Episode 12: Clare, Campaigner for Parent-Carer Rights

INTRO: Welcome to the Trailblazers Podcast series by Periplum, sharing the experiences of trailblazers living and working in the Tees Valley: the innovators, activists, workers and adventurers as told in their own words. Episode 12 Clare, Campaigner for Parent-Carer Rights Lynne [Interviewer] We're here on a spring day in Redcar in the Tees Valley with Claire. Shall we just start with your childhood and just want to tell me a little bit about where you grew up and what childhood was like for you. Clare [Interviewee] Yeah, sure, yeah, well I grew up in central London, literally 10 minutes from Tower Bridge. I grew up on a council estate with my mum and dad. There was just me because I'm an only child, and I always wished I’d had siblings and I'd look around at all my friends that did and kind of feel that maybe I missed out a bit. Um, I went to local primary and secondary schools and had my grandparents and family living quite close by. So it was quite a close knit community, and I'd say I had a very just normal, uneventful childhood. Happy times with the family getting together, with the relatives at Christmas and holidays and things. Um…I remember having my first holiday abroad when I was 7, ah which was quite exciting because it was quite, um, early on in the [19]70s and we flew to Malta, and that was our first taste of being abroad, in the days when you've got a holiday of 14 days. So that was amazing. [laughs] And I kind of carried on at school in the local area. Um, I always had a burning desire to escape Bermondsey and not live out my whole life in the local area as my grandparents and my parents had. I don't know why, but I just had this, uh sort of desire to, er, explore and travel and, um, yeah. Lynne [Interviewer] So what was school like for you, then? Clare [Interviewee] School? Okay, so primary school was lovely. I think. Yeah, I had lots of friends and it was just a really happy time. I can remember us celebrating the original Queen's Jubilee in 1977, because my primary school was Riverside, and we literally were on top of the Thames in central London. So the Queen actually drove past us as part of the Jubilee celebrations, and we all stood outside school with flags, waving, and I just can remember that because obviously it was quite a thing when you're that age. These sorts of things stay in your mind. I could remember us as well, going to Hyde Park for a big brownie celebration all because of the Queen's Jubilee. So then it was like moving on to secondary school, which I was really excited for. I've always kind of had a passion for learning. I've always been interested in new things, so it didn't matter what it was, I just kind of interested if it was new. I wanted to always be part of things and I don't know whether that stemmed from being an only child and always seeking friendships and things. So at school I was like part of the choir, part of the netball team. If there was something going on, I just wanted to be part of it. And I wanted to be busy, and just going out and about. That was the positive side of school. The negative side of school is because I was quite academic and I was like in the top set, and I was a high achiever and I was always happy if I, you know, did well in my tests and things like that. That didn't go down well, obviously with other people. So I was severely bullied at school. I'd say I was bullied throughout the whole of my secondary school life, and that probably had more of an impact on me than I realized at the time, because at the time, I don't know why I felt kind of had to deal with it on my own. Again, I think being an only child, you kind of are very independent, and you often do feel that you've got to sort stuff out on your own. So, so that was a not nice part of being at school. But, but it didn't put me off of going to school, I think, because I still had really good friends and there was all these positives. I had like 100% attendance, as, you know, I wasn't away from school and it didn't impact me, like on my mental health as such. I was just a very shy teenager. Yeah. Lynne [Interviewer] And then what did you do when you left school? Clare [Interviewee] So when I left school, I didn't do very well. I did really good at my O-levels and then, unfortunately, not so good at my A-levels. So I didn't get the grades that I needed to go on to University. My parents said they're happy for me to stay another year and re-take, but at the time I think I was just feeling a failure and I just wanted to move on. So I got a job at Natwest Bank. That was my first job on leaving school and I absolutely hated it. It was so boring, and literally after 3 months I remember saying, I can't, I'm so unhappy and my dad was just like, leave, just leave, it's not worth it, obviously, cause I was living with my mum and dad, that wasn't a worry. So I started looking in the papers for, you know, local jobs and I saw a job advertised. It was for a company over in East London, wanting a lab technician. And because I've always had a passion for science, I thought, oh, that sounds interesting. Applied. Got the job and stayed there for 2 years. And that was kind of like branching out as a young adult. But while I was there, although I enjoyed it, I felt unsatisfied. Like, this isn't all what life's got to offer. Where, where should I be? And I remember kind of gone to get some careers advice and somebody said, oh, we've been really suited to nursing. And it wasn't something that I ever considered. There's no history of nurses in my family. So it wasn't something that I'd looked at, but I looked at it. And literally within 3 months decided this is what I want to do. Contacted 3 local hospitals and straight away, I remember contacting St. Barts Hospital because that was like the famous hospital in London, Guy's Hospital - equally famous, I was born there, but they both had like waiting lists of a year or 2 years, and I am a little bit, I think, probably impatient and when I decide on something I want to do, then I want to do it. So I remember ringing up the Royal London Hospital, which was north of the river, which for someone who lives in south east London, is quite a big thing culturally cause people just didn't normally cross the river, which sounds bizarre, but that's kind of how it was. Bit of the north-south divide on a different level, and they only had a 3 month waiting list so…put my application in and - literally in the March - and in the July 1989, I started my nurse training. And that was probably, yeah, the big thing that kind of opened up my life in terms of the people that I met, learning proper skills, getting a profession, having other opportunities. So yeah, that was like the best decision that I made. Lynne [Interviewer] So then a new career went on and you somehow ended up with the Tees Valley. Clare [Interviewee] Yeah Lynne [Interviewer] How, how did that take its course? Clare [Interviewee] Well. Lynne [Interviewer] And, unless a double question, did you get to travel? [laughs] Clare [Interviewee] Well yeah. So that's a bit of a sad thing. I've always travelled in terms of holidays. I've always been quite adventurous that if friends didn't want to come, then I'd book on a group holiday. So when I was a student nurse and my friends all had boyfriends and they were going off to Spain and I didn't have a boyfriend and I wanted a holiday. So I booked on Trek America and went away for 2 weeks with a load of strangers that I met at Heathrow Airport, and we travelled in a minibus around the Grand Canyon and Las Vegas and had the time of our lives. So, you know, it’s, that's the sort of, so I've done those kind of holidays where I've just gone off and done things a bit mad, not just your typical beach holiday, but unfortunately when I was looking, when I qualified and my plan was I'm going to go off to Australia, which was quite a big thing when you were qualified nurse - you do a year after qualifying and then you’d like the world’s your oyster. But unfortunately my world fell apart because my dad died very suddenly, um, he was only 47. There was no warning, and that just turned my life upside down. It triggered off depression in me. It was a really, really hard time in my life for quite a few years, so that impacted me on every level because I was a young person living in a shared house, just qualified as a professional, and all of a sudden it was just like everything fell apart. I couldn't cope with working, I needed to move back in with my mum. My mum's mental health fell apart so I found myself having to support my mum. Particularly, probably because as an only child you feel that weight of responsibility to care for your parent, and also because I'd just qualified as a nurse. Well, it was my job to help other people feel better. So I found myself back in, in that position, which was really kind of stifling and, and difficult. So I never got to get to Australia and do my travels as a nurse, which will be something that I do regret. But it's just - life throws different things at us and you just have to deal with these things. So, so yeah, that didn't happen. I met Michael who's my husband about 3 months before my dad died, and I think as part of trying to, er have a new life after my dad died, I kind of probably threw myself into getting married sooner than I perhaps would have. So that was a different, my life then went on a different sort of path, if you like. Lynne [Interviewer] Yeah. So how did you and Michael meet? Clare [Interviewee] So, me and Michael actually met in a shared house. So when I'm qualified as a nurse, I had to move out of the nursing home. I'd lived in there for three years. It's what you did back in the day. And I absolutely loved it. And then, because I'd not lived with my parents for 3 years and I'm a young adult, I don't really want to move back in with my parents. So I looked again. Back in the day, you kind of looked in the newspaper for shared rooms in houses and things, and because I was working in East London, I found a shared house over in Leytonstone in East London and went and looked round, got a room in that house. There were several other professionals there: teachers, social workers, myself. And Michael was one of the people in the house, and he was just moving out of the house because he just bought his first flat over in Walthamstow. But that was how we crossed paths and we started dating and just things went from there. Lynne [Interviewer] So then let's move on to more recent times. So Clare [Interviewee] Yeah sure. Lynne [Interviewer] So you’ve come up to Redcar… Clare [Interviewee] Yeah. So coming up to Redcar was a real culture shock for me as a Londoner. Michael, my husband's from the Midlands, but the reason we arrived in Redcar in the first place was we'd been married for a year and we were living in London and Michael was looking for a promotion. I was a newly qualified health visitor at that time. I'd kind of moved on to community nursing and he was applying for jobs all over the country, much to the despair of my family. Lynne [Interviewer] [laughs] Clare [Interviewee] He then got offered a promotion in a place called Redcar that I'd never heard of. So I can remember us coming up on the train after he got offered the job and we were newly married and it was like, yeah, we're going to get our first home here together. And it was really terrifying [laughs] and a real, real culture shock. Having grown up in London, which was a very multicultural, diverse area, to move up to the North East with the industry and just the different kind of population. It was, yeah, it was very strange. And, um, so we spent our first kind of 3 years of married life in Redcar: myself health visiting in Southbank in Middlesbrough and Michael teaching at local schools. And after 3 years I was kind of like, I can't stay here, I'm really not happy and I think there was a lot of stuff going on. I was dealing with the bereavement of my dad. I was missing the, the sort of safety network of my family and friends from London, and my mental health just wasn't good. So I decided that I was going to go back to London. So I left Michael teaching here, and I got a job at the Brompton Hospital and went back and moved in with my mum and just used to come up to Redcar at weekends. Lynne [Interviewer] [laughs] Clare [Interviewee] Which we did for a couple of years. Um, and then Michael decided that he would relocate back down to London because it kind of wasn't the best thing for a couple who kind not been married that long [laughs] Yeah. So then we found ourselves in Dagenham, but we found we couldn't sell this house that we bought in Redcar. So we let it to one of the teachers at the school Michael had been teaching at, which turns out that that was a real godsend, because it turned out that a few years down the line, we were going to need a house to move to with our family. Lynne [Interviewer] Yeah. So you moved to Redcar with your family? Clare [Interviewee] We did. Lynne [Interviewer] And you've been here how long? Clare [Interviewee] Yeah, we've been here now 16 years. So I guess now I can really call Redcar home. Yeah, I am no longer in that culture shock. I mean, they say, don't they? Like home is where the heart is or whatever and because I'm here with my kids, with my family it’s, it is home now. But the reason we relocated up north was because myself and Michael adopted three children and, unbeknown, our children were going to go on to have various needs and disabilities, which meant that I would not be returning to my career as a health visitor, which again, wasn't something we planned. When I went on adoption leave, I was kind of that sort of professional thinking, oh, I'll have my maternity leave and then everything will be fine and I'll go back to work. How naïve was I? Yeah. Very naive. So what transpired was that one of our children needed very specialist education provision, and we actually couldn't find that in London where we lived. There were lots of restrictions, and we were literally at the point of thinking we had to home school our daughter in order for her needs to be met. And with Michael being a teacher and myself being a health professional, we thought, well, maybe it's time to relocate out of London. We've got this house that we rent out up in Redcar. Perhaps we need to reclaim that as home, move back up north where the cost of living is cheaper, so that one of us can work and one of us can home-school, because of the needs of our children. So that was the motivating factor to move back to the North-East. And a couple of years later, my mum moved up because she wanted to be near her grandchildren. And I guess the rest is history, as they say, because we really put down roots then. And I think the first trip to Redcar I didn't put down roots. I had the house, I had the job, but I didn't feel settled. Whereas once I moved up again with Michael, but with the children, it was completely different. And obviously your priorities change. Once you're a parent, it's not about you as an individual. It's what's best for the family and the kids and making a life then. So that's kind of how we ended up back. Lynne [Interviewer] That’s amazing. So if we can fast forward to now… Clare [Interviewee] Yeh Lynne [Interviewer] 'Cause the… Clare [Interviewee] Yes, of course Lynne [Interviewer] ...children are older… Clare [Interviewee] Yeah Lynne [Interviewer] And you are really involved in the local community Clare [Interviewee] Yes Lynne [Interviewer] …supporting other families. Tell me about all the voluntary stuff that you do. Clare [Interviewee] Sure. I will. So I've been on a bit of a journey myself as an adoptive parent with three children who've got special needs. Um, it's been a real rollercoaster, having to negotiate…meeting their needs through the education system, the challenges of social care, the health system, speech therapy, physiotherapy. You name it. We've kind of had to be everything to our kids, not just parents. So because of that, I've always kind of strived to try and help other people. And I guess that comes probably from having been a nurse and a health visitor and just the type of person that I am. I like to see things better for everybody. So when I've had to deal with something, I've kind of see whether then I can link it into helping other people. So on my journey, I've linked into being a volunteer with the local Parent Carer forum, which reaches out to other parents that have got children with special needs. So then I've got involved as a volunteer to help other families that are going through struggles who feel isolated because of the, the needs of their child. Again, I'm very aware of the impact on people's mental health, of being a parent carer and how your life completely changes when you've got a child that has special needs. You start to see the world through different eyes. You have to. The world and society try and force your child to be this square peg in a round hole. You feel as if, as a parent, you're constantly apologising for your child's behaviours and that you've got to defend yourself almost as a, as a parent and the choices that you make. So you find that on that journey you lose friends, you lose family who don't understand the position that you're in, but you kind of gain new friends and new family because you are on a different pathway in life. I remember about 10 years ago I went to Carers Together for a carers assessment to look to see if there was any support I could get. And one of the suggestions that the person said to me was, oh you, you obviously need a bit of a challenge. I think you're, you're wasted just being an at home parent. Have you thought of volunteering at Teesside University? And I didn't know about that but apparently they had a scheme where anybody who was a carer or lived with a disability could get involved and go along and teach students in the health and social care department at the University. So I found myself getting involved with that, and that was a bit of a lifeline for me, because I started going into the Uni[versity] and working with student nurses and social workers, and I kind of got the education bug again. So I did that for a few years and thought, oh, d’you know, I really feel like I want to get back into a professional job, but I didn't want to go back into what I'd left. I think I'm very much of when something’s finished it's kind of closed. And so I looked to occupational therapy and decided to retrain. So that was kind of like a door opening for me. And then that kind of led me on another little pathway. And then through my experiences, I've come across a lot of other adopted families who've got children with special needs. So I know my journey and I know a lot of other families have been isolated and don't know where to turn to for support. So about six months ago, I decided to set up a support group specifically for adoptive parents who've got children with disabilities just to try and bring people together as a peer group to support each other, and also to try and help each other access the support that we need. And that gives me a lot of pleasure in knowing that I'm helping people and I hope making a difference, because our children are the most vulnerable children in society, and society doesn't always do what it should to support them or the families. So I think that's a bit of a driving force. Maybe I'm a little bit of a rebel. I think when I was at school I was just er, well, I was head girl, let's say. So that kind of says it all. I followed all the rules. I like to achieve. I did, you know, everything sort of for me, and I did like a challenge. But as I've kind of matured and gone through life, I realised that you have to push boundaries, you have to challenge, and that society hasn't always got it right. There's a lot of things that do need to be sorted out, so I kind of probably see myself as a little bit of a rebel who likes to push those boundaries within SEN education and social care and the world of disability. So I think I've become a little bit of an advocate, probably more for the community in those areas, not just my own children, as my own children have grown up and become young adults, although I'm still challenged as a parent in meeting their needs, because I never knew that my kids were never going to leave home, because they're gonna always need to be in some kind of supported living. But I have found a bit of motivation and time to invest in projects to help other people, which does give me like a great joy. And one of those things is being involved in The Grenfell, because my daughter attends here as a day service and my kids have all come to the youth clubs here. Lynne [Interviewer] So can you tell us a little bit more about Grenfell and your involvement? Clare [Interviewee] Yeah, sure. So Grenfell’s actually been around for nearly 50 years, but it's like a bit of a secret in Redcar. People don't seem to know about it, but it's er, it started off as a social evening club for children with disabilities. And then over the years, it's branched out for adults. And two years ago it developed a day service, which was a godsend for us because at the time my daughter was leaving college and really needed a daytime activity. And Grenfell provides daytime activities, access in the community, to the leisure centre, to the cinema, arts and crafts, cooking. So it's a happy place. An, yeah, so because of that, we thought as parents we should really get involved so myself and Michael, it's a bit like being a school governor, I run the PTA. So we've joined the trustee board. And as trustees, we're now really getting involved in trying to help The Grenfell. The Grenfell’s always tried to, ah, well exist on charity grants, but in the last two years they've been cut back by 65%. So as you can imagine, that's put The Grenfell into a very challenged financial position. So we're kind of trying to use our skills and our knowledge to help The Grenfell on every level to get more sustainability for its finances. But also I'm kind of drawing on my skills as a nurse and an O.T. [Occupational Therapist] to bring in sort of more quality and more diversity into what the service provides, and we're trying to recruit more trustees who bring more skills into the club in order that we can develop and move on and keep up to date with all the other services that are out there. So, um, it's very, very interesting. And yeah, it's given me another kind of project. If you like, that I'm sinking my teeth into. But I do like a challenge. I don't like to give up. And I think we probably saw the advert at the right time. I’m, I’m somebody who kind of is a bit of a believer on things happening for a reason, like us not being able to sell our house and having that when we needed to relocate out of London. And I think when we became trustees, we literally found out that The Grenfell had less than 12 months to survive. If drastic measures weren't taken. So it really did need some people who were going to kind of come along and shake it up. And unfortunately, in doing so, that has triggered off some reactions in people who kind of just want The Grenfell to stay as it was. And I, we totally get that. But we know that if we don't adapt, we will not survive. So we need to build on all the good work of The Grenfell to make it even better than it is, but to ensure that its survival for the next 50 years, because it is a fantastic resource in our community. Lynne [Interviewer] So I can see if joined at a really challenging time. Clare [Interviewee] Yes. Lynne [Interviewer] What are the highlights to have been involved in The Grenfell? Clare [Interviewee] The highlights are I feel like I've gained a new family. I've met new lovely members of staff, the manager, the activity co-ordinator, people that I just knew on a passing level when I used to drop my children off. Now I'm really getting to know these people as individuals and I can see where within their roles there's things that need to be tackled, so I'm able to offer advice and help. So that's a real high. Meeting new people, making new friendships and also getting to know, you know, some of the people, other than my daughter that access the service. You know, I've made some new friends through meeting other parents. And I think this is why it's good to be part of networks, because you can feel quite isolated as a parent carer. Your sense of identity completely changes. You know, I think we're often our identity is rooted in our profession and, and what we do socially. And when you become an adoptive parent or a parent of a child with a disability, you can't pursue your personal interests any longer. I had to give up my career that really meant everything to me. And I guess I've, over the years, found new meaning in life and new challenges. And it's very much in the world of disability and I don't regret that at all. I feel that I was meant to be in this place at this time, trying to make these differences. So yeah. Lynne [Interviewer] So what are your hopes for the next, say, 20 years? What do you hope will happen, not just in Grenfell, but perhaps for some of the families you work with and the children and young people that you see coming into adulthood? Clare [Interviewee] Yeah. What I'd really like…so we know with disability it's a postcode lottery on accessing services - be that health, education, social care. I would love central government to have the pot of money that funds disabled families so that local authorities do not hold the purse strings. That if there was a central pot of money that families could access for all the needs of their disabled loved ones, whether it's physiotherapy, whether it's a specialist education provision, whatever is, I wish those changes, the cultural shift would take place so that we can give young people and all people with disabilities a better quality of life. That is what I would really, really like to see. I will do my part as an individual, as part of my local network, part of Grenfell, part of the Parent Carer Forum. I am passionate about developing my adoption support group, things that I personally feel really strongly about. So if I make an investment in something, it's not a two minute wonder, I will be pushing forward. So I see myself developing these areas and working with other people and trying to bring people together to work together, because I think there's lots of different little charities on their own that are struggling. But if we can kind of work together more, collaboratively, then we can achieve more for everybody. I'd like to see in my own family that my young people can progress and perhaps, maybe leave home one day if there were to be appropriate, supported living available. But again, this is an area that's been totally uninvested in and there just aren't the provisions available. So we've kind of got to think outside the box and try and see how we can help our young people achieve their goals and be happy and not just be a tick box for somebody. Yeah. Lynne [Interviewer] Thank you. So…we’re very near the end. And thank you for talking so openly. Who inspires you? Clare [Interviewee] Who inspires me? Well, that's a really good question. [laughs] Lynne [Interviewer] [laughs] Clare [Interviewee] I'm not sure. I'm not the sort of person who is inspired by sort of film stars or famous people, because that kind of glosses over me. I like people that have made a difference. So it might sound kind of a bit naff, but I'd be more sort of like, um Mother Teresa, and Martin Luther King. And I'm not trying to compare myself on any level with these. [laughs] Lynne [Interviewer] [laughs] Clare [Interviewee] I, it's just that I admire and look to those people in history who've made a difference for their own communities. And I guess I've always wanted to just think bigger than just being that little girl who grew up on the council estate in London, who's going to live in Bermondsey for the rest of her life and get married and not achieve anything. So I kind of…yeah, you know, I look to people and I'm inspired by those kind of people from all cultures. Lynne [Interviewer] Thank you. Is there anything else that you want to say? Clare [Interviewee] Well, I just like to say thank you for giving me this opportunity. It's really quite fascinating sitting here and having to reflect back on things like my childhood and things that I hadn't thought about for a long time, because I'm just busy getting on with life. I'm busy, not thinking about me, but obviously as a mum, you're always thinking about your children and the other responsibilities that you have. So it's been quite entertaining sitting here answering your questions. OUTRO: Thank you for listening to Periplum’s Trailblazers Podcasts funded by the National Lottery Heritage Fund. To listen to more of the series, and follow our projects visit our website at periplumheritage.com