My partner suffers with EDS, Fibromyalgia, Pots/ Syncope and she also has Hip Dysplasia due to a bone forming issue that I can’t remember the name of.
Shes been fighting the NHS to try and get more help and the only reason she has a lot of her diagnosis is because I’ve paid private.
She got referred to NHS physio who practically wasted about 12 months and never even laid a finger on her to examine her. She was then palmed off to Pain Management/Pain Clinic and the first thing the guy said when we sat down was that he doesn’t treat her conditions.
He was very arrogant and just seems to be talking about obvious stuff that anyone could say. He said he’d do an examination in session two and that consisted of asking her to stand on one leg for 10 seconds and that was it.
Now he’s on about her doing an intensive group course that seems like it’s only about Mindfulness nonsense. Think she’s going to pack it in and just go back to private physio
Pain clinics in the NHS are more about helping you to learn to live with the pain, they aren’t focused on medication etc to treat the pain - they may on occasion do an injection or something but that’s not standard.
It’s more about coping skills and stuff, and maybe group things where people can talk about their pain with others who understand.
If she wants to discuss things like pain relief or other treatments, that would be done with either her GP, or if she’s under any hospital specialist with them.
It’s stupid because they don’t really tell you that so you go along thinking you’re getting help and it’s all like “try and not think about your pain” and “try and exercise” as if nobody’s ever thought of that before.
Yeah, it very much seems like she’s been palmed off with the promise that they can help with it. She wants tailored exercises that she can she do to try and help herself but they said they dont do that.
I have fibromyalgia, joint hypermobility, scolosis and suspected pots.
Consider putting in a complaint as this pain management physiotherapist doesn't sound like hes doing his job.
Ive just finished with the pain management team and to be honest it wasn't great. He did the best he could. Tested my nerves and other things like mobility. They dont prescribe medication so I only got dermacool cream and tailored physiotherapy mainly around my lower back pain. Recently I told him that my rib flare was increasing but if I tense and pull in a muscle it goes away. The noise and expression he gave was priceless like shock and amazement. So I followed the excercises he recommended but still have flare.
Ive given up.in them tbh. Will go to a private physiotherapist that has their own gym.
His other pearls of wisdom were “It’s not going to kill you” when she was complaining of certain constant pains. When she said she walked somewhere and she had to get a taxi back because it made her ache so badly, he just said “don’t walk as far next time”
I'm sorry but......Whaaaaat?
That's honestly mad and ignorant that he said those things.
Get that complaint in.
Is your partner on any medication to help with all the conditions? Was the private physiotherapist much better?
She’s on Gabapentin and Amitriptyline. Just been wanting to get help with exercises etc tailored to her but NHS just pass her off to different people who won’t even examine her. Shes had these meds for many years but looks like we’ll just have to stick with private.
Will tell him at the next appointment she doesn’t want to continue and won’t be taking up the course after looking into it. Hopefully it doesn’t go down as against her in the eye on pip
It’s upset her a lot because it feels like she’s just being palmed off and had so much time wasted. She’s been receiving pip and they commented originally they she hasn’t been to Pain Clinic.
She now feels like she’ll be penalised by pip if she stops going and sees a private physio and rheumatologist instead. Stressing her out a lot
This is my experience. I only ever get anywhere paying for private treatment, NHS is sadly useless for anything complicated or rare. Best physio i ever had was private a neurophysio specialising in EDS, they came to my house once a week for 2 months and I still use those exercises now! If you can afford it its worth it as you can continue to use what they taught long term for management.
Highly reccomend searching for someone EDS literate
She has seen Professor Chinoy before and he was great!
Im not familiar with him but glad she has someone good!