Non Clinical HIV Services in South London

This is a follow up post to the one John made entitled 'Unhappy With Your HIV Services'

South London (with the partial exception of Bromley) has a unique arrangement whereby all of the PCT's (Primary Care Trusts) and local authorities (Council's) have got together to fund and make provision for a range of HIV services....you can find out what they are funding and who is providing those services for them by going to the 'South London HIV Partnership' website at http://slhp.nam.org.uk/cms1256039.aspx the site also gives details of how to access those services.

If you have any issues with the service you receive from any of the organisations providing services to you for the SLHP and you do not wish.... for any reason... to bring them to the attention of the organisation concerned or to the SLHP directly you can do so via 'Feedback South London' which is service user body.... details of which are available on its web site at http://www.feedbacksl.org.uk/

House of Lords Debate on HIV/AIDS April, 3rd 2008

You may be interested in the content of this debate. Held in the House of Lords on 3rd April 2008. Click here for the debate.

As indicated in the debate. Lord Fowler is a trustee of the Terrence Higgins Trust & sits on the All-Party Parliamentary Group on AIDS.

I've had some correspondence with the All Party Group but await feedback on our issues.

Today, I wrote to several members of the House of Lords that took part in this debate.

Early Day Motion 637 on Disabled Poverty

I found this today. It is an Early Day Motion, number 637. You can find it by clicking here to see if your MP has signed it. If not, please write to them.

"EDM 637


DISABILITY POVERTY IN THE UK

07.01.2008

That this House notes that the Leonard Cheshire Disability report Disability Poverty in the UK finds that disabled people are twice as likely as non-disabled people to live in poverty; further notes that disabled people can experience poverty in a number of ways including financial poverty, poverty of aspiration and poverty of opportunity; further notes that average basic living costs are much higher for disabled people; further notes that disabled people are twice as likely to be unemployed and seeking work than non-disabled people and that disabled people who are not expected to work are often trapped in inescapable poverty; believes that the extent of disability poverty in the UK today is unacceptable; and calls on the Government to make tackling disability poverty a priority."

Tcell group.

Another successful meeting this week.

We are keen to find out what your thoughts are on what we do here. So please drop me an email or comment accordingly. Thanks. If you would like to get more involved also, please email me.

Some events & info you may find useful

Picked up by a member of Tcell from the Tfl Disability Magazine "Getting There".

From the 29th April to 1st May 2008 - Naidex Independent Living exhibition at the NEC Birmingham.

Also there is an Advocacy group you may find useful. Called the Advocacy Resource Exchange they can be telephoned on 08451 22 86 33 between 2pm & 5pm, Monday to Friday.

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.

i-base funding withdrawn.

Posted FYI - http://www.i-base.org.uk

"STOP PRESS: i-Base funding withdrawn: urgent request for letters of support

As this issue of HTB went to press we learned that the London Health Commissioners have withdrawn funding for all i-Base projects.

For the last two years we have received £50k (just under 20% of our annual budget) towards the treatment phoneline and information services, adherence support publications (the BHIVA-recommended treatment passport) and treatment workshops.

Public funding stabilised the project sufficiently to continue to provide HIV Treatment Bulletin and the five i-Base treatment guides free to all individuals and clinics, and to run additional treatment workshops with community groups.

In retendering for services the London Commissioners declined to tender for any existing project and refuses to contribute towards the costs of any i-Base services...

No publications, no treatment workshops, no advocacy training, no phoneline support, no email services, no online Q&A services, no translations of treatment publications, no website.

• The i-Base phoneline has been provided expert peer-advocacy support for over five years, and have the cumulative experience from having spoken to thousands of individual patients.
• Over the last two years the UK-CAB has developed into a representative network of advocates and peer advocates.
• We have distributed thousands of treatment guides - ordered by request from clinics.

The commissioners think that no patients or clinics in London want or need these services.

We think this is unfair and is not reflective of the needs of London patients and clinics.

If you use or have used i-Base services as a London patient or clinic, please email letters of support to:
ray.appleby@kc-pct.nhs.uk
hong.tan@londonscg.nhs.uk

It would help us if you could copy any correspondence to:
simon.collins@i-Base.org.uk

i-Base employs three full-time and four part-time staff for all our projects. Five of the seven staff are HIV-positive. The funding decision, for which we are told there is no appeal, threatens these posts and the services we provide.

Thank you for your support..."

Positive Nation March Issue

The March edition of Positive Nation is out and available on line by clicking here.

This edition has an article on the Disability Living Allowance review.

If you subscribe to this magazine it should be with you in the post or in clinic, shortly.

We would like to thank the team at Positive Nation for covering the DLA in this issue.

Some good news.

Please click here to read some good news on a previous posting.

You will need to access the comments to see the result the lady has received following here review.

Unhappy with your local HIV Services.

Your local Primary Care Trust (PCT) and/or local Council commission local services for HIV. For example you may have a local charity that provides counselling or welfare advice for people with HIV.

You are a service user. Your views shape how these services are delivered.

You can submit compliments or complaints to your local PCT/Council giving your views on the services available in your area.

You can find your local PCT by clicking here. Enter your post code and select NHS Trusts from the drop down menu.

Any letter should be addressed to the "Commissioner for HIV Services".

EAS Rates

You maybe interested in this forum post from the Benefits & Work website concerning the rates of EAS when it comes in October 2008.

Click here.

Also you can see the Written Ministerial Statement from Stephen Timms MP, Minister of State (Employment & Welfare Reform) Department for Work & Pensions by clicking here.

Over the weekend I heard ....

Over the weekend I heard of another successful decision. Though this did go all the way through to the person having to complete a DLA556.

Whereas it is still difficult to gauge the fuller picture with so many still in the process. I would like to think that the work done by the team here & those in the background is making a positive difference.

Please let us know how you are getting on. It helps to build the bigger picture.

Remember everyones case is different. A decision that on person gets depends on their personal situation and may not necessarily apply in your case.

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.

New website & blog moving....

Hello All,

This morning we put the new website online. This is a proper content management system and brings with it many advantages. It is searchable and allows us to contain the blog and start forums on relevant subjects.

All of the key information is on there including all the information on the old site.. Though certain areas are still being worked on, though these are new in nature.

This is our community resource. So it relies on you and your input to tailor it. Please take some time to look through it. Any comment or enquiries please email us.

Thanks,

John.

Shared Experience.

Here is another shared experience. This was sent to in response to the request from Positive Nation for comments on this review a few weeks ago.

Thank you for allowing us to publish this here, also. So we can all share your experience & views.

Sam wrote,

"In common with thousands of other special rules claimants I am currently undergoing a review of my entitlement to DLA. Hundreds such as myself are in a state of acute anxiety and extremely fearful for our future health and circumstance.We have been, at best, poorly represented by the disability organisations empowered with our advocacy and at worst cynically failed by collusive or passive responses to govt. policy and propaganda emerging from the DWP. I have watched with disgust as the publishing and broadcast media have drip-fed a sustained weekly diet of stories, over the past 2 years in particular, of benefit cheats and frauds to the point where all those with disabilities are unchallengingly thus characterised. There is and has always been a resentment of those receiving welfare state benefits and a propensity to envy at our supposed champagne lifestyle, whilst lounging feet - up in front of daytime TV! I suspect we'd all need to be quadraplegic in order to identify as "genuinely" disabled. Our presumed state provided wealth another fiction grasped from the ether.I should like to point out that my own annual income of around £10K enables me to manage my living costs at a level 2/3 below my previous earnings when employed! Moreover the vindictive and distorted rhetoric of successive Secretaries of State charged with the DSS / DWP brief, have apparently engaged, with complete impunity, in a well-orchestrated and successful campaign via their press offices,and slavishly repeated not just by the tabloids but the "discerning" broadsheets and television and radio newscasters, which has cynically reinforced that public perception, with little or no counterpoint.

Where have THT been during this period of sloganeering and stereotyping? Alan Johnson cites evidence that work is good for health while the absence of work is deleterious to our health. "Most" disabled people want to work they declare, and of course the Disability Discrimination Act has made all of that possible the propaganda assures us! David Freud's advice to Government meanwhile is that our own physicians' evaluations of our health should be ignored in favour of that of medical stooges contracted by the DWP and tasked with reducing claimant numbers. Investment bankers are of course the definitive arbiters of all determinants of medical health and what constitutes disability.

THT grew from small beginnings with a brief that depended on the condition many of us have survived long- term, viz. HIV .They have subsumed the many autonomous self-help initiatives across the country to become a monolithic HIV organisation peopled by conferencing careerists, cosying and colluding with the Govt departments that are undermining the safety, health and well-being of all those currently living in terror of their futures. THT state on their website that they are working with the DCS to ensure the reviews are carried out as "sensitively"as posible. Anyone with experience of dealing with the DWP and the newly contracted private agencies knows that this is sophistry- they are a target driven machine who act summarily and arbitrarily, relying on the demoralised and bewildered claimants' exhaustion to deter them from pursuing matters to appeal. Incidentally what is THT's position on the governments plans to tamper with the appeals process in order to limit the number of successful appellants? ( whoops! I mean to make the process speedier and fairer!)

I live in the West of Scotland and the review came without warning (apart from my own longstanding anxiety that this would be in the pipeline). The DWP needed to attack higher rates of the care component of DLA for claimants if they were to also review their Incapacity Benefit entitlement , from which claimants were /are presently exempt.THT and other Disability organisations were forewarned of, and consulted about the DLA reviews but seemingly left claimants at the mercy of an unpublicised agenda.For many outside London support and advocacy is less easily accessed,indeed many are too frightened to do more than sit in miserable introspection whilst events overtake them and I know in my own case a sense of helplessness and powerlessness are predominant.

The assumption that long term survivors of HIV/AIDS or other individuals with disabilities due to different illnesses, are now fit and well enough to be subjected to work focused interviews and ultimately coerced back to a world of work which they may very likely be unable to sustain is appalling.Many of us affected by HIV/AIDS live with currently stable CD4 counts/Viral loads but still with disabling conditions. What are these organisations doing to remind government of the glaring holes in our pensions should we actually reach 65 and after stripping us of our current financial support ? Furthermore, if entitlement to free prescriptions /dental care is removed, as the dominoes fall, many face a choice of finding money they don't have to pay for scripts (only our HIV drugs are provided via our Hospital clinics) in my case this is about 25 items per month currently provided free!

When completing my review form I listed 13 separate conditions but I don't imagine the jobsworths at the DWP will do more than glance at a table of (revised) listed conditions which declare" variable" or "not usually disabling"or "progressive with poor response to treatment" before arriving at an ill-informed conclusion.Or conclude that a CD4 count above 200 means we're all hunky - dory, despite however many combination therapies have gone before, or what side effects and present disabilities are lived with; if you can stand upright you can work!

So congratulations to an agitating voice in the wilderness in the shape of John john@hivbenefits.co.uk and his TCell campaign, a little light in the darkness. And shame on you THT! You should be reminding the government of it's responsibilities to the vulnerable while members of both the House of Commons and Lords squander vast amounts on claims for travelling 1st class by train and air, by taxis,,for staffing expenses and mortgage interest payments on second homes, while those on Income support, if eligible for a community care grant at all, receive allowances guided by costings from an Argos catalogue.These very same honourable members receive payments in keeping with their rarefied status based on the costings of a John Lewis catalogue.

The political parties all nestle safely on the right of centre, and all, aside from those left wingers viewed as anachronistic by their colleagues, support the ever more draconian welfare reforms. We are up against currently one of the most extreme enacters of this in the shape of James Purnell, with his rictus grin and "THREAT" that " for those who do not play by the rules THERE WILL BE CONSEQUENCES !" The disability organisations seem conspicuously silent, like rabbits frozen in headlights waiting for this government "Elmer Fudd" to blast them! 5 Secretariies of State in the past 10 years! And aside from Andrew Smith, all burning with Blairite fury and fervour.while they dismantle welfare provision with unholy Thatcherite zeal.You know it makes sense!

I think it fair to say that a good number of us ,if not a majority, who are undergoing this nightmare exercise feel abandoned .There are too few to stop this particular oncoming train without the support of other voices raised on our behalf. The government has a massive pensions black-hole to fill and a leaky economy with no cash reserves though we remain one of the richest countries in the western world. An indicator of a countries values and morality is how it cares for it's more vulnerable members. We are an easy and fairly defenceless target despised for our "dependency". "Arbeit Macht Frei" indeed, if it doesn't accelerate your demise!"

Thanks to everyone who contributes their comments & stories.

Some reports you may find of interest.

The National AIDS Trust have produced a report titled "From a Positive Perspective: Key Issues for People Living with HIV in the UK

Also on the main page there is a section on "Public Attitudes Towards HIV 2007".

Crusaid, who provide a hardship fund. Have also produced an interesting report "Poverty & HIV 2007"

I highlight these as they maybe of interest.

Right Payment Program & Special Rules.

You may be interested in the following :

DCS Advisory Newsletters. January 2008 mentions RPP & Special Rules.

Also,

The new forums on the Benefits & Work Website concerning the Right Payment Programme & leading disability groups.

Terrence Higgins Trust - THT

Finally THT have given more prominence and some more detailed information on the DLA review on their website . This a change uploaded at the end of last week.

Only 3 months after I first emailed all the agencies I could think of including THT. At the time there was nothing on this review on any website. Which was the reason for starting the blog. THT certainly new this review was coming, over a year ago, given their membership of the DWP Disabilty & Carers Service Advisory Board. Guess it's better late than never. Though I personally believe in preparation and "forewarned is forearmed".

You will be pleased to know that there is nothing new on the THT website that hasn't been covered here in detail already.

However we are grateful that others who will find THT first. Will now at least get some information to help them.

Some of you undergoing DLA review may also have received an IB50 form for your Incapacity Benefit. Please see the following blog entry - Incapacity Benefit review. (IB50 Form) . I mention this as it is not on the THT website at the moment.

If need to submit a request for a revision of a decision or make an appeal see the documents section of the main website for the leaflet "If you think our decision is wrong" (Form DWP GL24).

It is not clear if the advice given by THT Direct . Will be more detailed than when we called, read here.

THT offers direct access to its support services if it is funded by your local council or PCT. Where this is not the case and you live in a borough that doesn't fund THT in this way. Where you have accessed THT Direct. Can you let us know if they are offering more support than merely passing you on to a local agency and collecting your year of birth for funding?

Thanks.

This was posted as a comment but deserves an entry

"Hi to everyone,Im a hiv women age 38, i was diagnosed in 1989...19 yrs ago..to cut a long story short, i am also being reviwed..im currently in reciept of high rate care dla and high rate mobilility dla, when i was 19, i got the benefit straight away via special rules..the last 8 weeks have been very stressfull to say the least..and i have been very depressed and worried that i wont be able to cope if they take my benefit off me...i also feel that i have been made to look like a benefit cheat..which i am certainly not..what i would give to be hiv negertive and have a job( i used to be a hairdresser) i would be getting more money working that's for sure...i have been on every hiv drug going...and there are not many ,more options available to me now..im on a trial drug at the moment...anyway i filled in the dla form..but they was'nt happy with that they also wanted to come out to see me for a medical examination..anyway she came out on wensday, she asked me a few questions about the care i need..i have lipodytrophy wasting, kidney problems, muscel weakness...and mental health probs..that goes with being a long term surviver..anyway all she seemed to be interested in is how i aqquired the virus, she didnt ask me any questions what im like outdoors..she also tried to put words in to my mouth by saying you can turn in bed without help..i pulled her up on it( and told her i felt that she was putting words into my mouth, and know i cant move properly by myself in bed as i have a buffelo hump on my back..she didnt look at the hump..i got the impression she didnt want to touch me..anyway i feel its a disgrase the way longterm survivers are being treated..i would like them to live just 1 week of my life and see how it bloody feels..they havent got a clue...they are just looking at blood results, my blood results are good but i feel like crap most the time due to the side effects of the meds... long term survivers really need to pull together and fight for our writes, sadly those who fought for our writes in the early eighties mostly gay men..are no longer with us..i feel like we are being trampelled all over and nobody as any compassion for hiv people...im sick of hereing..its no worse than being a diabetic( bullshit) this disease can still kill..THERE IS KNOW KNOWN CURE FOR THIS GOD FORSAKEN ILLNESS)if my meds stopped working, i have become resistant to most..i would proberly die in 6 months as there are not going to be any options for me...this as become a nightmare with the added threat i will loose my benefit..and would have to survive on income support alone...does anyone know how long it takes after the medical examination for them to make a disision?..im very stressed out worrying about it..i dont feel like they are not looking at the full picture of somone living with this virus and the damaging effects it as on the body and mind...and the stigma( what employee would hire somone if they knew they was hiv posititve) not many i can tell you.most people who are fortunate to work, are in the closet about there status. "

I would like to thank the person who posted this comment for taking the time to let us all know her story. It cannot have been easy and I salute your courage. I felt your entry deserved more prominence I hope you do not mind. Please feel free to email me - john@hivbenefits.co.uk

Team Meeting this evening.

We had another team meeting tonite. I want to thank everyone who attended for giving up there free time.

The discussion went well and many issues arose which we will seek to tackle over the comming weeks.

We hope you enjoy your Easter.

Tcell.