Claiming benefits and concessions

If symptoms of porphyria are affecting your daily life (including your ability to work), you may be trying to tackle the benefits system for the first time. Benefits available will depend on your personal circumstances and often where you live. The below guides aim to provide a summary of the types of assistance available and direct you to places/resources that will be able to help you more.

Benefits & concessions: EPP

A patient information leaflet containing details of benefits and concessions available for people with erythropoietic protoporphyria (EPP).

Benefits & concessions: Acute porphyrias

A patient information leaflet containing details of benefits and concessions available for people with the acute porphyrias.

Access Cards

A guide on how to apply for an Access Card, which offers increased accessibility to thousands of UK attractions, venues, and events for people with disabilities.

Blue badge scheme

Blue Badges help people with disabilities or health conditions park closer to their destination. The BPA can provide a letter to support your application – just email us at helpline@porphyria.org.uk.

Find out more about how to apply for the Blue Badge scheme and check your eligibility on the GOV.UK website.

Top tips for applying for benefits & concessions

The application process for benefits and concessions can feel complicated and overwhelming. Here are some general points that may be helpful in tackling tricky application forms:

  • Read the questions fully before attempting to answer
  • Do a trial run with a copy of the form – it will help you to make sure all your responses are appropriate and in the right places
  • The way you are affected by your porphyria most likely varies day to day, but when completing forms think about your abilities on your worst days
  • Use your own words and try to remember personal experiences to illustrate your difficulties
  • If you have problems with writing clearly, get someone else to write the answers, and sign to confirm you agree
  • Keep a copy of the completed form (photo, photocopy or scan)
  • It is vital to support your claim/application with medical evidence from your doctor or specialist
  • Ask for additional help, e.g. from the Citizen’s Advice Bureau or medical professionals – some GP surgeries also have access to someone who may help with form filling for benefits. You can also contact us at helpline@porphyria.org.uk for guidance and supporting letters.
  • If you are unsuccessful initially, appeal or ask for your case to be looked at again.

Need more help? Get in touch

If you would like more help with your application for any of the above benefits & concessions, please don’t hesitate to contact the BPA at helpline@porphyria.org.uk.

We can help with information/evidence and we can even support you completing the application if needed. We may also be able to help cover the cost of some applications (e.g. Access Card), for anyone needing additional support.