The benefit process can be stressful one, but with a condition such as hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD), completing the required questions on benefits and grant applications can be really tricky.

 

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. This is something that has arguably become even harder under the new Personal Independence Payment (PIP) scheme, which replaced the Disability Living Allowance.

 

It is hard to answers a pretty rigid set of questions when symptoms and the ability to participate in daily events can fluctuate from day to day or week to week. 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. Individuals may be 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 often requires that an individual 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 an individual requires can vary in the same way - a person with hEDS/HSD may, for instance, need weeks of help with washing and dressing if they 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.

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If you are looking for advice relating to applying for state benefits in the UK, the following organisations are a good place to start:

 

SCOPE: https://www.scope.org.uk/advice-and-support/benefits/

SCOPE: https://www.scope.org.uk/advice-and-support/help-completing-benefit-claim-forms/

DIAL (Disability Information and Advice Line): https://www.dialuk.info/

Disability Rights UK: https://www.disabilityrightsuk.org/about-us

Disability Grants Advice: https://www.disability-grants.org/

Benefits and Work: https://www.benefitsandwork.co.uk (please note that the excellent downloadable resources on this site are free if you are a member of Ehlers-Danlos Support UK - access via the members-only section of the EDS Support UK website at https://www.ehlers-danlos.org/membership-account/membership-levels/)

Citizens Advice: https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/

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Government sites:

Gov.UK:  - https://www.gov.uk/browse/benefits/disability

Disability Advice Project (Wales): https://www.dapwales.org.uk

Mygov.scot (Scotland): https://www.mygov.scot/adult-disability-payment/help-to-apply

NI Direct: https://www.nidirect.gov.uk/information-and-services/benefits-and-money/benefits-and-financial-support

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