How Renata Watts put SWAN families on the map

Meet the woman who got the UK health system to start supporting children based on their needs, not their diagnosis.

Renata Watts (nee Blower) is what you would call the ultimate advocate. Because of her work, political legislation and the UK health system now recognise and support the needs of undiagnosed children. Children like Renata’s youngest son, Dominic, who came along with a complex genetic condition that is still, 17 years later, undiagnosed.

As a founding member of SWAN (Syndromes Without a Name) UK, Co-Director of Special Needs Jungle and Co-Founder SEND Community Alliance, Renata has been a major driver of change for a cohort that, historically, has struggled to access funding, services and all-important camaraderie with fellow caregivers.

On a personal note, she’s also newly married to her long-term partner, Lawrence, who’s a Beefeater at the Tower of London. The pair exchanged vows at the Tower this summer, celebrated by a loving crowd including Dominic and his older siblings, 21-year-old Elliot and 19-year-old Lilia.

“I’ve also got a stepdaughter who’s 28 and a foster child who’s 13,” says Renata, speaking from her family home in St Albans, where you’ll find two dogs, one cat and some very elderly chickens “who are immortal”.

Renata’s life, as you can now somewhat appreciate, is busy. And she does all this with a chronic pain condition of her own, which impacts her sleep. “I think most parents of disabled children are just good at functioning on very little sleep,” she says.

In Renata’s case, they’re also very good at interviews. Read on to discover some of her achievements as an advocate for the SWAN community and her advice for fellow caregivers.

When did you first realise you were a caregiver – and life was going to be different from what you expected?

I know the exact answer to this because it was a real turning point for me. My three biological children all have needs of their own, but we didn’t realise that until much later on. It’s my youngest, Dominic, who’s got very complex medical needs and he’s physically disabled. When he’d been in and out of hospital and we’d been seen by Great Ormond Street, that’s when the alarm bells started going off and suddenly we had lots of different doctors involved.

That wasn’t when I realised I was a caregiver, though. It was when we had our first piece of equipment delivered.

Special-needs equipment is about as ugly as you can get. We got this monstrosity of a chair that looked like a torture device. It was all metal but they’d tried to jazz it up by putting brightly coloured fabric on it – I assume, so a child can vomit on it and you don’t notice – but it looked like a Christmas fairy had vomited on this chair. It was the ugliest, most horrendous piece of equipment and I literally just sat there, looking at it.

That was the moment when I realised this was going to be very different from how I thought it was going to be. And ever since that chair arrived, I’ve been fighting against the ugliness of special-needs equipment.

Basically, I pimp his ride. Dominic’s wheelchair has flames on the wheels and the front wheels light up. I was determined that he wasn’t going to be “that special-needs kid” where people stare at him. I thought, if we pimp his wheelchair, that means every reaction he ever gets is going to be a smile.

Dominic is now 17 and still without a formal diagnosis. What was that like, in his early years – do you ever make peace with the uncertainty?

When he was little, it was the most terrifying thing in the world because he was seriously ill, in and out of hospital and in and out of intensive care. Every time we saw a doctor they would be standing over him saying, is his heart okay? Is his brain okay? And as a parent, it felt like I was just spiralling. Just waiting for the shoe to drop. Just waiting for something to be found that they then couldn’t fix.

We now know that Dominc has probably got a super rare genetic disorder – so rare that it hasn't been discovered yet. He’s been on two genetic studies, trying to find out what’s going on and they haven’t come back with anything.

I’ve almost compartmentalised that part of him now, so I don’t even think about it really. Unless he gets ill – and that’s when it rears its ugly head again. Even just a cold makes Dominic really unwell and it’s impossible for my brain not to go: what’s the next step, next step, next step that’s going to happen from this?

That uncertainty is behind everything and the loneliness is really bad. Those are the dark days when you really need support from other parents going through a similar thing.

You’re now very connected with a community of fellow caregivers that you played a big part in forming – both through Special Needs Jungle and SWAN UK. How did these connections first come about?

When Dominic was little I searched and searched trying to figure out what was wrong. I read every single research paper I could and I looked for other parents because I thought, we can’t be the only family that doesn’t have a diagnosis. There must be other families out there.

When I was looking, I came across a holding page for SWAN through the Genetic Alliance UK charity. I contacted the woman behind it and said, ‘I’m looking for other parents – other families who understand what it’s like to be in limbo, basically – to bring everyone together for support. Is this what you’re doing, too?’ That was exactly what she was doing, so I got involved with SWAN UK right at the very beginning and it now includes a massive group of parents and conferences.

Your advocacy work with groups like this has made real change. Can you tell me about some of the achievements you’re most proud of?

Through SWAN UK, I’m very proud to say that I started Undiagnosed Children’s Day – an annual awareness day held on the last Friday in April – and it’s still going.

When we first started, being undiagnosed wasn’t recognised medically. All of the funding for the NHS was linked to diagnoses, so all of these super-complex children didn’t have any funding. Within hospitals, they were kept in limbo. They didn’t have specialist nurses, they didn’t have learning disability nurses, nothing like that. So I went to Great Ormond Street and I said, ‘I want to create a nurse role for undiagnosed children’.

This was going to need money and infrastructure, so I started looking for people to help me. It was around this time that I’d just released the video for Undiagnosed Children’s Day. The CEO of Roald Dahl’s Marvellous Children’s Charity saw it and sent me a message saying how much they liked it. That got me into conversation with them and, as a result, the charity completely changed who they looked after. Because, actually, undiagnosed and rare conditions fit their mission perfectly. Supporting the underdog is what Roald Dahl did.

With their help we got funding and we persuaded Great Ormond Street to create the role of Roald Dahl SWAN nurse specialist, who supports children with undiagnosed conditions. We also got Great Ormond Street to change the way they recorded children coming into the hospital. Now, undiagnosed children are recorded, which means they have care pathways, which means there’s funding released.

These days, people talk about undiagnosed children. They talk about SWAN. It’s not just, ‘well, you’re just waiting for a diagnosis’. It’s, ‘you are a child in your own right, and you have a family and you have needs’. So I’m super proud of that.

It’s amazing to think how many families will have had a different – and far better – experience in the hospital system thanks to your work.

I think for me, the most important thing was having someone on your side, because it often felt like it was me against all of these doctors. I knew that I knew my child best, but if I tried to say that, immediately they’d turn on me like, who do you think you are? I once made a complaint and then, all of a sudden, I was the problem.

That was probably one of the scariest things I’ve ever been through – realising just how powerless I was, as a parent – because nothing I ever said was on the record. The only people who get to add to the hospital notes are the doctors. You have no power. So I thought, even if we have just one person in that parent’s corner, that’s better than nothing.

Roald Dahl’s charity has put so many nurses in place that are needed – I can’t recommend people supporting them more.

As well as your legacy of work through SWAN UK, you’re also supporting families through Special Needs Jungle – a platform providing parent-centred information, news and resources for the caregiver community. When did you start writing about your experiences as a caregiver?

I wanted to record my experiences for myself because I have the worst memory in the world. I’ve got ADHD, so remembering things is a real issue for me. I also found it very difficult to update people about what was going on when I was in the middle of it because I was barely coping. Rather than texting 30 times a day updating people about the same thing, I thought, if I just write down what’s going on, people are just going to leave me alone, so I started blogging.

It was actually blogging and writing about Dominic that first got me together with Tania Tirraoro, who founded Special Needs Jungle.

Ed Timpson, who was the Children’s Minister at the time, read my blog and knew that I was advocating about not needing a diagnosis to get support, so he invited me to come to a roundtable event, when they were creating the Children and Families Bill.

I was there to say, you’ve got to change the language. You cannot have diagnosis-led interventions because there are children, like my son, who probably will never have a diagnosis but have profound disabilities. It needs to be a needs-led system so you’re not waiting for a diagnosis in order to initiate support.

Luckily, Ed listened. The Children and Families Bill now reflects a needs-led system.

Tania was also at this roundtable. We’d spoken quite a lot online but this was the first time we’d met and we went for lunch afterwards. We clicked so well that she then started hounding me to write for her. From that, she then started hounding me to become a director. I eventually relented and we’ve been working together ever since.

What’s the most memorable piece of advocacy work you’ve made happen through this partnership and platform?

Tania and I have worked through a lot of change, but I think what stands out most is actually trying to make the right change at the right time.

The privilege of being able to speak to lots of different people with lots of different views means that it’s expanded my worldview and expanded my understanding of what disability is. I think it’s very easy for us to see disability as being an issue in itself without ever understanding everything that goes around it that has just as much of an influence – like people’s home situations, their financial situations and where they live in the country, race and religion – these things all feed into a profile of a young child.

We make a grave mistake when we only look at a child’s disability without understanding everything else that influences them, so Tania and I are doing a lot of work around this.

We’ve now set up an intersectionality panel and we’re trying to bring leaders from as many marginalised groups we could find to put strategies together and give Special Needs Jungle some aims, to make sure that we were understanding what the issues are.

We have privilege – we have a foot in the door – and so we should be using that foot in the door to make sure that those voices that aren’t amplified are actually being heard.

You’re doing incredible work – and a lot of it. How do you make this happen while also caring for your family?

It’s funny, isn’t it? People always say to me, ‘I don’t know how you do it’ but actually, I wouldn't have it any other way. Having children with additional needs has changed my life. It has been bloody hard work, but the people I’ve met and the understanding I now have of the world and what's important in life – that, to me, is more valuable than anything else.

I’d hate to think that I could have lived a life where I hadn’t had that curtain pulled aside. A life where I didn’t realise what really matters, you know? So I wouldn’t change it for the world. Even though it’s probably aged me much faster than it should have done!

What advice do you have for parents who are new to the space, especially those parents who don't have a diagnosis?

It always gets better. No matter how bad it feels, it always gets better. And not to take away from the difficulty and the trauma of what people are going through, but the community you’ve been given a ticket into is one of the most special communities I’ve ever come across.

I've learned more from other parents than I have ever learned from Google and I promise you, no matter how difficult it is, once you’ve found your tribe you feel like you can own your life and you can be proud of it.

Find out more about SWAN UK, Roald Dahl’s Marvellous Children’s Charity and Special Needs Jungle via their websites.