AGM and Conference

It was hell getting the day organised but it was worth every bit of it! Birmingham Children’s Hospital was the venue and they certainly did us proud! Registration was in the conservatory (with bacon rolls, croissants, tea and coffee) and delegate packs were given out to everyone.

Lots of people took the opportunity to chat as families began to arrive in a steady stream. The marshals were kept busy making sure no-one took a wrong turn in the hospital. The crèche was in two rooms as there were about 60 children present in total so the older children were able to enjoy different activities to the under fives. The younger children were looked after by a team of NNEB nannies and skilled assistants, who did a fantastic job in settling down even the smallest of babies in a new and unknown environment.

The first session was a talk by Dr. Oliver Stümper, Consultant Paediatric Cardiologist from Birmingham, who gave a fascinating talk on the types of heart defects more usually associated with a 22q11.2 deletion, how they are managed and what triggers doctors to do the FISH test at BCH.

Then Dr. Anne Harding-Bell, Specialist Speech and Language Therapist from Addenbrookes Hospital in Cambridge, gave a super talk on palate issues, everyone was provided with a copy of her talk as a handout in their delegate pack… if you would like a copy of this highly informative document, then just give us a call.

Dr. Ahmad Al-Khattat, leg pains expert, gave a detailed talk with slides to illustrate the ankle and foot problems often encountered with 22q11.2 deletion. As always, he “wowed” the audience with his humour and personality! Not many people realise just how exciting podiatry is until they meet Ahmad!

The AGM was carried out swiftly and without much ado.. the Chairs Report, Treasurers Report, Accounts and Business Plan were agreed by the members and the executive committee was cordially voted formally into office .… mug shots of the trustees are on the back page. We are happy to provide any member of the group with a copy of the reports and the minutes of the meeting.

We managed to keep to the time schedule quite well, thanks to the efficient management of Sam H, but we were all looking forward to our food and it has to be said that the caterers put on a fabulous spread!

The children were called to have their named present handed over by our own jolly Santa (this also fulfilled one of Keith’s life-time ambitions!). We were fortunate to have a large supply of varied gifts donated by members,
notably Caren Prior. THANK YOU!

We were pleased to see Kirsty and Mandy from Contact a Family, and Local MP Julie Kirkbride who brought her young son, Oliver, along - they even agreed to have their photo taken with Gary!!

There were many cries of “fix” when the winning ticket was drawn in the raffle… even Julie Wootton couldn’t believe the co-incidence… Julie Squires, the South East co-ordinator for Max Appeal! had won the Samsung 20” Colour TV donated by Geoff Hill Electrical, Amblecote. It is appropriate to give a very BIG “thank you” to Geoff Hill Charitable Trust, who has helped Max Appeal several times. His name will for ever be linked to the support of good causes in the West Midlands. THANK YOU!!

Raffle tickets sales topped £1,300 and there were loads of super prizes.

The afternoon session kicked off at 2.30pm Dr Anne Harding-Bell followed up her morning talk with two workshops. The first looked at “Speech, Hearing and Palate” This provided parents with some helpful hints and practical tips for aiding a child with a speech impairment.

The second workshop, “Language problems” was illustrated by a video of a child. This was appreciated by many parents who have phoned to express their amazement at how similar it was to their own experiences. Anne has a special interest in 22q11.2 and is keen to see specialist clinics set up recognise the problems faced by our children.

The third workshop was run by Nazreen Hussain of Birmingham Parenting Partnership. Parents were able to ask specific questions about the statementing process and of their child’s IEP. Parents were also supplied with a helpful information pack to take home. Most LEA’s have a parent Partnership scheme and this can be a useful source of inside information to help you with problems you may be experiencing at school. Parents expressed that they had been given useful ”ammunition” to go home with.

Parents were offered the opportunity to pre-book to see a specialist advisor in Benefits Advice—Jenny Jackson works full time for the PiA as a benefits advisor and generously gave her time to us. She talked through issues about DLA, ICA and mobility in strict confidence. Parents were also able to ascertain how these benefits affected their eligibility to others… always a minefield!!

Ahmad also saw individual children in a Leg Pains and Podiatry clinic and gave advice on leg pains and foot anomalies. He was able to offer suggestions as to shoe insoles and exercises.

Everyone re-assembled in the conservatory for tea, coffee and biscuits at 4.00pm. It had been a hectic day for everyone involved, but the aim of the day had been to give information and to get people together. We were very pleased at how the day went and thank everyone for their cards and letters and all those that filled in the evaluation sheet on the day.

All that is left to say is Thank you! And See you again!!