New Study into Quality of life and Sleep in Rheumatoid Arthritis - can you help?

[Kim-NRAS]

NRAS would like to make you aware of a new study being devised by Vicky Short from the University of Manchester, funded by ARUK, looking into the quality of life and sleep in people living with RA.

Do you have Rheumatoid Arthritis? Are you aged 18 years or over? If yes, we would like your help to design a study that will investigate how sleep affects people’s quality of life in those diagnosed with Rheumatoid Arthritis.

What would we ask you to do?

1. Consent to take part

2. Attend a two hour group discussion, at 6pm on 9th November 2016, giving your views on:

what information on sleep, pain and how you are feeling should be collected.

how often this information should be collected.

what is the best way to collect this information.

Meeting: Focus group

Group discussion on the above areas.

Two hours duration.

Refreshments provided.

Location: Nowgen Centre, 29 Grafton Street, Manchester, M13 9WU.

When: 6pm, Wednesday 9th November 2016.

For more information about these sessions, or to confirm your attendance, please contact Vicky Short: e-mail: [e-mail] or telephone: [phone].

[Philip]

I can't travel unfortunately because I now have dementia also. I'd like to wish you very good luck with this.

[Gretchy]

Would have liked to take part but sadly Manchester is a long way away.

[Moomin8]

Too far for me unfortunately but good luck.

[Mandalou]

What a valuable study, so sorry Manchester is too far for me.

Mx

[Matalow]

Ask Vicky Short to read this site, it will give her a good start for her study.

I wish her success but unfotunately it's about a day's drive for me,

Regards Mike

[Cagsie]

As above, sounds like a great study, long overdue. I too could not travel that far but know how my sleep has been affected by my RA. Hope plenty of people are able to sign up. Good luck x

[Tillie20]

I would love to attend but I live in London x

[helenlw7]

I sounds like a really good study and I would have loved to take part but an evening meeting isn't any good for me. I would have been prepared to have travelled if it had been during the day, say on a Saturday.

[Lulumae]

Sounds like it is going to be a really worthwhile study, would like to take part, but too far for me as I live in Middlesex. Good luck and hope many others will be able to attend.

[calamityjane1971]

I won't be able to attend, but the time of 6pm will mean people won't be able to attend. The nature of RA for me means that 6pm, I'm normally way too fatigued by then. I'm sure it's the same for others with RA. Just a thought.

[A-Faye]

Hi Vicky.I like in USA and read your post. We are about to move to government run healthcare in this country after Clinton wins the election. I have grave concerns as I read this site where your citizens have long wait times and have limited access to medical doctors.

It is obvious to me that sleep is EXTREMELY important for us who have RA- it's common sense. Your study should be focused on how to help people sleep not the importance of it. These poor people (including myself) hurt all the time, and that means during sleep. I am surprised that your study on the importance of sleep for people with RA got funded. I think that grant money should be used for a better purpose such as pain control to prolong sleep.

[Simba1992 in reply to A-Faye]

Couldn't agree with you more. Since funding for studies is so very limited you would wish it would be used on research that could make a difference in the lives of RA patients.

[sandraw21 in reply to A-Faye]

Depends what you mean by access to medical doctors. We all have GP's who refer us in the first instance to a consultant in the hospital. Yes there is a waiting list, but it's really not that long.

GP's can send us for various things like x rays, or some kind of imaging. Blood tests are done at the local doctors surgery.

[Kim-NRAS NRAS]

Dear All

As the people who are running the study do not have access to this site to see your replies, please may I encourage you to email Vicky Short directly as requested in the original post to [e-mail].

Please also note, in case it wasn't clear before that this is not an NRAS funded study but one being run through the University of Manchester.

Best wishes

Kim

[sandraw21]

Sorry, too far.. I'm in Cornwall. Doing this study should be done in several locations, particularly as the people you want to see are all struggling with mobility issues

[Gillian1163]

Willing - but Manchester too far away

[AllyWelshDragon]

I would have loved to take part, especially as my job is working in clinical trials and R&D for our local health board in Wales. Sadly I can't take time out to go to Manchester but would happily take part online if that is ever a future option.

Ally x