The Chelsea & Westminster has completed all the outstanding forms.  

Have not heard of a BDB550 form. If the original poster can comment with further information I would be grateful. If the DWP require further information they usually send a DLA556 form.

Do not worry. If you have an issue with how your medical report has been filled in, you can consult your Doctor in the first instance with any enquiries you may have.

The comment is serious and it is difficult to make a case without examples. Which is why supporting information would be needed.  You can request a copy of what was sent from the hospital or from the Department for Work & Pensions under the Data Protection Act. 

I know there are not only issues with us over this process but I do know the medics I have spoken to equally resent this process, not only because of the burden of additional paperwork but mainly the concern over the relationship with patients.

I will pass this comment on to the HIV Directorate - awaiting an answer.

Please comment to this entry, there will be a delay as I have to moderate or email me to john@tcell.org.uk.  

Of course any comments emailed will be strictly confidential.

i have finished my review and as john has previously stated in another thread, unless your consultant tells the dwp that you have a life expectancy of 6 month you will recieve a dla556 this is because your original diagnosis has changed ( you are put on special rules because you are not expected to live 6 months, but if your consultant said on the dwp review form that you will live longer than 6 months you must now apply again for normal rules) i had the same thing happen to me and my specialist at c&w could not have been more forthcoming and helpful, he told me what he had written and sent a copy to me as well as the dwp,i filled in a dla 556 and sent it back and after 2 weeks i got a call saying that my dla would remain the same, i then recieved written confirmation from the dwp, please dont think that  the specialist are not doing their best, its only because of the 6 months part of the form that  the specialist MUST complete that you recieve the dla556,as far as i am aware only people who are seriously ill and have an expected limited lifespan will stay on special rules, all others will have to fill in the dla556 to see if they are eligible on normal rules, i felt i had to defend the specialists at c&w who have for me at least been invaluable, i wish you all the best in your reviews

If you make a request for your file from the DWP you will get everything they have on your record.

Yes you are correct.  Unless you are terminal i.e. not reasonable expected to die within 6 months the DLA556 is automatic. It is as explained to reassess your need to see if you meet the criteria for an award under "normal rules".

If you have other conditions and see other specialists you may find it prudent to insist on medical reports to be requested from them by the DWP.

Yes my experience of C&W is also very good.

The DWP have sent a form called a HFR (T) to the hospital. This form is not subject to the Access to Medical Records Act 1998. The Doctor completes an attached form called DBD520SR(locum) and returns it to the DWP.

If the Kobler refuse to give patients a copy, as it is exempt from the Access to Medical Recors Act 1998, then patients can request a copy of the form directly from the DWP.

Patients do however the legal right to read thier full medical notes because they are subject to the Acess to Medical Records Act 1998.

The hospital will not give a copy of the notes to patients so I suggest that patients contact the Kobler clinic to arrange a time and date to actually sit in a private room ( as these notes are confidential to the patient) and read these notes. I suggest patients take  a note book and sit down and go through their entire medical records as are held by the Kobler Clinic.

Patients can then write down dates, blood counts, doctors comments, reports from other departments, xray results, MRI scan reslts etc. This will create a history of disease progression that will provide evidence for a review of the desciion by the DWP. It is important to remember that if a patient has been  given a clinical diognosis of  AIDS  it cannot be reduced to HIV infection because thier VL and CD4 have improved. These are the Center for Disease Control  guidelines that the World Health Authority comply with.

Steve

For everyone reading this thread please note the following -

I have been in touch with a Senior Member of staff at the Chelsea & Westminster HIV Directorate.

They have been given the link to, and have seen the comments posted here.

There is to be a meeting on Monday of next week,  24th November 2008. Some of the staff are away for the remainder of this week.

When I have feedback following this meeting, I will of course, comment further.

 Have tried to get feedback - phone/email but not heard back as yet.

Just thought I would let you know.

I know several members of staff were away last week and the delay could be merely catching up.

I am in touch with the C&W and will feedback in due course. 

 I have heard back from the HIV Directorate at the Chelsea and Westminster this afternoon.

The important point is that if you feel your medical report is not sufficiently detailed and/or you require further information from your consultant to be included in your review. Get in touch with your consultant and ask for a further letter. They will be expecting patients to ask for this.

So to further expand on the conversation. 

The Directorate has taken, as you would expect, the issues raised on this subject seriously. They have met and have also discussed the submission of additional information, the letter mentioned above, to their direct contact, a medical director, at the Department for Work & Pensions (DWP).

In May 2008 the Directorate enquired from the DWP the detail they required on the medical forms. They were advised to cover CD4 & Viral Load count, Inpatient Hospital admissions in the last year, outpatient attendances and medication taken.

Given the additional burden placed on some doctors by their existing workload and number of affected patients. Some medical reports were completed by a senior doctor in the HIV team pulling the information from the appropriate files. It has been acknowledged that this approach hasn't necessarily picked up on the information that exists in the patient & consultant relationship that often is not recorded.

All the medical reports outstanding have been completed and returned to the DWP now, for cases that are current.

The Directorate is happy to provide a copy of the medical report should you ask for it.

The Directorate has agreed that where more detailed information is sought by the claimant in support of this process. Not only have staff been advised that some may make this request. The DWP are aware that more information may also be sent by them.

I await a further email from the Directorate.

Just a few points to put this in context.  Part of the process here by the DWP is to move people who would no longer qualify for a "Special Rules" award, there have only been 90 in the many thousands processed thus far, to "Normal rules". This determined by if you are reasonably expected to live over 6 months. So it is very likely that unless you currently are expected to die in 6 months you would be sent the DLA556 application pack anyway. Of course that is not to excuse a fuller medical report in the first instance. Your claim does rely on supporting evidence.

Your HIV consultant may not have detailed knowledge of other health conditions for which you see other consultant specialists.  I have an undertaking in writing from the DWP that they cannot get a full picture of HIV unless they also have supporting evidence from your other consultants. You can therefore insist the DWP seek this in the form of additional medical report requests or for expediency you can ask the consultant to provide you with a letter.  If your GP provides some of your care you may seek a report from them also. Your claim will still be paid until this process is complete.

The DLA556 covers your care and mobility needs, day & night.

Filling in the DLA556 form can take some time and if you are say , unwell, you can call the Decison Maker on the phone and ask for an extension to the submission deadline.

If you want your consultant to cover more about your health it maybe a good idea to make a list of "ailments' you have, to take with you, when you see them about providing this further information.

The Directorate assures me it is taking this issue very seriously.

If you are unhappy please let me know to john@tcell.org.uk and I will raise them on your behalf. Otherwise you can complain through PALS at the Chelsea & Westminster.

All,

Thank you for raising your issues and the Clinical Director has come back with a Statement for you.

As always I will feedback any issues you raise to him.

The statement is a .pdf document please click here to view or scroll down.

<!--StartFragment-->

STATEMENT REGARDING COMPLETION OF FORMS FOR

 DEPARTMENT OF WORK AND PENSIONS (DWP)

Dear Patient,

The team at the Chelsea & Westminster Hospital fully understand the importance of accurate information on forms required for assessment by the DWP.  The high volume of requests which we received from the DWP was discussed with them.  The DWP clarified the minimum information required from our doctors and confirmed that if additional detail is required this would be requested.  Because of the high volume of forms, a number of forms have been completed from clinical records by doctors in our team who may not have been directly involved in the care of the patient or, indeed, had not seen them recently.

We would like to reassure patients that the information conveyed to the DWP is entirely accurate and in line with the DWP’s advice on the information required, for example, laboratory results, the history of recent medication and/or any hospital treatments or serious illnesses.

We are very happy for any patient who has had a form completed to have sight of this form.  Requests for this should be made in writing to John Pickett, Assistant General Manager: john.pickett@chelwest.nhs.uk. 

If any patient feels that there is a need for additional information regarding their current condition to be made available on the form, then they should contact their regular Clinic doctor  who will be happy to write a supplementary letter to the DWP Special Rules Panel in order to ensure that they have full access to all of the current medical information provided by the patient.

We apologise if any patients have been upset or worried by the process of this assessment.  We had to meet exacting timelines for the very high volume of requests from the DWP, and we shall continue to do our utmost to ensure that patients receive the correct benefits and have their cases properly and fairly considered by the DWP.

Dr Simon E. Barton

Clinical Director

HIV/Genitourinary Medicine Services

Chelsea & Westminster Hospital

<!--EndFragment-->

If you are a patient if the Chelsea & Westminster HIV Directorate. You have a patient forum you can  use and participate in.

Currently the forum is undergoing a name change, it was formerly known as the KVN Forum.

You can participate in many ways. You can attend the monthly meetings or subscribe to the email service to contribute and receive information.

Please take some time to look at www.kvnforum.net. 

John Hi,

Dont wish to duplicate the things happening with the C & W, though thought we should advise of St. Marys patient forum also.

http://www.wharfside.org.uk/index.htm