PIP/DLA/ESA – The Benefits Minefield

One of the most common topics for discussion between SIBF members is the complex and worrying issue of benefits. This is certainly the case during the breaks in meetings or between members over phone and email exchanges. In particular these conversations often have a focus on disability-related benefits. This is no surprise given the devastating impacts of viral infection that include reduced capacity to work and earn, combined with all the increased costs of living with a virus.

Typical questions and experiences that have been raised include:

• What is the difference between DLA, PIP and ESA?
• How do you explain living with Hep C when to most people I look fine?
• I’d never applied for benefits before and still don’t think I really understand how it all works.
• I’ve got to go for a medical assessment and I’m really worried about it.
• I don’t want to be a scrounger, but I feel unwell most of the time, so where do I go for help?
• My money has been cut yet I’m no better than when I first applied; I don’t know how to appeal.
• They say I’m fit for work, (I wish I was), but my condition goes up and down so much.
• I’ve just been told that after receiving the new treatment I’ve ‘cleared’ the virus. How do I tell the Jobcentre that? I’m still so unwell due to previous failed treatment attempts?

One way the SIBF can really help the members is to provide a forum for these issues to be discussed and possible solutions shared. This is expected to be a lively topic for the Members’ Forum. As a starter, here are some things to bear in mind when filling in forms or preparing for assessments or appeals tribunals:

• Everyone’s situation is unique to them; including how they are affected, how it makes them feel, what they feel comfortable about writing down, etc.
• The benefits system is under pressure and those with a virus are not alone in being squeezed by the processes involved.
• The decision-making process is based on set criteria. Some of it is about a person’s physical capacity to do things like dress themselves or make a meal. It is harder, but still very important, to highlight the other factors that might stop a person carrying out these routine tasks, such as excessive tiredness, depression and lack of motivation.
• There are ways of completing forms, responding to questions at an assessment, gathering evidence and the like that positively increase the chances of a suitable benefit settlement being awarded.

As an initial response to these issues the remainder of this article will concentrate on the medical assessment (sometimes referred to as the Work Capacity Assessment). You should remember that this is an ‘assessment’. Someone has the job of assessing how unwell (or not) and how capable (or not) a person is. Some of that assessment is done though the written forms to be completed prior to being called to have a face-to-face meeting. The assessor will likely be a doctor or a nurse. They do not make the actual decision whether or not someone receives benefit. Their job is to measure the extent to which a person can or cannot do things: move about, use the toilet, prepare a meal, dress themselves, bathe or shower, get somewhere on their own or with help, communicate, behave in a social setting, cope with difficulties, among a host of other dimensions. The report of the assessment goes to a ‘faceless’ decision-maker who basically turns the report into a set of numbers. If the person ends up with enough ‘points’ they get the benefit, if not, well you can guess the rest.

The challenge for the person being assessed is to know how to express how things are for them without minimising the impacts for fear of appearing lazy or unhygienic (as in, staying in bed some days or not showering every day due to very real psychological debilitation), or not trying too hard to appear a complete wreck by stretching the truth (as in, claiming to be claustrophobic when it’s not actually the case or developing a temporary limp).

Unfortunately all the bad press about these assessments is not without some basis in fact. More than half of all appeals against decisions based on assessments are successful. There is also a great deal of folklore about secret criteria not appearing on any form. Following is some material from an organisation that specialises in supporting people to navigate the benefits minefield. It suggests that there really are additional elements that assessors look for and take into account. For information, these are quoted here:

• Your appearance- whether you are tidy and clean.
• Your skin tone.
• Your manner.
• Your hearing ability.
• Your walking ability.
• Your mood.
• Your ability to concentrate.
• Your ability to stand, sit, move around and use your hands.
• Your ability to bend down to retrieve objects such as a handbag on the floor beside you, or reaching out for an object such as your medication.
• How you stand up.
• How you move to the examination couch and/or get on and off the couch.
• How you use your walking aids.
• How you remove your coat or hat.
• What you are carrying and if it appears light or heavy.
• Whether you show and understand the letters you have with you.
• If you smile and appear relaxed.
• If your breathing is laboured.

(Source: http://www.benefitsandwork.co.uk/)

It is not the purpose of this article to scare anyone. Rather the thinking is ‘forewarned is forearmed’. So a few tips to remember for that assessment:

• ‘Tell it like it is’; if you do have slovenly (untidy) days, be honest
• Make sure you describe what it’s like when it’s really bad, and again, don’t try to look more together than you really are. If you sleep 16 hours most days and miss more than a few baths, you need to say that.
• They will want to know how often you have these worse days
• Non-physical incapacity can be just as difficult to cope with as a physical impairment, but it might be harder to describe, but try
• They don’t want to see reams of print outs about your condition from an Internet search engine, but get as many doctors letters and other pieces of written evidence as you can
• If you have brain fog sometimes, it’s ok to take some written notes into the assessment with you to prompt you when listing medication, all your health issues, etc.
• You can take someone with you into the assessment (it doesn’t involve getting undressed or anything like that), and they can help to back-up what you say, especially if they knew you before being infected or if they support you even just as a friend

Over the next few weeks and months there will be more articles on this topic. However, in the meantime, please feel free to comment on what is included here, and maybe even start a discussion thread in the Members’ Forum.