Our CEO, Xiaofang Sutton, is running the London Marathon this year in aid of MACS, a charity which helps people born with a variety of rare eye conditions. We spoke to the charity’s CEO, Liz Bates.
What was your career path to your current role?
It's quite an unusual path. My background is working in the NHS. I was an NHS manager, and I worked across the whole of the NHS. In primary care with GPs, in general hospitals and specialist hospitals. I worked at a regional level: co-ordinating and reconfiguring maternity services across a huge area. And as a commissioner of health services as well as a provider. Finally, I worked at the Department of Health, doing some national programmes. So I suppose you could say I was on quite steep career trajectory.
Then I decided to try the NHS from a different perspective and I developed leukemia! Fortunately, because of the wonderful NHS, I recovered really well, but I did have to take ill health retirement. So it was a case of, ‘OK, let's take stock, see what to do’. So I started my own consultancy agency.
At that point I was offered a role at Cancer Research UK as a consultant for their primary care programme. Although I'd worked with charities before, I'd never worked in a charity, so I took that role. At the same time I was also invited to become a trustee of another charity, Deafblind UK, where I got to understand more about visual impairment and the impact that had on people’s lives.
And then after I finished my time at Cancer Research UK, Deafblind UK asked me to step in as an Interim Chief Exec where we explored some work around the future of the charity. But the role was based in Peterborough, and I live just outside Manchester. It was a bit of a commute! So I supported the Trustees to recruit their new Chief Exec, and then started to look for something that was closer to home.
I wanted to stay in the charity world and work with a smaller organisation that I could really help to develop and grow. MACS came up and it was a perfect fit. An absolute perfect fit. It was an area that I knew well around visual impairment. It also had the health element to it as well.
So here I am, three years later, still at MACS and loving every minute of it.
Was your consultancy work based particularly in the health industry?
It was mainly in the NHS, but also with some small business owners as well. I also provided executive coaching support, particularly with women, helping them to develop their careers and businesses and to just trust themselves. That's what it's about: it's about trusting yourself. You wouldn't be where you are if you couldn't do it.
Tell us a little bit more about the charity and what it does.
MACS is a small charity. We support children and adults who have one of three rare conditions: microphthalmia, anophthalmia and coloboma, which mean they are born without eyes or have underdeveloped eyes. Anophthalmia means lack of eye, microphthalmia means small eye, and coloboma is a cleft or a gap in the eye.
But what people don't always understand is that there is a really wide spectrum of how those conditions can affect people. At the most severe end, which is generally bilateral anophthalmia, children are born without any eyes at all, and have no optic nerves so will never have any sight. For many of these children this is often accompanied by other health conditions: such as other physical disabilities, learning disabilities, cognitive impairments or behavioural and emotional problems.
At the other extreme, some people with a MACS condition have a mild to moderate visual impairment in just one eye without any other complications, and are able, for example, to legally drive a car.
So we work with families throughout that spectrum of disability. We have to try and adapt our services to meet everybody's needs. That's obviously quite a difficult undertaking, but we are determined to make all our services accessible to everyone.
And the other side of it, which I absolutely love, is bringing people together. When MACS was formed it was a small number of families who came together following a newspaper article in the Observer which highlighted these rare conditions and a potential link to chemical fertiliser.
Anyway, they came together because they didn't know anybody else like them existed. They thought they were one-offs, because it was so rare. So they came together and they formed a charity which was initially about peer support. Where parents could talk to someone else going through the same journey who really understood. And then over the last 28 years it's just grown. More and more families have joined MACS, and it's moved on from just being that peer support to doing a whole load of other things.
Advice and support is still at the core of what we do. We have a helpline where anyone concerned about a MACS condition can contact us for advice. We continue to provide peer support where families, parents or people with a MACS condition themselves talk about their story to new families or those who are struggling, so they don't feel alone. So that's at the core of what we do. But it’s just one of our five key themes. The other four are making connections, confidence and opportunity, giving families a break, and research.
How exactly do you bring people together?
We run lots of community events where we bring families together. We call those our MACS Meets and Local Socials programmes: we go out and we put on local social events, and that's where the peer support comes in. Local families just get together and meet up. Normally in May we run our family weekend, where we invite all our families to come together and have a weekend away. Hundreds of children with MACS conditions running around the hotel. We take over a hotel! (Sadly, this year we had to cancel the family weekend as the hotel we use has gone out of business. Everyone as MACS was devastated by this news.)
Because these are rare conditions, many children have never seen another child who has a condition like theirs. I can't tell you how inspiring it is to see kids seeing other children for the first time who look like them and realising that they are not different, that nobody is staring at them or bullying them because they look different. It is absolutely wonderful. They make friends, and they're friends for life. It is unbelievable. We have adults now, who are still close friends with those people they met as children 20-odd years ago. It's brilliant.
What other sorts of work do you do?
One of our other themes is about confidence and opportunity. As well as the visual impairment, the nature of MACS conditions often means people have visible differences. Their eyes may be different shapes or sizes and so it can cause a lot of differences in the way children look. Many of our children need surgery to help the structure of the face develop or have a prosthetic eye fitted – and we're talking not just one-off. This is ongoing surgery year after year after year. As the face grows the size of the prosthetic has to be changed and they may need surgery to expand the eye socket.
Even with surgery or sometimes when a child says, ‘enough is enough, I don't want any more surgery’, they may still have a visible difference, which can make them stand out and, sadly, be bullied at school, which is really hard. Because of this, quite often our children lack self-esteem and self-confidence. MACS helps rebuild that self-confidence through two residential adventure weeks, where MACS children go away without their parents.
One is an outdoor activity week in the Lake District, with the Calvert Trust, where they really challenge themselves! They do rock climbing, hill scrambling, canoeing… you name it. The Calvert Trust is brilliant, because they are geared up to make sure all their activities are accessible for all disabilities. In the evenings, the children also do personal resilience building activities around talking about their disability and coping mechanisms if they're being bullied, and all those really good life skills.
The second one is a sailing trip. We take a smaller number away with Ocean Youth Trust South. They have a purpose-built tall ship, which is designed for to allow people with disabilities to participate. Our young people sail the ship. They do everything. They do all the rigging, they do the navigation, learn how to cook in a galley, everything.
It's absolutely fantastic. So those two things really help build self-esteem. What it does is it challenges the young person to do things that they never thought they could. They may know friends who've done similar things, but they never thought they would be able to do it. And when they realise they can, it is a different thing.
We have one young lady who started going on the sailing trip. She has significant disabilities and is noncommunicative. She comes on the sailing trip year after year, and she has blossomed. Last year, for the first time, she took the helm. She had a whale of a time. Her communication skills have come on, and it is all about being with people who understand, but also to be challenged to do things you wouldn't normally do.
We've also started doing a weekend trip for under-10s. Each child comes with one parent. We try to encourage it to be the parent who's not the main caregiver, so that they get to bond more with their child. But more importantly, they see what their child is capable of doing. Because there is a tendency – and it's not just MACS, it's many children with disabilities – that parents, for all the right reasons, are quite protective. And sometimes overprotective, because they're worried for them, as all parents are. But when they see what their child can do… one of the comments we had from one of the parents last year after watching their 6-year-old hill scrambling was, “That's it, I'm not cutting their food up for them anymore, they can do it for themselves!”
And that sort of realisation, that makes a huge difference for that child growing up. Their parents know that they can do things for themselves.
What are the biggest challenges that MACS faces?
The biggest challenge is awareness. Because they're rare conditions, it's not something that many people will have heard of, and that includes health professionals. Even some ophthalmologists and paediatricians don't know about MACS conditions, because they're not in the mainstream. So we do get some heartbreaking stories from parents who come to us not long after their children have been diagnosed and they’ve basically been told, ‘Your child's got micropthalmia or anophthalmia. There's nothing we can do’. And it's a huge shock.
They end up doing all the research themselves to try and find out what these conditions mean, and then they find us. So there's a piece of work that we're planning to do this year, which is about making more contact with hospitals, and also with social workers who work with disabled children, to make sure that they understand. And we're developing our resources in terms of what's available – not just for parents, but also for health professionals, so that they have access to them as well.
The other thing is the names of the conditions themselves, because they're totally unpronounceable for many people! It’s the reason we shorten our name to MACS, which stands for Microphthalmia, Anophthalmia and Coloboma Support.
Does that make it more difficult in terms of raising funds?
Yes, it does. Another issue that we have with the general public is quite often they don't believe these conditions exist. Before I started at the charity, some of my colleagues were doing a bucket collection and were accused of lying: “There’s no such thing. You can’t be born without eyes.” So we know that some are going people to say that.
That’s one in a million people, but still, for something that's very rare and that people are unlikely to witness, how do we get that message over? Once we talk about what the conditions are, what it means and how we help, actually, people are really receptive. Xiaofang will see that as part of Team MACS for the marathon: everybody who's been involved once wants to be involved again. We have so many repeat runners. It’s brilliant. And that's because of the community we create. And people realise actually what a difference you can make.
We've always been reliant on the London Marathon for our income – you asked about challenges, and over-reliance on the London Marathon was a big problem, particularly during the pandemic when the marathon didn't happen. At one point, before I came in, 80% of our income was through the London Marathon.
So we've been weaning ourselves away from that. And the pandemic has helped push us a bit quicker than we're planning! We've had to articulate what it is that we do and who we're doing it for, so that we can make applications to trusts and foundations. And also we want to start working with corporates as well. I think if we can tell people our story, the pull is there. We're not a charity that wants to play on heartstrings – ‘Isn't it terrible? Our poor children’. We're positive. Our children have a rough deal, so how can we make it better for them?
It’s all about empowerment. Everything we do is to help our children move on. And as I said, a lot of our children have grown up now. So our next step is how do we support our adults to develop their careers and move on in that circumstance?
One of my colleagues has a great analogy, which is: “We have a single box. All we need to do is have different shaped doors, so everybody can come in.” It's such a simple concept. So we're all about building different sized doors.
How else could LCN Legal help you? Pro bono legal work, fundraising events…
Certainly pro bono help is always much appreciated, because we don't really have the resources to do things like that. That would be wonderful.
We're very fortunate that we haven't had the need for legal support in the past. But we're growing, and that involves contracts and agreements and, in particular, service level agreements. We need to get a bit more savvy about doing those sorts of things. So that sort of expertise would be hugely beneficial to us.
What would be your ideal job if you had taken a different career path?
Well, my ideal job is one I would never ever get, and that would be manager of Manchester United Football Club. Although the way we're playing at the moment, I think I could do a better job! But actually, I love the job I'm doing now. I'm in a really fortunate position in my career that if I didn't like the job I was working in, I would just move. But that’s not a problem because I love working here.
What advice would you give your younger self?
Trust your judgement to do the right thing. Because all too often we do things and we think, ‘I'm not sure I should have done that’. If you're worried about doing something, don't do it. But I also say there are three really important questions to ask. Why are we doing this? What difference is it going to make – if it's not going to make a difference, do we need to do it? And then thirdly, and really most importantly, particularly in the charity sector, is Who's going to benefit from it? Because all too often the things we do are simply for the benefit of the organisation. And we forget that actually what's really important is our beneficiaries and what difference the things we do have on them. And if this isn't going to have an impact on their lives for the better, it's not worth doing. So you always have to ask who is going to benefit from this.
Our CEO, Xiaofang Sutton, is running the London Marathon in aid of MACS on 2 October 2022. If you felt able to make any sort of donation, we'd very much appreciate it. Here's Xiaofang's fundraising page.
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