Young People's Conference 2005
|
Over 100 delegates attended – Young People, Parents, Health Professionals, Carers and Specialists. The day provided a mix and variety of information, support, advice and experiences. We were extremely fortunate on the day to have 5 key speakers who all delivered informative presentations. Our thanks go to Nigel Speight, Mary Jane Willows, Jane Colby, Sue Pemberton and Maria Shortis for all their effort.
Parent Pauline Smith gives her story of the day Ahhh …… Relax …… It’s been a busy day ……… So why am I still buzzing! Right from the beginning the atmosphere was easy going, informal, good humoured, friendly and supportive, very informative and accessible to all. When I say accessible I don’t just mean from a movement point of view. I mean that there was something there on the day for everyone. The Conference began with delegates listening to the Young People talk of their experiences. It was incredibly moving. They were very brave to get up on the stage and speak frankly and openly about themselves, it took real courage. Their powerful messages helped to set the tone for the day and brought a real feeling of unity to the room. From a personal point of view, they highlighted a number of issues that I had naively not even considered, but their advice, resolve and determination to get round these issues, was inspirational. Dr Nigel Speight then took the floor. His words of 'confirmation' and 'verification' were just what I, and I suspect many others, needed to hear. Information regarding symptoms and suggestions of coping strategies were gratefully received. Dr Speight's presentation left me feeling revived, it was so refreshing to have someone on 'my side' for a change. After the break we then moved on to Sue Pemberton looking at Pain Management from St James Hospital, Leeds. This really is a fantastic service but quite clearly still a bit of a postcode lottery when it comes to where the service is available. Sue offered some really good advice on coping strategies, with suggestions such as pacing, massage and hydrotherapy. After the break came the turn of Mary Jane from AYME. Her presentation referred to The Royal College of Paediatrics and Child Health Guidelines to Paediatrics regarding the 'pathway of care for a child with symptoms of CFS/ME from the initial referral to a paediatrician to the establishment of a management plan and educational and social support'. A great deal of work has gone into this document and it is good to know that there are people working really hard to raise awareness and to get to grips with one of the hardest aspects of ME and that is getting an early diagnosis. The final presentation of the day was given by Maria Shortis. Her presentation regarding benefits and the kind of support workers and groups available was enlightening. Suggestions of where to seek help was useful, though the level of assistance available from area to area, once again, appear to be a postcode lottery. At the beginning of this piece I said that the event was accessible to all. Not only were the presentations interesting and very informative but there was also literature available that could be brought away and read at leisure together with display boards which showed photographs of workshops and fundraising events that the Young People have been involved in. I know the team at Bullion Hall have the literature available so if you require further details about any of the presentations why not contact them. Thank you to everyone who helped to make the day such a success! Pauline Smith – Emma’s mum |