The Problem I've Found With How the NHS Treats Chronic Pain Patients


For 35 years I’ve been in pain. That’s my whole life. I don’t know any different. The only difference I know is whether my pain is at a four or a 44. I don’t measure my pain on a scale of one to 10 because that stopped making sense when I was 6 years old. So please, dear musculoskeletal specialist, tell me again how you are referring me to the Pain Clinic to “learn how to make friends with [my] pain!” I think a whole life in pain would suggest I’ve learned long ago that there are coping mechanisms that work and ones that don’t. The only reason I’m here in the first place is because the pain now requires medical intervention.

 

I’ve been in this NHS merry-go-round for 18 months this time around. My GP is fantastic. I can’t fault her. At every step she and her colleague, whose specialism is sports injury, have been at my side, trying to help me manage my combination of disabilities and disorders with the limited resources available to them. They know the NSAIDs no longer work, they know I won’t take pregabalin or gabapentin because I’m worried about the side effects and interactions with my PTSD and the medications for it, that the minor relief from lidocaine patches is a blessing but not enough. But my healthcare team needs to be more than this.

The musculoskeletal clinic gave me hope for help, only to be told they can’t give me the pain relief I need and can’t prescribe the medications I want to try, even though the specialist said we could try that route if I chose to. She contradicted herself and now says I have to get the prescription from the pain clinic, if they agree to it. Low-dose naltrexone is approved for fibromyalgia. It won’t conflict with my other medications, but I’m in the middle of a lottery as to whether I’ll get it, despite approved studies.

The local hospital radiography lost my ultrasound referral so an ultrasound that should have been done in weeks took eight months. Which delayed being told I had to be referred to the pain clinic by months. I’m still on their waiting list. I’m going round in circles and I’m worn out.

And I’m not the only one. I’ve spoken to a number of friends with chronic pain conditions who are under the care of the NHS. One was given a choice of four medications, three she can’t take because of other medical issues, and one that caused heart palpitations. It was only from researching it that she discovered that heart patients like her shouldn’t be taking it. Her specialist should have known; her heart condition was in her records.

Another friend has been passed from pillar to post. Each joint with arthritis needs a different specialist apparently because it’s another part of the body with the same condition.

And yet another friend, like me, has gone for years without any real relief because we just can’t get it.

Let’s not forget the friend put on opiates before the internet became a common thing in every home, who has recently undergone NHS-funded rehab to come off them in order to try and get her addiction to them under control and find a different way to deal with her pain.

Don’t get me wrong, the NHS in principle is an amazing thing. I know there are amazing people who work for our British healthcare system who just want to help, but, with lack of funding, there is a lack of research into chronic pain, a lack of understanding of patients’ needs, a lack of services and a lack of time to devote to individual treatment plans.

Those of us with chronic pain disorders shouldn’t have to go to our medical professionals armed with sheaves of paper that show our research into our conditions because it should already have been done. And we shouldn’t be made to feel like we don’t matter. Most of us would rather join the workforce than be full-time patients.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Spotmatik.


Find this story helpful? Share it with someone you care about.