KVN Forum Meeting 4th March 2008

Compiled by
CD
Attendees:26
Apologies: 6

The next meeting of the Forum will be held at the Kobler Clinic, Tuesday 1st April 2008 on the 4th Floor of the St Stephens Centre, from 6:00pm to 8:00pm.

This document is a collection of the discussions held by the KVN Forum members at the March meeting of the KVN Forum, which took place on 4th at the Kobler Clinic. These are not strictly minutes of the meeting, but most of the points were loosely captured – apologies for any points missed or any irregularities in the comments. Many thanks to those who participated in the discussion, and thanks also to those who have contributed through the online forum.

Main Agenda

The government review of DLA:

The DWP now has the right to review any benefit that has been awarded to anyone - for any reason. With this in mind DLA has being targeted, and the results of that has been made painfully obvious to many of us.

Existing services that may have helped us to deal with situations like these in the past are now very thin on the ground, and any services left are very over-stretched. Social Workers are few and far between and even those sources of support that are supposed to be able to help have been very lacking - including NAM and THT. It seems the only help at hand is from amongst ourselves, and through those who have already been through the process – this is where this month’s discussion has mainly focussed.

There is help available from places like Citizen's Advice, from this and other Patient Forums, and there is a lot of information on JCW's blog and website - make use of it (website details below).

The discussion took off in earnest, and it soon became apparent by the numbers of people who showed up, that this was a subject that needed to be addressed at many levels. Experiences were soon being shared around the room, and some common threads were identified, they being the speed with which the process is taking place, and the severity of the consequences of the DLA reviews. There were up to seven people in the room with their DLA currently under review, and the rest getting very anxious in anticipation of the same thing about to happen to them. Two forum members spoke of their being assessed, and how they had already had their DLA stripped from them.

JCW was very helpful, and through personal experience was able to field many of queries and issues raised by the forum. It was quickly realised that there were certainly some recurring themes to it all, so it was then considered that it might be best to discuss the appropriate methods of dealing with the process itself, so that at least all reviews could be fairer, and recipients empowered to exercise their right to respond to the process in a manner more suitable to their needs. JCW has done a lot of work on elements of dealing with and managing the process, and has even charted the various stages of the review, so that those concerned could determine where they were in the process, what was due to happen next, and what they should consider if things didn’t go as expected. There is a lot of this type of information on JCW’s website and there is more details posted on his blogs, so all are encouraged to have a look and become familiar with all the information available. His website is at:

“http://www.hivbenefits.co.uk”

There is also a petition that members can sign to register their dissatisfaction with the review in general:

http://petitions.pm.gov.uk/DLA-Review/

&

http://petitions.pm.gov.uk/DLAEquity/

It was then felt that a guide to the stages of the review process should be disclosed, so that members had something tangible to go with, and this could be added to as more information comes to hand. To that end, here is a guide** for the review process, with a liberal sprinkling of suggestions and some ‘do’s and don’ts’.

DISCLAIMER:

PLEASE NOTE THAT THE FOLLOWING INFORMATION** [IN THE BOXED AREAS] HAS BEEN GATHERED FROM THE EXPERIENCE OF OTHERS – THE EXPERIENCE MAY NOT BE THE SAME FOR EVERYONE, AND NONE OF THE INFORMATION SHOULD BE TAKEN TO BE REPRESENTATIVE OF ANY VERSION OF ‘THE TRUTH’. ALL OF THE INFORMATION WAS FREELY GIVEN AND HAS NOT BEEN NOR CANNOT BE VERIFIED BY ANYONE -OTHER THAN BY THOSE WHO VOLUNTEERED THE INFORMATION, BUT WE CAN SHARE THEIR KNOWLEDGE AND THEIR EXPERIENCE OF THE EVENTS AS THEY HAPPENNED, AS WELL AS MAKE NOTE OF THEIR RESPONSES.

**The DLA Review Process:

The DLA reviews begin with a form being sent to the DLA claimant. The form used is called a DBD551, and requires the claimant to forward names of their Consultant, GP and/or carer (as appropriate) and list all current medication being taken and the conditions being treated by those drugs [It is highly recommended you name your HIV Treatment Consultant and NOT your GP - even if you have a GP].

As soon as you received the DBD551, make an appointment to see your Treatment consultant, and discuss with him/her exactly what you are going to put onto your DBD551, and make sure that both his information and yours match up - inconsistencies will be identified immediately by the review process, and will only serve to weaken your case.

The DBD551 form should be returned as soon as you are able. [There has been some note of instances where 'unreasonable delays' were taken by the DWP to indicate that the claimants had died, resulting in their benefit being stopped].

If you need more time contact the DWP and ask for it – in particular do not return your DBD551 until you have spoken to your Consultant, and if it takes three weeks to get to see him - tell that to the DWP and get an extension [ask for confirmation in writing and note down the name of the person you spoke to].

The information returned by your doctor or consultant will, in most cases, trigger a review under the Right Payment Programme (RPP). The DWP decision-maker will usually then request more information from you.

If as a result of the review your benefit entitlement is reduced or withdrawn, you have a right to ask the DWP to review their decision. You will then need to supply the DWP with any information that you feel will help your claim. This must be submitted within 28 days of the date of the benefit reduction date.

You have the right to ask the DWP Decision Maker to forward copies of the medical reports that have been requested from your Treatment Consultant, so do this - you can then challenge any of this information if your Consultant has not given a full report on your condition.

You should then request to have your claim 're-reviewed' [GU25]. Speak to the DWP and request that your claim be ‘re-reviewed’ by another 'Decision-Maker'. It is the next stage in the process and you need to follow that flow.

If this 're-review' does not change the original DWP decision then you have the right to Appeal the decision - do so – do not accept the DWP decision outright if you deem it is incorrect or unfair.

After Appeal, you still have the right to ask for an oral hearing at an independent DWP tribunal. [Legal Aid may be available for people on low income or Income Support, but it should be noted that Benefit claims in general do not qualify for Legal Aid, so get some advice from Citizen's Advice, or visit the www.hivbenefit.co.uk website referred to previously].

It is important to remember:

  • When speaking with your Treatment Consultant, ask him to explain what is wrong with you - in lei man’s terms (or as detailed as you can cope with) so that you are comfortable in repeating this information to others - including the DWP. Ask to ensure that all your medications are listed on his notes - include everything you currently depend on for pain-management as well - even Aspirin.
  • Update your ‘Side-Effects’ diary – if you have misplaced yours they can be downloaded from HIV Treatment information websites – see footnote.
  • We often discount our ailments by "putting up" with intense discomfort and levels of pain, because for us it has become 'the norm', remember it is anything but normal - document how ill you are.
  • Never be too proud to say how much pain you are in - and try to document the frequency of your periods of discomfort - it might surprise you how much pain you actually experience in any day, week or month. Itemise the number and frequency of your appointments to any/all medical services - whether GP Surgery, HIV Treatment and/or other HIV Service Centres - you can include your participation at any Patient Forums, as these are deemed as Capacity Building events, and thus can be considered extremely beneficial to those who take a more holistic approach to treatment and healing processes.
  • Complete your forms carefully - after completion, put them down for a day or so, then come back to them - you might have forgotten some points – you might remember them after a few days.
  • Photocopy all the forms you submit, and any/all letters or accompanying documentation - date and file them.
  • USE THE SYSTEM – if you ignore it you run the risk of the DWP coming to their own conclusions and have your benefits stripped from you.
  • Spread the word - print off extracts from this document or the website previously mentioned and pass them along to those who do not have Internet access. It has been mentioned that the publication, “Positive Nation”, may also help here.

There were many other DLA-related issues discussed at the Forum, and once again, there were some suggestions as to what is happening with those:

  • Incapacity Benefits are running their own review of claimants – some may have received a DBD500 form – this is a currently a separate process, but that may not continue – be prepared. You should continue to receive Incapacity Benefit as long you are in receipt of higher-rate DLA, but if your rate of DLA is lowered, you may become entitled to only the lower rates of Incapacity Benefit as well.
  • Blue Badges – this is a completely separate system – unaffected by receipt of DLA or any other benefits. A GP can recommend issue of a Blue Badge for any patient under his or her care – it is not DLA-dependant.
  • What can we do next?
    • There are some events planned at Dazzle, and Brixton Town Hall (or ‘by’ Dazzle ‘at’ the Town Hall – not sure which).
    • Lobby THT – in particular ask about what their role was while they sat on the advisory board to the consultation process that supported this change in Government policy.
    • Register your disapproval of the changes online at the Downing St petition website - listed above.
  • The KVN Forum will continue the discussion next month, all Kobler, Victoria and Nkosi Johnson clinic users encouraged to attend.

Other Business:

There were other points of business due to be discussed at the Forum, but due to lack of time they will be loosely updated here and forwarded to next meeting’s agenda.

  • Aging and HIV: living with Chronic Illness discussion. This will be pushed back for two months to allow more focus on the DLA issue. • HIV Forum Link – Patient Satisfaction Survey – PD to update if there is time otherwise will be deferred to April/May meeting
  • KVN Website: new phone number [0844 357 1113]; re-branding issue requires further discussion, the Forum should remain ‘KVN Forum’ until a consensus has been reached, via input from all three clinics, as to whether it should be changed and if so what it should be changed to.
  • “Our Rights Now”, pressure group may be able to help with the DLA issue – from information I have read, their remit of Civil Rights for Disabled People includes those disabled through HIV and AIDS - open a dialogue or gather more info? Discuss or approach? Ideas welcome.,
  • KVN Website – there was general consent that the website should be moved onto a web-hosting provider’s server. PD has begun the process, and will present the accounts. The Treasury Sub-Committee will need to sign a cheque to pay for this – Chair will bring the chequebook to the next meeting for counter-signing.
  • Appointments via email: John Pickett presented the proposed new online appointment service to supplement the telephone appointment service last meeting. He was able to update the Chair that there has been some work done on securing the ‘front-end’ interface, to make it more secure, and eliminate the need for service user details to be communicated over the Internet. Further updates to come.

Please forward all points/suggestions for next meeting to the online forum, or directly to CD at declec@hotmail.com and the Agenda will be posted to the online Forum, with any additional points added to it as they are sent in.

The meeting dates for the Year 2008 are as follows:

  • Tuesday 1st April
  • Tuesday 6th May
  • Tuesday 3rd June
  • Tuesday 1st July

Others TBA.

The next meeting of the KVN Forum will be held at:

The Kobler Clinic
4th Floor,
St Stephens Centre
Chelsea and Westminster Hospital

6:00pm to 8:00pm

Refreshments provided.