We did a Q&A with Karen back in 2017 and we thought the Erb’s Palsy Awareness Week 2019 would be a good time to catch up with Karen again to see what the charity has been doing over the past two years.
Karen has been involved in the Erb’s Palsy Group since 1993 when it was a very new group with only 12 families registered as members. Karen Joined after her son Gavin was born and suffered a severe brachial plexus injury during his birth and she hasn’t looked back ever since.
The charity has come a long way since Karen joined and we are sure it will continue to thrive because of the effort and dedication of Karen and the other board members.
Hi Karen – for those who haven’t heard of the Erb’s Palsy Group before, please can you tell us a bit about how you support families and individuals and what geographical area the group covers.
Hello, our organisation is a national one, we have members registered throughout the whole of the UK and also all over the globe, as far afield as Australia and the USA. We offer a range of information leaflets and booklets supporting families from newborn babies through to adulthood. We also have a very active Facebook Group with over 2000 members, with members posting questions and advice every day. We also send out our Newsletter the Erb’s Blerb on a quarterly basis to both families and professionals who are connected to Erb’s Palsy.
How can people contact the EPG for support and information?
Please tell us about the Erb’s Palsy awareness week and why it is important
Erb’s Palsy is a little know condition, yet it is as common as Downs Syndrome affecting one in every 1800 live births. Our Charity has always had educating the wider public about Erb’s Palsy at the heart of our values and it is vital to us that we get people talking about Erb’s Palsy so that it becomes as well known and understood as Cerebral Palsy. Our Awareness week gives our members a focus to spread the word about the disability and to ensure as many people as possible hear about the condition and the work our Organisation carries out.
If you could offer one piece of advice to parents of a child who has Erb’s Palsy what would it be?
Educate yourself, learn as much as you can about the condition from reputable sources (our website has information fully verified by medical professionals) and be proactive in ensuring your child has the best of care available as this will help to ensure a good outcome for your child.
The EPG have been very busy since our last Q&A, can you share with us some of the EPG’s proudest achievements from the last year?
We have been busy! We held an Anniversary Ball to celebrate our 25 years of supporting families and professionals, we facilitated the production of a wonderful Video outlining the results of our EQUALS study, which looked at the actual costs of living with an Erb’s Palsy. Three of our Trustees were invited to attend an International Symposium held in the Netherlands for the top surgeons in the field of Brachial Plexus Injuries and we held a very successful Study Day for Therapists which taught them Best Practice Techniques for treating patients with Erb’s Palsy.
In addition to this we have continued with our usual work of producing new information booklets; this year we have produced one for people who have Erb’s Palsy who are due to or have recently become parents – this informative booklet is full of helpful suggestions and advice as ever supplied by our wonderful members and produced by Debbie Robinson.
We believe that our organisation is the only one worldwide supporting people with Erbs Palsy to have as many information booklets as we have.
What are the EPG’s plans for the future, what does the charity hope to achieve?
As ever we look to our members to advise us how we can best support them and meet their needs – a recurring theme for the past few years has been the issue of pain amongst some members and we are hoping to collaborate with some of the leading hospitals to carry out an in-depth survey on pain and pain management in order to offer useful advice and signposting to members to help them with their issues. Next year will also see a revamp of our website to include some new features, and of course the continuation of our work supporting families affected by the condition.