Supporting doctors with fluctuating chronic conditions

This anonymised account reflects the views of an individual, and not the General Medical Council.

A palliative care consultant with systemic lupus erythematosus, shares their experience of accessing reasonable adjustments over 20 years of medical practice, and what they think could be done to improve the culture of support for disabled doctors.

Adapting reasonable adjustments over time

I retired as a palliative care consultant in my early 50s on ill-health grounds after twenty years of illness, numerous flare ups and at least four major relapses. I was diagnosed with Systemic lupus erythematosus (SLE) in 1991, just after being appointed to a new senior registrar job.

My disease was particularly unstable for the first three to four years. I was helped by the supernumerary training scheme which made it possible for me to reach Certificate of Completion of Specialist Training (CCST). The specialist looking after me supported me tremendously by encouraging me to stay in work. The system did not, and seemed totally unprepared for illness in a doctor, as I found the training scheme by chance.

The next twenty years involved work, flare ups and relapses against a background of worry and uncertainty. I was continually concerned that I was hurting myself by staying in work, always hoping the next remission would last.

This is an important, if obvious point - chronic illness continues and so adaptations need to. I was encouraged to keep my illness generally quiet, except to medical managers and occupational health (OH) and found that others did not realise I had a long term condition (LTC). I’m not sure whether this approach was right or not - an illness in a colleague could be exploited.

Well-informed OH support makes a huge difference. If you feel your OH doctor does not understand your condition, ask for a second opinion.

Generally, I was well supported by human resources – I was single-handedly setting up a new department as flexible working options were limited.

In the end I decided to retire on medical advice. I had had all the treatment available and became dangerously ill. I was extremely concerned about cumulative morbidity and realised I could manage only very few sessions of intermittent work, if any and remain as well as possible.

What I would change…

  • Doctors with chronic conditions need support to ask for what is required to be as healthy and effective as possible at work.
  • Medical schools and training facilities should offer appropriate support and working patterns for people with long-term conditions enabling them to complete their training.
  • Improve policies designed to support doctors living and working with long-term conditions. Current policies don’t seem to be based on data and are often counterproductive. The problems of living with incurable relapsing and remitting conditions are particularly poorly addressed. People who work with such an illness may compromise their long-term health by taking higher doses of treatment to help them fit into a system that does not recognise this pattern of illness.
  • Improve knowledge of the practicalities of working with relapsing and remitting illnesses. Colleagues, unions, occupational health, human resources and the royal colleges know very little about this, even though they may want to help you. Health unions seem to have little expertise in helping people with lifelong illness - they do not have any specialist knowledge to help and advocate.
  • Bear in mind that pension changes and the lack of supernumerary part-time training will make life more difficult for those with relapsing and remitting illnesses. Intermittent work is treated as continuous work - people with severe relapsing and remitting conditions can only work intermittently. Part-time supernumerary training is helpful in the periods of disease instability. These changes will be most damaging for young doctors with the most severe illnesses. 
  • There are new positive changes to the Equality Act, and the whitepaper on employment and ill-health promises to help people make changes in their workload or work patterns to be compatible with their health. Sadly it will still be necessary for some to retire on ill-health grounds and this ‘lost tribe’ need help.
  • It is important to be able to shift between part time and full time work (if the system wants to retain people) with chronic illness. With decades-long chronic illness, more or less work may be possible at different times of life, such as when you have young children or if you are a single parent. More work is possible when you have more support.
  • Supra regional teams of specialist occupational health and vocational rehabilitation doctors should be available to help doctors with rarer LTCs outside the experience of standard departments. Doctors need to use the Equality Act.