Your Community Needs You!

Mental Health Awareness Week has more significance this year than ever before as Covid-19 and the need for lockdown has understandably brought mental heath issues to the forefront as many more of us struggle with anxiety and depression. We have also witnessed a re-emergence of true community spirit and the power of community action…

We all want to belong. And if the current situation has shown us anything it is that communities make our life better. It has also made it very obvious that as individuals we don’t just belong to one community, but that we can, and do, belong to several. Bound together because of what we believe, where we live, where we work, where we send our children to school or even the gym we choose to go to.

It has taken a catastrophic event like a global pandemic for us to totally appreciate that geography no longer plays a part in whether you can belong. The internet it appears eliminates it as a consideration completely. We are able to reach out and connect with each other despite not being able to be close physically. Take my uncle for example. He is sharing his love of singing with 500 other equally passionate people in a choir based the other side of the world in Australia. Or the phenomenon that is Joe Wicks who has inspired young and old to keep active, with millions of people tuning in daily from all around the world!

I passionately believe that the experience of adults with Cerebral Palsy can, and should, be better. Furthermore, I believe that by giving a voice to the community, we can challenge the status quo, and by making enough noise, we can make a difference. One only has to look at the environmentalist Greta Thunberg to see how even just one person can make a huge difference.

The Adult Cerebral Palsy Hub community is made up of sufferers, supporters, carers, donors, medical professionals, researchers, family and friends.  What binds us together as a community is that we are all motivated to make things better for adults living with Cerebral Palsy and together at Adult Cerebral Palsy Hub we are becoming a movement – A MOVEMENT, TO MAKE THINGS HAPPEN AND GET THINGS DONE.  A movement that can, and will, bring about change.

“A movement is thrilling, It’s the work of many people all connected, all seeking something better.”  – Seth Godin; marketer

Like many who have tried before, we aren’t lacking in ideas of what and how things could be better for the CP community.  We have spent the last eighteen months confirming what we need.

  • Better understanding and recognition of CP as a life-long condition
  • Specialist Services and clear care pathways
  • Parity of care to that which is afforded to other long term conditions.

Aspirations that are now endorsed by the publication of the Nice Guidelines and Quality Standards and evidently supported by the professionals and the community who attended our conference in November.

However, it may surprise you to know, despite the publication of these Standards there is no compulsion for the Commissioners and hospitals to act to change services or indeed NHS England to compel them to do so.

We understand that for a small and relatively new organisation like Adult Cerebral Palsy Hub overhauling the NHS is no mean feat and that it is too big a task to accomplish alone.

So, we have set about trying to empower our tribe, our community – YOU – to do it for yourselves, to connect to one another and to spread the word. In this way together we as a community will become a movement for change.

 

With a background in coaching, I feel it is at this point incumbent on me to remind us all what we have already achieved.

We have….

  • Grown our membership
  • Raised the profile of Cerebral Palsy as a lifelong condition.
  • Built partnerships with medical professionals, researchers, and other 3rd organisations and policy makers in a bid to improve knowledge and services for adults with Cerebral Palsy
  • Influenced changes in practice on the ground
  • Built our reputation nationally and internationally

We have also learnt that there is a difference between telling policy makers what we want – that invariably falls on deaf ears and at best is received with empathy and pledges of support but little action – and making enough noise that we are heard.

We have had it confirmed by “friends” at NHS England, that the only voices that are really heard are those of the community, the louder the better.

So my message to you today is that WE NEED YOU. (Perhaps the recent VE day celebrations makes it acceptable for me to steal an old, but effective message).  We need your voice, your vision and your passion. I believe change can happen when we come together as a community. When we talk to one another, when we support each other and when we spread our ideas within our community and beyond.

What can You do today?

Reach out and support each other

  • Joining our new Covid-19 Support Facebook group
  • Log on to our new virtual afternoon teas and chats
  • Send in your questions and we will ask the community for you in our regular newsletter
  • Tell us about services and professionals that have helped you so that we can share it and everyone in the community can benefit.

Talk about us

  • Follow our progress on our website or our Facebook page
  • Talk about us with friends, colleagues and the wider community
  • Follow us and talk about us on social media @adultcphub
  • Connect people who may be able to support us and each other

Share your story with us

  • What does CP mean to you?
  • How does your CP effect your day to day life?
  • What do you think would improve things for you?
  • What has the impact of Covid-19 been for you?
  • Consider sending us a blog or a vlog for the website

Offer professional skills

  • Do you have skills that would support our community?
  • Do you have skills to offer that would help secure the success of the charity?

Fundraise

  • Tell us about your ideas for fund raising
  • Take part in a charitable event on our behalf
  • Become one of our regular donors by setting up a direct debit of an amount you can afford

Give us feedback

  • Help shape the direction and success of the charity by giving us regular feedback.
  • What are the big issues for you?
  • How can we help you?
  • Where would you like the direction of the charity to go?
  • What are we doing well and where can we improve?

We look forward to hearing from you soon.

Sending my best wishes to you all in this difficult time.