Access to Joy with Kirsty Hoyle

ACCESS TO JOY: WITH KIRSTY HOYLE, CEO OF METABOLIC SUPPORT UK

We met Kirsty Hoyle, the CEO of Metabolic Support UK to talk to her about her journey to becoming a charity leader, and how that now also intersects with her having a child with a rare disease following her youngest son’s recent diagnosis with Hay-wells syndrome. Kirsty Hoyle

Photograph by Victor Malyushev, Unsplash

At just sixteen years old Kirsty began working as a care assistant in a nearby nursing home which also included a separate provision for people with learning disabilities. Perhaps unexpectedly for someone who was naturally creative, and with a passion for writing and indeed the arts generally, what might have just been one in a succession of early part time jobs instead shaped the course of her professional life. “I hadn’t met many disabled people in my life, and I really enjoyed having the opportunity and the challenge of making everyday life accessible for people for whom it wasn't.”

After graduating from Exeter university she worked in a special needs school in London whilst also working on her own theatre and drama projects. It was during this busy period of her early adulthood, whilst adapting to life in the capital, that she really began to become more keenly aware of the widespread inequalities that permeate throughout our society; “I started to see even more clearly, every day, the differences in how society was built and who it was built for.” Her early experiences working with adults with a learning disability had sparked a desire to change the ways is in which arts and culture were accessed, to try work on ways to “give people access to things they didn't have access to.” Quite simply, it was about creating solutions to ensure that people are not being left out. A job in the Unicorn Theatre as their first Access Manager gave her the opportunity to truly combine her passions for the arts and disability rights, working on new and innovative ways to ensure the theatre became more accessible for disabled people. Having built a model of accessibility for theatres, and introducing the pioneering concept of ‘relaxed performances’ she went on to work with theatres around the world to improve their accessibility. Over the years she has been employed in a number of roles which have combined her creativity with her commitment to advocating for and creating change within the field of disability rights.

Kirsty’s commitment to creating change is rooted in her belief that as someone who has had the privilege of not experiencing many barriers in her life it is her responsibility to try find ways to open up access and opportunities for people that don't, or have not had have them as readily. She is keenly aware that there is a delicate balance to be negotiated between being the change you might wish to see, and actually continuing the systematic top down, ableist, and ultimately disempowering way in which society has been constructed. “For me there were two things, arts and disability. But I'm a non-disabled person.”

In the late 1960’s the phrase ‘the personal is political’ became well known, having been widely used by the activists of the secondwave feminism that brought feminist issues into the political and public arena in a new way, challenging and changing the traditional roles assigned to men and women. But what about those for whom the political is not in fact personal? If the change you are passionate about is not one that arises from, or is reflected by your own lived experience? “How do nondisabled people intersect with disability spaces” is a question that Kirsty has continually asked herself throughout her career, a career which has closely followed the curve of her interest and passions in life, but not her own lived experience. “As a non-disabled person, it became increasingly clear that it was important that I was making way for disabled people to lead that change, and not leading on these things myself.”

Kirsty and her children. Imagery courtesy of Kirsty Hoyle unless stated otherwise

I hadn’t met many disabled people in my life, and I really enjoyed having the opportunity & the challenge of making everyday life accessible for people for whom it wasn't."

Kirsty Hoyle

An experienced charity leader and strategist, Kirsty brings her knowledge and experience to Metabolic Support UK to build on the charity’s 10-year strategy; to continue to improve the lives of patients and families living with Inherited Metabolic Disorders, whilst leading the way in collaborative, evidence-based patient advocacy. Kirsty is committed to raising awareness of issues that impact on people’s lives through integrating lived experience, public policy and service delivery.

I started to see even more CLEARLY, every day, the DIFFERENCES in how society was BUILT & WHO it was built for.”

Who are Metabolic Support UK?

Metabolic Support UK is a leading patient organisation for Inherited Metabolic Disorders, supporting thousands of families worldwide that have no other support. Metabolic Support is a world leading advocate in the field, providing support to families; signposting to the best experts; raising awareness amongst the medical, healthcare, social care and teaching professions; and funding research for treatments and ultimately cures. Kirsty realised that whilst her professional, and indeed life experience might have an important part to play, it would be the professional skills coupled with real lived experience that would be crucial to the continued development of these campaigns and projects. This understanding, and indeed commitment to meanigful change, led her to work on a succesion plan to transition her leadership role to a disabled leader in her previous post.

In February of 2021 life took an unexpected turn. A single mum of two boys, who was working in an exciting and demanding role as the CEO at Transport for All, Kirsty was used to life being hectic. Once the lockdown restrictions eased she took her youngest son, William (Wills), to the dentist because he didn’t have many teeth. As soon as the dentist looked in his mouth he commented that he had “severe hypodontia, the most severe case he’d ever seen,” before calling in a colleague who immediately, and without any preamble, simply stated that “he’s got EDs, I can tell straightaway."

The unexpected diagnosis, and the way in which it was delivered was a shock. “I would say they took a bit of a punt considering I could have been someone who had a completely different response to them. The one thing that I had to process afterwards was someone saying ‘you know, I can tell by looking at your child that they've got a genetic condition. It's a bit of a moment. As soon as I got back to the car I got my phone out and, like every other parent, I sat there panicking and googling. Mad googling. I found the Ectodermal Dysplasia Society and it was brilliant, and honestly it makes me emotional now just thinking about how it felt, to see smiling faces of people saying ‘we've got this and it's all alright,’ and information and a Facebook group that I could join immediately.”

Through reaching out to other families online Kirsty found herself connecting with, and having deeply meaningful interactions with other parents, finding comfort and hope through these online communities. After joining the ED Society

Facebook group she arranged to have a virtual coffee with another mum the next day on zoom. The call would go on to last for almost two hours, and she recalls that when she first went on it was all too much, the shock of the sudden diagnosis, and what it might mean. “I couldn't speak… and I just burst into tears. She was so lovely to me. And it changed things for me, that two hours with this woman, and without the ED Society setting up a Facebook group and creating that community I wouldn't have had that moment. That's why I feel so privileged, that that's my job now.”

A few months after her son’s rare diagnosis Kirsty was appointed as the new CEO of Metabolic Support UK. Whilst her son’s condition is not metabolic, this move reflected her continued interest in those communities that are in some way disadvantaged, left out, or not catered for within society. “What I was always interested in is a group of people who for some reason are left out, or not getting what they need, whether that be people with diabetes, whether it be veterans… How do we remove barriers, and create opportunities. And the fundamental element of that is also making sure that people understand that they are the ones who create disabling barriers, not the person who has an impairment, whatever that might be.”

In joining the rare disease community Kirsty is able to bring elements of the disability rights based model into the rare disease space. But whilst William’s diagnosis might have changed the trajectory of Kirsty’s life, and despite now being the parent of a child with a rare condition she is clear that this does not give her the right to claim this as her lived experience. As his parent she absolutely has a crucial role to play in helping him to learn how best to manage, and to live with his condition. But as she explains "As a non-disabled person I live in spaces that cater for my needs; if I am exhausted I can choose to 'shut the door' on work, or fighting for William's rights but others cannot. So yes, I do understand what it's like to have a lived experience now of the constant battle to get what you need in the way you need it. Images shared from the Metabolic Support UK online community

But no, I still don't understand what it's like to be the person.”

The year that Kirsty joined Metabolic Support UK was also the year in which the charity turned forty years old. Like many patient led organisations MSUK was set up by Peter and Lesley Green because of their experiences with their daughter Jen, who had a rare condition. The aim of MSUK is best captured using their own words; ‘Your rare condition. Our common fight’, and over the years the charity has become an innovative leader within the field, serving over 500 different inherited metabolic disorders (IMDs), and 20,000 people living with IMDs. As she leads the charity into its next phase, Kirsty and the trustee board are committed to bringing together the knowledge and experiences gained previously, to try and reframe the tone and the conversations around IMDs, moving away from a medical model to a social one.

MSUK hope that “the changing policy landscape brings opportunities for the genuine advancement of rare patients’ needs.” (see their 40th Anniversary Report on their website). As with her work within the field of disability rights she is passionate about bringing focus to, and challenging how both the government and society builds and delivers public services, and how people continue to be left out. As a field which is at best often underfunded, at worst largely ignored, the rare disease space can suffer from a lack of innovation, and so the charity is committed to continue to bringing new voices and new perspectives in, and to keep on innovating, and driving forwards change. Kirsty is clear however that this will be no small task, with “huge tectonic shifts needed in order to increase the amount of treatments available for people with rare diseases, people with inherited metabolic disorders.” Over the years individual inherited metabolic disorders have established patient organization groups of their own, so MSUK increasingly functions as the direct patient advocacy organization for very rare metabolic conditions with very small patient populations. They also work closely with other established patient organizations to supplement and support their work, using a joint approach to look at, and challenge the whole ecosystem of rare disease and the policies and framework upon which they sit. “If you're fighting for a particular treatment for a condition, and you are supporting that community, you don't necessarily have the time scale, or will to be able to look into the wider policy frameworks, and economic barriers to what you're trying to achieve. So increasingly, we are picking up projects that support IMD organizations, rather than working directly in that disease area.” Importantly however MSUK also works in ways which traditionally might not have been thought about in the context of the rare disease agenda. An example of this is a recent small project focused on travel insurance. Those with rare conditions can struggle to find appropriate travel insurance that is not prohibitive in terms of costs or exclusions, and so they worked with the organisation which sets the criteria that all travel insurance agencies use, to add more IMDs to the list. The reasoning behind projects like this is simple; “access to treatment is important. But so is access to joy.” MSUK is passionate about trying to help people within the IMDs communities understand the wider context of their rights, intersecting with disability rights and to empower people to understand more about

Inherited metabolic conditions

Inherited metabolic disorders refer to different types of medical conditions that are caused by genetic defects (most commonly inherited from both parents) that affect, and interfere with the body’s metabolism. There are hundreds of inherited metabolic disorders, caused by different genetic defects, and with a wide range of symptoms and prognoses.

For helpful guide visit their website

how the healthcare sector works, so that they can better access what they need. As well as their commitment to research they want to focus on more immediate possibilities for change, for an easier, more accessible and fairer today, and a better tomorrow. MUSK “want to widen our focus to make sure we're looking at access to arts, access to day to day health care, access to mental health support services… so whilst we really support people getting access to the treatments that they need, we also feel that there needs to be an extra emphasis on what can happen today to

Access to treatment is important. But so is access to joy.'

Finding Your STRENGTH

“I decided to spend my life doing what I love and not making myself unnecessarily stressed. After you've been through something so traumatic, and life-changing, that a lot of people are lucky enough never to experience. I think it does make you re-evaluate what's important. I'm so happy, just living my life the way I do, and making sure I enjoy my life. That's the main thing for me. I think that's a really powerful message to send, especially to people who live within the rare disease world who have many uncertainties hanging over their head, you know, to enjoy and take it for what it is and focus on the positives.”

Olivia Goddard is 21 years old, and lives in Surrey with her family, Mum Clare, Dad Scott and brother Zac. Scott, Olivia and Zac all have hereditary Neurofibromastosis type 2 (NF2), and although it is very much a part of the fabric of their everyday lives as a family they are positive about the future, they work on enjoying life, and being present in the now.

As NF2 is typically hereditary both Olivia and Zac were regularly monitored by specialists throughout their childhoods.

DR LIZ O’RIORDAN

Photo by Kenny Webster on Unsplash

As the years passed Olivia thrived, and blossomed into a fun loving, happy and busy teenager, juggling school, a burgeoning social life and her love of horses. Life was good. At the age of 15 when she was undergoing her regular assessments Olivia asked for an MRI scan, but the specialists were reluctant as she appeared so well, and there was no obvious need for the procedure. “I had to fight for my MRI because they bring you in, and then they check you over, testing your reflexes and the different pressure points on your body to see how you react. They look into your eyes, your ears, and I was coming up fine. I had no headaches."

"My hearing was fine. My vision was fine. You know, everything was fine. And so they actually said to me ‘you don't need an MRI’… but me being a stroppy 15 year old girl, I wanted my MRI, and I got my MRI.” Unexpectedly, the MRI brain scan showed that in fact Olivia had been living with four developing brain tumours, an ependymoma Grade 2++ that measured approx. 8cm x 5cm (the size of a large orange), an optic nerve meningioma and two bilateral vestibular schwanommas. Typically ependymomas grow on the spine, but hers was in her head. Her brain had moved to the left, adapting to and accommodating the tumour which was on the right side. Quite remarkably she was, at the time of the MRI, still functioning normally, but the tumour had developed to the point where it was presenting a danger to her life.

LIVING WITH

“Within a week of finding out the results I was in hospital having surgery to get it (the tumour) removed, there could have been many life changing threats with that operation because it was in the centre of my head, surrounding my spinal cord. It's amazing that I am the way I am now because my life could have been so different after the operation. Luckily, everything was fine, they got all of it out and, touch wood, it hasn't grown back.” Showing the same determination that she’d needed to get the MRI, Olivia’s recovery exceeded all expectations, and she walked out of hospital just over three days later and continued to make an amazing recovery.

Olivia had been living with four developing brain tumours, an ependymoma Grade 2++ that measured

approx. 8cm x 5cm (the size of a large orange). Reflecting back on that time now she remembers that despite the enormity of the situation it just didn’t feel very real. That her initial thoughts were simply that as the brain surgery was needed it was best to just get on with it, to get it over and done with. It wasn’t really until the pre-op tests were being conducted that she began to understand how life-changing the surgery might be. There were multiple possible outcomes and different things could go wrong,potentially leaving her with some of the disabilities that many living with NF2 are left with post-surgery for particularly complex tumours. “It was a very surreal experience. After that operation I was on top of the world, you know, thinking ‘I've just smashed brain surgery.’ I actually had the mentality when I was in hospital that I wanted to be the fastest person to recover from brain surgery. That's what I had in my head because I didn't think it was a big deal at the time. I just wanted to be the fastest person, and so I was out within four days.”

Olivia recovered incredibly well and life returned to normal but with monthly scans.

A year later it was determined that the optic nerve tumour had grown to the point that it needed to be removed, and so she once again had to undergo high risk surgery. This time around the surgery hit her hard, not just physically but mentally and emotionally too. She struggled with the knowledge that once again she had no real choice.

Although this tumour was much smaller at the time the surgeons explained that because it was so close to her optic nerve it needed removing urgently, before it grew more, as it would become harder to get the tumour out without leaving her blind. At the time she was 16 and starting her GCSE’s and desperately did not want to have surgery again. If it was left longer and grew it would engulf the optic nerve anyway, leaving her blind in that eye. “It was a massive kick in the stomach for me because I thought I had done my bit, I’d had brain surgery once that's it now. Literally less than a year later they said that I had to have that one out as well, I'd had a very different mentality for that first operation. I didn't have the same mindset at all going into the second one, because I didn't think I'd have to do it again.” Unfortunately, she lost sight in her right eye during this surgery as the optic nerve was cut. This time Olivia really struggled with the enormity of what had happened, and with the trauma and difficulties of her recovery.

“There are so many parts to surgery that people don't quite realise happen. When I woke up I couldn't breathe and I couldn't see, I was completely blind. I know now that that's just a side effect of the surgery. I'm convinced that it was harder because of my mentality as I went into the operation because I did not want to, I was not hopeful. I was not positive. I was just doom and gloom. I'm a firm believer that you change how things are by your mentality, and it's just proof for me with those operations. I did not think that the second one was going to go well and I came out of it half blind.” A very difficult period followed, and within a few days of being discharged she was re-admitted for emergency surgery as CSF fluid (the fluid that protects your brain) was leaking out of her nose. She desperately did not want to have to go back in or to have another operation. She did not want to miss her GCSE’s, her prom, or be anything other than a normal teen living her life. It was only very recently that she felt able to address the PTSD that she suffered from as a result of the trauma of those difficult years. “I didn't realise because I was so young the effect that it had had on me until last year when I said to mum, ‘I actually need help now.’ I went through a lot, but it doesn’t click in your head as to why you're feeling that way. I had PTSD and I had recurring dreams every night, my dream was actually me being wheeled into the operating theatre.” Looking back at that enormously challenging and traumatic time now, Olivia is clear that the most important thing is realising and emphasising the importance of looking after your mental health. Because your mental health will be key to how you adapt and cope with the challenges NF2 can bring. “For me, it's as much of a mental battle as it is a physical one. As I said, I am so certain that my mentality going into those last two operations had an effect on the outcome.”

It is this belief that underpins her commitment to her new role for NF2 Bio Solutions as their Youth Ambassador. She is working on building a supportive online community for young people living with NF2 around the world because she believes firmly that through their shared experiences, and the insights they can offer each other into their shared yet unique rare disease, they can support each other in very meaningful and powerful ways. “I think it will be amazing for everyone's mental health. It will be really inspiring actually, to speak to all these different young people that have been through similar yet different experiences. To see what they've faced, and how they're still carrying on with daily life. I really want to make people recognise that waking up every day and living every day fighting this condition is amazing. I'm really trying to send out the message that I believe that this condition is not a weakness. It's your strength.”