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  • Helen Leigh-Phippard posted an update in the group Mental health and persistent pain 2 years, 2 months ago

    I took part in the online group discussion yesterday and have been thinking about it overnight. I made a point about pain still being pain and deserving empathy and treatment even if it’s “all in your head” and I wanted to elaborate on that point a little. I think it’s really important that the Q Lab does more work around this, especially around stigma and crisis care, because my experience has been that there’s a lot of stigma around chronic pain and a real lack of empathy. I find that because there is now an accepted narrative that chronic pain may have originally had a physical cause but that has been “healed” and so its “all in your head” many health professionals tend to take the view that you are somehow responsible for this and can heal yourself. This has happened a lot to me when I’m in crisis (I have CRPS now amongst other things, colloquially known as the suicide disease because so many people with it take their own lives because of the pain) so that really isn’t a helpful approach. I’ve done a pain management programme and I understand the reasons for this approach but I really think the narrative has to change because it’s misunderstood by health professionals and people who don’t have chronic pain. It puts the “blame” on the patient – in the same ways as resilience language is now being used to make people with mental health problems almost entirely responsible for their mental health. Of course we can take some responsibility for managing our pain , but it feels to me like the balance has tipped and the language is often being used to say that services have to take no responsibility for patients in agonising being pain. I’ve lost count of the time services have said to me “we can’t do anything for you” and passed me on to the next service, who say the same thing – or discharge me completely. And I’m left with huge pain levels, feeling suicidal, with nowhere to go except my GP, who refers me back and I sit again on waiting lists trying to hold it all together for another 28 weeks, until I’m back in the same cycle. The system needs to be joined up and someone needs to take responsibility for my care, because right now nobody (pain clinics, mental health services, physiotherapy, GP, MSK, neurology) does.

    • Hi Helen, I get this and well done on a very brave and thought provoking piece. The current system and set up for people with persistent pain is not joined up and is not a wraparound service based on the needs of the person in pain. Yes, there may be pockets of good stuff going on but I have not had any of this. It’s far too easy and a cop out for GP’s to prescribe medication without a little more thought going into psychological support to minimise the need for drugs. Basic health care/healthy lifestyle advice is better for our overall lifestyle, including exercise and should be at the forefront of dealing with persistent pain. Nobody is more resilient, more health conscious as me and yet I cannot shake the pain on a daily/permanent basis. This is where I need a multidisciplinary team to help me and provide the tools I am not skilled in. I also find it frustrating that the rug is about to be pulled from under us with cannabis, legal on prescription for medical use today. The guidance published yesterday makes it almost impossible to get for chronic pain – so again, forces people like me to get it off the streets or use things like Kratom. Politicians need to wake up, be brave and realise that chronic pain destroys life, is not being dealt with effectively and therefore more effective ways should be targeted at this growing concern.

    • Helen and Adrian – thank you so much for sharing your different perspectives on this. It feels like there is a real need for us to focus on the way people understand and empathise with pain, and why/ how this may be influencing or affecting the quality of service that someone receives compared to other conditions. I have been very moved by yours and others stories this week about the daily challenges it’s taken to get people to understand what you are going through, let alone provide the type of support that may be helpful.
      It’s great to have you both involved.