IN GP surgeries up and down the country, people with significant disabilities who have been functioning on opiate medication are having these vital medications withdrawn, forcing them to live shadow lives where they are no longer able to function.

Are a large proportion of those no longer able to work due to ill health – the same people whose pain medication has been cut or withdrawn?

My spinal cord injuries (SCI) happened when I was 18 but it wasn’t until I developed severe secondary conditions that pain became a problem.  

Under the guidelines from Nice I am an example of someone with “chronic secondary pain,” as my pain is due to diagnosed conditions — SCI, an amputated lower leg, Kyphosis, and early onset Osteoporosis.

To describe the pain, it’s easier to show how it has impacted my life. I was once sociable, enjoyed spending time with friends and family. Now, that has stopped. I am isolated both by my disability but also by choice as I can’t tolerate being around people.

It’s also tiredness that makes me withdraw, as I feel as if I’m living in some sort of blur. I wake up during the night in pain, and then wake early, reluctant to start another day.

It wasn’t until I read a comment from someone who also suffered from chronic pain that I thought about how my own life had changed.

He is married but he worries about the impact on his marriage because his wife thinks he’s a different person than she married. She still wants to go out as a couple, go on holidays and have children.

Like me pain has meant he is more guarded, pain has flattened his personality and mood. He doesn’t feel she understands, and I know how that feels. 

You might wonder why we aren’t on enough pain medication to address this, and this is where the story really starts, because many of us were managing. It was a medicated existence but one in which we could function.

When I had to move home, I also had to register with a new GP surgery. They were immediately alarmed at the amount of morphine I was on and without even examining me, it started to be cut by the pharmacist attached to this GP practice.

Initially, I didn’t challenge this but when pain began to break through, around the 200mg twice a day mark, this cutting needed to stop. But it didn’t. As these prescriptions were issued, my life became smaller. 

A few months after I had moved, a bony lump appeared on my back. It is the size of a golf ball. A GP came out to examine my back and do some checks. He appeared to understand my need for pain relief, not so much for the lump but for the state of my back overall.

But my hope that would result in a change of approach was short lived, as again my medication was cut.
 
I am not alone. I mentioned the man earlier who was worried about the impact of pain on his marriage. This example was from a forum for those living with pain and a constant theme from those in the UK is the sudden withdrawal of opiate medication. 

People who have had to give up college courses and work due to medication that was been cut or withdrawn. Many of those putting messages on this forum have diagnosed conditions and disabilities that are known to be painful, many like me living with multiple secondary conditions. A common theme is how this medication has been withdrawn without anyone examining them. 

Often those living with long-term chronic health issues also have mental health problems. For this cohort it has become clear that doctors are using these issues as a reason for removing these medications by saying they are concerned such powerful drugs might be used in an overdose or that the patients are exhibiting “drug-seeking” behaviours. 

In some instances, surgeries are refusing to treat them completely. What impact this is then having on the demand for mental health services is something that needs investigating.

Policy makers are scratching their heads as to the size of the group that are now no longer able to work due to ill health. I would guess that a sizeable group would be those that no longer have the pain relief they require to be functional. As when pain relief is present and effective, a barrier to work is taken down.

It doesn’t have to be like this. Nice have already separated out the categories of those who are in pain and by using these, surgeries should be able to target treatment more effectively. Not a blanket withdrawal plan for all except those at the end of their lives. 

RF Hunt is a freelance journalist and author, who is a member of the disabled community