19
May
Harrogate mum to take cerebral palsy campaign to Westminster
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A Harrogate mum will travel to Westminster this week to increase awareness of a campaign to improve access to treatments for a form of cerebral palsy.
Natalie Sadler’s son Samuel, 6, was diagnosed with right-side hemiplegia at just nine months old.
Hemiplegia is a relatively common form of cerebral palsy, affecting around 1 in 1,000 children.
It means Samuel has very little use of his right arm. He can run and walk, Natalie says, but slower than other children.
Natalie said the “overwhelming majority” of children with hemiplegia do not have access to “National Institute for Health and Care Excellence-approved, evidence-based healthcare treatments that could change their lives”.
Following Samuel’s diagnosis, Natalie said her son has received “intermittent, limited support from the NHS”, and the family has funded most of his treatment privately.
The family found most information on hemiplegia through online support groups, including an intensive therapy course at Evelina London Children’s Hospital.
Samuel was treated through the course, during which Natalie and her family met Jilly Massey, an occupational therapist at the hospital who was carrying out a research project on access to evidence-based therapies for hemiplegia.
Natalie and Samuel’s family took part in Jilly’s research project and eventually the women, alongside other therapists and parents, decided to join forces to create an accessible booklet on hemiplegia for parents and guardians.
Natalie said:
Prior to this project, I had seen a BBC Breakfast News item on a mother and daughter who had, through a tragic loss, created a charity which funded bags of information and items they had found useful after the tragedy that they had been through.
This sparked an idea for me: wouldn't it be a great idea to be able to give parents a bag of information at the point of diagnosis? So many children are diagnosed too late or don’t get access to the right treatment, yet with the right early intervention, the results can be amazing.
Throughout the project with Jilly and other parents, we all inputted ideas for things we thought would be helpful in accessing treatment. From that, my initial idea evolved, with the help of other parents and Jilly, into a booklet that we have produced and hosted within a new organisation called Hemipower. It has been set up to empower parents and carers with the tools and information they need to enable their children to thrive.
Natalie and Samuel
Natalie added:
The booklet is primarily designed for parents after diagnosis to enable them to advocate for their child.
It describes the condition, shares the different types of treatment that should be available and what you can expect. It also shares details of all the healthcare professionals you should see and details some exercises you can start doing with your child, along with other organisations that can help.
Whilst it’s designed for parents, it’s helpful for anyone who might encounter the child, so school [staff]. Samuel’s gymnastics [club] have also asked for a copy - even healthcare professionals.
Westminster mission
To further highlight the campaign, is travelling to Westminster in the hope of getting the booklet in front of MPs at a parliamentary drop-in session hosted by Daniel Francis, the Labour MP for Bexleyheath and Crayford, on Wednesday (May 20).
Natalie hopes by drawing MPs’ attention to the Hemipower booklet, they might be able to help “get it into the hands of parents at diagnosis by getting in into the NHS”.
“We’ve asked that they [MPs] make contact with their local NHS chief executives”, Natalie said.
She also hopes MPs who attend the drop-in session will write to new health secretary James Murray calling on increased awareness of and better access to treatments for hemiplegia.
This includes creating a dedicated hemiplegia page on the NHS website, improving diagnostic pathways, making referrals clearer and updating existing guidelines on hemiplegia.
Natalie - who will be joined by another parent, healthcare professionals and dedicated charities on Wednesday - also plans to ask MPs to share details of the booklet and the campaign on social media.
You can dowload the Understanding Hemiplegia booklet by clicking here.
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