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EB Community Support Team
Our EB community support team works with the EB community and healthcare professionals to provide support services for families and individuals affected by EB.
We aim to improve quality of life for people living with all types of EB. We also provide information, guidance and advocacy for the wider EB community including families and carers.
By joining DEBRA UK as member, which is completely free, you’ll get full access to the range of EB community support services we offer.
Become a DEBRA UK member
How to get help from the EB Community Support Team
We have Community Support Area Managers covering each region of the UK, we are also a national team and support each other to combine expertise and manage workload effectively to ensure you get the support you need.
The team is here to support you Monday-Friday 9am-5pm, on the phone, virtually and in-person. Please email communitysupport@debra.org.uk or ring 01344 577689 or 01344 771961 (select option 1).
The EB Community Support Team Leaders check the community support inbox regularly for messages and will allocate each referral / request received to one of the appropriate Community Support Managers available.
Outside of these hours you can and leave a message and a member of the team will get back to you as soon as possible (which is normally the next working day).
Meet the DEBRA EB Community support team
Shamaila’s area of special expertise is support grants, personal budgets and direct payments, carers’ assessments, and mental health first aid.
Biography
“My journey at DEBRA UK began in November 2019 as a Community Support Area Manager, I was then appointed as the Deputy Team Leader and in September 2022, I was promoted to Community Support National Manager.
My role involves, working closely with the Director of Member Services to assist in further development of the national EB community support service and to support the Community Support Team to deliver a high standard of services for people whose lives are directly affected by EB.
I am responsible for developing framework and processes to support the team to actively engage with members associated to their own geographical areas. I also work very closely with the specialist EB healthcare teams in Birmingham, London and Scotland.
I am the safeguarding lead for the member services directorate and a mental health first aider for the organisation.
I have previously worked for various councils and charities developing and managing services for people with disabilities and integrating them into mainstream services.
When I am not working, I enjoy travelling, I like to keep fit and enjoy going to the gym and for a run. I also have two young children that keep me mentally and physically active!”
How to contact Shamaila:
Phone: 07747 474454 or 01344 577689 / 01344 771961 (option 1)
Email: shamaila.zaidi@debra.org.uk
Biography
“Throughout my career I have worked primarily in children’s homes and was an Ofsted registered manager for many years caring for and supporting children and young adults who needed to live away from their families. I have always maintained a personal and professional agenda to drive up standards of care. I have worked in and managed diverse teams with equality and inclusion at the core of my practice and am used to being part of multi-disciplinary teams working to attain the best possible outcomes.
I have managed residential homes for young adults with mental health issues and behavioural difficulties and I have also supported people with complex health needs, multiple diagnosis, and people with disability and mobility issues. I have empowered people to access and sustain education and employment and promote their independence and personal development to become comfortable with greater social inclusion. I have a keen interest in staff mentoring, training and development.
I have worked for DEBRA UK since 2022 and in my role, I strive to raise awareness of EB and wherever and whenever possible improve quality of life for our members. I am developing my specialist area within the Community Support Team with a focus on discrimination in the workplace to be able help members gain and maintain appropriate employment and make a meaningful contribution to society. I am also the liaison with the specialist EB healthcare teams at Great Ormond Street Hospital and Guys and St.Thomas’ Hospital.
When I am not working, I have grandchildren to love and support. I am interested in rugby, sci-fi, and l am actively involved in local politics”.
How to contact David:
Phone: 07442 546912 or 01344 577689 / 01344 771961 (option 1)
Email: david.williams@debra.org.uk
Biography
“I joined DEBRA UK in April 2023. I have a varied and extensive background in health and social care. Before joining DEBRA UK, I worked in the clinical research sector, specialising in delivery of clinical trials within the home. Prior to this, I managed a home care agency – supporting individuals within the community. I have also worked for several NHS trusts and studied social and community development at university.
I am passionate about making a difference and I’m excited to put this into practise at DEBRA UK.
As well as being a Community Support Team Leader at DEBRA UK I am also the liaison with the EB healthcare teams at Birmingham Women and Children’s Hospital and Solihull Hospital.
When I am not working, I have an 8-year-old son and a Labradoodle, who love to keep me busy! When we’re not out on long walks or playing/watching football, I can often be found daydreaming about my next holiday!”
How to contact Rachel:
Phone: 07442 559445 or 01344 577689 / 01344 771961 (option 1)
Email: rachael.meeks@debra.org.uk
Amelia’s area of special expertise is bereavement support.
Biography
“I have worked at DEBRA UK since 2019, my background includes childcare and varied family support roles in both charity and local authority settings.
I have utilised my skills in bereavement work to help write the bereavement resources on our website. I enjoy my role here at DEBRA UK, working with members and sharing the specialisms we have across the team to ensure our members are supported to the best of our abilities. I am very passionate about raising awareness of EB.
What I learn each day is the strength that our members have – how they overcome the challenges they face in daily life. I find it a complete privilege to be allowed to witness this.
When I am not working, I enjoy spending time with friends and family, visiting theatres and music events, and winding down in my garden”.
How to contact Amelia:
Phone: 07920 231271 or 01344 771961 (option 1)
Email: amelia.goddard@debra.org.uk
Holly’s area of special expertise is education and emotional support.
Biography
“I joined DEBRA UK in June 2022, prior to this I worked with children in a variety of roles, within the NHS, charity and private sector. Most recently I have worked as a nanny but missed working supportively with families which this role offers.
My background knowledge gives me a good understanding of supporting children and families within education, and I am also passionate about giving people the space and listening ear they need to offload when life gets hard. I have undertaken several listening skills courses and put these into practice through my previous job roles and look forward to being able to use these skills again.
I had an awareness about EB prior to this role due to a family member having EB, but my knowledge about EB has continued to grow in my time with DEBRA UK. I look forward to continuing my learning journey and supporting the people that I work with to the best of my ability.
When I am not working, I like to get out and walk my dog, get to the gym or watch a new TV series!”
How to contact Holly:
Phone: 07884 742439 or 01344 771961 (option 1)
Email: holly.roberts@debra.org.uk
Rowena’s area of special expertise is housing.
Biography
“I started working for DEBRA UK in June 2018, prior to this I had a 25-year career in social care where I worked in a variety of different sectors including working with children, adults, people experiencing homelessness, housing, domestic violence, vulnerable women and families.
My experiences and knowledge enable me to assist our members in many ways, including how to access the correct help within the housing sector.
I have had the pleasure of supporting our members and healthcare teams during my role with DEBRA UK and I am very passionate about the quality of service we provide.
When I am not working, I am a very sociable person and love spending time with my family and friends, I enjoy keeping fit and going to the gym, running and walking. I am known for taking on new challenges and in 2018 I trekked 150km across the Sahara Desert in aid of DEBRA UK.”
How to contact Rowena:
Phone: 07747 474051 or 01344 771961 (option 1)
Email: rowena.hamilton@debra.org.uk
Susan’s area of expertise is housing and benefits.
Biography
“I began working with DEBRA UK in July 2022. I had previously spent 17 years working in social care, specifically with 16–25-year-olds moving from local authority care to independence. I was a specialist housing advisor for this age group so have vast experience of housing legislation, complex needs, mental health support, homelessness, tenancy support, and helping people access benefits for the first time.
In my role I aim to support our members with housing support and access to benefits and ever since joining DEBRA UK I have loved meeting members, and colleagues from the EB healthcare teams.
When I am not working, I like to listen to live music, this is a passion of mine so you will find me rocking out at a concert or festival whenever I get the chance. I attend fitness classes mainly so I can keep mobile, and it supports my wellbeing. My children are grown up now, but we spend a lot of time together and that brings me a lot of joy. I also enjoy the beach or being near water even if it’s just for a walk”.
How to contact Susan:
Phone: 07570 313477 or 01344 771961 (option 1)
Email: susan.muller@debra.org.uk
Biography
“I started at DEBRA UK in July 2021 within the Fundraising and Events team as a Supporter Services Officer, where I supported the running of golf days and major events. I have now made an exciting move to the Community Support Team as a Community Support Area Manager. My background includes a degree in psychology and my employment history saw me work in elderly residential and dementia care homes as a care assistant and activities coordinator. I enjoy people centered roles and I am passionate about supporting the EB community and raising awareness of the condition.
I strive to use my skills to empower and support our members with any challenges they may face, as well as being a listening ear if needed. I look forward to developing positive relationships with the EB community and providing an excellent community support service.
When I am not working, I am a big animal lover and enjoy spending time walking my dogs, riding and caring for my two horses, and looking after a menagerie of exotic pets! I have quite the sweet tooth and love to make baked goods for friends and family”.
How to contact Jade:
Phone: 07919 000330 or 01344 771961 (option 1)
Email: jade.adams@debra.org.uk
Biography
“I joined DEBRA UK in April 2024. I come from a background of working with adults with disabilities for 10 years, firstly as a support worker and then with a specialist social work team. I aim to bring my experience of working with clients with a wide variety of support needs and understanding of the social and health care systems to DEBRA UK members in Scotland.
I’m passionate about providing both practical and emotional support, as well as working in partnership with other professionals to meet our members needs in any way we can.
When I am not working, I have just bought my first fixer upper home so am spending a lot of time DIYing and planning the next project in the journey. I also have a 6-year-old greyhound I adopted a year ago who keeps me busy with his antics – I especially love taking him for walks in scenic spots with friends and family at the weekend”.
How to contact Erin:
Phone: 07586 716976 or 01344 771961 (option 1)
Email: erin.reilly@debra.org.uk
Biography
“I started at DEBRA in July 2024. I had previously spent around 18 years (most of my working career) in education for children. However, my most recent position before joining DEBRA, was working for a service who support children and families with SEND.
I aim to bring my knowledge on SEND and my experience and passion to our members. I want to support families through their own personal journeys and advocate for you and your support needs.
When I am not working, I like to spend time with my 2 children, book and go on sunny vacations and watch documentaries.”
How to contact Gemma:
Phone: 07825 072211 or 01344 771961 (option 1)
Email: gemma.turner@debra.org.uk