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Karen McTaggart's avatar

Great post Prof G, I find MS Selfie a useful resource to understand living with my own MS.

I also get support from my MS service locally in NHS Forth Valley and from the MS Trust and MS Society and from Neurocentral.

I'm at a stage with my own MS and my growing understanding of what I'm dealing with that I'm relatively comfortable arranging my own appointments. I've had years of practice with my own MS now.

Keep up your good work Prof G it's appreciated.

Karen

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Tizzy's avatar

I think you’re correct in your assumption that ms selfie subscribers are more likely to agree to this as I absolutely do. I’d like to be consulted on how I want my care to be implemented and if I’m ever asked, my answer will be to ask for the chance to self assess in writing where I’d be happy for them to decide if I need an appointment or the other way round.

The ability to communicate desperately needs improving and dragging out of this archaic box ticking system consisting of; for example - randomised calls from my nurse but only during working hours, I’m full time and don’t know I need to be available. To call back means leaving an answerphone message, and so the game begins where we repeatedly miss each other.

Also, if patient’s have less appointments offered, it might mean experienced pwms can help push localised group meetings to include a more accessible time of day ie. outside of std working hours so everybody can attend if they need to, 11am on a Tuesday is no good for me. It could help alleviate loneliness for some but allow people to feel useful too as I’m unsure if the experienced pwms realise how invaluable they are to us newcomers.

Just my thoughts though.

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