Last reply 9 months ago
Feeling alone.

I am suffering my 2nd relapse in 4 months. Cannot contact MS nurses… still no response after 3 days, cannot contact my GP.. phone rings and rings. Local support group helpline does not answer or reply to messages. I reach out but nobody answers. It has come to the stage where I need help/support.
Does anyone know who I can call?

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9 months ago

@negimaru Sorry your feeling alone, you are on the right place here.
I know how you feel my MS nurses say it takes roughly 4 days to respond and to contact your GP if urgent πŸ™
I’m not sure who you can call sorry πŸ™ I’m sure stumbler will be along shortly.
so sorry I can’t answer your question.

9 months ago

@negimaru, I don’t know either but I am sending you a big tight hug through this forum. Things will get better. Be strong.


9 months ago

Hey @negimaru, that’s a horrible position to be in. If your MS nurse is based at the hospital you could try contacting the PALS number there as a starting point. Do you have any friends or family who could raise a storm on your behalf? This is quite unacceptable. But at least you have support here x

9 months ago

@negimaru Sorry to hear you are struggling at the moment.

As @shona12 says, at you have found people who understand what you’re going through.

Can you ring another GP surgery for an emergency appointment? Or perhaps there is a walk-in centre near you?

If you feel the need to speak to someone over the phone, the Samaritans are open round the clock, 24 hours a day, 365 days a year. You can call from free on 116 123 in the UK.

9 months ago

0800 783 0518

That’s the helpline number for MS-UK.
They say to give them a call if you are looking for helpful advice and emotional support.

Not exactly what you’re after but may be worth a call.

Best wishes.

9 months ago

@negimaru , do as @vixen suggests and contact the PALS team at your hospital.

You could also try contacting your Neurologist’s secretary.

Be persistent and make a noise, but always remain polite and courteous

9 months ago

Sadly, very few things seem to make the NHS jump faster and higher than the whiff of a complaint.

Google the Chief Exec of the trust and write them a polite email asking for help. I suspect you’ll be beating them all back with a stick in no time. Then do the same for the Senior Partner at the surgery. Always being nice and bright and smiley but asking them to help you understand what is the best way to get in toch as the traditional channels are not working.

They will appreciate some approx times and dates.

The MS Nurses *ought* to have an answerphone.

Best of luck.

9 months ago

I know exactly how you feel. My MS nursing team finally have an admin but still often get answer phone and heart drops!
1. Leave a voice message. 2. Ring neurologists secretary and explain. 3. Try the M&S society helpline. 4. Deep breath and keep strong x

9 months ago

Have a word with your ms nurse or the neuro dept when you finally get through. If you haven’t been on steroids intravenously ask them for a prescription of oral steroids, also get them to write to your gp and get them put on your regular list, you can only take them twice a year but it helps to have some in, just in case, and take them on holiday with you. The protocol has changed and instead of a reducing dose they now recommend hitting it hard and fast so you take 8-10 tablets a day for about 5 days, don’t know the exact derails as I only saw my ms nurse 2 days ago and she told me then but she us putting it in writing for me cos I forget things. I had to discharge myself from A&E after 10 hours when I was relapsing cos they wouldn’t treat me cos they didn’t believe I was relapsing and wanted to observe me in A&E for a day, but I start to lose my sight after 12-24 hrs and intravenous steroids stop the deterioration almost straight away, but I had some oral prednisolone ‘in stock’ at home so I discharged myself, got a taxi home and started the tablets straight away. I have had the beast for 26 years and know my relapses very wel, certainly better than the 3rd yr medical student I got in A&E. Good luck and keep us posted.😍

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