In regard to your excellent piece (Sufferers of chronic pain have long been told it’s all in their head. We now know that’s wrong, 28 June), I am writing to say how glad I was that the mainstream media are bringing attention to the pervasive lack of understanding that chronic pain is a neither “all in the mind” or “proper pain” that reflects tissue damage.
The charity Pain Concern was established in 1995 to help people living with chronic pain to better understand, and to live with, their condition, as well as to work with clinicians and service providers to ensure that patients’ voices are heard. Since then, we have produced many information leaflets and podcasts to further this aim.
Sadly, it is still the case that this understanding is not shared by all those who are involved professionally with the care of people who live with this condition. Our helpline and inbox continues to receive many calls and emails from people who are confused, exasperated, angry and even traumatised by the treatment that they have received, where they have felt that they are being told that their pain is not real.
We acknowledge that the understanding, which your article communicated so well, is a complex one and can be difficult to explain to sufferers. We are delighted that the Guardian has published a such thoughtful, accurate piece on the neurobiology of chronic pain. We would welcome further articles that aim to promote understanding and information on managing this complex condition.
Dr Martin Dunbar
Chair of the board of trustees, Pain Concern
Re your series of articles titled “The pain that can’t be seen”, there are three common problems in primary care that we cannot treat: chronic pain, depression and insomnia. There is no test to confirm the diagnosis, unlike blood pressure or sugar levels for hypertension and diabetes. There are few, if any, effective treatments.
We were told in the 1970s that there would be a “pill for every ill”, and some people still believe, or at least hope, that this is the case. Drug companies have produced hypnotics to help with sleep, but they are, at best, only effective when used intermittently. Antidepressants seem to help some people, but by no means as many as they are prescribed for, and withdrawal effects are much more than was originally admitted.
Recent Department of Health advice is that opiates, the only strong painkillers available for inflammatory pain, should only be used in acute situations. Similarly, it has advised that the evidence for pregabalin and gabapentin is inconclusive. The conditions are literally “all in the mind”, which does not mean that they are hysterical or fabricated. We know almost nothing about consciousness, let alone how to manage what we think of as malfunctions.
The mind and body have much stronger links than we used to believe, and the microbiome seems to have a substantial impact on many brain functions. But we don’t know how to tell who will recover with, for example, graded exercise and who will be worse. It may feel like being brushed off, but your GP really doesn’t know any of the answers.
Dr Michael Peel
Doctors don’t know how to deal with any chronic pain in my experience. I have had two knee replacements and I have osteoarthritis in my hands, feet and spine. This is documented fact following X-rays. And yet it’s been a struggle to get treatment (my GPs wanted to know about my relationship with my boyfriend/husband, suggested I lose a third of my fairly normal body weight and never once did a physical exam of my knee joints) and now it’s a struggle to get pain management.
GPs are obliged to follow guidelines from the National Institute for Health and Care Excellence (Nice) so medication that is doing a fair job of getting rid of pain suddenly disappears or becomes restricted due to concerns about addiction and misuse – and patients are almost never consulted or informed.
I largely feel let down by the system: I am not heard by my GP who worries more about Nice guidelines than my concerns. The Covid situation has meant that my local hospital simply cancelled all its followup appointments for joint replacement, without explaining by letter, or rescheduling them. Covid kills, of course, but so does immobility, joint failure and all the other attendant difficulties that osteoarthritis sufferers will face.
Chronic pain – wherever it comes from – is something that desperately needs a great deal more attention. I hope that this is the beginning of a campaign to raise awareness and prompt action. We need more pain clinics, more training for GPs, more interest from big pharma companies in chronic conditions and pain relief, and most likely more cash invested in the NHS for the management of pain.
Name and address supplied
It’s so good to have a really clear picture of what migraine is like for so many (‘I usually end up calling an ambulance’: why migraine pain is not just a bad headache, 1 July). So much of what was said reflects my reality and, I expect, many others’. I’ve never been to hospital with a migraine, but had a doctor come out to me before I was diagnosed and she gave me painkillers and anti-emetics, which I promptly threw up. Dominic Littlewood did a series where he accompanied paramedics in America and someone called the paramedics because they had a migraine. Littlewood spent a good while moaning about people calling the ambulance when they “just had a headache”. The woman was actually found to have had a stroke but even so Littlewood’s attitude sums up that of many people; there is an expectation that you can carry on a normal life and the headache will go away.
I’ve also suddenly been refused a prescription for triptans by my GP with no explanation. I had just started a new job and without triptans I knew it wouldn’t be viable for me. The GP made me feel like a drug addict when I pleaded with them to give me the prescription.
I retired from work early because trying to work in a permanent position when you can have frequent, unpredictable absences is impossible. I’m a nurse and I love my job. I currently work at a bank so I can choose when I work to some extent, but it doesn’t guarantee I’ll be fit on the day. The exhaustion impacts me far more now than when I was younger.
Name and address supplied
With an alarming rise in young adults suffering chronic pain (Report, 27 June), increased pressure is placed on the sparse specialist NHS rheumatological services that assess and manage young people through both inflammatory (eg childhood onset arthritis, ankylosing spondylitis) and non inflammatory (eg chronic widespread pain/fibromyalgia) conditions.
More than 10 years have passed since the British Society for Rheumatology and the Arthritis and Musculoskeletal Alliance published the UK Standards of Care workforce figure ofone paediatric consultant per 200,000 child/young person population in 2010.
Today, according to BSR’s latest 2021 workforce data, many nations and regions fall short of this conservative estimate of need. In Wales, the recent Welsh Health Specialised Services Committee draft service specification included only one paediatric rheumatologist for a population of more than three million.
Adolescent and young people with rheumatic disease are relatively invisible in both adult and young person settings, and a priority in neither. To ensure equity in access to rheumatic disease services, the rheumatology workforce must be able to confidently deliver developmentally appropriate care across paediatric and adult settings. This will be a challenge for future workforce planning and any national NHS workforce strategy on the new health secretary’s agenda.
Dr Jacqui Clinch
Consultant paediatric rheumatologist and vice-president of the British Society for Rheumatology