As reported in the news today. The government is undertaking a consultation on the future of care and support for the disabled and elderly.
You can find out more about taking part at the Department of Health website click here. Though I note at the moment if you click the "Join the care and support debate" link it generates an error page. So you may have to try later.
I note this from the report -
"In 20 years time, the cost of disability benefits could increase by almost 50% (Disability Benefits (DLA, AA and CA) long term projections, DWP Forecasting Division, Nov 2007) and we expect a £6 billion 'funding gap' for social care (PSSRU projections, forthcoming 2008)"
Today we received a letter from Diane Abbott, MP for Hackney North and Stoke Newington.
The letter (with staff details edited out) is availible in Useful Documents on the site or click here.
" .... I also think that this could be highlighted in and Early Day Motion ...."
We will submit a brief to her as she requests and pass our thanks to Diane for her response and efforts.
I wrote to the General Medical Council , amongst others, concerning the issues raised by you in the comments you have made to blog entries or via email.
I have scanned the response and placed it in Useful Documents on this website or click here for the letter.
Click here for the "Good Medical Practice Guide" mentioned in the letter or click here for the information on Confidentiality.
You can find more information by searching the GMC website.
Apologies for not posting often of late I am currently "under the weather."
As well as the letter written to Anne McGuire in March, the response to which is found here. I received an emailed letter from the DWP, Anne McGuire again in response to an email sent 2nd March 2008. All this correspondence is found in the Useful Documents section of this site.
Following the various Statements in the House of Parliament by the Prime Minister yesterday. I would draw your attention to the news page on Benefits & Work website.
"If I have been accused of not listening in the past, I'm listening and I'm learning all the time" - Gordon Brown 30th April 2008
Letter received this morning from Mr. Gordon Brown's office at 10 Downing Street.
Just to let you know. We have seen over the last few weeks the Special Rules Review extended to the over 55 year olds. We have had reports of the DBD551 forms being received by several in this group.
The DWP have left this age group until last.
Presently, many are in the process of waiting for a response on there last submissions.
I pulled this out from the comments to the "over 55?" thread as I want it to have more prominence.
"Unfortunately, this review - whilst under the guise of removing non genuine claims to DLA, whatever they may be - is unconstitutional if one refers to the letter of the law in this matter.
It is a blatant violation of human rights as well as the Disability Discrimination Act as this has not been repealed or amended to exclude HIV being defined as a Disability. My view on this is that, unless your consultant gives your current medical diagnosis as AIDS rather than seropositive, you are on shaky ground in terms of your award remaining unchallenged. I would be interested to see if the statistical evidence from people who have lost their awards bears this out. I would contact NGOs such as CRUISAID as they have legal contacts who would organise a challenge to the government and are not gagged in the same way as THT.
Hello all,
Sorry but yes I have my begging bowl out.
We have been able to do this because many people have given their time & expertise free donating hours of their time. Of course because of issues around illness no one can do everything and time is limited acordingly, we are grateful to those of you who have helped.
However stamps, paper, meeting rooms (etc) cost money. Thus far the expense's for doing this have been met from our own pocket at a time when like many we face the DWP review.
If you would like to contribute to help with these cost's and wish to donate you can make a payment via your online banking. The details you need are :
The Co-operative Bank.
Account name: Tcell
Account sort code : 08-92-99
Account number : 65291663
We will keep full accounts and this is just to help with the costs of stamps, paper, web-hosting, meeting rooms (yes charities charge for this) etc. no one gets paid for this. £5.00 goes along way it pays for many stamps.
Over the next few days we will add a payment method online for anyone who wants to donate by credit card. This will be a "charity friendly" provider.
Thank you.
John.
Any questions please email me.
Hello All,
We are holding a general meeting on the 5th June 2008 from 6pm until 8pm at the Positive Place in Deptford.
There will be a presentation on ThCell the group - who, what we have done, what we want to do. As well as the DLA, what we know. This will be followed by a Question & Answer session. If you would like to attend. Please let me know as it is a small venue and places are restricted.
Help with a Venue.
We plan to undertake a meeting in Brighton in the coming months, along the lines described above. If you know of a venue or have a venue we could use to hold a "meeting" then please get in touch with me. Funds are limited so "gratis" would be greatly appreciated if possible, cheap is also good.
Thanks,
John.
This is a subject that we will come back to from time to time as we challenge the existing situation with regard to giving consent to the Department for Work & Pensions (DWP) with respect to signing the consent component of your forms. If you tick the box refusing this consent it seems, for the time being, that the DWP will simply see this as an end to your process and this may stop your benefit. There are issues around this which we are raising.
However the primary relationship here on this subject is the personal relationship between you and any doctor you see. Your doctor has a duty, as described by the General Medical Council & other representative bodies, to let you know and discuss any report they write on you to a 3rd party.
The DWP when they request a report tell your doctor they have your consent and you don't need to see the report. We also know they advise GP's not to discuss the report with you the patient before it is sent.
In order for you to have control and absolutely ensure your rights to see and discuss any medical report on you requested by a 3rd Party. I have added a sample letter to the Useful Documents section.
"I know, first hand, how much distress and anxiety this review is
causing to men and women with long term conditions such as HIV/AIDS,
Cancer and Mental Illness. There has been great advances in medication
for many of these illnesses and the scientists have our profound
gratitude but there are side-effects and they can be debilitating both
physically and emotionally and deeply distressing. The Government
doesn't seem to have taken this into account. The stigma and ignorance
attached to HIV/AIDS in particular is still very real and the pain this
causes is great. With no long term plans or solutions in place, I fear
that many men and women will be forced onto lower benefits, or to take
low-paid work -given employers reluctance to offer any real
opportunities to men and women with ongoing health issues. I urge
EVERYONE to contact their M.Ps , voicing their concerns and continue to
support the important work being done by ThCell. "
Ann Mitchell, Actress - Widows, She's Out, recently - stage production of Angels in America & EastEnders.
Hope everyone had a good Bank Holiday weekend.
http://www.tcell.org.uk is up and running with details of the next general meeting.
Currently engaged in securing some "pro bono" legal assistance to clarify some points in law which may apply to certain DLA claimants. Will report back when I have more information.
"Thank you for your recent correspondence regarding the termination of the Right Payment Programme. I agree with you that there are concerns regarding the Special Rules review. I will be writing to the Department of Work and Pensions to highlight the points you have made in your letter and will get back to you when I have received their response." - Office of Diane Abbott.
Personally am still somewhat under the weather, chest infection. So I apologise for any day I am not posting.
It is uplifting when every day something arrives , someone has taken time out of their day to help us. I know we are all grateful, I certainly am.
John.
So we got our decisions today and they stay the same. Which seems like good news. However given the avenue of law we are pursing - thanks to one of our team. We believe that the DWP doesn't have the legal right to approach those who claimed before 1999. Of course any decision now makes all claims subject to current law moving forward. So we continue the battle. We believe our original claims should stand moving forward.
Though they said our files were NOT linked. It must therefore be pure coincidence that my partners form when back over 2 months ago and mine 2 weeks ago. With the decisions made within 24 hours and received on the same day.
What drives all of the team is the person in our minds eye that cannot deal with the issues this raised for them. We continue as before to campaign on this. Moving forward we will have to also deal with the Employment and Support Allowance.
So we move forward, together as before. There are still many issues to overcome.
John.
We received a letter from David Cameron's office today. Our issues and concerns have been passed on to the Conservative Work & Pensions team for their further consideration.
Thanks to Mr Cameron & his team for their reply.
I have added this to the links page. However if you want to know what the DWP's own guidance is on HIV/AIDS and who it should be approaching for a medical report than see the section http://www.dwp.gov.uk/medical/med_conditions/hiv-aids/
This information is in the blog but may have become lost in the history. So by moving it to links it is more accessible.
*Edited 3rd June with some clarification from THT. See bottom.
Terrence Higgins Trust have launched a face-to-face service via it's THT Direct arm at Gray's Inn Road (THT HQ) from 2nd June 2008. It offers face to face advice on welfare benefits, housing, employment, immigration & debt.
It is unclear what times this service will operate.
You can see the press release here http://www.tht.org.uk/mediacentre/pressreleases/2008/june/june2.htm
Or the actual web page for the service here http://www.tht.org.uk/howwecanhelpyou/needhelpnow/thtdirect/facetoface/
Telephone number 0845 1221 200 10am to 10pm Mon-Fri, Midday to 6pm Sat & Sun.
"James Brokenshire (Shadow Minister, Home Affairs; Hornchurch, Conservative) | Hansard source
To ask the Secretary of State for Work and Pensions whether any officials in (a) his Department and (b) its agencies were disciplined or dismissed for (i) breaches of data protection requirements and (ii) inappropriate use of personal or sensitive data in each of the last three years for which figures are available.
I would draw you attention to the response by the minister for the Disabled Ann MCGuire on this issue published http://www.theyworkforyou.com/wrans/?id=2008-06-02a.208036.h&s=Disability#g208036.r0 .
Comments to this entry on the theyworkforyou.com website are those of the respective author and not endorsed by tcell.org.uk.
I am minded to mention that when completing any form for new claims or reviews. Where it asks for the date when it first started, this is the date you first realised you had an illness. That is to say the date is the date from which you first noticed the medical condition. This may be several weeks before a formal diagnosis was made. However the form is about you.
I have been engaged in correspondence with Lady Gould. Though we differ on the role of THT. I am greatly encouraged that on the subject of HIV+ people, we have another friend in the House of Lords.
She has taken the time to read our correspondence and reply thoroughly and she has my sincere respect for this.
From her correspondence and passing the information on. There is mention of a programme which will be similar to the "Positive Futures" project that was run by the UKC. I am in touch with the organisation she mentions and await full detail. I will blog on this when it is received.
Also, Lady Gould mentions http://profiles.yahoo.com/positiveactionuk as "a yahoo group solely for people living with HIV. It was formed out of a recent conference for people living with HIV- with the aim of creating a campaigning voice network for the HIV community, not run by any official organisation". I have no experience of this group and my mention is not to be taken as a recommendation. You will have to find out for yourself.
This may sound familiar to what www.tcell.org.uk is trying to achieve. It is the same. Only my picture is all over the place on the website so people know who I am and can approach me when I am in clinic or in a meeting.
I am keen to break down the existing barriers that organisations seem to but in place with regard to supporting one another (largely down to funding). If this method works for you I am pleased.
Thanks to Lady Gould for bring this information to our attention.
John.
In the email this morning I heard of someone who has lost there entire Disability Living Allowance. A process that started in January. It has taken the DWP 6 months to deal with this. Appeal is an option but what fails to be understood is that this brings with it pressure and stress as it involves preparing your case. I always encourage people to appeal and an ORAL appeal rather than written. However I am also very aware of why people would not want to pursue this and fully support any decision they make.
This is the reason I will continue to use my efforts to raise the issues around HIV & benefits. Seeking a fair, properly considered case for those of us for which it is our only income. I may have recieved a favourable decision but I see this as merely one hurdle passed this time around and now campaign for the future.
Though this was prompted by the "Special Rules Review". I become more concerned with those who are making new claims today. As is the nature of any progressive illness, people claim when they need the help. I am concerned at the disparity HIV+ face filling in forms that are very general in nature. I am also concerned with one case that the DWP don't seem to consider the cumulative effect of many illness a claimant has in addition to HIV.
I think I can generalise and say. It is not that we as HIV+ people feel we should be treated differently. But we absolutely demand we are treated fairly and properly. If that means changing the DWP process to fully inform decisions made completely consider matters from a definite perspective of HIV than so be it. They can start with the general nature of existing forms, that skews this perspective.
John.
The HIV clinics of the Chelsea and Westminster Hospital - Kobler, Nkosi Johnson & Victoria clinics. Have a forum for HIV patients that attend these clinic's.
If you want to get involved because you are a patient here or want more information see http://www.kvnforum.net .
Your own HIV clinic may also run a similar forum for it's patients. Ask at your clinic for information if you want to get more involved in your care.
KVN Forum & Terrence Higgins Trust (THT).
At the May 2008 meeting. Lisa Power was to have attended. However her diary commitments left her unable to attend in person but two of her colleague's were sent to address issue's the forum had. It was a robust meeting.
Lisa did say she wanted to attend a future meeting of the Forum to address issues directly. Especially as some of the questions raise, her colleagues were unable to answer as they were on THT Policy.
The BBC
are running a debate on the NHS at 60. You can find and contribute here -
http://newsforums.bbc.co.uk/nol/thread.jspa?forumID=4884&edition=1&ttl=20080605142532
This, as I understand will feed into the Newnight programme.
As we all use and rely on the NHS I mention this for your information.
http://www.thepositiveplace.org.uk/find_us.html
6pm to 8pm 5th June 2008
Thank you to all who gave up their time to attend the public meeting of ThCell last evening.
It was very productive and many topics were covered including the need to hold our MP's to account, DLA & the law, PR and avenues to promote our group etc. . I am glad the subject of appeals was raised.
People need to be aware, and I repeat an earlier blog entry. When you go for appeal. The decision could bring about an even worse award for benefit than the one that brought the appeal in the first place. It is a risk. Whereas I encourage appeal it has to be considered and I would recommend you get proper advice to aid that decision. This is why I fully understand those who do not wish to go down this avenue.
One of the "fronts" on which we have been campaigning is he Right Payment Program. It is one of many campaigns we are running concerning Disability Living Allowance as it effects us and all disabled people. Our main issue is HIV people and Disability Living Allowance whether you are a new claim, subject to review by virtue of the "Special Rules Review" as well as any implication the Right Payment Program has.
10 Downing Street have responded to the DLA Review petition many of us signed. You can find the original text at http://www.pm.gov.uk/output/Page15690.asp
As you can imagine. Running a campaign take money. So far this has been funded out of our pockets. Paper, stamps, webspace etc all costs. We will be making applications over the coming months for grants & funding. In the meantime for those who want another way to contribute you can now do so financially. All contributions are welcome. Just click on the Donate button below.
Looking at costs & security. We looked at various online donation tools and Paypal was the cheapest for us offering us good security.
No one draws or earns a living for contributing their skills & time to ThCell and it's campaigns. It is all done voluntarily, in the main for and by the HIV community for themselves.
Thank you.
John.
We have a Skype number 0203 239 4129 which has a voicemail detailing our next meeting or meeting's with other groups we hope to attend. We would like to be able to deal with people on the phone on a 1 to 1 basis but we don't have the resources to do so.
Emily Thornberry is the MP for Islington South & Finsbury. A number of her constituents have raised their issues over the Disability Living Allowance with her. We have also written in support of these constituents.
I am please to say that one constituent has received responses from Emily Thornberry. Although her letter was addressed to the Rt. Hon. James Purnell MP, Secretary of State Department for Work & Pensions.
She received two responses from :-
Terry Moran, CB. Chief Executive. Pensions, Disability and Carers Service. Department for Work & Pensions. - Click here for letter in Useful Documents Section.
