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Influence services for people with neurological conditions - Carers UK Forum

Influence services for people with neurological conditions

Take part in research or give your opinion in a survey.
Do you spend several hours a day caring for an adult aged 18-65 years old with a long term neurological condition?

Would you like to influence change in services that allow carers to take a break?

If the answer to both of these questions is "yes" then we would like to hear from you. We are a team at King's College London and have been commissioned by the Department of Health to find out about carers need for and experience of replacement care services (also known as respite care). We would like carers to complete a survey to help us do this. If you are interested further details are available on our website at: http://www.kcl.ac.uk/schools/medicine/d ... arers.html

Or else please contact David Williams on 020-7848-5418 or at kclcarestudy@kcl.ac.uk or write to (there is no need to use a stamp):

Freepost RRLJ-JXEA-HYAS,
LTNC Care Study,
King’s College London
Palliative Care, Policy, and Rehabilitation,
Weston Education Centre,
Cutcombe Road,
London, SE5 9RJ
Do you spend several hours a day caring for an adult aged 18-65 years old with a long term neurological condition?

Would you like to influence change in services that allow carers to take a break?

If the answer to both of these questions is "yes" then we would like to hear from you. We are a team at King's College London and have been commissioned by the Department of Health to find out about carers need for and experience of replacement care services (also known as respite care). We would like carers to complete a survey to help us do this. If you are interested further details are available on our website at: http://www.kcl.ac.uk/schools/medicine/d ... arers.html

Or else please contact David Williams on 020-7848-5418 or at kclcarestudy@kcl.ac.uk or write to (there is no need to use a stamp):

Freepost RRLJ-JXEA-HYAS,
LTNC Care Study,
King’s College London
Palliative Care, Policy, and Rehabilitation,
Weston Education Centre,
Cutcombe Road,
London, SE5 9RJ



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I seem to remember this same study some time last year, and which I too participated in. What's really annoying is that there's never an acknowledgement or an update of what the conclusions/results are. This common courtesy would enable us to feel that the time spent was being helpful and of use to policy formulation in the future.
Well said Sandie, there is very little feedback for making the time to complete these.
My son is undiagnosed, as are about a third of neurological conditions. Complex care needs, multiple physical and learning disabilities. You might like to follow my blog at http://nedluddcarer.blogspot.com/ to get a feel for the sort of issues involved.
Hi Sandie and Myrtle,

Thank you very much for taking part in the survey. You are right, this survey has been running for some time now, and I am sorry for not feeding back to you.

The reason is that I am in touch with so many carers (I am running a couple of other projects besides this one) that it is not possible to get back to each carer individually.

However, the report is due to be finalised for the Dept of Health in Dec. At this point I will also also produce a shorter report that will be sent to all of the different organisations that have helped us publicise the survey, and they will then be able to display this in the same way they displayed this notice so that as many carers as possible will see the outcomes of the survey (and you will be able to see the more detailed findings on the website of the Research Initative for Long Term Neurological Conditions http://www.ltnc.org.uk/)

I hope this helps, and if anybody would like any more info about the survey (even if you do not want to take part) please feel free to contact me directly at the number or email address provided in the original post. I do not check this forum often so it will be much quicker to contact me directly.

Best wishes,
David
Dear all,

just a reminder that this survey will close in the next month or so so if you would like to take part please contact me as soon as possible.

Best wishes,
David