Your rights and benefits support

Living with Ehlers-Danlos syndromes and hypermobility spectrum disorders (EDS and HSD) can affect your income, work, housing, care, and daily life. 

This hub brings key support into one place, so you can find trusted advice, understand which benefits might be relevant, prepare for claims or appeals, and feel more confident when asking for the support you need. 

EDS UK pays into the Benefits and Works Guides scheme so that we can provide these to members for free (usually £19.95 per person). You must be a member of EDS UK and signed into your membership account to access them.

View Benefits and Work Guides

Join EDS UK 

Your starting point

EDS UK cannot give individual legal or welfare advice, but we can help you find reliable information and trusted organisations. 

This hub gives you a simple overview of: 

  • Benefits that might be relevant to people with EDS or HSD 
  • Support with claims, reviews and appeals 
  • Legal advice services 
  • Workplace rights and reasonable adjustments 
  • Member-only guides from Benefits and Work 
  • Webinars and external support organisations 

For detailed guides, please visit the relevant support page below. 

Benefits support

There are several benefits that might be relevant if EDS or HSD affects your daily life, mobility, ability to work, care needs, or household income.

Employment and Support Allowance and Universal Credit can offer support if your health condition or disability affects your ability to work

PIP helps with the extra costs of living with a long-term health condition or disability. It looks at how your condition affects daily living and mobility. 

Your PIP evidence diary and descriptor checklist

PIP decisions are made on evidence, not on how unwell you are. The assessor scores what you can and cannot do reliably across 12 activities. This diary helps you record the right kind of evidence in the words decision makers actually use. Keep it for 7 days, then keep going if you can. Real dates and specific examples are what tribunals and case managers take seriously.

The four reliability questions

For every activity, the law says you must be able to do it “safely, to an acceptable standard, repeatedly, and within a reasonable time period” (The Social Security (Personal Independence Payment) Regulations 2013).

  • Safely means unlikely to cause harm to you or anyone else.
  • Repeatedly means as often as the activity is reasonably required.
  • A reasonable time period means no more than twice as long as it would take someone without your condition.
  • Acceptable standard means done properly, not just attempted.

If the honest answer to any of the four is no, that attempt counts as evidence, write it down.

Functional beats diagnosis. PIP is a functional test. A well-drafted Functional Evidence Statement is worth more than a diagnosis letter that does not say what you cannot do. 

What makes evidence strong 

  • Specific dates beat vague statements, “On 14 May I could not stand long enough to cook, I ate cereal instead” beats “I struggle to cook”. 
  • Frequency matters, say “4 days out of 7” not “sometimes”. 
  • Describe your typical day and your worst day, and say which is which. 
  • Aids count, note every time you use a stool, grab rail, timer, list, or another person’s prompting. 
  • Aftermath counts, if a shower costs you two hours of recovery, that is evidence about repeatedly. 
  • Do not minimise, write what actually happens, not what you push through. 

DLA is mainly for children, although some adults still receive it. It can help with care needs or mobility needs linked to disability. 

 

These resources can help you understand assessment guidance, decision-making, appeal processes and tribunal preparation. 

 

Statistics on PIP claimants with EDS and HSD

Statistics for EDS and hypermobility here

Full statistics for all conditions here

 

Legal advice

The Disability Law Service provides free legal advice to disabled people and their carers. They can advise on welfare benefits, housing, employment, community care and discrimination. 

You can contact them by phone on: 

  • 0207 791 9800 

Or by email: 

They also provide factsheets through their website. 

Visit Disability Law Service 

Work and reasonable adjustments

If EDS or HSD affects you at work, you may be entitled to reasonable adjustments. 

Reasonable adjustments could include changes to working hours, equipment, duties, your workspace, communication methods, or the way tasks are managed. 

EDS UK’s employer toolkit can help you explain EDS or HSD at work and support conversations with your employer. 

View employer toolkit

Reasonable adjustments information 

Webinars and video support

EDS UK has hosted webinars with Stuart McGoo covering benefits, PIP, ESA, Universal Credit, reviews and appeals. 

You can also find welfare rights and disability benefits videos through Stuart McGoo’s YouTube content. 

Image of Stu McGoo

External benefits support

Some charities, advisers and specialist organisations can help with claims, reviews and appeals. 

This might include organisations such as PIPPs, local welfare rights services, Citizens Advice, disability charities, or independent benefits advisers. 

Always check what support is offered, whether there is a cost, and whether the organisation is regulated or qualified to give the advice you need.