So really it wasn’t practical for me ever to go back but sometimes I’d think, you know, maybe I made a mistake when I’m being sort of selfish, maybe a made a mistake and I should have just… kept my career because they certainly don’t look after carers, they’re on their own.

I: They are, aren’t they the carers?

Mmmm and they get a pittance and outrageously over the years we’ve been in this council house and I’ve had the DWP phoning me up and saying can you tell me why you’re not at work and if you can’t tell me, you know, then this is going to happen

I: Sorry who is that?

The Department of Work and Pension

I: Yeah, yeah

xxxx are representatives of the Department of Work and Pension saying what we used to do at first was much, much nicer and more dignified, they used to say, are your circumstances as an unpaid carer still the same and I would say yes, I’m afraid they are, fine, thank you. But now it’s completely aggressive, confrontational, threatening letters, you know, explain why you’re not at work, I mean I’m retired now anyway, past retirement age so they’re not doing that to me anymore but they were doing it to me and I objected very strongly and I told them, they said do you know how much unpaid carers save the state and you’re accusing me of only wanting, having to explain how I’m not at work when I’m looking after somebody.

So, have you ever gone to social clubs?

Yeah, I used to join, I used to belong to two. One special needs social group and one `normal’ social group but they both got closed down because of financial reasons.

OK, could you talk to me about those social clubs and when did they get closed down?

They got closed down… how long ago was it? It was quite a while ago they got closed down, but it was because of the funding. So, they lost their funding which was hard because I was enjoying it. I was enjoying the activities they were doing. They were doing like games, cooking in one of them. All different types of stuff. I think one of them did like a spa where do you like nails and stuff.

Oh! Absolutely fantastic. I love those things.

Yeah?

I love spas and nails and so on. I’m a girly girl. I love those things. How about you?

And they did like painting, drawing. In the `normal’ one, they had a basketball court next door. But it was near a high school, in a… I think it was like a youth club place and there was a basketball court next door, so they were able to use that if we wanted to play basketball.

OK. And that closed?

Yeah, because of funding.

OK and how did that make you feel?

It was hard because I was enjoying it. I enjoyed seeing people.

Did you have friends?

Yeah.

But lots of our helplines as unpaid carers has been cut through the decade of austerity so, you know, you can try in vain when you need help but there’s really nothing there or the organisations have, have limited their, you know, helpline to outside of 24/7. So the mental health team are not there and xxxxxxxxxxx that there was at one stage, you know, about I think probably during the last Labour Government when there was a lot more stuff, it was still xxxx and struggling as a carer not feel on your own and you had to look for everything but if you looked there was something out there but now you can look and you won’t find anything basically, so it can be really lonely.

When I first moved back to my Dad’s, there was a local HIV charity that covered the whole of [County] and [Area], and I got involved with them quite a lot and I ended up a trustee of the charity as well. But then the director of services passed away, and the new management that came in took the charity in a completely different direction, they stopped the HIV drop ins, they stopped all the clinic work, they stopped all the counselling, they stopped the massage therapies, that all got stopped.

I: Was it an austerity thing? A measure?

It was not applying for the right funding. The lady who took over was very much inclined towards lesbian support, and although she was a fundraising manager, which was what she was originally hired as, she hadn’t spent any time in the HIV sector, and she reverted the charity to what she wanted it to, and she didn’t apply for the HIV funding. Cos obviously and as I was a trustee, I saw the funding applications that went in, so she took the charity in a different direction. Now the charity itself offers no HIV support at all.

I: So, it dropped it completely?

Dropped it completely. And it is now an LGBT charity.

I: So, so I’m presuming that had a lot of impact for a lot of people?

Yeah. There wasn’t a massive community of HIV positive people in [County], but there is a smallish one, I think it’s about 350 people. That’s for the whole county of [County] If you look at London, the HIV positive numbers in London are in the thousands, and that’s just in one town.

I: I understand that. But three hundred and so people are still not negligible.
Oh no. And when all the drop ins and everything finished and the, and the therapies finished nobody had a way of contacting each other, because you didn’t, you tried to, because Facebook’s so open, you didn’t have people on Facebook because of the links of , “Oh he’s got HIV so you must have it,”

I: I didn’t understand that. Sorry could you repeat that.

The links, not everyone’s as open about their HIV status, a lot of people who were there, their close family didn’t know they had HIV because they weren’t able to tell them. So, all of a sudden having a strange group of friends who some of them are very open about HIV status, [um] would then, could then possibly out somebody.

I: Mm.

R: So, people didn’t friend each other on Facebook so when the drop-ins stopped, there was then no contact between the people. There was, and that network just disappeared overnight.

I: That must have meant, made a lot of people lonely?

I assume so. Yes.

I: What about you?

R: I felt very isolated and lonely. Cos, I went from having a group of people who understood the HIV, to not having anything at all.

I: What are your thoughts on this, do you think it’s true, do you think it’s just for specific people?

I would imagine it can be for elderly people when I’ve done sort of political campaigning from door to door the ones that want to talk are elderly people and you can see that they’re, they don’t see anybody or speak to anybody and it’s heart-breaking really. And particularly here, and I used to have [um] another lady I used to do [um] what they call BBC buddy things which was like showing people how to use a computer and things, you know, that don’t know.

I: Yeah

And I had a lady who, I don’t know whether she’s autistic but she’s elderly and she used to beg, she used to say xxx can you not get the community centre, can you not get something going and [city] is actually the biggest place in [County] and to my knowledge it’s still not got anything like that, there’s nothing for elderly people to go on, and sit and have [um]. The Methodist Church here does and they do an absolute marvellous thing of giving people reasonable cheap food and coffee but it’s tiny, you know, its’s just got a few tables in and, and there’s a desperate need for places for elderly people to, to meet up and go. I think that would be a huge improvement for them if they knew they could get on the bus and go down to the town and go into a place where they’re gonna bump into their friends again and be able to afford a meal there.

And then, this is it, it comes as bit of double bind, a nurse approached me and said Peter Dr, I’ll not name this psychiatrist, so and so, Dr wants to see you and she just said to me, you know, why, and I said when am I going home and she said you’re not so I asked her why, she said well you don’t, you don’t speak to people, you don’t speak to staff, you don’t mix with other patients all you do is lay in your bed all day, I said I’ve got nothing to say, she said well if you don’t start speaking to people I will never ever let you out of here. So I started telling my named nurse about my voices and my paranoia and then when they got on ward rounds the same psychiatrist said we can’t let you go you’re too delusional with what you’re telling the staff, so I’d shot myself in the foot I was back in, I’m gonna isolate myself again because if I tell those people I’m going to be in here forever.

I:         So how did you get out?

R:        I learnt to tell lies. Are the drugs working? yes, and they weren’t. Are your voices there? No. Are you feeling paranoid? no. If I’m gonna be isolated and lonely I might as well do it in my own home.

Well I think which is started in some places now there’s Hearing Voices support groups on some psychiatric wards.

I: Okay

I could have met people with similar experiences, you know, I could have just walked up to someone that had been in the group like xxx if we’d have had one there I and I could at least told them about my experiences and what I was going through, I wouldn’t necessarily have wanted an answer but I’d have wanted someone to listen and if someone’s listening to me they see me, I’m not lonely anymore, I was lonely with these voices and these voices were difficult. And I remember on one occasion [um] I’d had a really bad sickness bug and I was on the ward and I went to, just vomited about six or seven times, it was in the early hours of the morning and I went to the staff and I said I can’t stop vomiting I’ve been vomiting about six or seven times and just, well you’ve coped with it about six or seven times, carry on and that was it.