Leading the way

Ellie Southwood was appointed chair of the Royal National Institute of Blind People in July. She talks with OT  about key issues facing the sight loss sector


Can you tell me about your background?

I have quite a varied background professionally. Politics is an important part of my life – I am a local politician in north west London. I have worked in public service reform through policy and research jobs. The common thread throughout my career has been a desire to improve services – I am really interested in how organisations can be their best. 

I was born with Leber congenital amaurosis, a genetic condition that means that I have very little useful vision. Royal National Institute of Blind People (RNIB) plays a key role in my life, as it does for many lives. Working with our supporters and partners, we're changing wider society to create a world where eye health is prioritised, sight loss isn't a barrier and everyone can live their life with confidence.

My job is primarily a governance role – chairing and leading the board of trustees. I do think that part of what the RNIB is about is leadership by people with experience of sight loss. Ten out of 12 of the current trustees have sight loss and I think that sends a really clear signal that we are serious about this aspect of the organisation. 

What do you think are the key issues facing the sight loss sector? 

Public spending is a massive challenge. It is an issue that affects a range of areas. It is hitting the NHS in terms of cataract operations, it is hitting social care in terms of the support that can be offered. I think this is a real challenge for the sector in terms of making sure we are continually fighting for the importance of adequate funding and support at all points – in hospitals, in community settings and in charities too.

It is important that the voices of people who are most affected by sight loss are heard. Part of this is taking notice of the experiences of people who are going through the NHS as someone with sight loss or people who are at risk of sight loss. Are they getting treatment early enough to prevent avoidable sight loss? That is something that we are passionate about. It is a real challenge because the voices of patients and the voices of our community are not currently, in my opinion, loud enough. I would want to see their share of voice increased with all of us focused on how we involve people working hand in hand with professionals.

What does RNIB do? 

RNIB helps people to get the support they need. One of the things that I am always struck by, and actually makes me really angry, is the level of loneliness and isolation that still exists. I still hear stories of people who go home from an eye clinic on the bus on their own, and don’t leave their house for six months. It is really important that although we are not an organisation that can provide a service to everybody, we absolutely can be that place where people can get advice, get guidance and be put in touch with the right people.

A really important strand of the work at RNIB is advocacy. It is about changing the world, but also in a more hard-edged way holding people to account for not including a substantial portion of society. That includes legal rights so people know what to do when things go wrong. There are still examples, unfortunately, of discrimination in the workplace and other areas.

The organisation helps people with sight loss to lead a fulfilling life and to be included. This covers everything from learning to use technology to thinking about how to do everyday tasks if you are losing sight. How do you do basic things like cook and clean? A large part of the answer is in peer support. It is about speaking to other people. The RNIB’s role is to make sure that people are connected.

What do you find rewarding about being chair? 

It's a role that I am hugely excited about because of the time that we are in. I feel we are on the cusp of really significant change. For all of us working with blind and partially sighted people, there are opportunities for greater collaboration. At RNIB we are particularly looking to expand those partnerships we have within local communities, so that more people can be reached and more can be done – be that at the point of diagnosis of an eye condition in the optometry or clinical environment, or indeed in helping people to deal with their changing circumstances due to sight loss and how they can confidently go about their day to day lives, fully included in their communities, places of work and play.

I am excited about growing our community and making sure that blind and partially sighted people, in particular, are driving the agenda. It is a challenge for us culturally to learn to let go a little bit and use technology and digital tools to reach more people. We need to really listen to what those people are telling us they want and where we should be focusing our efforts. If we get that right, then it will be hugely rewarding.