Blog

Through the Rare Project we introduce you to the people behind their rare conditions.

Rare Beauty - Anaesthesia

RB Theatre--4.jpg

Nuria is one of the paediatric anaesthetic consultants at Alder Hey Children’s Hospital.
She kindly took part in the Rare Beauty project and chatted with us about her experiences of working with patients who have rare diseases.

‘At Alder Hey we are a specialist centre and we see many patients with rare diseases and so it really almost becomes normal.

As an anaesthetist we need to know the pathology quite well before anaesthetising and whilst rare diseases bring their own challenges we are fairly used to treating people with them.   If someone has a really, really rare condition we carry out research to understand more in advance.
We often use an online resource for additional information but if the condition is not covered we would speak to colleagues who may have more experience of that particular condition.

I think it is important that there is more awareness of rare diseases because when you look at the number of people affected it is a surprisingly large percentage of the population.  In specialist hospitals like Alder Hay there is a good understanding and awareness of rare diseases but it is not necessarily the case for all hospitals.  Technology really helps people research these days though.

As an anaesthetist we often have a close relationship with families.  Whilst the surgeons tend to do all the follow ups, we see the families before the anaesthesia and after the surgery.  It is important that we work closely with the family to put a plan in place for putting the child to sleep.  Our role with pre-op assessment, in particular, is quite important because we are often dealing with emotional families who have anxieties about the surgery and the anaesthesia.  I think it is quite important to build a level of trust with the family and come up a plan that works for everyone.  For example if a child is really scared of needles we can just use a mask and ensure that is part of the plan.  We then will keep an accurate record of what we did and how it worked so that we know what worked well for that patient for the future.’

We asked Nuria how she coped with a difficult day at work and her response was truly heart-warming and really emphasised what a caring profession it really is.

‘It is quite hard to switch off after work to be honest.  I always tend to think all of my patients as if they were my family, my relative, and I ask myself what I would like for them, how I would like them to be treated.  At times when you come across really difficult and sad stories it is just hard to switch off.   I like to spend time out of work with my family, my partner, and by doing hobbies, but at times it’s very hard.  You just can’t help but put yourself in that position of the child or those parents.  It can be very hard at times.’

The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images.  We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care.  We are grateful to Alder Hey Children's Hospital for their assistance. 

If you wish to discuss this project or reproduce any images or story please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)