Perceived barrier: health system as the barrier
On an institutional level, the UK health system was viewed as a perceived barrier to high-quality care as it was not believed to be designed to meet the needs of children with medical complexity. Clinicians had not been allocated enough time to perform person-centred care and felt as though their organisation lacked in an appropriate pathway, which encouraged silo thinking.
It was argued that the health system itself was not designed to meet the needs of these children as there were not pathways which were child specific. The uniqueness and complexity of conditions meant that there was currently not one pathway suitable, as though they ‘don’t fit in’, with one clinician describing it as their ‘biggest challenge’ (P03). Due to the environment of an acute system, this prevented some clinicians from providing high-quality care as they battled with time constraints and overwhelming workloads. These pressures left clinicians experiencing feelings of guilt and distress as illustrated in the quotation below.
The biggest barrier is actually how busy staff are and that actually really upsets me because I think everybody goes to work to do a good job and the reality is we have so many children to see in a short period of time (P38)
When attempting to navigate the health system and care pathway of this population, clinicians were met with communication barriers. Due to the number of conditions this patient group may have, it often involves different team members from a variety of specialties. Therefore, the need for effective communication is important. However, the health system design was believed to encourage silo thinking as specialties did not share information with others outside of their department.
Parts of the organisation and parts of the NHS not communicating well with each other. So, you know, we are still working in silo (P10)
In one hospital, attempts were made to delegate time and coordination (a previously identified barrier) to this patient group through the creation of a coordinator role. However, this was met with criticism as a ‘a very small amount of time’ was introduced and was ultimately viewed as ‘setting someone up to fail’ (P37). Similarly, many of the existing identified complex NHS services found in this article were found to lack in capacity, requiring additional funding or staff members. In one instance, one service only had ‘three’ available staff members working for both the service and the wider hospital meaning that it was ‘not consistent’ (P06). In another, funding and staff capacity was an issue.
We’re actually looking for more money at the moment because there’s a lot more we can do. We just need more man hours (P04)
Perceived facilitator: specific care considerations
To assist in improving care conditions for this population, many agreed that specific care considerations were required. These consisted of continuity, coordination of care, efficient communication or discharge planning. To assist in their implementation, clinicians hoped that these considerations would be made a requirement by their organisation.
To facilitate coordination of care, effective communication and continuity were highlighted by many, with one clinician describing communication as ‘high up’ on the list of facilitators (P03). The need for efficient communication related to two aspects of their care, one referred to communication with family members and the other, internal communication among clinicians. However, this meant that hospitals would have to allocate time to provide this. In some instances, clinicians referred to a dedicated individual to assist in building relationships with families and acknowledging this unique patient group. It was also thought that this would be helpful in improving continuity of care.
I think it needs somebody who is expert within communication, liaison, understanding the needs of these complex patients. (P26)
To improve the standards of care provided, clinicians were thought to require knowledge of extensive guidance surrounding discharge planning and other internal processes as part of their care considerations.
Complexity requires multiple processes, multiple meetings and multiple levels of communication, multiple levels of understanding (P10)
The introduction of organisational changes involving resources consisting of teams, partnerships and dedicated services were viewed as facilitators. To care for this population, collaboration among teams and an awareness of services was necessary.
You have to work alongside every discipline and every specialty within the Trust and building up those good rapports, not only within the Trust but then locally…Because that’s really building up those good relationships for the families but also for the professionals to know that they’re supported and there’s plans (P03)
Clinicians must interact with various professionals, both internal and external to coordinate their care. Therefore, strong collaboration and working relationships were seen as beneficial in allowing both clinicians and families to feel secure. To some, this was already viewed as part of their natural skillset as paediatricians.
I think paediatricians are very good at multidisciplinary teamworking and that’s something certainly that in my job we do an awful lot of that’s definitely a facilitator (P34)
In addition to collaboration with services, many of the clinicians believed that a dedicated service would act as a facilitator, some involving a medical lead.
There isn’t a clinical lead … We really need that. (P16)
In some instances, clinicians believed that interdisciplinary team members should be part of a dedicated service.
If you wanted a gold standard service … You’d want a clinician, you’d want a specialist nurse, you’d want a social worker (P11)
To some, nursing staff were thought to be another key element of a complex service as they would have allocated time and resources.
Nursing body, nursing team who are dedicated to children with complex needs (P18)