C.E. Jottings

More on parents

My early morning efforts to keep myself occupied seem to have turned into something of a thread about CP and parents. Another study that's caught my attention is from the north of Sweden, published in the European Journal of Paediatric Neurology July 2009, just before the summer holidays, so you may have missed it (Ok the last bit was a joke): "Comparison of impact on mood, health and daily living experiences of primary caregivers of walking and non-walking children with... Read more →

Behaviour problems in children with CP. Are parents to blame?

This morning I have been awake since 4.00am. That was when my daughter woke and was unable to get back to sleep. I wonder about the damage being done to my aging brain of disrupted and insufficient sleep. Sitting here at my computer, waiting for daylight, my attention was caught by another (see my previous posting) research report "Course of behaviour problems of children with cerebral palsy: the role of parental stress and support" published in Child: Care, Health and... Read more →

CP & Research - yes, but what?

A recent study (Consensus research priorities for cerebral palsy: a Delphi survey of consumers, researchers and clinicians) published in Developmental Medicine and Child Neurology aimed to identify questions for future research that were agreed to be a high priority.Method An expert panel of consumers, researchers, and clinicians was assembled (n=127) and surveyed. Sadly, like so much published research, the full study is inaccessible to the lay reader - as a fee is required to do so. The abstract is available,... Read more →

The best health service in the world.

From today's Independent: Ian Birrell: Why I don't believe that the NHS is sacrosanct "In this heartfelt polemic, based on his family's experiences in the health service, our writer argues that it suffers from deep flaws – and we are wrong to ignore them." Ian Birrell's article is worth reading. Speaking at the AGM of a parent information charity here in Sheffield, I once recounted the experiences of a family with a disabled child, much as Ian Birrell does here.... Read more →

Parent Power?

In an article Parent Power? Parent Power! in the latest edition of Interconnections Quarterly Journal "a parent of a child with special needs .... relates her recent experiences as a Parent Consultant and founder of a Parents’ Forum. She discovered that professionals have a much more positive attitude to parents groups that are led by professionals than to parent groups that are led by parents and carers. She also discovered that it is felt appropriate for parent groups to discuss... Read more →

Who speaks out for children with cerebral palsy and their families?

Scope is seeking a new Chief Executive. I first saw the advertisement for the post in The Sunday Times, yesterday, 2 August. As the advert says: "This is one of the highest profile leadership roles within the UK" which, for the right person, "will give significant challenge and reward in equal measure". What is not said in either link above is that Scope is the charity in the UK for children - for people - with cerebral palsy and their... Read more →