It is beyond distressing to see a child suffering in pain, but how do you help them when they can’t tell you where it hurts? At Great Ormond Street Hospital, solving a problem like that is the tough job of the academic paediatric pain anaesthetist Dr Suellen Walker. On her daily round of the wards, Dr Walker sees children who are tender from surgery, who are undergoing severe treatments such as chemotherapy or who are in agony with chronic pain.
Researching pain in children is critical because, as it stands, much of the existing research is based on adults and we now know that children react very differently to pain. What’s more, children respond differently to pain as they grow up, and unless we can find the specific reasons behind this, some children will be forced to continue suffering for days, months or even years.
This is a tragedy we can avoid, but only with the help of vital research. Research into pain in children has historically been critically underfunded because charitable funding is usually based on a specific condition, whereas consultants such as Dr Walker see children from across the whole spectrum. But by supporting the Give to GOSH appeal you are helping her to find new and better ways to keep young patients free from pain.
Your incredibly generous support is helping to fund important research by Dr Walker into neuropathic pain in children of different ages. Neuropathic pain arises from damage or disease within the nervous system and is one of the most difficult types to control. According to Dr Walker it is often experienced by children with very complex conditions, like those supported by the Louis Dundas Centre for Children’s Palliative Care, which Dr Walker works closely with to understand more about the sometimes terrible pain felt by children with life-threatening illnesses.
The awful feeling of helplessness that often comes with this kind of pain is one that Sonay Mustafa, from Enfield, remembers well. Her precious daughter Kader was supported by the LDC before she passed away at the age of six, and sadly the pain she suffered is something that has stayed with Sonay.
Meet the patients and doctors of GOSH
Meet the patients and doctors of GOSH
1/9 Elliott Livingstone
Two-year-old Elliott is a “cheeky” little boy who has a Thomas the Tank Engine sticker on his Berlin heart machine, which has kept him alive since his own heart failed eight months ago. Elliott has two tubes pumping blood around his tiny body. It keeps him alive but the machine has left him confined to the wards of Great Ormond Street Hospital until a new heart is found
2/9 Melissa Strickland
As the ward sister on Koala Ward, Melissa Strickland leads a nursing team with the challenging job of looking after children with craniofacial and neurological conditions. “You have to have all the skills and knowledge to do this job but personally for me you cannot do it unless you have passion but also compassion,” she said. “You don’t get used to the sad side of things but you do learn to manage it.”
3/9 Amy Willis
Amy Willis carries a discreet black medical bag everywhere she goes. It contains the cutting-edge HeartWare device that is keeping her alive. A smaller, more advanced version of the Berlin artificial heart, it was fitted in April after she was emergency airlifted to GOSH from Alder Hey hospital in Liverpool. The device means that 14-year-old Amy can be home in Flintshire this Christmas while remaining on the heart transplant waiting list. She is doing well but 15 per cent of patients with a HeartWare device or Berlin heart die while waiting for a new heart, so money raised by the appeal will also go to help researchers identify ways to keep children alive while they await transplant
4/9 Myra Bluebond-Langner
Professor Myra Bluebond-Langner represents the vital work of the Louis Dundas Centre for Children’s Palliative Care, GOSH’s world-class centre dedicated to research and care for children with life-limiting illnesses. The LDC is named in honour of Louis Dundas, a four-year-old boy who died in “unspeakable pain” after suffering a brain tumour in April 2008. Its aim is to ensure that no child suffers unnecessarily in their final days. Money raised from The Independent’s Give to GOSH appeal will go to fund the team’s work to manage pain, and also fund vital research into palliative care in children across the whole of the UK. Professor Bluebond-Langner, who heads the research, said: “Paediatric palliative care is a relatively new field where practice has outstripped research. We look to change that.”
5/9 Finella Craig
Together with with Professor Myra Bluebond-Langner, Dr Finella Craig represents the vital work of the Louis Dundas Centre for Children’s Palliative Care, GOSH’s world-class centre dedicated to research and care for children with life-limiting illnesses. The LDC is named in honour of Louis Dundas, a four-year-old boy who died in “unspeakable pain” after suffering a brain tumour in April 2008. Its aim is to ensure that no child suffers unnecessarily in their final days. “One of the worst experiences for a family is to witness their child in pain and discomfort, and for them to feel totally powerless to do anything about it,” said Dr Craig, a consultant in paediatric palliative medicine at GOSH since 2002. Money raised from The Independent’s Give to GOSH appeal will go to fund the team’s work to manage pain, and also fund vital research into palliative care in children across the whole of the UK.
6/9 Rowan Pethard
Like most little boys, Rowan Pethard loves playing football. At the start of 2015 the seven-year-old Spurs fan baffled his doctors in Hemel Hempstead with a string of coughs, colds, tummy bugs, aches, pains and rashes. It wasn’t until quite late on that doctors discovered he had leukaemia. He spent two days in intensive care while he had emergency chemo. He has two years of follow-up treatment ahead. “He’s amazing, a little superhero,” his mum said. “It makes it easier for his father and I and his brother to cope.”
7/9 Martin Elliott
Paediatric heart and lung surgeon Martin Elliott, 64, is one of the longest serving doctors at GOSH, leading groundbreaking research and treating thousands of patients over the past 30 years. His work has bridged the gap between surgery and research with skills ranging from heart-bypass surgery to correcting congenital lung disorders.
8/9 Ralph Frost
For Ralph the hardest thing about having to live at GOSH while he waits for a new kidney isn’t missing his toys. He has plenty of those and can terrorise the nurses by pushing his little red motorbike down the corridors of Eagle Ward. The hardest thing for the six-year-old is battling not to cry out during his nightly dialysis sessions. “It really hurts,” he said. “But the other kids are sleeping and I don’t want to wake them up.” Ralph suffers from nephrotic syndrome and is currently waiting for a kidney from his father, Nick. He’s called the kidney “Chase” and his parents, who have been trained to operate his dialysis machine, hope to be home by Christmas
9/9 Lynsey Steele
The strongest praise for Lynsey Steele, 33, comes from the parents of the children she helps. “The children here wouldn’t get by without Lynsey,” said Ralph’s mother Amie Frost. “If she wasn’t here then we’d have cracked up.” Lynsey’s role, which is funded by the Great Ormond Street Hospital Children’s Charity and will be supported by The Independent’s Give to GOSH appeal, is to help children play and relax, but also to have the difficult conversations explaining their treatment
“Kader was sometimes in a lot of pain and I would feel so helpless,” Sonay says. “There’s this terrible sense of guilt that you’re not helping your child enough, that you can’t take their pain away.”
To bring comfort to children like Kader, Dr Walker’s research team is looking at the mechanisms underlying neuropathic pain, to better understand why nerves send spontaneous pain signals. In the lab at the UCL Institute of Child Health, they will examine how nerve fibres involved in pain signalling are affected by disease or injury. Sensory testing on the wards at GOSH will then assess children to see how much it hurts, and where, so they can be helped as much as possible by the wonderful staff at the hospital.
According to Dr Walker, the sensory testing involves using “specialised equipment to measure responses to stimuli, such as touch, pressure and temperature, which tell us about the function and sensitivity of the small nerve fibres, and whether the treatment is working”.
This is leading, breakthrough research that in the future could mean that a child with a life-threatening illness could more comfortably enjoy the precious time they have left with their family. By supporting this appeal, you are making a difference. You are supporting the crucial next steps towards important research breakthroughs and helping the hospital move closer to providing pain relieving treatments so desperately needed by sick children.
Just the touch of a bed sheet can be agonising when nerve pain is not properly managed. Tarun Sundersingh, from Ilford, who has a rare condition called multiple pterygium syndrome, is an example of a patient who experienced intense, chronic pain and remembers that no one could really explain why.
“When I was 16 years old, during my GCSEs and my first year of college, I really experienced extreme pain,” says 19-year-old Tarun. “It ran from my hip to my knee and kept me awake at night, so I was missing a lot of school. It felt like the pain was taking over my life. I was prescribed many different tablets, and given anti-depressants to help me sleep. None of the doctors could say exactly what the issue was.”
Fortunately, Tarun went on to a pain management programme at GOSH and was given pain management techniques that eventually helped him go back to school. No child deserves to suffer and miss out on basic things like a good education, sleeping through the night or playing with friends, and with your support, research by Dr Walker’s pain team could bring children relief earlier and faster so they don’t have to.
I cannot begin to comprehend what it must be like to watch a child in extreme pain, and from speaking to Dr Walker, it is clear it isn’t an easy job. She admits: “It is very hard seeing children suffering from some types of pain that are difficult to control. However, this motivates us to continue our research and make further improvements in care, and it is wonderful to see children recover and begin to enjoy their life again.”
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