30 September 2024
This year’s Deafblind UK Conference 2024 theme is ‘standing out and fitting in.’ What does that message mean to you, and why is it important to the charity?
It’s important because we all relate to it. There are areas of our lives where we feel we need to fit in, and others where we want to stand out and be noted for being the individual that we are. As a charity that is supporting people to have the best lives that they can live, it is understanding both of those things.
We don’t want to generalise to the point where people lose their individual persona and their own path, and how they want to live their lives. But equally, it’s about making sure we have inclusion and equity, and that people can feel that they can belong, whilst also celebrating that diversity.
You are approaching two years as chief executive of Deafblind UK. What are your highlights from your time in the role so far?
It’s always the people – getting to know the community of people affected by deafblindness. That includes people living with deafblindness, but also their family and friends, the people who are looking after them, and the staff of the organisation. That has been an absolute highlight, and something that I want to continue to be involved with. In order to be relevant, we need to know what’s really happening with people on the ground.
Being recognised for our education resources has been fabulous too. That’s about ensuring that what we do is high quality as well as sustainable. Those are two really important things.
Since I’ve been in the role, we’ve built two more flats at Rainbow Court, our supported living accommodation in Peterborough. They are for people with more complex needs. Identifying some of those gaps in provision and doing something practical was really important.
Also, really thinking about how we can make more impact with our research. There is a real lack of research in deafblindness. What can our role be to fill that gap, and to facilitate that change?
In order to be relevant, we need to know what’s really happening with people on the ground
Education and research are particular interests of yours. What work is Deafblind UK undertaking in those areas?
I’ve got some past experience with education and research, as well as with nursing, and management and leadership. I’m passionate about disseminating what we know. If people don’t have the knowledge, they can’t do anything.
We, as an organisation, have a real role to play in disseminating that. That is the basis of inclusion, understanding and tolerance, and of creating a society that we all want to live in – a society that is cohesive and kind and supportive, and celebrates diversity. That comes from education.
When we talk about education, we talk about upskilling individuals. That might be the person who has deafblindness themselves, around how they can access technology or equipment to support them in employment. It is about educating families, so they understand how they can best support their loved ones who are impacted by deafblindness.
It’s also about our schools work and our community work, so that as a community we can support people better and celebrate that difference, and also learn from each other. It’s not a one-way street – it’s about all of us having different skills and experiences, and being able to share them.
We produce resources and support for the many, like our lessons in a box, which provide teachers with resources to make children aware of deafblindness. We’re now in 1600 schools, and we’re about to launch an earlier version, for early years and Key Stage One, so that we can do that intervention at an even earlier age.
But it’s also for the few – for those individuals who have very specific needs, where we want to really tailor it to that individual and their families.
Education, as we said, is about disseminating knowledge that we know. The research side is about developing new information. There has been a real gap in research into deafblindness. There is a lot of work looking at single sensory loss, and that might be clinical, social or psychological, but there’s very little on deafblindness, where you’ve got the two impaired senses impacting on each other.
It’s vital to understand that it’s a unique situation and context in itself, and therefore needs specialist research in order to be knowledgeable about what works and what doesn’t, and how we can do better, in preventing deafblindness, and in treating and supporting people living with it.
It’s vital to understand that it’s a unique situation and context in itself, and therefore needs specialist research
What is the most pressing issue affecting the people that Deafblind UK supports currently?
The awareness that this is something unique. People often have a preconception that if they understand visionary loss and understand hearing loss, they also understand dual sensory loss. Often, that’s not the case. You can’t bolt the two together.
We often compensate one sensory loss for another. You sometimes hear, ‘Well, if I can’t see well, I can use my hearing to give me clues.’ But if you’ve got the two impacted, it becomes much more difficult, and you might need different interventions. There needs to be a real awareness that this is a unique situation and a unique disability, and that we need to therefore have a unique approach to it.
That means we need to raise awareness, so we’re around the table for decision making. When we talk about informed decision making, we mean understanding, and having experts who can inform decision making. That needs to be at every level: government and local, down to community. That then affects everything else.
Social and healthcare issues need to be joined up. People are straddling the two service provisions, and those need to complement each other and be in place. For cohesiveness around care and support, we need dedicated leads for deafblindness. We need to be really clear that we’ve got specialists who are leading on that.
We also need to be centralised. Sometimes, we can lose coordination, because care is devolved to a very local level. We sometimes talk about our deafblind cohort being small. But actually, if you look nationally, it’s quite large. But in some communities, there are only a few cases, and that’s where people can fall through the gaps. Moving away from the postcode lottery is essential.
How important is it for Deafblind UK to include people with lived experience in service design and delivery?
Really important. We’ve developed an advisory group of people living with deafblindness, experts by experience, who come together as a group to advise us on the development of the charity and of our services.
They are also utilised as an expert resource for external stakeholders. That’s really important, and we’re looking to develop it. We’ve got 40 people at the moment, and we are looking to recruit more, so that we have a larger pool.
We are getting busier all the time, and that is absolutely at the core of who we are and what we do. It’s important that we have new people all the time, as well as retaining those that already are on there, so that we understand those people who are going through the system with newly diagnosed sensory loss, but also, over time, the needs of those people and how they respond to different things.
When we talk about being round the table for decision making, another good example is technology – how we need to link with developers to be able to tell them what the people we work with and support need, and then, as they develop the product, work with them to ensure that it’s developed in a way that optimises its use for our community. That’s an example where it’s about development of products that can enhance the lives of people impacted by dual sensory loss.
You have a background in nursing. How has that influenced or helped in your role with Deafblind UK?
It really ensures that you have a holistic approach. You look at everybody as an individual, and you work with them as an individual. You consider their psychological, biological, social and spiritual needs within that. Then, you can put together a package of support and signposting so that you maximise the positive impact that you can make. If we take out single strands of people or just different services, we can sometimes miss the benefit of that holistic approach.
Nurses are great collaborators, and that’s vital in the third sector, and in the sector of deafblindness specifically. It’s much better if we all work together. There’s no point duplicating what we do or being territorial. It’s about saying, ‘How can we do this better together?’
The third thing is that nurses are specialists in what they do, and in their area of choice. It’s the same for deafblindness. We’re specialists in what we do, and it’s about being really clear so people understand how they can come to us for that specialist support, and how other agencies can understand how we can add value to the support that they’re already providing.
From our point of view, it’s really important that we are clear what the specialism is, and that this is clear to other people, so they can tap into it and access support that no one else can provide.
Party conference season is unfolding right now. Do you have any specific policy asks when it comes to challenging inequality or making life easier for people with deafblindness?
We’ve got a number of asks. The first touches on making sure we’re involved in informing decision making. That’s not a specific policy, but it goes across policy and best practice. It’s imperative – if the government wants to make a real difference for this really important group, it has to happen.
The second thing, again an approach rather than an individual policy, is around a clear consensus across the four nations. We need an agreed definition across England, Wales, Northern Ireland and Scotland, and we need the policies to support that, so that as people move between the nations, their care remains consistent. We need specialists who are accountable for that local level of delivery, and so care packages are not only planned, but delivered.
What are you most hoping people will take away from the Deafblind UK Conference 2024?
For me, it's around people understanding that Deafblind UK is a go-to organisation for what they need. The agenda shows the breadth and depth of what we do, but also that we can be a hub for others to join us, to share those ideas, to develop new ideas, and to bring hope to all of those who are impacted by deafblindness, or may be affected in the future. I really hope that people come away knowing that they are part of our community, that they can tap into us for information, and that we can be that hub.
At a conference, where you bring everyone together, you’re the facilitator of many experts in their fields. This year’s Deafblind UK Conference has an international lineup. I hope people see that we can work together to build a better and brighter future for people affected by deafblindness.
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