As part of our support of Erb’s Palsy Awareness Week, we have interviewed Debbie Robinson, Deputy Chair from the Erb’s Palsy Group to find out more about her role at this charity that helps to support families affected by Erb’s Palsy.
1. Please tell us about your background and how you got involved with the EPG.
I am Debbie Robinson, married to Dave who is an off-shore engineer and Mum to Caitlin aged 19 with left Erb’s and Aidan who is 16. Prior to having Caitlin, I worked as a Care Manager Assistant and Occupational Therapy Assistant for Durham Social Services, moving to an Enabler Project working with service users with physical disabilities and sensory impairment following the birth of Aidan.
I initially became involved with the EPG following Caitlin’s birth – as is the case for many other parents, I had not heard of Erb’s Palsy until the day she was born. At this stage, I concentrated on Caitlin’s care needs (she had 3 surgeries under the age of 4) and the safe arrival of her younger brother but closely followed the work of the EPG.
When Aidan was 2 years old, due to the increasing physiotherapy needs of Caitlin, the need to work flexible hours, a husband who was off-shore and school and nursery constraints, the decision was made to leave paid employment and concentrate on the family at home. Karen didn’t take long to strike, inviting me to attend a Study Day, write a couple of articles for the Blerb and before Aidan started school several years later I found myself on the Board of Trustees!
My role originally started as Publicity Officer, I was even Treasurer for a brief period of time but a Fun Day in Darlington (only 20 minutes from home) saw me become Events Co-ordinator in 2008 and I then took on the role of Deputy Chair when our organisation become a CIO.
2. How does the Erb’s Palsy Group support families and individuals?
Our telephone helpline has always been a main feature of our support to families, individuals and professionals although, over the last few years, email and especially Facebook have increased in popularity. We can spend many an evening ‘chatting’ on private messenger to a Group member providing support and advice. Although Karen is our Chair and holds responsibility for the helpline, all Trustees have their contact details on our website and can be contacted directly.
Where feasible, we will offer face to face support, not just through our annual events. It is not unusual for myself and local colleague Amy Swift to meet any new members in the North East for coffee and cake!
Over the last few years we have also developed outreach events – smaller, less formal gatherings to our annual Fun Day – in the North East Amy and I have collaborated on a bowling and burger evening and a couple of soft play dates with a room for parents to chat over a cuppa. Similar activities have taken place in other locations around the UK including Sabrina Sorrie’s annual Northern Ireland Meet Up which is always well attended.
It has also been known for Trustees to assist members on hospital visits if feasible. If there is a need and we can comply, we will.
In addition to the personal support provided we have a number of publications to support professionals and families – parents and children alike. Our ‘Information Booklet’ is our main resource but our ‘Teen Booklet’, and ‘All About Me Booklet’ have proved invaluable, as have our ‘Herbie’ books.
3. Please tell us about the importance of Erb’s Palsy Awareness Week and the plans for Erb’s Palsy Awareness Week 2018.
This is hugely important to the EPG. We are extremely proud of the progress made by the Group over the years in promoting the Group and the condition but know we still have work to be done. There are still new Group members on a weekly basis and whilst it is encouraging they have reached out to us and can receive support from us and other families (we never underestimate the support our families give each other), we know this means there is still more to do in reaching people at the appropriate time – some members find us in adulthood – why have they not come across our Group earlier? Some members have found us via a Google search – why are hospitals not providing that information on discharge?
For many, Awareness Week is an opportunity to raise a few funds for the Group and whilst that is certainly not a necessity, every little helps! By holding a coffee morning or sponsored event, they raise funds and make people aware of the Group and the condition.
Plans are already underfoot for this year … sadly we cannot use a Thunderclap as we have done in previous years as Facebook have prevented them from using them as a platform and the organisation has now folded. However, still expect to see Facebook and Twitter adorned with EPG posts and personal stories from our members.
Awareness Packs have been delivered to many Group members who are planning their independent activities and will report back to us for inclusion in the Blerb in future months.
4. What advice would you give to parents of a child that has recently been diagnosed with Erb’s Palsy?
My first piece of advice would be to seek a medical appointment with an Erb’s specialist … whilst local consultants are well meaning they will not have the experience of Erb’s Palsy that an Erb’s specialist will and it is vital that the Integrated Care Pathway is followed to ensure the baby is seen at the appropriate age. I would always rather a Group member and their family have a wasted journey to a specialist and be told that no intervention is required than they miss time sensitive treatment. As we have seen over the years, even those who require no medical intervention as a baby can develop difficulties as they grow and to be under a specialist team from an early stage can ensure continuity of care and the right input when required.
The second piece of advice would be to be kind to yourself. Having a new-born is challenge enough but when faced with hospital appointments, physiotherapy regimes, possible surgeries … the emotional rollercoaster should not be underestimated. I was given a copy of a poem at this stage called, ‘Welcome to Holland’ by Emily Perl Kingsley and whilst it was written in relation to having a baby with Downs, it expresses similar emotions I feel are relevant for an Erb’s diagnosis.
5. What things can parents do to help their children that have Erb’s Palsy?
As stated above, seek that all important Erb’s specialist referral.
Be strong and be positive – this is not always easy when faced with a child who is striving independence yet struggling with a task we’d consider a simple everyday task but sometimes thinking outside the box, realising that a different approach is not a failure, is a major accomplishment.
Join our active Facebook Group! There is an endless supply of other parents and adults with Erb’s just waiting to offer support in any aspect of the Erb’s journey.
6. What advice would give to children and young adults affected by Erb’s Palsy?
Talk! Don’t hide your disability. The only way to ‘normalise’ and educate is to speak up. Also don’t be afraid to ask for help if there is something that is troubling you or you are finding difficult. There may be a simple solution and there are always people willing to advise and support.
7. The EPG is celebrating its 25th anniversary this year, how has the charity developed over the years and what are the goals for the future?
When I joined the EPG with Caitlin 19 years ago I was member 697 … we now have over 3,400 families registered with us and many professionals. There have been changes over the years to the Board of Trustees but the goals have always remained – to support families and educate the wider community about the condition and Charity. The way this has been achieved has however expanded. With thanks to substantial support from a number of funding organisations/companies we have expanded our publications available, we have been able to hold annual Study Days and reach more and more professionals, our annual family events continue to be well received. Of course social media has expanded and whilst it hasn’t always been easy, we have tried to stay up to date with technology advances … thankfully we have some who are more au fait than others in this department!
As for the next 25 years are aims are to continue what we’re doing. We are not naïve to think we have achieved enough. We still need to reach more professionals and thereby hopefully reduce the incident rate further. We still need to reach professionals to ensure the correct pathway of care is adhered to – Our Northern Ireland Representative has recently helped us to extend the Care Pathway for the referral and treatment of babies living in Northern Ireland. We still need to listen to our members and act on what they feel is important – we are currently working on a new publication for parents with Erb’s. We need to continue to offer day to day support to our members, new and old and provide opportunities to meet as nothing is ever as effective as having a friendly chat over coffee and cake but to do this we need to continue looking at new and initiative ways to raise funds as this is our largest concern and has been for some time. Funding is harder to obtain and
sadly our endeavours cannot come to production without financial support despite the free time our volunteer Trustees put in to their work.
8. Can you share with us some of the EPG’s proudest achievements?
The Herbie Trilogy of course …. did I mention I am the author of the books?!
Seriously, I feel the professional networking and personal friendships we have achieved over the years are our finest achievement.
We have contributed to the development of Nellie the lifelike simulator used in the PROMPT Maternity Training by Professor Tim Draycott et al which is widely used in the NHS throughout the UK.
We facilitated the only UK study into the long term issues of Erb’s Palsy on the ageing body by Dr. Cecily Partridge and Susan Edwards.
We have carried out a recent Quality of Life Study on the effects of Erb’s Palsy on those affected by the disability and those who care for them.
We are currently working in Partnership with the University of Warwick Medical School, the Perinatal Institute and variety of NHS Trusts on a randomised study looking at whether Induction of Labour can prevent Shoulder Dystocia.
Our invitation to participate in these Studies confirms that our Organisation is the recognised expert in Erb’s Palsy in the UK and we are currently the ONLY parent support organisation to have been allowed to give a presentation at the prestigious Narakas Symposium for world leaders in the Surgical field for treating this condition.
Ultimately though, we are a Group of Mums (and one Dad – we cannot forget Gary Hillyer!) whose commitment has borne from a desire to pay something back to the Group for the support they received initially and to ensure other parents and families have a greater support and information network going forward. Who’d have thought we would have such a professional body of people willing to work with us in this quest including solicitors, obstetricians, midwives, plastic surgeons and all their team members. I know all Trustees also have a host of personal friends for life from the work they have been involved in.
For more information on the Erb’s Palsy Group, visit www.erbspalsygroup.co.uk