Heat, hospitals and high hopes

PANS PANDAS UK is passionate about improving awareness, and no-one does that better than our tireless supporters.

On Friday 14th August, despite unprecedented soaring temperatures, five amazing community members trekked for seven hours across London, covering more than 16-miles as they visited five hospitals on their way towards Parliament. The amazing team talked to us about their awareness-raising adventure.

Becca Whyte, charity friend, super supporter and part of this terrific team, explains where the idea came from.

“The idea was to physically take PANS and PANDAS out of the online and medical spaces where the community can sometimes feel invisible, and put the conditions directly in front of some of the people and places that can help drive change.

We wanted to improve awareness and recognition, and also to raise money for the fantastic charity PANS PANDAS UK. The charity is a lifeline for families like ours. Not only does it support people through incredibly difficult times, but it also drives real time change that is directly impacting children and young people.

The walk itself was deliberately visible; a visual sign from the community that, alongside the amazing work being done by researchers and clinicians, there are real families and children willing them on and desperate to see that progress translate into better care.

It felt particularly important to us to mention the new UK guideline to everyone we met, because it represents such an important opportunity to improve care, recognition and treatment across the country. We wanted to demonstrate that the community is ready to support professionals in making sure the new guideline is understood and implemented across the NHS.”

The route:

Whittington Hospital
Chelsea and Westminster Hospital
Great Ormond Street Hospital
The Children’s e-Hospital
Guy’s and St Thomas’
Evelina London Hospital
Houses of Parliament

So far, the group has raised over £3000! Can you help them raise even more for PANS PANDAS UK?

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The bigger message

There was also a bigger message behind walking from hospitals to Parliament. The team wanted to connect the two ends of the journey — the places where children and families need appropriate clinical care, and the place where policy and national change can happen. Becca added:

“We wanted to show that behind every discussion about recognition, diagnosis and treatment are children whose lives can change dramatically when they become unwell, and families who can spend years trying to get their experiences understood.”

Terrific Tilda

A special shout out goes to nine-year-old Tilda, who was determined to take part and represent the PANS PANDAS UK Youth Board.

Becca (Tilda’s mum) said “Despite the heat, the distance and the inevitable tired legs, she moaned considerably less than the rest of us and was determined to see it through. It was really special to have the voice of a young person with lived experience represented on the walk, and she was a huge part of what made the day so meaningful.”

Warm welcomes all round

The group were met with a warm welcome at each hospital, with chief nurses stepping out to chat and a leading neurologist at GOSH taking a moment out of her busy working day to greet them. There was even a welcome committee (and well-earned buffet) at Chelsea and Westminster! Once they got to Parliament, they were greeted by Lee Pitcher, MP for Doncaster East and the Isle of Axholme. Becca reflected:

“We were blown away by the positive response of the central London hospitals. Hopefully this engagement will send a signal to smaller trusts that the upcoming guidance is something they need to be aware of to improve care for children and families affected by PANS and PANDAS.

We really hope that this trek encourages other community members to engage with their clinicians and invite them to the conference, to hear about the game-changing guideline.”

On his social media, Lee Pitcher MP said:

“I met the most incredibly inspiring group at the end of their walk between several London hospitals to raise much-needed awareness about PANS and PANDAS.

The least I could do after their efforts in the unbelievable heat was to greet them at the end of their journey, hand superstar nine-year-old Tilda (who has PANS) a House of Commons teddy for her amazing efforts, and welcome the whole team to Parliament!”

Jenna and Isa

Another trek superstar is Jenna Hood, whose nine-year-old daughter Isa started showing symptoms of PANDAS very suddenly, with her behaviour changing overnight. Jenna describes the following months as ‘utter hell’ for her daughter, until a doctor who recognised PANDAS was able to treat her. Jenna shared:

“It was such a really worthwhile trek. The clinicians and hospital staff were very receptive, warm and welcoming. Some of them were very willing to hear about our experiences of PANS and PANDAS and how much a difference treatment makes.

Walking with three other mothers, it was never so clear to me that we have all walked around this unique circle of hell that is navigating a sudden change in your kid. It’s horrendous, and treatment is life changing. We want everyone, everywhere, to know about PANS and PANDAS, to make sure these conditions don’t steal the lives of any more people.”

Jenna wrote a song about her experiences which has spread awareness of the conditions to more than 5 million people, with thousands of comments from families across the world who are affected by PANS and PANDAS; all discussing the importance of appropriate and timely treatment. We are incredibly grateful for this powerful awareness-raising. Hear her special song here.

Katie and Hugo:

Katie supports her nine year-old son Hugo, who was diagnosed with PANDAS at age six. Katie said:

“This wasn’t just about raising money for the incredible PANS PANDAS UK. Walking 16 miles in a heat wave was my way of taking a stand and advocating for every child and family affected by this devastating autoimmune disease.

Raising awareness is so important. Too many children are left without the understanding, recognition and specialist medical care they desperately need. I hope that by speaking up and raising awareness, we can help more children receive the right support and treatment they so rightfully deserve – and ultimately change lives.”

Lyndsey Dyer

Lyndsey added “I was so grateful to have been asked to participate and to have met so many amazing parents on the same difficult journey. I want to say a huge thanks to my fantastic MP, Lee Pitcher, for making the journey too and always supporting us. Every stride was worth it in the red-hot sun to help spread awareness and shine a light on something that means so much to so many families. I’m so proud of what we’ve achieved… as I sit here nursing my blisters!”