Ison Harrison interviewed Debbie Robinson, Deputy Chair of the Erb’s Palsy Group (EPG) for Erb’s Palsy Awareness Week which runs from 16th October 2023.
This year marks the Erb’s Palsy Group’s 30th anniversary. The Group has come a long way since it was first established in 1991. The EPG is now a registered charity with 11 Trustees and 2,062 registered members, plus their families.
The Trustees are all unpaid volunteers and the activities they run are funded entirely by donations, grants and the fund-raising efforts of its members and supporters. Here’s what Debbie had to say:
For anyone who hasn’t heard of the Erb’s Palsy Group before, please could you tell us how you support families and individuals and what geographical area the group covers.
We are a UK charity and as such support individuals and families across the UK (England, Northern Ireland, Scotland and Wales) although we actually provide support worldwide to members via our social media channels – on Facebook we know of families in Australia, Belgium, Holland, Norway, India, Spain … the list goes on.
Our support takes many different shapes … we offer support via social media (X formerly Twitter, Instagram, Website and Facebook) and have a very active private Facebook group for members to ask questions and share their experiences. We have a quarterly newsletter, a telephone helpline, run regular fun day events and an annual study day for professionals. We also have a host of publications to assist in all aspects of Erb’s Palsy for various age ranges.
How does the EPG work with medical professionals?
Each year we run a study day for professionals to educate on Best Practices for the treatment of Erb’s Palsy. Whilst this is usually for midwives, we have undertaken training for Physiotherapists and Occupational Therapists too.
We have close relationships with hospital teams working as Erb’s Palsy Specialists and are always willing to provide our information/publications to local therapists and GP’s etc. and can put local teams in touch with those specialist teams.
How can people contact the EPG for support?
Our website has all the contact details for current Trustees https://www.erbspalsygroup.org.uk/
Telephone Helpline: 024 7641 3293
The EPG have a large range of publication for parents, children, teenagers and young adults covering topics such as care of newborns, treatment, education, and activities of daily living. How can people access this information?
We ask that individuals/families join the charity as a registered member to gain access to these documents – this is free of charge and can be done via the ‘Join Us’ tab on our website. We will then be able to post a hard copy or email a pdf copy of the requested documents.
Professionals can request copies from the works email account by contacting one of the Trustees – email addresses available again via our website.
Can you share some of the EPG’s proudest achievements from the last 30 years?
There are many – where do I start?
For me personally, I have to say the Herbie Books and associated materials are my proudest achievements. As a child, I always wanted to write a book and now I have done that! More importantly though, as the author it has been fantastic listening to group members say how helpful the books have been to their youngsters and see how wonderfully they engage with the character I created.
Likewise, the hours spent organising the fun days and charity balls are stressful but, seeing everyone enjoy themselves and again, the youngsters, feel at home at our events, is amazing and I will always be grateful for the opportunities the group have afford me in being able to achieve that.
From a group point of view, we also have the Study Days … knowing we are making progress in preventing this injury is humbling. We were also involved in the implementation of the care pathway – a vital process in the treatment of Erb’s Palsy.
Attendance and speaking at the Narakas Symposium – no other support group have ever been invited to speak at this event so to have Karen do so was a major achievement.
Everything about our group makes me and the Trustees proud – we are a group of mums, dads, individuals with Erb’s with little to no funding and with no experience of running a national charity yet here we are leading the world in Erb’s support groups – how good is that?!
What are the EPG’s plans for the future, what does the charity hope to achieve?
We always have plans in the pipeline … and divulging those would be difficult. We do like to ensure we can deliver on our promises and ideas before announcing them publicly!
We strive to continue educating professionals and supporting our members and will do that in any way possible and open to us.
