This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Benjamin talks about why we need a radical shift in how we view and treat people with chronic pain and how over-investigation and over-treatment compromise patient safety. He also talks about the power of communal singing for people with long-term conditions and what wild swimming has taught him about supporting people living with chronic pain.
About the Author
Benjamin is a consultant rheumatologist and clinical director for outpatient transformation at Imperial College Healthcare NHS Trust, and since 2010 he has combined clinical work with his role as senior clinical policy advisor to Versus Arthritis. In 2008, he undertook a two-year secondment to work as both clinical advisor to the England Chief Medical Officer and programme manager at WHO Patient Safety, and subsequently completed his master of public health degree at John’s Hopkins. His interests include promoting a public health approach to musculoskeletal health, improving the extent and quality of musculoskeletal health data and developing systems to support self-management for people with long-term conditions.
Questions & Answers
Hi Benjamin! Please can you tell us who you are and what you do?
I’m Benjamin Ellis, a consultant rheumatologist. I work half my week at Imperial College Healthcare as both a rheumatologist and the Clinical Director for Outpatient Transformation. The other half of my week is spent working for Versus Arthritis, the national charity working with and for people with arthritis. I also have an interest in public health and chair the Faculty of Public Health Special Interest Group on Musculoskeletal Health. I’m particularly interested in the public health issues surrounding chronic pain, and how an approach based on population health management and personalisation of care can support people to manage their pain. Linked to this I have a role at North West London Integrated Care System (ICS) as their Musculoskeletal Personalisation Lead.
How did you first become interested in patient safety and chronic pain?
My interest in quality and safety and my interest in chronic pain both stem from my time working for Sir Liam Donaldson when he was England’s Chief Medical Officer and Chair of the World Health Organization Patient Safety Programme.
In this role, I led on completing the International Curriculum Guide for Patient Safety, which others had begun working on before I started. The biggest lesson I learned from that experience was the importance of involving people from different disciplines early, to make a truly multiprofessional guide. When you want people to buy into your work, you need to make sure they’re engaged from the start.
While I was working for Sir Liam, he also asked me to help write a chapter on chronic pain for his 2008 Annual Report. This really sparked my interest in the policy and public health aspects of chronic pain. My initial recommendations called for a vast expansion in pain clinics – but a senior pain specialist who I discussed this with helped me see that this medical-model approach was unhelpful.
Instead, people with chronic pain need an approach that helps them identify their most pressing needs and goals, then offers ongoing supportive care (based in their neighbourhood and communities) to help them achieve these. Sir Liam and this pain specialist transformed my thinking about the nature of chronic pain, the support people need and how medicalised systems can cause harm as well as good.
Which part of your role do you find the most fulfilling?
I’m hugely excited about our work transforming our approach to people with chronic pain in North West London. If we crack it, it will be transformative for people who are living and struggling with chronic pain.
It could also really help clinicians who provide care for people with chronic pain. Most of us have had very difficult conversations about chronic pain that result in both the patient and clinician becoming frustrated and upset, or even angry. And distressed doctors are not in a great place to ensure patient safety.
So, if we can all learn to have different kinds of conversations that create time for people with chronic pain to speak and be heard, it will put clinicians in a better place to deliver high quality care for all their patients.
How has your view of chronic pain changed during your career?
There is a view that all pain must have a neat biological, pathological cause – if we could just find it and reverse it, then we could treat it. I think most of the public think this about chronic pain, and many clinicians too. I certainly used to think that people with chronic pain simply needed more doctors, more tests, more medicines – and then all would be well. My growing realisation was that not only is this medical model often unhelpful, but that it also causes many harms.
Of course, sometimes there are strong biological components to pain, for example in conditions like rheumatoid arthritis and osteoarthritis, where there is damage or inflammation in and around the joint. But very often the experience and severity of chronic pain cannot be explained in this way.
All pain is produced by our central nervous system to warn us of danger, so we can keep ourselves safe by getting away from the threat. But chronic pain isn’t useful to people that have it because there isn’t something to get away from. Worse still, chronic pain can stop us doing things that would help our symptoms, such as being more physically active.
Chronic pain is very complex and is affected by a huge number of factors. For example, traumatic life experiences (especially early in life), stress, illness and injury can put our central nervous system on high alert, leading it to produce pain out of proportion to any problems in our joints, or even when there is no damage of inflammation in the joints whatsoever. This is thought to happen in conditions like fibromyalgia.
What patient safety challenges do you see at the moment?
We really need to better understand the issue of quaternary prevention. This means protecting people from medical harm, including reducing over-investigation and over-medication.
For example, many people believe that back pain is usually caused by a structural problem in the back. Yet data from large studies show that this is not usually the case, any more than headaches are caused by structural problems in the head. The age-related changes that are seen on MRI scans of the spine are common, and people with back pain are no more likely to have these than people who are pain-free.
While that might make scans unnecessary for most people, there is also evidence that if you have an MRI for your back pain, this can worsen your back pain! The thinking is that scans focus people on structural changes in the back, increasing worry (hypervigilance). And when your central nervous system is on high alert it just worsens chronic pain, feeding this vicious cycle.
Quaternary prevention is also about reducing inappropriate treatments. Medicines such as opioids and gabapentinoids can have a role in treating some forms of pain in some people. Generally, these powerful, dependence-forming medicines (with significant side effects) are not suitable. They are often prescribed inappropriately, and without people understanding the risks. This isn’t about trying to demonise medicines. It’s more about recognising that in many cases for people with chronic pain, the harm is much greater than the good.
The third safety issue is the harm of lost opportunity – when by focusing on a medical approach we neglect other avenues that could be helpful to people with chronic pain. When clinicians speak with patients only about medicines, then we displace a more meaningful and useful conversation. This should include both those things that the person can do for themselves, and the help and support that professionals and services can offer. Having better conversations will allow us to better allocate precious health and care resources, offering more personalised support, and supporting the person with chronic pain to make the changes they need to live the life they want to lead.
What do you think the next few years hold for how we deal with chronic pain in the NHS?
The recent NICE guideline on chronic pain (NG193) really tried to move the focus away from the medical model to more person-centred care. We’re also expecting that NICE will soon publish a Patient Decision Aid linked to this guideline that will help people with chronic pain make informed decisions about this aspect of their health.
There have been concerns that the NICE chronic pain guideline suggests clinicians force people with chronic pain to come off medicines they already take, even against their will. But the guideline is very clear that this should not be happening, unless as part of a shared decision between patient and clinician.
Generally, we need to move away from prescribing medications and injections when the risk/benefit analysis is strongly weighted towards risk. I’m also concerned about the lack of shared decision making that routinely happens in conversations about chronic pain—decisions need to be truly owned by the patient.
We also need to get better at proactively identifying people with ‘high-impact chronic pain’ – this is chronic pain associated with high levels of disability. We need to provide the right training and support to clinical teams so they can in turn support people with chronic pain. But as well as practitioners equipped with the skills they need to do their job confidently and well, there must be services that acknowledge and ‘own’ their role in supporting people with chronic pain.
In North West London we’ve been testing whether a model of care like this can be delivered by primary care teams led by a GP, with support delivered by a range of staff including new types of roles such as ‘health and wellbeing coaches’ and ‘social prescribing link workers’. Primary care teams have received additional training and are supported by a specialist multidisciplinary team (including rheumatology, health psychology and physiotherapy) to discuss cases where needed. We’re finding that both patients and clinicians are welcoming this new approach, which seems a much safer and better alternative to care than endless, vicious cycles of referrals, long waits, investigations and all-too-often unhelpful medicines.
I’m not saying we’ve solved all the issues people with chronic pain face, but it does feel like movement in the right direction. We’re seeing pockets of exciting initiatives like this all around the country. It’s not that we need a single top-down approach with lots of central direction. But it probably would be helpful to create some sort of community of practice, bringing together teams who are doing things differently, along with people with chronic pain, so that we can learn from and inspire one another.
What could this change in perspective mean for patients?
On the whole, our healthcare system does not work well for people with chronic pain.
All too often, people do not get a chance to share the whole story of their journey with chronic pain with their GP and primary care team. Resource constraints and traditional ways of working mean that people are more likely to leave a hurried appointment with an unhelpful prescription, a plan for more tests, or (yet another) referral; rather than leaving feeling heard, with a modern explanation of how and why chronic pain is generated by the central nervous system, and what approaches might be helpful for this.
Even when people do identify their own needs and preferences, they can be batted around a system that does not meet their needs. I’ve heard examples of people with chronic pain seeing a mental health practitioner, after they’ve agreed with their GP that improving their mental health is their first priority to help them live better with their chronic pain. Then they are told their mental health issue is caused by their chronic pain, so they need to go back to see their GP to ‘sort out’ the chronic pain. These cycles of frustration and despair just ramp up the central nervous system, which in turn makes the chronic pain worse.
All of this also requires a shift in societal attitudes too. I think a lot of people with chronic pain currently feel fobbed off if they’re not offered investigations, treatments, referrals to ‘find out the cause’ of their chronic pain, and to ‘treat it’. If we really want to rethink how we approach people with chronic pain, then it won’t be enough to change the views of clinicians and improve their skills, or to improve the quality of (and access to) health and care systems; but we’ll have to change society’s understandings of chronic pain, and expectations about what is likely to be helpful. It’s a tall order, but it’s possible. What’s seems clear to me is that it won’t happen by accident – it’s going to need to concerted effort led by people that really understand how to deliver complex health promotion messages in a sustained way.
Are there things you do outside of work that make you think differently about patient safety?
Outside of work, I sing in a choir, which I love! I don’t live with chronic pain myself, but there are studies that show that singing has a positive impact on chronic pain and long-term health conditions. There may be many reasons for this including the fact that singing involves listening, concentrating and regulating your breathing. It also fosters community connection, which is really important. I recently contributed to an article for Church Times (though I’m not Christian myself!) about how singing can help people with chronic pain.
Although I’m not very athletic I also enjoy swimming and last summer took part in a wild swimming group. They assigned us to groups, and I ended up being the slowest swimmer in the ‘fast group’.
At one point I noticed that there was an older man in the ‘slow group’ who was quite far behind the rest of his fellow swimmers, so I decided to go and swim with him for half an hour. I loved swimming with him, and he gave me a big high-five at the end! The experience made me think about how much of leadership is about being with people and supporting them, alongside them – not being at the front.
Consultations about chronic pain are all too often about whether and how doctors can fix the problem and make the pain go away. Over time, I’ve learnt that what people with chronic pain want and need is someone to ‘swim with them’—just be with them, listen and non-judgmentally acknowledge that their pain is real and affecting their lives, and help them discover and express their needs, preferences and priorities for support.
In medicine we’ve often forgotten the importance of that message. Well-intentioned initiatives like the Quality and Outcomes Framework (QOF) and payment by results (PBR) have also driven a very transactional kind of medicine, and it’s not clear what the benefits have been.
This transactional, reductionist approach has taken away what people need, and replaced relationships with targets and tick-boxes. By driving unnecessary and unhelpful investigations and treatment, it may have made care less effective and more unsafe.
For many patients (perhaps more than we think) we need to look away from our screens, put prescriptions and referrals to one side, and listen—really listen. We need to care, rather than provide care. And rather than trying to ‘fix’ people with chronic pain, we can instead steadily swim alongside, giving people the support they need.