Knowing what support is available can sometime be a challenge, so we thought it would be useful to highlight a few sources of support that you may find helpful.
Carers Trust works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend.
Carers UK provides advice, support and resources to anyone caring for someone, and campaigns to make life better for carers across England, Scotland, Northern Ireland and Wales.
Action for Children offers support for young carers, disabled children and young people and siblings.
If you live with EB, ask your EB nursing team for advice and tips on comfortable clothing and minimising friction and pressure in footwear. The products below have been reviewed in DEBRA's magazine, In Touch, by people living with EB. DEBRA does not endorse any products or services mentioned. Remember, everyone's skin is different and DEBRA cannot be held responsible for any consequences arising from the use of these items.
Found a product helpful? Let us know.
Ginger Shampoo and Banana Conditioner from the Bodyshop
Bras from Genie
Underwear from Theya Healthcare
Safety shoes from V12 footwear
Safety boots from Dewalt
Shoes from Skerchers Go Walk
The Merlin Magic Pass scheme, which offers entry into Merlin theme parks and attractions around the UK, provides free a transferable carers' pass to disabled Merlin Passholders. To find out more and see if you are eligible visit www.merlinannualpass.co.uk/disabled-passholders.aspx.
If you love going to the cinema you can get a card which enables you to take your carer for free. Find out more at www.ceacard.co.uk.
Disabled Person's rail card – reduction to your rail fare for the holder and one companion. Find full details at www.disabledpersons-railcard.co.uk.
Your local authority can provide funding towards adaptations to enable you to live independently at home, or can help you arrange care in your home. Funding, eligibility criteria and the type of assessment needed vary by area. Visit your local authority website or contact them directly for further information about services or funds offered in your area. To find your local authority go to www.gov.uk/find-your-local-council.
Disability Grants is a searchable directory of grant providers, which can point you to a wide range of grants with different purposes and eligibility criteria – for children or adults, from iPads to equipment.
The government backed Family Fund provides a wide range of grants to low-income families raising disabled and seriously ill children and young people. This includes essentials such as cookers, washing machines and fridges, and other items such as computers and holidays.
The Caudwell Trust provides family support, grants for equipment, short break activities, specialist sports equipment and supported holidays for the entire family including carers.
Turn2us helps people in financial need gain access to welfare benefits, charitable grants and other financial help.
Make-A-Wish Foundation grants magical wishes to children and young people fighting a life threatening condition.
The Willow Foundation supports seriously ill young adults aged 16 to 40 to fulfil uplifting and unforgettable special days.
Hospice UK: A useful list of adult hospices throughout the UK
Together for Short Lives: Offers support & advice for families with seriously ill children in the UK
Palliative Care Scotland: Full list of palliative care services in Scotland
Children's Hospice Association Scotland: CHAS provides hospice services in Scotland for children and young people who have life-shortening conditions
The Scott Ward Schofield Memorial Fund is now the proud owner of Scott’s Caravan – a beautiful three bedroom, six berth caravan near Blackpool. SWSMF provide holidays, short breaks and days out for people with EB, specifically those with Junctional and Dystrophic types. The caravan is also open to bereaved EB families. To apply for a holiday or short break just email firstname.lastname@example.org with the full names for all your party and your preferred holiday dates.
Hidden Depths Canal Cruises are generously offering DEBRA members living with EB and their families and carers boat trips from Kings Cross. Please call Hazel Ewens (Membership Manager) on 01344 771961 for more information.
Toy Like Me has scoured the internet for toys, bespoke and off-the-shelve, which represent 'diffability' and has a vigorous social media campaign, #ToyLikeMe, to make toys more representative for people with disabilities.
When it is not available on the NHS, Whizz Kidz can help with a broad range of mobility equipment. Whizz Kids also provides other services for young people and support for parents.
Children Today raises funds to provide specialised equipment and services for children and young people with disabilities throughout the UK.
The Newlife Foundation for Disabled Children provides an equipment service and grants. Newlife also runs a free, nurse-led confidential helpline which supports families.
REMAP custom-makes equipment to help disabled people live more independent lives.
Hatch was set up by disability manufacturers Leckey and Firefly up so that parents of children with additional needs could put forward ideas for products which could make a real difference to their child's life. If an idea gets enough support it is made.
Cerebra has prepared helpful guides for parents of children with special educational needs and disabilities including Education in England: Statements of Special Educational Needs: A Guide for Parents, Education in Wales: A Guide for Parents and A Problem-Solving Toolkit for Families.
Special Needs Jungle creates easy to understand resources, articles and information for parents and carers of children with special needs, disabilities and health conditions to better enable them to navigate the special needs system.
Sky Badger is a charity that finds help and adventure for disabled children and their families in the UK.
Contact your local council for information on services in the local area for parents, children and young people from 0 to 25 years old, who have special educational needs and/or disabilities (SEND).
The Motability Scheme provides a simple way to lease a new car, scooter or powered wheelchair. Visit the website to check eligibility. They can also help towards the cost of driving lessons for disabled people. Please contact Motability directly on 0300 4564566 for more information on learning to drive on the scheme.
Southern trains operate a priority seating card which is available upon application. Anyone who qualifies for a card can use it on any Southern service to secure a priority seat and avoid the embarrassment of asking someone to give up their seat.
Warm Home Discount – participating energy suppliers help low-income and vulnerable households meet their energy costs.
Winter Fuel Payment – annual payment of up to £300 for pensioner households.
Cold Weather Payment – during periods of severely cold weather to pensioners who receive pension credit or people on income-related benefits who meet certain criteria.
Find out more on the Citizens Advice website or contact your energy supplier.
Annual payment towards your electricity bill – if you contact your energy provider, there is a scheme which will put credit of about £130.00 on your electricity bill in the winter as long as you are in receipt of a disability related benefit. You will need to register with your energy provider for and remember to re-register if you switch provider.
Every company offers the ‘WaterSure’ tariff. This caps the bills for certain metered household customers at the average household bill for their area. It applies to metered customers who receive specified benefits and:
If you think you may be eligible, contact your water supplier for more information on how to apply.
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