It’s about a lack of understanding, even I didn’t have an understanding of mental health, and, and because of the different views in our communities about people who exhibit that kind of behaviour. I mean, they have this thought that if somebody goes a bit, -if they have mental health problems that somebody else has done it to them, they’ve put like a curse on them, or something like that. So there isn’t clarity or transparency around the issue, and maybe the solution is that they need, you know, you need more awareness in the community. You need counselling and therapeutic measures in the community.

Yeah there is a lot of stigma, and there’s also, I think, I think there’s, you don’t get anything until you experience it first hand. But I, I felt ashamed at times, I felt ashamed to say, especially in the early days to say, ‘Oh she’s got mental health problems’, and I didn’t know that she had mental health problems. So there is still a lot of stigma and taboo, especially because people don’t know the full extent of the illness, and how it manifests, and why it’s created. And I think that’s been part of the, -my journey, healing journey, understanding that it might have happened because of this, and this is how it looks like, and this is the treatment for it, some kind of rationale.

And my experience with carers assessments are that they’re only done now and again, or if there’s a good, you know, worker involved. They’re not done as a matter of course, so they need to be looked at. And the other worry I have around assessments is your explanation to that person, you know assessment is quite a punitive way of working with people, and I don’t know how we bypass that. It’s almost like we’ve got to overcome a load of hurdles before we get what we’re entitled to, and I’m sure it could be made easier.

Mental health is a state of one’s being, whether it’s mentally or physically that comes about because somebody hasn’t got the full set of faculties or factors that can make them whole. And it can be, it can be like minor pockets of stress that cause somebody something, or it could be minor pockets of depression. Or it can be, you know, a complete chemical imbalance, where people are having paranoid thoughts. But there isn’t a state of wholeness, and thinking is, thinking is jagged or whatever. But, I mean, like to somebody who has mental health problems they don’t see that. I know that when my mum was experiencing mental health problems that was her reality, that was her truth, so it’s just about perceptions. And, -but it’s difficult when you’ve not been through it, or to understand it to not be judgemental.

Yeah?

And what I’ve experienced in working with other carers is all these factors, guilt, responsibility, judgements, you know. A lot of the carers who I’ve worked with have said, ‘oh he’s doing it on purpose, she’s doing it on purpose. And it’s like making them understand that most people don’t do things on purpose, it’s really meaningful for them, you know, that’s how they see that, that’s how they see the world at that point. Because I know my mum would never, never do anything to hurt anybody. So, -and maybe as a society we’re not so tolerant, you know, we have lots of medical models where somebody’s like slightly ill, but we’ll pump pills into them without looking at what’s the cause of this?

How do you find the cause of it do you think?

By talking to people, or understanding their position, trying to communicate to them, and trying to, you know, like I said to you each person is individual, and gearing your, one-to-one with them. But it is so difficult finding good workers, and, you know keeping workers, and having therapeutic models and, -My mum when she had mental health problems she was sectioned, she was locked away in a ward with other people with mental health problems for six months. There were no therapeutic, they didn’t do anything, no activities during the day, all they did was monitored her medication, nobody talked to her.

Initially I didn’t know that I was a carer, and I didn’t know about what caring was. My story is that in 1984 when I was 24 years old, I was married at the time, and I had a phone call from somebody in our family saying that my mum was poorly. And when we went to see her, I mean, obviously my first reaction was like panic, ‘What’s the matter with her?’ When we went to her house, I hadn’t realised that she had been packing things up upstairs, and she had been sort of finishing things off, and what she said to me was, I’m going to die on a certain day, and, you know, like this is a particular significant day in the calendar. And I can’t remember whether she said, -she says, ‘Oh you’re coming with me, and your brother’s coming with me. And you know when somebody talks to you, and it’s not, it’s in those kind of terms, I mean, I just, -I didn’t at that time know that she had mental health problems, I just, thought -because she’s my mum- I thought maybe there’s some truth in it. You know, like, -and my brain was, my mind as engaged in thinking, ‘What, what is the truth around this, is there some truth in what she’s saying?’ Because, you know, what your mum says to you is real, -it’s really, -like, well you’re really secure in what a mother is and that. But I think the whole experience knocked me sideways, it really, -like the whole foundation for my life was sort of completely shaken.

For me spirituality is about, it’s about love, and it’s about finding love in oneself, and, and I was saying to you that I’d been on a healing journey. And about understanding what had happened, and, you know, forgiving people who you thought had let you down, when they hadn’t because they were doing the best they can. And about letting go, and it was about, it was about principles and values, which were all around, you know, what I wanted to be. I didn’t, if I’d harboured, -if I’d carried on harbouring a grievance against my mum, and not healing my past, you know I think I would have been quite bitter. So it was about going on my journey, and sort of finding ways to understand it, and to accept it.

And having been on that journey what are the core values that you have landed on?

About accepting people for who they are, valuing diversity in people, and just honouring people and their experiences. And not -as much as possible- making judgements on anybody for whatever reason, whether they’re ill, or whether they’re a carer, or whatever. You know. And I know my mum did the best she could, so I appreciate that, and honour that. But I think the other thing is that it’s made me a more, probably a more tolerant person, more understanding.

Yeah I think on a personal level I was almost robbed of something that was really fundamental to me. You know, to lose a mother, and to become the mother of somebody, and the whole dynamics change in our relationship. And at times I was really angry with her, because I was saying things to her, when I didn’t understand the illness I was quite, I wasn’t very nice to her, because I was saying you’re doing this on purpose, and why are you doing this? So our whole relationship has gone in a different way to what it could have done.

Yeah, yeah, but it’s about teasing out what’s going on, what the dynamics are.

Do you feel that health professionals do that?

No because I think they have a bias towards one or the other, and I think it’s also about resources, that if they were to sit equitably with all parties. But I think there’s going to be, there are going to be issues around the dynamics if they don’t do that, so half an hour with the carer, and half an hour with the person whos caring for them just to get their perspective. This is a difficult situation, because if somebody’s caring for somebody, and they say to the person whos assessing I don’t want my confidentiality breached, then the. The worker assessing them would have to honour that wouldn’t they? So it should apply for the person whos experiencing the problems. But I think where the problems are is when somebody’s really ill, and the carer is then, they sort of feel locked out of what’s happening.

A basic understanding of people’s backgrounds, and one size doesn’t fit all, so not all Muslim people will have the same issues, not all Hindu people. And it’s like taking each person on their face value, asking them what their, asking them on a one to one what it is about their lives that needs to be honoured. And it could be their language, it could be their religion, it can be their, like food, dietary, and it can be about their sort of take on life. So you can’t have a package, you know you can’t say well this is a package that’s going to fit all BME carers, it’s about tailor making, you know pockets of your service delivery, and trying to make people happy, or support them in that kind of way.

And what do you think are the main things that need to change, for that to happen within the services?

I think having workers, having more workers who have an understanding who are in mainstream funding, who don’t have to worry you know, about their funding, who have the support of an agency to, to support what they’re doing. A lot of the work that’s being done for BME carers is being done through the voluntary sector, it’s time limited funding, workers are part time, and they’re just good enough, there needs to be a more well thought out approach to carers.

Well if you want to do something you can do it, can’t you? And I think the excuses around funding, or not having appropriate staff, -but there is ample funding. My mum worked for the majority of her life, so she contributed to the National Health Service. You’ve got, you know, people there who you can train up and make, and give them the opportunity, so you can do things if you want to do them. And I think what happens is, mainstream services at -the National Health Service- it doesn’t want to go into that territory. So it gives pockets of funding to a third sector to pick up what it can’t do. But the third sector struggles, because it gets into stuff that it can’t cope with. For example I used to manage a mental health project, and I had 50 people who would come to use the service a week, and I was the only worker. And I had to do assessments when new people came in, look after the groups, look after a management committee, you know, everything, and in the end I was burning out so I left, but that’s what happens in the third sector. I think whatever happens to anybody in society is the responsibility of that society, so the National Health Service has a responsibility to gear its activities around supporting that person.