment side. I know that a five-day 9-5 job would be a major struggle physically but I WOULD HAVE to manage. Quality of life may be financially better for some, not so sure emotionally & mentally. How the hell do you explain, without arousing suspicion, what you've been doing for the last 17 years & at what point? Advice can be taken on the right approach but I foresee problems with any employer outside of the 'gay industry that would want to employee with baggage.

There are some many unanswered questions if & when someone's DLA is taken away. Does it take effect immediately? Does that mean we can no longer pay our mortgages? How would effect other benefits i.e. Incapacity benefit? I thought that the DS1500 & DLA would at least be a security to top up a salary for low paid positions offered that I now may have to apply for as my options & time are running out. So to the Motability car which would also have enable me to seek work further a field than just locally.

Sorry I could go on & on.........

I'm not sure why I've emailed you in truth except again to thank you for the reassurance that my “close relative” & I are not alone, but maybe my email might help in giving you yet another case for the attempt at having the DLA witch hunt stopped & not just for those of us that are HIV positive.

You may use some or all of this on the forum but PLEASE NOT my details. I'm paranoid enough as it is. A white van out side the house is enough to send me into a crisis. "

I responded :

"All the issues you raise are fairly typical. The reason for the blog was to help but more to encourage dialog with those that HAD already been accessed so more of the unanswered questions could be answered. The blog can be intimidating and my direct approach on most things might make the issues somewhat daunting. I have been working on a website to try and soften the approach.

Not all stories are bad. Though if I am honest most I hear of are of a loss of some or all DLA.

Funny, we both had the forms. My partner is being reassessed and we are currently working through the form as your email arrives. I have heard nothing so far.

Your “close relative” is very much the type of person that worries me and encourages me to keep going. He is fortunate to have you. It’s the ones who don’t will suffer more adversely. If not responded to. The benefit would have been withdrawn. He would have had to apply afresh anyway.

Yes I have a post-it to call Motability to find out what the situation is. Will try and do that this week and post something. One of the problems is the more I post the more negative it can sound. Those that feel happy to email me thank me for starting the blog but are the minority. The blog has had 370 hits and on a forum elsewhere about the same. I have had about a dozen email me. I believe in “fore warned is fore armed”. I am aware the blog could look very bleak. However there are no straight answers because like HIV, everyone’s situation is different.

But the awareness is growing which is good. People are talking more openly.

I will edit & post your comments. I fully understand your confidentiality.

On the GP front. The KVN forum held a meeting about the increasing role of the GP in HIV care. This apparently has affected the Health commissions thinking. Because so many people came forward with really bad experiences.

You don’t say which area of the country you are in. Does your clinic have a patient’s forum?

Good luck with your applications. Let me know how you both get on."

Followed by :

"Thank you for replying John,

After a relatively good nights sleep for a change, mind you a couple of sleeping pills helped, I do feel a bit more positive this morning.

I live in” London ”& I must admit the services here have been excellent with the original LEAN & the Globe centre, which have now merged as POSITIVE EAST.

My “close relative” lives in Brighton, he appears to have almost a permanent bed at the hospital. He has a very good CAB woman who has helped him in the past, its just getting him to do anything that is the problem.

Just a thought....... how about trying to get our Mr PADDICK somehow on board, after all I'm sure he is hoping for a large PINK VOTE for the mayoral elections."

My last response :

"Good to hear Positive East are helping you. I will add a link to there website. I notice this issue is prominent on their website. I have called Positive East and left a message.

I would email Mr. Paddick however there is no email address on his mayoral website. Yet plenty of ways to promote his campaign."

Note: The author of this site has to remain politically neutral. Any political view expressed or implied is the view of the original author of comment / email.

Thanks to QX Magazine.

QX magazine covers the Gay Community.

Page 8 of this weeks magazine carried an article about this review.

Thank you for helping promote awareness of this issue.

Clicking the link will download the pdf of the magazine.

Incapacity Benefit review.

Not unrelated to the DLA review. Many also claim Incapacity Benefit. This raised other issues. The emails I get are mentioning this subject also. Here is what I understand. Please feel free to email or comment if I have any issue wrong or with your experience.

Disability Living Allowance \ other benefits.

If you receive other benefits where the amount you recieve is dependant on the level of DLA you get. I can only assume that these benefits levels may be lost or reduced depending on the level of DLA you will get post your review. You have a legal duty to declare on forms sent to you to ensure your information is up to date. Check with your solicitor/welfare advisor/ social worker for clarity.

Incapacity Benefit.

The Welfare Reform Act 2007 comes into force later this year. They are replacing Incapacity Benefit, Jobseekers Allowance & Income Support with the “Employment & Support Allowance”. As far as I can gather. I have just started reading the explanatory notes before tackling the act. Those applying will get a basic allowance. Following an assessment period (13 Weeks max.). You are then awarded either a work supplement which will require you to engage in activity towards finding a job. Or you will be awarded the support supplement. The support supplement will not place a duty on you to engage in the "seeking work conditions" of the work component. Though the support supplement will be reviewed yearly.

Many I know are being called in to reassess their Incapacity Benefit. They get the forms fill them in. Have an interview at the job centre & may have to undergo a medical examination by a DWP medic. This assessment I gather is so that when the new benefit package comes online. All existing claimants have been assessed and then transferred to the relevant core benefit & appropriate supplement. Clearly to assess 1.2 million claims within the first 13 weeks of the new benefit going live would result in chaos.

Also, the Benefit Integrity project is looking at Incapacity Benefit to ensure it is going to the right people.

Job Centre interview.

When you get the letter this can cause anxiety. However the interview is mainly to introduce you to the services that the Job Centre can offer IF you decide in the future to try and get back into work.

It is not as daunting it seems. They really are just trying to be supportive and will not (in my experience) place you under any pressure. They are just offering you help.

Interviews are often held in the "open plan" office. You can ask to been seen in a less public space if you need to discuss your HIV. In my experience they are only to happy to do this. In the last case where I accompanied someone. When I mentioned that if the conversation required a discussion of medical issues it would have to be in private. The case officer said he was aware of the medical condition & there was no need to further discuss it.

Medical.

You maybe asked to go to a medical. Just be very frank with the medic. Remember the fact you may be having a "good day" and thus there. Is not indicitive of what a "bad day" is. They will understand this. They will usually talk about the information you have written on the form. In my experience they are very sympathetic.

If you are worried & need advice please seek professional advice from your Solicitor/Welfare worker/Social Services/Citizen Advice Bureau.