Not NICE At All

Since 2016 I’ve experienced chronic pain in my lower back and hips. The quality and intensity of this pain changes, but I’m very rarely pain-free. Left unmanaged, this pain has a profound effect on my ability to think, concentrate, work and sleep.

The image has a solid blue background. At the top are the words pain plan underlined. Beneath that are other handwritten words in white, with a red line across them all. The words are pain medication, heat, patches, tens, physio, hydro, mindfulness. Other words not crossed out are acceptance, acupuncture and antidepressants. Below that with red crosses next to them, are Work, parent and exercise.

Last week the National Institute for Health and Care Excellence, otherwise known as NICE, announced draft guidancefor doctors on chronic pain which included advising against the prescription of pain medications, tens machines, anaesthetic patches and a number of other drug and non-drug based interventions that are currently prescribed within the NHS.

If implemented, these guidelines will slash the range of treatment options to just three:

  1. Acceptance and commitment therapy
  2. Up to five hours of acupuncture
  3. Antidepressant medication

This is a shockingly limited set of options and the idea that antidepressants will be the only long-term intervention available is exceptionally bleak.

Dealing with the pain itself is one thing, but the negative way pain management is often discussed in the media, particularly in relation to opioid medications has impacted on both the decisions I make in, and how open I feel I can be about my experiences.

Thinking about all this has prompted me to list all the ways I manage pain, to help explain how pain medications fit as part of a broader pain management strategy – here goes:

  1. Pain Medication – For the last few years my pain management plan has included taking an opioid pain medication called Tapentadol each day, as well as having Morphine I can take when I’m experiencing a spike that would otherwise be unmanageable. This medication was prescribed by a hospital pain specialist in consultation with my Tourettes specialist and my GP. To start with I was reluctant to take it because of the negative press around opioid pain medications – I even made this flow chart to help me decide when to take it. Before I had access to these medications my life, routines and ability to work were greatly restricted.
  1. TENS machine – This is a wearable device that disrupts pain signals using small electric pulses. I don’t find this helps significantly, but it’s useful to have something to try at times when other options aren’t possible.
  1. Heat packs – Warmth helps relieve my pain significantly, but because where it’s located is very specific, I need to be careful not to apply too much heat, too often. A while ago I over used heat packs and this led to Erythema Ab Igne, also known as Hot Water Bottle Rash!
  1. Hot baths – Baths aren’t a very practical way for me to wash but they’re great when I need to be more comfortable. They give me some short pain-free moments which are very much appreciated, but my bath time needs to be properly supervised in order to stay safe.
  1. Hydrotherapy – When my pain started everyone agreed that physio was urgently needed, but this was complicated by my tics. Hydrotherapy pools are the only places where I can do the types of exercises that help make a meaningful difference, and I’m lucky enough to live very close to one.Pre-pandemic I was going four or five times a week: any fewer and I didn’t feel the benefit. I only got a handful of formal hydrotherapy appointments with a trained therapist on the NHS, but the few sessions I did have helped me use my local pool to much better effect. Longer term access to expertise like this would help me a lot, but sadly it isn’t available on the NHS.
  1. Physiotherapy exercises – While everyone agreed physio was necessary, accessing appropriate provision was complicated. Eventually the community neuro-physios visited me at home for a handful of sessions and I now continue these on my own as best I can.
  1. Exercise – As a wheelchair user with a very wiggly body the ways I can exercise are limited. In addition to swimming I also rearranged my working week so I could attend accessible cycling sessions. I’d love to cycle more often, but the sessions are only weekly and accessible cycles are expensive, so buying my own isn’t practical.
  1. Mindfulness techniques – I’ve completed a number of mindfulness programmes designed for people who experience pain. These techniques are useful as part of a wider pain management plan, and in my experience they work best when used in combination with practical interventions.
  1. Medicated patches – My GP prescribed some local anaesthetic patches for me to try when I was keen to expand the range of non-opioid options open to me. I find these very helpful particularly as I can’t always use oral pain medications because they conflict with other medications.
  1. Postural support and orthotics – As pain became a more persistent and intrusive presence in my life it seemed sensible to review my wheelchair to make sure it was supporting me as effectively as possible. NHS Wheelchair Services worked with me to try to get a chair that fitted me better and they provided me with the best chair they could, but there are restrictions on the range of equipment they can supply, and they concluded that it wasn’t possible for them to provide all the modifications I needed in one chair or within NHS funding limits. But last year, thanks to funding from Access to Work, I got a chair that was made to fit my body very precisely. It’s helped reduce the intensity of my pain and means I can go for longer without needing to get out of my chair to lie down.
  1. Changing position – At home and work I always have mats around so I can lie flat, out of my wheelchair, whenever I need to. When I’m attending meetings or working in new locations, I always carry a folding mat with me.
  1. Pacinglearning to pace myself and take regular breaks has been crucial for me to continue doing the job I love. It took time and practice for me to get this right though, and even now I sometimes misjudge how tired something will make me. Constant pain is exhausting and means that even simple tasks can take longer to complete.

None of the interventions listed above are supported under the new guidance.

For me, having a range of pain management options is vitally important because it means I can adjust my approach both to the intensity of the pain, but also to what I need to achieve each day. I don’t experience pain in isolation – what’s manageable on a day that I’m at home with few commitments is very different to workdays when I’m going from meeting to meeting.

None of the options outlined in the NICE guidelines would work for me. Here’s why:

  1. Acceptance and commitment therapy (ACT) – Reflecting on my relationship with pain using mindfulness and CBT-based techniques has been useful as part of a wider plan that gives me practical options as well as behaviour and thought based strategies. The ACT programme doesn’t seem to offer anything I’m not already utilising, and I can’t imagine how it could possibly work effectively with such limited options alongside it. I’d be interested to know what research has been done to look at the effectiveness of this treatment in isolation.
  1. Up to five hours of acupuncture – as someone with a movement disorder and issues with impulse control, I can’t imagine acupuncture being a safe option for me! Also, limiting the treatment to a maximum of five hours means that those with more complex requirements will not benefit equally. The fact that two thirds of disabled women aren’t able to access services like smear tests due to a lack of equipment doesn’t bode well for equality of access to acupuncture services.
  1. Antidepressants – As someone with Tourettes I’m familiar with being recommended drugs that’ve been designed for other purposes, and I’ve tried medication where the side effects have been more disabling than the original issue. While there’s some evidence that antidepressants can be used to relieve certain types of pain, they can come with significant side effects, and people’s ability to tolerate these vary. Experts disagree over the use of antidepressants for treating depression and don’t fully understand how they work, so this type of medication being the only ongoing treatment option for chronic pain makes absolutely no sense.

If implemented, I can’t see how NICE’s guidance will do anything other than damage the lives of everyone who experiences chronic pain. Reducing the options without investing in workable alternatives risks condemning millions to unnecessary suffering.

My current GP has been incredibly supportive, sensitive and pragmatic when it comes to helping me live with chronic pain. Not everyone’s as fortunate though and I’m concerned that these guidelines will restrict good clinicians and justify bad ones. They risk reinforcing and embedding negative assumptions about chronic pain across the health service, radically impacting the lives of people in pain.

Surely the answer to chronic pain is investing in research to expand the options rather than cutting the available treatments to the bone. I urge the medical community to re-visit this issue, to think holistically, and talk to those of us with lived experience about approaches that genuinely support our quality of life.

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