Ataxia UK (West of Scotland branch)

A West of Scotland branch of Ataxia UK has recently been established, and a group of some 15 - 20 members has met on three occasions. Discussions so far have centred mainly on:

a) organisational matters (name, constitution, need for a logo, bank account, committee membership, roles and responsibilities etc).

b) exchange of information and views on services, other sources of help and support, unmet needs.

c) possibilities for raising funds.

The Group agreed at its last meeting (26th October 2003) to ask each member to complete a questionnaire to seek views about their needs, suggestions for service developments and improvements, about new forms of service provision and other opportunities, etc. A draft questionnaire was given to each member to think about and to comment on with suggestions for changes, additions and deletions at the next meeting on 7th December.

Contact us

Anne Green (chairperson)

Liz Griffin (secretary)

Marian Cairns (minute secretary)

Observations made at meeting of West of Scotland branch of Ataxia UK on 17 December 2003

• Appointments at Southern General Hospital for consultant review are often distressing, with insensitive questions sometimes asked (eg “are you working” – when I had to give up my job 10 years ago).
  Sometimes get “stressed out” with numerous questions I have answered before. Also having “to find out what the consultant has found by asking my GP".
  
• Would like to have access to gym, aromatherapy, reflexology, touch therapy, physiotherapy – for example as in the Multiple Sclerosis Therapy Centre.
  
• Need help with completing DLA (Disabled Living Allowance) form
  
• Need to know more about Community Care Assessments, how to access these and about possibilities for Direct Payments.
  
• Need to be able to access doctors and nurses who specialise in particular conditions – particularly for people who have rarer conditions.
  
• Some ‘therapies’ prescribed by non specialists are most inappropriate - for example suggesting that a person with ataxia might use a wobble-board.
  
• The questionnaire used at pain clinics is over-structured and intimidating.