In the spring of this year, I retired from my job as a paediatrician. I have been reflecting on what knowledge might have been useful to have at the start of my career rather than acquired later on, along with grey hair and reading glasses.

As a newly-appointed consultant, I thought my role was to make diagnoses and fix the patient’s problems. This seemed fine in the emergency department or on the ward but didn’t work in the context of long-term conditions. I thought I was giving sensible medical advice, so was disappointed when my recommendations weren’t taken up by the child or family and the same old issues persisted from one clinic visit to the next. I was a little perplexed by the lack of progress, particularly in children and young people (CYP) with diabetes.

 

  • Coaching

Then some years later, I attended a coaching course which gave me a completely new perspective. I started listening properly and used a coaching approach to help the CYP choose their own specific goals. Rather than problem-solving as a doctor and telling them what they ought to do, I persuaded them to come up with their own ideas instead. Predictably, the CYP were much keener to work on real life problems which mattered to them and they preferred using strategies which they had chosen themselves. For example, I might be concerned that their glucose levels were erratic  because they weren’t taking enough insulin but the goal of “good diabetes control” might not resonate with them. However, improving blood glucose levels in order to build better muscle bulk, eradicate leg cramps and play 90 minutes of good quality football could feel very worthwhile and might well motivate them to manage their diabetes better.

The coaching approach was not an instant success with everyone. Some parents seemed baffled, questioning why I was asking the child for their ideas and their solutions, when surely I just needed to Tell Them What To Do. Of course, CYP generally knew perfectly well what they ought to be doing but they struggled to do all the difficult stuff all of the time. It therefore made more sense to focus on their key issues and support them in achieving these.

At first, not everyone in the extended MDT knew about coaching. They would helpfully provide answers to questions of “What else could you try?”or “What else might be useful” I had posed to the patient. A hurried clarification had to be made, to explain this new way of conducting consultations. Silence is not easy for health professionals but as a team we learned to listen more and talk less!

 

  • Me First Communications

At first, I had a very doctor-centric view of illness and didn’t truly think about the patient or family’s perspective. I didn’t know how difficult it might be for them to voice their concerns or to challenge professional advice. Although I knew about child development, I hadn’t mastered the art of talking with teenagers or children with social communication disorder. Over the years, I adapted my consultation style by emulating colleagues who clearly did it very well. Families taught me how they juggled disease management with ‘normal’ everyday life and the hurdles they had to navigate. I saw that they needed to be recognised as individuals rather than patients with medical diagnoses.

Some of my more challenging conversations have been with parents rather than with the CYP themselves. I saw how their fear or anxiety could manifest as hostility but found that empathy and calmness were more constructive responses in these situations. As a young doctor, I was scared of angry parents but eventually understood that they simply needed time, honesty and more support.

Thankfully things have changed and effective communication is now both emphasised and taught, as exemplified by the Me First Communication model and through the work of the Me first Communication Champions network, of which I am a member. This includes advice for communicating with children who have learning difficulties or physical impairments so all healthcare professionals can benefit from this resource, rather than learning by trial and error (or not at all).

 

  • The wider team

I discovered that much useful information was gained even before the patient entered the clinic room. The clinic nurses got to know the patients well and could tell if something wasn’t quite right. They were adept at calming fractious toddlers, reassuring worried parents and engaging with reluctant teenagers. They could sense the patient’s mood, spot changes in family dynamics and pick up on unspoken tensions. Sharing this information with the team helped deliver better consultations and I came to value their input enormously.

Non-clinical volunteer staff smoothed the patient journey and helped in the waiting room by giving out feedback questionnaires and signposting families to useful websites. I feel we could have made more use of this great group of people – every clinical setting could have volunteers!

Our MDT coordinator brought organisational rigour, fresh ideas, expertise in audit and delicious fruit cake to the department. I wish I had known earlier how data collection and team dynamics could both be transformed by such an appointment.

 

  • Recognising the expertise of CYP and their families

I would definitely tell my younger self not to be judgemental of patients’ actions. I learned to be generous in my praise of patients’ self-management and to focus on the positives during consultations but wish I’d done this earlier.

Children with diabetes have an MDT review every 3 months, which equates to 2 hours in a year. In contrast they and their parents have to manage the condition 24/7, 365 days a year. As an esteemed colleague observed, most families are doing the best they can, often in challenging circumstances. They don’t need their clinic visit to feel like a daunting visit to the headmaster’s study.

Expert patients are a powerful resource, both for the healthcare team and also for patients and families. I was impressed by the young adults who offered to come back to the paediatric clinic and share their experience of growing up with diabetes. They acknowledged the frustration which led them to neglect their treatment during adolescence and wanted to help others cope better. I could have tapped into their expertise much more than I did.

 

  • Summary

So this is what I wish I’d known at the start of my career:

  1. Listen carefully to what children and families are really saying.
  2. Use a range of communication skills, as taught on Me First.
  3. Utilise and recognise the diverse skills of the whole MDT.
  4. Acknowledge and value the work done by patients and families.
  5. Utilise the skills and commitment of expert patients.

Vaseem Hakeem

October 2019