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Old 16-07-08, 06:30 PM   #1
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Default Standards of care

I've just found this posted by Jean E Miller. Thought it would be of interest if you don't already know about it.

The UK Huntington Disease Association has finally published is Huntington's Disease Standards of Care document, written for Social and Healthcare professionals but useful for anybody caring for someone with HD! I've been using sections of this document for the past year as I found it being as close to the old HDSA "Blue Book" on Caring for People with Huntington's Disease since that document was published!

You can go to this HDA link then go down to Social and Health Care Professionals and click on Standards of Care For People Affected by HD or click here: Standards Of Care For People Affected With HD - 1.9MB

Unfortunately, I can no longer find the link to the HTML version which had more sections then the published version. They're probably still in review.. If you're unable to download the document, let me know and I'll send it to you!


Developing the standards of care
The document aims to provide ‘person centred’ Standards of Care.‘Care’ for people with HD is very much lacking in evidence based research;where possible these Standards are evidence based,where this hasn’t been possible they rely on the experience based practice of those with extensive experience of caring for people with HD. These will be reviewed and updated and new topics added where it is deemed appropriate

Four main topics are covered in this first edition:

Diet,Swallowing and Communication
End of Life

f you provide daily care and support for a family member aged 18-65 with HD you are invited to take part in the study. For further details phone Diana Jackson on 0207-848-5582 or Dee Howley on 0207-848-5418, email the LTNC Care Research Team If you have any comments on these standards, or you would like to be involved in future updates/additions, please contact the HDA Head Office on 01512983298 or email
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