Name: Ed Coates

Living in: Ramsey, Isle of Man

Family details:
Married to Sue with Two Children – Emily (18) just starting at Manchester Uni (Sept 10)… and Freya (15) – just starting year 11 at Ramsey Grammar School GCSE year.

At Work:
I am a Child Protection Manager responsible for independently reviewing the quality and management of all Child Protection Plans on the Island. I have a number of other responsibilities regarding the provision of Social Services to children, particularly to children in care. I have worked in Social work since 1979 when I started out in a Children’s home in Westminster. I love the job – I enjoy being able to make a difference in peoples lives and I get so much back from it despite it often being tough and sometimes distressing work.

Outside interests:
Love Classical Music and several other musical genres as well, singing and learning the Piano. Cycling, Football (Preston North End) Cricket (Lancashire), Sailing, Poetry, Theatre…..I could list more – favourite book – War and Peace by a country mile!

How long involved with the charity: as a member three years – as a Trustee two.

My Particular charity interests:
Main Priorities: Probably the most important thing is to develop the charity in a way that it is in a position to provide a greater range of services and support to members.
I am particularly interested in issues around younger people (and those of their parents) but this is not an exclusive concern. I am also aware that this is a lifelong condition and children become adults thus very interested in every experience. He would like to consider ways of collating the wide range of needs and experiences of all members (and indeed those sufferers who have no diagnosis, support group or networks out there). Another concern is that there is a lack of other sources of help – financial, emotional and psychological for people with the condition – and there is certainly ignorance at all levels. There is no easy route in to information nor even concurrence on what does/what does not work.

Some ideas

Some of the things I would like to look at if there is general support for some or any of them would be to continue to develop the organisation in many ways as is now planned but in particular some or all of the following:

• Staff to provide additional administrative support and improve links with and from members.
• Staff or access to services to provide caring support/advice to members and their families and/or
• Lobby for a national resource e.g. something akin to a specialist nurse for epilepsy that is available in many health authorities.
• Run groups for members of different ages/needs/and in different locations.
• Provide links with key agencies where members are having difficulty accessing resources or obtaining appropriate diagnoses or treatment.
• Provide support and seek funding for members who may need help in accessing events such as local or national meetings.
• Set up more active awareness campaigns

Why this charity?
It was there for me/us when my daughter Freya developed Narcolepsy. But it was very apparent that the Charity could do much more and that there was and is a large, possibly huge need for a campaigning, supportive, informative, friendly networking, etc etc organisation to make up for the absence of other services/treatments and supports available to many sufferers.
And now …lastly but by no means least; because I have made so many good friends through meetings and Conferences.