Kent Life meets three families with young children being supported by the hospice charity ellenor
The Paczensky family
Imagine if half of everything your child ate went towards wound healing rather than their growth. Imagine if your child was wrapped in bandages and any knock or bruise was deadly serious rather than part of life’s rough and tumble. Imagine if all your plans for the future changed the moment your child was born.
This is the situation Margaret Paczensky faced after a normal pregnancy and birth – just as easy as the one she’d had 18 months earlier with her son Jonathan – resulted in a daughter with a life-limiting skin condition who’d need 24-hour care.
We’re chatting at the Gravesend HQ of ellenor, the hospice at home charity, where I’ve come to talk to three families whose lives have been enriched by the support they have had from the brilliant staff and carers who are out in the community every day looking after families in the comfort and familiarity of their own homes.
Margaret is here with her daughter Ciara, now 12 and a vision in pink, daintily nibbling a piece of cake while playing on her laptop. So far so normal. But Ciara is in a wheelchair, eating painfully slowly and with difficulty, and when she does leave the chair briefly she has to rise on the tips of her bandaged feet to take a few steps.
This pretty, bright young lady has Recessive Dystrophic Epidermolysis Bullosa (RDEB for short), a genetic skin condition that means that every time she bumps or knocks herself her skin simply sheers away or blisters.
“There’s no cure so it’s all about pain management and wound care at the moment,” explains her mum.
Yet Ciara passed the 11-plus, attends Dartford Grammar School and now that she has the use of an electric wheelchair (donated by Whizz-Kidz) her independence has grown in leaps and bounds.
She loves baking and riding rollercoasters, wants to be a make-up artist when she grows up, or an author. I reckon she can probably achieve anything she sets her mind to. She’s simply amazing.
Only one in 5,000 people have the same condition and as a newborn, Ciara had to be referred immediately to specialists at Great Ormond Street, who still provide her main care. The family had to move house as their two-bed place in Sidcup wouldn’t give them the space they suddenly needed, so Dartford became their new home – and with it, the life-changing recommendation from a community nurse that they should make contact with ellenor.
“Ellenor took over Ciara’s day care and also provided respite, which meant I could do normal things like taking my son to swimming lessons and doing the shopping,” says Margaret, a former office manager for a risk-management company in London who was fully intending to return to work after her second child was born.
“Every Friday the nurse would come and help me do her bandage change – they were amazing and continue to be. It’s hard enough to manage two children under two but when one needs 24-hour care, it’s very hard indeed; ellenor is a lifeline to us.”
A big step change for Ciara was meeting her respite nurse Hannah when she was just four years old. “Hannah has been with us for eight years now so she’s like a big sister to Chiara,” says Margaret.
“She probably talks about stuff to her that she wouldn’t perhaps share with her dad and me, like when she’s had a bad day at school or some kids have said mean things.”
The two make weekly trips to nearby Bluewater – Ciara’s favourite place – and Hannah accompanied the Paczenskys on a trip to EuroDisney with six other ellenor families – where naturally Ciara tackled all the scary rollercoasters her big brother hates.
And caring for Jonathan has always been a big priority. He’s had play therapy over the years at ellenor to help him adjust he and Ciara have shared music therapy at home as they can’t enjoy normal sibling rough and tumble. He went on an ellenor adventure weekend for siblings of sick children, which made him realise he wasn’t alone.
“There are many hospital visits to Great Ormond Street and at first Jonathan was like, ‘it’s not fair, I’ve got to go to school and Chiara is off having an adventure with mum and dad’, as he would see it,” says Margaret. “So one day we took him with us and after hours sitting in corridors, which is what we do a lot of, he never wanted to go again!
“When we moved to Dartford I don’t know what we’d have done if ellenor hadn’t been here. Nothing was impossible or too much trouble. Ellenor are like the fifth member of our family now.”
The Turnbull family
Andrew Turnbull has two healthy sons, Maxwell, eight and Lucas, five, and on the surface they are a typical happy little family.
But in January 2014 his wife Shona was diagnosed with breast cancer, which spread fast.
“We met ellenor quite early on because it quickly became apparent it was very serious,” explains Andrew.
“I called up and, like a lot of people, I thought a hospice was just for older people and that no children were involved, so it was really refreshing that ellenor was so ‘on it’ for kids.
“The children’s play therapy team came round to see us at home in Meopham and were very proactive, suggesting some play therapy for Maxwell to help him understand the situation better and what was happening to Mummy.
“They also offered the chance to drop the boys off here at the Gravesend centre once or twice a week to give me a bit of a break, as I had the two boys and my wife to care for. I have my own fine art printing company so I was able to be quite flexible as far as work went and only had a month off during the whole time, but it was great to have the ellenor backing.”
Shona chose to die at ellenor Gravesend, surrounded by her family. “It was a pretty horrendous time but there was a lot of support and it was ellenor who said to bring the boys in.
“Initially I thought no, but then realised if they were there at the end it meant I never had to lie to either of them in the future and say they weren’t there. The staff were amazing, they were waiting for us outside with a real warm welcome and stayed all night.
“The support continued afterwards with play therapy and GEMS days (for grieving children); it was important for Max to know that other kids have gone through tough times too, and he was brave throughout it all.”
Andrew has now met a new partner, who has twins of her own, they’ve moved to a new place and Max has a new school, where he can do lots more sports than in Meopham.
“It was a big decision but I think it was the right one. I’ve had a huge loss in my life but no guilt, because I couldn’t have done any more and I had to get up every day to look after the boys and not wallow in bed.
“It’s been tough but life moves on, we’re in the process of blending two families and ellenor helped me a lot with my focus on life and I know their support is always there whenever I need it. Life has to gone on.”
The Barrow family
Mags and Dean Barrow’s second son Noah was born full term – unlike his brother Leo, who was very early – but after a few months started showing some worrying symptoms.
“We kept on going back to our local hospital and getting sent away with reflux medicine, until they finally gave him an MRI scan and straightaway told us he had a very rare condition called H-ABC syndrome, which affects certain parts of the brain,” explains Mags.
“We were devastated, didn’t know which way to turn. You feel very isolated from everyone else when you have a child who isn’t well. We couldn’t get out or travel with Noah and he was in a lot of pain a lot of the time.”
The family got referred to ellenor through their community nursing team and life started to improve immeasurably. “I’d only heard about the adult side before and hadn’t realised they cared for children as well as older people.
“They did the assessment and allocated us our respite hours and we now have two hours on Wednesday when I can get jobs done around the house like the ironing and six hours on Thursday, which gives me almost a day when I can go and do something meaningful.
“With two children we need total flexibility and ellenor has given us that and more. We can change the hours in holidays so I can do things like take Leo (now five) off to play mini golf and they cover when things crop up like a school day trip I’ve got with Leo.
“He doesn’t have expectations of what a younger sibling could be like and he’s a very thoughtful child, who cares about how other people are feeling. At first all the different people coming and going in the house used to upset him, now it’s just normal.”
The ellenor team has discovered things that Noah reacts to – like music and sensory stimulation, a certain light – that the Barrows didn’t know. He now has new cocoon-like chair, which has helped keep him safe and protected at all times.
They are one of the families visiting EuroDisney for three nights with a couple of ellenor carers and say they’re “over the moon” as they’d totally ruled out going abroad.
“And it will be lovely being with other families who understand,” says Mags, who worked full time for Bexley Council as an accountant and now uses some of her respite hours to carry on working.
“Just keeping Noah comfortable is our main aim, his condition is life limiting but we don’t know how long he’s got. So we make the most of every day and relish every bit of freedom we’re granted.
“There are other disabilities in the family and that, coupled with distance, means we can’t rely on a lot of physical support from anyone esle. We’d be in a totally different situation if ellenor hadn’t got involved.”
Key care
Rebecca Scalzo
Rebecca Scalzo, ellenor’s Head of Children’s Services, is all too aware that the word ‘hospice’ tends to conjure up an adult end-of-life picture rather than one that also includes babies and young children. And the demand is growing.
“We’re caring for 105 children but on top of that we also have all the siblings we’re supporting and the whole family. We know there are always more children out there who need our help,” she tells me.
“In the future we want to look at neo-natal support for very premature babies with complex medical needs and their families – and we also have the transition children who are moving into adulthood to look after. Once upon a time we just wouldn’t have had those different ends of the spectrum because so many babies and children died so young.”
Rebecca’s role is building ellenor’s strategy and taking the team forward into the areas that need developing – like neo-natal - while also developing the work of the adult services.
“I also need to make sure the team are resilient and able to go out and meet the needs of the different families. I am blessed with an amazing team, full of energy and with a wide range of experiences and skills, but sometimes my nurses come back upset so I need to make sure they get the support they need to get them through. Their emotional needs are important too.”
The team covers three patches with on average 30 children in each and two nurses in each patch: Bexley, Dartford and Gravesham and West Kent down to Tonbridge and Maidstone.
They each make around four visits a day, starting at 8am and finishing at 6pm, seven days a week; there is also a 24-hour on-call telephone advice service.
If a child is dying and wishes to die at home, a step-up rota can be implemented to enable nurses to go out and visit so that child and its family can be at home.
“The job requires a lot of flexibility and commitment and never stays the same,” says Rebecca, who has a background in mental care nursing and has always been interested in hospice care. “I like to think about what each part of the whole system needs in order to help each family,” she says.
Hannah Ives
Hannah Ives, 28, is ellenor’s respite manager and joined the charity eight years ago after working in a special needs school.
She is Ciara’s respite nurse and has known her since she was four and in nursery, then went through the whole of primary school with her. “Now Ciara’s at grammar school so I’m very proud of her. She can talk to me in confidence about anything,” Hannah beams.
“We don’t have as many deaths as the adult care team do but we do have children who die very young and that’s very hard, but we’re there to make a difference, to make families’ lives a little bit more normal because what they’re going through is not a normal process or life – and to make that child’s last few years, months or weeks the best they can be.” u
How you can help
ellenor cares for people of all ages, in their place of choice, 24 hours a day, 365 days a year. It is the only charity in Kent bringing specialist hospice care to a child’s home, allowing families to spend more time together. Its inpatient ward at the hospice in Gravesend provides round-the-clock expert care to patients and families in a safe and warm environment. As a charity and not part of the NHS, ellenor needs to raise more than £6.7m every year; please help if you can: ellenor.org/donate
