Reaching out

Holding hands
By Luke Blair     28/02/2024

“This is one of my favourite patients.”

We are looking at a former musician with a degenerative disease that means they can now only move one finger. 

“They have said to me, when I don’t have any quality of life anymore, I will tell you. Until then, I have my quality of life.”

It takes a particular strength of character, dedication, and expertise, to give patients that purpose, to enable that quality of life.

My blog subject today, talking about one of her most inspiring patients, is one such nurse, specialising in mechanical ventilation outreach – that is, patients with chronic respiratory conditions whose breathing has to be assisted in some way, but who live in their own homes.

For our hospital, specialising in heart and lung diseases, this means the consultant nurse is busy. She and her multidisciplinary team of three physiotherapists and one physiologist look after nearly 300 such cases and, as with all of our patients, they are by their nature widely dispersed.

“I have patients in Cornwall, in Gloucestershire, in Hertfordshire…I do a lot of miles…”

Typically, the patients have complex conditions often requiring tracheostomy tubes or ventilation masks. Most are in wheelchairs. Aside from the driving, the job is complex. 

The specifics of the role include assessing and setting up the kind of breathing help needed, managing tracheostomy tubes (a tube inserted into the windpipe or trachea to help air reach the lungs), ‘weaning’ patients off ventilation if they can, and providing emergency support if the patient becomes ill.

“You are a pivot for all the other healthcare professionals who might be involved,” the consultant nurse says.

As well as knowing how to manage all this, her role also involves a dynamic mix of legal rights and ethics.

“You are in their home and if they don’t want you there, you have to go. So every time I go into someone’s house, I tend to have about four different options in my head.”

The homes themselves can be classic ‘hoarder’ territory, with piles of possessions cluttering up the space. And of course there are families, who need just as much managing.

“You are not just managing that patient you are managing that family and family expectations. You have to empower them and empower their families. Really, you have to be a jack of all trades, whether that’s a social worker or something else.”

“Sometimes just being a person at the end of the phone can make all the difference in putting someone’s mind at rest.”

As well as understanding how many of these patients are helped to avoid hospital admissions – admirable and of huge benefit in itself – I am curious to know what drives a nurse to specialise in such a complex, fraught line of work.

Perhaps not surprisingly, this is nothing like as fraught as the work she used to do, having worked for three years in Belfast, at the height of the troubles.

“We used to get helicoptered out to all the scenes of the bombings. You had to deal with everything from burns, chest drains, and emergency tracheostomies, to airway management and triaging in terms of who would live or die.”

“It set me up really well for covid because you had to think outside the box the whole time.”

Thinking on your feet, finding solutions, and not giving up, seem to be key here. “If it doesn’t work for one patient it may work for the next,” She says.

“Some of my patients want to go on cruises, which is fine – it just takes a bit more planning.”

Training in how to work as a team is also crucial. 

“My cardio-thoracic training at the Brompton in the 80s was an amazing course because you were treated as an equal team member which was at times often not the norm in those days as a nurse. You would have to talk about a patient on every ward round. If you didn’t know your stuff you had to go away and come back the next day having learned it.”

There is a resilience that comes from outside work, too. My subject is a born performer, who still sings jazz when she can, and who has a degree in philosophy and an MA in medical humanities – both rather useful for the line of work she now finds herself in.

But most of all it is her sheer love of looking after others as a nurse that keeps her motivated and inspired, and ensuring that her patients have as much quality of life that she can give them.

“I have been a nurse now for 45 years, and I’ve loved every minute of it.”