As part of Erb’s Palsy Awareness Week, today we are interviewing Amy Swift, a trustee of the Erb’s Palsy Group.
Q: Hi Amy, please tell us about your background and how you got involved with the EPG, what does the charity mean to you?
I am a children’s mental health nurse and a Lecturer at Northumbria University. I am a mum of two and my oldest child has a brachial plexus injury. I became involved with the EPG when my first child was born with a very severe brachial plexus injury. A consultant in the hospital told us about the group and I joined. I became a trustee of the charity a few years ago and have relished the opportunity to support families, individuals and health professionals and to help them navigate what can be a very tricky pathway.
The charity, to me, are a breath of fresh air. They enable parents and support them at the most difficult times. They enable individuals to live life to the fullest and the publications they have made for those living with the injury are great evidence to support that. They campaign tirelessly for understanding and awareness of the condition in the hope that babies will be born safely without an injury and that those who do have the injury can access adequate therapy and treatment.
Q: Please tell us about the Erb’s Palsy awareness week and why it is important.
Erb’s Palsy week is a week we dedicate as a charity each year to raise awareness about our charity and what we can do to help others. Not only that but to raise awareness of the condition itself and what the prognosis actually looks like. It is important as through this outreach members find our charity who have previously had no support, we ensure these individuals can access the correct treatment pathway, it enables individuals to tell their story and educate others on what life is like with Erb’s Palsy. It can also raise some much-needed funds so we can continue to support those affected by the injury.
Q: What do you wish the general public knew about Erb’s Palsy?
Erb’s Palsy is so much more than a ‘broken arm.’ What these individuals have to overcome and live with on a daily basis is tantamount. It affects every aspect of their lives from social to functional, enduring long hours of therapy and operations. Just because someone may look okay does not mean that they are.
Q: If you could offer one piece of advice to parents of a child who has Erb’s Palsy what would it be?
I would say ‘see the child, not the injury.’ As a parent you can get caught up in worry, countless appointments, operations etc and sometimes miss the beautiful human being who is staring up at you. Once you begin to realise their arm does not define them as an individual can begin to appreciate the wonderful gift you have right before you.
Also, apply for DLA. Those long journeys to see specialists can become quite costly. We also use ours for 1-1 swimming lessons which is great physio!
Q: If you could offer one piece of advice to a child or young person who has Erb’s Palsy what would it b
Don’t let it hold you back!