Transcript from an Iriss podcast which aims to 'squeeze' information and inspiration from key influencers in social services in Scotland.
Michelle Drum of Iriss interviews Tommy Whitelaw, UK Project Lead of Dementia Carer Voices for episode 207 of ‘Freshly Squeezed on Iriss.fm (this link will take you away from our website).
MD Hello and welcome to Freshly Squeezed and Iriss podcast which aims to squeeze information and inspiration from key influencers in social service in Scotland, today I’m speaking to Tommy Whitelaw. For 5 years Tommy was a full-time carer for his late mother Joan who had vascular dementia, in 2011 he embarked on a walk around Scotland’s towns and cities to collect hundreds of life story letters detailing the experiences of individuals caring for a loved one living with dementia. Since then Tommy has engaged with thousands of carers through his Tommy on Tour blog and his UK project Engagement Lead with a Health and Social Care Alliances Dementia Carer Voices project. He gives talks to health and social care professionals and carer organisations across Scotland to raise awareness of the impact of dementia on families and the importance of empowering carers in carrying out their difficult but vital role, Tommy welcome to Freshly Squeezed.
TW And thank you, thank you for the welcome and opportunity.
MD Oh absolutely. So, you’ve had quite a journey then into the world of social services. Do you want to just tell me a bit about that journey?
TW Yeah, I think I stumbled into caring for my mum it wasn’t a decision I made initially. I was coming back, I worked in music and travelled round the world actually quite often for 25 years and was coming back to Glasgow for a little break, but I knew there was something different at home, I didn’t know what it was. I had no clue what dementia was, and I never knew who or what a carer was. But I was coming back to Glasgow for a couple of months, really for a break for myself and that 2 month break became a 4 month, a 6 month, a 10 month and a year and my mum was diagnosed with vascular dementia within …
MD A shame.
TW … that year. And really, I kept thinking, I’ll go back to work next month, I’ll go back to work … and after a year, I kind of had to make a decision and I decided to stay at home and not go back to work and try my best to care for my mum.
MD And so how then did you, you were caring for you mum but how did you go them into the area of social work and social services and working with the Alliance and all the rest of it?
TW Well I kind of stumbled into being a carer and I kind of was stumbling through it and I was struggling really and really I wanted to find out if it was just me that wasn’t able to do this, if it was me that was really struggling to be a good son or a good carer and that started with my blog, writing a blog to try and • because I couldn’t leave the house really, my mum needed a lot of care. For my own mental health, we were lonely and isolated and by writing a wee blog I could share how we felt but also ask other people and that led to the walk to collect people’s stories. So, I wanted people, to give them a platform where they could share their own experiences, so we can celebrate the good stuff but also ask questions of things that might not be so good. And that started off with a week, I was able back then in 2011 to get a week’s respite and I walked round different towns and cities to meet people and collect their letters, now, people started writing by the hundreds and the hundreds and now by the thousands from Scotland or England or Wales or Australia or America, from …
TW …round the world and sharing their stories, sharing stories about love, you know they’re incredible stories about the day 2 people meet and they have a look at each other and think, “I’m going to love you for the rest of my life.” Or a son, a daughter, a partner, a grandson, a granddaughter, all those things that make us all unique and remarkable, but they’re punctuated by loneliness, keeps appearing. And that was the campaign where I would then take the letters to the Scottish Parliament and ask them to read them, for a couple of years I’d go quite often there and just started campaigning and was lucky to be able to be interviewed for a couple of films. And then after my mum passed away, you go from a carer to a jobseeker very quickly, in fact you go within 8 weeks, you’ve lost your social skills, lots of skills, the only thing I knew what to do was campaign and I had been chatting with the Health and Social Care Alliance and they were looking to put a project together for dementia and caring and we joined up and Dementia Carer Voices was born and part of that work along with Irene Oldfather, was to harness the work of the campaign that I started when I was caring for my mum.
MD It’s an amazing journey.
TW Yeah, but it’s up and down.
MD What motivates you to get out of bed in the morning?
TW I think people, I think lots of things, I think our internal struggle as a son that I just wanted to be, I wanted to care for my mum the way she always cared for me. You know when I needed my mum she was always there for me and I found that hard, I struggled you know on reflection • and what gets me out is the people that write to us, the people that get in touch with us after it. There was lots of periods in it when I took the letters to parliament that I thought that would be the end of it but people kept writing and when my mum passed away I thought maybe I’ll go back and get a job now but I’ve been lucky to have this amazing opportunity to work on a project but it’s definitely people that get me out, it’s people over and above policies and strategies and all these things, it’s people that make letters really incredible to read, stories about people and I feel lucky to meet people who, professionals who use their skill, their knowledge, their training and their care to try and make it better for people every day.
MD So, what does a typical day look like for you?
TW Well one of our parts of our project is our You Can Make a Difference campaign where we’re travelling round the country speaking in hospitals, universities, colleges, care homes and speaking to health and social care professionals and the next generation and sharing my own personal experience, the experiences of people that have shared their experiences with us and asking people to think about one thing that they might do that will make a difference so, we’ve got a little campaign where nearly 19,000 hospitals, universities, colleges, care homes and individuals have made pledges. And you can go on and read every single pledge, they’re all typed up and they’re up on the walls of places so staff can use them for value based reflective practice but also to celebrate each other, so that we can, when we walk through the corridors of places that give care, we learn about the values of the people who work there not the values of an organisation but the values of the incredible individuals who get up every day to care for others.
MD Okay, so what’s your motto for life?
TW Timing is everything I think is really, I suppose it changes doesn’t it? It changes as years go on, I think trying to be kind, is how I’ve tried to do my campaign in the way my mum lived her life maybe as opposed to the way I live mine. And that’s my check every day, I have a check with everything I’m doing that would this fit my mums … how would my mum feel about this? Cos, I speak about her so often and I’m stuck with the thing that I can’t ask my mum, is it okay for me to keep speaking about you? So, kindness is my motto everyday to try and … and I’m trying to be kinder and I’m trying to give myself a kindness check every day.
MD So, do you have a book of blog that you would recommend to listeners?
TW Well, I think Atul Gawande’s Being Mortal has been one of the biggest change … it’s created one of the biggest conversation pieces and changes and even if you’ve not read the book, when you’re at events and you’re at a learning day it will be influenced, somewhere amongst that learning will be an influence coming from that book. I think it made people really take a wee bit of time to think and revaluate what improvement was, what quality of care was and what matter to people. Even more from reading it, from people that I’ve met along the way who have used parts of it within a presentation or part of their learning or part of their culture. So yeah, I’d encourage people if you work in care, wherever that may be, to read it.
MD So, what’s your music for motivation?
TW Well, I’ve got a really wide range, in my previous life before I came home to care for my mum I worked in music, I travelled with bands, I worked from U2, to the Spice Girls, to Iron Maiden and I ran all the global merchandising for bands round the world and travelled with them so after being on tour with a band for 8 months, whether you liked it or not by the time 8 months is you end up liking it, you know whether it’s your kind … so, I’ve got a really wide range of music actually and it changes a lot. I think from U2, to Primal Scream are kind of my favourites and Depeche Mode, there’s songs there that kind of motivate me when I’ve feeling a wee bit tired, I’ll stick my earphones on and it will keep me going.
MD Is there one particular song at all that you sort of like stick on?
TW It depends if I’m feeling sorry for myself, I’ll put U2s Running to Stand Still. I think it’s one of the most beautiful songs and maybe Primal Scream, Moving on Up that will get me moving a bit faster.
MD Brilliant. Okay, so who or what are your inspirations in your career?
TW Oh, there’s loads. I think people who dedicate their lives to caring for people, in this environment today. Today’s the 70th anniversary of the NHS, as we’re chatting and there’s conversations every day about social care and social work and the NHS and integration and what people do and I think there’s lots of people that inspire me. I see people every day and I go home from events and I’ll be doing a talk in a hospital and I’ll go and meet some of the people and I’ll walk out thinking, “Do you know what, I’m dead glad I met you today. Really glad I found out more about what you do and why you do it.” But there’s lots of people, I think maybe some nurses today as it’s the 70th anniversary of the NHS, I think we’re really lucky, as Fiona McQueen in Scotland, we’ve got a great Chief Nursing Officer and Jane Cummings Chief Nursing Officer for England, who have both been really receptive to listening to me. Shaun Maher, who works for Person Centred Care Scotland has been remarkable but I suppose and it’s not a political statement and it’s nothing to do with politics but I suppose when Nicola Sturgeon was the Cabinet Secretary for Health, I used to take the letters to her and she read in my blog that my mum was very poorly and she got in touch with me 4 weeks to the day before my mum passed away and she came over to my house and sat and held my mums hands for a couple of hours because she had read about her so often on my blog. And because I’d spoken about her at parliament and as she left that day she told me, “Just keep being honest, keep telling people how you feel.” And that kind of inspired me, it told me … cos the work I was doing back then was never about a protest, it was just about stories.
TW And that inspired me, I always wanted to take my mum to parliament cos I spoke about her there, but I was dead pleased the night a wee bit of parliament came to see my mum.
MD And do you think the government are doing enough at the moment (… unclear)
TW I think there’s so much more, firstly I think it’s easy just now to be hypercritical but there’s so much more needs to be done but we can’t take away from the amazing work that is being done every day and I think we have to celebrate a bit more that so that we make these jobs in these places where people aspire to go and work again and there’s enough conversations that’s not making people to aspire to do work in care or work in a care home or wherever that may be and I think it’s a duty of us all to tell true stories but also share the good stuff as well and inspire the next generation that working in care where ever that may be is a remarkable thing to do.
MD So, what one piece of advice would you give to those working or considering working in social services?
TW For me, I’ve worked on the outside as a campaigner or working as a project leader at Dementia Carer Voices but from what I’ve witnesses there is no more important, I don’t think, more valuable or more beautiful professions than professions that care for others and often that’s the most vulnerable in our society they’re caring for. But if anybody would try and explain to me that there’s a better profession then I’ve not been convinced yet, not from what I’ve witnessed on this tour. I see it every day and I would encourage the next generation, I would encourage anyone to … there’s so many career pathways as well, people think it’s a one stop but there’s great career pathways for people as well. But I think in all care, whether that be working in social services, social work, in a hospital, a care home well if there’s any more beautiful professions I’ve yet to witness them. I think often people think leadership is for someone else, it’s for the person above them or the person to the left or right of them, but my thing is that everybody’s a leader, it goes back to … and the one thing I would say that in working across all care, is the standard that we walk past each day is the standard we accept and the standard that we walk past each day is the standard we’ve just promoted, and I’d ask everybody to reflect, what are you promoting each day as you walk through the corridors of care?
MD What’s the one thing you couldn’t live without, Tommy?
TW I’d have to say Twitter cos if I say anything else people will think I’m not being honest. People, I think, kindness. Kindness and on a text side, Twitter I think. Social media, you know it helped me, I couldn’t get out the house, you know as caring for my mum and I’d lost my voice and it helped me find my voice back a little bit but I think just people, I think people are amazing.
MD So, people and Twitter then?
TW People and Twitter, not necessarily in that order.
MD Okay, well thank you. I’ve just got one last question …
MD for you, this is all about being Freshly Squeezed, your juice, how do you like it? With smooth, or with juicy bits?
TW I’m a juicy bits, I’m afraid.
MD You’re a juicy bits?
TW Yes, I am.
MD That’s the second juicy bits we’ve had, so, that’s brilliant. Tommy, you’ve been Freshly Squeezed today. It’s been a pleasure, thank you for your time.
TW Thank you.