Memorandum submitted by T Cell (DM 14)



We are a voluntary group run by and for people living with HIV/AIDS in the United Kingdom who are affected by or rely on state assistance and benefit payments.

We operate an online website,, to share information and facilitate our peers ability to contribute with there experience and stories.

This group started in January 2008 given a review of the Disability Living Allowance and has grown to cover all benefits available.

Our submission is based on the experience of our users and our own exposure to the welfare system.


Whereas medical advances have afforded a better long-term prognosis for many. Several, especially those who progressed to AIDS, live with additional medical conditions just as "complex" in terms of life impact.

Enough independent data and study exists in the Public arena that demonstrates continuing HIV/Aid's stigma as well as the performance of the Department for Work & Pensions and the level of challenged decisions.

HIV/AIDS remains a very small minority within not only the disabled but also the wider community. To fully understand HIV/AIDS within the decision making process involves a high resource spend for a small amount of sufferers. Clearly any organisation will make a business decision on the return on investment on training. Targeting resources to give the best return on any investment. This can mean the people living with HIV/AIDS do not have an equitable assessment of any application made, as the Decision Maker will not have undertaken adequate training.

The time spent to consider and make a decision also doesn't allow for thorough and complete assessment of submissions. The forms for many benefits do not completely allow applicants to complete data that would be key to a decision but is not collected. This incomplete initial data collection leads to incomplete or poor decision-making. Submissions often, complex in detail, with additional information submitted can also suffer from a lack of decision making time and understanding.

Process's and system attempt to 'filter' applications by the matching of criterion on application to a standard model. However the nature of HIV is such that as a DNA based illness it is different for every individual.

We have seen many applications subject to an adverse initial decision that have subsequently succeeded, where the applicant has felt "brave" enough to challenge.

We have also seen situations where multiple illnesses have been assessed in the isolation of each other whereas a complete and inclusive view of all the medical issues would have, and on appeal has, demonstrated poor initial decision making and a more rounded impact assessment made.

Stigmatism is remains the greatest barrier to successful appeal & challenge. Often the fear of challenging or the intimation felt leaves many the subject of unfair decision making. Many feel an adverse decision is merely a demonstration of prejudice towards them. Illness and current medical health also often mean many become unable to challenge given the stresses involved. The publication of any successful challenge into the public domain also deters people for fear of recrimination because their HIV is widely disclosed.

One also has to accept that any benefit claimant also faces the current stigma of being "a scrounger" as oft appears in the media generally. Coupled with possible racism, sexism etc ...

The protracted nature of challenging any decision at any stage impacts on physical & mental health and the financial hardship can lead to debt and/or the ability to pay for a healthy diet or even heat during winter. Leading to higher NHS costs for the subsequent health care then required for opportunistic infections. Depression and stress can lead to people 'giving up' and adhering to the treatment and drug regimes can fail.

The nature of HIV is such that it fluctuates, changing daily, weekly or monthly. You can have a good day followed by weeks of bad days. For some informing on changes to a claim could mean notifying of a medical change every few weeks, with the resulting decision making process.

The decision making process is very poor at dealing with Mental Health Issues.

Decision-making needs to factor in the nature of the illness, the change, resistance issues, and damage to immune system, mental impact & stigma.

How effective is the decision making process?  Could it be improved, if so how?

In terms of HIV and any complex medical issue that forms the basis for a claim. Decision-making can only be based on the information the applicant has provided. Often the generic nature of the forms, complexity and length do not cover specific matters of essential detail. Whereas claimants can submit additional information. This can be daunting given the form filling just completed.

Decision's made on the basis of this information are open to be flawed. Once an adverse decision is made and the reasons given only then can it become apparent that specific detail missing would have made the difference in the substance of the decision thus leaving claimants to enter into a more protracted response and appeal process.

In terms of HIV/AIDS we know from Freedom of Information requests that training is not undertaken on a regular (annual) basis. The nature and advances of the illness are therefore lost.

We know from publicly available data analysis that the number of appeals is relatively high.

Some claims will be more straightforward than others. Where complexity enters the process suitably trained 'specialists" should take over the claim. Given sufficient and more time to deal with initial claims.

There is an argument that a state gem is followed. That for any number of reasons a Decision Maker errs on the side of caution and makes an adverse decision. Where this involved disabled people the hassle and stress of a protracted and highly intrusive appeal process often leads to people "giving" up as health issues overtake financial issues. Of course the DWP makes a saving where this happens and the assumption is that the original decision was correct whereas it is merely circumstances for the claimant may have changed to their detriment.

In a few cases we have seen. The claimant has appealed to the final stage, and also submitted a "fresh" claim. Twice the fresh claim has been accepted at the expected decision of the claimant. The appeals also found in favour of the claimant. Subsequently payments were backdated on the original claim and continue to be paid with the "fresh" claim then cancelled. In one case the decision and early appeals didn't consider the health impact of reported illnesses as a whole rather they separated and tested each one against a standard.

This in itself indicates that training and decision-making are not to a unified standard.

One also has to look at the final appeals process and the errors in law made as an indicator of poor decision making as a result of poor up-to-date training in the various legal positions.


Are there sufficient numbers of decision makers and is the training they receive adequate?

In terms of HIV/Aids we know from Freedom of Information requests that training is not undertaken on a regular (annual) basis. The nature and advances of the illness are therefore lost.

Stigmatism for people living with HIV/AIDS remains the major societal barrier to equity. Though the DWP has "equality" policy. I would like to see an independent review of applications to ensure that proper process has been followed.

We know that those who receive the Higher Rate of Disability Living Allowance are exempt from review of Incapacity Benefit. Yet we have seen a great number of people worried that they have been given a "review".

Many quoted the law information we provided. However in many more cases Decision Makers continued the review of Incapacity Benefit although this exemption was in place. This lack of "legal" and DWP process not being applied if an adverse decision was made. Was overturned on appeal once the claimant has sought further advice and appealed on the basis that the review wasn't legal.

This clearly identifying core process training needs.

Looking at the staff survey data published from the DWP the lack of job satisfaction and poor morale impacts on the quality of decision making. Properly motivated and "happy" employees lead to not only better productivity but also improved business standards.

The level of appeal decisions and subsequent effects of those decisions do not factor or filter to decision makers and internal processes in a timely manner.

Is the decision making process clear to claimants?

In a word "No". We exist as an organisation to spread the work with regard to "clarifying" engagement with the DWP.

The DWP for example will accept an alternative submission to the forms for some benefits in the form of a fully written submission. This leading to a more accurate initial decision. In fact most people that have made an application in this manner seem to have tended not to instigate an appeal.

Yet this information is not readily available or clear in the information packs provided with application forms.

Neither is the extension to submission deadlines should a claim be for people for whom illness interferes sufficiently with daily life to reduce the time they having to complete the forms. Again not clear.

If you want to find out how to appeal you need to ask and seek out the information. I would suggest that with every application pack given to a claimant the appeal process is also given.

How effective is the review stage of the decision making process?

We know with the recent review of Disability Living Allowance. The review stage in many cases has exceeded 3 months or more. A wall of silence from the DWP simply feeds stress. Where the DWP is to take a protracted time for any benefit claim it should regularly inform on process and proved an estimated timeframe for a decision to be made.

In complex health related claims. The DWP will often have many sources of medical information to draw on. In many cases the claimant will have given the names of medical specialist consultants as well as the GP.

However it is often the case that where a medical report is required this is only requested from the GP who may not be up to date with the claimants' full health picture.

Any report is then assessed by the DWP's own medical team. A team with no speciality or direct working experience of patients, in practice, for many years.

Is DWP effectively addressing official error?

As in the case described above concerning the exemption for Incapacity Benefit. The DWP still continues to review claimants though they are legally exempt for the reasons mentioned.

There is a complaint process that does seem to work well. Though again if you disagree with a response you also enter into a protracted appeals process.

Where a claimant makes an error they loose benefit. I suggest that where the DWP makes an error it should have to compensate claimants for it. This would certainly ensure better attention to detail when handling a claim.

There is no "stick" for the DWP merely the claimant.

How well does the decision making process operate for different benefits (e.g. ESA, DLA and Housing Benefit)?

The area in which we work is those with HIV/AIDS. Many are claiming DLA and subsequently claim Incapacity Benefit. The primary issue with Incapacity Benefit has been detailed already.

The impact of decision-making for ESA will not be felt until the migration from Incapacity Benefit to ESA happens in a few years time.

However the exemption as it exists for Higher Rate Care DLA recipients doesn't exist for the Support Allowance component of ESA.

The WCA and its basis on "what can you do?" is likely to be at odds with those who have already met the Higher rates of DLA. Whereas the argument is that people have to be assessed in this manner for ESA. The assessment is open to appeal where a DWP (ATOS) WCA assessment contradicts a DLA claim and subsequent medical decision taken by the DWP for the DLA claim. This could lead to the loss of DLA & Support Allowance and protracted appeals. Clearly the DWP will have made a decision in on section on one benefit and the confusion will factor if an ESA claim doesn't support this already established view. Which decision with is incorrect?

How effective has DWP's Decision Making Standards Committee been in monitoring front-line decision making?

Poor when it comes to heavily stigmatising medical issues such as HIV/AIDS. Both in terms of internal staff prejudices and the monitoring as well as the "fitness" of purpose of the application packs, identifying training needs & ensuring continual staff training.

Is decision making taking account of the October 2007 European Court of Justice ruling on exporting DLA, AA and career's allowance?

Our organisation has received no issues concerning this judgement.


How does the appeals system work from the claimant's perspective?

Our organisation has no reported experience of the appeals system as it exists today.

However the existing and old appeals system have one major flaw that acts as a barrier to those with stigmatising conditions such as HIV/AIDS from accessing and using it. The "public" nature of some of the decision of the tribunal and the fear of those exposed to stigma from family, peers etc ... is greater than pursuing justice.

This has and remains the core issue reported to us as the primary and often only reason why people are not appealing an adverse decision.

For those few who have accessed the appeals process they have found it impacts on health given the stressors involved. Is protracted time wise. Doesn't consider that in some benefit claims the financial hardship faced whilst pursing an appeal can cause physical and mental detriment.


How has the introduction of the Administrative Justice and Tribunals Council (AJTC) impacted upon claimants' experience of the appeals process?

As a grassroots' organization involved in and affected primarily by Disability Living Allowance, as it was reviewed last year. We await the impact of the ESA migration of Incapacity Benefit from 2010. Presently we have no reported issues.

Is the timeframe of appeals reasonable?

Any timeframe for an appeal where it involved an individual with a disability and/or complex health needs as the basis for claiming a particular benefit. Needs to be flexible in its timeframe to account for time the claimant looses through dealing with the impact of said disability/illness. This may mean allowing extensions for some.

Is sufficient support available to appellants during the appeals process?

Support is often provided either online by ourselves, by Terrance Higgins Trust or the Citizens Advice Bureau. Again the fear of public exposure for people with HIV/AIDS tends to lend to support being accessed through a third party rather than directly.

Some recorded experience, anonymous.

1."I deal with people via email quiet often and over many months. I am grateful to them for sharing their experience with me as it builds the picture.

I would like to relate to you the following; the person has allowed me to add this to the blog. 

It demonstrates how with determination you can succeed.  This is about a completely new claim and not one subject to review.

A friend of mine related to me that they had submitted a first application for DLA. Knowing the medical issues even an objective comparison to the DWP's guidelines would have given this person an entitlement. But no. They declined his application. This is a trend. The DWP seem to do this on new applications. I also have noticed these are usually successful on an appeal.

So he submitted an appeal. He asked for written. He kept every document, letter & fax he had sent. It was during the time he was waiting for the decision that he shared his experience with me. From the advice gleaned from others I was able to suggest an Oral appeal would have been a better route and to bear it in mind moving forward.

The appeal decision upheld the original decision.  Going through it. It was clear this was flawed. On the basis of no full medical evidence requested by the DWP. But also they had looked at each condition in isolation and not the full impact of ALL the conditions daily.  

Fortunately this person, knowing he was being treated unfairly channelled his anger in to action.  Found himself a HIV welfare rights worker. Then began the process of challenging this decision to the Commissioners.

At the same time he filled in a new claim for the DLA.

A letter came back informing him that the Written Appeal was incorrect and he was scheduled to have an Oral appeal in August.

Then this week he received a decision on his new second claim. He was awarded Higher Rate Care & Higher Rate Mobility - which is what he was entitled to given the DWP guidelines.

All this over about 9 months."

2." "I've put in for a revision, along with numerous supporting letters from the consultant, G.P etc and the Citizen's Advice legal people have also written in detail to DWP supporting my request. It is just a case of waiting on that now.

Meanwhile in consequence of being no longer disabled!!! (Have DWP found a miracle cure for HIV?) and losing my entire income support; although I am now entitled to Council Tax benefit, the local authority want 770 from me that Income Support were going to pay upto next April.


....the DWP fraud department has now written to me saying I was overpaid income support between 2002 - 2007 because my circumstances changed. (They haven't from 1994 until now when DLA was removed), and want me to pay this money back. Just a mere 20294.44, they reckon!
It's going to take them a mighty long time to extract all that from the 62.50 Severe Disablement Allowance I'm now left with. It is so ludicrous it is laughable.

All this as a result of losing DLA." Since re-instated.

3. "'I was talking with a Benefits Advisor this morning at my local hiv support service and mentioned to her that I had received an IB50 Incapacity for Work Questionnaire.

She queried the fact that as I was on the Highest Rate of Care Component on DLA that this was not necessary to complete. She then accessed on the web the regulations - link below

She then pointed out that under Part II Chapter III Paragraph 10 the first caluse under 2(a) states

exemption due to "that he is in receipt of the highest rate care component of disability living allowance".

Subsequently we phoned my DWP office and when I spoke with the agent he at first said that he was unaware of this exemption but on checking came back on the phone and said that this is correct and that I should ignore the form and that he would be advising Medical Records who would amend my records accordingly - and that I would be receiving a letter outlining my new next year benefit (I intend to check up again in a week's time by phone just to be sure that it has been amended as stated).

So it may be that you were/are aware of this, but thought that it may be wise to put it out there for anyone else in the same situation.""


4. "Hi to everyone, I'm a hv cut a long story short, I am also being reviewed..I'm currently in receipt of high rate care dla and high rate mobilility dla, I got the benefit straight away via special rules..the last 8 weeks have been very stressful 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 negative 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..I'm 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 Wednesday, she asked me a few questions about the care I need..I have lipodytrophy wasting, kidney problems, muscle weakness...and mental health probs..that goes with being a long term surviver..anyway all she seemed to be interested in is how I acquired the virus, she didn't ask me any questions what I'm 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 can't move properly by myself in bed as I have a buffalo hump on my back..she didn't look at the hump. I got the impression she didn't want to touch me..anyway I feel it's a disgrace the way long-term survivors are being treated. I would like them to live just 1 week of my life and see how it bloody feels..they haven't 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 survivors 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 trampled all over and nobody as any compassion for hiv people...I'm 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 dicision?..i'm very stressed out worrying about it. I don't feel like they are not looking at the full picture of someone living with this virus and the damaging effects it as on the body and mind...and the stigma (what employee would hire someone if they knew they was hiv positive) not many I can tell you most people who are fortunate to work, are in the closet about there status."

Information & Studies referred to.

The Social Security (Incapacity for Work) (General) Regulations 1995 Statutory Instrument 1995 No. 311

DWP Staff Survey 2009

Tribunal Service Annual reports (2007/8, 2009/10)


Essentially it always comes down to resource. However better decision making with the necessary investment in regular training and updating staff on new case law ought to pay off with less use for the appeals process.

HIV/AIDS affects a minority of people. The educative and resource needed to ensure equitable treatment of any claim for any benefit can be prohibitive yet we who have HIV remain one of the most vulnerable in society today. Dedicated HIV specialised teams, independently assessed and monitored given appropriate decision making time would lead to better initial decision making. There is nothing worse when someone you speak to doesn't understand the difference between AIDS & HIV or even how they relate to each other.

Application packs for any benefit claim should include full information on how the claim is processed as well as the appeals process.

Offering HIV+ people anonymity should they appeal would encourage more to challenge adverse decisions and feed the "learning" and training programs internally. This would also start to build trust. There needs to be an acceptance that HIV stigma prevents and remains a barrier to justice in the benefits system.

For complex HIV cases the perception that is it is similar to Diabetes is misleading and denies a full and proper consideration of benefits applied for on health grounds. You can have diabetes as well as or because of HIV and its long-term affects; I have yet to hear of diabetes leading to HIV. Medical reports from specialists requested as the "norm" rather than the GP where supporting medical evidence is requested.

Independent evaluation and review of random claims to ensure a quality and standard of decision making is attained. Where it comes to complex medical issues larger randomised samples ought to be done.

Incentivise staff on the quality of decision making that is reward them for decisions that, through review and lack of appeal or complaint, deemed right.

Balance the "stick", compensate claimants for incorrect decision making, over turned through appeal. For the protracted time, stress, financial hardship & sometimes health impact. Compensation in addition to any back payment due. This would incentivise the DWP to ensure better data collection, more thorough investigation & better decision making for fear they may face financial hardship if they do not.

September 2009