Here are some of the “Best Letters” that we have featured in our Pain Matters magazines. Check out our current “Best Letter” competition, here.

We are always happy to receive letters about what is going on in pain in your area, something interesting that you have found out about pain or campaigns in pain that you think Pain Concern and Pain Matters readers would like to hear about.

 

Guidance on Prescribing for GP’s

You contrast the good fortune of UK doctors who have access to NHS Evidence, “an NHS library that is carefully compiled and kept up to date,” with that of doctors in the US who frequently resort to Wikipedia for advice (Pain Matters Issue 45). And yet, the information on neuropathic pain in Wikipedia is more up to date and evidence-based than that from the NHS. The Medicine Guides from the NHS Choices website offer as treatments for neuralgia (trigeminal neuralgia and post-herpetic neuralgia) aspirin, codeine and paracetamol. There is no evidence that these will help at all. The list does include other efficacious drugs but, if GPs start with more familiar (and cheaper) drugs before trying these, this will simply add to the frustration of sufferers. It gets worse: while researching my MSc, I compared  evidence-based guidelines with advice to GPs offered by NHS Clinical Knowledge Summaries (CKS) (funded by NHS Evidence). As first-line treatments for the most common neuropathic pain conditions (painful diabetic neuropathy and post-herpetic neuralgia), these recommended “standard/simple analgesics”, i.e. paracetamol and/or codeine. There was no evidence of efficacy in the sources quoted. I imagined that these websites would be rapidly updated following the March 2010 NICE guidelines (Pain Matters Issue 46) on drug treatment of neuropathic pain which adhere strictly to evidence and do not even mention “simple analgesics”. However, on 7 June, inadequate advice was still being presented as “reliable … evidence-based information” by CKS. Subsequently, the diabetes advice has been updated but not that for post-herpetic neuralgia. Finally, I recently tested out how a GP might search for information on prescribing for neuropathic pain. A typical consultation lasts some 12 minutes: a Google search for “neuropathic pain guidelines” leads straight to the NICE website, but at least five more clicks are needed before the guidelines on neuropathic pain are reached, and even then the document must be searched for the necessary details. Using the Royal College of General Practitioners (RCGP) website was even more time-consuming if accurate and complete prescribing
information was needed!
Any improvement in information for GPs is to be welcomed but there is still
much to be done.
Letter from Les Hearn MSc (featured in Pain Matters Issue 47)

 

Chairs Campaign

6 years ago I was involved in a serious car accident which left me with a broken neck and shattered pelvis. Life is harder for me now with fatigue, pain and memory issues. Still I am lucky to be alive and I want to live life as fully as I can. Things like shopping that are so easy for normal people are a bit of a nightmare because when I need to sit and rest, the shops don’t have any seats. Many others probably get just as frustrated, the elderly, disabled people or pregnant women. I am campaigning to get shops to realise just how much chairs are needed. Any support Pain Concern readers can give would be really appreciated.

Letter from Amanda Skinner (featured in Pain Matters Issue 46)

 

Unfair Medical Assessments

My wife, Philippa, suffers with cluster headache (20+ years) and trigeminal neuralgia (10+ years). I am concerned at the unfairness of the medical assessments for illness-related benefits. These flawed and incomplete assessments are used to cancel a claimant’s right to benefit. Illness and disabilities may vary from week to week, day to day or even hour to hour in the way they affect you. How then can an assessor compile an accurate  report on someone they will have never met before and will only see once on what passes as a ‘good’ day? On any other day the claimant may be too ill or in too much pain to attend the assessment. Some medical conditions are uncommon and poorly understood by non-specialists. How can  non-specialist assessors fully appreciate how the arcane intricacies of a rare neurological disorder affect someone’s ability to work? The assessors are awarded an additional payment for every appraisal that can be used to cancel a claimant’s benefit. Does not the bonus payment bring into question the integrity and impartiality of the entire system? Forty per cent of claimants, who have had their benefit entitlement incorrectly cancelled, have it  reinstated on appeal. But many will have been so demoralised or intimidated by the entire process that they reluctantly choose to accept a flawed judgement. What is the reason for so many assessments being overturned on appeal? Could it be an inevitable consequence of an assessment consisting largely of cleverly worded questions specifically designed to encourage the sort of answers that can be used against some of the most vulnerable members of society. And if you missed it, may I suggest you listen again to the BBC Radio 4 Money Box programme, broadcast on April 6th  (http://www.bbc.co.uk/iplayer/console/b0100gqy).

Letter from Roy Conolly (featured in Pain Matters Issue 49)

 

Hi Guys

As a person that lives with chronic pain I would like to say thanks for the radio shows. At times you feel like the only one out there, and it helps to know there are others going through the same issues. Your show helps me reinforce all the information that I received from the pain management center I attended, and that the principles such as pacing and exercise are universal. Keep up the great work.

Letter from Pat in Australia (Featured in Pain Matters Issue 48)