What is the impact for people living with EB? 

In this blog we share how DEBRA’s Community Support Team can support people with EB during the cost of living crisis.

We know that these are difficult times and the cost of living crisis is a concern for many people across the country. For people living with EB it may mean facing extra costs such as prescriptions, increased household bills or impact your or your family’s working life and income. Equipment such as washing machines, tumble dryers and blenders are used more than the average household. Wheelchairs and electric beds need to be charged. Trips to appointments are essential.

More and more families are turning to DEBRA for assistance and advice — from how to access benefits, grants for washing machines or household goods, travel reimbursement to attend hospital clinics or advice on where to find specialist seamless and non-stick clothing and light-weight bedding to keep warm.

Six ways our Community Support Team are helping

Our Community Support Team are here to help members of all ages and with all types of EB. They have a wide range of skills, knowledge and experience and are often able to respond quickly whilst working out longer term solutions. 

They are experienced in understanding the benefits system and financial support schemes as well as managing the costs of everyday living. They carry out an initial telephone or virtual consultation to assess each individual situation, and the support they provide varies depending on personal circumstances.

 The Community Support Team offer help with...

  • financial queries such as household finances or worries about debt and budgeting;
  • identifying sources of financial help such as school uniform grants, direct payments and personal budgets, Personal Independence Payments (PIP) and other benefit entitlements;
  • talking through what schemes may be appropriate or what to include in applications;
  • choosing the right tariff, finding the best deal, liaising with suppliers or schools, supplying supporting letters, exploring options to cover travel costs to appointments or local area support schemes;
  • suggesting funds that may be available; we also have a DEBRA support grant to help with a range of items in times of need;
  • signposting towards agencies and other sources of useful information from budget planning and price comparison sites to benefits calculators, government support and more.


Find out more about how the team can help.


There are membership benefits too...

Taking a break and getting respite is vital. Families and individual members can use our DEBRA holiday homes at highly discounted rates (50-70% off standard rates) to get respite at more affordable prices and a new grant can offer further help. Members also get a 10% discount in any of the 100 or more DEBRA stores across the country. 


Just a call away...

The Community Support Team provide advocacy, information and emotional and practical support for the whole EB community and all types of EB. In these difficult times, their help could be vital.


Email: [email protected]

Telephone: 01344 771961 (select option 1)