Our history, your future - Ashish Patel

As RCPCH celebrates its 25th birthday, 25 members have shared stories about a case that stayed with them. These stories will be published throughout 2021.
Picture of Dr Ashish Patel
Dr Ashish Patel

The regular rotation of posts in paediatric training means that we rarely get the opportunity to follow the care of a long-term patient. Prior to this placement, I found the prospect of managing children with medical complexities (CMiC) quite daunting. Training focuses on the acute management of patients but having to work with a family over a number of years, sometimes until transition of care to adult services, is something rarely experienced by trainees.

I looked after a young boy* left with severe brain injury from TB meningitis. A rare and challenging diagnosis to make, I came to meet this family after the acute events. Their lives had been turned upside down. Their boy who was fit and well a few weeks ago was now unable to walk, talk or feed himself. The long term outcomes were unclear and there was a long journey of neurorehabilitation ahead of them. 

What became apparent the more time we spent with the family were the complex social problems in the background. The family had only recently moved to the country. They had no idea of the workings of the NHS

I was in the room the day the consultant looking after the child broke the news to the family. It was a difficult conversation to have, with the added challenge of a language and cultural barrier. Even with the interpreter, they struggled to comprehend the severity of the brain injury and the likelihood that their boy would never be the same as before. On reflection, it is now clear they were not ready to hear this information at that time. It took many months and regular multidisciplinary team meetings for this message to sink in.

Over the following months I grew fond of this boy. With the ongoing treatment of his TB meningitis and regular neurorehabilitation, he showed small signs of neurological improvement. What became apparent the more time we spent with the family were the complex social problems in the background. The family had only recently moved to the country. They had no idea of the workings of the NHS, and this was complicated even more with the COVID-19 restrictions. The process of having to clarify that the family were even entitled to healthcare in this country was a new concept to me. It meant that we could not proceed forward with referrals for equipment and community support until we had confirmation of their immigration status. With their lack of understanding of our social care system, we supported them to navigate the complex forms and processes to obtain benefits and get themselves on the housing ladder. Whilst the priority was managing the child medically, without sorting the long-term community aspects, we would never have been able to get the boy home in the end. Parallel planning was vital.

This case provided me with invaluable learning opportunities. It reiterated the importance of communication and teamwork.

Understanding the family’s culture came to be a big part of managing the boy’s care. We learnt quickly to speak with both parents as the mother would not be able to make a decision without the father, the ‘head’ of the family. Biting a child to terminate a seizure seems an absurd thing to do but this was found to be common practice in their home country. One of the saddest days was finding out the family were starving at home. With the benefits process taking so long, the family had little money. They did not tell us for months and was it was only found by chance on visiting the home. Charity funds and food parcels were provided in secret to not damage the father’s pride, who felt responsible for providing for his family. It was eye-opening to realise how much culture could impact their interaction with health care. 

This case provided me with invaluable learning opportunities. It reiterated the importance of communication and teamwork. We had multidisciplinary team meetings every few weeks with the professionals and the family which really helped to coordinate the care and make headway on the social barriers we were facing. The pandemic has demonstrated how easy it is for multiple teams and services to meet virtually and this proved paramount for this case. We were fortunate to be supported by our CMiC team who were absolute stars in coordinating the holistic care of this boy (I showed my appreciation with cake!).

The other learning for me was an awareness of how language and culture can affect care. A consistent interpreter proved fundamental. They not only supported the professionals but the family as well. We should be talking to families in their first language wherever possible, both in written and verbal communication. Cultural differences can feel like a barrier to consultations but being curious and understanding more about a family’s culture can really help to drive their child’s care forward and build stronger family-doctor relationships.


Ash is a paediatric ST7 GRID nephrology trainee based at Birmingham Children’s Hospital. His interests include simulation-based education, championing for less than full time training and the wellbeing of his local trainees, and of course baking. Check out ‘Ash’s Baking School’ in the Milestones magazine.

  • *Names and other information that could identify someone have been changed.