This blog has moved.

Blogger has been a useful way of starting to get our message across and sharing our experience.

Moving forward. New posts will only be made to the blog on our main website - www.hivbenefits.co.uk

We welcome you to the new site. It has a search feature that should help you to find the information more readily.

John.

Now is the time to write to your MP especially if the seat is marginal

If you claim any benefit now. Given the current political climate where the government maybe more receptive to the issues you face. It is a good idea to remind your MP of the issues you face living with HIV.

If you don't claim any benefits at the present time. What is being allowed to happen today. May affect you in the future should you find yourself in the situation where you need to claim for benefits.

Either way, please write to your local MP if only to raise the issues facing all of us who live with this illness. Problems with benefits, loss of the 10p starting rate of tax or any issues you face trying to maintain full time employment.

You can find your MP by clicking here.

This web site will also tell you how your MP votes on certain issues. It maybe of interest for when you next vote.

Medical Reports, Mental Health, DWP & your doctors. - PLEASE READ THIS

 As you may have gathered from previous posts.  I have been greatly concerned that during the review process. If you list several specialist consultants that deal with other medical issues you have developed alongside or by virtue of your HIV, especially mental health issues. The DWP typically only approach your HIV Consultant. Where they will not wait for this report they may approach your GP.  Therefore only one aspect of your health is evidenced.

I was also concerned. Minded of the DWP guidance & that Mental Health issues were seemingly being ignored.

In my case. I have engaged in correspondence questioning the DBD551 I submitted. Specifically how or why a decision could be reached without medical reports covering ALL my health issues from ALL my consultants.

The response states;

"..... decisions are made based on a persons mobility and care needs and not the disability itself"

so why require any medical report if it is not required to reach a judgement on entitlement?

it then continues;

"You state that I implied that mental health would not be considered part of your current disabilities - this was not my intention.  It is fully accepted that the facts you present with regard to your mental health are accurate and correct.  You are quite right to say that not to approach other consultants you have mentioned would not give a complete picture of your HIV."

The Decision Maker then states she is to seek additional medical reports from my other consultants.

Why is this important?

Your HIV consultant or GP may refer you to other specialists, including mental health, that have more direct knowledge, history & understanding of additional illnesses you experience.  They will of course be keeping your referring medic up to date. Though in my experience this is usually by letter and in very general terms.

Where a decision made has been made on the strength of a GP report only or your mental health or any other health issue you feel has not been properly evaluated.  You may want to consider the above.

Apparently my original DS1500 was supplied from the St. Peter's Clinic. This is worrying as I have never been to any clinic of that name and checking my copy of that document it is not mentioned.  This being one of several errors that, as you can imagine, is generating more correspondence.

I also mentioned in my previous letter. An error made on the medical report submitted, no fault of my current consultant, relating to my date of diagnosis. I wrote asking for this data to be corrected under the obligations of the Data Protection Act. I also copied this to my clinic for correction.  The response implies that the DWP will not be changing this. That I should write to my clinic. So whereas this has been done and the error raised and changed. The DWP will not be asking for another medical report nor changing existing data.  A complaint to the Information Commissioners Office I think now.

As I am completing my DLA556  I am concerned that information I am providing is not being treated correctly or in fact that the information is accurate.

Events you maybe interested in

If you are a patient of the Kobler, Victoria or Nkosi Johnson Clinics. The patient forum, KVN Forum, is meeting on Tuesday 6th May 2008 from 6pm to 8pm. I understand that a person from the Terrence Higgins Trust has been invited to this meeting to give advice on the Disabiliy Living Allowance Review.

"Please note that we are hoping to have representation from Daniel Payet of THT, who will be presenting the THT approach to dealing with DLA review issues. ...... so if you know anyone who may wish to ask Daniel any questions in particular, then get them to come along, or bring those questions / issues with you - spread the word." - Chair, KVN Forum.

If you live in Dorking. James Purnell, Secretary of State, Department for Work & Pensions is on the panel of BBC's Question Time Thursday 8th May 2008. You can apply to be part of the audience by clicking here.

BMA, GMC & Council for Healthcare Regulatory Excellence.

Today I wrote to the British Medical Association, General Medical Council & Council for Healthcare Regulatory Excellence. To raise some of the issues with medics and medical reports that have been mentioned.

Personal Message from June Brown, Actress - EastEnders.

"I am worried that the Disability Living Allowance Review is unfair as the form is tailored towards physical disabilities only-not Mental Illness, HIV/AIDS, Cancer sufferers, nor does it take into account the side effects of the medication on their general health.

Not only will people lose entitlement to Incapacity Benefit, their free travel. motability vehicle but also the Severe Disability Premium of Income Support so they will be forced into the utmost poverty, which can do nothing but harm their condition.

Employers will be reluctant to offer work due to the necessity of frequent hospital visits, periods of admission and bouts of prolonged ill health.

I would ask you all to support this petition in the hope this review is reassessed and to endorse the TCell campaign."

From the main www.hivbenefits.co.uk website.

Thanks to ....

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

We thank :

Todd Carty

Actor & Director - Doctors, The Bill, EastEnders & Grange Hill.

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.

Also I will add them, with their consent to the "Friends & Supports" page of the main www.hivbenefits.co.uk website.

All Party Parliamentary Group on AIDS.

I have heard back from this group today.

"I just wanted to let you know that I had a very comprehensive read of your excellent website - it is a brilliant source of information from the front line. I am in contact with a number of organisations about the DLA issue and that I will be discussing it with Baroness Masham, who you wrote to. What we may end up doing is to write to the relevant Minister asking for improved services to soften the blow for people whose benefit levels are lowered and to help them find sustainable incomes. However we are gathering evidence from as many groups as possible first. I will keep you in touch."

I responded,

"Writing to the relevant minister as you describe is welcome. Thank you.

However I would draw particular attention to the process itself. It is not consistent or equitable in its application. We know it is prone to error.

Only yesterday. Some one asked me if the DWP could go straight to his GP ignoring that he has also given them information on his consultant. He has seen his GP on a very irregular basis over many years. I was asked if they could do this. Apart from an undertaking by the DWP that they would always in the first instance seek a medical report from the HIV consultant. http://www.dwp.gov.uk/medical/med_conditions/hiv-aids/sources_of_ev_hiv_aids.asp further clarifies this action.
He is to get back to the DWP and ask why they are ignoring there own “Sources of Evidence” guidance in his case.

This is just one of many comments I get about the process.

Yes some will not be entitled to the same rates. However this is questionable as we know some, unable to fight for there entitlements. Are to frightened to challenge initial decisions."

Thank you to Baroness Masham of Ilton.

Further to the letters written after the House of Lords debate on HIV/AIDS.

Today I received a very supportive letter from Baroness Masham of Ilton.

She was one of the members who had taken part.

To quote her first paragraph,

"I am very concerned that individual people with long-term conditions, not only HIV/AIDS are not getting the help and support they should. I know from personal experience of the problems people with HIV can have. Everyone is an individual"

Baroness Masham is going to ask Baroness Thornton to look at the issues and acknowledges we have also written to her. Also she is sending a copy of our letter to the All Party Parliamentary group on HIV/AIDS prior to their next meeting that she is due to attend.

On behalf of us all, we very much appreciate your support here. I will also write to thank her.

Thank you.

Effects of "10p" starting rate Tax Changes.

From the BBC News web story -

EFFECTS OF TAX CHANGES

Winners:

• Most people/ with incomes of £18,000+
• Under £18,000 but aged 65+ and therefore eligible for higher personal allowances
• Under £18,000 but with young children and therefore eligible for child tax credits

Losers:

• Under £18,000 and ineligible for working tax credits because under 25
• Retired early and therefore ineligible for higher personal allowances
• Part-timer working insufficient hours to qualify for tax credits
• Different personal circumstances may affect final amounts

Source: PWC & BBC.

Confusing letter from the DWP.

The DWP are sending out the annual letter telling you of your entitlement. My partner received one today. I know someone else has added a comment to a previous post on this.

Having submitted his DLA556 over a month ago he hoped it was his decision. He was panic stricken whilst opening it.

Addressed from "DLA SR Pilot Team"

It says the "Amount of money we pay you is going up" and mentioned indefinitely.

I asked him to give the DWP a call to confirm IF this letter was notification of his award that is expected.

Alas, NO. It was just the yearly letter sent out at the beginning of every financial year. His decision should be due in a few weeks.

Understandably he was upset and took some time to calm - medication helped.

It would have been a good idea if the DWP had inserted a note that this wasn't a decision that that would arrive in a separate letter.

So we continue to worry.

If you need clarification of any letter the DWP send you. Ring them and ask them. They are happy to clarify.

Abolition of 10p starting rate for tax.

It is worth a mention for completeness here.

Those that undertake employment either full or part time. On low wages because of the issues and discrimination around employment & HIV. Or those thinking of returning to work as they have no financial choice.

Will see their tax burden has increased with the abolition of the 10p rate of tax.

For many the DLA payments just about keep their heads above water.

You maybe interested in this interview on the BBC with Andrew Marr & John Hutton MP.

http://news.bbc.co.uk/1/hi/programmes/andrew_marr_show/7333179.stm

also David Blunketts thoughts on this click here.

Feedback from users.

Hello.

Please let us know how and what you think about the website. Is there anything you want to see covered? Email me.

GOOD NEWS.

This morning heard of two more claims that stayed the same. The time frame on average thus far is 4 to 5 months.

Disability benefits and the European Economic Area and Switzerland

Information is now available on the DirectGov website on the position of cliaming Disabled benefits whilst residing in the European Econmic Area & Switzerland.

This follows a statement in the House of Commons by Ann McGuire MP, Parliamentary Under-Secretary, Department for Work & Pensions. She is the Minister for the Disabled.

EAS Rates

You may be interested in the following site's for detail about the Employment & Support Allowance Rates.

"Government Goes Against Spirit Of Parliamentary Promise To Disabled People, UK" from Medical News Today.

"New rates “will force more into poverty”" from Disability Now.

Also the Members forum on Benefits & Work has some good information on this.

DLA556 came in post this morning

Well I was waiting for it as my partner had his. My DLA556 form came this morning. I have scanned this in and added it to the documents available, just follow the "Useful Documents" link on the main web site.

I make this available for information purposes.

Not everyone will be asked to fill in a DLA556. You may get a decision upon assessment of your DBD551 & medical report. You may be asked by letter to provide a little more information. Before a decision is made. Everyone's situation is dealt with differently and is unique to the individual. If you receive a DLA556 you have 4 weeks to complete it. You can call the DWP to ask for more time.

If you get any correspondence from the Department for Work & Pensions. DO NOT IGNORE it. Doing so may affect your benefit.

i-base funding withdrawn.

Posted FYI - http://www.i-base.org.uk

"STOP PRESS: i-Base funding withdrawn: urgent request for letters of support

As this issue of HTB went to press we learned that the London Health Commissioners have withdrawn funding for all i-Base projects.

For the last two years we have received £50k (just under 20% of our annual budget) towards the treatment phoneline and information services, adherence support publications (the BHIVA-recommended treatment passport) and treatment workshops.

Public funding stabilised the project sufficiently to continue to provide HIV Treatment Bulletin and the five i-Base treatment guides free to all individuals and clinics, and to run additional treatment workshops with community groups.

In retendering for services the London Commissioners declined to tender for any existing project and refuses to contribute towards the costs of any i-Base services...

No publications, no treatment workshops, no advocacy training, no phoneline support, no email services, no online Q&A services, no translations of treatment publications, no website.

• The i-Base phoneline has been provided expert peer-advocacy support for over five years, and have the cumulative experience from having spoken to thousands of individual patients.
• Over the last two years the UK-CAB has developed into a representative network of advocates and peer advocates.
• We have distributed thousands of treatment guides - ordered by request from clinics.

The commissioners think that no patients or clinics in London want or need these services.

We think this is unfair and is not reflective of the needs of London patients and clinics.

If you use or have used i-Base services as a London patient or clinic, please email letters of support to:
ray.appleby@kc-pct.nhs.uk
hong.tan@londonscg.nhs.uk

It would help us if you could copy any correspondence to:
simon.collins@i-Base.org.uk

i-Base employs three full-time and four part-time staff for all our projects. Five of the seven staff are HIV-positive. The funding decision, for which we are told there is no appeal, threatens these posts and the services we provide.

Thank you for your support..."

Positive Nation March Issue

The March edition of Positive Nation is out and available on line by clicking here.

This edition has an article on the Disability Living Allowance review.

If you subscribe to this magazine it should be with you in the post or in clinic, shortly.

We would like to thank the team at Positive Nation for covering the DLA in this issue.

Unhappy with your local HIV Services.

Your local Primary Care Trust (PCT) and/or local Council commission local services for HIV. For example you may have a local charity that provides counselling or welfare advice for people with HIV.

You are a service user. Your views shape how these services are delivered.

You can submit compliments or complaints to your local PCT/Council giving your views on the services available in your area.

You can find your local PCT by clicking here. Enter your post code and select NHS Trusts from the drop down menu.

Any letter should be addressed to the "Commissioner for HIV Services".

New website & blog moving....

Hello All,

This morning we put the new website online. This is a proper content management system and brings with it many advantages. It is searchable and allows us to contain the blog and start forums on relevant subjects.

All of the key information is on there including all the information on the old site.. Though certain areas are still being worked on, though these are new in nature.

This is our community resource. So it relies on you and your input to tailor it. Please take some time to look through it. Any comment or enquiries please email us.

Thanks,

John.