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Justine Barkas

Specialist Huntington's Disease Adviser for the SW
What is Huntington's Disease

Justine Barkas

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Specialist Huntington's Disease Adviser for the SW

I am the new adviser for the Huntington's Disease Association for Devon, Cornwall, The Isles of Scilly & Jersey. 
 
My role as the HD Adviser for the area is to:
 
Provide advice, emotional support & a listening ear for anyone affected by Huntington's. (We understand that whole families may need support).
 
Help coordinate support with medical, health and social care professionals.
 
Make referrals into specialist Huntington's disease clinics.
 
Advocate for the person with Huntington's disease to get the best support.
 
Educate medical, health and social care professionals, meaning better diagnosis and on-going care.
 
Explain what branch support and carers groups are available (face to face & online) which I also help to host or will attend.
 
Provide information resources on symptoms and how to manage them.
Connect younger family members with our Youth Support Worker, Jack who covers the SW.
 
Provide information about planning for the future and support for sensitive end of life care.
 
Our website is a very useful resource with a lot of advice, information and webinars : www.hda.org.uk, there is also a message board on the website where people can post questions (anonymously) and receive peer support. 
 
 
Please do get in contact if you or anyone in your family is affected by HD and needs support.
 
Email: justine.barkas@hda.org.uk
 
Tel: 07749 493 566
 
Helpline: 0151 331 5444
I am the new adviser for the Huntington's Disease Association for Devon, Cornwall, The Isles of Scilly & Jersey.    My role as the HD Adviser for the area is to:   Provide advice, emotional support & a listening ear for anyone affected by Huntington's. (We understand that whole families may need support).   Help coordinate support with medical, health and social care professionals.   Make referrals into specialist Huntington's disease...

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Listing - Huntington's Disease Support

Justine Barkas
  • All Cornwall
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Find advice, emotional support & talk to me about how you're affected by Huntington's. Specialist Huntington's Disease Advisers Our specialist ... Read more
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  • 635 days remaining
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