East of Scotland Branch of Ataxia UK
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East of Scotland Branch of Ataxia UK |
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Sue Millman joined Ataxia UK on 29 June 2007. She attended our September branch meeting and is enthusiastic about getting involved, meeting people and encouraging Branch activities.
This government consultation exercise with adult carers has now ended and the results are on the New Deal for Carers website The survey asked: "What would make a positive difference or improve your life as a carer? Have you got an idea that could change carers' lives? The aim was to make sure carers' voices were at the heart of the Government's new carers' strategy.
Sue Millman writes:
I’m writing to introduce myself as the new Chief Executive of Ataxia. I took up the post last week and have received a kind welcome from trustees and staff, and a helpful handover from the Interim Chief Executive, Margaret Malcolm.
I have worked in a range of national and local social care organisations in the voluntary sector for over 25 years - mostly in charities and housing associations that support people to live independently.
I’m looking forward to getting around the country to meet Branch and Support Group officers and members. I’m already impressed by the amount of organising and fundraising undertaken by Branches and Support Groups and I want to ensure that we do everything possible to facilitate their operation.
I’m keen to discuss with Friends their vision for Ataxia UK so that it can inform our new corporate plan (April 2008 to March 2011) which I shall be developing over the next six months. My first opportunity to do this with Branches will be at the Branch Officers’ meeting in Leicester on the weekend of 13 July. (There are still some places available for this meeting, if you would like to come, please contact Tina Thatcher on 01782 791 131). In addition I’m already looking forward to the Annual Conference in Harrogate on 15th September and hope to meet many of you there.
Scottish Disability Equality Forum (SDEF) consultation document on the enforcement of regulations regarding disabled people and air transport (pdf document 73kb). More details on air travel for people with disabilities on the Department for Transport website
Message from Hilary Box, Marketing & Communications Manager, Ataxia UK:
The new discussion forum is going well & in fact many branch members are already posting & two are helping us to monitor usage. I am keen to develop a young person’s forum, especially for the 16 – 18 year olds group, but this relies on them posting messages. Anything you can do to encourage them would be great. I think it will be easier once there is a bit of ‘seeding’ . If you can think of groups & branches with a particularly strong representation of young people, maybe you could ask them about it. That could include young people with parents with ataxia, for example.
I am also very keen on establishing a carer’s forum – again, this needs people to send in posts.
Everyone is welcome, of course. Just to remind you that young people under 16 should be supervised by an adult – full details in the terms & conditions http://www.ataxia.org.uk/forum/
The Genetic Interest Group (GIG) is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders.
An early finding of the current Family Route Map project was that the majority of patients and families affected by the six genetic conditions in the project would prefer to have a multidisciplinary approach to care with a clinician who has expertise in that condition coordinating their care. As a result GIG conducted a survey to find out if this was also the case for members of our organisation.
The Brain and Spine Foundation had a neurological steering group, set up in 2007, which was part of a three year project on breaking down the barriers of communication between older people with neurological problems, their carers and professionals.
The British Red Cross has developed a new approach to delivering first aid training to groups or individuals who may require a more flexible approach to learning first aid skills. They are currently building their capacity in working with various vulnerable groups, especially disabled people. The programme is an alternative to the administer first aid programme and fosters an approach whereby the delivery and content of first aid training are led by the needs and abilities of the participants and includes an adaptable assessment system. More information is available at:
British Red Cross - Inclusive First Aid
Following our successful hosting of the Ataxia UK Research Conference in Edinburgh in July 2004, another conference took place at the University of Hertfordshire on 15th September 2006 (link opens as a pdf file).
This page was last updated on March 29, 2010