Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > UK legal, insurance, employment, benefits, statutory services

UK legal, insurance, employment, benefits, statutory services Advice offered by HDA Moderators relates to current UK law or guidelines

Reply
 
Thread Tools Display Modes
Old 16-07-08, 06:30 PM   #1
myrna
Approved Member
 
myrna's Avatar
 
Join Date: Apr 2007
Location: Northants
Posts: 805
Send a message via Yahoo to myrna
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 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

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 atcarestudy@kcl.ac.uk. 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@hda.org.uk
__________________
Friendship doubles your joys, and divides your sorrows.
myrna is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 08:36 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA