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Benefits/assistance for CPSP sufferers

Ruthy

Hi,
I’m about to embark on my 2nd pain management program at the end of Feb (did my first in 2017 1 year after cpsp started). It will be a good reminder.
The reason I asked for referral to the program was to try to get access to someone who might be able to refer me for other treatments TMS, hydrotherapy, anything that isn’t more meditation really. It because as many others will agree, the pain seems to be getting worse more frequently (I also suffer with not quite chronic migraines) and things like driving is becoming increasingly more difficult (painful and mentally draining and the brain fog from meds 9 years on is crazy). But, there’s no help - I can’t get an automatic car with heated seat etc from the government because I’m not disabled and I can’t afford one. There isn’t even a railcard available to us (because I’m not young, an OAP or disabled) what are we classed as!
It seems from investigations that cpsp is very similar to fibromyalgia, but people tend not to recognise our illness as debilitating. I’m ranting sorry.
Does anybody know if there are public transport discounts we can get because I feel unsafe driving these days - especially new or infrequently used routes.CPSP Recognition

Simon

Ruthy
Did you look at the links in the

https://stroke.logicalmodel.net/flarum/public/d/167-benefits-and-concessions-by-kgb

I don’t know that there’s anything but that’s where I’d start I’d also ask folk like citizens advice in the

https://stroke.logicalmodel.net/flarum/public/d/84-finding-support-groups

Nige

Ruthy I have had the 2nd week session and I am thinking, get on with the details.
I get the feeling a number in the group have MH issues and I might have been suffering more than most on the day. I wasn’t really prepared on the first week for the audio battering I took from the chatting and just general noise.
I don’t think as a whole, that they can explore any detail whilst maintaining interest across everyone in the group.

I take it you have had a look into pip ?

Nige

Ruthy motor cortex Stimulation is used to combat migraines and CPSP….. Two for the price of one ?
Suspect it’s not that simple

Ruthy

Nige yeah, it’s a bit too general the pain management program, there are so many different types of pain being addressed under one group. It’s fine as it gives pointers on how to adapt to your own pain. But I really wanted to see an expert to get assistance, so I might be able to make enough of a nuisance of myself for them to want to refer me to someone just to shut me up 🤷‍♀️🤞🤞🤣🤣

Ruthy

Nige I had my own payment protection insurance at the time of my stroke and have thankfully been receiving a monthly payment from that for the last 9 years. But I looked into pip a while back, it seems to be that you need to be quite incapable of living independently - I think apart from lifting heavy things or driving I’d be OK on most days. I might have another look 😊

Ruthy

Nige that’s helpful, thank you. Didn’t even consider it for my migraines. It might help with my case 👍

Nige

Ruthy I am 2 weeks in of the 12 and don’t want to sound like a dick/snob etc but yeh it does seem that it won’t give me any major steps forward. I feel I am much more advanced than the group in my understanding, in an area where it isn’t absolutely certain what the cause of cpsp is anyway.
One item I picked up on early on, you work with the person next to you. I don’t actually know if anyone in the room has neuropathic pain. The bloke next to me, as interesting as he was, broke his sternum and despite surgery, it’s not fully knitted back together.
Plenty of chronic pain but really nothing in common.
Why not place people with similar pain types.

It is a hassle to get there and back but I wonder if I drop out, will they stop supporting me with anything else they offer. Who knows

Simon

Can we between ourselves identify who the top half a dozen pain specialists are in the UK in neurology

Then create some open letters to MPs and them to raise the profile?

Does anybody want to “take point” on doing this

Ruthy

Simon I’ll have a look. My reply from my MP was basically we’ve got more pressing issues to sort out. But I will happily go at it again with the top bods copied in or vice versa 😁

Ruthy

Simon
Like @Nige says it’s quite tricky to identify pain experts in our desired fieldCPSP or even neurologist whose interests are centred around pain.
I found this Dr,
Dr Alan Fayaz:
Consultant in pain medicine, anaesthesia and perioperative care at UCLH, and honorary associate professor, University College London.
His clinical interests include the management of patients with neuropathic pain, pain relating to neurological disease and complex general pain
Telephone:
020 3448 4776
Email:
uclh.pain.query@nhs.net

Then I read an article, I think in pain concern magazine or similar - it may have been the article @Nige posted, it referenced these chaps,
Prof Turo Nurmikko:
Professor in Pain Relief, The Walton Centre NHS Foundation Trust
Dr Kausik Chatterjee:
Consultant Physician in Stroke and COE, Countess of Chester Hospital NHS
Foundation Trust Hon. Visiting Professor in Stroke and Medicine, University of Chester
Dr Bernhard Frank:
Consultant in Pain Management, The Walton Centre NHS Foundation Trust

It can’t hurt to include them in communications.
Also include the likes of pain concern, pain relief foundation and British pain society
help@painconcern.org.uk Website: painconcern.org.uk/about-us
secretary@painrelieffoundation.org.uk
www.painrelieffoundation.org.uk

Ruthy

Was just looking for Prof Irene Tracey as I know she’s a big deal in pain and came across this, I thought it was worth sharingResources https://www.penguin.co.uk/books/306933/pain-a-ladybird-expert-book-by-tracey-irene/9780241345535

Simon

Ruthy
I’m suggesting that we do something coordinated

I’ll do some looking around to involve and which organisations and then I suggest we do some shared public posts and then send the links.

I also suggest if your MP said “dear constituent not interested I’m busy doing other stuff” that we ‘name and shame’

This needs to be on visibly on agendas and I think if we are seeing to have a material in putting it on the agenda then we will get the traction and other topics that will amongst other things be one in the eye for the Stroke Association’s complacency - I don’t think we could possibly be less successful than may have been on this.

@Nige ?

Simon

Well the first thing I found is horribly out of date but would be a start

https://publications.parliament.uk/pa/cm/cmallparty/register/chronic-pain.htm

And also

And
https://painconcern.org.uk/push-parliament-recognise-burden-pain/

Nige

In terms of pain experts, I think my go-to place might be The Walton Centre in Liverpool.
I first came across them and one of the few mentions of longer term with CPSP (some pretty dreadful outcomes which made me think this is going to be tough).
This is the consultant who wrote the piece
https://www.thewaltoncentre.nhs.uk/consultants/frank-bernhard/442434

Nige

https://www.britishpainsociety.org/pain-news-members-access/

The March 2020 magazine has a few pages on CPSP and TMS.

Nearly 5 years on, nothing has changed.

Nige

One of the slight difficulties with this, the surgeon leading the DBS pilot in Oxford is Prof Alex Green.
I am not entirely sure if he is an expert in pain (he obviously knows a lot) or a real expert in DBS (which he definitely is).
I don’t think I have seen anyone yet who I would describe as an out and out pain consultant.

Simon

Start anywhere and improve our links & conversation from there?

Gotta be more potential in actively connecting / questioning/ lobbying then there is in being passive

3¢

Nige

The British Pain society seem to be quite a decent resource. The patient leaflet link I posted would be a good starting place for people on their CPSP journey

Scroll-Me :)\<-&->


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