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.

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.

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.

My situation & DWP time period for claims.

This relates to my personal circumstances and yours maybe different.

The DWP advise that the normal period it takes to review is 12 - 14 weeks to complete.

However they rely on how long it takes for the claimant to return the forms. Also how long it takes your doctor to complete and submit any medical report. At present doctors are inundated with these requests in addition to there already full workload.

Mine started in December 2007.

The DWP will give you an extension in time if you need it to complete any form. Just give them a call and ask.

My situation & DWP legislation used

This relates to my personal circumstances and yours maybe different.

I asked under what piece of legislation this review was taking place.

Reference was made to the Disability Living Allowance Advisory Board (DLAAB) and the report on "special rules".

Reply,

"You query the use of the law, the use of the DS1500 and the review itself. We are permitted to review benefit under Regulation32 (1) of the Social Security (Claims and Payments) Regulations. Although your claim for benefit was awarded for life does not exclude it from any future reviews that we wish to undertake. Further information with regard to reviews is also provided in the annual uprating letters that you should have prevously recieved. The DS1500 refers only to your original application in 199x and will not form part of the current review"

The "uprating letters" are those you receive, yearly. Detailing your award and the levels it is paid at.

I also asked if this review. Given the stress it puts many under doesn't contrivene the Human Rights Act.

Reply,

"This review complies with legislation including the Human Rights Act."

My situation & DWP omitted Viral Load

This relates to my personal circumstances and yours maybe different.

I asked the DWP why they had omited my viral load on their Doctors Medical Opinion.

The response

"I acknowledge the importance of he recording of the viral load data, however the fact it has been omitted from this document will not affect the decision making process"

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.

Our DWP DLA files arrived today.

Note: When the new blog and website are "bedded in I will cease posting to this site. In the interim,

A while ago. You will note if you scroll through the blog. We made a request under the auspices of the Data Protection Act. To the DWP for the information held on us in relation to the Disability Living Allowance (DLA). This comprised photocopied sheets and a printout from the system, mainly payment history. Some data, non medical, is missing and I will chase this.

I will work through this information and post accordingly over the next few days.

Bear in mind that I look at this data as a "lay person".

I note the following having "flicked" through.

• My data shows in handwritting that I was selected for the "Pilot".
• My partners file & mine have a sheet of A4 indicating the other is the partner
• My partners review, from the large print out is also being handled by the DLA Pilot team. Given the links to our files from each others it is likely he was chosen for review because I was selected for the pilot. There is a note that my partners case is also being looked at in my file and vice versa.
• The letter I wrote to Ann McGuire is part of my file and the subject of internal communication. The file was sent to the ministers office.
• Both our original awards comprised of only the "Personal Care" component awarded under "Special Rules". Mobility being different.
• The awards were "indefinately"
• When the DBD551 is submitted & a medical report received from your Doctor. A DBD520SR form is completed by a "Registered Practitioner". This is the opinion of the DWP medic on the information provided. Part 2 comprised two tick box answers. Signed off by a "Approved Disability Analyst".

1. 1st is "In my opinion, this person is still suffering from a progressive disease and their life expectancy is likely to be less than 6 months."
2. 2nd, and selected in my case "From the evidence available to me, it does not appear that this person is suffering from a progressive disease likely to limited life expectancy to less than 6 months." There is then a box for a further explaination. In our case this is limited to an opinion our HIV alone. In my case though I have a Viral Load, this is omitted. In my partners case both his Viral Load and CD4 are noted.

No other information, awaited. Has arrived in the post so far.

Income Support. Just sharing a recent problem.

Today, in the post. My partner received a letter From the DWP "Jobcentre Plus". This followed a telephone call and supporting followup letter.

The initial problem was a change in his payment frequency. A letter was received, a few weeks ago. Stating that, as he had requested a change to the payment frequency, it was now changed. Of course, no change was ever requested.

So we telephoned them. There was some excuse given about his surname (it is hyphenated). We should point out that for the last seven years they have had his correct information. The excuse was suggesting he had just notified them of a "change of name".

Based on previous experience with the DWP. I decided to write a letter. I would advise you to always follow up a call to them with a letter. If only so an "audit" trail is created on your file, but I digress.

The response this morning blames "human" and "computer" errors.

The key bit of information and the reason for this post is :

"The initial problem arose following information downloaded to the Income Support (IS) Computer System from the Disability Living Allowance (DLA) Computer system. The DLA system currently holds your name correctly as a hyphenated surname, the IS system will not allow the name to be hyphenated. This resulted in your Income Support claim being suspended, incorrectly.

When Income Support was put back into the payment the computer system faulted and initially payments had to be made weekly."

This explaination completely different & much fuller than the initial phone call. We didn't know until this his benefit had been suspended.

I post this to show how the computer systems work. The potential problems that might arise. If you have a hyphenated surname "forewarned is forearmed".

On the DLA front. Further to previous posts. We are both still waiting to hear back from the DWP.

Not another blog John!

I have started another blog - Johns Background & Personal Thoughts.

I wanted to share the experience & lessons I have learnt personally as a result of starting this blog & website. The "journey" of my personal growth. I hope it inspires.

It is a place for the information not directly relevant to the DLA review. On that score, I will always post here.

However if you want to know why I started the blog, what motivates me regarding this etc.. this blog covers that.

I am a great believer in empowerment. Of encouraging and empowering people to deal and take ownership of the issues they face. I understand that not everyone can do this. Thats partly why this site exists. But where they can I hope this site helps.

If this inspires one person with the confidence to deal with their own issues than I will have achieved my goal.

The reality of the situation is. With funding being cut. With existing services completely stretched. It maybe that you have to rely on yourself more as time goes by. Channel your feelings, fear & frustration, into empowering yourself & others. You will feel better & it is very rewarding. It will certainly improve your personal well-being.

Our request for information held by the DWP using the DPA

A few weeks ago, under the Auspices of the Data Protection Act. We requested that the Department for Works & Pensions (DWP) provide us with all clerical & computer records held on us in relation to Disability Living Allowance (DLA)

We received a response today.

They will "issue the records" as soon as possible and within 40 days of our request.

They have made no charge for this thus far.

KVN Forum meeting this evening.

The KVN Forum.

This entry concerns patients accessing the HIV services the Chelsea & Westminster Hospital. Namely - Kobler Centre, Victoria & Nkosi Johnson Clinics.

However I post it for general consumption under the auspices of sharing experience.

It was good to see so many at a meeting given over to the DLA issues for patients of these clinics.

Many questions were raised. Of course they encapsulate certain key themes, whats happening?, how do I get help with my form? What will I do if my income falls? etc .... Of course many are anxious & scared.

Some, including myself, tried to give the group the benefit of what we had learned. It is important to note that we and I are in the same boat as everyone. I am not lawyer or a welfare rights worker and cannot tell you or help you to fill in the forms you recieve. All we can do, using the tools at our disposal - Patient Forum groups, Internet, Media etc .., is to share our collective experience to further understand the "picture" here and make the "powers that be" aware.

Existing services are thin on the ground and over stretched. Not everyone is going to be able to get direct help. Whilst this needs to be addressed it must not distract from the core process of providing the information.

In many cases I am afraid. It maybe a case of having to "get off your arse" and do the work yourself. Use this site and others to get the information and research the answers to your questions.

That is the honest truth of it unfortunately.

Engage with your HIV services, take part and raise this at your treatment center's & it's Patient forum. Use these forums and this site to share your experience so we can all learn.

If you need more time. Ring the DWP and ask.

SPEAK to your HIV Consultant when you get the DBD551 form.

Personally I would like to have the time to help people on an individual basis. However that stops me being able to undertake the research that is of general use to us all. Of course I am ill myself & do have a family life. So if you have come up to me at a meeting and I have been unable to give you time or the help you seek. Please don't feel offended. Really the best way you can help is to contribute to the wider agenda use this portal thats whats it here for.

I understand the the forum is pushing back it agenda for the year. To facilitate further meetings on this issue.

It was apparent that many do not have internet access. Positive Nation should go some way to covering that audience.

As mentioned. A meeting is taking place tomorrow for the Kensington & Chelsea HIV Service Users Forum from 6pm to 8pm. The venue is The River House, Rutland Grove, Hammersmith, London W6 9FE.

A letter recieved today....

I have written to many people about our campaign for equity & fairness. Including government ministers.

Full details are found, at the moment, on the about us page on the main web. I keep this diary so you can see the work done by the team on our behalf.

Anne McGuire, Minister for the Disabled, has responded.

Albeit through a member of the DWP correspondence team as it is "not always possible for her to reply personally to everyone who writes to her". I will be uploading the response to the documents page on the web today.

To highlight some points

• Applies to claims awarded over three years ago under "Special Rules".
• Follows the recomendations of the DLAAB "Special Rules Study" after discussions with various groups representing disabled people. Terrence Higgins Trust in our case.
• It was agreed that the initial enquiry. To medical health personnel. Would be addressed to the HIV consultant.
• With only ONE medical report requested at the outset.
• The issues I raised with respect to the introduction of the Employment & Support Allowance warrant a separate reply ?????

Some of the points carry links to other websites so you can see for yourself the background supporting information.

I note that they included my NI number on the response. Though I didn't give it in my initial letter. I assume they have pulled my file. It will be interesting to see what happens to my claim going forward.

Saw my medic today

My medic has received my initial medical report requested. We talked about it, though I pointed out it seemed to matter very little about what was written in any detail as I still expected to receive a DL556 application form as was the process of present.

We agreed what would be written about existing medical conditions.

If you have received the initial form (DBD551) it is well worth getting in touch with your medic to discuss the medical report they will be asked for.

The problem medics face is that they have a legal obligation to tell the truth (as do you). However what they might write maybe interpreted in a way that leads to a loss or reduction on benefit. They are caught. They fully understand the implications of any loss of income in terms of overall health to there patients.

The State almost relies on people giving up at the "first hurdle" with any benefit process. That is why I always advocate you APPEAL any decision where you feel your loss or reduction of benefit is unfair.

Hammersmith & Fulham PCT & THT

According to the accounts for THT 2006/7 Hammersmith & Fulham PCT are listed as contributing funding to THT. The are now re-tendering. I have added information to the links pages on the website.

Is this why THT were so unhelpful in our earlier telephone conversation asking for help?

My Partners DLA(556) form.

We have completed this form and submitted it with additional information. Make sure if you are providing additional information, every sheet has your name and National Insurance Number on it.

I would advise.Iif you get this form. You photocopy it and use a pencil fill it in. Then leave a few days and revise it. You will be surprised at how much you remember when you go back to it. You have 4 weeks to send it back.

Remember much of the information relates to when you have a "bad day".

When you have completed the original. Photocopy it for your records.

I am also going to submit a request under the Data Protection Act to acquire our original application forms & correspondence.

We noticed the following on the form :

• Part 4 : " Do you need help or have difficulties caring for yourself" if you tick Yes it refers you back to the previous page.????
• The form is split between Day and Night. When filling out the Night section. Be aware you may have already given an answer earlier in the form. You may want to refer to a previous answer and add additional information.

I am not advising you or telling you how to fill the form in. You sign a legal declaration on the form. If you are unsure seek advice.

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.

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.

KVN Forum meeting this evening.

The KVN Forum is the patient group giving a voice to HIV patients from the Chelsea & Westminster Kobler, Victoria clinics & Nkosi Johnson Unit.

It is the patient forum which represents me as a patient within it's patient base.

At the meeting held this evening as the "DLA Review" was on the agenda I attended for the first time mainly to contribute to this subject. I am grateful to the forum for allowing this discussion. Also it allowed members to put a face to this blog.

Further more, such was the feeling, that the KVN forum. Hopefully will make this a main agenda issue/topic for another meeting. Thanks.

If you are a patient at any of the aforementioned clinics you can join the forum from their website. Even if you cannot attend the meetings you can still contribute to your care via this forum.

A question was raised by a fellow forum member about when the change was made to the award from " For Life" to "an indefinite period". There was also confusion over whether this was a pilot still or an ongoing process.

Under the post "Various acts of Parliament" the Welfare Reform & Pensions Act 1999 (C.30) Clause 67. Sets out the change from "for life" to "an indefinite period."

For details on the review see the special rules report from the Disablilty Living Allowance Advisory Board. . Note this will download a "pdf" postscript file. Provides the background to the review.

Of course I could not post following the previous entry from my co-author with out mentioning the excellent result that gives some hope to the rest of us.