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RETT SYNDROME ASSOCIATION UK

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World Congress Paris 10 - 13 October 2008
 

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Photo of girl with Rett syndromeSupport ServicesManager

The Support Services Manager role has replaced the Family Support Worker role, which had been in place since 2000.

The title of Family Support Worker has had a specific meaning in social care - someone who provides support (including the `hands-on type) and advice to families in someone’s home as part of a care team. Although we hope we provide good support and advice unfortunately we can’t visit families. The title Family Support Worker has also not reflected the breadth and scope of what we do on behalf of families and on behalf of the organisation – education, policy development, advocacy to name just a few. The new title will help us maintain and enhance RSAUK’s credibility in the social and health care fields, and ultimately help you – especially in the letters of support we often write on behalf of our members.

We continue to provide proactive support and advice to families, especially through periods of change, difficulties and crisis. Over the last few years we have – together with our Information Manager - put systems in place to be able to do so this effectively as possible. We hope that our guidance notes on Respite Care, Benefits and Statementing will help to empower you as parent carers, especially during difficult times. For example, by giving you relevant information and enabling you to ask the right questions with regard to obtaining services or getting an assessment for your daughter or son. Information can truly be powerful. However we recognise that in itself this may not always be enough. Local authorities and health services do have financial restrictions and overspends. Too often you may have to 'fight' your corner, but you don’t have to do this alone.

We are here to provide ongoing advice and support to you, on your particular situation and circumstance. We can also write letters of support, and suggest questions and issues to raise at meetings. We are also here with a listening ear; someone who you can speak to freely, when things are complicated, frustrating or just getting on top of you. We do make a brief record of calls on our database system, so that we can keep track of what is happening for all our families.

Finally, we want to listen to what you tell us are the most important issues and how best we as an Association can support you.

Feedback is very important to us, as we want to know whether we are actually giving the support that you as parent carers need and want. Although we may not be able to follow up on every suggestion, your input is still invaluable, and may form the basis of future plans. If there is anything you would like to say, please do write, call or email. We’ll keep you up to date with what we’ve been up to via Rett News and of course this website! Our members are at the centre of all that we do, so we need you to tell us how we’re doing!