Question
Can i-Base help with benefit assessments related to long-term HIV?
7 July 2016. Related: All topics, Living with HIV long-term, Support.
Do you have any information I can present to people such as DWP tribunal judges and housing officers to inform them how people are likely to be effected from the trials for the first HIV drugs and the years of vomiting, diarrhoea and toxic combinations of AZT, ddI, d4t, ritonavir in large doses etc?
I was diagnosed with HTLV3 in 1983 before it was renamed HIV and took part in various drug trials, some of these drugs I do not have a name for as the trials were ended early due to patient deaths.
I have various problems caused by toxicity but when I try to access services and benefits I am often denied the things I need as the people evaluating me think that HIV patients are not effected by the problems I describe. I have been turned down for PIP even though I had previously been given high rate DLA for life.
The assessor and decision maker said they do not expect to see the symptoms I claim to have based on up to date information. I realise that I represent a small population of survivors as I lost all of my friends and partners. I only know of one other person who survived.
I can hardly walk more than a few steps but the assessors decided I was faking it and decided could walk over 200 meters and took my car and disability benefits.
I had veneers applied to my teeth as the constant vomiting took off the enamel so it was done free on the NHS so that I would not be stigmatised. The dentist took them off recently and now I have a row of brown ugly teeth and suddenly understand what being stigmatised means.
I need information to help argue my case for doing cosmetic work on the grounds that my mental health is effected. It certainly is and I no longer socialise.
Answer
Hi
I am really sorry to hear you are having a rough time.
The recent changes in support and benefits have affected a lot of people and many of the decisions to take away support are clearly wrong.
The government polices on changes benefits appear to be a disaster. Examples of where this has clearly harmed peoples lives and quality of live are commonly reported in the press. The policies are changed to reduce costs irrespective of how many people need them.
It is worth appealing every decision, although I expect you might already have done this. I have no information on how often appeal are successful.
Your particular medical difficutlties should be supported by a letter from your doctor, but sometimes even this support hasn’t been enough to retain benefits.
I am happy to draft a letter than outlines some of the issues that affects people who have been HIV positvie for a long time, if this would help. Some people do have residual problems from early treatment. Many of us also have special circumstances as we grow older, having lost so many friends, lovers and partners from HIV related complications, especially before there was effective treatment.
As i-Base is mainly focused on treatment information, I am sorry that we do not have advocacy support for benefits and appeals.
Some HIV organisations still provide this so it is worth contacting the groups closest to where you live – or national organisations – perhaps THT – to see if they can help. Citizen’s Advice Bureau’s offer free legal advice, but many of these have also had financial cuts and run more limited services.
Have you visited either your local councillor or MP surgeries?
Also, THT still run a Hardship Fund and it might be worth seeing whther they can help:
http://www.tht.org.uk/our-charity/Get-help-now/Service-finder/Results-page?freetext=hardship&f=grp1%7cgrp2%7cgrp3%7c
Hi Peter,
I’m sorry to hear that you feel like mainstream HIV organisations have let you down. Thank you though for sharing with us your advise for others who may be having difficulties due to their status, especially people who may have been living with HIV for a long time.
Unfortunately Terrence Higgins Trust has forgotten what they were originally set up to do fighting for the rights and dignity of dying AIDS patients. they are more interested in getting grants from the government lots of donations to keep paying there inflated salaries, long-term HIV survivors are from a period of history that I doesn’t fit with a new policy of safe sex or promoting homosexuality. i am one of forgotten people just like you i been hiv for 28 years . I had a tribunal 2 years nearly all of these HIV uk help groups waste of time go to mainstream disability organisation. I was lucky got a free lawyer seems to be if you go to a tribunal with a lawyer you have more chance of winning it. best advice I could give you would be to say you have full bowel incontinence at least once a week and including your drug related neuropathy should get maximum points to pass it did with me but keep in mind this was 2 years ago. I’m go back for an assessment this week if you look for a website called Kick-Ass it’s a American organisation for long-term HIV survivors it will give you a run down of all ongoing illnesses we suffer good luck with the future
Hi Jon – I also contacted the THT and they replied with the following information:
If you would like to contact Ian Green please speak to the Executive Assistant Mark Kenwright on 0208 812 1850 or email Mark.Kenwright@tht.org.uk. Mark is also dealing with complaints about THT services and complies to our complaints procedure.
Organisations are generally working in difficult circumstances to generally provide good support. When this doesn’t alwasy happen – for whatever reason – then you are right to complain and to ask again.
Please let me know how this goes and I can still help with the letter – though this might take a week or so in order to make sure I have all the details you want to include. (simon.collins@i-Base.org.uk)
Hi – thanks for the futher information. The THT Hardship Fund is likely to have guidelines for what it can and can’t fund. If you are in need, there might be other things it can help with. Just because cases similar to your situation are now more rare, it doesn’t make them less important. Please send me a personal email so we can sort out the letter (simon.collins@i-base.org.uk). I will also send a link to this question to THT in case this prompts a response.
Thanks for your offer to draft a letter for me outlining the problems that are likely after taking part in early trials and being on HAART since AZT, DDI, 3TC, D4t, high dose ritonavir and weekly nebulised pentamodine. Any evidence for the tribunal hearing would be helpful but letters from my doctors have been completely ignored and my most recent diagnosis was made by a mental health nurse working for ATOS and a decision maker for the DWP who claims to have all the information she needs in her leaflet
I have written to my previous MP who was going to help but lost her seat.I have written to new one twice but had no reply. Lewisham CAB is open for 2 hours, 3 days a week. The do not give phone or email advice and the queues go down the high street with people aggressively jumping to the front in desperation.
I was shocked when I approached THT for advice and for an application to the hardship fund. The manager said “We haven’t seen someone like you walk through those doors for years. We don’t provide the services you require so you will have to see if you can find someone who specialises in HIV illness” I asked about getting legal advice and was told they could provide a list of lawyers who were prepared to take cases from people with HIV but there was the usual fees. I asked if I could apply to have some of these fees paid for from the hardship fund and the answer was a blunt “no”.
I made a complaint and received a standard letter that avoided the issues I had complained about as if I were dealing with a utility company. I was involved with THT and NHIVNA in the 90’s and at that time any service that wasn’t provided but was identified would be seriously considered as problems that tended to effect a few people now meant a larger demand in the near future. NHIVNA changed because there were no more traumatised nurses and treatment protocols had been established, so its role now is to diseminate new info.
I am frustrated that no-one at THT seems able or interested in helping – especially when I have to see their PR about high profile funding parties.