Thanks
@Peter T. As Trish said
I did the survey. I think it's well designed and the questions are clear. I hope it will provide useful information, and, more importantly, action at government level and NHS level, not just charity level.
As Trish says, this is a great opportunity for pwME in the UK to provide accurate and relevant information.
The sections are:
You and ME: 1-5, demographics, 6-13 your ME,such as when, why, how bad...
Impacts of ME: 14-18 see above post, views of others, reduction or loss of: independence, trust in NHS/DWP
Access to Healthcare: 19-22, home visits, barriers, does having ME affect the care you receive from the NHS
Experience of NHS healthcare: 23-31 Is ME understood, are you supported, experience of disbelief...
Social care: 32-38
The cost of ME: 39-46, work, benefits, finances, household spending...
Other than box ticking a few questions have an "other" option, which can generall y answered with a short sentence if you want to expand.
There is also an open question at the end of each section "Is there anything elase you would like to tell us about...
There is a generous word count, even my essays didn't reach them! To be clear my daughter and I went through a printed out version. I input her responses and then, where I wanted to add something I titled this Parent's view.
The final
Further Information section: 47-51 covers your views on AfME -what they do well and wher they can improve, would you like to be contacted to be told about research, PPI, APPG, receive their newsletter, provide more detail on your answers.
www.cookiestatus.com
