Support for EB patients and carers through hospice care
An overview of hospice care and the respite they can offer to families with EB, as well as carer who may need a respite break.
There are hospices that offer care for both children and adults, which may be able to provide respite stays to those in the EB community. Respite care is designed to not only help those living with conditions like severe EB, but also to give breaks to carers.
Please do speak to your EB Community Support Manager if you need support accessing the services mentioned below, or EB specific information to provide to other agencies.
If you don’t have a EB Community Support Manager and want to contact our team, we’re only a call away Monday-Friday 9am-5pm on 01344 771961 (option 1). Outside of these hours you can always emails us at communitysupport@debra.org.uk or leave us a message and we will get back to you as soon as possible.
Respite care for children
Children’s hospices can offer respite stays for whole families. These hospices often provide a bright, colourful environment with lots of fun activities for children, to make a respite stay feel like a holiday. During your stay you can access many of the services on offer, your meals are usually prepared for you, and support is just around the corner when you need it. This really does allow families to concentrate on creating happy memories.
The types of support usually offered to relatives and young carers include support groups, therapies and counselling, accommodation during respite stays, invitations to family days/activities, and assistance with memory making activities.
Your local hospice will have a have a wide range of trained staff and volunteers to look after your physical symptoms, as well as your emotional needs and any practical issues you might need help with. Hospices also provide support to the carers and relatives of the patient. Services will vary from each hospice though, so please visit the Hospice UK website to find more information about what services you could expect and who provides hospice care.
The Hospice UK hospice finder is a good way to locate children’s hospices in your area.
You can also visit the Government website to find out if you are eligible to receive hospice care and what’s available in your local area.
You can find more information about respite available in Scotland here.
Respite care for adults
Hospices also offer respite care designed for parents and carers. If you’re caring for someone living with EB, you can ask your social services to carry out a free needs assessment to see what extra support you may need. You can find your local council on the Government website and contact them to ask for this assessment.
If you are eligible, they will be able to signpost you to the appropriate respite service in your area. Please go to the NHS website to find out more.
The Hospice UK website offers more information about what services you could expect, who provides hospice care, and where you can find hospice care near you.
You can use the Hospice UK hospice finder to locate the adult hospices that are closest to you.
Other useful resources
Clinical Practice Guidelines
You can find a range of Clinical Practice Guidelines (CPGs) on our website to help professionals understand how to treat people with EB. These guidelines offer evidence based, best care guidelines, which are designed to help not just people living with EB and their families/ carers, but also healthcare providers.
These CPGs also include guidelines for palliative and end of life care for people living with EB, which may help staff if you or a loved one are receiving this kind of care at a hospice.
Together for Short Lives
Together for Short Lives also have resources and a helpline to support parents, carers and professionals who want practical or emotional support when caring for someone under 25 with a life-limiting condition.
Scope
Scope, the disability equality charity in England and Wales, provide more information on respite care and the rights you’ll have as a carer of someone living with EB.
Page published: October 2024
Last review date: July 2025
Next review date: July 2026