An experienced nurse has revealed the emotional and physical hardships of working in a children's hospice during the coronavirus pandemic.
Claire Fletcher, who has been at Ty Hafan in Sully, Vale of Glamorgan, since April 2019, is responsible for the medical care of life-limited children across Wales.
Her team is also on hand to offer parents respite from the intense day-to-day regime of looking after their often deeply unwell sons and daughters.
But like so many other organisations, the Covid-19 outbreak plunged the hospice and its vital work into doubt as both families and staff shielded from the virus at home.
In March, Claire, from nearby St Athan, admitted there was deep uncertainly as to whether Ty Hafan could continue providing its expert care.
"When the pandemic first hit, things were so fast moving," she recalled.
"We weren't sure if Ty Hafan was going to stay open or whether staff were going to get redeployed. Things really were up in the air for quite a few weeks.
"I wouldn't say we were at panic stations, but there was an undercurrent of nervousness about what was going to hit us. It was like seeing a tsunami coming and knowing it was going to be pretty catastrophic when it arrived.
"With Sars and Mers, there was a rough idea about what damage it would cause, but with this even the most intelligent people had no idea what was in store."
Claire, who feared being redeployed herself due to her previous experience as an intensive care nurse in the Army and as bank staff at the University Hospital of Wales, said risk assessments were carried out on Ty Hafan employees to see if they were safe to continue working.
But like a "well-oiled machine", she said the team adapted quickly to the ever-changing situation.
"Some families decided not to send their children to Ty Hafan because, at the end of the day, it is a healthcare environment and they were obviously worried about any potential exposure," she said.
"So there was a decrease in numbers because of shielding, plus there was a dip in the numbers of staff because some of them were also at heightened risk [of infection].
"Nobody came into the hospice if they didn't need to be there. Administration staff were in HQ and weren't allowed in, so it was literally only clinical staff.
"Suddenly the hospice was a lot quieter. We normally see fundraisers being escorted around because they want to see what their money is going towards. But all that had to stop.
"However, we found we had a lot more space, so that was one of those funny little upshots."
While Claire and her team were used to wearing basic surgical masks, she admitted full-blown PPE was very tough to work in for long periods of time.
As well as the headaches, dehydration and frequent nosebleeds, she said she was concerned about how the children would react to the "scary" protective equipment which covered their faces.
To put the children at ease and "normalise" the situation, she said masks were put on toys, while many of the clinical staff found themselves dancing to keep spirits up. They also learnt sign language to help communicate with some of them.
In addition, many of Ty Hafan's soft toys had to be removed from the premises - or taken home by the children - as they could not be deep-cleaned.
"When you have the mask on, your voice sounds so muffled that you find yourself talking much louder," she said.
"So when you're trying to project your voice you don't sound like you normally do.
"Everything just seemed to take longer [wearing PPE] because you are repeating things to make sure the child can understand.
"A lot of our children are cognitively impaired, so you have to make sure you are annunciating and allowing them time to process what you said.
"With some children, for example, they will look away if it's a 'no' and look at you if it's a 'yes'. But if they are constantly fidgeting because they cannot control their muscles, and they are looking everywhere, you really have to get to know the child and learn their quirky ways.
"When you're trying to do all that when you're all hot and sweaty and shouting, then it's a bizarre challenge."
She said the PPE visors were particularly problematic, particularly on bright and sunny days.
"Because it's curved, the light seems to shine right in your field of vision so you find yourself lifting you head up or down to look at somebody. Sometimes it can steam up as well," she said.
One of the most difficult tasks facing all Ty Hafan staff - pandemic or no pandemic - is trying to overcome the loss of a child while comforting their heartbroken families.
Claire said she's found it tough not being able to hug and console people in the usual way due to social distancing protocols.
"I've always felt that touch is an unspoken nursing skill," she admitted.
"Yes, the way you use touch can be therapeutic if you are a massage therapist or something, but from a nursing point of view you feel so impeded by not being able to put an arm around someone.
"I know it sounds completely draft, but [by not being able to touch and wearing PPE] you just feel like you're failing families at the most vulnerable point in their lives, even though I know we're not."
But Claire said the main "saving grace" has been the fact immediate families at Ty Hafan can be with their child in the final moments of their life.
"Families can walk around the grounds at any point that they need to, and then once the child has passed away they are able to take them in their arms and just walk down to the sea and just have that precious time together," she said.
"In intensive care many families have had to say goodbye via phone or FaceTime which is horrendous. It's really brought things into focus."
Claire admitted that her personal life has also been greatly affected by the pandemic.
"My husband is a wheelchair user and has been shielding," she said.
"I have had to change the whole system of how I come into the house. I use our front porch which luckily has our washing machine in it. So literally everything comes off, gets washed and I go in and get showered.
"My parents are over 70, so I've had to go out and get their shopping as well as ours. Initially I kind of just got on with it and didn't dwell on it too much. There was no time to think. But as time went on it was taking a lot out of me."
In the midst of the devastating pandemic, she said there have been moments of hope that she will treasure forever.
"Our therapy teams have been doing sessions for children at their homes, and now they're also doing sessions in the hospice via a monitor," she said.
"Occasionally they've come into the hospice and been very much at a distance. I had a child that was in for some symptom management and having a really rough time of it, and luckily one of the play therapists came in and was playing the guitar in one of our refurbished corridors.
"We had these little bell things that we played with, and the child could only lift their arm ever so slightly, but enough to tap them. It was one of those beautiful moments in such horrendous times. We had that little moment of interaction."
On reflection, Claire said it was "absolutely vital" that Ty Hafan stayed open during the outbreak despite the financial challenges it may cause the charity.
"While it was quiet to begin with, we are now seeing so many more families that are just utterly desperate for the help," she said.
"We see parents who are literally on autopilot with a child who is in so much pain, has uncontrollable seizures and other symptoms.
"They can come to us and we can be the ones that are monitoring them, giving them the medication and assessing what they need. And the parents can just sleep.
"Most parents say they can't leave a child for two minutes for fear something is going to happen, but for these families - as that child could have a seizure and stop breathing - you literally cannot take your eyes off them."
Ty Hafan has just launched an emergency appeal, called Caring through the Crisis. For information and donations please go to www.tyhafan.org/appeal
Ty Hafan supports around 271 families a year, providing specialist palliative care for life-limited children and addressing the physical, emotional, social and spiritual needs of each member of the family.
However, it costs more £4.5m every year to provide its services. The charity receives less than 10% income from health boards and the Welsh Government, while the rest of its income is generated by public donations and fundraising.
