Support staff: Help with getting on with my life

Eight of the ten women in this study were living or had lived at some time, in support services provided by the public or private sector specifically for people with learning disabilities. Living in this type of residential service can bring a different dimension to a person’s social network, as there is an important role that paid staff have in terms of maintaining their social networks and community participation, and this has been acknowledged when providing services (Hunter and Perry, 2006). Five of the ten women in this study lived in supported housing arrangements; usually this was rented housing with paid staff (link workers) providing varying hours of support each week. Link workers frequently supported the women in this study with their household bills, shopping and leisure. The other five women participants, resided in residential care and received twenty-four-hour support from paid staff. This usually included a varying level of personal care and support, with daily living activities in the home, community and healthcare access. The difference that paid staff support brought to their local connectivity is significant, as having an enthusiastic support staff team tends to influence the shape and access to community activities for these older women. It has been acknowledged in the literature that personal relationships require the attention of

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staff if people with learning disabilities are to have a better quality of life (McVilly and Rawlinson, 1998; Reinders, 2002).

Eight of the ten women all talked about the value of ‘good’ staff and how staff had helped them with a number of practical yet essential tasks. As the women had aged and family visits had reduced, the reliance on members of paid staff had become more apparent; however, there was still an expressed preference to speak to family first when the women faced problems. Their narratives described the help that they had from support workers to complete housework, pay bills and participate in activities outside of the home.

‘They help me with bills, cooking, all sorts of things. I get about four hours a week’. [Susan: 253-54]

‘They book my holidays with me. I like Grace: she is someone that I can trust’. [Jenny: 454-56]

The diversity of support described by the women was noticeable, and this had an impact on what the women were able to do during the day. Those who lived in residential settings with twenty-four-hour support were often reliant on adequate staffing being available before they were permitted to go out. The support staff were often seen to be in the position of decision-makers, and the women were expected to understand that when there were staff shortages, there was less access to activities and support. Equally, they were aware of – and frustrated by – the constant turnover in the staff team.

‘No, the staff don’t, cause two of them are off on Saturday so we can’t go out. They are all busy doing things. The manager said “you can go in September, you can do the jewellery, you can do it from 1:30pm.” This is alright for me’. [Linda: 203-05]

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‘Oh they don’t always come, not every day. If they don’t come I stay in, I stay in and watch telly, but they don’t come all the time, but when they do I go out and then I get back’. [Marie: 488-491].

Although there was a general acceptance that staff were not always available, Belinda and Carolyn shared their frustration about the unreliability of support staff and their frustrations when they did not arrive as planned or when changes to their day occurred that were outside of their control.

‘My carer was supposed to come yesterday but they rang me up Tuesday because the person we have who’s been covering and they’re on leave and I was just going out on Tuesday and the person that organised it phoned me up and they said “I don't think we've got anybody”, so I hope I get somebody next week’. [Belinda: 289-294]

‘Why don’t they ring me and tell me what’s going on? But they never do. I mean, xx leaving, right? But they never really tell me what’s going on and I’ve had falls when I’ve been living here and that really gets my back up, and if I go and say I get told off if I go and have a go at somebody. So it really annoys me, especially if they don’t call’. [Carolyn: 206-211].

Having regular and reliable support was very important to all of the women, and this had an impact on their daily lives. They all talked about how their link workers had helped them to become more independent in their lives, and helped them to make choices.

‘My link worker goes on the net for me. I sit down next to her and she writes it all down. We find holidays on there: we found more than last year. We took all the details and wrote the numbers down or sent a message through the computer to ask for them to send stuff, which they did. What was good we kept a file of all the holidays so I could choose’. [Susan: 42-43]

Some of the women saw their support or link worker as someone who could help them when they were worried, or needed to speak to someone.

‘No there isn’t, there isn’t: both my brothers are at work, and there is only my mother if she is home. So I get hold of the office and I phone the office. I have a list of link workers’. [Susan: 275-281]

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After many years of receiving varying degrees of support from paid staff, the women were keen to share their experiences of good and bad support. The women described the qualities they would want to see in their support staff, and what aspects were essential to being a good support worker.

‘The right person, understanding people, understanding people’s problems and something like that: someone who can understand our medical problems and our learning difficulties and something like that, yes - kind’. [Eve: 143-45]

‘She is someone I can trust, yes I trust her’. [Jenny: 454-55]

Figure 9: This is Michaela - she works here. [May 2, 17]

Three of the ten women had experienced some very difficult times during their lives, and recalled the times when they had been living in care settings where some of the staff had been ‘nasty’. Providers of care in all types of settings have, on occasion, employed a workforce that is poor quality or abusive, and public enquiries and reports by the regulators confirm that abuse of those that are vulnerable have continued to

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occur in both institutional and community services (Plomin, 2013; Flynn and Hollins, 2013).

‘No, I didn't like it there. I didn't like the people, I didn't like the staff, I didn't like the others there. They were nasty to me and only my friend that used to come and see me, I enjoyed that’. [Marie: 290-293]

Eve recalled a time when she did not have the independence that she enjoys now, and how life in a residential setting was far more planned around routine rather than what each individual wanted or could do.

‘I am more independent now, yes I like that but back then we couldn’t go out on our own: we had to go out with a member of staff, if we needed shoes or clothes we had to go with a member of the staff’. [Eve: 47-49]

There is variability across the literature in terms of the definition of social networks: some have included paid staff whilst others have excluded them (Dagnan and Ruddick, 1997; Robertson et al., 2001; Forrester-Jones et al., 2006). However, for the women in this study, the support workers were included, as it was clear from the narratives that the women viewed these relationships as a positive resource that helped them to carry out everyday activities and tasks, visit friends, and enjoy their leisure time.

Summary of Support Staff

The women in this study had variable levels of staff support, ranging from six hours once a week, to twenty-four-hour-support, seven days a week. Most of the women valued the contact that they had with staff, and associated ‘good’ staff support with positive aspects of their lives: cooking nice food, visiting places, organising holidays, and getting on with their lives. Good staff support also appeared to increase the women’s opportunities to take part in various interests and activities within the local community. Having ‘good’ support staff has been shown to be important, especially before or during a crisis. Support staff provide comfort, companionship, and emotional

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support, and people with learning disabilities reported close relationships with paid staff (Forrester-Jones et al., 2006).

During the interviews, the narratives of the women highlighted the importance of asking others for help, and most of the women contacted their support staff if they could not get hold of any of their family. For those without relatives, the support worker was often their first port of call.

There was a general expression of frustration and anger about the unreliability of some support staff. Staff not turning up at the required time, or the agency sending a replacement or reducing their support time, caused great dissatisfaction amongst the women. These situations placed the women in a vulnerable position, although most of them did not want to complain about their support staff, and very seldom did.

Eight of the ten women were able to articulate the qualities that good support staff possess, and their expectations were possibly very similar to those of any member of the general population. Given their life experiences of being in receipt of care, the women described negative traits that they did not like to see in any of their care staff. Three of the women had been involved in selecting their own support staff and this was viewed as valuable.

Emerging from the narratives was a general message that the women wanted paid staff to support their continued independence and to facilitate their opportunities for taking part in a wide variety of activities. Support staff were not viewed by the women participants as being there to carry out traditional caring tasks or to encourage dependency.

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