Doctor’s film depicts failure of specialist care for children switching to adult services
A doctor’s film about mothers whose children were born with complex special needs, highlighting the lack of specialist services when they reach adulthood, is being used to teach compassion to nursing students.
A film about the real-life stories of mothers whose children were born with complex special needs is being used to teach compassion to nursing students.
The film shines a spotlight on the lack of specialist services for these child patients when they reach adulthood, including the tragic death of one young woman.
It tells the stories of four Northampton mothers and their children, focusing on Charlotte (Charlie) Walter – and her mum Sue – who was born with type 2 spinal muscular atrophy and used a wheelchair.
Until she was 18 she was in the care of children’s services in Northampton and was provided with specialist nurses to help administer medication, manage her deteriorating condition and attend school.
Place in society
On her 18th birthday she was transferred to adult services, where consultant community paediatrician Andrew Williams, who made the 32-minute film, says ‘the specialist services she had come to rely on were simply no longer available’.
Instead, Charlie was provided with agency carers who would regularly fail to attend to her on time, meaning she frequently missed college.
The film reveals how after spending just 90 minutes in an adult emergency department following an admission, Charlie requested she be taken to a hospice, where a few days later she died, on 29 March 2013.
Dr Williams said he titled it The Boudiccae because the stories invoke the spirit of the warrior queen Boudicca, who led the Britons in revolt against the Romans in the first century. ‘The mothers have had to acquire her spirit and fighting qualities to help their children achieve their full potential in life and place within society.’
The film, by RIgFILM Productions, is now being used to teach compassion to nursing students – primarily those aged 18-20 – who attend screenings and discuss the messages contained in it.
Access to services
Dr Williams also hopes to influence the government to make funding available to local authorities so the services that children with complex needs have access to transitions seamlessly once they become adults.
The consultant, who obtained funding to make the film, said: ‘We worked for two and a half years to try and achieve a seamless transition for Charlie.
‘Despite this, it all fell apart, to the point where a bright young lady voluntarily decided to go to a hospice to die.
He added: ‘Society has to decide these incredible young adults are worthy of continuing to receive speciality care, and pressure the government to ensure it is provided for them.’
Dr Williams originally conceived the idea as a stage show featuring nine stories in total, in which Charlie would play her own mother.
It has been performed several times, including at the annual meeting of the Royal College of Paediatrics and Child Health.
Endorsing the film of her daughter’s story, Ms Walter said: ‘After just 90 minutes in the emergency department, and seeing staff were not aware of her history and didn’t even know how to change her tubes, she basically gave up.
‘The carers she had weren’t even allowed to give her an inhaler. It’s the little things that cause the biggest problems.
‘This needs to go all the way to government level or this situation will continue to be repeated across the country.’
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