View Full Version : Forum Members needed for Parliament Neurological Review

Robyn Copley-Hirst
3rd May 2011, 15:23
Hi Everyone,

This is an appeal to anyone who may wish to contribute to this National Audit Office investigation into the treatment received by people with MND. The MND Association has been asked if we can find seven individuals with MND who may wish to take part.

If you do wish to take part please email me at robyn.copleyhirst@mndassociation.org or Private Message me on the forum with your personal details:

Forum Username
Real Name
Preferred means of contact and the details of that which we can pass on (email/ phone number)
Background: age, type of MND, location etc.

You're welcome to respond on the forum but please don't put any private contact details online. If there are any questions please feel free to ask them and I'll get an answer to you as soon as possible. The interviews are set to take place later this month, so we'll be in touch very soon.

We only need seven people and will try and get a spread of people in terms of location, age etc. If you don't get selected for this we will definitely keep everyone in mind from this thread for the future and may come back to you to take part in something else. Below is some information on the review and what you can expect from it.

Best Regards,

__________________________________________________ __________________________
Information to support involvement of people with MND / carers

Key message:

Parliament’s ‘value for money’ watchdog, the National Audit Office (NAO), is investigating the treatment received by people with MND and other neurological conditions, to see whether it can be improved. We need people with MND to provide the perspective of those living with the disease.

Key ask:

We are looking for seven individuals from around the country, with a range of experiences of MND, to contribute to the review by taking part in a one-to-one interview with a researcher. This is likely to be in your own home, and with the use of communication aids if speech is a problem. The interviews will take place during May.

Background points:

• Parliament’s ‘value for money’ watchdog, the National Audit Office (NAO), is conducting a study on the treatment of progressive neurological conditions, in particular MND, multiple sclerosis and Parkinson’s disease

• The key question the study seeks to answer is: can the existing range of health and social care budgets be used more effectively to provide services for these conditions?

• The study is in response to dossiers submitted to the NAO initially by the MND Association and then with other charities, showing that services are often poorly planning and co-ordinated, resulting in reduced quality and higher cost care. Quality of care also varies across geographic locations

• We are pleased that this study is taking place, as MPs and Ministers pay attention to NAO findings: previous studies have led to commitments to change by Government and the NHS. We anticipate that this study will support the NHS and social services in ensuring they deliver more consistently and to a higher quality for all people with a progressive neurological condition

• The NAO want to get the views of people living with the disease and those who care for them. They will also review existing literature on treatment, analyse statistics from hospitals and other sources, and interview Department of Health officials and experts from the charities that support people with MND, MS and Parkinson’s

• We expect their findings to be published in the autumn

3rd May 2011, 16:19
Hi robyn i may well be interested, i will pm you later as im on my way out.

Robyn Copley-Hirst
3rd May 2011, 18:00
Thanks, Chris.

If you have any questions about it let me know :)


Robyn Copley-Hirst
6th May 2011, 13:09
Hi Everyone,

I've had a good response of volunteers for this. We believe we now have enough people to select from. I'll respond to everyone who put their name forward as soon as I hear anything.

Thanks to everyone who has volunteered! I'm closing the thread for new volunteers as we have enough volunteers, but do PM or email me if you have any further questions.


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