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Redesigning How We Work With Pain

Karen Cox, Our clinical lead for Rheumatology and Persistent Pain service, took some time to talk to us about how the pain service has changed over the last 3 years and the challenge of continuing to run the service during COVID.  While the rest of the service reduced its activity to see only urgent and essential work, so that staff could be redeployed to the front lines, the pain service continued to deliver it’s vital function in the healthcare system virtually, while also redesigning how serve patients experiencing long term pain.  One of the most significant changes to the service has been the introduction of psychologists to the team, which means that we are now better able to support patients experiencing a link between their emotional wellbeing and their physical pain.

The ‘Pain Redesign’ project was a system wide piece of work which began over three years ago.  It all began with an immersion group made up of patients, nurses, consultants and advanced practitioners, who started by looking at what a pain service might look at.  I was fortunate enough to be ‘airlifted’ into the service subsequently to take those conversations and deliver what they had envisioned.

Over the last three years the pain service has changed hugely in that it was initially a very small service with less than 2 whole time equivalents (WTE) holding down the fort.  Really what we were doing at that stage was seeing and assessing new patients and then signposting patients on to our secondary care providers.

Over a period of three years we have recruited a more multi-disciplinary team (MDT).  We are evidence based and we currently have AP’s with physiotherapy and osteopathy practice, we have clinical pain practitioners, nurses, pharmacists and even more exciting, is our recent addition to team, our pain psychologists.  Having pain psychologists in the services has made a significant difference to what we can offer in the community service.  We’ve gone from 2WTE to 15 members of the team.  Most of those have been employed since February so that has been a challenge in itself.  Trying to give people a good quality induction to the service during COVID has been a challenge.  It has been a period where there have been fewer people around and you can’t sit next to each other in the same way we used to.

How did you find working in the service during lockdown?

If you spoke to new members of staff they would probably say they have felt quite isolated over this period.  I think it’s understandable as we all felt a little isolated during lockdown.  We are so used to being a small cohesive team and we rely on that interaction with each other.  One of the ways we have tried to change this is to run clinics alongside each other, so we can speak to each other in between appointments, get advice and offer support.  We have also hosted an away day, socially distanced of course, where we went up to Ditchling Beacon for a walk.  For some of us it was the first time we had met ‘in person’.  Being able to work well together and support each other is important to being able to continue to deliver compassionate healthcare.

I’ve done telephone clinics now for over a year giving patients options and choice and trying to make the service as accessible as possible for all.  Speaking to some clinicians it has gotten easier as we have gone along and we have found that routine and set expectations better at the beginning of the appointment about what this time can be best used for, and how long that usually takes.  Having said that coming to the end of it 5 months on, I think most people are feeling telephone and screen fatigue and we would all like to be able to see patients face to face as much as is safe to do so. 

What we are able to offer now if more than just a first assessment, we can offer talking therapies and we still offer groups.  They may look a little differently as so much of it is done virtually but for many of our patients who are in significant, long term pain, it has made it easier to access advice and treatment.  Personally I have been doing telephone consultations long before COVID for this very reason.  Many of our patients experience blockages which can prevent them from being able to access care.  Fatigue, finances and anxiety are very real challenges when you live with significant pain on a daily basis.  Sussex is a huge area and even in a community service it can be a few bus rides away and that can be insurmountable.

Accessibility is something that I feel very passionately about and I am doing work with two GP’s at the moment, one in Brighton and one in Crawley, looking at accessibility for patients.  In the past I think some clinicians have been understandably nervous about offering telephone assessments, so in a way this has shown how much we can offer patients when we don’t have a choice to see them face to face.  The reason we started looking at accessibility was that just at the start of lockdown one of those GP’s contacted me as they had done an audit which showed that there was a cohort of patients who weren’t accessing them at all, just in one specific part of Brighton.  I think as an MSK service we are good at supporting people, but we still need to get better.   

How important is the link between emotional wellbeing and people’s experience of Pain?

Hugely, when a lot of patients who come to the pain clinic they rarely mention pain, and often if they do mention pain it is emotional pain rather than physical pain.  What is really rewarding about working with pain, is when you are speaking to someone about their pain and discomfort over the years, and then suddenly the penny drops, and they realise that the thing thy have been carrying has had a big impact on how they feel physically.  It’s extraordinary the affect that emotional pain can have on someone’s body. 

If you think about it on a day to day basis, when you’re stressed, as human beings we naturally carry everything in our upper body.  Stress is carried in our necks, shoulders, heads, even squinting with our eyes or frowning.  If that stress carries on, it builds up.  Often people who are experiencing pain are key figures in their families or friendship group, they take on everyone else’s problems.  Usually when a crisis happens in a family there is often one person who steps up to help, and if that is to the detriment of their own wellbeing then it can take root in their body. In some of our pain groups I will refer to them as my yes people, because they are the people who always say yes when someone needs help.

What gives you the most satisfaction about the work that you do?

Getting feedback from my team is hugely rewarding.  I have a fantastic team around me and whenever I get to spend the day with them I feel like it is a rewarding experience even if it is just through email or instant messenger. 

I also find a lot of meaning in watching that penny drop moment with a patient, when you see something small shift that means that a patient will be able to manage their pain better.  It gives me that very real feeling that I am a nurse and I am doing what I set out to do which is help people and make a difference in someone’s life.

For further resources about persistent pain and our service click here.

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