The previous section has described the challenges faced by SATs and the (potential) threats to quality of care and service users’ experiences. Despite this, all senior practitioners readily identified features of their service that (they believed) were working well.
Core service features
Those with very holistic multidisciplinary teams consistently identified this as a very positive aspect of their service, including the contribution of all disciplines to the diagnostic and needs assessment process. Depth of autism expertise was another feature that services highlighted as key to accurate diagnoses and needs assessments. Many services spoke very positively about specific group-delivered psychoeducational and skills development interventions.
Specific features
Further specific examples of service provision regarded as working well, as identified by senior practitioners, included:
l involving ex-service users in developing information resources, acting as peer mentors in
psychoeducational interventions, volunteering at drop-in services and running autism awareness/ training programmes
l commissioning a third-sector provider of specialist employment support to deliver work/ employment interventions
l offering a drop-in service for those waiting to receive one-to-one sessions
l implementing stepped discharge arrangements; here, examples included after formal discharge, service users being able to telephone into the service for a 6-month period and providing access to a‘drop-in’ type service
l in localities with strong user- or carer-led groups, collaborative working with these groups to support access to some form of ongoing support and autism-specific network.
Motivated and committed staff team
Finally, a number of senior practitioners noted that, despite the challenges, staff were highly motivated and committed to the service. One service lead gave evidence of this in the way staff were prepared to assume additional roles to enable the service to function.
Sustainability
From the outset of our interactions with SAT practitioners, there was a recurring theme of evolving delivery models and practice driven by both the wider (limited) resource context and the cumulative clinical experience. Many services reported a degree of naivety when setting up their service in terms of how they would work and the level of demand for their service:
When we first started we were really naive. We thought we’ll be an all singing all dancing do everything for everybody service, and we’ve learnt very quickly that you can’t.
SAT2
When asked about future redevelopments in the functions and balance of work carried out by SATs that were required to ensure sustainable improvements in support for autistic adults without LDs, four features of service design, delivery and practice by SATs were identified:
1. greater emphasis on the‘consultation and supervision’ function
2. continued and greater resource and attention to supporting self-management and minimising dependency
3. working, where possible, with local peer-led networks
Services differed in terms of the extent to which they addressed, or had changed their ways of working to reflect, these features. However, and importantly, for each of these features, at least three services had extensive experience with each of these aspects of service delivery, design and practice. The following sections report senior practitioners’ views about and experiences of these features, including potential barriers to implementation.
Greater emphasis on‘consultation and supervision’ function
Service leads believed that a change of emphasis or attention to acting as autism consultants and offering supervision to mainstream services was one of the key solutions to ensuring that adults with autism (without LDs) accessed services in a timely way. This might involve specific joint working or supervision of a specific case, supporting services with adjustments to their services and interventions (e.g. IAPT and Community Care Assessments), and more general autism awareness and education across the workforce.
Although recognising that integrating a consultative function within their delivery model was key, a note of caution was sounded in terms of the potential risks it posed for inappropriate and potentially harmful care and misdiagnosis:
. . . and you get people coming on a day’s training thinking they’re expert. That’s a danger, especially with diagnosis sometimes.
SAT9
For SATs to achieve a greater emphasis on consultative support to mainstream services, senior practitioners stressed that shifts in understanding and attitude were required within SATs, among professionals in other services and at the trust level.
Changes required to shift to a‘consultation and supervision’ approach
For SATs, senior practitioners noted that staff have to be prepared to work in this way, with the consequence of having less direct contact with service users. There also had to be an acceptance that working in this way may not rapidly result in efficiencies; it required significant‘upstream’ investment of time:
. . . [it is] necessary to conceptualise [it] as long-term goal. It’s gonna take 5 years, and then take another 5 years; it’s an ongoing piece of work, isn’t it?
SAT9
However, current pressures on SATs meant that it was very challenging to work with this longer-term view. This was identified as a significant barrier to putting more resources into taking this approach:
And I just don’t have the time, nor does everybody else. . . . It takes as long to do consultations as it does to see people really. It’s time-consuming to do it properly.
SAT5
For mainstream services, it was noted that there had to be an understanding and acceptance of this new way of working. All services reported this to be very challenging and a number of reasons for this were identified. First, the‘consultation and supervision’ model is relatively unusual in mental health services and, thus, as a way of working, it is poorly understood:
I think the default mode is, if you’re a specialist service you will take more responsibility.
In addition, it was service leads’ experience that some professional groups (GPs and adult psychiatry were mentioned here) were very difficult to engage. This was attributed to a lack of understanding of autism (e.g. regarded as a childhood condition) and a lack of interest and/or time:
Some are interested but, to be quite frank, the vast majority are not and they don’t have time to be interested.
SAT2
They’re not really, not enough people coming to, for supervision, or to training days . . . but we just keep plugging away. You’ve just got to keep doing it.
SAT9
Furthermore, it was noted that the process of‘educating’ other services about using SATs for
consultation and supervision, rather than as a service to refer on to, needed to be continual because of staff turnover. The example was given of IAPT services that use assistant psychologists who do not typically stay long in a post:
There’s new staff and . . . then new service managers. So it’s just reiteration.
SAT9
Finally, senior practitioners noted that resistance to a‘consultation and supervision’ model may be stronger in situations in which a well-established SAT was trying to shift towards this approach:
I think you’re in a better position if you’ve said that from the start than if you suddenly try and change along the way.
SAT5
To address this, one service reported that it was developing a‘consultation contract’ which set out the roles of the SAT and mainstream services.
For trusts, senior practitioners stressed the need for recognition of the resource implications to mainstream services of taking on greater responsibility for the care of autistic adults, and to ensure that staff training needs are properly met:
Trusts need to see the value. So we need the trust to want the people to be able to do that and to give them the time to do that in the context of everything else they’ve got to do, like you said, otherwise you’re just fighting a losing battle . . .
Ensuring the correct balance between consultative approaches and direct work
Despite support for an increased emphasis from SATs on providing consultation and supervision to mainstream services, there was also strong agreement that such an approach does not obviate the need for SATs to do any direct work or deliver interventions to autistic adults without LDs. This was because mainstream services are, by their nature, generalists and staff cannot be expected to have specialist autism skills nor to deliver autism-specific interventions:
It’s about reasonable adjustments, I suppose, isn’t it? Just like you would your workplace. You can’t expect [mainstream] providers to do the things we may want them to do. But you could expect them to make some tweaks, to make it more accessible.
SAT9
. . . there’s not a lot of services out there to do a lot of the work we want done. If it’s anxiety and depression, great, IAPT. If it’s primary care, go to your GP. But what about psychosexual work, what about the whole range of things that people with autism struggle with?
Supporting self-management and minimising dependency
Service leads agreed that the overall approach of SATs should be to minimise service users’ dependency on the service and develop their self-management abilities. This was an aspect of provision that had often already seen significant changes in some services.
A post-diagnosis psychoeducation intervention, covering information about autism and living with autism, was regarded as the critical starting point to supporting self-management:
. . . enable people to get to this point where they’re very aware of their condition, they’re very aware of what’s going to be difficult, and what then to do about it. And also people need to take that responsibility too, about making those choices about [for example] who you’re going to disclose to . . .
All services also offered other interventions, typically group delivered, that related to acquiring skills and understanding which enabled or supported self-management (e.g. social skills, coping skills and anxiety management).
Group delivery was, typically, regarded as a positive decision rather than being regarded as a solution to very limited resources. Indeed, a lack of adequate, protected time for practitioners to prepare for, deliver and review group-delivered interventions affected the quality of the intervention and the outcomes achieved. Identified benefits included the opportunity to hear and learn from others’ experiences, and using ex-service users as co-facilitators or speakers. In addition, the opportunity for self-development associated with simply going along to a group was stressed. A potential additional benefit was that groups (or some members) sometimes chose to continue to meet informally after the intervention was completed:
. . . we’ve got some self-sustaining groups that go on from there [group-delivered intervention].
SAT7
However, although advocating group-delivered interventions, practitioners made it clear that this required investing time in preparing and supporting individuals to attend:
Lots of people with autism would say,‘I can’t do a group’, but actually they can, it’s just they’re very anxious and it’s something that’s really scary to them. So, a lot of preparation work with them helps them go into that group . . . And making sure facilitators in that group are people who can hold that group, which is a skill in itself when you’ve got lots of different people . . .
SAT7
In addition to specific interventions, senior practitioners described more general ways of working with service users that supported self-management and minimised the risk of individuals becoming dependent on the service. Often these had been developed in response to observing undue dependency and/or a realisation that previous approaches to care were unsustainable:
[we give the message from the start that] . . . we cannot scoop you up and fix you, that’s the message, because everybody comes and families come thinking you’re going to scoop them up nicely, fix them, and then give them back, and we’re not able to do that . . . Because it’s not fixable.
SAT2
Yes, I’m an information giver, I’m somebody who can enable, but they don’t look to me to solve anything they want.
We made a decision several years ago now about things that we wouldn’t do . . . and it might sound really simple, but it’s things like not filling in forms with people. So we spend probably as much time not filling
in forms as we would if we actually filled it in for them. So it’s about that emotional resilience to show them that they, they can do it. So it’s kind of short-term pain for long-term gain really.
SAT2
Working with local peer-led networks
Services with strong local peer-led groups (including those for carers) consistently identified them as a core element to a sustainable framework of long-term support for autistic adults without LDs and their families. Connecting individuals to these groups was seen by some service leads as a key function of their service and a whole-team awareness of potential support groups/networks was important:
It’s just about using what’s out there and being really knowledgeable as a team about what is out there. It was noted that information provision may not be sufficient and that more proactive support may be required to enable service users to engage with such provision:
I think it’s about signposting to whatever services there are out there, to get them to be engaged with those services . . . Linking them into local groups, getting them into them. Getting the carers into anything you can get them into so that the carer feels they’ve got somewhere to go to as well.
We’ve got to use what we’ve got and it’s a matter of getting people into them. Making them, helping them to feel that they’ve got something outside of your service.
Practitioners suggested that the geographical characteristics of a locality (i.e. rural vs. urban) may affect the number and range of peer-led networks and other third-sector organisations with which SATs can partner.
Drop-in services and other low-level support
A number of services used drop-in services or telephone contact as a means of providing ongoing, low-level support. For some, access to such support was time limited and was the way in which stepped discharged was managed:
So we have this step-down service now where they can still link in with the service for 6 months after, perhaps have a telephone clinic each month; and then they tend to kind of just go off and obviously if they need to come back they can come back, but that seems to have worked really well.
SAT5
Others, however, offered service users the open facility to telephone the service for one-off contact and four services provided a weekly drop-in that was open to ex-service users. All those providing this sort of low-level, ongoing support were strong believers in its value. Specifically, it was identified as serving to pre-empt problems or crises, nurture independence and self-management skills and reduce the sense of isolation:
I’ve got somebody who rings me twice per year who’s been discharged for 4 years but they still they still ring twice per year. But that’s what keeps them going, they don’t go into crisis and end, end up, using loads and loads of services. And it’s generally only a quick phone call about probably nothing but it’s just a, a check in that we’re still there and they’re still there and it’s a 5-minute call and they’re gone; and, and I think that, you can’t replace that really, that’s, that’s really invaluable.
SAT5
. . . it’s the ‘there when you’re needed’ level of support. It might be a 5-minute conversation it might take half an hour. But just holding their hand through some difficulties until they learn to do it themselves. I think it’s really valuable and I have increasingly less contact with people as they learn to manage these
situations themselves. They generalise a lot better from that than from didactic teaching. People can turn up for half an hour and then we won’t see them again for 6 months, and then they’ll come again. But they know it’s there.
SAT6
With (our drop-in service), the idea of that is to help people network and then move on to back into mainstream.
SAT5
Light touch, access when you need it. Drop-in services are great . . . a little bit can, can go a long way, can’t it?
SAT9
There was a high level of interest among those not currently offering such services. However, some spoke of the difficulties of persuading commissioners that provisions such as this should be included in their service specification.
Summary
This chapter has reported senior practitioners’ experiences of leading and delivering a SAT. Unanticipated rates of referral and difficulties with securing onward referrals or discharging service users were presented as putting SATs under considerable strain. This was compounded by a lack of a commensurate increase in resources. All services had restricted their service offer or changed their models of service delivery to manage this situation. Unsurprisingly, this was felt to affect the quality of care that they were able to provide. Despite this, all believed in the value of their service and identified elements that were working particularly well. Autism expertise, multidisciplinary teams, and psychoeducational and self-development interventions were highlighted. Specific innovative practices or models of service delivery were described.
There was clear evidence that service design, delivery and practice had evolved and was evolving. This was driven partly by resource constraints and the pressures on services. Alongside this was the fact that SATs were a new model of service provision, set up in the relative absence of a body of clinical experience and knowledge to draw on, and no evidence base on service design, delivery and intervention effectiveness.
In reflecting on this learning, senior practitioners identified four features of SAT delivery models and practice that, they believed, would help ensure sustainable improvements in support for autistic adults without LDs. These were (1) placing greater emphasis on and investment in upskilling and supporting mainstream services to deliver care and support; (2) working in ways and delivering interventions that nurtured self-management skills and did not foster a dependency on the SAT; (3) where possible, collaborating with peer-led networks; and (4) providing drop-in services and other forms of low-intensity, ongoing support. However, senior practitioners noted the challenges associated with seeking to invest in and implement such developments within a context of immediate and pressing demands on their own services. Furthermore, the more general context of resource constraints meant services may be unwilling or not have the capacity to change how they work with and use SATs.
Chapter 5 Factors affecting outcomes:
practitioners’ views
Introduction
This chapter reports the second element of the findings from the nested qualitative study of SAT practitioners. Here, we report on two main themes. First, understanding and assessing the outcomes of SATs. Second, individual- and service-related factors that may affect outcomes. These findings, and those presented in the subsequent two chapters reporting service users’ views, provide important and useful contextual evidence before we turn, in Chapter 8, to report findings from the quantitative