You’d think I was asking for the moon on a stick!

Everyday living
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At the end of May I posted on here about equipment to help me lift my foot. I bought an aid as described but couldn’t get on with it, but it was worth a try.

It was also suggested I try to get a splint for my hand to wear overnight.

Local authority say their OT can’t help, so Itried MS Nurses to see if they could help. In 20 years I’ve never seen an MS nurse, they referred me back to local authority,who say it’s medical so I need to contact my GP. I did that online, can’t actually get to speak to anyone, and so far I’ve had o response. Probably don’t know what to do!
Moon on a stick, that would be easy I think.

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Hi Flowerpot

Why oh why do they have to make life so much harder than it needs to be, especially as MS is difficult enough,.

The only other way I can think of is whether a physio could send you to the hand clinic usually found in local hospital to make you a splint.

I’m so sorry this is making your life so much harder and I hope someone can help asap.

Pam x

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Well hellooooo Flowerpot & Skippy. How are you both doing?

I’m Lizzie Beth now but in the old days, haha, I was classychic or CC or Chrissie.

I left the forum for a while when it changed & it took me ages to start again.

Anyway, back to topic & getting the moon on a stick (love that phrase).

It’s terrible for you Flowerpot, I understand your frustration.

My first MS nurse was fab. She knew her stuff inside out. She retired early cos the Service was so bad. Since then I’ve only had a phone call here & there. Different ones who’ve not met me or read my notes.

The only suggestion I have is to speak to your GPs secretary or receptionist to make a face to face appt. Insist on it & explain how many passes to pillars & posts you’ve had to get nowhere. Suggest a Formal Complaint (not PALS), & they should jump through hoops to help you.

It’s a disgrace. I’m cross on your behalf!!
Take care
Chrissiex

Once your GP refers you to physio or occy health, they should get the ball rolling quite quickly.

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I’m so sorry that’s crazy and frustrating for you! But feel it’s happening to a lot of people I’m afraid , but it doesn’t make it right! Have you tried putting a complaint in, as it’s wrong that they won’t help you. You could ask for a referral to the OT as they should be able to arrange equipment for you and that’s what a brace is. I’ve just checked online for you, the other option you have is to buy a brace.
Getting in and out of bed, there is a bed that converts to a chair to help you out of bed.
Sorry I can’t help anymore.

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Hi

Nice to see you back I am okish but shall be pleased when this heat relents. Hope you are doing ok x

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Hello….. good to hear from you.
I don’t visit this forum much.
Preferred the previous one.

Eve xx

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You defo need physio, they will refer you to orthotics for splints and such like. I’m waiting for my appt with ortho to have my leg splint. You should be able to refer yourself to the OT through the council if the drs are not helpful.

The takeaway from this is your being treated poorly, they should be throwing everything including the moon and stick to help you stay well and safe. :weary_face:

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I did self refer to OT through council. They say they don’t refer to physio, and that it’s medical so I need to go through GP.
I’ve submitted online request to them which they’ve ignored in the hope that I’ll give up and go away.
In 20 years of MS I’ve had very little from the nhs and even less from the local authority.
I’ve bought my own wheelchairs, paid in full for adaptations, pay in full for carers.
I’m running out of money and the energy to fight.

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Surely you’re under a MS nurse and they should be part of an intergrated neurology team! It should consist of a MS nurse, physio, and OT. They should be assisting with any issues! Although it’s doesn’t always work that way. I hope you get the help you need to address this is for you.

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Haha :face_with_tongue: Never seen an MS nurse. Since Covid my neurologist does my annual review by phone, although the last one only happened 18 months after the previous one, and they last just two minutes!
I used to pay for physio but she retired. I’ve researched alternative Neuro physio providers but it’s £83 an hour
I feel I’ve been written off and as I said in an earlier response I don’t have the energy or will to fight any more.

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I’m sorry to hear this, and was just trying to help you. But I think quite a few of them offer a poor service which I find unacceptable! I find they all pass the blame onto someone else!
Take care flowerpot.

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Thank you. I know you’re trying to help. Sorry if I sounded a bit sharp.
I’ll try the GP again.
Eve x

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That’s okay flowerpot, I’m sure we all get frustrated at times with the lack of support and help, I know I do! It’s wrong that you’ve had to pay out for so much and not get any help!
Take care Eve x

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Eve, of course you’re despondent. I’m angry on your behalf.

Please, do not let this broken system beat you, but I totally understand why you’ve lost faith in the NHS.

Can this MS Society help in any way? Do you have relatives who can fight for you?

Good grief, I’m really angry that those in the know manage to obtain so much while those of us who are not used to such systems seem to be thrown on the muck pile.

Please, please insist on a face to face GP appt.

I know you had to fight to get a Soc.Serv. visit next week. Maybe, just maybe you’ll get some response.

The hospital PALS complaint system isn’t a real complaint - someone just phones to pass the message of “they offer sincere apologies” then close the file! I know this from my husband’s experience of being given a dangerous medication. He’s diabetic & the script was 50% sugar!

Our daughter complained to Pals & after 20 weeks a young girl phoned hubby to pass on “Sorry”

I took the call & said "of course they’re sorry…they’ve been found out. What is the next phase? She said “file closed now” I soon said “Oh no it isn’t, what are the options?”
“Oh, erm, hold on…silence…erm hello…sorry about that..erm if your husband wants to he can make a Complaint”. Me “I thought PALS was the complaint”. She “well, Pals isn’t formal”. Me…“what”

So we made a Formal Complaint & got told it could be 40 weeks before we hear the next stage.

So it’ll be over a year since the neglect before we can take it further.

We don’t want compensation, just to stop more errors with Scripts. Unbelievable eh.

Sorry Eve, didn’t mean to go off topic.

I wish you well and pray you’ll stick to your guns. The lack of services you e received is atrocious.

Chrissie x

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Thank you :heart: