Foundations for self-directed support in Scotland
Foundations for self-directed support in Scotland

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Foundations for self-directed support in Scotland

5.9 Different roles: personal assistants

Figure 5.9

One of the major changes brought about by the introduction of individual budgets has been the growth of a new workforce of personal assistant s (PAs) to support children and adults with a range of needs. The role is no longer a very new one. It does, however, mark an important shift away from formal carers being almost entirely agency-based.

Citizens can use an individual budget to employ a PA (or several PAs) to meet their agreed support outcomes. PAs can be involved in a very wide range of support activities, including personal care, such as showering and helping people to eat, and enabling people to take part in social, leisure and sporting activities The Social Care (Self-directed support) (Scotland) Act 2013 describes over 16 year olds as 'the supported person' because they are responsible for managing their budget or individual service fund (unless they lack legal capacity to make these decisions - see Section 4 [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] ).

The PA may be drawn from existing paid staff or directly from the wider labour market. Sometimes PAs can be family members or someone in the individual's existing social network, although there are restrictions on these circumstances (e.g. when undue pressure has been exerted on the citizen or potential paid carer).

There are some important differences between the role and accountability of a privately employed PA and someone employed by an agency, such as local authority or voluntary agency. These are explored in the next activity.

Activity 5.6 The role of the personal assistant

(40 minutes)

The video below is about Simon Stevens and Flora, his PA. Flora describes her role and contrasts it with her experience as a carer working in an agency. Towards the end of the video she reflects on issues such as job security for PAs.

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Transcript

Simon [subtitled]
I’ve got about five conferences in Coventry this month.
Woman
Have you?
Simon
Unfortunately, yes.
Woman
Have you? You're going to be really busy.
Simon
Yes.
Narrator
Simon Stevens was born with cerebral palsy. But he doesn’t let that get in the way of doing the things he wants to do. He’s a disability awareness trainer and campaigner for disabled people’s rights. Today he’s at Coventry University talking about a forthcoming workshop.
Simon
They’re using my picture in the White Paper.
Flora Lloyd
They’re using your picture in the White Paper.
Woman
Fantastic.
Simon
It’s really exciting. It's a really interesting time.
Narrator
Wherever he goes, Simon’s accompanied by one of his PAs. Today it’s his main PA, Flora Lloyd. The role is to facilitate Simon’s life – everything from translating at conferences to support and planning the daily menu.
Flora
You want me to just pop these back in?
Simon
Yeah.
Flora
And so we’ll just leave the sausage rolls out to defrost?
Simon
Yeah.
Flora
Put the fish with this, and that for lunch, yeah?
I first met Simon about twelve, thirteen years ago when I used to work for an agency so he was one of the people that I used to visit on the agency. And we got on extremely well, we gelled.
Smell this? Smells like tea, doesn’t it?
And then about three and a half years ago he offered me a part time job, which I took, and then that led to me taking a full time position with Simon.
You’re absolutely right!
It’s worked out fabulous. Because I was, I’ve always worked in care and the restraints around care work were getting really tight, the policies and procedures were really tight and, you know, you were answerable for everything, you couldn’t do what you wanted to do because it wasn’t within the care plan, and it wasn’t what was allowed. And so working for Simon you’re free to do what he wants to do so you are enabling somebody to live their life as they wish.
Simon [subtitled]
My staff do absolutely anything I need them to do, from nappy changing to translating at meetings, to making the meals, to driving me somewhere, even driving me up the wall sometimes. And basically it is what I need doing to meet my outcomes: it is for me, my work and my mental wellbeing. And, as someone put it last week only, it's all about meeting my health and being happy: that’s my main outcome.
Flora
Do you want to speak?
Simon
Yes.
Narrator
Simon runs his life from his ‘den’, packed with computers and other devices. Phone conversations can be a problem, so usually it’s Flora who passes on the message.
Flora
Hello Fahim.
Simon [subtitled]
My PAs are employed to be friendly with me, but they are not my friends. We can have a wonderful relationship, but at the end of the day I’m their boss. And if they don’t do what I want, I will – well it won’t work and I’ll eventually ask them to leave.
Flora
There’s times we’re in London or Manchester or Birmingham, where Simon goes to conferences and meetings, and so obviously I assist him to go there. There’s other days that we spend all day washing and ironing, and doing the normal things. I assist Simon with his banking, his shopping, assist him to do whatever he wants really.
Narrator
But a year ago things got more complicated, when Simon began to find walking difficult. He had a couple of falls, and ended up in the hospital neurological ward with a diagnosed nerve virus.
Simon [subtitled]
Then I had medication for five days, IV, to get the virus out. And at that time, I thought that was it. I had my antibiotics; get home, have a nice shower, a good night's sleep, and I would be walking in a week. And it wasn’t quite like that. And they said it would be months, then they said it would be weeks. And then a week later, they discharged me, or they said I could go home. I had no idea really how impaired I was so I wasn't thinking about night-care because I'd never had a night-care issue.
Narrator
He was discharged, not realising how serious this had been, and that recovery might be months away. One night, after falling out of bed, he realised he had to get night care. It took weeks of effort to get any night care at all, and more wrangling to get it supplied by a competent and responsive agency. He felt his home becoming a hospital, his routine dictated by outsiders, zero privacy. And little acknowledgement that, until recently, he had been able to walk.
Simon [subtitled]
That’s why I put pictures on the wall, not only for my mental wellbeing so I realised who I was: it was so the carers could understand I was a person and there was a lot more to me, and I was just not someone in bed. And as it got longer and longer it became … it wound me down, it made me go crazy, because I had no privacy.
Narrator
After difficulties with three agencies, he eventually got help from a person-centred community rehab team.
Simon [subtitled]
Number one, they asked me what my goals were, and it was about walking, about what I wanted. Also it was about, in order to walk again, I needed to learn to walk as someone with CP, not as someone who was normal. So they had to let me show them this is normal, this is not normal. If they tried to make me walk the way I ‘must’ walk, maybe it would have damaged me, and I would not have ever walked again. So they were quite good at letting me control. They didn't really do any ‘therapy’: all they did was empower me to recover myself. I did a lot of the recovery myself. Once I knew what I was doing, I used to do a bit each day on my own, and it was very good. Finally, they were on e-mail, and I think e-mail makes … allows you to deal with it as a colleague. And I was able to talk to them about what I needed in a very person-centred way. And I found that great, and they were a wonderful team.
Flora
Is it just the doctors we’ve got tomorrow?
Narrator
Simon’s determination to resist the imposition of residential care and demand a community-based solution eventually paid off. What the authorities may have found difficult to deal with was the huge change in Simon’s needs as a service user.
Simon [subtitled]
I got a new label because I got a severe impairment, and no one knew what to do. Because I knew I wanted a community-based solution. I didn't care whether it existed or not, that's what I wanted. No one listened to what I was saying. No one was asking me what I was saying. And if they had listened to me, not agreed with me, but worked with me, say, ‘okay Simon, this is what we can do, this is what we can't do’, I think that is quite important.
Flora
Do you realise this is the first cup of coffee you’ve ever made me?
Simon
Yes. It probably is the first cup I’ve ever made anyone!
Flora
Anyone? First cup of coffee from Simon. Beautiful.
Simon
Now, be honest!
Flora
What I find as the challenges as a PA is you’re not recognised within the care profession if you’re a PA, there’s no mandatory training. You have a lot more responsibility, you don’t have anybody else saying what you can and can’t do. What your boss asks you to do is, is what you have to do, so there’s so much more responsibility with so much less protection. Working purely for Simon, if anything happens to Simon my job’s gone, so there’s no security either. So it’s an extremely intense relationship that we have, you know and I’m sure it’s challenging for him, I’m sure it’s not just for me, I’m sure at times that, you know, it’s challenging for him, and I think it’s all about attitude, all about allowing Simon to be himself, express himself and be what he wants to be.
Simon [subtitled]
Flora respects me and she respects her job. And she respects it’s my choice whatever I want. She's got a very open mind, and so we get on very well.
End transcript
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Based on Flora’s comments in the video, note in your learning log :

  • those aspects of Flora’s role that are important for personalisation
  • those aspects that might make the role of personal assistant challenging.

Discussion

Flora notes many positive aspects of caring for Simon Stevens as a directly employed PA:

  • huge flexibility
  • limited and simple accountability to Simon
  • the emphasis on relationship rather than on procedure.

Nevertheless, it is a working relationship, not a friendship. As Simon says, ‘I’m the boss.’ Towards the end of the video, Flora explains that being a PA can be challenging as well as rewarding:

What I find as the challenges as a PA is you’re not recognised within the care profession if you’re a PA, there’s no mandatory training. You have a lot more responsibility; you don’t have anybody else saying what you can and can’t do. What your boss asks you to do is, is what you have to do, so there’s so much more responsibility with so much less protection. Working purely for Simon, if anything happens to Simon my job’s gone, so there’s no security either. So it’s an extremely intense relationship that we have, you know and I’m sure it’s challenging for him, I’m sure it’s not just for me, I’m sure at times that, you know, it’s challenging for him, and I think it’s all about attitude, all about allowing Simon to be himself, express himself and be what he wants to be.

In workforce terms, then, there are downsides to being a PA. Flora has received no direct training to be a PA. It is possible that Flora’s role as an agency carer provided a range of experience and ‘on the job’ training that equipped her well for her role with Simon. This may have provided her with the confidence she needed to cope with the increased responsibility that being Simon’s PA required. Lastly, although Simon and Flora’s working relationship seemed very good, Flora’s livelihood depended on Simon. If Simon’s health deteriorated, then Flora’s employment position might become more precarious. Indeed, if there was any loss of trust, then as Simon said:

My PAs are employed to be friendly with me, but they are not my friends. We can have a wonderful relationship, but at the end of the day I’m their boss. And if they don’t do what I want, I will – well it won’t work and I’ll eventually ask them to leave.

In 2010 the Scottish Government published a study of the workforce and employment issues surrounding self -directed support (Reid Howie Associates, 2010). The research suggested that PAs needed a wide range of skills and attributes (see Figure 5.10). One PA summed up the necessary personal capabilities by saying:

You need patience in abundance, tolerance, flexibility. You need to be completely confidential and know when to bite your tongue.

Figure 5.10: An example of a PA job description, based on views of service users consulted during Reid Howie's research (Reid Howie Associates, 2010)

The report found that both PAs and their employers were positive about the benefits of self-directed support, and that most support arrangements were working well. However, there were concerns expressed by participants about issues relating to employment rights, pay and conditions, retention, and insurance, for example, that needed to be addressed. Similar issues have also been raised by UNISON, one of the UK's largest unions, in its response to the consultation on the self-directed support legislation:

User-appointed personal assistants hired directly by individuals raise questions over opportunities to scrutinise their working conditions and regulate practice standards; of awareness of employment rights; of their accountability; of opportunities to benefit from best practice developments; and for collective bargaining.

(UNISON, 2012, p. 10)
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