Patient Advocate Power! Renata helps create first specialist nurse for Undiagnosed kids

Today is Undiagnosed Children's Day and a perfect day to tell you about an achievement for our SNJ team member and JustBringTheChocolate Blogger, Renata Blower.

To mark the day last year, Renata made this fantastic video with her three children, Elliot, Lilia and Dominic, who have an undiagnosed genetic condition. This year, she has achieved something even more brilliant.

renata and family

Renata spends much time in Great Ormond Street Hospital with her youngest son, Dominic, 8, who is the most seriously affected of her children. Renata knows first hand how terrifying it can be when your child is very unwell and there are no medical books in existence that can help. It was her experiences when Dominic was a baby that started her one-woman campaign to make sure that no other families had to go through what she had.

“It was, without a doubt, the loneliest and scariest experience of my life. No one could tell me if my baby was going to live or die, they couldn’t even tell me what was wrong with him. Doctors would come in and out our little hospital room and each time I was waiting for devastating news. It was awful, like being stuck in a living nightmare with no one to turn to for support. It was even harder when we went home, there was no one to turn to”.

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Renata works for a change

She realised that for children with a diagnosis, this wasn’t the case. With a diagnosis came support groups, charities, care pathways, research, funding and specialist nurses to help support the families through it all. Because being undiagnosed is not a recognised condition, families like hers were walking out of the consultation room with nothing but uncertainty.

Renata decided that had to change. She contacted  Roald Dahl’s Marvellous Children’s charity with an idea to create a nursing post especially focused on those children with ultra-rare unnamed illnesses.

Renata has spent many years trying to raise awareness of the difficulties that families with undiagnosed children face, including meeting with the Children’s Minister Edward Timpson.

“I had not lost hope that I would one day succeed in convincing people that this specialist nurse would be of huge value not only to families but also to the hospital. Coordinated care is extremely important for SWAN children who are under many consultants and often have complex medical needs and learning difficulties that follow no established pattern.

renata-dom

"A specialist nurse can make all the difference, reducing the number of procedures and tests, making sure that, where possible, appointments are scheduled on the same day, chasing up test results and ensuring that the child’s needs are understood if they are admitted to hospital are just a few of the ways the nurse can help.  Despite a few frustrating setbacks I was even more determined to find a way to make it happen. In the end it was luck that brought me the opportunity.”

Roald Dahl's Marvellous Children's charity to the rescue!

This time last year, the Roald Dahl charity left a comment on her Undiagnosed Day video, mentioned earlier, he had made and posted on Facebook to celebrate Undiagnosed Children’s Day. When she realised that the charity had already funded 50 specialist nurses for diagnosed children, she contacted them immediately.

She says, “I was so excited when I got a reply almost immediately giving me the CEO’s personal mobile number saying he was very interested to hear more about it and asking me to give him a call”.

roald dahl

Richard Piper CEO of Roald Dahl’s Marvellous Children’s Charity said, “I was immediately excited by Renata’s proposal, and realised what a difference the charity could make to undiagnosed children and their families. Conflicting information, limited treatment options and endless medical tests can turn the lives of SWAN families upside down and leave them feeling isolated, confused, highly anxious and even depressed. Everyday life can all but disappear. The current system is set up to provide support for a child once they have a particular label and fit neatly into a particular pathway of care and support. We want the system to work for everyone. By creating this unique Roald Dahl SWAN Nurse post with Renata – and showing the difference it makes - we are championing these thousands of overlooked children and families, and helping to create genuinely child-centred care.”

Renata believes that, “having a specialist nurse available for advice, support and especially to help to co-ordinate care will make life much less traumatic for many, many children and families like mine. I can’t wait to break the news to the families who are part of the SWAN UK community online. It’s perfect that our announcement coincides with Undiagnosed Children’s Day on Friday 24th April this year.

"This is the first step to ensuring proper support for very vulnerable families who have children with some of the most complex medical needs and disabilities in the country. The Roald Dahl SWAN nurse will be a lifeline to many families. I hope this is just the start and we will be able to roll this out to other specialist children’s hospitals very soon“

The Roald Dahl SWAN specialist nurse is thought to be the first of its kind in the world to specifically to support undiagnosed children.

The new role will be created in collaboration with children and their families with the Centre for Outcomes and Experience Research into Children’s Health, Illness and Disability at Great Ormond Street Hospital over the next few months. It is hoped the new post will join the team by early next year.

The Roald Dahl SWAN Nurse will be the 52nd specialist children’s nurse created by Roald Dahl’s Marvellous Children’s Charity, supporting children and families affected by variety of rare and under-supported conditions. Funding is being provided for one or two years to establish the post, in return for a commitment from the NHS Trust to fund the post for another two or three years.  Every one of the charity’s Roald Dahl healthcare posts has continued to be funded by the NHS, often way beyond the initially agreed period of three or five years.

This year’s Undiagnosed Children’s Day video has just been launched and can be seen below:

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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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