Transcript: PAssport to Independent Living

Podcast Episode: PAssport to Independent Living

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MD - Michelle Drumm
LS - Lilian Smith
SL - Sharon Ledger
M - Mandy
L - Lizzie
S - Susan
Y - Yvonne
A - Alison

MD 31st of October 2017 marked the launch of PAssport to Independent Living, a published collection of stories written by Personal Assistants about their experiences of what it’s like to work as a Personal Assistant in Scotland, and to raise awareness of self-directed support. This project was supported by Glasgow Centre for Inclusive Living, the Workers Educational Association, and the Scottish Social Services council. Before hearing from the Personal Assistants themselves, we spoke to Lilian Smith, SDS Development Coordinator at Glasgow Centre for Inclusive Living, and Sharon Ledger, Education Coordinator at the Workers Educational Association, who gave us some background on the project and the intentions of the publication.

MD Okay Lilian, so PAssport to Independent Living, it’s one of a trilogy of publications that you recently produced around self-directed support. Do you just want to tell us a little bit about that or how it came about?

LS Okay, how it came about was that when we did the first one we, obviously we have a lot of materials here explaining about self-directed support, but we’ve had so much anecdotal evidence that learning from the experience of others is very powerful and we thought that a good complement to our standard, if you like, information booklets, it would be a personal stories book so that people could see it from that perspective and maybe perhaps be able to identify with some of the stories. So we produced the first one, which is “Direct Payments, Pure Dead Brilliant.” After that, about a year or so later, we were doing quite a bit of work with young people transitioning - it’s a kind of personal interest of mine - and we thought really we should be encouraging young people to take up direct payments because at the end of the day, they’ve got their whole lives ahead of them, being in control of their support arrangements, so that’s why we decided to focus the second book specifically on young people. So everybody in the second book at the time of printing was under twenty-six. So some people had just left school and just were setting off, and it talks in a fair bit of detail the kind of things that they’re involved in. Funnily enough, at that launch one of the mums who came along said “you should really be doing something for PAs as well.” We kind of laughed about it at the time though it did stick in my mind. So, I was still remembering that when we decided that our priority or (… unclear) this year in relation to my post would be looking at promoting PAs as a worthwhile and enjoyable career. So that kind of memory came back and what we decided to do was that we would do a third book of a similar nature, but this time with a focus on the PAs experience rather than perhaps the PA employer’s experience. What we did was the first two books for the stories are primarily the Greater Glasgow area. This time we thought that perhaps if we’re going to promote PAs properly then we need to show how PAs and PA relationships adapt to the rural setting. The urban setting you’re at a whole range of different circumstances. So that’s why this time we decided to go Scotland wide. Now obviously, we’re just a Glasgow project, apart from services we have in East Dunbartonshire and South Lanarkshire, so what I did was I contacted a number of organisations that I knew of in other parts of Scotland and they were fantastic at identifying people that would be prepared to share their story. So I kind of travelled out and about and interviewed those folk. Thankfully, we’ve got a great story from Shetland, and the SDS lead in Shetland was kind enough to organise that story for us, and colleagues in the PA Network helped us with the Inverness story. The other one’s sort of travelled about and we just interviewed the PAs and PAs employers. What we do is, after we interview them I draft a story, but then we email the story back and forward as many times as people want until we get the story that they want themselves. Once they’ve authorised that story, that’s how it goes into the book word for word. So - and in many ways it’s mostly their words anyway - all I, my role really was just kind of editing it together and putting it together.

MD And are there common themes across the stories?

LS Oh definitely! Very clearly, the amount of communication and trust that’s required. That successful PA relationships are where there’s a good communication, good trust, but where there are good friendships, you know? Good relationships, but at the same time not forgetting the employer/employee relationship. I think that’s where it’s successful, but certainly the thing that shone out the most was the quality of the relationships, and quite a number of people have said, you know, “when I interviewed so and so, we hit it off right away”, and one of the things that I learned was that, you know, skills and experience can be learned but it’s so important that people are sharing the same values, the same outlook, and that seems to be a real catalyst for making successful PA/PA employer relationships, and that’s not to say that problems don’t arise - and a few people in the stories do allude to that, but what they said was that “through good communication we were able to resolve issues before they got to a stage where it would be more problematic.”

MD So in PAssport to Independent Living, these stories that have been produced, what you’re hoping will be achieved is that more people sign up to be PAs or what are the hopes?

LS Yeah, what I’m hoping it’ll be two things. I hope it’ll be a learning experience for existing PAs. We certainly tend to use some of the stories as case studies in our PA training and obviously other people are welcome to do that as well. So we hope that it’ll be a really good learning tool because, you know, we were saying that parents and adults who are, so parents that have direct payments appreciate stories about PAs, I think appreciate stories to find out what experience other people are having. I mean, one of the things that came up very much in our PA training was that a lot of PAs feel isolated, and that is certainly maybe one of the downsides of being a PA. So I think to have things, opportunities like the book where, you know, experiences are shared, the PA Network where people can come together, you know? All these resources I think are really useful to give PAs maybe more skills and confidence, but we also intend to hopefully distribute it to, you know, job centres, colleges, anywhere where there are people that are maybe thinking about becoming a PA, because it’s one thing that the book illustrates is there is no particular past experience you need. The fourteen PAs in this book come from all kinds of different backgrounds, all levels of experience, and I think that’s another message we want to get over is that if you have the right motivation values, you have the potential to be a PA and have a very rewarding job.

MD And it’s encouraging I suppose, the PA role, is it encouraging the use of self-directed support …

LS Oh absolutely, yeah.

MD … and the different options that are involved there?

LS Well obviously people have to take option one, which is direct payment, to employ PAs. So people are taking I suppose what we would consider to be the most powerful and flexible choice. Now having said that, it’s a lot of responsibility involved in that, but there are a lot of organisations around Scotland like ourselves at the Glasgow Centre for Inclusive Living, and we provide, that’s our reason for being here is to provide support to people who are managing a direct payment, and there are lots of other organisations. So although yes there’s lots of responsibility attached, there’s lots of support out there as well. What we want to do is further develop our PA training. We provide free PA training for PAs in certain areas, and certainly we’d want to develop that further and use these resources actually to further that and hopefully and distribute them to other parts of Scotland, and hope that other organisations can use them positively as well.

MD So are you involved in this particular event today, the launch of this PAssport to Independent Living?

SL We - the PA Network - worked with Lilian at GCIL on developing the book initially because we wanted to raise the profile of PAs and raise the profile of PAs as a career choice - as a valid career choice - rather than just an added “I’m just a carer” sort of aspect, and we also want to raise awareness of the work that we do in the PA Network, and it was a really good way to kind of work in partnership and get it out there. We helped Lilian, we supplied a few different PA people, so people that we had been in contact with that could then contribute. So a few of the stories are from people that we’ve met along our way, so we put them in touch with Lilian.

MD Okay, yep.

SL So we did that. So really, yeah, it was all about raising awareness of the role of PA, raising awareness of our Network and what we can do to support PAs …

MD And what does the network actually do then to support PAs?

SL What we do is we provide a kind of peer support network across Scotland. So we do that. We have an online resource, we have a website, we have social media. Facebook, Twitter, Instagram - the usual kind of social media channels - and we also have an online forum which is a closed forum, so PAs can go on and chat and chat to each other. In addition to that, we hold regular face to face meetings. So we’ll have - it’s fairly informal coffee and cake kind of chats in different regions. PAs can come along, get to meet other people. PAs are often working in isolation, so it’s just having that other person that they can sound off to or get advice from, because no situation’s really unique or new. The chances are that if you’re coming across something, someone else has come across it before and they can help advise on how they dealt with a situation or where they went for information or help or advice. So we do that, and we also provide free and or subsidised training when necessary. So PAs that come along to the meetings will tell us if there’s training needs that they have, or we work with local authorities, support organisations, and we try and work jointly sometimes to kind of co-fund training throughout Scotland.

MD And is the PA Network, it covers all of Scotland and not just Glasgow?

SL Nope, whole of Scotland, yeah, yeah. So I think there are people here today from Shetland Isles, Inverness, Glasgow, Ayrshire, Lothians … many more that I’ve forgotten but yeah, all over, yeah.

MD No it’s an amazing way to share experiences I think.

SL Absolutely. Absolutely.

MD And if it is quite, Lilian also mentioned that about it being quite an isolating role, that’s having the ability to come together and to talk about …

SL Exactly, and quite often it’s nice when we have our informal events and you see people exchanging numbers and being able to then sort of meet up and have a coffee themselves separately because we all, you know, I work in a mainly office environment, and you have work colleagues, and quite often these PAs don’t, and even if they do they may not always see them on a regular basis due to shift patterns. So even, you could work in a team of six people but not see any of the other people that work in your team. So it’s quite a nice way for them to get a bit of peer support and help and advice if they need it.

Mandy, Lizzie and Susan relay their experiences of working as a Personal Assistant.

MD Okay, so Mandy, how did you get into working as a PA?

M Well, I’ll cut a very long story short. It was quite an unusual way. In about twenty-four years ago, twenty-five years ago, I was a bus driver in Edinburgh and I was on my lunch break and I used to sit in the Citylink lounge in St Andrew Square, and a lady came in who looked a bit lost - tall with red hair - and I asked her if I could help her, and she was American and she’d come from London. Her bus was late, she was supposed to be meeting a friend - that was before the days of mobile phones and things like that so it was just a very strange meeting. We chatted - we didn’t even tell each other our names - and we spoke about things that you generally wouldn’t speak about with a stranger. It was her first visit to Edinburgh. I had to go back on duty after about half an hour and I was driving to Queensferry - some nice parts of the city - and I said to her “would you like to come”, and “no, no I better wait to see my friend”, and so I said “oh it was nice to meet you, have a great time”, and went away. When I came back after I’d finished work, she’d left a little note saying “hi, my name’s Heather, it was really nice to meet you, I’m in Edinburgh for a few days if you’d like to meet up for coffee?” So, we met up for coffee, I found out she’d taken a year out of her studies, was travelling around Europe working, travelling, working, travelling. She was based down in Greenwich. So we corresponded by letter, old-style, and I went down to visit her in Greenwich and she was working as a PA, and her employer was having a birthday party and I was invited. This was my first introduction if you like to being in a room full of people with various impairments and PAs. I had a really nice time. I didn’t think anything more about it and she went back to America. We still kept in touch, etcetera, etcetera, and every Friday I used to look in the newspaper, see what jobs there were in the Evening News, and I knew I didn’t want to be a bus driver for the rest of my life although I enjoyed it, and I saw Suzelle’s advert looking for a PA. So I thought, “I don’t have any qualifications or nursing experience.” So I phoned my friend up and I said “oh I’ve seen this advert but I don’t have any experience or things like that”, and she said “look Mandy, it’s nothing about qualifications, it’s about who you are as a person.” She said “apply for the job, just be yourself and go for it.” So I applied for the job, Suzelle interviewed me, and twenty-three years later I was working for Suzelle, and the ironic thing of that story is that that lady whose name was Heather now lives in Oban where she’s lived for twelve years, and the person she was meeting is her husband and they have two grown-up sons now, and we’re still friends twenty-five years later.

MD That’s an amazing story! Brilliant! So tell me a little bit about your relationship and your work with Suzelle, and maybe a little bit about her and how you managed to, you know, you started into working as a PA for her.

M Yeah. Well, when I first started working for Suzelle it was in 1992 or 93 and it was just at the infancy of the whole idea of independent living, and Suzelle was a Social Worker as well as a convener of LCIL and involved in many other things - she wore many hats. She was very much a sort of activist person all about justice, equality, in whatever field, not just in the disability movement. She was one of the first people in Edinburgh to go to Edinburgh Uni, and carried upstairs to all her lectures and stuff like that and so yeah, she was involved in lots of things, but she lived with her mum when I first started working for her, and her mum was probably in her mid 60’s at that time and they both, her mum had done all the caring for her up to that point. They did have one lady who used to come in a couple of times and they spoke about this whole idea of independent living funding and how would they feel, and I think her mum was ready - or felt that she was ready - to, you know, take a backseat if you like, and working for Suzelle as one of her first full-time PAs, it was challenging because I went in totally blind and most of Suzelle’s people who she employed she specifically employed them with no experience because she wanted to train people specifically to how she wanted things done. So just like you and I will have morning routines, but you’ll do yours entirely differently from me. So, and working in the house with, I had to respect that it was Suzelle’s mums home too, and while she might do things in a certain way and I might think they’re a bit mad or a bit crazy, you just have to accept that that was someone else’s home and whilst she welcomed the help, I think it was a very difficult transition for her to let go of “oh, it should be done this way”, and letting Suzelle if you like, make her own choices, her own decisions, those kind of things, and they were both very strong people, strong characters. Her mum was a single parent and yeah, a very strong woman. I mean, her mum in the 40’s just after the war hitchhiked across Germany with a few other friends, and she was a nurse and yeah, quite a formidable lady, but that also lead to things that happen in everyone’s house. They had arguments. They had major arguments, and you as a PA assisting someone with food or whatever, didn’t really have an opinion on what was going on. You were, we had to be invisible in that moment because, you know, they just had to get on with it and eventually they had a parting of the ways and they came to some agreement over a period of time. Suzelle moved into temporary accommodation just to give them some breathing space, for about six months and then they sat down and spoke and Suzelle’s mum moved into sort of supported living. She had her own flat but with a warden, and Suzelle bought her mums share of the flat where she was and yeah, and so from then it was, I guess Suzelle had the freedom to do what, a bit like when you were a teenager and you leave home kind of thing - although Suzelle was older - she could do things in her own way, but she still had a relationship with her mum. Suzelle was a very skilful communicator, a great communicator actually! I think I, having in this last year had to work for several other people since Suzelle died, I knew Suzelle had lots of qualities of being a great communicator and trust and all of these other things, but it’s really been magnified a hundred fold since Suzelle died just how skilful, and how important, and that was Suzelle’s mantra - communication, communication, communication - and in this kind of work it is key. You have to be able to communicate with your employer. It’s not like working for a big company - if you’ve got a grievance you can go to the shop steward and have a moan or whatever - you have to be able to speak about it with the employer, and Suzelle, after when people came to work for her after three months she would take them out for a coffee and it was like a no bars hold conversation. How’re you really feeling about the job? How was she feeling about you as an employee? Is it working? Are there tweaks that we could make? Are there ways we can work around it?

MD You were with her for twenty-three years, there must have been a little tension there between personal relationship and that kind of professional relationship …

M Oh of course, there was.

MD … and how did you manage that?

M I mean, Suzelle and I had arguments as you would with any relationship when you’re working that closely with someone. When I first started working for Suzelle she didn’t have twenty-four seven cover. Someone would get her up and dressed and assist her to the office at nine o’clock, and she would be in the office until four o’clock on her own, and then someone - for the last seventeen years of her life she was full-time ventilated and she had twenty-four seven cover - so yes, we spent probably, I worked a minimum of sixty-six hours for Suzelle a week, and when she was full-time ventilated we signed the EU opt-out thing so she couldn’t get - we both agreed to it - so we signed it, it was an agreement. I mean, that includes sleepovers and things like that, although you’re not really sleeping because Suzelle required quite a bit of assistance during the night, but yes, we had arguments, we had disagreements, we would fall out, but we got to know each other so well that it didn’t like carry on for the next day or whatever. You were willed enough that we would, yeah, either of us might have a strop for a few hours and then we’d talk about it - sometimes laugh about it - but I still, we still respected the boundaries. Whilst Suzelle lived the life she wanted to live and do what she wanted to do, I still respected the boundaries that, at the end of the day, Suzelle was my employer, and although Suzelle did do everything I would say that she wanted to do, she still was very respectful and mindful of her staff and again that’s something that’s been highlighted since Suzelle’s death that some employers - in my opinion - are not so skilful in those areas, and so they’re much more separate - so you’re very much there as a job. Whereas Suzelle was an all-inclusive person, and she employed four people in the end, who worked with her, because as I say she needed twenty-four seven cover, and all of the people, one girl had worked for eighteen years off and on whilst having four children. Another girl had worked for her for twelve years. So to me that speaks volumes, of who Suzelle was.

MD And what are the other, were there any other gaps for you in terms of the support you get as a PA? Do you find it, some people have come in here and talked about it being an isolating job?

M It can be isolating. I think although you have to respect confidentiality - which is a huge thing - Suzelle certainly was aware that at some point we may have to let off steam or confide in a very close friend about something that’s troubled us at work with Suzelle. Suzelle wasn’t stupid. It wasn’t that you were going broadcasting Suzelle’s private business, but there would be moments - as with her - that she would confide in a close friend how she was feeling about a particular issue. So yes, I think that comes with time and if you have that relationship with your employer. I can imagine if you don’t, like one person I’m working for at the moment, I feel like I walk on eggshells in that job because it’s not, and this person I’ve known for many years and as a person when I’m not working for them as a friend, as an associate - fine, but as an employer, they’re not the right person for me because I don’t want to walk on eggshells all the time when I’m around this person.

MD What’s your thoughts about, what do you think the benefits of the book are itself?

F Having not really had time to read some of the stories but having spoken with Lilian and had a brief look at the other one they produced for the employers, I think it can only be a good thing to encourage people to be, because like me I’m sure many people have this preconceived idea that you have to have had some nursing experience or all of those kind of things, so I think bringing together very different stories from different people can only be a positive thing, and certainly in all the things I’ve learnt through working with Suzelle and from Suzelle as a person, I don’t want to lose those, that knowledge. I want to use it. Whether it’s in a professional capacity or being involved in something like this that can make a difference - can make changes - because very much that’s what Suzelle was about and I definitely want to champion that.

MD How did you get into working as a PA?

L Well, I have worked in a school for complex learning needs since 2009. I moved to Hampden School and Yvette - who is the boys mum - had come into the school, and she was asking because she’d been given a budget for a PA and she was looking for somebody, because she was worried about taking somebody from outside - like going to agencies and stuff like that - she would rather there was somebody that knew the boys, and it just so happened at that time I was looking for something else as well. So I do still currently work in the school. I just, we kind of work the hours round about because the boys are in school anyway, so I can still do that job and then go to them at night time and help out after school and at the weekend.

MD And was it a natural progression from the work you were doing at the school to like taking on this role, or was it quite daunting or different?

L It was quite scary because Yvette has never been an employer. She was just - as far as I - she was just a parent. Do you know what I mean? So it was quite daunting for both of us. She was opening up her home to somebody who - she had seen me about in the school and we had got on quite well - but she didn’t actually know me, and I think it was quite daunting for both of us to cross that line, to go into a totally different relationship to being just another parent in the school, and also, I was quite worried about the boys - she’s got two boys who have both got autism - and my younger cousin that actually works with the younger brother, and I work with the older brother - that’s just kind of the way that we’ve worked it out - but I was worried about the boys seeing me in a different role from being in school to being at home, because of their autism. They kind of, they have chucked people in tightly packed boxes. You’re supposed to be there, mum’s supposed to be at home, and crossing that line was quite daunting as well because I didn’t want to go into it and it affecting the boys negatively rather than being a positive experience to have somebody else in the house. So that kind of worried me as well.

MD What do you enjoy about the role as PA?

L Everything, I think. Just being able to, I mean, obviously being able to give Yvette that time that she needs with her other boy who’s thirteen, fourteen. So when the boys come in from school, right I’m there, let’s go! We’ll go and do something and just give her time, but in terms of a personal, personally, it’s good to see the boys in their kind of, their own environment. It does help I feel, working, with working in the school. It’s definitely helped, rather than being a negative thing like I was worried to begin with, but I love everything about it. I love being able to, building up that, being able to build up that relationship with Anthony, I mean he’s only eleven, so … hopefully I’ll be with him a long time. Do you know what I mean? And I think seeing him growing up and when he learns new things and he’s learning to become more independent and stuff like that, it really, it’s quite heart-warming and you do, you get quite, it becomes not a job as such. Obviously I’ve got a clocking-in time, I’ve got a clocking-out time, I’ve got a boss, but it’s totally different to anything that I’ve ever done before.

MD What are the kind of activities that you do with him?

L Anthony is quite … quite restricted in his activities because of his Autism. He can become really anxious about stuff and can become quite challenging, very challenging behaviour and - not as challenging as some I’ve worked with - but can be quite challenging. So we try and keep things very simple. We try and keep, he loves swimming, so we go swimming, and that was also another thing that got him to become more independent because it’s only me and him. He loves this, there’s a big soft play centre up at East Kilbride - “Rainforest Adventure”. He loves that place, loves all the slides and stuff like that. We try and do quite physical activities because he’s a bit overweight, so we’re trying to be a bit more physical. He loves on the bike. He loves going on a train, so we tend to take a train journey maybe five times a week! Every night he’s like “right, let’s go on the train”, and we just take the train from Mount Florida into Central Station, go and get a wee snack, back on the train and back home and that’s him, he’s quite happy, he’s had his wee train journey.

MD And is there like support for yourself? Do you find, or is there gaps in support that you would need or …?

L I think, I mean, this is the first time I’ve ever been in here. I’ve never been in here before in the GCIL centre, but I didn’t really know how much, if there was any support, and I still like I’m still kind of, when I was employed by Yvette it was like “right, you’ve got enough relevant experience”, and because I work in the school, we have training sessions. We have Autism training, we have health and safety, we have challenging behaviour. I’ve got all these certificates that were needed to start the job. I didn’t need to come in here and do any training, but I think with my young cousin working, she’s only twenty and she doesn’t have the experience and she doesn’t have the qualifications, so I’m kind of the lead carer, but I think I was going to actually come to the next - if I can get the time off work - to maybe come to the next gathering kind of thing. I saw there was one in December, to maybe just, yeah, just to see what kind of things there is there and also with Anthony being a child, it’s very different to a lot of the stories that are in the book. It’s different from a lot of people’s stories because a lot of it is self-directed support by adults. I’m working for Anthony’s mum. She’s the one that’s asked for the support, do you know what I mean? It’s quite a different, it’s a different situation, completely. I think parents a lot of the time think that they need to just get on with it, or there’s, they can go to a respite centre, but I don’t think they realise you can have support in your own home. You can go and do your dishes or do whatever it is. I mean, Yvette takes that time to go and make dinner or even just because Yvette has her own mobility issues, the boys are runners, which means that she’s got to have the door like triple locked and stuff like that because there have been times where they’ve flew out the door and she wanted somebody that was kind of able to run after the boys the way she can’t, because if one goes, she’s stuck.

MD Yeah.

L Can’t leave the other one to go, do you know what I mean? Yvette, she’s in such a difficult position that I think me being a PA and being around the home, I think it’s made a difference to - hopefully made a difference - to her life, and being able to sit on her couch and not worry about somebody’s going to fire out the door, or somebody’s going to get the keys, or somebody’s going to try something or, because I’m always there, that I can just jump and go and see what they’re up to.

MD So like, if you were, if somebody was listening to this podcast and you were to try and encourage people, you know, to become a PA, what are the things you would say that are really great about it?

L I think just being able to make a difference to somebody’s life in a big, big way, and also I think you get a sense of self-fulfilment as well, being able to say that you’ve made a difference, and I think working with people - not necessarily children - with disabilities or complex needs or whatever kind of thing that they need support with, I don’t think there’s many jobs out there that give you that sense or kind of satisfaction in a job well done.

MD So Susan, so how did you get into working as a PA then?

S Well, kind of by accident. I was being paid off. I worked in a place at a school and I was just on a temporary contract and it was for people with Autism and lots of different disabilities, and I got paid off, and then I was at home wondering what to do with myself. I took up a job working in a bed and breakfast, and then I got talking to my friend - one of my oldest friends that I’ve known all my life in primary school - and she was quite depressed. You know how you share your problems, “oh I’m really fed up”, and things weren’t going her way, and the reason why was because her dad’s coming on in years and he was doing everything. He had a son - Eileen’s brother - living with him because he had Autism, but the dad was eighty-three and he wasn’t able to manage him anymore. The wife was passed away five years ago and this lady wasn’t, didn’t want to take up that role and she felt it was being forced on her, and it was making her have depression and I said “Eileen, you’re going to have to get help, we need to get you help”, and I couldn’t stop thinking about her and I said ‘I’ve just been in a job where I can look after people with Autism, I think I have a good understanding of it, if I can help in any way then I will", and so we went to CAB and got help from there. Unfortunately, it took eight months, so I had to have my little bed and breakfast job for a long, long time, which was really awful because I was doing breakfasts and I had to get up at half four in the morning, but yeah, it took a long time to set up but it was worth it. I’ve never looked back and I don’t want it to end, but obviously it’s a situation that changes all the time. I’ve looked up to this family all my life. I’ve looked up to Jackie - the dad - he’s always been, you know, he was a policeman, he was a pillar of the community and he’s very interesting. He’s got lovely stories, he’s got a good mind, he can remember the past - which I’m really interested in. He was so good around the house, he built lots of things and made the garden lovely, he was just an all-round, you know, it’s a pleasure, and I really enjoy working with Lesley because, well he was fifty-five and there wasn’t very good understanding of Autism at that point, and he never went any further than primary school - he tried secondary but got bullied so he never went, but luckily the head teacher at the primary school said he can stay at the school until he’s sixteen - at the primary school - and then from there he’s just sat at home and done nothing. Never seeked any other services right up till I started - at all - so he was very in on himself and wasn’t sure if people, hadn’t been even to a shop! He was kind of hidden away and anxieties.

MD So when you got involved in his life then things started to change?

S It started to change.

MD What about kind of activities that you’re doing?

S Well it was very, very small steps because obviously it was a shock even for me being there. So I had to integrate myself. He knew that I was, in all the time I was working at the bed and breakfast I was going once a week at the same time on a Tuesday at six o’clock, it was Susan time, and I did that for the eight months and then got a package set up and went from there, but it, yeah, we do, Lesley has diabetes as well, so we go walking twice a day and we make meals together and try and get him a little bit more independent. Dad had done an awful lot for Lesley so it was trying to give more control to Lesley, but it’s difficult because dad has Asperger’s and so his day is very, it’s all very set out.

MD It’s regimented, yeah.

S Very much so. So, we’ve managed to get a polycrub going, we’re more adventurous on our walks, we’ve been for longer drives in the car, we’ve been, we’ve taken Jackie to the place where he was born in another little island off of - they come from Shetland.

MD Oh fantastic! Okay, so that’s where you’re based.

S The really good thing about Shetland for PA work is that we all, everybody knows everybody. I don’t know if you saw in the book one of the things that Lilian wanted in the book was a picture of the school photo because …

MD Oh brilliant!

S Okay, so that is Lesley, that’s his sister and that’s me!

MD Oh!

S And this is the whole school, and the lady that looks after him when I’m not there is, was the school teacher as well, so it’s perfect.

MD That is amazing! It’s a really nice story.

S I know!

MD Yeah, fantastic!

S And so the trust is there and Lesley, we all speak the same language. It’s just, yeah, you sort of feel like a family, a community all helping together, and I mean the fact that we got this polycrub built, people in the community are giving stuff to Lesley to grow in his polycrub and everything, and it’s just heart-warming and he’s never had this is his life! He’s never had that kind of attention in his life!

MD And is there like, you know, being based in Shetland too and being a PA, are there any sort of challenges around it?

S Yeah there is, because you’re not open to services so much, and I would like to learn more. There’s things that I think the things that come up and I think “oh, I’m not really sure what I’m doing here”, and Eileen has her own life and her own job and I don’t - she doesn’t have the answers too - and she’s actually - it’s like a fish out of water - so I can’t really turn to her and say “what do you think” because she’ll think “I don’t know.” So it’s like, you know, I’m going to have to do some kind of, I would like to do some bereavement course, palliative care - I think that’s going to come up - because I’m going to have to be dealing with Eileen, Lesley and myself because I’ve known this man for so long, and I don’t know how to access that. I have nobody. I get a pay check from Eileen and that’s it. I don’t have anybody else to answer to, so it’s just not having the information. When I was at the school they would send you on courses, but I don’t have that there.

MD Yeah, that structure.

S And it’s a very lonely job. It would be, you know, it’s just me and the two guys and then I go home - which is only eight miles away - but …

MD So there isn’t a network then in Shetland for PAs or anyone doing similar types of work?

S Nope, not yet, but I’m hoping after today there will be something.

MD Great, and what do you - just on the back of that - what do you hope these stories, this book, will achieve as well?

S Oh I just, I think this is absolutely wonderful! Just seeing it in black and white. I think it’s going to take, make things take off. Especially in Shetland, because we do have the homecare. A lot of people’s not, it doesn’t suit everybody - the home care - because I used to do that before, and you were given a list of people you had to go and see and you had to drive to him in Lerwick and her in Ollaberry, and there’s miles in-between and you didn’t get driving time, and the person at the bottom of the list didn’t have much time with you and, you know? It was crazy and you had to, some people wanted to talk to you while you were doing your stuff because they were just lonely, so this is, I know what they want, I know what the family are asking of me, I know what they don’t want, and you just tailor it to suit them and that is complete and utter job satisfaction.

MD So if you were somebody who was listening and you were going to sell being a PA to them, what would be the centre of the things you’d say?

S I would say go for it! It might take a while to set up but be patient and go to somebody that’s already involved, or if I can help you in any way I’ll help you, I’ll point you in the right direction, because at the end of the day it is total job satisfaction and the trust that you build up with a family, it’s incredible, it really is!

MD The Scottish Social Services Council offered support through Open Badges. We heard from Yvonne and Alison, who told us about the work of SSSC, and what Open Badges are and how they can be acquired.

Y So the SSSC is the Scottish Social Services Council, and we’re the regulator for the Social Services workforce in Scotland. Our work means the people of Scotland can count on Social Services being provided by a trusted, skilled and confident workforce, and we protect the public by registering Social Service workers, setting standards for their practice, conduct, training and education, and by supporting their professional development.

MD So you’re here to support the PAssport to Independent Living launch today. What kind of support are you offering?

A Part of the support that we’re offering is around Open Badges. People told us that they wanted recognition for the time and effort that they dedicated to their continuous learning development, particularly when they make use of a digital learning resources, so we’re using Open Badges to provide that. Open Badges are internationally recognised as the best way to collect, manage and share evidence of your learning in today’s digital world. There’s over three-thousand organisations across the world that are actually using Open Badges, and SSSC is one of the biggest issuers here in Scotland. Our badges are considered open because they’re, when you show one of your badges to someone they are able to see the criteria against which their badge was issued, and not only that, they will also see the evidence you provided to prove you met that criteria, and that’s normally around a reflective account.

MD So you’re providing to Open Badge support then for Personal Assistants as part of this work?

A Yeah, we’re encouraging people who are not only registered with us but people who aren’t registered with the SSSC to go on and have a look at badges.sssc.uk.com site, and we’re hoping that there’s various interests that will capture people’s attention. We’ve got over one-hundred and seventy badges available to the workforce at the moment, and we’re asking for people to go on and click on the information and to see what area they would be most interested in to earn an Open Badge. When people actually click on an Open Badge they will actually see there’s a criteria that they will be expected to meet, and there’s prerequisites which will tell them if they need to earn another Open Badge before they achieve that badge. So what we’re actually asking people is that, asking them to recognise, is that they don’t apply for a badge to do the learning, they will actually do all the learning and access in all our learning resources to be able to apply for a badge, and it’s not about sitting at a computer, this is all about looking at the badge criteria, looking at other resources - learning resources - which are available, and then actually asking them to see what activities and tasks they’re actually looking at to achieve an Open Badge. They’re designed to challenge people and to make people think about this theory that applies to them in their workplace and within their practice, and we’re asking people to take the time to actually look over the criteria.

Y So the SSSC as well as the Open Badges also have the SSSC Learning Zone, which you can access at learn.sssc.uk.com and help you to develop your practise. All of these resources are free and accessible to anyone working in Social Care, you don’t have to be registered with the SSSC. Whatever your role and level of experience, the Learning Zone has various apps and resources to help you develop your knowledge and skills. You can work through the resources at your own pace and use them to contribute towards your record of learning and development. You can find resources on things such as leadership, dementia, self-directed support, SVQs, childhood practice, safe administration of medication, protecting people and even modern apprenticeships.

A We’re also encouraging anybody from the Social Services sector to actually join our Yammer Network, and if people are interested they can actually go on our website and they can actually click to join the network, and this is where we’re asking a group of people to actually come together with similar interests so that they can share their learning, share their knowledge, or share what’s happening within practice from across Scotland.

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