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Welcome 2019!

Look out for some more exciting activities this year with TAG.

But back to 2018 for a minute.

What a great year for TAG

• We had regional get togethers in London, Chelmsford, Newcastle, Yorkshire Wildlife Park, Cardiff, and RAF Cosford. On top of that we had a day conference at the Falkirk Wheel for our members in Scotland.
• We had our usual very successful Family Weekend in Coventry with great speakers on subjects as varied as Motability, Accessibility at airports and on planes, and Arthrogryposis in children.
• We had a separate talk on Adults with Arthrogryposis too. See below on further information on TAG clinics for adults.
• A couple of TAG Trustees attended the British Society for Children’s Orthopaedic Surgeons for the first time. It hugely raised TAG’s profile with these consultants. So much so, we have a couple of new clinics that we will attend. Again, see more information below.
• I was invited to speak at the British Airports Expo held in Olympia in London about disability access – or lack of it - at airports and on planes. This was in front of luminaries such as the bosses of British Airways, Virgin, Easy Jet, Heathrow Airport, Gatwick Airport, CCS, CAA, and others.

Clinics

TAG representatives are now attending clinics at Great Ormond Street, Birmingham Children’s Hospital, Great Northern Children’s Hospital in Newcastle, Oswestry, and Glasgow Children’s Hospital. See below for what we do at the clinics. We have been publicising ourselves at these clinics and have gained a good number of new members. It is worrying that there are still so many people ‘involved’ with Arthrogryposis who know nothing about us! I do include medical staff in that statement.  The good news is that we will now be attending Liverpool Alder Hey clinics. Also,  Cardiff is going to start a clinic soon with our help. And, whisper it, we may have another couple of new hospital clinics starting this year. The NHS does move exceedingly slow sometimes.

As most of you probably know that once you have reached 16 or 18 years old, we are no longer able to attend children’s clinics. At that age it MAY not matter much, but as we get older, more of us are needing medical advice re our Arthrogryposis and often in conjunction with other ageing processes. At the moment we only have one clinic that deals with adults and that is at Oswestry under Nigel Kiely. Now we come to the bad news. We have been trying to get more adult clinics. Unfortunately, this has proven unsuccessful. Not because its TAG but because of the specialism in adult orthopaedics.

The following is a precis from our discussions: Paediatric orthopaedics is perhaps the only area of orthopaedics where a single surgeon might deal with hip, foot, and shoulder problems. The adult sector is much more specialist and there are consultants that deal purely with feet, shoulders, hands, spine, etc. and do not treat any other body part. This is also beginning to happen in paediatrics and trauma too. For all children with ‘rare’ conditions including Arthrogryposis, cerebral palsy, and spina bifida there just isn’t a generic adult ortho pod who will have the expertise to cover everything. You can see that the way adult orthopaedics is practised is different to paediatrics. So, if there is a consultant out there reading this and feels they can help please get in touch for a chat.

Now I come to a request for help from our members please. We need help at the children’s clinics that we are already attending as well as the new ones. Just to remind you they are held at Birmingham every month, Newcastle every three months, GOSH every three months, Glasgow every three months, Liverpool Alder Hey every three months, Oswestry every four months, and Cardiff every six months. I am not asking you to attend every one but if you live in the area perhaps you could help at one or two.

Basically, we chat to the patients and /or their parents, more often. Put them at ease if its their first attendance and try to instil confidence in the future of their child. Tell them about TAG and how we can help, advise and support, etc., etc. The clinics are either in the morning or in the afternoon and you would be given plenty of notice beforehand. We will pay expenses if you wish. If you want to know more then please contact me on 07989582249 (after February 22^. please) and I can tell you more. Trust me when I tell you this experience is one of the most rewarding experiences you will ever have!

Hospital rules insist you would have to have Enhanced DBS check which we would do with you and pay for.

The Family Weekend for 2019

This will be in the Midlands again and in October. The date has yet to be finalised so keep your eyes open for further info. By the way if you have any ideas for speakers please let us know. Similarly, we will be having our regional get togethers and info on those will be coming soon too.

You have probably noticed that we are trying to get a ‘Camp’ for teenagers up and running. If you have children then please read the following:

Activity camp for teenagers in 2020

We are in the early stages of planning and want first to speak to teenagers with AMC and their families, to gauge interest.  Camp does not mean camping in tents but a residential break to try activities that you may have thought impossible.

Things attendees have done in the past have been abseiling, rock climbing, sailing, canoeing, zip wiring, caving, and nights out bowling and to the cinema etc. We have found in the past that children with AMC can do so much with the right equipment and supervision by qualified experts. If this sounds like a fun way to spend a few days we need to hear from you as soon as possible. You don’t need to commit yet but, we can only put this on if we have enough interest. Please contact TAG in the usual way via Facebook and help@arthrogryposis.co.uk.

I hope to see you at one of our events this year.

Chairman