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.

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."

Useful report from the PSI (Policy Studies Insitiute)

PSI undertakes and publishes research studies relevant to social, economic, industrial and environmental policy. The Institute is a charity, run on a not-for-profit basis. In 1998 it merged to become an independent subsidiary of the University of Westminster.

PSI takes a politically neutral stance on issues of public policy and has no connections with any political party, commercial interest or pressure group.

Reported on "The take-up rate of Disability Living Allowance and Attendance Allowance: Feasibility study" in August 2007.

Some of the points covered maybe of interest to you if you want to understand more about DLA.

Thank you.

To Lord May of Oxford for noting the contents of our letter.

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.

If your DLA Personal Care is reduced to Medium or Lower Rate.

If your DLA personal care is reduced from "higher rate". There are implications for other benefits you receive. Many carry disability components that you may loose. You also loose your exemption to having your Incapacity Benefit reviewed and become eligible for the Personal Capability Assessment. Information gathered as a result of any reassessment of Incapacity Benefit is shared with and may have an impact on your DLA. The information is shared.

With the introduction of the Employment & Support Allowance in October 2008. Incapacity Benefit will be replaced. If you are down graded as described above. You will become eligible for reassessment for this benefit. Initially you will simply move across to this benefit. Then by April 2010 the government want to have reassessed all these claims that simply moved across.

Reducing DLA personal care from the "higher rate" of personal care. Seems to be a mechanism to facilitate the re-assessment of those currently on Incapacity Benefit as the new system "beds in". These re-assessments will happen over time.

The assessments under the Employment & Support Allowance are more focused on what you can do? rather than what you cannot do?. Again any information gathered here may have an impact on any DLA award you have at the time.

I do not mean to cause worry. There are many changes in the pipeline. I just wanted to re-iterate the impact both today and moving forward. So you are aware.

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.

Community Legal Advice

Thanks to K, who sent this information to me.

If you need legal advice take a look at http://www.clsdirect.org.uk/

They offer free, confidential and independent legal advice for residents of England & Wales.

Link added to Debt & Legal advice section.

My situation & DWP mental health.

This relates to my personal circumstances and yours maybe different.

I asked why they had not approached other doctors mentioned on my DBD551.

Response,

" You question why the DBD551 makes no reference or referral to your mental health.

The DBD551 is our inital enquiry form which requests information with regard to your current disabilities, medication and names/addresses/consent to contact any medical profession that you are currently seeing. On receipt of your completed DBD551 we subsequently contacted "my HIV consultant.""

I further note,

"The information provided in the HFR from "my HIV consultant" provides sufficient medical evidence to aid us in our decision making process. If you feel that we would benefit from any other information please feel free to provide this at your earliest convenience"

I have written back again asking why they are ignoring the medical information & consent given to approach other specialist consultants dealing with other medical HIV related issues I have. Surely having given all the current medical information and details of who to approach. I would have thought the DWP would have sought full medical reports in order to reach a proper decision based on ALL the medical information they requested and is available to them.

I know this might cause you to worry. I apologise if it does. I post to make the situation clear and create awareness.

My situation & DWP forms don't fully deal with AIDS/HIV health issues.

This relates to my personal circumstances and yours maybe different.

Prompted by Johnny, this confirms his experience. Also given the general criticism that the forms we are asked to complete are not specific enough to those with AIDS/HIV.

The reply from the DWP was

"You state the the DBD551 and DBD556* do not properly deal with all the health issues that you have in relation to your AIDS/HIV diagnosis.

The aforementioned enquiry forms are representative of customers with disabilities of all types and not specific to AIDS/HIV customers. You are entitled to present information with regard to the needs arising from your disabilities in any way which is suited to you. For example you may wish to send in a daily diary or forward a letter. However, page 9, 26 and 31 of the DBD556* are provided for you to include any other information about the problems you experience day to day"

** Remember any other method you use to submit information must include information on how you cope during the day and at night. Use the forms as a guide. **

* I think this is merely a "typo" and it means DLA556. I have written to seek clarification.

I understand if you have diabetes and make an application for DLA there is a specific form form for this condition. I await confirmation from the DWP. Clearly this begs the question why there cannot be a form tailored more specifically to AIDS/HIV.

Call the DWP to ask if they will accept information in another form. On the rare occasion I have called them I have found them to be helpful.