English AGM 2001

Held on the 16th June, at the Portland Basin Museum, Ashton under Lyne, this year's AGM proved to be a most enjoyable occasion. The welcome was very warm both emotionally and physically (a little air-conditioning would have been an asset).

Many members attended with their families and the excellent facilities offered in the Conference Suite gave us plenty of space for creche facilities. We had hoped to have a ride along the newly opened Huddersfield narrow canal. Unfortunately, it had to be cancelled as, at the last minute, the barge was not available (MOT equivalent). However, the children were taken round the Museum (situated on the ground floor) and found the scientific hands-on display "Nuts and Bolts" a good deal of fun.

The talk by Marco Pozzi (Consultant Surgeon at Alder Hey), and subsequent discussion, were exceptionally interesting. He gave everyone a great deal of food for thought.

Hopefully, the Association will be able to help re-build many of the bridges which have recently been damaged between parents, hospitals and the medical profession in general. It is obviously in all our best interests that this happens. Mistakes have been made in the past but if we want our children to get the best treatment, safeguards have to be in place to both protect against bad medical practice and support good medical practice. The secret appears to be in communication which in some instances, as we all know, has been sadly lacking in the past.


Representatives of the branches who were able to attend, each gave a brief resume of the past year's events. It is getting ever more difficult to compete on fundraising with all the other charities now around and new members are difficult to recruit. However, we have a solid core of members and a good deal of new interest is being generated through the website. We average 7 visits per day to the site and many of these have resulted in requests for further information. Some are from overseas and we are happy to pass on information regarding day to day treatment as well as sourcing centres where new procedures are being developed. Unfortunately, we do not have the infrastructure to help with funding. Where necessary we have passed enquiries to other organisations such as Heartcare, Left Heart Matters and the Myocardiopathy Association. News from the branches is extremely important and anyone who had any news or information was asked to pass it on so that it can be included in newsletters or the website.

New tri-fold leaflets have been prepared and, subject to final approval, these will be available shortly.

Manchester branch brought a sample of a Dinamap Pro 1000. These units provide a non-invasive blood pressure monitor and an ECG in a portable device. Manchester branch is hoping to purchase some of these units very soon.

It was agreed that communication is the key to the future progress of the Association and is essential if we wish to ensure facilities are available for our children in the future.

All branches had nominated the present Committee to continue in their current roles and they were, therefore, re-elected.

Thanks to all who attended and helped make it such a good day.

Note: More information about Portland Basin Museum can be found on the Ashton-Under-Lyne website at www.ashton-under-lyne.com/portland.htm.