Support for carers of EB patients
Financial, emotional and practical support and resources for adults and young people with caring responsibilities for someone living with EB.
This section contains information, resources, and links to trusted organisations that can offer support to anyone who has, or will soon have, caring responsibilities for someone who has EB.
Am I an EB carer?
Caring responsibilities can vary, but typically you will be a carer for someone living with EB if any of the following situations reflect your current situation:
- You are a parent, brother, sister, family member or friend who cares for someone with EB.
- You do things to help someone with EB including any of the following – helping them to wash, dress, or eat, taking them to medical appointments, doing their shopping for them, keeping them company.
- You are not paid to look after the person you care for.
- You spend a lot of time caring for the person – there is no legal definition of this, but it could mean anything from a few hours a day, to 24 hours a day, 7 days a week.
- You may or may not live with the person you’re caring for and you do not have to be related to the person you are caring for to be classified as a carer.
Financial support for EB carers
If you are a carer for someone living with EB you may be entitled to Carer’s Allowance, which is the main welfare benefit available to support people classified as carers.
For more information about Carer’s Allowance, including eligibility and how it works, please visit the GOV.UK website.
If you are not deemed eligible for Carer’s Allowance, you may still be able to claim Carer’s Credit, which is a National Insurance credit. It doesn’t pay you any extra money however it does fill gaps in your National Insurance record which determines what state pension you will be entitled to.
For more information, please visit the Carer’s Credit overview on the GOV.UK website.
Many local authorities offer a carers card – sometimes called a carer’s discount card – to help you prove your identity as an unpaid carer. You can use it as – or alongside – your personal ID to let supermarkets, GPs, pharmacies, or attractions know that you are an unpaid carer.
Some carers cards act solely as an Emergency Carers Card, whilst others may also offer perks, such as money off.
For more information about carers cards and to find your local scheme, please visit the Mobilise website.
Many visitor attractions and leisure facilities across the UK including cinemas, theme parks, aquariums and zoos offer free or discounted entry fees for carers. Some may request evidence that you are a carer which you can provide by showing a carers allowance award letter or carers card. Please visit the Carers Trust website for more information.
CarerSmart is a partner of Carers Trust that offers cash back on shopping, discounts on insurance and holidays, legal advice, and other offers exclusively for carers and people with care needs.
Practical and emotional support for EB carers
The Carer’s Leave Act states that employees are entitled to one week’s unpaid leave per year if providing or arranging care for someone with a long-term care need. For more information, please visit the Carers UK’s guidance on the Carer’s Leave Act.
The Flexible Working Act also gives all employees including carers the legal right to request flexible working. For more information, please visit the GOV.UK overview on flexible working.
Caring for someone with EB can be very rewarding, however it can also be challenging, both mentally and physically. Support is available though through the DEBRA EB Community Support Team who have a wide range of skills, knowledge and experience and can support you with the following:
- Information, practical, financial, and emotional support and guidance
- Accessing disability benefits, direct payment, and other financial help
- Signposting to other funding options and grant-giving organisations
- Housing, accessing adaptations, equipment and social care
- Disability rights and EB
- Access to EB healthcare clinics
- Access to peer support and social opportunities
DEBRA membership also offers benefits for carers, including:
- Access to our exclusive holiday homes, based around the UK in award-winning 5* parks at highly discounted rates.
- Regional and national EB community events, plus virtual events like our popular Member Pitstops.
It is recommended that you register with your GP as a carer to be able to access additional support including reminders to book your flu jab, mental health support and greater flexibility when making appointments.
Mental health support is also available through the NHS:
Other organisations that could help:
- Contact is a UK-based charity that offers information, advice, support, and guidance for families with disabled children and young people.
- Carers Trust is a charity that works for, and supports, all carers in the UK. They provide services for anyone who cares for a family member, or friend, who is ill, frail, disabled or has a mental health condition.
- Carers UK is a charity that provides information and guidance to unpaid carers on a variety of topics including benefits and financial support, carers rights in the workplace, carers’ assessments and how to get support, services available to carers and the people they care for, and information on how to complain effectively and challenge decisions.
- Home-Start is a local community network of trained volunteers and expert support helping families with young children through their challenging times.
Support for carers caring of people with life-limiting conditions
Hospices
As well as supporting patients with life-limiting conditions, hospices can also provide support to carers and relatives with services varying depending on the hospice.
Children’s hospices can offer breaks that allow the whole family to be together and supported in the care of their child. They can also offer respite care solely for the child or young person which enables parents, families, and carers to take a break so that they can recharge their batteries or perhaps spend time with other children.
A children’s hospice is often a bright, colourful environment with lots of fun activities for children which makes a respite stay feel like a holiday, meals are usually prepared, and support is readily available to allow families/carers to concentrate on creating happy memories. The types of support often offered to relatives and carers includes support groups, therapies and counselling, accommodation during respite stays, invitation to family days/activities, and assistance with memory making activities.
Hospices also provide bereavement support after someone has died including cold rooms in which the deceased can lay to rest and families can visit in comfortable surroundings. Hospice support teams can also assist with preparing a funeral and provide ongoing bereavement support for up to a year after the person has died.
Other organisations offering support with life-limiting and life-threatening conditions
Together For Short Lives is a charity that works to ensure children with life-limiting and life-threatening conditions and their families can make the most of every moment they have together.
The charity Rainbows cares for hundreds of families every year who have a baby, child or young person with a serious or terminal illness that means that their lives will be shorter than most.
Support for young carers
A young carer is typically someone aged 18 or under who helps to care for a family member, relative or friend. A carer aged 16-25 is known as a young adult carer.
To be classed as a young carer or young adult carer you may look after your parents or care for a brother, sister, or another family member. You may have to do extra jobs around the home, such as cooking, cleaning, and helping the person you care for to move around or get dressed. You may also provide emotional support.
The DEBRA EB Community Support Team can help connect you with other young people who have EB or care for others with EB through platforms such as EB Connect, and through in-person and online EB community events.
As a young carer you are entitled to a young carer’s assessment which assesses your own needs and can help you find ways of coping and make plans for your education and hobbies alongside any caring responsibilities you have.
For more information about a young carer’s assessment, please visit the NHS website.
- Carers UK – Support for young carers.
- Sidekick – Helpline for young carers.
- Young Minds – Mental health support for young people.
- Mind – Mental health support for young people.
- Barnardo’s – Supporting children and families who need it most.
- The Mix – Essential support for under 25s.
- Sibs – Support for brothers and sisters of disabled children or adults.
- Go Beyond – Respite breaks for young people.
- The Children’s Society – Support for young people facing the toughest challenges.
- Youth Access – Nationwide advice and counselling network for young people.
Page published: October 2024
Last review date: July 2025
Next review date: July 2026