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February news

NEWSLETTER FEBRUARY 2020


Well, what a year 2019 was for TAG. We are powering ahead in many different ways. The main achievement is we now have over 600 members. It was only 4 years ago we had less than 80.

My favourite achievement of TAG is the success of the dedicated AMC children’s clinics that we have established or re-established. We now have clinics at Alder Hey Liverpool, Birmingham, Cardiff, GOSH, Glasgow and Oswestry. Because of our attendance at these clinics and the help and advice we give their patients, several of their consultants are suggesting an increase in the frequency of their AMC clinics. Indeed, Birmingham, Oswestry, and Glasgow are going ahead already

I am hoping too that we will restart our attendance at Great Northern Children’s Hospital at Newcastle after a hiatus of over a year. We now have been invited to attend Leeds AMC clinic. More on these two soon.

Talking with/negotiating with hospitals and consultants to start clinics for AMC children can, and does, take a long time. Currently, I am ‘talking to’ the hospitals in Bristol, Manchester, Norwich and Norfolk, Sheffield, and South of Thames London hospital. I am hoping by the end of 2020(!!??) we will have some more clinics running.

This brings me to one of my perpetual requests:
We do have some volunteers that attend these clinics but we definitely need more for the existing clinics mentioned above. Before we go any further negotiating with the possible new hospitals listed above, we need volunteers for those too. We can’t have clinics if we don’t have volunteers to attend them on our behalf.

If you volunteer, I promise you it is stimulating, rewarding, and very worthwhile for all concerned, So, please phone me on 0798 9582249 for a chat or get in touch with us via help@arthrogryposis.co.uk or through Facebook.

______________________________

Vicki Adey is our new Treasurer
Vicki's introduction:

"Hi,

I am so pleased to be back on board with TAG. As many of you may know I have been onboard as a trustee before but this time I have a completely new role to before: Treasurer. I shall endeavour to look objectively at figures and do the best I can for you all whilst also giving you the opportunity to meet each other and have some fun. Please can I ask you all to keep supporting TAG, and, if everyone of us can do our bit of fundraising it will ensure we can continue to have the events that bring so much joy to all.

If anybody wishes to contact me with any questions, ideas or just to chat please email me on treasurer@arthrogryposis.co.uk

I look forward to seeing you in 2020

Vicki"


 


Thank you!

We would like to thank Mrs P J Young for her cheque of £200 which was received on 15th January.  It is very much appreciated and will be spent wisely. 

 

 



AMC Clinics & NHS education

AMC CLINICS

In the next few weeks, I hope to be able to advise you of several new hospitals that will have dedicated AMC clinics. It does take time! 

We are still looking for volunteers to help at the clinics that we now attend. We have had some volunteers but we particularly need more for Birmingham, Cardiff, Glasgow, Great Ormond Street, and Liverpool. If you can help please get in touch via the usual contacts, as above.

Educating the NHS (and others) about AMC!

Because we are spreading our wings and getting better known, in the last year TAG have been invited to three medical conferences, with a fourth one coming up in early November. We have also attended a couple of other non-medical, but relevant meetings. e.g. Access issues at airports and airlines.

 

Peter Lacey

 

 


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