'A Parents review'

Ahhh …… Relax …… It’s been a busy day ……… So why am I still buzzing!
Well it’s simple. I, like many others, have just spent the day at the ME North East Young People’s Conference. I must be honest and say that I was not sure what to expect. The Agenda appeared formal and with so many ‘specialist’ people involved I thought most of the information would go straight over my head. But I thought I might pick up the odd snippet of information so I went along to see what the current state of play was. I'm so glad I went, the Conference was excellent!

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.

It was then time for a short break. Some of the Young People took this opportunity to go to the 'Rest Room' that had been set aside, whilst others joined in with the Crafts. 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.

Jane Colby used both images and poetry written by young people to give her presentation regarding the rules of education for people with ME. It became obvious through discussions that the levels of service available in the various LEA's is inconsistent, with some schools not necessarily aware of their legal responsibility. I glanced round to see many of the delegates making notes during the discussions, this is quite clearly a real problem for many people.

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.

My overall impression of the issues raised today is that different areas have different levels of care and assistance. I had not, until today, appreciated just how much effort is being made by such a small group on behalf of all ME sufferers to bring an acceptable and consistent level of care to all. Their dogged determination and ingenuity in the face of the huge task they face is inspirational. They are real people actually dealing with the real issues that affect ME/CFS sufferers and their carers.

Thank you to everyone who helped to make the day such a success!
Pauline Smith – Emma’s mum!

Pictured above Jennifer with the Mayor of Durham