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
http://www.hda.org.uk/charity/download.html#professionals 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!

Jean

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:

Behaviour
Risk
Diet,Swallowing and Communication
End of Life


If 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 at carestudy@.... 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 info@...


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