tsa scottish newsletter december 2014
DESCRIPTION
ÂTRANSCRIPT
December 2014
Scottish Get TogetherSaturday 4thOctober
Huge thanks to everyone who camealong and joined in with all the fun,and the serious stuff, at our GetTogether in October at TheLighthouse, Glasgow. Sharon Millerfrom www.joyworks.co.uk started theday off with lots of laughter, which weknow from feedback many thoroughlyenjoyed, and we have the pictures!
Dr Chris Kingswood, Head of TSAResearch Strategy, Alison Cooper,Head of TSA Research, and Dr AnuragSaxena also came along and providedeveryone with a welcome update onthe latest research in the TSC worldincluding information regarding theTRON Study.
For further information on the Studyplease see:medicine.cardiff.ac.uk/tron-study.Huge thanks also goes to our amazingvolunteer fundraising sisters, VickyMason and Margaret Kelly, and toeveryone for their generous donations.
As ever the feedback received isimmensely helpful for planning futureevents. Please don’t hesitate to get intouch with TSC Adviser Lynn Shieldsemail: [email protected] tel 01236 608257 if youhave any further suggestions.
Scottishnewsletter
The AllianceOn Wednesday 3 December, the TSA wererepresented as the ALLIANCE held thelatest in its series of joint seminars withthe Association of the BritishPharmaceutical Industry (ABPI) Scotland,this time on the subject of rare conditions.
Delegates heard from a range of speakerswho all generated lively discussion and arange of questions about opportunities tofurther improve support and treatment for people living with rare conditions. Delegates were givenan overview of a number of recent policy developments to improve support for people with rareconditions, including Scotland’s Rare Disease Implementation Plan, the New Medicines Fund andchanges to the Scottish Medicines Consortium process to allow greater involvement of people livingwith rare conditions.
A number of speakers explained that the nature of rare conditions meant that joint working betweenpatient organisations and the pharmaceutical industry was important. Andrew Hollingsworth of ABPIUK gave an insight into work being undertaken in conjunction with National Voices to develop anadvisory, practical ‘how to’ guide for patient groups/health charities and pharmaceutical companiesto use when working in collaboration.
When a medicine is first licensed for use in clinical practice, the numbers of patients that have beenexposed is generally relatively small, compared to the number that will eventually receive it. This iseven more of an issue in relation to rare diseases. Relatively uncommon reactions may therefore nothave been detected and it is primarily for this reason that the Yellow Card Centre (Scotland centrefor collecting information on suspected adverse drug reactions (ADRs) to medicines) exists.
As of 2008, members of the public can report problems directly, and Melinda Cuthbert from theYellow Card Centre welcomed any potential opportunities to work with third sector organisations toraise awareness of the scheme. Further information can be foundat http://www.yccscotland.scot.nhs.uk/
The TSA would also be really interested to hear of any issues our members face, including access tonew medicines. Please contact TSC Adviser Lynn Shields.email [email protected] or tel 01236 608257.
New factsheets from Carers Scotland Assessments: your guide to getting helpBrand new factsheet outlines how carers can get help in Scotland. The factsheetincludes detailed information about how assessments are carried out and howcarers can access practical support.
Carers Rights Guide 2014/15 Looking after someoneEssential guide for carers, outlining their rights, the financial and practical support available andwhere to go for help. For the second year Carers Scotland have produced different versions for eachnation so all the information is tailored to carers in Scotland.
Copies can be downloaded from http://www.carersuk.org/scotland
Please contact TSC Adviser Lynn Shields. email [email protected] ortel 01236 608257. If you have any issues accessing Carer support
www.tuberous-sclerosis.org
Time To Be Heard Launch
The Carers Trust are launching their Time To Be Heard for young adultcarers Scotland campaign initiative at Our Dynamic Earth, Holyrood Road,Edinburgh, EH8 8AS on Thursday 29 January 2015, 9.45-12.30pm.
At the event, there will be discussion about the results of the research andCarers Trust will also launch its new publication which sets out key recommendations for national andlocal government, and health and education providers on how to better support young adult carers inScotland.
They are keen that young adult carers also attend the event, as a range of decision makers have beeninvited to attend and this is a real opportunity for young adult carers to be heard.
An online registration form is available at https://carerstrust.wufoo.com/forms/time-to-be-heard-launch-registration/
If any young adult carers are able to attend the launch, please RSVP by Monday 19 January 2015 [email protected] or if you would like more information, please call: Paul Traynor, Policy andCampaigns Officer (Young Adult Carers) on 0141-285-7929.
Expansion of FreeChildcare forFamilies
Tens of thousands of parents and carers acrossScotland have started benefiting from extrahours of free early learning and childcare everyweek.
The Scottish Government has committed at least£280 million over the next two years to expandannual funded provision for 3 and 4-year-olds to600 hours (almost 16 hours a week) and to extendthis to the most disadvantaged 2-year-olds.
For full details please visit the ScottishGovernment’s press releasehttp://news.scotland.gov.uk/News/Expansion-in-free-childcare-for-families-f97.aspx
Parents and carers who believe their child maybe eligible for funded provision this year,whether in the first term or later, are encouragedto contact their local authority.
Further information, including advice about localprovision, are available on the Scottish Familieswebsite (scottishfamilies.gov.uk).
‘Go for a Grant’.
Turn2us has recently launched a grantscampaign, and helps people in financial needgain access to welfare benefits, charitablegrants and other financial help – online, byphone and face-to-face through their partnerorganisations.
The Turn2us free, accessible website -www.turn2us.org.uk is designed to help peopleaccess the money available to them .
The website has a number of tools to make theprocess simpler, including a Grants Search,Benefits Calculator and ‘find an adviser’ tool tohelp locate someone to speak to.
www.tuberous-sclerosis.org
Autism-FriendlyPerformanceJack & the Beanstalk3rd January 2015The Burton TheatreMusselburgh
The Burton specialises in producingfun and interactive traditionalpantomimes that are suitable for all thefamily, from 4 to 104!
The 2.00pm performance, 3rd Januaryis an autism friendly performancewhere adjustments will be made tocreate a friendly and supportiveatmosphere for people with autism andtheir families. The auditorium lightingwill never fully go out There will not beany strobe lighting reduced highestlevel of sound for the show, especiallyfor loud sound effects, some specialeffects (e.g. fireworks) will be cut.
The theatre’s foyer will havedesignated quiet and activity areas,should anyone want to leave their seatsduring the performance. For moredetails of prices and how to bookplease call 0131 665 2240
Looking for some family entertainment over the Festive Season?
Relaxed PerformancePeter Pan Kings TheatreGlasgow 7th January 2015
There will be a relaxed performanceof Peter Pan on Wednesday 7 Jan2015 at 11am. This performance isdesigned to create a supportive andfriendly welcome for people with alearning disability, autism spectrumcondition or sensory andcommunication disorder.
There is a relaxed attitude to noiseand movement around theauditorium and some small changesmade to the lighting and soundeffects. With all the traditional familyfun and games, dazzling costumesand more than a sprinkle of fairydust, Peter Pan will have audiencesof all ages hooked!
The theatre will have designatedquiet and activity areas forcustomers to use at any time shouldyou wish to leave your seats duringthe performance. For moreinformation please call CreativeLearning on 0141 240 1309/10.
Disney Frozen-FREE Screening-GlasgowBurrell Collection Massively popular Disney animation Frozenwill be thelatest Autism-Friendly Film Screening at Glasgow's BurrellCollection. Family film screenings for visitors who maystruggle with regular cinema experiences. Brighter lights,lower than normal volume. All screenings are FREE andchildren must be accompanied by and adult.
All films start at 2pm, 20th Dec, 25th Jan & 22nd Feb . Formore information please call 0141 287 2564 or [email protected]
Thanks to Everyone for the amazing support during 2014.Wishing you all a very Merry Christmas and a Peaceful New Year
www.tuberous-sclerosis.org
This newsletter attempts to report all items of interest relating to Tuberous Sclerosis. We do not knowingly reproduceinaccurate or libellous material. We do not promote or recommend any treatments, therapy or institutions or
professional systems. Individuals and organisations referred to by us do not necessarily endorse this reference.Tuberous Sclerosis Association is a Company Limited by Guarantee. Registered in England and Wales No 2900107
English Registered Charity No 1039549 Scottish Registered Charity No SC042780 www.tuberous-sclerosis.org
www.tuberous-sclerosis.org