Priory Group Develops Huntington's Disease Professional Forum
30/11/09
The Priory Group, which provides care for Huntington's Disease sufferers, is bringing health professionals together through an innovative forum which benefits patients of the hereditary neurological disorder.
Seventeen specialists from across the country are using the forum as of a way of sharing advice and best practice for the disease, which affects around 8,000 people in the UK.
The forum, which was established in November 2008, is being used as a support tool for dealing with Huntington's patients, who often have very individual and rapidly changing needs.
Due to the relatively small number of Huntington's sufferers, patients are often spread far and wide, making it difficult for busy experts to meet in one place and discuss issues around the disease.
The 'virtual' forum means that these experts can call on the support of their peers around the country, quickly, through an email.
Professionals can confidentially discuss case studies, ask for advice on certain topics, or identify referrals when a patient needs a different form of specialist care.
Examples of best practice are also encouraged, as shown by one member who contacted the group to make them aware of a specific type of bed that had been successfully used in the care of a patient.
Claudette Neville, Priory Group Huntington's Disease Professional Forum co-ordinator, said: "Huntington's Disease can develop at any stage of life and because of this every patient has different and often challenging needs.
"Our members have a wealth of experience in dealing with Huntington's patients; we have representatives from the Huntington's Association and a nurse specialist in the disease.
"As with all of the Priory's services, the patient is at the heart, and this forum is helping to enhance the quality of care and maximise the quality of life for Huntington's sufferers. I would urge anyone working within the field to contact me and make use of our support network."
Anyone wanting to become part of the forum is asked to email claudetteneville@priorygroup.com
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