St Emlyn's guest post - Working in Emergency Medicine with Rheumatoid Arthritis
Emergency Medicine is an active and energetic specialty, requires you to be on your toes, both physically and mentally, and is full of young and inspired people. Junior doctors are drawn in by the excitement, the unpredictability and the wide variation of obstacles that we face within a single shift. We look up to the more seasoned registrars and consultants, all from different backgrounds, who are mostly still enjoying what they do and are keen to pass on their knowledge and enthusiasm.
Amongst these aspects of our training there can be, at times, less enjoyable experiences. Long and alternating shifts, witnessing death and dying, difficult conversations with patients and relatives, and the physical strain on our bodies are also what we are signing up for. We are warned a lot about burnout and advised to go on holiday whenever we get annual leave, but really is this possible for most of us? Those of us with children, elderly parents, no savings, or medical problems cannot always do that freely. Annual Leave cannot be the only time we self-care. We all start new jobs with determination, confidence and enthusiasm, but life gets in the way and can often lead to us feeling demoralised and far from refreshed. Add in a chronic illness and it can make the aspirations of successful training seem, or actually be, pretty unachievable.
I have Rheumatoid Arthritis. I have always been rheumatoid factor negative with preserved bone formation, and have severe pain and swelling affecting most of my joints, most of the time. I was given a JIA diagnosis at the age of 4, which stuck with me until I moved to medical school and symptoms progressed and so it was reclassified. Now I am 28 years old, have exhausted all the licensed (and unlicensed but individually funded) biologic therapies. Methotrexate has been on my prescription list since childhood and I have been taking prednisolone since 2003, resulting in secondary adrenal failure and osteopenia, which led to a bone graft and metal work in my wrist, and this year a new development of Cushing’s syndrome.
Aside from the trauma and the acute issues we see as emergency physicians we frequently look after patients who have many chronic illnesses. Often I see patients who come into the department with exacerbations of these issues, or increased pain and reduced mobility of their chronic pancreatitis, arthritis or fibromyalgia. Part of me enjoys seeing these people because I understand what they are going through, I have been there and I also know I cannot fix them. So I talk to them (alongside giving some analgesia), I do not tell them why I understand, but I empathise and try to help them feel better. This is very rewarding for me and does occasionally seem to have a positive effect.
I decided that I wanted to be a doctor when I was 8 years old and had always enjoyed the time I spent in hospital. I never waivered from this decision and I worked hard to achieve my GCSEs and A Levels with one goal in sight: medical school. Five years there, two foundation years in South London, and I decided EM was the path that would be right for me. With the thoughts of excitement and unpredictability, trauma, variety of presenting complaints, excellent opportunity for team work and working with all specialties, I made the move to Virchester to be a Clinical Fellow and started to build my CV for the career ahead of me.
For the past 20 years family and friends have witnessed my determination and some success, and it is how I have presented myself to others and on paper. Fortunately or unfortunately, I can be good at hiding things and I am incredibly stubborn. The reality of my life and what is happening internally is vastly different.
I managed 18 months of full time work in the Emergency Department, albeit with a few days here and there for sickness, before one morning in April this year I woke up and I couldn’t get out of bed. That was the start of a month being house and wheelchair-bound.
For 2 weeks I couldn’t walk at all; the next month I was able to get out when taken in a rented wheelchair. By this point I was very low in mood due to boredom, frustration, pain, and constant worry about letting people down at work. This was the point when I realised why so many chronic illness patients suffer with depression, or are alcohol or drug dependent. So I decided to take matters in to my own hands and looked into what I could do myself to change my situation.
After addressing the more immediate issues, I looked at my career path. It took for me to be this unwell to realise that the Emergency department is not the most suitable place for me to work. After nearly 12 weeks off (half at home and half non-clinical work in the department, for the sake of my sanity!) slowly I phased back to clinical work and it was really tough. I had forgotten how draining, how physically demanding and how hard a single shift is in the Emergency Department for us all. Even for the well and able, I think we take it for granted.
It was suggested that I could sit in minor injuries, work with a support worker and see the ambulatory patients, meaning I wouldn’t have to get up as much. To me though, that’s not who I am. I was desperate to be back in Resus, be treated like a ‘normal’ person again and do what I signed up to do, just like the rest of you.
Needing 12 weeks off work was partly down to the physical logistics of me getting around. Our department is completely unsuitable for someone using a wheelchair or crutches (that may not be the case everywhere) and what is required of a fully functioning junior emergency physician just was not possible for me.
I couldn’t do CPR, I could only cannulate if I was sitting on a chair, I couldn’t do most practical procedures or help patients physically, and standing in awkward places to assess them and write notes left me exhausted. Therefore when faced with patient volume and time pressures, I was very inefficient and felt worse about myself and my own (lack of) abilities.
If you look at the average age of staff in your ED, it is probably young. Fitness and activity levels are likely to be high, determination and drive is rife and a lot of people have a similar outlook and flavour for life. I have all of those thoughts and motivations but often cannot execute them, and that is a tough pill to swallow.
Do I work part-time through EM training and take nearly 15 years to strive to be a consultant in my mid-forties? Do I settle for working as a locum or a staff grade in order to remain in an ED? Do I risk having extensive periods of time off work when my disease doesn’t allow me to stay active and well, letting colleagues down on the training rota, and others in the department?
I have had world-class care and I have also had some poor care, and these experiences are what help me to be a good doctor to my patients. With this in mind, I have created a supportive and educational website and social media page, Rheum For Improvement. It is a positive, evidence-based platform that aims to inspire and encourage everyone to make the most of life through hobbies, wellbeing and knowledge of health and food. When I was told there was nothing more that could be done for my Arthritis something clicked inside me, and I researched everything I could that had the potential to make a difference. My findings are what has helped Rheum For Improvement become more than an idea and whether you have a chronic illness or not, there is something there for everyone.
4 months later I am back at work, on the least medication I have been on for decades (albeit a high dose of steroid!), exercising more frequently than ever, and I am really happy. I truly believe this is down to working on my mental health and changing certain other aspects of my diet and lifestyle. Rheum For Improvement shares these experiences and I hope that through my website we can all learn something for ourselves, and further help our patients and colleagues.
Can EM training adapt?
So how does EM need to change in order to embrace the needs of people like me? Doctors often have a preconceived idea of patients with chronic illnesses and I want to help change this attitude. Equally in the work place, is it possible to accommodate someone who may not always have the capacity or the physical capabilities of the desired EM trainee? Adapting a workplace for a member of staff, when such a high proportion of your patients have physical limitations should be simple in theory, but I don’t think that is enough in this specialty. Whose responsibility is it to make these adaptions anyway – the trust because I work there, the deanery because they gave me the job, or me personally because I chose this path? Do EM consultants reach the top because they have been the fittest, the strongest, and the most resilient? Or do the doctors with illness or difficult life-situations filter out along the way? A few of my consultant colleagues and I all agree that it is likely to be the latter, and this is a problem.
None of these questions are easy to answer and considering a change in specialty is incredibly difficult. I have been told that it is quite novel to love your job, and I am blessed with that. Emergency Medicine is a unique specialty and those that are able to do it are very fortunate. I don’t feel I am giving up or admitting defeat, and I hope that when I apply for my chosen alternative specialty in a few months, I can show them the same commitment and enthusiasm that I have done for emergency medicine. There are lots of questions from this post that I hope will spark some debate so I hope to write a follow-up post on Rheum For Improvement to discuss things further.
As for Emergency Medicine, it will always have a special place in my heart. There really is not much else like it!
Footnote from Simon – Harriet’s career in EM has been fantastic and she clearly has the talent, aptitude and ability to be a fine emergency physician but that probably won’t happen as a result of an inability of the system to adapt to the needs of a trainee with chronic physical health problems. In my work as an Associate Dean for HEE I often deal with trainees who are struggling with illness and in general we do a reasonably good job in supporting adaptation. However, illness constitutes a range of conditions and adaptations are complex and should be bespoke. Many young trainees are physically well and thus mental health issues seem to predominate.
We are getting better at supporting trainees with mental health issues (but there is still much work to be done). In contrast I don’t see anywhere near the same number of trainees with physical limitations such as those Harriet describes. Our training programs and hospitals are (in my opinion – and I’m not speaking on behalf of HEE) less well equipped to deal with the longer term, relapsing physical challenges a trainee may face.
Harriet’s experiences have made me really reflect on who gets into EM, who stays in it and whether there is more we could do to support others with similar experiences. If we are losing good people then what can we do differently? Harriet’s story, and I know there are others, has made me really stop and think about what we can and should do. I hope it makes you stop and think too.
This post can be found on the St emlyn's website here