England: Do this neurological patient survey, deadline Sept 30th 2016

[Sasha]

Patient experience survey 2016
The Neurological Alliance has launched its second neurological patient experience survey. Please follow this link to take the survey.

The survey aims to collect vital information about the experiences of people affected by neurological conditions, including the quality of the treatment, care and support that they receive. It will help us to understand how much progress has been made in improving neurological services, and which areas to focus on for improvement.

The survey opened on June 30th and will remain open until September 30th. We welcome responses from anyone with a neurological condition living in England.

The results of our first patient experience survey, conducted in 2014, were published in 2015 as The Invisible Patients: Revealing the state of neurology services.

The survey data we collected has been invaluable in providing evidence and examples to support a wide range of campaigning activity on behalf of people living with neurological conditions.

We hope that this year’s survey will produce an even richer source of data which will set out a comprehensive picture of your experience of neurological services and make recommendations about how care can be improved.

This is without doubt a timely and exciting opportunity for the neurological community.

We need your feedback to be able to make the strongest case to decision makers about how services need to change. We really value your support and look forward to sharing our findings with you over the coming months.

An FAQ document on the survey is available here. If you would like to help publicise the survey, a printable flyer with QR code is available here.

Note on data protection
All survey responses will be kept completely anonymous. Where the survey asks for postcode information, this is in order to identify the local area you live in for comparison purposes and to understand local variations.

This data will be privately shared with Public Health England in order to map each response to your local area. After this is completed, all postcode information will be permanently deleted.

Your postcode information will not be published or shared with anyone else.

All publicly shared information will be fully anonymised. We have provided an option in the survey for people to provide their contact details if they wish.

If you chose to provide contact details, they will not be published or shared with anyone else. We will only contact you if you state in the survey that you are happy to be contacted, and we will not share this information with anyone.

If you choose to be contacted and provide any further information, it will not be shared or published without your explicit consent.

http://www.neural.org.uk/campaignin...s/patient-survey-and-commissioning-audit-2016

 

[JohnCB]

Survey filled in. A little long but not difficult. A bit emotional as it reminds me how little care I get.

 

[AndyPR]

Lol, what are these Neurological Specialists that they refer to?? I mean I've heard they exist but having never seen a specialist of any sort I've always assumed they are mythical...

 

[alkt]

i finally asked m gp for an appointment with a neurologist last summer he made an appointment with liverpool s so called me clinic where the staff were brainwashed into treating it as a wrongful illness syndrome their paper regarding how to treat patients is on this site somewhere .i phoned the clinic and asked them to send me an updated patient info leaflet the secretary point blank refused .so i cancelled my appointment in the best interest of their wellbeing since i have very little patience for idiots.

 

[Sasha]

i finally asked m gp for an appointment with a neurologist last summer he made an appointment with liverpool s so called me clinic where the staff were brainwashed into treating it as a wrongful illness syndrome their paper regarding how to treat patients is on this site somewhere .i phoned the clinic and asked them to send me an updated patient info leaflet the secretary point blank refused .so i cancelled my appointment in the best interest of their wellbeing since i have very little patience for idiots.

I hope you've filled in the questionnaire!

 

[alkt]

I hope you've filled in the questionnaire!

yes although the questions did not really give enough multiple choice answers. they should have also asked if your doctor showed any personal knowledge or even an interest other than fobbing you off for years on end with painkillers.although that is better than no palliative care whatsoever.

 

[Sasha]

yes although the questions did not really give enough multiple choice answers. they should have also asked if your doctor showed any personal knowledge or even an interest other than fobbing you off for years on end with painkillers.although that is better than no palliative care whatsoever.

If memory serves, there are boxes for open-ended answers and I used the last one for a bit of an essay on what's wrong with the NHS when it comes to ME/CFS.

Things are so screwed up with the NHS approach to ME/CFS that any questionnaire aimed at illnesses that are treated normally is not going to have appropriate forced-choice questions.

Ah well! It's good that they're asking - we just have to use those open-ended, "is there anything else you want to say" boxes to get our views across.