Saturday, 9 February 2019

Postcode Lottery for pain

I'm sure you're all well aware of the stories you've heard about people being unable to access the healthcare they need due to wear they live? 

Today saw me experiencing this for the first time.
Some of you may not know that my family and I relocated to UK from Ireland last summer and as such I've been having to start the whole health care thing all over again. 

So far it hasn't gone to plan, today proving this once again.
If it wasn't so painful the conversation would've been laughable 

Today's appointment was with Community Pain Services in Poole, Dorset. I'd been nervous about it hoping for an understanding doctor.
I must say she was that. The consultant was absolutely lovely. Very compassionate and, yes, understanding.
I gave her my collection of letters from previous consultants that detailed what treatment I'd tried and what the plan was going to be had I not moved.
She was open and interested in all my ideas from Low Dose Naltraxone to (of course) Medical Cannabis. She was interested to hear how I'd got on with Nabilone before (Nabilone is synthetic THC basically). Sadly I had to explain that although I had consultant prescriptions I was unable to obtain the drugs under the GMS system in Ireland and couldn't afford to pay the thousands I was quoted privately.
There I sat thinking omg this is actually going to be proactive. We will find something that works!!
Then she said the few words that would become her mantra for the rest of the appointment.
"We don't do that here / not available on NHS"
We discussed lignocaine infusion that I'd had with minimal relief and how the next step was Ketamine infusion, all along she's nodding.... "but we can't do that here".  Turns out that the trust doesn't do Ketamine. I'd have to get referred to Bristol pain services!!! Ah sure, only 5 hours away 臘.
Then onto LDN "not available on NHS" , Nabilone "not available on NHS" and of course Cannabis is "Not available on the NHS", even lignocaine patches are not available on the NHS.  Or rather not available on the NHS HERE!
"So how can I help you?" she asked. I actually nearly laughed.
We agreed that all the things that could be beneficial are not within her power to deliver.
She was however going to ask my GP to prescribe lidocaine cream...do they do it in buckets I wonder?? Small win but a win none the less.
So where to from here??
I do plan on writing to the trust to challenge their pain management provision because apart from the lidocaine cream the only other thing she could suggest was the "pain management program".
For those that don't know this is usually a 6 week or so program where you have to attend and sit in a room for a full day and learn about your pain and how to manage it. 
I've already done "retrain my pain" course, seen psychiatry (who incidentally documented how my depression was BECAUSE I'm in pain 24/7 and NOT in any way causative), try to practice mindfulness etc etc. Besides that I'm not physically ABLE to stay out of bed all day let alone travel to a class and sit all day.
Now I'm not dissing it as for some I've heard that it can be useful.
It's not THE answer though.
Practically though it was clear that my only option was to go private.
However like so many chronically ill this is simply not an VIABLE option. A lot of us scrape an existence, so private healthcare is simply a pipe dream.


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