Freshly Squeezed is an Iriss podcast which aims to 'squeeze' information and inspiration from key influencers in social services in Scotland.
Michelle Drumm interviews Lynn Williams, an unpaid carer and activist, providing practical care and support to her husband Derek. Derek has a high level spinal injury and other linked, complex needs.
Lynn is on the board of Engender, a national woman’s organisation and on the board of her local Carers Centre. She also works on a part-time basis in health and social care policy with Glasgow Centre for Voluntary Services.
Freshly Squeezed - Lynn Williams
MD - Michelle Drumm
LW - Lynn Williams
MD Hello welcome to Freshly Squeezed, an Iriss podcast which aims to squeeze information and inspiration from key influences in social services in Scotland. Today I'm speaking to Lynn Williams, an unpaid carer providing practical care and support to her husband Derek. Derek has a high-level spinal injury and other linked complex needs. Lynn is on the board of Engender a National Women's organisation and on the board of her local carers centre, she also works on a part time basis in Health and Social Care policy with Glasgow Centre for Voluntary services. Lynn a very warm welcome to Freshly Squeezed.
LW Thanks Michelle, Hi.
MD So you had a really interesting journey in to world of social services and it's not probably a very conventional one. Would you like to give me some information about that?
LW Well I guess when I was thinking about all this before I came in today about this whole, where I am just now I guess as a carer and a kind of a bit of activist of sorts I think, I think in a practical sense because I care for my husband, we've always had a kind of link with services to a certain extent, perhaps less in other families but my first awareness of being a carer or of that kind of whole world was when I was leaving Sills Development Scotland and I took a package and decided to take some time out and look at my own career and where I was going and at the time my husband's needs were changing quite dramatically so I applied for a job and got it and it was with what's now the Carer's Trust as a policy person and although I had done that kind of work in a bigger scale it was focussing on an area that I knew very little about despite being a carer. So, it was really from there Michelle that I became much more aware of some of the massive inequalities that people with disabilities face. Even when you live that as a carer with someone who is disabled you are not aware of the kind of wider kind of challenges out there and I became very aware of meeting carers for the first time, particularly those at the very hard end of caring and that opened a whole world to me that I had never been part of before, you know people with really profound disabilities who are living full lives as they could with support from their families but also the challenges that these families faced as well and alongside that journey I had my own journey as a Carer was developing too, so for example just around 2010 it was I think and we were kind of preparing for the Scottish Elections at the time with the National Carer organisations, my husband had been to see a, I'm trying to think what the word is here, an orthopaedic surgeon, there you go, I couldn't think of the, you can keep that in it's fine. And basically his shoulders were just, what his term were gubbed, just years of wear and tear in a wheelchair and from there we could see his ability, his independence going doing downhill quite dramatically so I was dealing with that at home and that was quite a traumatic time for us both and then obviously you're dealing with the kind of policy side of it so you're living the policy if you like. So it's been from there and I, as a carer we've had our own kind of mini battles, we've chosen to not take services because we know the reality, I know the reality and it gives you, I guess being part of this world gives you a real understanding of how things work and sometimes that's a good thing and sometimes it's not a good thing. So we've chosen in many cases not to take services and to cope on our own because we know financially what it'll mean for us, but also just the quality sometimes of what's out there just scares me as a carer so that kind of I guess it's like a road where there's two lanes and it's been that kind of journey into this kind of world and then becoming involved in things like the whole integration agenda. Being involved in the legislation in a professional basis. When I was with SCVO, I worked with the SCVO for a while and the whole kind of social security agenda as well. Now as a carer's allowance claimant, gives you a whole new perspective in a world that you lived in and you worked in and you see almost like a policy bubble sometimes where policies are created often with the best of intentions but the reality on the ground is very, very, different, so I guess that's what keeps me involved. I take steps back sometimes for my own mental health because if you're living that life and you're seeing, you're daily speaking to carers who are battling and just breaking, when speaking to you because they are breaking in front of you it's really hard, but what gets me going is that I just get really angry.
MD You just get really angry?
LW I get really angry at the injustice.
MD Because I suppose my next question to you is like so what really motivates you to get out of bed each morning?
LW My husband primarily because he needs me and there are times when I don't want to get out of bed in the morning it's hard. The last few years have been particularly hard Michelle so...
MD And what about this, you talk about anger.
LW Yeah, maybe, it is anger. My husband just laughs at me and he says oh Lynn for goodness sake just shut up because I rant at the telly and stuff you know, and I see like policies being announced and again they are meant with the best of intentions, but my question is well so what and what difference is that going to make so yeah...
MD And you are privy I suppose to the lived experience of caring as well as seeing and knowing a lot about this policy and it maybe not being as effective as you would like it to be and so it is a bit frustrating I can imagine.
LW Yeah, it's hugely frustrating. That is what gets me up in the morning, my husband primarily because he needs me and I've currently, I've just been told that I'm going through the menopause which has been pretty brutal and I kind of knew that and there are times in the morning when I just think pffff the thought of just another day is really hard.
MD I can be like a lot of the time to be honest.
LW Yeah so yeah but you have to get up, you have to get up in the morning and if you don't you just give up but there are times when it's a real struggle. I don't have the influence that I would like, I feel that what I can do is limited now whereas before when you worked in policy there was things you could do and when you're not part of that bubble you don't have that ability to change things and I get annoyed at that because I feel that I want to do more and bring people's experience into that. I speak to carers a lot and on a daily basis and you know you try and do what you can to help with what little you can even if it's just to listen and be there because the opposite is that when things are bad they are there for you and there's a wee world of almost virtual support for carers online and there is a group of us who speak to each other regularly across the UK not just in Scotland across the UK and so you learn a lot about UK policy from their experience and there is almost like a support network there that people are just there for you and that's amazing that there are times as a carer where you feel that you are absolutely incredibly alone and things get pretty black sometimes but you know that somewhere there's people like you who absolutely understand what you're going through so that's visually important and that's, I guess that's what gets me up in the morning as well is knowing people are there and hoping that at some point you know politicians look beyond the kind of the announcements they make. Often, it's for me, tinkering at the edges, it's not enough. I kind of want to say I know you want to do more but you need to be a bit more ambitious and that's what gets me going I think, that's what gets me on fire if you like.
MD Do you have a typical day at all or are your days quite different?
LW No, definitely not, no, it depends on a whole lot of factors, primarily my husband and how well he is will determine a lot of what we do. Also, how I feel now because there are times when I don't feel particularly great, the joys of the menopause so it will depend how I'm feeling as well but by in large it's dependant on how Derek is. So, it could be like we've got hospital appointments which are fairly frequent, in fact there is one this week which we are having to plan for because it's a brand new hospital, they don't have a hoist in the department so there's things like that, these kind of frustrations that are just, they might seem minor to people but for me they're incredibly stressful so I'm already thinking ahead about what that's going to involve. In fact we can't take the car because we can't get a parking space, things like that, so a typical day will involve things like that, generally, dealing with prescriptions, getting my husband up in the morning, making sure he's ok, getting his medication sorted, doing all the stuff that other Carers would do, doing things like this occasionally and I do work very, very, part time so that's good so sometimes I will get Derek up and we'll get breakfast sorted and I'll go in and do some work, we are doing some events just now with GCVS on areas like mental health and so on as well so that's good.
MD Have you got quite busy days then I would think?
LW They can be yeah and it's good because I hate not doing things, I just get really bored and I think for me when I gave up full time work to care, was, one of our friends said Lynn you're just going to get bored, so, and I do, and so I like to but it also means that hopefully in doing this kind of thing and speaking at events, which, believe it or not I'm incredibly shy so these things are really hard for me to do.
MD You're doing really well.
LW That's the kind of thing that hopefully just by sharing people's experience that hopefully people will just sit up and listen and say this, enough is enough. So there is not a typical day, it just depends on a whole lot of things and that's not a bad thing actually, in some ways you know for a lot of carers there are just lots of typical days where you're doing the same things and I guess I'm kind of lucky in some ways that I can dip my toe into things. Obviously, things allowing at home that I can do some things like this and keep my hand in and not go brain dead if you like.
MD And do you have a motto for life in all of that?
LW Well the motto is, it's crap but you've just got to get on with it basically. That's it. There is another word I substitute for that but yeah it's just some days are just really crap, you've just got to find the strength and keep going and you always physically, it's the only way I can describe it is see physically dig in deep and find a bit of strength to keep going and that's the best way I can describe it sometimes when things are pretty tough, you just pull that wee bit extra reserve out and just keep going because you have to.
MD You're amazing.
LW Oh not at all, there are carers who have far difficult similar situations to deal with than I do, and I don't know how they are still standing.
MD And, I suppose in a way you're carrying some of that as well because you are seeing that all the time.
LW It's hard yeah, it's heart breaking Michelle, I just. It is, it's heart breaking to hear some of the stories that I hear. We've got some friends who are dealing with some horrific situations around self-directed support just now and you see public services who don't understand the stress they're putting families under because they don't, they think in bureaucracy and in silos and don't trust people. So yeah, I guess carrying that, if you care about what you're doing, and you care about people who you love and the friends that you have, I guess it's like any friendships you see people and you see them breaking and that's just heart breaking you know.
MD Absolutely. I don't know if you get time to read at all given your busy schedule. Is there a book or is there a blog that you would recommend to people?
LW I haven't read much recently just with a whole lot of things going on, read loads during the summer and it usually tends to be a lot of really crappy stuff, doesn't tax the brain but I do read political stuff on occasion, a lot of stuff on Donald Trump just waiting to be read just now, probably I'll wait till I'm less angry before I do that. Wait till the mid-terms are over. There are books that I would go back to sometimes and I guess one of my absolute favourites and I must go back to it again, I did it a few years back after a gap was To Kill a Mockingbird.
MD Lovely yeah.
LW Because the story in that is about injustice and about inequality and I guess part of how I want to live, I try and live my life is to give an example and I see the rhetoric around benefit scroungers, it makes me angry and I think of To Kill a Mockingbird because Atticus talks to his children and he says that you can never understand a person until you walk in their shoes and I think that that for me, that's lived with me since childhood, since we read it in school as a teenager, that kind of, looking at someone you can never understand how they've got to that point. So, I see people who are on benefits, you know you see people going into our local chemist to get their methadone fix and I just see someone who's life has been incredibly hard, and I can't imagine what's brought them to that point. So for me that book just epitomises for me stands against that kind of rhetoric about benefit system and people who are scroungers and skivers debate as you can never ever understand at all anybody that you are seeing in front of you until you understand the journey that they have taken and live and walk in their shoes and seeing that so that book for me has stayed with me since childhood, it's just incredibly powerful. I must go back to it again actually.
MD It is a powerful story.
LW It is a wonderful story it is a classic case of good over evil. Definitely yeah.
MD And, I don't know whether you like music or not, but do you have a particular music for motivation?
LW I love music, music is my passion. I couldn't imagine a world without music. I have the most weird and eclectic taste, my husband says you've got the most eclectic taste ever. My husband is a huge classical music fan and I do listen to that. Currently one of my absolute, my friends on twitter will know this, is I'm a massive fan of Josh Groban, who's an American singer, has the most amazing voice and he has, he does a lot of charitable work as well so he's got a new album out called Bridges which I've listened to ad infinitum, know all the words and can sing it so there are some really lovely songs on that.
MD Good karaoke tunes for you then?
LW Well I don't know about karaoke but certainly in the car or in the shower yeah definitely. There is a couple of really good ones on that. There is a really lovely one called Won't look back about you know having a relationship with someone and not being able to promise them or you can't promise things are going to be good. You can't promise things will be good, easy but you won't look back because you don't regret being in that relationship so there's things like that that really, and lyrics really touch me so I listen to the lyrics as well as the tunes, as the melodies, so that's important. Others, Josh Groban's my absolute favourite, unfortunately he's in concert in England and I can't go and see him which I'm gutted about because I'm a carer, so these are the things but yeah, I love doing that. Came across a really, really, lovely, very talented singer called Nicholas Wells, I must tweet him on this. Nicholas is kind of an up and coming singer and he tweets to his fans frequently and he will include you in tweets and message you and things, he's lovely so he just seems like, writes some really, really, lovely, lovely, songs. And there is one called stumbling forward about life, about just you know how you live life and it's really, really, short and it's not a long time and it's about those challenges and you know moving on, that kind of stuff really, really, kind of, if a song really gets to me I get hairs on the back of the neck and it's a physical reaction for me so there's songs that just make me just kind of, aw wow that's amazing and I guess there's so, my musical taste is just so bizarre and so eclectic. Thea Gilmore is another one, she's a British singer, writes some cracking, there's a really lovely song called Rise, so many, so many, and music, music is just absolutely, without music I just can't imagine life without music for me. There is always music on in the house when I'm cooking, when I'm tidying up, there's always like, you know the iPad on, on shuffle so yeah, yeah, it's really important to me yeah.
MD Grand, do you have any inspirations?
LW Lots of people. A lot of carer friends who deal with things I can't even imagine so they probably get annoyed at me for mentioning them but they're on twitter anyway so it's fine. So, Fiona Fisher is a friend from Dunfermline who cares for her son Jonathan who has very profound multiple disabilities and is the happiest boy you can imagine, he's got the biggest smile, he's lovely. So, she is just, she cares for 100 plus hours a week and its pretty physical stuff. Another friend called Carol-Ann who again her daughter has got the most profound needs and is currently battling public services because they have massively cut her packages. Terry McCue, Linda McCafferty, all of them friends and people who are just standing up and not taking any nonsense and I don't know how they get up in the morning. My caring situation is difficult sometimes but it's nowhere near as difficult as theirs, so they just constantly amaze me. I don't know where they find the strength, I really don't, really don't. In the third sector world are so many people who, because I've worked in the third sector which is just an amazing place. People like Emma Richmond, Engenger. Emma is just an amazing woman, she is incredibly impassionate about what she does around gender inequality and being on the board of Engender, people like Talat Yaqoob, Talat is just, I love her to bits, if you know anyone who knows Talat she's so passionate about equality, is an incredible activist, also a carer herself, so yeah these are the people that just really when things are pretty crap you kind of look to people like that and think do you know what I, you can keep going and I admire them immensely for what they do.
MD Fantastic, and do you have one piece of advice that you would give to somebody thinking about working in social services?
LW It depends what they're doing, we know that some of these jobs, the actual paid jobs are incredibly badly paid like homecare and stuff and we've seen the recent kind of whole issue around equal pay and so on as well and that concerns me a bit because you've got people doing an incredibly responsible job for very little pay. That then determines who you might get into the job and that is a shame, but I mean for me what's often missing from social services, social work that whole social care field is humanity and I don't know how you measure humanity. I remember blogging for the health and social care alliance a couple of years back around this, around humanity in public services so for me if you're going to work in this whole field and you don't have a sense of humanity or compassion you're in the wrong job without a doubt because you need to have an affinity with people, you need to care about people and you need to step outside your own comfort zone and for those that work in places like procurement where we often still see these services as unit cost and people as unit cost rather than as people and until we change that we'll never change social care so yeah for those who are recruiting people who work in this field whether it's social workers, social care workers how humane are they? Do they care, do they absolutely care about what they're doing? Are they passionate about what they're doing? Because if they're not they're in the wrong job without a doubt in the wrong job and with that comes risks I think you know if you care enough for you to do that it's going to hurt sometimes you know. So that support structure for these workers is really important, so if you're an employer and a manager and you're not supporting these workers to do the best they can and giving them space to talk about what they're seeing because it must be incredibly hard sometimes. You know you're working with for example a terminally ill patient, you know, and you get really close to them, it must be really hard, can't imagine that so yeah. So absolutely humanity and a bit of compassion and the willingness to take risks. Managed risks, yeah absolutely but risks and I think it serves as face a squeeze as the risk management to the point of people not being able to live their lives. And you see that in the new views for self-direct support, we tried to go through the process a couple of years back and I just walked away, and I thought I can't do this because the process is purely on the risk to my husband. Now there was no risk, he's at home, he's being looked after and he's happy there, there was nothing about outcomes. So we need to be able to manage risk better and let go a bit and trust people, trust people to do what they know is right because they're not daft, people are not stupid, they live with risk all their lives so yeah so for me that kind of humanity, compassion and risk management and being able to let go and trust people.
MD OK, thanks Lynn. So, Lynn is their one thing that you couldn't live without? I know you'll have relationships that are really important to you but if you were to pick one thing what would that be?
LW Music. Funnily enough my family and music, family and music, my family is really important to me and obviously my husband, I'm forgetting my husband, sorry darling. Do you know actually that's probably a good point, it's terrible but he should have come first, you can keep this in it's fine, he will probably laugh when he hears it. You think about this a lot as a carer and a lot of carers around particularly around the whole issue of emergency planning and future planning, we don't do well enough at all is what happens if you're not there as a carer but I often think about what will happen at some point when I'm on my own and that will happen sooner rather than later because we've had this, my husband and I have had this conversation about death and what happens and I can't imagine a life without him, you know apart from being my partner, to care for someone who's your partner changes the relationship quite profoundly, people don't understand that emotional impact of caring and I often wonder how on earth I'll define myself when my husband's not here because it's always been Lynn as the carer and as my partner so for anyone who's married or you know if it's your partner whoever it is, so for Derek he's, he is my life, everything I do revolves around him and that isn't always the easiest. We don't often, but that's marriage for you, you know so yeah, so yeah, he, when I speak about things, when I do events it's him that drives that because people like Derek who don't have the life you know who don't have someone to support him and I fear you know if I wasn't here what would happen to him so yeah he's important to me and he drives lots of things that I do. Music absolutely is my passion and I honestly can't imagine a life without music, I really can't. I think it would be a much darker world without it and lots of friends who have seen me through some pretty dark times. A good friend called Morag Evans who's been through tough times herself and others Linda and others, Terry, hello girls I know you'll be listening to this, just knowing they're there at the end of a keyboard you know a text whatever just makes a massive difference knowing that they absolutely get you and you can say things and they won't ever judge you so yeah, yeah, yeah that's what matters yeah.
MD Aw Lynn well thanks very much for your honestly there and some lovely reflections indeed. You'll know this podcast is called Freshly Squeezed. At the end of the interview I ask every guest how do you like your juice, do you like it juicy or smooth?
LW I like it absolutely juicy with bits.
MD Juicy with bits it is. Lynn you've been freshly squeezed today, it's been an absolute pleasure.
LW Thanks Michelle.
MD Thank you so much for giving me your time today.
LW You're very welcome. Thank you. Cheers.