Protocolos de enrutamiento dinámico

Some NRTs viewed working with people caring for people with LTNCs as part of their integrated approach to service provision and‘included’carers in a variety of ways. Findings presented here are informed by staff and service user interviews, but are drawn primarily from carer interviews.

There was no expectation from the NRT in site B that carers would be directly involved in their interventions. Rather, the team took their cue from the attitudes of service users and carers, some of whom, our interview data showed, preferred that the carer was not too directly involved in team interventions. As such, this team was not necessarily proactive in engaging with carers, either as part of the rehabilitation team or as people requiring support in their own right.

None of the carers we interviewed had received a formal assessment of their needs by the NRT, although this would have been welcomed by those who were experiencing an increase in the intensity of their caring role. Some did not see themselves as needing support or see this as part of the NRT’s role.

However, one carer said that he would be able to ask the team if he felt in need of support. Another carer felt that the NRT constantly assessed how she was coping with supporting her husband. She felt that her needs as a carer were being addressed because the team provided relevant and timely information and suggested how she might adapt her support. Having made the NRT aware that she wanted to be part of her husband’s rehabilitation, she felt that they had adapted their practice and co-opted her as‘a willing helper’(Ca2B). The relationship had evolved to be a close one that had benefits for both the service user and the carer.

I don’t think they realise, actually, how much support they give without saying an awful lot. It’s just intangible that. It – I just feel it all the time that, you know, they are aware of my problems.

Ca2B, wife of person with stroke Carers in site C were more likely to be involved closely with the NRT as active participants in helping to support the team’s interventions with service users. Some saw themselves as an integral part of the team with their own valuable experience to offer or, as expressed by one carer,‘their apprentice’(Ca4C, husband, condition withheld to protect anonymity). Carers welcomed the opportunity for close involvement and the opportunity it provided to ask questions, gain information, and help them to be better able to give support. For example, the team would demonstrate ways of moving and handling, sharing skills and explaining reasons for decisions and courses of action. Moreover, carers’relationships and ongoing contact with the NRT gave them a sense of being seen as a person, rather than defined by their caring or marital role. Even though they might not feel the need to discuss their own needs, several carers felt that support was available to them as well, by the team showing awareness of when they needed a break, relieving them from responsibilities of accompanying service users to hospital

appointments, or sometimes‘just [by] the fact of being there’(Ca1C, wife of person with PD). One carer had initially encountered difficulties in her relationship with the NRT, but she described how the team manager had actively sought to resolve these. Furthermore, she had been offered a formal review of her needs and counselling, the latter of which she declined.

Only two carer interviews were completed in site D. Both carers felt that team resources were stretched and that the focus was entirely on the service user. In the event that carers’views and opinions were sought, it was only in relation to the service user and there were not the resources to offer a

wider range of support. Consequently, carers either felt neglected by the service and unsure of how the team viewed them, or felt they were seen as someone to whom greater responsibility could be transferred.

I think they start seeing you, not necessarily as a professional, but as someone who can do the task without it having to be someone from the healthcare area, and I think, again, that is possibly partly due to funding, you know.

Ca2D, wife (condition withheld to protect anonymity) Not only did this bring about a shift in what she viewed as her primary role as a wife, but as a carer she did not feel best placed to monitor changes or make‘professional’judgements. Although both carers interviewed in site D felt an active responsibility for the care of their partners, a greater acknowledgement of their situation and pressures by the NRT would have provided welcome emotional support.

There were wide differences in the experiences of carers, not only across case study sites but also, at times, within areas, underlining the often complex relationship that evolves between service users, carers and formal services. Interviews showed how, if carers became involved with a NRT either by volunteering their services (site B) or by being included as a member of the team (site C), the ensuing relationship facilitated a process whereby carers’needs were also addressed. Carers tended to feel more confident in their role,

EXPLORING THE MECHANISMS FOR INTEGRATION IN THE CASE SITES

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better informed and more confident about the parameters of potential problems and discussions, and more reassured about their ability to cope.