Benefits and financial support you may be eligible for if you are living with EB
Living with EB can be a financial burden. Please note although CST are not professional financial advisers and cannot give financial advice, we can support people living with EB to access benefits, DEBRA support grants and signpost to other agencies to help reduce your costs.
Contents
EB financial advice and support. Information about how the DEBRA Community Support Team can help you with any financial queries or debt problems.
EB financial grants. Information about the financial support grants we offer to support our members’ physical and mental wellbeing during times of financial hardship.
EB disability benefits. Our separate page on information about the benefits that could be available to support you, a family member living with EB, or someone you care for who has EB.
Support with EB prescriptions. Information about any financial assistance that may be available to support you with prescription charges.
Support for EB carers. Information about any financial assistance that may be available to support EB carers.
Housing and home improvement support. Information about housing benefits that you may be entitled to.
Help with paying bills. Our separate page providing link to Citizens Advice information and resources to help you manage your finances and bills.
EB financial advice and support
DEBRA’s EB Community Support Team is here to help you with any financial queries or debt problems you may have and can point you towards other agencies, and other useful information that could help ease your financial situation.
The team can also support you with the application for benefit schemes, which can often be long and complicated, they are very experienced in the application processes for different benefits and are very happy to help. Please contact us today on 01344 771961, option 1 or contact your EB Community Support Manager directly.
As well as talking to our team, we also have funds available to support our members in times of financial hardship.
We know that living with EB can create a financial burden for many in the EB community, and the financial impact is only being worsened by the current cost of living crisis driving higher costs for essential items including food, energy, fuel, and prescriptions.
Please be reassured though that you are not on your own; our EB Community Support Team is here to help our 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.
Please see below for six ways in which the DEBRA EB Community Support Team could help support you during the current cost of living crisis:
- with financial queries such as household finances or worries about debt and budgeting.
- by identifying sources of financial help such as school uniform grants, direct payments and personal budgets, Personal Independence Payments (PIP) and other benefit entitlements.
- by talking you through what benefit schemes may be appropriate and with what to include in applications.
- by choosing the right tariff for utility bills (like gas and electric), finding the best deal, liaising with suppliers or schools, supplying supporting letters, exploring options to cover travel costs to appointments or identifying local area support schemes.
- by suggesting funds that may be available. For example, we also have DEBRA support grants available to help with a range of items in times of need.
- by signposting towards agencies and other sources of useful information from budget planning and price comparison sites to benefits calculators, government support and more.
Taking a break and getting vital respite is so important but this can prove to be cost prohibitive for many when the cost of everything else is going up. However, by being a DEBRA member, you can stay in one of our holiday homes located across the UK at highly discounted rates, which is typically 50-70% off the standard rate. Please visit our holiday homes page for more information and to book your break.
Also, DEBRA members are entitled to a 10% discount in any one of our 90+ DEBRA charity shops located throughout England and Scotland, meaning our already great value pre-loved fashion, including shoes and bags, household items, and electricals are available for you to purchase at an even more affordable price. Any purchase you make also directly benefits the wider EB community.
EB support grants
We offer a variety of financial grants to support our members’ physical and mental wellbeing during times of financial hardship. Members can apply for grants covering a wide range of items including travel and accommodation, to help attend vital EB specialist healthcare appointments, contributions towards a stay in one of our holiday homes, and specialist products to help alleviate some of the symptoms of EB.
Our emergency grants are there to support our members in urgent situations or when they are unable to purchase the everyday essentials needed to help manage the symptoms of EB.
Examples of how these grants can help:
- to relieve physical and psychological stress.
- to increase independence and ability to function day-to-day.
- where financial hardship prevents the purchasing of essential items.
- to be safe and receive essential comfort.
We know from the EB insights study that many of our members struggle with the cost of attending appointments at the NHS EB healthcare centres of excellence. Depending on where you live in the UK, the location of these centres in Birmingham and London can mean long journeys and extra expense to cover fuel, parking, accommodation etc.
We are working with the relevant healthcare authorities to improve the regional provision of specialist EB healthcare and offer grants today to support our members with travel costs so that they can access this vital specialist EB healthcare that already exists within the NHS.
We offer grants to support our members with some of the daily costs that can be incurred during a hospital stay. These grants apply to stays of between 2 to 14 nights in a UK hospital and could cover the costs of drinks, newspapers/magazines etc.
The nightly allowance for stays of 2-5 nights is £5 per patient per night, £25 for a full week, and £50 for two full weeks. Grants for longer stays and exceptional circumstances are considered on a case-by-case basis by the DEBRA Community Support Team.
You can directly apply or ask your EB clinical nurse specialist to apply on your behalf. Payment will be made at the end of your admission, however if there is an urgent need for payment sooner you should contact your DEBRA Community Support Manager.
Please note anyone aged 18+ in receipt of Universal Credit should notify the DWP if they are admitted to hospital for over 28 days as they will no longer be entitled to the care element.
We offer grants to enable our members to:
- engage in, support, and enjoy DEBRA events and activities such as our annual DEBRA Members’ Weekend.
- attend events in the role of a special guest supporting fundraising initiatives and raising awareness of EB and DEBRA.
We know how important it is for members of the EB community to have respite and quality time together which is why we offer grants to help reduce the cost of staying in one of our seven DEBRA holiday homes located across the UK. These grants are for those members on a low income or experiencing difficult financial circumstances. We may ask about your financial situation as part of the decision-making process.
If you are unsure whether you are eligible, please contact your Community Support Manager.
There are specialist products available that can help alleviate some of the symptoms of EB, and we can provide grants to help fund some of these items.
Our Community Support Managers will get to know you and your needs and will be able to advise of which products may help you.
We try not to place rigid restrictions on what the grants can be used for but below are some examples of DEBRA grants awarded for specialist items:
- Fans and ventilation devices to ease the symptoms of EB in the warmer summer months.
- EB friendly products including specialist baby grows and feeding bottles, soft bristle toothbrushes, soft seam clothing and bedding, cooling gel pillows, and food blenders.
To check the eligibility criteria for a DEBRA financial support grant, please read our terms and conditions below.
For any questions on DEBRA financial support grants please check our frequently asked questions, alternatively please contact the DEBRA EB Community Support Team.
EB disability benefits
Living with EB creates its own financial burden but there is support available both through DEBRA, with the support grants we offer, and through disability benefits.
Please visit our separate page on disability benefits that could be available for you, a family member living with EB, or someone you care for who has EB, to help ease the financial impact of living with EB.
You might be able to get free NHS prescriptions which could help with the cost of dressings, dental treatment, eye tests and help with other NHS costs.
Whether you get help will be dependent on the following:
- your age
- your income
- where you live
- if you get certain benefits
- if you’re pregnant
- the severity of your EB
To find out more and to check your eligibility please visit the following websites:
- GOV.UK – Get help with NHS prescriptions and health costs
- NHS – Check if you can get free prescriptions
- Disability Rights UK – Prescription Charges and Health Benefits
If you live in Scotland, Wales or Northern Ireland, NHS prescriptions are free.
The NHS Low Income Scheme may also be able to help you pay for various healthcare related costs including:
- NHS prescription charges
- NHS dental treatment charges
- Travelling costs to receive NHS treatment
Any help you are eligible for will also be available for your partner if you have one. You can apply if you don’t have savings or investments over a certain limit. Please visit the NHS Business Services Authority for more information.
Support for EB carers
If you care for someone with EB, you may be able to claim Carer’s Allowance if you give regular unpaid care in their own home.
The person you care for must be receiving disability-related benefits for their EB and you don’t have to be related to the person you care for. If you or the person you care for need any help in accessing benefits, remember you can always contact our EB Community Support Team.
For more information about Carer’s Allowance please visit GOV.UK or Carers UK.
In Scotland, this is known as the Carer’s Allowance Supplement. For more information please visit mygov.scot.
Housing and home improvement support
If you’re on a low income or have no income, you could be eligible for support with housing and home improvements which could make it easier for you to live with EB. Support you may be eligible for includes:
- Housing benefit – for more information please visit the GOV.UK website.
- VAT relief – You will have to pay VAT on most things you buy but you may be able to claim VAT relief on certain products designed to help you manage your EB symptoms. For more information please see the VAT relief guidance on the GOV.UK website.
- Council tax reduction – for more information please visit this page on the GOV.UK website or check if you can pay less council tax on the Citizens Advice website.
- home improvement grants:
Help with paying your bills
Please visit our separate page on help to pay your bills, with different information and resources on managing household bills, travel costs, debt, and more.
Page published: October 2024
Last review date: February 2025
Next review date: February 2026