CEO speaks of charity’s mission to be the ‘expert guiding voice for life after spinal cord injury’

NR Times speaks to Spinal Injuries Association (SIA) Chief Executive Officer, Nik Hartley OBE.

Winners in the Charity of the Year category at the NR Times Awards 2024, the SIA supports people with spinal cord injury in accessing the right support and navigating the healthcare system so that they can live fulfilled lives.

The charity campaigns tirelessly on behalf of the spinal cord injury (SCI) community.

Hi Nik. Please kick things off by telling us about your background and what led you to working with the SIA.

My whole work history prior to the SIA was within the humanitarian sector, focused on everything from education to conflict to the Ebola crisis.

My initial motivation was to give back in my home country and lead a national charity after spending so much working around the world.

I came across this cause, where 4,500 people find themselves with a spinal cord injury in any one year in the UK with 105,000 in total, and yet so many of them are unable to find the support and opportunities that they need to live a fulfilled life.

It felt connected to a lot of the work I’d been doing all my life. So I threw my hat in the ring, got the job, and it’s been an incredible six years.

You’ve already touched on this a little, but one of the key aspects of the SIA’s work is raising awareness of the challenges faced by the community.

Beyond that, what other initiatives does the charity focus on?

We set out three goals in our 2030 Strategy, which we’re now two years into putting into practice.

The third goal is for the public, the government and media to truly understand SCI and the barriers that people with SCI face.

One of the big realities for me as somebody coming in from the outside, is the realisation of just how little the public understand these barriers.

There’s the paralysis, the neurological aspects that impact your bladder, your bowel and your skin.

But if you say ‘spinal cord injury’, the public often don’t get much further than understanding that it’s somebody who uses a wheelchair, and almost sees that as a bad thing.

But the flipside is the truth: the wheelchair is an enabling technology for people with SCI.

Our number one goal is to help foster a healthcare system that works for people with SCI.

Over the past few years, we’ve worked really hard at connecting between the services.

We deliver great services to people who call us. It could be that their continuing healthcare has been removed, they can’t sort out their welfare or have been put in an old people’s home at 35.

We have always taken up those cases and fought them. But now we’re trying to join that to build evidence to then change the health and care system where it’s not working.

A big proportion of newly-injured people will go through specialist rehabilitation that is generally very good and sets them up for a good life.

But then when they’re five years on and they need to go to hospital for a day-to-day health issue, they discover a health and care system that doesn’t work for them.

We’ve made a real effort to join those two pieces together and we’re making real progress. But it’s an enormous and ambitious aim.

Quite a large number of your workforce and your trustees themselves have spinal cord injuries. How important is that in helping to drive the charity’s mission?

It’s everything.

Our purpose is to be the expert guiding voice for life after SCI. We can’t be that unless we are driven by the lived experience of people with or affected by it.

As the chief exec, 80 per cent of my board are people with an SCI, mostly wheelchair users, and something like a third of our staff are people with SCI.

Particularly frontline staff – the people who are able to go up to somebody’s bed and understand the total bemusing panic, concerns, worries that they have as a newly injured person.

It’s important that they can speak to somebody who’s got two children at home and has driven there in a hand-driven car.

Is there also therapeutic value for the staff?

Absolutely. For instance, we developed a specialist counselling service with fully qualified counsellors, but with one addition:  they are people with spinal cord injury.

In fact, in the first couple of years, we were almost hoisted on our own petard because the service became massively in-demand.

So we brought in two other counsellors, both with spinal cord injury, and now want to expand the programme.

This is a very challenging time for NR and spinal injury charities. How do you see that playing out over the next few years?

I feel both challenge and huge optimism.

In the past five or six years, we’ve managed to not only turn the business side around, but grow considerably

In just my time, we’ve gone from 29 staff to 81, plus all the volunteers.

We have 20,000 members and our aim is to double that by the end of the 2030 and we’re on course to doing so.

The funding is about growing our income, but it’s also about diversifying it and ensuring it is sustainable.

We have an amazing support base. We want to work more with our members who are always very keen to give back. We’ll work hand-in-hand to find new local funders as well as national ones.

We have some earned income streams. We’re well diversified these days across trusts,  individuals, major donors, foundations and corporates. We couldn’t do it without them.

But like everyone else, we need increasing, not decreasing, support. The need is enormous.

As I say, we’ve got 20,000 members. But there are 100,000-plus people who live with spinal cord injury in the country. But we’re confident.

All our services are growing, and therefore must find ways to find more investment to continue in that direction.

What campaigns do you have planned for this year? 

We’re going to continue to build on last year’s Paralysed Bowel campaign.

It won’t be complete until somebody can go into any hospital in the country and know that they won’t leave with an impacted bowel or be facing nurses and carers who can’t help them with their bowel management.

We’re also doing more on the intersection of SCI and women’s healthcare needs and we’ve got a big travel confidence piece going on at the moment, supported by Motability.

We want to do more campaigning on access to transport, as well as the broader aspects of transport.

If you’re worried about your bowel management, or you are in a place where certain public transport doesn’t exist, everything interconnects.

Coming from the humanitarian world, I often find myself asking, How is this happening in the sixth richest country on the planet?

I’ve spent my life working in one of the world’s poorest countries, where these kinds of struggles are expected. But here, people face unnecessary barriers just to live their lives—to have a job, a home, and a family.

It’s mind-blowing.

What can our readers do to support the charity and SIA community?

The support SIA needs most is from those working in the sector—champions who advocate for every person with a spinal cord injury to be connected to us as early as possible.

Ideally, this should happen within days of diagnosis, ensuring they are quickly linked to a network of support and partner organisations.

Otherwise, we see people coming to us five years later, saying they wish they had found us sooner.

For those outside the sector, we always welcome public support for our campaigns and work.

And of course, funding is crucial. I wouldn’t be doing my job as Chief Exec if I didn’t mention that!