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TSCommunity In your region In your region TSCommunity

In your region Wherever you live, your TSA’s Advisers What is a carer?

will offer help and advice on all things In Scotland
TSC. Here, they update you on what’s
The Carers Act 2016 took
In England happening where you are… effect in April. This means you
no longer need to be providing a ‘substantial amount
of care for someone on a regular basis’ to be defined as
Are you due a tax discount?
New council tax Save the date The TSA’s a carer in Scotland. Local authorities must now consider
Thank you! The NHS England public rates were Scottish if support should include breaks. They must also
consultation on funding introduced in England in April. If you are a carer, have Get establish and maintain an information and advice
everolimus for TSC related large equipment at home to help with a disability or Together 2018 will take place on service for carers.
epilepsy in England has now closed. A huge thank receive certain benefits, you may be eligible for a Saturday 25 August in the Clinical Genetics Building To find out more, go to www.gov.scotand search for
you to everyone who responded. discount. Each local authority administers its own of Glasgow’s Queen Elizabeth Hospital. All affected Carers Scotland Act 2016.
by TSC in Scotland are very welcome to attend this
To find out more, go to page 18, scheme so discounts vary from area to area.
free event. If you’re a young carer, go to young.scot and search for
www.tuberous-sclerosis.orgor our social media To find out if you can get a discount, contact your local Carers Act.
sites (details on page 1) office. Details will be on your council tax bill. Speakers will include the TSA’s Head of Research
Strategy Dr Chris Kingswood and Family Fund’s
Salena Begley MBE.
On the map
New TS clinic in Newcastle To find out more, go to www.tuberous-
A helping hand sclerosis.orgor call TSA Advisor Lynn Shields
Promoting a More
Since January Inclusive Society (PAMIS)
A number of charities have recently published
2018 the works with people with profound and multiple
some useful guides:
Royal Victoria learning disabilities in Scotland. Its website includes
Infirmary in The Helpful Guide for Families with Disabled Enquire here for learning rights a map of 167 Changing Places toilets, vital for when
Newcastle Childrenfrom Contact (formerly Contact a Family) you are out and about.
has been
This book is jam-packed with useful Enquire is the Scottish advice service for additional To find out more, go to www.pamis.org
offering a 3-
information on a huge range of support for learning. Its mission is to:
monthly
topics, including diagnosis, • raise awareness of children’s rights to extra support
multi-
caring for yourself, education, NEWSFLASH!!!
speciality clinic in school
working, childcare, holidays and
for patients and • help families and schools work together to ensure
financial help. Turn to page 18 to read about the
their family members children get the support they need Scottish Medicines Consortium
with TSC. This clinic provides expertise in adult and To get a copy, go to • provide advice to children and young people who decision on everolimus for epilepsy
paediatric nephrology, neurology and clinical www.contact.org.ukor call might be struggling in school.
genetics and involves specialists in respiratory, 0808 808 3555
dermatology, cardiology and paediatric neurology Enquire’s easy-to-read parents’ guide explains you
as required. Cerebra’s parent guides and your child’s rights, local authorities’ duties, what Social security changes
to expect at meetings and much more. The Scottish
Consultant nephrologist, Professor John Sayer, Cerebra supports families and carers who have a government will
heads this new clinic, working with consultant child with a brain condition. As part of its work, it To find out more, go to take over responsibility for 11 devolved benefits by
paediatric nephrologist Dr Yincent Tse, neurologist produces parent guides, including those specifically www.enquire.org.uk/publicationsor call 2020, including Carer's Allowance and Disability
Dr Rhys Thomas and clinical geneticist Dr Alex for people living in England. These 0345 123 2303 Benefits. It can also make changes to the way universal
Henderson. include one about education, health credit is paid.
and care (EHC) plans, transition to
More information on our website and for a referral
adulthood and carers’ assessments.
please contact TSA Adviser Christine Beal (contact
details on the back cover). To find out more, go to To download a carers’ rights factsheet, go to www.carersuk.org or to watch a
www.cerebra.org.ukand search for video update on plans for social security in Scotland, go to
EHC plans or call 0800 328 1159 www.youtube.com/watch?v=XWEHMS8kG-8&feature=youtu.be

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