NICE is at the centre of another growing scandal

NICE logo - it has delayed the publication of ME/CFS guidance
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The National Institute for Health and Care Excellence (NICE) is at the centre of another growing scandal. This time, it’s over its guidelines for treating people living with chronic pain. NICE has removed various pharmaceutical treatment options to the dismay of patients and charities alike – because they can be effective for some people.

So, one campaigner has launched a petition. And it’s sorely needed. Because the situation has echoes of a scandal over NICE’s guidelines for another chronic illness: ME – this time where some medical professionals tried to corrupt and subvert NICE’s processes and those in charge of them.

NICE: chronic pain guidelines

Millions of people in the UK live with chronic pain. There are varying estimates on the approximate number – ranging from 15.5 million to 28 million. Whatever the number, the debilitating life that accompanies being constantly in pain is widespread. So, in April NICE published its finalised guidelines on treatment for chronic pain. It redefined what it considers pain to be breaking chronic pain into two areas. It defines the first – chronic primary pain – as that which has:

no clear underlying cause, or pain (or its impact) that is out of proportion to any observable injury or disease.

NICE also says it’s pain “that lasts for more than 3 months”. It has also included some conditions associated with chronic primary pain, including:

fibromyalgia (chronic widespread pain), complex regional pain syndrome, chronic primary headache and orofacial pain, chronic primary visceral pain and chronic primary musculoskeletal pain.

Conditions like fibromyalgia have no known cause (or patient’s pain is out of proportion), and therefore NICE considers them primary.

Read on...

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It defines chronic secondary pain as that which:

an underlying condition adequately accounts for the pain or its impact.

Contention

These two definitions are contentious. For example, the Faculty of Pain Medicine (FPM) noted that:

The guidelines state chronic primary pain has no clear underlying condition and that the mechanisms underlying it are only partially understood. This does not mean that this [chronic primary pain] is a single entity [one thing causing it] and current understanding needs to develop to gain a better understanding of the underlying mechanisms.

It continued:

There is also a real risk that those classed as having “chronic primary pain” will include large numbers of people with a different, ultimately identifiable cause of pain, to whom this guidance should not apply.

NICE’s updated guidelines for treatment have cemented the controversy.

Pain meds: gone

The guidelines have removed various options – namely the pharmaceutical ones. As the Pharmaceutical Journal wrote:

The new NICE guidance… recommends against the initiation of opioids, paracetamol and non-steroidal anti-inflammatory drugs for those patients

Opioids are controversial because of the possibility of patients becoming addicted to them. In the UK, the amount doctors have prescribed to patients has rocketed since 2006. Research by the University of Manchester found a:

  • Five-fold increase in codeine prescriptions from 484 prescriptions per 10,000 in 2006 to 2,456 per 10,000 in 2017.
  • 30-fold increase in oxycodone prescriptions from 5 per 10,000 in 2006 to 169 per 10,000 in 2017
  • Seven-fold increase in tramadol prescriptions from 101 per 10,000 in 2006 to 690 per 10,000 in 2017

But currently, many patients have little other options to help manage their pain. For example, research by the Pharmaceutical Journal found NHS waiting times in 2019 for pain clinics ranged from 6 to 117 weeks.

So, what are patients left with?

“Barbaric”

Claire Swain lives with chronic pain. She has launched a petition over the guidelines. You can read and sign it here. Swain told The Canary:

Under the new guidelines, people like myself are only being offered anti-depressants, exercise, acupuncture and therapies such as Cognitive Behavioural Therapy (CBT) and Acceptance and Commitment Therapy (ACT) as chronic pain management because NICE no longer approves vital pain relief medications and treatments, even though these have been shown to work for many patients. These treatments are fine as part of a toolkit of options but as the only resource they are frankly barbaric.

While the alternatives on offer may help some people with chronic pain, they will not provide the quality of life and ability to function normally that many gain from appropriate pain killers. When you are in such agony that all you can do is curl up into a ball, exercise is not really a realistic option. Neither are therapies such as CBT, ACT and acupuncture, which usually have very long waiting lists if they are available at all on the NHS.

What’s more, the evidence for things like exercise therapy being used in conditions like fibromyalgia has been called “insufficient” by one renowned medical organisation.

“Insufficient” evidence

Healthcare professional Craig Elmer analysed NICE’s evidence base for aerobic (‘cardio’) exercise for The Canary. Some of it was cited by NICE as being in research charity Cochrane‘s review of aerobic exercise for fibromyalgia in 2017. This is where researchers for Cochrane pool together studies into this and put all the results together. When Elmer looked at Cochrane’s review, he found that some of the studies’ control group of patients (where ‘treatment as usual’ continued) were already receiving some form of pain relief. Ultimately, Elmer found that Cochrane had said:

Evidence is insufficient to reveal the effectiveness of one aerobic exercise intervention compared with another, or of anaerobic exercise intervention compared with education, stress-management training, or medication, for adults with fibromyalgia.

‘Low quality evidence’

Cochrane’s review also noted that:

Aerobic exercise does not seem to improve fatigue. The quality of the evidence was considered to be low or moderate because of the small numbers of people included in the studies, some issues involving study design, and low certainty of results.

Given that NICE includes fibromyalgia as one of the chronic primary pain conditions, it’s concerning that Cochrane’s review of the evidence (some of which was used by NICE) found that one of its recommended treatment’s evidence base was “insufficient”.

NICE’s recommendations of exercise and psychological therapy have also been contentious in another chronic illness.

ME: here we go again?
One of the studies that NICE used as evidence was for graded exercise therapy (GET), although it is not named as such. Here, it made patients do walking and resistance circuit training, increasing them in increments. Another study did the same with aerobic exercise. 

GET was NICE’s recommended treatment for the neuroimmune disease myalgic encephalomyelitis (ME). This was up until it changed its guidelines this year. NICE was effectively forced to remove GET because of the harm it caused patients. One study found that over 50% of ME patients who doctor’s prescribed GET to were harmed. Moreover, CBT has also been found to be ineffective. Given this, it is of concern that NICE would use GET as evidence on how to treat chronic pain – which, like ME, it defines as having no known cause.

NICE: hiding the evidence?

It also seems NICE is reluctant to fully explain its decision making processes behind changing its chronic pain guidelines. Swain sent Freedom of Information (FOI) requests to NICE in April. She told The Canary:

We are asking for the unpublished data that was used in the decision making as we are unable to access it. In addition, many of the academic/medical journals that were used to make the decisions in the chronic pain guidelines require a huge cost to access them. Even my medical friends are unable to access them all through their work place.

It took NICE until October to assign a caseworker to the FOIs. Then, it refused them. So Swain has gone to the Information Commissioner’s Office (ICO) to lodge a complaint. It stepped in and has forced NICE to make a submission to it by 17 December. This appears to be a systemic issue for NICE.

Corruption and subversion?

Because with the ME guidelines, some also did an FOI. NICE at first refused to release all the information the FOI asked for, about exactly what went on behind the scenes with its processes. So, the FOI requester had to ask NICE to do an internal review before it would publish everything. The FOI revealed, as The Canary reported:

text messages and emails where individuals from not only the NHS but also supposedly prestigious Royal Colleges were trying to interfere and exert influence over decisions at the non-departmental, independent public body… (NICE). The revelations… paint a picture of attempted subversion of NICE procedures and potentially even corruption.

One of the individuals lobbying NICE was from the Royal College of Physicians (RCP). It’s worth noting that the RCP was involved in developing NICE’s chronic pain guidelines – which, in terms of treatment options, have ended up being similar to what the RCP tried, but failed, to get NICE to implement for ME.

Speaking out

The Canary asked NICE for comment. It had not responded at the time of publication.

Swain is not a lone voice in her objections to NICE’s new chronic pain guidelines. For example, the charity Pain Concern expressed similar sentiments to the FPM. It also said:

As we feel the guidance is based upon crafted-together evidence rather than scientifically-strong evidence, then to remove much of the current toolbox seems to be poor timing in our view.

So, Swain’s petition for parliament to debate the new guidance seems crucial. She told The Canary:

My goal is to get 100,000 signatures so the petition will be debated in parliament. We want the government to consider the evidence and hear the statements of relevant stakeholders and campaign groups, including people with long-term pain issues.

All we are asking is that parliament will take our views into account and convince NICE to reconsider its guidelines. We know that prescription pain killers and surgical interventions are not the answer for every chronic pain sufferer – we just want them to be included in the toolbox of treatment options available to us again.

NICE: systemic problems?

On first glance, it would seem bizarre to remove treatment options that if properly managed by a medical professional can help chronic pain. But delve deeper into the NICE guidelines, and it seems there are more factors at work here than meets the eye. It seems NICE has focused heavily on exercise and a psychological treatment path for chronic pain. This is exactly what certain medical professionals were pushing for it to do for ME. In that instance, they partly failed. But with chronic pain, it looks like they haven’t. The Canary will be looking into this further.

For patients, NICE has now left them with very few options. Already their physical suffering is poorly understood. Now, NICE has advised doctors to essentially tell them to exercise and ‘think themselves better’ with CBT. This psychologisation of a physical problem will be all-too familiar to ME patients. But with a parliamentary petition now underway, hopefully Swain and everyone who has to live with debilitating pain day in, day out, can see some light at the end of the tunnel.

Featured image via NICE – YouTube

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  • Show Comments
    1. Thank you, Steve and The Canary Newspaper for your support. It is greatly appreciated by all of us! I am receiving so many messages via the campaign from chronic pain patients who are in severe distress and some are suicidal due to having their vital pain relief taken away. As the Faculty of Pain Medicine (2021) warned that the guidelines would be used as a blanket response for all types of chronic pain and we are seeing this through the campaign. If you would like to get involved in the campaign please follow me on Instagram @clairebearmelmel or follow the hashtag #ChronicPainisNotNICE – Thank you for your time, Best wishes Claire

      1. As a person living with endometriosis that wasn’t diagnosed until I was in my 40s, I want to fully support your campaign. It’s so common to wait many years for an endo diagnosis and be ignored by medical professionals. If painkillers can’t be prescribed for the symptoms of undiagnosed endo then people living with the condition will be at risk of suicidality. Depression is a common co-morbidity and the pain and fatigue can be so severe that normal life is impossible, but still we do not receive the proper medical support and the condition is still not properly understood.

    2. Total insanity! It is all about creating National dislike and distrust for the NHS! They want us to scream and shout for something better than the NHS, lets face bare bones and dry hide NHS leaves much to be desired, that is not the NHS’ fault, its the Greedmonger Vultures stripping it bare’ fault!
      If we had person specific Pathways from Diagnoses to Cure/Long-Term Self/Additional Care we may be able to live without chronic medication! I look at my big box of Drugs every Month and cuss how many drugs I have to take!
      I already experimented with cutting out and cutting down, but for the most they are on the heavy side and treat more than just pain, so that is going to be extremely hard to achieve! However there are many alternatives that are cheaper and far more effective as well as physical therapies to get us out and into the woods making and doing, but all such funding is cut!
      Forget about EVER SEEING Cannabis or Psilocybin for sale, even as controlled drugs, that would immediately open the doors for competition to the May et al Cartel Monopoly! And the Big Pharma would not allow it, as it is not Profitable to give people long-term relief with absolutely no nasty side effects or withdrawal symptoms, that’s how to make money, shove them full of extortionately overpriced drugs until they’re dead! The drugs that do give relief, take it off them! For pain stick them on another anticonvulsive or antidepressant! Costs more and much harder to quit!

    3. Pain tends to be due to the oversentisation of the sympathetic nervous sysyem. We go into fight, flight and freeze when there is pain experienced. So, we can learn to not need to respond in this way. Going into f, f and f can be let go of, or responded differently to by being with the underlying reason which can be such as an emotional loss, eg feeling alone and not recognising this, avoidance of acknowledging loss of relational experiences eg in childhood.
      The pain can be giving a message such as the need to slow down so you can reflect on what it is affecting you, with curiosity.
      See for instance:
      https://youtu.be/BxsBJgMKHrw

      1. Most adult who live with chronic pain have been through the Psychology of pain and tried everything from Ayurveda, Mindfulness, Breathing, NLP, etc,etc,etc, nobody wants to take loads of drugs, but if all these therapies and NHS available therapies fail to reach the pain source, it is only the drugs until something new to try. Personal Pathways are the only possible way of treating patients effectively, sadly we don’t all fit in the same square box even more sadly Clinicians and Doctors of all Disciplines will, chicken tooth, rarely go outside of that little square NHS box! It should be they who are fighting for ie Cannabis and Psilocybin legalisation, perhaps then People can start living Pain Free lives, as the root causes are finally treated and also the NHS can stop buying Generic Paracetamol for £10.00 a pop and the bill slashed to ease more stigmatisation of The Disabled PEOPLE!

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