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.

New letter for you to send to your Member of Parliament (MP)

We have updated the letter you can send your MP - click here. Even if you have written before please continue to raise this issue, especially relevant in the current climate.

You can find your MP by typing your post code in to this website.

"Is Labour abolishing illness"

Picked up from the Benefits & Work website forums I thought is was worth highlighting this article - "Is Labour abolishing illness"- from The New Statesman for all visitors here to read.

Written by "Alison Ravetz is a professor emeritus of Leeds Metropolitan University who writes on housing policy and welfare reform"

The article can be found at http://www.newstatesman.com/200805010024

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.

Feedback South London - Thank you.

Thank you to all at the Feedback South London meeting on the 2nd May for the warm welcome & opportunity to mention the group T_hCell & the efforts undertaken by the team with regard to the changes in the Benefits system.

If you live in South London please check out the website (http://feedbacksl.org.uk) to find out what they do and how you can get involved on matters about your care.

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.

Medical Reports requested by the DWP.

Just to highlight comments received over the last few days.

The DWP when requesting a medical report on you. Under there own guidelines should be approaching your HIV consultant.

As there can be a delay in response from some consultants. Some contributors have noticed that the DWP is sending a second medical report request to the GP.

If this has happened to you. Please let us know.

On the forms you get from the DWP you consent to them approaching any medical practioner that you deal with. For a medical report. If you do not give this consent on the form this could end up with your benefit being withdrawn.

You are not entitled to a copy of the medical report before the DWP have received it only after.

They actively encourage GP's in-particular, not to engage with patients before the doctor submits a medical report on you.

See this article on the Benefits & Work website (you may need to be a member). It links to a document titled "Advice to GP's completing Disability Living Allowance and Attendance Allowance Factual Reports (DWP - Jan 2008)" it states "Your report should be based upon your knowledge of the patient and the medical records. It is not necessary to interview the patient, as any information they provide, especially with regard to mobility and self care may not necessarily be objective." Of course the GP would need to have knowledge of your HIV and how it affects you.

Clearly this can create a problem if your GP doesn't know about your HIV or the specifics of ongoing treatment under the care of your consultant.

If you want to know what your doctor is writing concerning your health to any third party. Even where you have given your consent. You can (in writing) ask your doctor to let you have access to any report, for your review. Before they submit it on to the requesting 3rd party. You can also have access to any medical information held about you under the Data Protection Act.

We are working on the structure of such a letter and will post it to the main site when done.

Some thanks.

Thank you to all those who signed the petition http://petitions.pm.gov.uk/DLA-Review/ it closes on the 2nd May 2008 so there is still time to encourage people to sign. This is just one way of drawing attention to the issues around Disability Living Allowance.

Thanks to James , you know who you are, for the information and your efforts.

Week commencing 28th April 2008 - Quiet.

All,

We are in the middle of a nightmare that is the "Decent Homes" upgrade to our home.

Please bear with us. I will post when I can.

Thanks,

John.

What can I do to help the cause ...

• See June's message below and sign the petition


• Write to your local MP.


• Write to James Purnell, Minister of State - Department for Work and Pensions.


• Write to Ann McGuire, Minster for the Disabled - Department for Work and Pensions.


• Write to your local newspaper & national newspaper you read.


• Write to your local HIV service provider telling them about your experience.


• Challenge any adverse decision - read back through the blogs to understand what this might mean.


• Let us know how you feel, what this means to you and your experience.

Only by building a body of evidence, your stories can we get a fuller picture of the impact.

Those of you that wrote to the editor of Positive Nation. I want you to understand, though your letter may not have been published, it has contributed to the body of evidence.