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 > Carers, things that have helped

Carers, things that have helped Share your experiences of caring, and pass on practical advice and helpful tips

Reply
 
Thread Tools Display Modes
Old 21-02-10, 10:33 PM   #1
DH
Approved Member
 
Join Date: Dec 2007
Posts: 2,184
Default Carers Week Survey

Message from Trish:

I have received the following mail inviting carers to be part of the Carers Week Survey. Details are also given about this years' Carers Week in June.

Please take time to complete the survey if you are a carer and feel free to pass on the details widely as possible. The more mentions we have of HD the better given we are fighting to be recognised alongside a whole load others out there. I was lucky enough to get to be 1 of the 100 carers invited to last years' Reception at the House of Commons. Yep... I was the only one with a HD link from the looks of it.

Interestingly one of the carers who gave a presentation spoke of caring for her husband who had Parkinson's Disease Dementia.

'A carer for her husband for the past 15 years, Valerie Rossiter talked about her experience of looking after someone with Parkinsonís Disease and Parkinsonís Disease Dementia.'

http://www.carersweek.org/newsroom_pr.asp?sub=207&id=8

I swear that from what she described she might as well have been describing looking after someone with HD. Her talk included being told by an official who was helping her complete the DLA form NOT to write her husband woke her up each night up to twelve times. She was told that didn't sound realistic and, if she wrote the facts on the form the person reading it would think she was lying about everything else as well!

Trishx


Dear Carer

I am writing to invite you to take part in the annual Carers Week survey. Thanks to your support this has become the largest survey of carers in the UK, and a crucial part of Carers Week, which takes place this year from 14-20 June.

Our theme for 2010 is - A life of my own - and our survey, which should only take a few minutes to complete, asks about what you (and other carers) miss out on, that most people in society take for granted, and what needs to be changed.

I do hope you have time to participate - every year carers tell us about their direct experience of caring and share personal stories of the stresses and strains; the ups and the downs of being a carer. This is a crucial part of our campaigning and activities during Carers Week, including our work with professionals and politicians, and indeed all decision-makers.

The survey can be found at https://www.surveymonkey.com/carersweek2010 - a secure address set up especially for this purpose. Please do pass this on to other carers you know, also anyone who does not have access to the internet can call us on 0845 241 2582 for a form.

Best wishes.

Paul Matz
Carers Week Manager

p.s. - for more information about Carers Week please visit http://www.carersweek.org
__________________
Fetchez la vache.
DH 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 03:39 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