This year took an unexpected turn with the pandemic and the various restrictions that have followed.

The lockdown forced a lot of people to change the way they work and deliver services. For many people this meant fully embracing the digital world.

At Ison Harrison the use of video conferencing enabled us to carry out much of our work without anyone ever having to leave their desks. It opened up the door to interacting with people across the country on a personal level, whilst remaining in isolation.

However, it’s important to consider the impact of lockdown on charities and the much-needed fundraising that can’t go ahead quite as easily with restrictions in place.

For Erb’s Palsy Awareness Week 2020, we have asked the Erb’s Palsy Group to document their lockdown experience and advise how things have changed for their charity recently.

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How did the lockdown affect the EPG and how it delivers it service to members?

On a day to day basis, our service delivery to parents and those with Erb’s was mostly unchanged – social media and telephone services could still go ahead. In fact, due to Trustees who were usually out at work finding themselves suspended/furloughed from paid employment and no longer able to attend anything face to face, they found they were more readily available to answer calls and messages.

Obviously any face to face contact stopped immediately – this included the Study Day, Fun Day, Outreach and less formal meetings for coffee at hospital visits, or meeting new parents in their homes.

As a Board of Trustees we have not been able to meet face to face to plan for the year ahead. All communication has been done remotely. Whilst this is still valuable it does not allow for the spontaneity of ideas that flow through conversations at our face to face meetings. It has also cast uncertainty on future plans as we have not been able to meet and discuss those.

Awareness Week will take on a very different feel as previous cakes sales, ‘Dress Blue for Erb’s’ days, coffee mornings, etc. can not take place.

Probably the most important aspect of our work during lockdown has been continuing to advise re: early referral and the importance of seeking specialist care. In particular, 3 cases spring to mind where local teams have been unable/reluctant to refer on to specialists or even diagnose due to lack of appointments and delay with initial consultants. For these 3, we assisted in helping with referrals to the Leeds specialist teams which although done remotely in the first instance, offered face to face follow up appointments. Not one of these 3 cases had Erb’s and were then sign posted to the appropriate care and teams as a result – one had Cerebral Palsy, another Hemiplegia and the third, a life threatening tumour. Without that referral to Leeds who knows what the outcome would have been.

What services can your members currently access online and do you have any plans for how you will interact with them in the future.

Members can, as always, access our informative website, Blerb newsletter, Twitter account and of course our Facebook Forum – this has been busier than usual. Trustees remain available via email.

A large number of society suddenly became very isolated due to the lockdown and this in turn had an impact on their mental health. In an attempt to combat this our team had a video meeting once a week so we could see each other. (It’s all good chatting to people over email or text message, but being able to see their face makes a huge difference) We also held various video quiz events which were extremely fun to participate in and help boost everyone’s moral.

What did you or your members do to stay connected during this period and did it give you any inspiration for events going forward?

In addition to our usual Facebook activity, we undertook a virtual coffee morning – this was a little chaotic to say the least with many members typing at once and Trustees trying to keep up with questions and posts but was well received.

There was also a Zoom Meeting which a few members attended and it was lovely to put faces to names – this would usually have been done at a Fun Day but with that being cancelled for 2020, this was a welcome alternative.

The most interaction has been when we have called for photos of members to include in the Blerb or online … families love to share photos of their loved ones and were more than happy to engage with ‘Lockdown Physio’ photos and activities.

Herbie sent a number of letters and activity packs out to younger members which were also well received.

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Whilst we firmly believe that Face to Face contact is extremely important, it has shown that we can be versatile and will be willing to look into social media events again in the future.

How were your members impacted by the pandemic and how did they overcome any difficulties?  (eg: cancellation of hospital appointments)

Physiotherapy is a major part of someone’s life with Erb’s Palsy which they haven’t had access to throughout lockdown. We know some members went from having monthly (or more regular) input from physio and OT services to nothing, not even a video or telephone consultation as staff were redeployed – many families rely heavily on that input to supplement their parental input which could have been detrimental to their children and condition. There are many members/families who rely on things like swimming/climbing/sports and outdoor activities to aid physio and these have been more compromised with many being cancelled/unavailable.

We already provide a travel fund for those families on low income to assist with travel to hospital to ensure no one misses out on vital consultant input or surgery – with many parents on furlough or potentially losing income/employment this fund is even more important and we expect a rise in requests in the coming months.

The impact on individual’s mental health is still to be seen further as a lack of physiotherapy, access to pain management services, access to people members rely on to help in their every day life is to be seen.

We did see a rise in Facebook posts where people suggested alternative physio ideas that could be done at home – for example: Joe Wicks, Youtube, baking, bubbles, assault courses in the garden etc. We may not have had these useful suggestions in different times.

Also a lot of members had their surgeries cancelled – these are procedures that take considerable planning and preparation both physically and emotionally for the child and parent or young adult.

The pandemic meant that your annual family day had to be cancelled this year, whilst it was very disappointing because of all the hard work that goes into planning these events it was unavoidable.

What are your plans going forward all being well?

Our plan is to move all 2020 events to 2021 – we have been fortunate in that all activities to whom we had paid deposits to for the Fun Day, agreed to retain those deposits and honour our bookings when a new date was arranged. This way, neither the Group nor small businesses lost out financially.

However, with the current restrictions on meetings, we are still not in a position to set a date for 2021 and it may be that we need to review this plan. If so, and we see our larger event moved again to 2022, we will endeavour to do smaller, local meet ups throughout 2021.

How did your members continue with fundraising during the pandemic?

Unfortunately, we have seen a decline in fundraising. Facebook birthday fundraisers have been ongoing, as have Amazon Smile purchases but most large scale events were cancelled and along with them the funding opportunities.

The EPG are therefore looking at additional ways to gain financial support i.e. Pledjar or OneLottery are being considered along with online events such as an online gaming session.

All being well, what plans does the EPG have for 2021?

We are organising the Family Fun Day at Ormesby Hall, Middlesbrough, plus we have an annual Study Day in Coventry for Midwives and the Narakas Symposium in 2022.