Spotlight: Brighton & Hove Speak Out Open Mic Events
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For our spotlight this month, Healthwatch volunteer, John Gough spoke to Alex Kaye - Self Advocacy Team Leader for Brighton & Hove Speak Out. Alex leads on Speak Out’s Open Mic Events, one of which John was able to attend on Wednesday 20th May 2026. Read their conversation and John's observations below.
Open Mic Events
The Brighton & Hove Speak Out Open Mic Events are an opportunity offered to people with learning disabilities to air their views on various issues that affect the care they receive in the local community. Alex hosted the event and encouraged people attending to speak about anything they wanted to.
There were concerns raised about communications in general. People felt that NHS staff in certain circumstances were unable to convey information to people with learning difficulties in the right way, and this inevitably tended to create perceived health inequalities.
When attending NHS clinics or hospital appointments, it was felt that there could be more access to a Learning Disability Nurse. For example, one of the participants told us that after attending a hospital for a test, he was kept in for twenty-four hours, but it had not been made clear to him why he was kept in, which he found frustrating.
The consensus was that supported living in the Social Care sector was generally good- but there was a noticeable lack of staff in some areas, leading to problems when trying to plan a trip out somewhere as you had to arrange it a long way in advance to get a staff member to accompany you.
There were general concerns raised about the impending closure of Wellington House which is the last remaining council-run day centre for adults with complex learning difficulties in Brighton. People who attend this facility will be moved to other units which are already full, and the important trust built up between the Wellington House staff and the attendees would be lost.
How long have you been involved in the Open Mic Events?
“I've been at Speak Out for about four years - that's why I moved down here, to take this job. And we've been doing the Open Mic Events now for six to nine months, so it's a fairly new thing that we've started doing.”
Which organisations do you reach out to to promote / advertise the events?
“We have a couple of different avenues. Firstly, we have one of the commissioners at the council who has an email list, which is the Learning Disability Provider Forum, and so they send it out to all learning disability providers across the city. But we also work pretty closely with Grace Eyre and Amaze, and others like them.”
How much involvement do you have with individuals' problems, and how do you deal with them?
“A lot. One of the things we do at Speak Out is we have a one-to-one advocacy team. So, my job is more on the side of self-advocacy groups, which is sort of part of what this is about: getting people to raise their voices as a collective. But we do also have a one-to-one advocacy team that will help individual people with specific problems that they have.”
Do you find that GPs are willing to refer people with learning disabilities to organisations such as yourselves?
“I tend to find that it varies depending on the GP; some are better than others. Generally, most of our GP-based referrals will come from Social Prescribers within the GP surgery. I don't think we get that many directly from the actual doctors themselves, but the surgeries have other staff that will make these kinds of referrals.”
How do you manage people's expectations?
“I think we're in a difficult climate at the moment, economically. I think a lot of charities are struggling for resources, and we are a small team. The staff team is made up of 10 - 11 people, a lot of which are part-time, so we don't have a huge amount of time or resources.
“The amount of support that's required in the community is pretty big. Right now, people are getting less and less services from elsewhere, so charities like us step in to fill the void where we can. But it's hard for people with learning disabilities to necessarily understand why services are changing or closing down.
“There is an expectation that they're going to get a certain level of support from social care in general and that doesn't always materialize, so we have to manage people's expectation, firstly, of other services that are out there that might be waning slightly, and also what we're able to help with. Also, the amount of time we can give each individual person. It's tricky.”
Do you have any other future projects lined up to highlight learning disability issues?
“One thing that we do run quarterly, we call Open Advocacy Meetings, which are slightly different to these Open Mic events which are a broad, open forum whereas the Open Advocacy Meeting is a more structured day around a particular topic. We've done nine of those so far and we've got the 10th one coming up in June. So, we're looking forward to that, and hopefully we can do lots more of those in the future.
“We also have got more things coming up for young people. We have a young people's programme, which my colleague Sarah runs. I know that they're looking to bring some new initiatives in to try and bring through the next generation of self-advocates because that's important at the moment. We’ve got a really good team of self-advocates that are experienced, but we haven't got enough coming through from the younger age groups, so that's one of the aims now for us. That's the future.”
For the last one, what's your perfect holiday destination and why?
“That's a really good question. I think the way that I'm feeling at the moment, a nice, quiet Greek island would be lovely for me, because I need a bit of sun. It's been a pretty manic year, and I'd love to just lay on the beach for a week and do nothing, to be honest.”
Thanks very much to John and Alex.
Brighton & Hove Speak Out hold regular events and would love people who have learning disabilities to attend and meet others to share their views or concerns. Tea and biscuits provided!
You can learn more about Speak Out here. They can be contacted at either info@bhspeakout.org.uk or by calling: 01273 421921