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Self-advocacy for adults with learning disabilities in Manchester

Headshot of Andy Needle of Manchester People First
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I'm Andy Needle from an organisation called Manchester People First

Tell us a bit about yourself

I’m Andy Needle from an organisation called Manchester People First. We’re a selfadvocacy organisation for adults with learning disabilities based in Manchester. We started in 1992, so we’re celebrating being 30 years old this very year.

We were set up in 1992 by a small group of adults with learning disabilities who weren’t happy with the services that they were receiving. And it was to speak up to make services across the board by the NHS, by police, by the City Council, better for adults with learning disabilities in Manchester. We were a ULO, which stands for User Led Organisation, which means all our committee members and board members have a learning disability and they choose the direction that the organisation goes in.  

 

In terms of your role, how long have you been with the organisation?

I’ve been here about 22 years, been working for the organisation, and I’m currently the manager, and I’ve been the manager for the past five years.

 

How have things changed in 20 odd years that you’ve been with the organisation?

Well, as an organisation, we started out and we were very part time as an organisation, we felt that our role was there to support individuals, to have the confidence to speak up for their own lives. And the organisation has now got a lot bigger. It was only a tiny, tiny part-time organisation. So we used to work Tuesday, Wednesday, Thursdays, we now Monday to Friday, and we now sit on lots and lots of different boards.

We are hopefully well respected by large organisations that if they want to know about people with learning disabilities, they will come to us as an organisation.

When we started out, we were really only there to support individual members, whereas as an organisation now I feel we not talk for people with learning disabilities, but we help them get the services that they want. We’ve got a lot more members that we speak on behalf of when we attend these meetings.

But I think for me as well, the most important thing is that we’ve not lost the sort of ethos of our organisation, that there’s no point talking to me about what it’s like to have a learning disability, talk to someone with a learning disability. I’ve got 20-odd years of experience, but I don’t think it’s right that I talk on behalf of people with learning disabilities. I feel like my role is to support someone with a learning disability, to attend these boards, or to speak up for what they want because they’ve got their own voice.

And I think as a self-advocacy organisation, that is the main thrust of our organisation, to allow people to use their voice to tell big organisations what they want.

 

What are the main sort of issues that your members raise about their health and social care? Are there any topics that come up regularly?

Before we even get to people being treated for actually going for a service, whether that be GP, dental, hospital, whatever it might be. A big thing for us is barriers to information. Always has been. Sending letters out to people that are not accessible for people to read, barriers to attending appointments, barriers when they attend the appointment.

Obviously another thing as well as that is that lots of things are being pushed online now. So that’s another massive barrier for our members.

 

What are the main things, then, that could be done to make sure that websites are as accessible as possible?

I think the frustrating thing is we could find the best GP in the whole of the world, in North Manchester, let’s say, and that GPS, because they’re all set independently of each other, will not take on that. So even if you’ve got an amazing model that ticks all the boxes, because they are all independent of each other, they don’t have to pay any attention to each other. So if we came up with the world’s perfect internet website that we know guarantees people that the other GP practices don’t have to do that, you know what I mean?

 

Is there’s a lack of willingness to make these changes then?

Yeah, well, we know that because when we did the internet access project. It went back to the GPs, and then the GPs said, “it’s our web designers”, and then the web designers said, “we’re meeting the minimum of the AIS, the accessible information standard”. I don’t know how to solve that, and I don’t mind doing the pieces of work. It’s really good to see that some GPS are engaging with it

What other things? Well, I mean, I guess from the start, what I’d like to see is we’re doing these annual health check works, and we’ve been involved from the very beginning, and that’s what I find with easy read stuff and accessible stuff is everybody does all this work and then it’s seen as a bolt-on. What I’d like to see is the easy read, accessible version being done from the very start of any process.

If it’s accessible for people with learning disabilities, it’s accessible for all. It’s easier to read, to be put into a community language.

 

Aside from accessibility, what sort of the other main issue would you say that is raised by your members?

One of the things that we generally always have is access to GP appointments. People really struggle.

 

Is that a consequence of Covid?

Yeah, it’s because everyone’s trying to get an appointment and not everyone can easily use the online website. They shut off the lines at 2pm, and then some of our members just can’t book an appointment. One member basically ended up swapping his GP because he couldn’t get an appointment.

 

Finally, is there a particular part of healthcare which you’re especially interested in?

I think from personal experience, my partner fell over and broke a wrist about six weeks ago. Basically, we had mixed response using A&E. So we went on Monday morning. Three hours done and dusted; x-rayed; yes, it’s broken. 1s No problems. That’s alright.

She was then waiting to see the fracture clinic, went over on it again and compounded the fracture. I took her straight away to the same A&E. She had a nine-hour wait.

I think the NHS is brilliant, but I just think if the GPs were doing their bit to take pressure off the A&E, we won’t have any of this. I mean, I know that there are massive pressures and stuff like that. I’ve never lose my rag at anybody, I never lose my temper with anybody in the NHS. But I do feel that if the GPs just pulled the weight a little bit more and opened the surgeries up a little bit more, then that would take a lot of pressure off the hospitals.

But saying that, I’ve got to ‘Big Up the Salford Royal as well.

So when we got taken to an appointment to the fracture clinic, the fracture clinic was brilliant. The fracture clinic was absolutely amazing.

Thank you very much for your time Andy.

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