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How the Republic's first consultant providing end-of-life care to children is helping families

Dr Mary Devins, the Republic's first paediatric palliative care consultant

MARY Devins experienced a moment of "magic" on a hospital ward 25 years ago when she watched a consultant allay the fears of an elderly cancer patient.

Witnessing the exchange between the senior medic and a distraught 78-year-old woman in agonising pain from pancreatic cancer, the young intern realised her career path.

"This lovely man who had just started as a palliative care consultant came in to see her," she said.

"He was so open talking to her about her future and how things were going to pan out. It was all the stuff I didn't hear other doctors talk about - this open conversation about feelings and worries and her family. He also started her on some medication.

"She had her first good night's sleep. I think part of it was not just having her pain resolved but actually addressing all her anxieties and fears. It was like he had done magic, it was amazing. I was completely in awe of him."

As someone who had always wanted to work with children, the junior doctor from Strandhill, Co Sligo became aware there was no dedicated end-of-life care for children in Ireland - and knew she would have to work outside the country to get experience.

After moving to Wales to work alongside a leading NHS consultant, Dr Devins travelled to Nova Scotia in Canada before returning to Dublin in May 2011 to take up the role of the Republic's first ever consultant in palliative paediatric medicine.

Such has been its success that a second similar job is being created to deal with the volume of referrals.

Northern Ireland's strategy was due to begin last year but has been shelved

The development in is stark contrast to the situation in Northern Ireland, where a 10-year strategy - that was written in 2015 and due to begin last year - to improve care for terminally ill children has been shelved due to funding shortages.

One of the key recommendations of the 2016-2026 plan, which was sanctioned by former Sinn Féin health minister Michelle O'Neill two months before the collapse of power-sharing, was the creation of a specialist consultant role. The north is now the only NHS region without such a position.

While Dr Devins (47) accepts the reality of budgetary difficulties, she said the north "certainly had the patient figures" for a similar post.

Based at Our Lady's Children's Hospital in Crumlin in south Dublin, her role centres on supporting consultants across the Republic providing palliative care to children as well as leadership to community nurses caring for children with life-limiting conditions.

Her appointment was created on the back of the Republic's palliative care for children strategy, published in 2010.

While medicine has radically improved in helping babies and children with life-limiting illnesses survive longer, there are more children dying in hospital.

"Losing a child is the worst thing that can happen to anybody," she said.

"A lot of my role is about helping children them with symptom management, seeing families who I might know over a number of years. I also meet women ante-natally where they have a baby that is going to be life-limited and we plan around the delivery and help support them.

"It is really tough and especially so since I had my own little girl four years ago. I hoped I always had empathy but when you have your own child it's different.

'I can't change what's ultimately going to happen but I can help families focus on quality of life and living in the moment'

"I can't change what's ultimately going to happen but I can make a difference as to regards how things will happen, where it might happen and how comfortable people will be. I can also help families make decisions around choices of what kind of care they want and where they want it to be.

"I can help families focus on quality of life and living in the moment."

Prior to Dr Devins' appointment, there were were just over 50 referrals to the paediatric end-of-life children's service annually - but this figure more than doubled last year.

Referrals are classed as those who make telephone calls as well as patients they see as inpatients and outpatients.

The specialist service saw almost 70 deaths last year.

The medic says there is a misconception that most of their young patients have cancer, when in fact the majority have "very complex conditions", such as the worst forms of cerebral palsy and bad brain injuries.

"The brain injury isn't going to kill them but they are very fragile and susceptible to horrendous seizures and pneumonia. They die prematurely because of complications. There's also a number of children where they have a very complex heart condition where they've had surgery but things aren't going well. There's quite a mixture."

An increasing number of young children from Northern Ireland with serious heart conditions are now also travelling to the Crumlin hospital for surgery following the reduction of services at the main children's hospital in Belfast.

"We have a large cardiac unit in Crumlin and it's possible I’ll be meeting more Northern Ireland children where things aren’t looking good," said Dr Devins.

One of the main components of the Republic's children's cancer strategy is nursing.

Unlike parts of the NHS, there were no community paediatric palliative nurses in the south prior to Dr Devins' work and they continue to rely heavily on district nurses providing adult end-of-life care.

Such was the demand for more community support that Dr Devins was instrumental in setting up 10 dedicated posts - a figure she wants to at least double.

"We're developing a team - we have 10 in place so far. They're called clinical nurse co-ordinators, who are children's nurses based in a paediatric ward but go out into the community and into children's homes. They deal specifically with children who have a life-limiting condition. There's 10 regionally throughout the country, but we need a lot more. I would love one for each county.

"At the moment adult palliative care teams around the country support us in helping keep children at home for end of life. Certainly when I worked in Wales and across the UK, adult teams will not get involved until the child is 18.

"But here it is different. We had a brain tumour child who went home for end-of-life care last week to Waterford and we could refer them to the adult palliative care team with doctors and nurses supporting that family. They'll put up drivers if needs be, they'll provide psycho-social support and symptom management support.

"The consultant can ring me for support and talk through things but they'll be the eyes and ears on the ground. So without that we wouldn't be able to have as many children die at home as they do."

Dealing with loss

The softly-spoken doctor admits there are days when her job becomes very difficult, especially when she forms close relationships with families.

"I try to take a couple of hours every week where I go and have a coffee and relax. People tease me that if I didn’t have this job I would work in Irish tourism as I love going to touristy things anywhere in the country.

"I've a really fab team of nurses and colleagues and we can chat to each other about things. I've got really good friends and a great husband. He's not medical, which means our house conversation doesn’t revolve around my work.

"But when things are tough I think of a quote from a Canadian consultant I met once who said part of our job is to 'help families take the path of least regret'.

"Families are always going to have some regrets but we might be able to help them choose the path that when they look back they will have the least number of regrets and things went as well as possible. There's huge job satisfaction from that point of view."

Short lives make a difference

INTERNATIONAL paediatric experts met in Dublin for a conference at the weekend to focus on developments for children suffering from life-limiting conditions.

Entitled 'Short Lives Making a Difference', the two-day event covered neonatal palliative care, bereavement support and support for young cancer patients.

The Republic's first palliative paediatric consultant, Dr Mary Devins, said there was "great excitement" around some of the guest speakers, including Dr Joanne Wolfe, director of palliative care at Boston children's hospital who she described as a "guru" for her approach in treating children with life-threatening illnesses.

The over-subscribed conference, which took place in Farmleigh House in the Phoenix Park, also attracted some of the world's leading nurses, including Alexandra Mancini who was the first lead nurse for neonatal palliative care in London.

Queen's University lecturer Sharon Nurse, who has investigated the anxieties of junior nurses in providing end-of-life care for babies in neonatal unit, was also a key speaker.

Northern health trust children's nurse Joan Duncan, who has a background in caring for young people with serious heart problems and is an ICU specialist, also attended to discuss her role as lead nurse for the trust.

The first NHS palliative paediatric consultant post was created in the early 1980s in Great Ormond Street children's hospital in London, when Dr Ann Goldman took up the post.

It is estimated there are 4,000 children with life-limited illnesses in Ireland

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