Apologies for the long post , it was such a relief to come across this site and realise that I am not alone with this problem, also I would like anyone who has any influence over this recent benfits policy to have a better understanding of how this reveiw has affected me.
I am a 46 year old gay man I was diagnosed hiv+ in December 1991 , and after two concurrent diagnoses of PCP, the discovery of KS lesions , a cd4 count of 50, I was given an AIDS diagnosis in 1995. I was started on what was then called combination therapy , after six months my viral load was not coming down and my cd4 remained the same , my consultant suggested that I have a drug resistance test which was unavailable in the GUM in South Wales where I was treated, so I transferred my care to the Royal London Hospital , where I was able to receive a drug resistance test and discovered that I was resitant to the drugs that I was taking , while there my medication was changed and I was treated aggressively with HAART in order to reduce my viral load and increase my cd4. In terms of managing the hiv infection HAART worked extremely well , the problem were, the side effects that the high dosages and a complex regime of 4 different types hiv drugs and number of others to combat side effects including thalidomide, I was taking 24 pills a day. Since then I have suffered from peripheral neuropathy with extreme pain in both my hands and feet and as yet undiagnosed muscle / joint / nerve pain throughout my body, (unbearable at night) ,coronary heart disease and scarred lungs . Like others I have given up telling my consultant about the side effects, I just get a kind of shrugging of the shoulders as a response . In august 2003 I suffered a heart attack as a result of the medication. Living with hiv, aids, and the side effects of medication has left me physically and emotionally drained . Psycologicaly I really do not know how I have manged to stay sain , like most other long term survivers of hiv ,I watched many friends die , prepared for death myself, lived through horendus side effects and this coupled with the stigma and isolation many live with as a result of living with the virus. I was given DLA in 1994 under the special rules and received a letter in Dec 07 asking for information regarding my illness and how it affected me , this was returned completed , I then received another letter asking for more information from my consultant . I made an appointment with my consultant to explain the review and to discuss my history and what he would put down on the DLA form . My next letter from the DWP was a request for me to attend a medical , I have to say that with all the things that hiv has thrown at me over the years this notification of a medical really affected me , I look OK and was afraid that it would be all that anyone would see and I was right. I went to the medical with a social worker and I was absolutely terrified , I was called to the examination room and walked very slowly to the room , when I sat down I was told immediately that It was 25 metres from the waiting room to the office and I had walked there unaided , the examination took 1 ½ hours and consisted of questions and a physical examination. The doctor was rude and impatient and did not appear to have any idea of the effects of living with hiv / aids and concerned only with a pre written set of questions . Three weeks later I received notification from DWP that I was no longer entitled to any component of DLA. This means a vast drop in benefit , I lose my car and now have to have continual medical examinations to justify incapacity benefit . I hope that this post does not come across as ‘poor me’ a victim of hiv, I have always tried to be as optimistic as I can and make a contribution to society while on benefits by doing voluntary work and by its very nature I am able to work when I can, I recognise the benefit of doing something, I could not work full time and that is what I would need to do to get the same level of income that I have been receiving . How am I going to live on half the income I am currenty on ? How am I going to explain to prospective employers the gap in employment . I have had bad experiences in the past through revealing my status , so I am now paranoid about confidentiality. I will also be totally isolated when my car goes back, living in rural wales , thereis no decent public transport system. I have appealed against the decision , with the help of a social worker and a welfare rights advisor , my last letter from DWP which came this week , stated that it could be at least another 3 months before an appeal date may be set , my stress and anxiety levels are at all time high , and for what? How can the DWP and decision makers be so insensitive to the unique needs of people living with the virus , its side effects and social stigma. I do not know of any long term survivors of hiv who have not had similar problems with thier health .
Yours, C (south wales)
PDF version
Thanks James ... couldn't have put it better myself. You exemplify the whole why of this project. Us helping each other and helping to create a sense of community so thank you (on behalf of us all).
Yes "C" would you be so good as to make contact with me john@tcell.org.uk I will keep what you say confidential unless you explicitly tell me otherwise.
Regards & thoughts to you both,
John.
P.S. Don't worry about the length of the post. It is ok. It is therapeutic to get things off your chest {I hope }
"To C in S.Wales it's with the greatest sympathy that I'm sending this message. I can well imagine how distraught you will be at the action taken and the fight ahead to try and redress the situation. I'm sure all T-Cell supporters will wish you well in this and hope you can maintain your spirits. I am writing in particular because I have a feeling that we know one another and that we both had involvement in SWISH (the HIV support organisation which I think was founded in no small measure due to the efforts of you and one or two others). You will remember me as Ian W. if indeed you are that same person (I hope I am not mistaken in this assumption but if so please forgive the error). I moved to Scotland in 2003/4 and after the last contact your details were lost on a mobile phone that died on me. Anyway this is just to say that since you posted your story anonymously the website organiser can not contact you with my e-mail address to enable you to contact me should you wish to chat , particularly in the light of your recent experiences. However John (the site and campaign organiser) has my permission and is willing to act as a conduit and forward my e-mail address to you should you wish to get in touch with him in confidence.
If I am mistaken and you are not the person I think, again - my apologies, and I repeat I think we all wish you well. The ghastly predicament you find yourself in is one many of us are currently dealing with and are terrified by, and like you this site has turned into a lifeline of sorts. If we could but find the means to all come together, some direct action by way of the previous responses to the Benefits Integrity Project might not go amiss! The wheelchair users chained to railings at the houses of Parliament certainly awoke public sympathy and stymied the then Welfare Minister Frank Field in his mean-minded aims (much to his chagrin) - his recent response in an interview about that episode was to call those protesters "silly people" who, if they could chain themselves to railings could "get a job!" There is clearly a covert embargo on reportage of the impact this is having on hundereds of people of whom you are one, and our stories are not being covered except in a limited forum by the Gay Press.
The broadcast and published media vehicles appear to be closed down to us currently.It kind of makes you wonder whether conspiracy theorists are really paranoid or whether big brother has moved an unseen hand.It feels a little puzzling that no disability organisations appear to be seeking the means to give expression to our plight nationally and alert a currently unsympathetic public to the truth of these welfare reforms and not the fictional diet of untruths that cast us as the feckless scroungers of populist imagination- which of course suits the governments agenda very well indeed! All the best to you C."
Received in the email, thanks C and am pleased as I am sure we all are with your news.
"Dear John / James,
Thank you for your advice and support regarding the recent problems I have had with the DWP, I had a meeting yesterday with the hiv social worker and a worker from welfare rights to discuss my appeal, the welfare rights worker suggested that it could be at least September before an appeal date. Today I received another letter from DWP stating ; You made an appeal against the decision about DLA issued to you on 06/05/08 . We have looked again at the facts and evidence we used to make our decision. As a result we have changed the decision. You are now entitled to Disability Living Allowance, higher rate for help with getting around and higher rate for help with personal care.
I do not know how long the award is for, that is not mentioned in this letter I will let you know when I am informed. I am so relieved at receiving the letter as it saves me from attending an appeal, and worrying about how I am going to manage financially , but what a complete farce , I do not understand what happens there at DWP, I have been through six months of worry and stress for nothing. I am amazed at how little the national and local hiv organisations have helped to keep us the hiv community informed and lobby on our behalf , as I stated in my post I do not see myself as a victim and do not want organisations to treat me as such, but this is the biggest thing to affect us living with hiv and aids since the early 90,s and what are all the workers who being paid inflated salaries doing on our behalf? Shame on THT and others for not giving us a bigger voice, I contacted their helpline first and they were less than useless. I think your site is a great central point for us the hiv community to raise the profile of those living with hiv and aids and the problems we continually face, if there is any way I can help down here in Swansea , I will. I have passed the site address to those I am in contact with locally. I have attached a letter that was given to me by the benefits advisor to give to my consultant , this was completed by him and then forwarded to DWP, I do not know, but perhaps that letter was the reason they changed the decision. If it can be of any use to anyone else please post it on the forum.
Thank you again for the hard work you have put in to the site and I hope it will be as helpful to others as it was for me."
"C" the contributor, wrote to their Dr's to seek clarification on their health position to submit to the DWP. The cover letter is here, the questionaire is here . If you would like to read the whole document in Adobe Acrobat .pdf format click here. Added for information purposes only - 20 June 2009
I have also added this to the list of documents in the Useful Documents section.
Sorry for the delay. I had to edit the document slightly and mainly to remove and identifying information on the source.
Thanks,
John.
I came down with pcp/ hiv/aids in 1994. The story of so many people of the time, I was very ill and awarded DLA at the higher rate for life.
I have gone through many ups and down since , recently I lost my long term partner to KS/AIDS.
I so badly want to return to work and be productive but would not be able to if I lost my D L A.
Any advice, I live in the Brighton area.
You have not specificed you current health situation and of course this matters if you are thinking of a return to full time work. There is much to consider especially in the current economic climate. The focus at the moment for Employment & Support Allowance is what you can do?. It may be useful to sit down with a pen & paper and list just that. How many hours would you be able to do, what your skills are, reflect on the last 18 months and how your health has been. This will at least properly set realistic goals.
You may consider doing some voluntary work with an organisation with whom you share a passion. Or working from home. Something with the flexibility to work around your health issues. You could consider freelancing depending on your skillset.
Education is an option if you have been out of work for some time and need to upgrade or aquire new skills as a first step.
Of course returning to work brings the question of disclosure. Presently although there is discussion about it, unless you inform any potential employer you are disabled you are unlikely to be covered by the Disability Discrimination Act.
Think carefully about the impact to your current benefits and the impact of work. The DWP have Access to work & Pathways schemes BUT I have to say the training I have seen on HIV in the organisation leads alot to be desired and this may create more problems than it solves.
One thing I will advise is speak to other agencies - Terrence Higgins Trust, National AIDS Trust etc to get their views, even if you would normally not approach them. This will feed your decision making, use them.
Finally speak to your medic's.
Its a difficult jump to make but get as much advice from different sources and take the time to think. A search for disabled going back to work may also provide additional sources of information.
By all means come back with any query or issue as you raise a very important topic for which I thank you.
The UK HIV Drug Resistance Database is a central repository for resistance tests performed as part of routine clinical care throughout the UK. Established in 2001, by the end of 2008 over 51,000 test results have been received and curated. Most of these (around 90%) are in the form of viral gene sequences.
A key feature of the Database is extensive patient-level linkage with several clinical cohorts and surveillance databases in the UK. This has allowed analyses which have given important insights into the epidemiology and clinical aspects of HIV drug resistance.
The Database is overseen by the UK Collaborative Group on HIV Drug Resistance. Primary funding is provided by the Department of Health, with additional funding from Bristol Myers Squib, Gilead Sciences, Pfizer, and Tibotec.
Dear C,
I am so very upset to read your post.
This sort of thing is really not supposed to happen.
There are many issues here which I can't easily address but which, when I attended the last T-Cell meeting in Deptford, was a concern that I raised.
I am going to post the step-by-step guide which has worked for my partner who is in the same situation as yourself.
Firstly, request a copy of the medical report which your consultant sent to the DWP.
You need to know exactly what has been said and to whom and by whom.
Next, I would make a complete list of all the medical conditions which you have suffered from over the years, all medications taken, all side effects suffered to date.
Are you on any experimental medications or are you treatment exhausted in any antiretroviral classes (NRTIs, NNRTIs, PIs etc)?
What is your actual disease prognosis if the medication is removed (I am not suggesting that you cease taking your meds just what is your medical status over the next 6 months?)
If you would simply continue being HIV+ then it is arguable that you are in a different category to some patients who have previously had one or more AIDS defining illnesses and who would probably exhibit an AIDS diagnosis within the time period mentioned above if the medication is removed.
This is actually vitally important, not just in terms of appealing the DWP's decision but in terms of the legality of removing your DLA award. Especially if yours was awarded for life pre 1997.
You need to be assessed as still suffering from AIDS and not simply being HIV+.
In addition, if you are having treatment for any of the psychological effects living with HIV, treatment for depression, for instance counselling or medication, then you must mention this in as much detail as possible.
Please remember that the whole point of this review is to get people off ALL benefits and back in the workplace, whether or not you are able.
Your social worker/benefits advisor should be advising you to complete any new forms in a worse case scenario not in an actual day-to-day scenario as your symptoms may not exhibit on a daily basis.
Because you are to appeal your decision, please remember to ask for an ORAL appeal where you can put your case orally to a DWP assessor.
If you could, please email John directly with your telephone number, I am happy to speak to you and try and advise how you go about making your next step.
Also simply to stay in touch so that you don't feel isolated. This is a horrible thing which is happening. It feels like you are being punished for having survived this long and persecuted at the same time. You are not alone and all of us will do our best to help.
James