"Inhuman experience of pain management services in NHS Fife"

I recently sought help with managing ongoing chronic pain and related depression. I contacted Fife Psychology Services because I’ve been on a waiting list for ACT for one-to-one clinical psychological support for living with a complex overlap of physical health conditions, since August 2019. I was put on this waiting list over two years ago - but due to the pandemic and staff shortages this one-to-one psychological therapy hasn’t materialised - although I’m told I’m still on their clinic waiting list.  

Over the past ten years I have tried but so far been unable to tolerate any of the various nerve-gating, anti-inflammatory or opioid medications used to manage pain. My Tayside consultants have tried to help me access pain management in the recent past by referring me for both specialist  pharmaceutical infusions for pain, topical treatments and psychological help. 

However because I’m registered in Fife these   attempts by my NHS Tayside consultants have hit a brick wall with the doctor based at the other end of Fife from where I live, based in Queen Margaret Hospital, Dunfermaline. They have refused to see me again several times despite me apparently being pleasant, polite, receptive and knowledgeable during my only consultation with them in early 2019. 

This person wrongly claims that I’m awaiting psychological help for pain management (a different service to the one I am down for I’m now told) and states that they offered me pharmacological help previously. They did with much reluctance but it was another anti-trycyic I couldn’t tolerate.  

This staff member refused to let me try the Lidicaine infusions a Tayside neurologist requested last year on safety grounds and assumed that my various complex needs are already being met by my MDT in NHS Tayside. They are not being met because I don’t qualify for their Tayside pain or psychological interventions due to my Fife postcode.  

The consequence / impact this is having on me is that I now live in constant widespread pain and am getting no pharmaceutical nor appropriate psychological help whatsoever with managing pain or the resulting distress and fatigue caused by my complex mix of health conditions. 

A GP in my former practice referred me to a CPN a few months ago - who spoke to me briefly on the phone and put me down for Silver Cloud CBT online for interim help managing my pain. I tried really hard with this online tool but my fingers are too painful, my fatigue too intractable, my attention span too short and the response from the designated supporter was entirely generic. Consequently this online CBT for pain management actually caused me more harm than good. 

And so I wait on for my ACT to materialise over two years since assessment, found eligible and put on the list. 

I realise the pandemic has impacted greatly on the NHS and that psychological services here are inevitably spread very thin. But this isn’t just a Covid related matter because the Fife psychology service was already under much pressure pre-pandemic. 

My new Fife-based GPs won’t be able to help because 2 months since registering, they still haven’t received my notes from the previous practice - who were unwilling to help me beyond referring me to their community mental health nurse. The clinical psychologist who originally assessed me has since been redeployed to work as a pain and weight management consultant. They did try their best to help last month but as I’m not down for this service, they tell me that I will not be able to receive pain management from there even if I do ask my new GP for a referral back to the Fife pain clinic. Therefore I'm told that I can’t contact them again and there is nothing my new GPs can offer either. I’m still waiting six weeks on for the promised clinical letter confirming this. 

And this is why I’ve been up since 3am in severe widespread pain once again, lying here trying to fathom how it can be humane to leave anyone living this way for so long. Being bounced from pillar to post by NHS Fife where it comes to their pain management services is an ongoing nightmare. I know from friends that it’s one affecting many. It is high time that NHS Fife revisited the pathways and protocols accessible to their patients living with longstanding chronic pain as a matter of urgency.  

Offering only CBT online for a person with my complex medical conditions is like offering someone dying of thirst in the desert a straw with only 3 drops of water in the cup.