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Difficulties in Dealing with UK Benefits Agencies 

Many people  state their frustration at trying to explain and categorise the varied degrees of disability associated with hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorder within the constraints of the ‘tick box’ system used by government benefits agencies; something that has arguably become even harder under the new Personal Independence Payment (PIP) scheme, which replaced the Disability Living Allowance.


For example, a person with hEDS or HEDS may be able to walk 20 metres one day, but not the next, they may be able to walk it on level ground, but not on slopes or up and down stairs without considerable risk to themselves, they may be able to walk 20 metres in one direction, but can they walk back again? They may struggle with overwhelming flare-ups of fatigue, debilitating gastrointestinal disorders or dislocate joints at any given moment, all/any of which can mean they may have to take repeated and totally unpredictable amounts of time off work. 

Unlike the “I can but..” style of DLA, PIP is structured in a manner that requires more straightforward “I can’t” answers.’

Instead of the encouragement to explain consequences of activities, the emphasis is a narrower can or can’t.

(Kaliya Franklin)


Some people with hEDS or HEDS are part-time wheelchair or crutches users, either due to symptoms such as fatigue, dizziness, acute injury (e.g. dislocation), or as a preventative measure where there would be at significant risk of musculoskeletal/soft tissue injuries during particular activities or events. They may very much need to park in disabled spaces, but eligibility for a blue badge requires that you be in receipt of the highest mobility benefit, often unachievable if you are someone who dislocates their knees several times a month, but can walk unaided in between.

The amount of care you require can vary in the same way - you may for instance, need weeks of help with washing and dressing if you are going through a bad period of fatigue or joint problems, but then require nothing for several weeks following and be able to go out to a concert or for a stroll in the park.  Close family and friends can find this hard to understand let alone benefits agencies.


Campaigners such as Kaliya Franklin, a disability rights activist who herself has Ehlers-Danlos syndrome, are working tirelessly to get these problems addressed, lobbying government ministers to put legislation and benefit arrangements in place for those with ‘unpredictable’ disabilities, who, under current guidelines, may be classed as 'fit for work' by PIP assessment, when in reality their condition renders employment in a standard environment untenable.  Many people living with long-term health conditions such as hEDS or HSD, would love to work whenever they are able, perhaps in a self-employed role which enables them to pace themselves according to their needs.  These people would, however, need benefits to fill the gaps when they are physically unable.  The current rigid guidelines do not allow for this kind of arrangement, forcing a situation where you either declare you are totally unable to work every day, which may be inaccurate, or that you are 'fit' to work and, therefore, don't require benefits.

Kaliya writes:


'Jobs were elusive – I applied for many, often doing well in the early stages but always being rejected on health grounds and told to reapply ‘when I was better’.  So I found myself in a twilight world of surgery, physiotherapy, pain, medications and part time work, whatever I could find to fit around the demands of NHS appointments and rehabilitation'

‘One crucial clause is missing from this PIP reform, and its absence will dismay disabled people

The current assessment takes a narrow view, asking whether a disabled person can or can't perform everyday activities. This needs to be more nuanced’.


“Whereas DLA encouraged a very honest reporting of symptoms by taking into account the impacts of factors such as pain, fatigue or risk to life, PIP is a descriptor based benefit. A similar style to the feared and loathed work capability assessment for Employment and Support Allowance which assess individuals against fixed descriptors typically based on imaginary work related tasks. A typical answer on all my [old] DLA forms would start “I can do that but…” and then go on to list the risks performing an activity would cause, such as dislocating my shoulder and wrist if I tried to lift a pan. PIP however looks at activities of daily living and mobility in a far more restrictive sense, asking more specifically about supervision and support than the way disabled people typically describe the challenges we face performing everyday activities. Unlike the “I can but” style of DLA, PIP is structured in a manner that requires more straightforward “I can’t” answers.’

Instead of the encouragement to explain consequences of activities, the emphasis is a narrower can or can’t.


This distinction is tricky to understand but important. If something is within regulations there is a direct legal duty to use it as part of the assessment, if it is in the guidance there is a legal duty for the decision-maker to refer to and interpret that guidance. This has important practical consequences; the clarity provided by the inclusion in regulations would mean that contested decisions could be considered more safely, through a reliably objective national framework without the hundreds of thousands of appeals which have become a fixture within the Work Capability Assessment, clogging the tribunal services and placing a further burden on tax payers to fund an assessment system with an almost automatic appeal process built in to deal with the failings of the structure of the assessment.

The one hope that sick and disabled people had for PIP was the promise that the phrase "reliably, repeatedly, safely, and in a timely manner" would be included in the regulations; this would mean that each time an assessor considered an activity descriptor they would be legally obliged to view it through this prism: can the individual perform activities reliably, can they do this repeatedly, can they do it safely and can they do it within a timely manner? (e.g. within less than twice the amount of time the activity would take an average, non disabled adult). This might seem like semantics but when applied to a disabled person’s life it is the structure that holds the frank reporting of symptoms in place. With "reliably, repeatedly, safely, timely manner" I will be encouraged to explain that I can walk a bit, but that ability to walk varies hugely. It is never reliable, requires significant medication to reduce the pain from dislocations enough to do at all, can’t be repeated in any manner that would mean I had practical mobility and is unsafe as I constantly dislocate and often fall thus relying on help from strangers to pick me up and is so slow that elderly people with walking sticks overtake me. Having that phrase embedded in the regulations would also mean much more straightforward and timely decisions could be made in appeal hearings as there would be no ambiguity about the factors influencing ability to perform a task. So it is both puzzling and distressing to disabled people that the Department of Work and Pensions have now refused to make it part of the regulations, instead delegating it to the guidance that decision-makers use. 

Without this vital qualification, sick and disabled people’s greatest fear is that the mistakes of the WCA will be endlessly repeated, reliably causing distress and deterioration in health as individuals the public would consider to meet their definition of "disabled" lose their ability to live independently. We fear predictably timely delays as appeals are heard until eventually, and gradually, some clarity is developed by the precedent established by tribunal decisions. There is a very obvious way to avoid the same cost to lives and the taxpayer’s purse we are still seeing in WCA appeals, include the phrase "reliably, repeatedly, safely, timely manner" in the regulations from the start.'


(Kaliya Franklin is an experienced disability rights campaigner, writer and speaker.)

She blogs at the 2012 Orwell Prize shortlisted blog‎, and was voted one of the top 10 most influential users of twitter in 2011 (@BendyGirl).  More on this topic can be seen at:


In addition to the work of campaigners such as Kalia, schemes such as ‘Work4Me’, run by a co-operative championing self-employment for the many people living with long-term health conditions, seek to make it easier to work from home.  The co-operative has developed a cloud technology platform which provides an ‘online’ office enabling its members to engage with and support one another as though in a physical office space.


For advice and guidelines on applying for state benefits, seek help from for organisations such as SCOPE or your local branch of DIAL. These groups offer disability information advice services  run by and for disabled people and can help you word your application in a way that properly explains the varying nature of your condition (