‘A big gap in an awful lot of places’: inequities in transitional care
A range of network transitional care descriptions was found, ranging from ‘brilliant’ (FG 7.1; 362) with some centres having ‘very clear transitional pathways’ (I 6.1; 118) to others with ‘not very clear’ (FG 8.1; 631) services, and ‘a big gap in an awful lot of places’ (FG 7.1; 366). One centre previously had ‘a good service’ but this had now ‘collapsed’ (FG 9.1; 469). These descriptions related to healthcare professional’s perception about the holistic transitional care process.
However, the main focus of discussion was in relation to one part of transition—the transfer of care from paediatric to adult care. Echoing findings from previous research , provision of designated transfer or hand over clinic in a network were not a universal occurrence. There was a spectrum of involvement from adult rheumatology, ranging from an adult rheumatologist joining the paediatric team to see ‘the last few [teenage] patients at every [network] clinic’ (FG 7.1; 371), to a local paediatrician resorting to ‘writing to the GP [to] refer them to an adult rheumatologist’ (FG 8.1:637). In centres without formalised transfer arrangements, there was acknowledgement by professionals from all backgrounds that joint consultations with adult and paediatric teams coming together were ‘ideally how it should be’ (FG 8.1; 638).
Although some teams had prepared young people to manage their own consultations ‘without [their] parents’ (I 1.1; 565) and had documented transition plans, one team acknowledged that they just ‘put’ patients straight into the adult service, akin to going ‘with nothing’ (ERF FG 9.1; 473).
‘It’s on the horizon’: transitional services evolving
We found that clinical networks predominately focused initially on providing (in a variety of different ways) specialist care locally and focus on transitional care and youth friendly services was not an early priority for paediatric rheumatology teams. However, as networks have evolved, transitional care services are ‘beginning to happen’ (FG 7.1; 348).
Restructuring of healthcare provision in some regions has resulted in a shift of children’s care (or planned shift) away from an adult-led rheumatology service to one which is more appropriately ‘paediatrically driven’ (FG 7.1; 190). For these services, there was then a need to develop a more formalised transfer of care arrangement. This had previously not been required as some young people with JIA had ‘never met’ (FG parents 2.1; 273) a paediatric rheumatologist, because ‘they all stay with me [adult rheumatologist)]’ (I 8.1; 433). With reconfiguration of services, establishment of a transition service was ‘on the horizon’ (I 8.1; 442).
‘Transition … that works brilliantly’: what makes the transition process work
A number of factors related to the healthcare infrastructure and certain characteristics of the individuals involved were reported to make the transfer part of transition process in a clinical network ‘work brilliantly’ (FG 7.1; 362), or more easily.
For paediatric rheumatologists who had experience of working across a number of centres, establishment of a transition clinic was easier if one adult rheumatologist per centre acted as the receiving clinician and there was ‘only one hospital to transition to’ (FG 7.1; 398).
‘Effective transition’ (FG 7.1; 359) was unsurprisingly easier with enthusiastic, motivated, and interested professionals from both paediatric and adult services acting together as advocates for young people. Good interpersonal relationships of key individuals helped form these links between paediatric and adult services, facilitating transfer of care frequently on a ‘patient-by-patient basis’ (I 6.1; 131). Even when there were multiple referral options, the preference was based on prior experience, and knowing ‘who [would] care for [them] in a way that [paediatric teams] want them to’ (FG 7.1; 413). Flexibility of healthcare professionals and ‘individual transition plan[s]’ (FG 7.1; 361) was evident particularly in smaller network clinics, where there were only a few patients requiring transfer; designated fixed transition clinics were recognised as not necessary. In these centres, transfer arrangements were made on an as required individual basis, determined by discussions between paediatric and adult multidisciplinary teams.
‘Things that can be tricky’: challenges in the transfer process
A number of challenges or ‘things that can be tricky’ (I 10.1; 156) were encountered in relation to the transfer of care between paediatric and adult services in clinical networks. These included workforce shortfalls, differences in service priorities and healthcare infrastructures, standards of care and historic encounters.
Services were vulnerable around the time of staff retirement when there was a delay in appointing a replacement or when ‘there’s no one to do it because [the paediatrician] didn’t have any hours’ (FG 9.1; 500) for transition in their job plan. This workforce shortfall included staff in both adult and paediatric services and also the MDT; ‘it was both medical and nursing, they couldn’t get anyone in nursing or anyone continuous to do it’ (FG 9.1; 479).
Service priority differences
Transition service development was affected when professionals, (from both adult and paediatric teams), and management had other more pressing priorities. ‘We agreed, as a network, what our priorities were’ (I 7.1; 191). Establishing links in ‘areas maybe where a network is a new idea that hasn’t been perceived to be needed in the past’ (I 5.1; 274) has taken time as paediatric rheumatologists ‘enter into negotiations to then try and arrive at that in a way that is acceptable to both parties’ (I 5.1 264).
Healthcare infrastructure mismatch
Development of designated transition clinics and transitional roles was difficult if adult healthcare services used young person’s postcodes to dictate where they are referred. ‘Even though there are interested people, they’re only allowed to see the people who go into their geographic bit of the region.’ (FG 7.1: 428). So, locality was prioritised over a young person’s specific needs.
Differences between a specialist and local care provision were more noticeable when network models involved professionals physically working between different hospitals. Although ‘closer to home care’ was acknowledged to be better for families, when professionals perceived that their specialist service was better than that provided locally, frustration in not being able to offer the same standard of care was apparent.
‘if they travelled here they would get a better service so it might be convenient for them to be seen locally but I’m not sure that’s the same level of service that they would be getting if they came here’ (FG 1.1; 231).
This view may be justified for specialist centres who had accreditation for their transition service (for example, ‘You’re Welcome’ status, a UK Department of Health initiative of Quality Criteria for young people friendly health services ). However, the ‘view that theirs [transition service at the specialist centre] is better…. is that’s something that we [the local team] just keep developing and working on’ (I 10.1; 185).
In one specialist centre, around the age of 12–14 years, an early transfer of care occurred from the paediatric centre to an adolescent centre. Up until this time, the paediatric specialist centre shared care with local link general paediatricians providing care closer to home. However, one link paediatrician had found that few, if any, young people’s care was transferred to their local adult rheumatology services. This link paediatrician had experienced that ‘they [local adult rheumatology] really do not like shared care; they want one consultant having the ownership and not sharing the care with someone else’ (FG 8.1: 631). Reasons for this included the suggestion that the adult rheumatologist had voiced that they had ‘had exactly the same training’ as clinicians from the specialist centre, and ‘d[idn’t] see kids going back to [the specialist centre] and then coming here locally as different’ (FG 8.1; 692).
Difficulties in establishing smooth transfer arrangements involved ‘much more thorny issues’ (I 6.1; 112) and even conflict, when professionals (from both paediatric and adult rheumatology) had ‘a difficult time’ (I 9.1; 285) during network establishment. This was particularly noticeable when care had been shifted or ‘taken’ (FG 1.1; 398) away from adult to paediatric services. This change in service delivery was welcomed by some adult rheumatologists as ‘we’re not very good at talking, thinking around paediatric side’ (I 8.1; 86), but harder to accept by others, as ‘it was my thing. It was, and I’d been doing it for all those years’ (I 9.1; 286). Despite shifting roles towards the adolescent age group and transition, the establishment of clinical networks had in some areas adversely affected relationships.
One specialist paediatric team
‘had a couple of patients from [a local hospital]…. who were very poorly and came to us for specialist care and you know we are talking a couple of years in … in the care [of a general paediatrician or adult rheumatologist]’ (FG 4.1; 433).
They had found it difficult to ‘send them back to local care’ (FG 4.1; 436). One young person was now nearing the age for her care to be transferred to adult services, and the specialist team had found that they were
‘actually almost having to persuade them that they are going to get good care there [back at their local centre] (FG 4.1; 444).
Transferring back to their original local service was a perceived potential problem, particularly if there were no strong links or confidence in local services. This clearly highlights the need for collaborative working.