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.
News from Tina Thatcher - please use this link to access a government consultation exercise with adult carers: http://www.newdealforcarers.org/accessible and feel free to take part. The survey says: "What would make a positive difference or improve your life as a carer? Have you got an idea that could change carers' lives?
We want to hear from you to make sure carers' voices are at the heart of the Government's new carers' strategy. That's why we've set up the Ideas Tree. You can post a message, tell us an idea, read what other people have said and let us know whether you agree. All ideas are welcome - big and small. The Tree will be live until mid September 2007."
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/
Could you help by completing the attached survey for GIG? (Word document) It should only take a couple of minutes. THANK YOU. Alternatively, the same survey is available as a pdf document.
An early finding of the current Family Route Map project has been that the majority of patients and families affected by the six genetic conditions in this 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 would like to find out if this is also the case for members of your organisation.
Would you be kind enough to complete and circulate to your members this brief survey to those involved in your organisation and any clinicians who you feel may wish to contribute. In this way we may be able to put together a bid for funding to initiate and support some Pilot Networks.
This survey is also available on the GIG website http://www.gig.org.uk/latest-news.htm
Please return your completed questionnaire in an envelope to our Freepost address below or by email to melissa@gig.org.uk.
Freepost RRAR-SZJE-YSTU
Genetic Interest Group
Unit 4D, Leroy House
436 Essex Road
LONDON , N1 3QP
The Brain and Spine Foundation have a neurological steering group for which they would like a patient/carer to participate. This would involve them attending about three meetings a year, to be held near Waterloo, with the first meeting in July. If anyone is interested they can either contact Laura Stewart (Research Officer, Ataxia UK) or get in touch with Helen Menzies at the Brain and Spine Foundation helen.menzies@brainandspine.org.uk, mentioning that they are a friend of Ataxia UK. This is part of a three year project on breaking down the barriers of communication between older people with neurological problems, their carers and professionals.
If you have a particular interest in joining the steering group or want to share your experiences of good and bad models of practice – or if you would like more information on this project, Helen would be happy to discuss this further, just contact her on the details below. There are already several professionals that have committed to this group but to strike the balance it is necessary to have input from patients and carers too.
Contact: Helen Menzies, Brain and Spine Foundation
7 Winchester House,
Kennington Park
Cranmer Road,
London SW9 6EJ
0207 793 5908
Contemporary physiotherapy practice for people with ataxia: the perspectives of people with ataxia and physiotherapists
We are looking for people with ataxia to participate in a discussion group with other people who have ataxia about topics such as their experience of living with ataxia, strategies used to maintain activity levels and experiences of physiotherapy treatment.
If you are over 18 years old, have been diagnosed with cerebellar ataxia for more than 6 months and are interested in participating please contact Elizabeth Cassidy, Lecturer in Physiotherapy at Brunel University, for more information. Telephone 01895 268736 or e-mail elizabeth.cassidyATbrunel.ac.uk
Research ethics approval has been obtained for this study from the School of Health Sciences and Social Care Research Ethics Committee, Brunel University.
Flyer with information on this study (powerpoint file, 1 page, 113KB).
Survey forms are flying out of our door at the moment, and quite a number have already been returned by carers. A reminder that there is an order form on the front page of the current newsletter and that we can provide you with a maximum of 100 questionnaires, or alternatively you can email delivery details to us at mailATcarersweek.org As well as the paper form carers can complete the survey online at www.carersweeksurvey.org.uk
A pdf of the registration form is attached - please return to us as soon as you have some information about the events/activities you are organising this year.
We have received a number of requests for vouchers and would like to stress they will ONLY be available to local partners who register with us.
We are still in the process of establishing the framework and details of this competition, and would welcome any advice and suggestions you may have. Please email me at paul.matzATcarersuk.org or call 020 7566 7842.
Paul Matz
Carers Week Manager
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 1, 2008