Carers’ Conference: ‘We can’t wait for next year!’

SHA Chief Executive John Eden welcomes families to the 2019 Carers’ Conference

Families from across Scotland came together at the annual Scottish Huntington’s Association Carers’ Conference to explore ways to build the resilience and skills needed to provide the best support for loved ones with Huntington’s disease

The focus of this year’s event was to provide a ‘tookit’ of resources and information, as well as offering the opportunity for families to meet up with friends old and new from the HD community.

Lynn Garrett, Assistant Operations Manager (Clinical Adult) at SHA, said: “We wanted to support carers by giving them more of the skills, coping strategies and resilience that they need to deal with a variety of situations.

“Caring for a loved one with HD is tough and can be really hard going, so it was also important to offer the opportunity for carers to take a bit of time out and remember it’s vital that they look after themselves too.

“It was great to bring so many people together, to support them to connect with one another and share their experiences. The speakers were excellent, and there were fun activities too, including Zumba, yoga and a Hounds of Huntington’s Race Night with lots of prizes.

“We’ve already had excellent feedback and I’m sure everyone was able to take something positive away from the conference.”

Sixty carers, along with SHA staff, volunteers and trustees SHA attended the 2019 conference, which took place at Balbirnie House Hotel, Glenrothes in Fife.

The opening addresses were delivered by SHA Chief Executive John Eden and Chair of the Edinburgh Lothian Branch Dina De Sousa. Further presentations included

  • Choosing A Care Home by David McIlwaine, carer
  • Advocacy by Wilson McDuff of Fife Advocacy Service;
  • Huntington’s Framework by Alistair Haw of SHA
  • You Can’t Stop The Waves by Lesley Howells of Maggie’s Centre
  • An update on the latest research by Jillian Foster, SHA HD Specialist
  • Carers’ Support Assessment by Clare Maddison, from Fife social work department.


Margaret Moncrieff, from Renfrewshire, whose sister has HD, said: “It was a wonderful conference. I found it incredibly positive, especially hearing about all the latest research and advances that are taking place. I’m looking forward to next year’s event already!”


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