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Nurses in persistent pain can thrive if they have a supportive manager, but lack of understanding in the workplace can make them feel a burden
One estimate of the number of people in the UK living with chronic pain suggests up to half the population may be affected. Another study, from the Public Health England (PHE), found more than one third of respondents had some level of chronic pain. More women (38%) than men (30%) said they had chronic pain, and the risk increased with age. PHE found that almost 40% of people aged 45-54 years are affected, compared with 18% of those aged 16 to 34 years.
Nursing Management. 29, 2, 7-9. doi: 10.7748/nm.29.2.7.s2
Published: 07 April 2022
Chronic pain is likely to be common among nurses, given that women make up the vast majority of the nursing workforce and, according to the RCN 2021 Employment Survey, almost 70% of nursing staff are aged between 45 and 64 years.
‘If I mention I’m struggling, my colleagues and manager think it’s like them tweaking their back or recovering from exercise. They don’t understand that I spend my life in pain’
RCN peer support network member
PHE defines chronic pain as pain for a period of 12 weeks or more, and describes it as a complex and distressing condition. It has a significant impact on people’s lives and is associated with several negative outcomes including depression, reduced quality of life and job loss.
RCN peer support service officer Holly Chadd says chronic pain – also referred to as persistent pain – is a common complaint among members who join the college’s peer support network.
Causes are varied and sometimes undetermined, but may be related to conditions such as arthritis, Ehlers-Danlos syndrome or fibromyalgia.
‘But then we also get people joining because of chronic pain, but who don’t reference any other condition. They’re simply seeking support.’
Chronic pain is often referred to as an invisible disability, Ms Chadd says. ‘You can’t tell just by looking at someone that they’re experiencing it.’
This can present a significant challenge for some nurses living with pain, she explains.
‘They might need breaks to get up and move around if they’re desk-based, they might need special chairs or equipment, or they might struggle to do certain procedures in the standard way.
‘But because it’s not obvious to those around them, their colleagues in particular, that they are in pain, they find they have to remind people about what they need and why they need it. That adds a level of stress and makes them feel burdensome, whereas actually, when they have the right support, they are valuable team members and have a lot to bring to the profession.’
12+ weeks
Period used to define people with chronic pain
Source: Public Health England (2017)
2010
The Equality Act is published. This states that employers must make ‘reasonable adjustments’ for staff with disabilities or health conditions
Sources: Equality Act 2010 and Gov.UK
One RCN peer support network member, who asked to remain anonymous, says those she works with have little understanding of how she is affected by persistent pain.
She has irritable bowel disorder and an ileostomy, as well as fibromyalgia, degeneration of the spine and steroid-induced diabetes. Despite her health problems, she works as a nurse manager, doing long shifts and a lot of ‘fire-fighting’.
‘I hide my pain, even when I’m in agony,’ she says. ‘I feel if I do mention I’m struggling, my colleagues and manager think it’s like them tweaking their back or recovering from exercise.
‘They don’t understand that I spend my life in pain and that by the time I mention I’m in pain and struggling, I have hit the wall and run out of pain relief options. Taking a five-minute break just won’t fix things.’
‘Find out what it is like for that member of staff who is experiencing chronic pain, then work with them to find a way for them to carry on in their job and career’
Psychologist and senior lecturer Karen Rodham
She uses an ergonomic chair at work, but it broke and although she struggled on for a few days, eventually she could not cope without it. The response from her employer was not helpful.
‘It was as if I was in the wrong and it was up to me to remedy the situation and find a way to work.’
The 2010 Equality Act says employers must make ‘reasonable adjustments’ for staff with disabilities or health conditions. Adjustments may include changing equipment so the person can continue in their role.
The psychological impact of persistent pain can also be debilitating. Ms Chadd says stress, anxiety and depression are often mentioned by peer support network members as occurring alongside chronic pain.
‘The work element adds stress because of constantly having to make sure you’ve got what you need – constantly having to have those conversations,’ she says.
Although nurses with chronic pain who find the right job and who have a supportive manager can do well at work, if support is not forthcoming ‘it becomes very stressful and anxiety-provoking’.
Ms Chadd believes most nurse managers want to help staff members who experience chronic pain.
But with everyone in healthcare working under intense pressure, some nurses feel they are pushed out of roles because managers find it difficult to make the reasonable adjustments the law requires. And in the context of safe staffing, that may mean healthcare services loses experienced nurses.
Elizabeth, an anaesthetic nurse, describes her experience of fibromyalgia
‘Before I was diagnosed with fibromyalgia, I was an active mum, partner, daughter, sister, aunt and nurse. I worked full-time and looked after my family and mother.
‘Challenges I encountered during my diagnosis journey included years of being told I had osteoarthritis, then that I was peri-menopausal. GPs weren’t interested and I had time off work sick due to pain and/or anxiety.
‘Eventually a locum GP referred me to a rheumatologist who, in the absence of abnormal blood results, confirmed my diagnosis of fibromyalgia.
‘Initially it was a relief, which quickly turned into a nightmare. I was put on the medications merry-go-round and at one stage feared I’d have to give up my profession as an anaesthetic nurse.
Research into medication
‘My role involves drawing up dangerous drugs, assisting anaesthetists and maybe doing cardiopulmonary resuscitation as soon as I start duty. The drugs made me feel like a zombie, but my GP was dismissive.
‘I was left with no option other than to find my own way through this minefield, doing my own research on medication and requesting it from my GP.
‘My work has made reasonable adjustments to enable me to remain at work, now part-time. I spend most of my days off dossing around my house. I’ve learned to pace myself or pay for it later.
‘It’s like my life has been taken away from me – the life I had before this illness overtook. I now need to learn to live as well as much as this debilitating condition permits and try to not let my condition beat me.’
Ms Chadd refers to the RCN’s Health Ability Passport Guidance, which suggests ways managers and staff can have open and honest discussions about disability-related needs.
Psychologist Karen Rodham, a Staffordshire University visiting professor and University of Chichester senior lecturer, says persistent pain may lack a clear diagnosis – and this can alter the perceptions of others toward the individual.
She cites research that found clinicians take an individual’s pain less seriously if there is a lack of clear medical evidence about the cause.
‘It’s interesting to me that even health professionals can have a negative perception of someone in persistent pain if there’s isn’t a clear explanation for what’s going on,’ says Professor Rodham.
Part of the problem is that pain cannot be measured objectively. Even the 1-10 scale, commonly used as an assessment tool, is only a guide to what the individual is experiencing at that time. And, says Professor Rodham, one person’s 5 on the pain scale may be another person’s 7.
For managers seeking to support a nurse in chronic pain the key is to be interested, willing to listen and curious ‘in a good way’, Professor Rodham suggests.
‘It means wanting to find out what it is like for that member of staff, then working with them to find a way for them to carry on in their job and career.’
For nurses with persistent pain, pacing can be key, Professor Rodham says.
In a patient leaflet produced by Live Well With Pain, pacing is described as regulating exercise and daily activity to avoid pain flare-ups and so gradually increasing what the person is able to do.
A Pain at Work toolkit developed by the University of Nottingham says pacing is an essential skill for anyone experiencing chronic pain.
‘It’s about being mindful of what works and what doesn’t work for you,’ says Professor Rodham. ‘So spread things out throughout the day if you can so you’re not in that boom-and-bust cycle.’
But sometimes a balance has to be struck, she suggests. Someone with persistent pain might choose to do something they know is going to cause a spike in their pain afterwards – attend a wedding, say, or a family function.
‘But it’s more important for you to do that thing, knowing what the payoff is.’
Another of Professor Rodham’s suggestions for managing chronic pain is, if possible, to avoid catastrophising – immediately thinking about worst-case scenarios.
‘That takes you on a cycle of negative thinking, which can increase stress. And we know stress increases the likelihood of feeling pain.’
She adds that cognitive behavioural therapy and acceptance and commitment therapy can help head off negative thought patterns.
A skill most nurses have in abundance is clear communication and for those living in persistent pain, it is one they can put to good use to help themselves.
Learning how to explain your pain and asking for what you want and need is important if you are hoping to continue in your role in spite of your pain, Professor Rodham says.
As a practising psychologist, she has experience in undertaking communication-skills training with clients to help them prepare for potentially difficult encounters, whether at work or with family and friends.
‘You need to be able to have these conversations even though they can be tiring because it comes back to you as a person with pain taking the initiative. But in the long run it might help bring people on side to work with you.’
Despite the support and interventions available for those in persistent pain, and the self-management principles, for some nurses giving up work feels like the only option. But finding ways to overcome the challenges can bring rewards.
One nursing student, a member of the RCN Peer Support network whose health problems include hypermobile Ehlers-Danlos syndrome, says: ‘At the moment, I’m struggling with pain brought on from sitting for my lectures and studying.
‘But I am loving my time in placement, which keeps me moving. The shift patterns have also been great, because it gives me more full days to dedicate to exercise, therapies or just resting in a way that I couldn’t manage with a nine-to-five.’
She adds: ‘In a strange silver lining, chronic pain has led to me building new relationships and having a different outlook on life through patient advocacy work, running support groups, working with a disability swim club and, of course, retraining as a nurse.
‘It’s also important this perspective is represented in nursing to deliver holistic care.’
Fayaz A, Croft P, Langford R et al (2016) Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies. BMJ Open. doi: 10.1136/bmjopen-2015-010364
Fibromyalgia Action UK. www.fmauk.org
Gov.UK (2022) Reasonable Adjustments for Workers with Disabilities or Health Conditions. tinyurl.com/GUK-disabled-workers
My Live Well With Pain (2020) Pacing– A Really Useful Skill for People with Pain. livewellwithpain.co.uk/wp-content/uploads/pacing.pdf
Pain Concern (2022) Pain at Work (PAW) Toolkit. painconcern.org.uk/pain-at-work-paw-toolkit
Public Health England (2020) Chronic Pain in Adults 2017: Health Survey for England. tinyurl.com/PHE-chronic-pain
RCN (2021) Health Ability Passport Guidance. tinyurl.com/RCN-health-ability-passport
RCN (2021) RCN Employment Survey 2021. tinyurl.com/RCN-employment-survey-2021
RCN (2022) RCN Peer Support Service. tinyurl.com/RCN-peer-support
Tame the Beast. tamethebeast.org
The Pain Toolkit. paintoolkit.org