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Old 24-09-15, 02:41 PM   #8
Allan
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
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Default Services for Juvenile Huntington’s Disease - Update

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Hi everyone

Here’s the latest from Sheffield on the JHD Research Project: www.sheffieldchildrens.nhs.uk/our-services/huntingtons-disease/take-part-in-research.htm

My interests are in the following 3 items:

1. What do young people need?
2. What do they value?
3. Are there better ways of delivering services and providing care?

My view is that young people need less time at hospital or the GP’s Surgery – so I would strive for Domiciliary appointments in the home where the young person is more likely to be at ease with professionals. There are, of course, times when it is necessary to make the journey as well.

It is very obvious that most of the younger generations value the impact\influence of technology and this is probably one of the reasons why the Scottish HA are to be involved.

One service that we are looking into is Tele-Health\Care and the possibility of appointments by Skype, Facetime or NHS video systems for youngsters who are unable to travel or attend appointments at hospital for whatever reason.

Another aspect of JHD that needs to be reviewed is the young person's education - as it is known that there can be negative impacts on learning potential by the strong behavioural issues that often occur in this junior version of hd.

If anyone can give me any leads, pointers, ideas, practicalities, etc. that I can put to the team at the next meeting I would be most grateful.

Next meeting: deep into the darkest depths of a Northern Bleak Midwinter

www.facebook.com/Huntingtons-Disease-Association-180065095355823/timeline

Thank you - one and all.

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