The Neurological Alliance: [UK] General Election 2019, Our Neuro Pledge 2019

[Andy]

Ahead of the 2019 General Election, we’re asking parliamentary candidates – the people who want to become MPs – to take the #NeuroPledge2019. It commits them to campaigning for improvements for people with neurological conditions, if they become an MP.

We’ve worked with Epilepsy Action – one of our member organisations – in developing the pledge. It draws on the findings of our patient experience survey about the services and supports that still aren’t good enough, and make living with a neurological condition harder than it should be.

https://www.neural.org.uk/general-election-2019/

 

[ladycatlover]

No ME charities are listed as members.

 

[Dx Revision Watch]

The Neurological Alliance is listed as one of Forward-ME's "linked organisations":

http://www.forward-me.org.uk/LinkedOrganisations.htm

 

[rvallee]

No ME charities are listed as members.

All diseases are equal, some are more equal than others.

 

[Andy]

No ME charities are listed as members.

Well, this is where they explain the different membership options, all we have to do is convince our ME charity of choice to join up, https://www.neural.org.uk/membership-subscriptions/

 

[ladycatlover]

Well, this is where they explain the different membership options, all we have to do is convince our ME charity of choice to join up, https://www.neural.org.uk/membership-subscriptions/

I think most of our ME Charities aren't rich enough to do that? AfME maybe but I'm not keen on them being members anyway unless they really have changed their leopard spots.

Interesting to see their other list - the Corporate Supporters!

 

[ladycatlover]

The Neurological Alliance is listed as one of Forward-ME's "linked organisations":

http://www.forward-me.org.uk/LinkedOrganisations.htm

I don't think that's the same as being a Member of The Neurological Alliance.

 

[Andy]

I think most of our ME Charities aren't rich enough to do that? AfME maybe but I'm not keen on them being members anyway unless they really have changed their leopard spots.

Interesting to see their other list - the Corporate Supporters!

Their membership rates don't seem particularly onerous to me, unless I'm missing something?

 

[Dx Revision Watch]

I don't think that's the same as being a Member of The Neurological Alliance.

Of course not.

I'm just noting that Forward-ME has a link with the Neurological Alliance.

 

[Dx Revision Watch]

Their July 2019 Report:

https://www.neural.org.uk/resource_library/neuro-patience/

https://www.neural.org.uk/wp-content/uploads/2019/07/neuro-patience-2019-1.pdf

NEURO PATIENCE

Still waiting for improvements in treatment and care

The National Neurology Patient Experience Survey 2018/19: Policy report


included Chronic fatigue syndrome/ME.

(Pages: 21, 25, 43 and 50)

See also:

Technical Report

https://www.neural.org.uk/wp-content/uploads/2019/07/Neuro-Patience-Technical-Report.pdf

(Pages: 45, 47, 48, 49, 68 and 71)

 

[Dx Revision Watch]

Existing thread here:

https://www.s4me.info/threads/the-neurological-alliance-patient-experience-survey.7047/#post-182430

The Neurological Alliance: Patient experience survey