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How DEBRA UK works with other services to support EB families 

Two women sit at a table with brochures and a pamphlet stand, engaged in a discussion. Two women sit at a table in conversation. One is holding papers, and the other wears a blue uniform with a name badge. Various materials and a phone are on the table.
EB Community Support Team member with an EB nurse

The DEBRA UK Community Support Team works closely with the following services to raise awareness of EB and to ensure that people with all types of EB get the best possible support throughout their journey with EB. 

Find out more below. 

The DEBRA UK Community Support Team works closely with nurseries, pre-schools, primary schools, secondary schools, and higher education institutions to raise awareness of EB and ensure that an education, health and care (EHC) plan is in place for all DEBRA UK members in education. Having an EHC helps ensure that any child or young adult with EB gets the support they need within an educational setting. 

Additionally, the team also encourages staff from educational establishments attended by DEBRA UK members to join EB study days organised by the specialist EB healthcare teams. The objective of these days is to increase understanding of EB and of the arrangements and reasonable allowances that may be required to ensure people with EB get the specific support they need to be able to thrive within education.  

For more information about how DEBRA UK can support you on your journey through education with EB, please visit: Epidermolysis bullosa education support

 

The DEBRA UK Community Support Team offers a range of financial, emotional, and practical support for EB carers including making EB carers aware of benefits they may be entitled to, signposting them to other funding options and grant-giving organisations, and connecting them with other members of the EB community including other EB carers through face-to-face and virtual community events. The team is also on hand to offer emotional support.  

For more information about how DEBRA UK can support EB carers, please visit: Families & carers

 

EB specialist healthcare 

The DEBRA UK Community Support Team attends EB outpatient clinics held at the four designated EB healthcare centres of excellence, the Scottish EB service, and other hospitals and outreach clinics to meet with EB families and offer our support services. The team is also in regular contact with the EB nurses and invite the multiagency healthcare teams, which include the nurses plus dieticians, podiatrists, and consultant dermatologists, to deliver workshops and information stands at DEBRA UK events attended by our members. 

Our objective is to ensure that anyone with any form of EB can access the specialist healthcare and resources they need. 

For more information about EB healthcare, please visit: Managing medical care.   

 

Non-EB specialist healthcare 

As well as working closely with EB specialist healthcare professionals, the DEBRA UK Community Support Team also engages with non-EB specialist healthcare professionals including GPs, doctors, nurses, pharmacists and other community-based healthcare professionals to ensure they have sufficient knowledge about the condition, the needs of people living with all types of EB, and how the condition needs to be managed. 

If you’re not already under the care of one of the specialist EB healthcare teams, a DEBRA UK Community Support Manager can provide a letter for your GP to support them in making a referral to one of the EB healthcare centres of excellence or the Scottish EB service. Please contact the DEBRA UK Community Support Team today. 

 

The DEBRA UK Community Support Team can connect you with specialist healthcare providers who can consolidate and manage prescriptions and ensure a regular supply, via mail order, of essential items including dressings and pain relief. 

For more information about the EB healthcare delivery service offered by Bullens Healthcare, please visit: Debra – Bullen Healthcare (bullens.com) 

 

The DEBRA UK Community Support Team can help you secure suitable housing. This can include liaising with healthcare professionals to provide supporting letters that raise awareness of EB / your needs, submitting evidence regarding your EB, and assisting you with the completion of medical forms as part of a housing application. 

The team can also help you to access home adaptations. 

For more information and support regarding housing, please visit: Housing help  

 

The DEBRA UK Community Support Team can liaise with social workers on your behalf to request an assessment of your needs, and to determine whether you are entitled to funding to help access carers or other support that could help you to live more independently. 

For more information about social care and how the DEBRA UK Community Support Team can help, please visit (LINK TO ‘SOCIAL CARE AND CONTINUING HEALTHCARE SUPPORT’). 

 

The DEBRA UK Community Support Team can help raise awareness and understanding of EB with your employer and colleagues by providing a template letter which provides an overview of EB and the impact it has on you. This can help ensure your employer makes necessary and reasonable adjustments and allowances that will enable you to thrive in the workplace. 

To request a letter please contact the DEBRA UK Community Support Team, and for information about other employment support available, please visit: Work & employment

 

The DEBRA UK Community Support Team can share their expertise in benefits and EB to support you to access any benefits you may be entitled to, including disability benefits. They can also signpost you to other funding options and grant-giving organisations. 

The team can support benefit applications by providing a supporting letter, which explains more about EB and your specific needs, and they can liaise with representatives of the Department of Work & Pensions (DWP) during assessments. 

To request a letter please contact the DEBRA UK Community Support Team, and for more information about finance and benefits support, please visit: Money matters.