A typical neuro consult?

Thank you for your empathy Sue. I understand you would have preferred me to have left my comments. I don’t usually delete things. But this relates to other people’s careers. So, y’know…

I was honestly trying to collect information so that I could go forward and make positive suggestions which would help everyone - including all those overworked professionals - rather than submit a complaint. I really wanted to hear how things work in other places first in case there were things other people found helpful or which made the whole thing more efficient.

I did not want it to be about me. Seems I messed this one up. Apologies. As you were.

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Is there a patient experience group PEG at your NHS trust? Or Patient Service User Disability Group? It might have another name.

These groups I find are positive.

They are a way of people coming together not just raising concerns but also thinking outside the box, such as what can be done to improve services and experiences of patients.

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Brilliant! Thank you! I knew I had heard another acronym other than PALS, but couldn’t find it. Whenever I have contacted PALS in the past they have just wanted to escalate a complaint, which I don’t think is helpful.


Sue, the person who has started the thread can delete the lot if he/she wishes (I think that’s right anyway). That would have been the easy thing for Teal to do. Thank you, Teal, for instead having gone to the trouble of deleting where you needed to and preserving others’ thoughts and experiences for the rest of us to read and learn from.


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Good point Alison.


Good points all round:

Teal has legitimate concerns and raised it.

I think it’s a common experience people respond differently too.

No need to delete it.

If something awful happened - it happened.

The question is how often does this happen?

And what should be done about it?


I felt there was a need to delete it. And it would be kind of you to delete my comments that you blockquoted in your post, But maybe we’ll have to agree to disagree?

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Deleted as requested.


hiya teal

i have not read thru all your replies but heres my tuppence worth!

after 12 yrs of living with cr*p i have learnt its all down to luck. i know this shouldnt be right as there should be equal standards for all but the reality that i have found it does depend on your neuro/ms nurse/physio/ pt/a.n other. we all have different expectations and finding the person that u ‘click’ with is down to luck. i am aware this may sound harsh but i believe it to be true.

i have said for 12yrs that i wanted all those involved in my care to communicate. i rely on the experience and treatment from reiki masters, osteopaths, lymphatic drainage experts and well as medics (i include neuro, gp, physio and ot in that bracket)

its all about me! the nhs claim that i am the centre of my own care but until recently they wouldnt communicate with the others that i chose to be involved in my care.

i cried when 2 of them wrote/discussed me in each of their professional labels!

how do i contribute to making that happen for all? i have no idea is the truth but i wish all the very best in what you are trying to do!


Thank you

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Finding a good GP was the most important thing for me.

Take care all.


hiya fay

me too-had same for 25 yrs until he recently retired.

new one also great and appears to be very welcoming to making me the centre!


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