TOURETTE SCOTLAND BULLETIN BOARD NUMBER TWENTY THREE

 

'THE VOICE FOR TS IN SCOTLAND'

 

Our Network of Support Groups will be meeting regularly throughout Scotland and for updates on what's happening, see our website or email info@tourettescotland.org and see our Facebook and Twitter pages.  We will give you a warm welcome.  Thank you to all our suppot group leaders and workers, for the great job that you continue to do for people living with TS.  Training?  We provide an awareness service, see our website for details.

Tourette Scotland is the national support charity providing services for people and families living with TS in Scotland; look out for our official logo at local meetings or events and be sure to seek us out!

Our 'Gathering' in Perth on 25th May was well attended and the events included workshops, activities for youngsters, and the usual meeting up of families, friends and supporters.  Thank you all for coming along, it was good to see you all and welcome new faces.  See you again soon!

You may have heard about the death of our friend and colleague, Dr Dorothy Taylor.  The tributes we received said much about the impact she had on our lives, and the important contribution that she made to our work.  We continue our efforts to raise awareness, change perceptions and increase the quality of life for those with TS, with the thought that we are doing our best to carry on the ethos of Dorothy.

Did you know that it's European Tourette Syndrome Day on 7th June?  A good chance to raise awareness about TS and let others know what TS is, and how it can be supported.  LauraB of Teens4TS is collecting diagrams using the Netherlands TS logo, of what TS means to you.  See her blog page on http://www.njcts.org/teens4ts/please-help-out-my-tourette-syndrome-awareness-efforts/ she says: "I'm collecting as many versions of Tourette's as I can, using the logo of the Dutch TSA (which is severl blank circles).  Can you help me with this? What you need to do is take the large and small circles as seen on the website, and fill them the way TS is for you - the bit stuff in the big circles, and the small stuff in the small circles.  For everyone, Tourette is different, so for everyone the circles are different! As you can see in the example on my blog, you can add circles if you want to, or leave them the way it is."  You can send your version of TS to her via email kids@tourette.nl

Lauren's Firewalk: Lauren Strachan is fundraising for Tourette Scotland by doing a sponsored Firewalk.  Her JustGiving page is: https://www.justgiving.com/Lauren-Strachan we gladly support her in her efforts for us, and as she says she 'likes a challenge' we hope she enjoys it too!

The strongest link - working together to provide additional support:

Enquire have published a report on their 14th annual conference which explored partnership working in providing additional support for learning to children and young people.  This theme was chosen given the recent publication of the Scottish Government's long term plan for Additional Support for Learning.  The plan outlined a commitment, at national level, to improving the experiences and support available to children and young people with additional support needs and their families.  Read more: http://enquire.org.uk/publications/conference-reports/the-strongest-link-working-together-to-provide-additional-support Enquire do a great job for professionals and families alike, and they provide resources and advice on a range of subjects, include meetings and participation in your child's education.  Tourette Scotland works with Enquire to provide connections to their services and we hold their information in our national office as part of our library.  http://enquire.org.uk or http://enquire.org.uk/publications/parents-guide

Shared Care Scotland would like to draw your attention to an important piece of Scottish Government consultation which is currently underway.  The 12 week consultation is on the guidance, regulations, legal duties and powers which will accompany the Social Care (Self-directed Support) Act 2013.  The Act, due to be implemented in 2014, contains new laws which aim todeliver more personalised, flexible forms of social care support, and the accompanying regulations will be key to ensuring the benefits promised by the Act are delivered throughout Scotland.  The Draft Carers (Waiving Charges for Support) (Scotland) Regulations will be of particular interest to unpaid carers, and to those organisations providing support and services to unpaid carers - including Tourette Scotland.  To help gather views on the draft regulations to waive charges for carer support, the National Carer Organisations have developed a short online questionnaire.  We would be very grateful if you could take a few minutes to complete this.  The results of the questionnaire will be fed back to the Scottish Government.  You can complete the survey by going to the link here: surveymonkey.com/s/G7S3LTC. The closing date for the consultation is the 10th July.  Thank you.

We work closely with other agencies and are in contact with our fellow support organisations and we will geographically cross refer people who are living with TS.

Scotland: Tourette Scotland Help@tourettescotland.org www.tourettescotland.org  0300 11 11 462

Northern Ireland, England and Wales: Tourettes  Action   http://www.tourettes-action.org.uk/

Southern Ireland: TSI Ireland   http://www.tsireland.ie/aboutus1.html

Update on DLA to PIP timetable:

10 June 2013: New claims for PIP will start in Scotland.  There will be no new claims for DLA for people who are aged 16 to 64 as at 10th June.

7 October 2013: Existing DLA claimants who report a change in their DLA care or mobility needs will be asked to claim PIP.  Claimants with fixed term DLA awards due to expire after the end of February 2014 will also be asked to claim PIP.  Young people turning age 16 will also need to claim PIP.

October 2015 and 2018: All the remaining eligible claimants in receipt of a DLA award will be invited to make a claim for PIP.  The DWP plan to have contacted everyone by 2018.

Quote of the week, courtesy of the Scottish Independent Advocacy Alliance: A reference to the perceived changes in when one has a disability or not, according to the benefit assessors under the new regime - "In Glasgow the Assessment Centre is locally known as 'Lourdes' as many go in sick but come out deemed 'fit for work'."!

Are you someone who hasn't been in touch with Tourette Scotland for a long time?  We will continue to keep in touch, ad keep you on our database, and will always be pleased to hear from you.  We can be contacted anytime:

Contact us: Telephone: 01738 646742 or on our Helpline on 0300 11 11 462.  Email info@tourettescotland.org  help@tourettescotland.org

Find us: www.tourettescotland.org  www.http://tourettescotland.ning.com  or Tourette Scotland on Facebook.

Want to donate and help us maintain our support services? You can do so via our website (follow the Workwithus link) or by text by sending message to: 70070  and then entering TOSC46 space £??  You will get a text receipt by return.  Remember to add Gift Aid, either via the phone or via the internet.

Thank you!