Thirty-three participants from 15 organisations took part in phase 1. Fourteen of the 18 executive committee members took part in interviews and 19 others took part in the two focus groups. The majority of the participants in this phase were in management roles as a result of the make-up of the MCN’s internal structures. Twelve participants from 10 organisations took part in phase 2 (total 45 participants from 20 organisations (see Tables 4 and 5)). The numbers in phase 2 were lower than expected; some invited participants excluded themselves because they felt they didn’t know enough about the MCN and we reached data saturation earlier than expected.
Table 4: Study participant numbers by organisation type
Type of organisation
|
Hub organisations
|
Spoke organisations
|
Total
|
NHS
|
Non-NHS
|
NHS
|
Non-NHS
|
Phase 1
|
5
|
18
|
8
|
2
|
33
|
Phase 2
|
3
|
5
|
3
|
1
|
12
|
Total
|
8
|
23
|
11
|
3
|
45
|
Table 5: Study participant numbers by professional role
Type of role
|
Clinical
|
Nursing
|
Management
|
Other
|
Total
|
Phase 1
|
9
|
8
|
15
|
1
|
33
|
Phase 2
|
3
|
3
|
4
|
2
|
12
|
Total
|
12
|
11
|
19
|
3
|
45
|
Figure 2 shows how the themes were mapped onto the SST framework, summarises the identified factors affecting MCN implementation, and demonstrates their connected nature. The results are not presented in order of importance, but are structured around the SST, with each section of the framework presented in turn. The factors are described further below, using participant quotations to illustrate key points and relationships between factors. Additional indicative quotes are included in Table 6.
Table 6: Additional participant quotations mapped to themes and the SST framework
SST Theme
|
Indicative quotes
|
Goals and metrics
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Shared vision for the MCN
|
“If we have a completely effective managed clinical network, I think we should be able to offer all children across the region, whatever their diagnosis, whatever their age, wherever they live, access to good palliative care.” (Phase 1, participant #2)
“I imagine that it’s the standardised care and access to all children around the region, so they get good palliative care input and that it’s not a postcode lottery type thing, and everybody is doing similar things, but I don’t actually know what their [the Network] aims and objectives are (Phase 2, participant #47)
“It highlights those areas and provides a bigger lever to [say a particular region is] failing [its] children by not funding [this] adequately.” (Phase 2, participant #39)
|
Lack of outcome measures and measurement of outcomes
|
“Hearing things anecdotally […] we can’t prove that […] It doesn’t make any difference how many people tell me how much more confident they are, or how [many] families give us positive feedback, unless we can measure it.” (Phase 1, participant #2)
“If you’ve got a diabetes network, you manage everybody’s HbA1c [and] that’s what trust boards and people [work towards, but] we can’t give that.” (Phase 1, focus group 2 participant)
“Even things that we could measure, every organisation is measuring it in a different way. The people who do measure it aren’t always prepared to share that data with the other groups … There’s different people asking for different data, and it’s very unclear what data it is we’re supposed to be collecting.” (Phase 1, participant #2)
“We were asked to do a data collection exercise … it was just a bit confused and we piloted it but other services didn’t and there was a suggestion that if everybody didn’t do it then the research wouldn’t really have much value” (Phase 2, participant #36)
|
Having goals that are too broad
|
“I think, in retrospect, [you look at the Strategy] now and think, is it too broad? Are we trying to answer too many problems? Are we trying to fix too much in our first strategy?” (Phase 1, participant #5)
|
Competing organisational goals
|
“It’ll be a lot clearer for trusts and commissioners as to what’s expected, and that makes it easier for us to bargain about services, about what we need to deliver things.” (Phase 1, participant #21)
|
People
|
Varied knowledge about the Network
|
“I know it’s a bunch of people trying to coordinate the palliative care services across hospice, part hospital, and how to transition all the kids out into the adult arena and it provides updates” (Phase 2, participant #39)
“I’m aware of what the plan is in the sense that the network would like to have 24/7 a region-wide specialist palliative care on call service.” (Phase 2, participant #35)
“We are supposed to be a hub, I have no idea what that means. I am kind of being asked to sign up to something that I don’t really know what it means.” (Phase 1, participant #3)
“Well, I know that they run educational days … I think they’ve got a website as well …the ReSPECT document … they’ve been working on that together. I don’t know otherwise I have to say” (Phase 2, participant #47)
“It’s difficult for me to say whether it’s successful but all I can say, from my perspective is, there’s no impact on the group as far as I can see and if there has been and I don’t know about it, then it’s not been communicated to me.” (Phase 2, participant #36)
“I did attend a few of the network meetings … which fizzled out a bit and it always a bit hit and miss, and people didn’t attend. That’s why I’ve pulled away from it over the last few years. I’m not sure I know much about it.” (Phase 2, participant #40)
|
Role in palliative care is limited for some
|
“The people that were attending [Network meetings] were involved in palliative care, the main part of their job. It just isn’t in our role … I think that’s why I found it difficult because I just felt it was just a fraction of our work, the palliative side of it.” (Phase 2, participant #40)
|
Shortage of palliative care staff
|
“The children’s community nurses were telling me that they didn’t feel happy to manage these children, without somebody [a specialist] they could call. They are saying they don’t do this very often, and they don’t feel experienced in doing it.” (Phase 1, participant #2)
“Scaling up [specialist] services to actually provide on local levels such a small number of children would be not very cost effective.” (Phase 1, participant #16)
“24/7 specialist cover I think is another tricky issue because we haven’t got enough super specialists to go round.” (Phase 1, participant #6)
|
Infrastructure
|
Insufficient funding for the MCN
|
“This [should be] a long-term project. There is no way any of this is going to happen in a year [but] funding structures in the NHS and the government don’t allow for long term projects, and long-term investment.” (Phase 1, participant #16)
“It’s funded very little, we hardly have any funding at all, so it’s really people doing it in their own time, because we all want to achieve the same things, more or less.” (Phase 1, participant #18)
“They [hospices] see survival as being more important than, “Let’s try and deliver five strategic aims that are almost impossible to deliver in the next five years, and won’t be delivered in the next five years”. We need to focus on survival.” (Phase 1, participant #5)
|
A challenging geography
|
“Because we’re quite a big region it can take nearly three hours to get from one end of it to the other, maybe longer. So if we’ve got meetings inevitably there are people that are having to take out quite a lot of time out of their day. And so sort of voluntary organisations, there’s a time, there’s a cost element attached to that as well. So I think that’s a major barrier.” (Phase 1, participant #10)
“Different areas have different levels of need, so it’s about recognising that as well and tailoring it, I suppose, to the different areas, because there’s obviously areas that have got huge numbers of palliative care children with life-limiting conditions” (Phase 1, participant #18)
“The geography for [particular locality in the region] has already changed and it will be all about integrated care systems and if the managed clinical network is not around integrated care systems then it’s behind the times already.” (Phase 1, participant #6)
|
Importance of the Network coordinator
|
“I was contacted by a specialist in another tertiary centre about a patient from somewhere that she thought was my neck of the woods. [It] wasn’t, [but] I was able to [tell them to contact the coordinator]. Years ago, that would have taken a lot of trying to find that out.” (Phase 1, participant #21)
“[We cannot] achieve a strategy that is […] that ambitious with one member of staff.” (Phase 1, participant #3)
|
Technology
|
No current solution for sharing patient data
|
“So, when the child is in the hospital, it will flag up that they’re not for resuscitation. But the second they’re out of that, they’ll have to physically show a paper copy of it, because otherwise no-one knows it exists.” (Phase 1, participant #2)
“It’s great in theory to have a 24/7 service that you want to provide a telephone service for, and that’s great, but if you can’t access the medical record of the person that you are giving advice to in the region then that’s going to be very limited in what you can actually achieve.” (Phase 1, participant #21)
“My advanced nurse practitioners would be really nervous of … they are alright with their own cases because they know the children and they know they have got access to the notes, but doing that for somebody else’s children, they would be very nervous about that.” (Phase 1, participant #5)
|
Different recording systems impede MCN evaluation
|
“A lot of the work that happens in community nursing teams and hospices is done on paper, paper and pen. We are not fully digital, we’re not even getting to the majority of being digital.” (Phase 1, participant #2)
|
Culture
|
Different definitions of paediatric palliative care
|
“I think, to solve the problem, we need to go right back to the beginning, and first of all clarify what are our definitions, what are we actually doing? Which of the people we’re trying to do this for, and for what period of their life?” (Phase 1, participant #2)
“To progress in this conversation with the CCG leads, we’ve got willingness, we’ve got people coming to the table, we’ve got people round the table, then we need to be really clear about what our definitions are about which group of young people and which function we’re actually looking into” (Phase 1, participant #8)
|
Palliative care not a priority for funding
|
“There’s lots going on out there that have got big budgets attached to them, and big teams, and I guess that’s where the focus goes. And I understand that, but it just means we have a very small voice as a collective, when we talk about children’s palliative care.” (Phase 1, participant #5)
“In some ways, I feel that a lot of the hospitals across the region have almost got away without providing palliative care, even though it’s recommended by NHS, and it’s recommended by NICE, because they feel the hospices are picking it up.” (Phase 1, participant #2)
“If the hospices were funded properly in the first place, we wouldn’t be in the position that we are in … it is about protecting your own organisation first and foremost” (Phase 1, participant #3)
“[We need] some senior leadership saying, “No, actually, this is a priority, this is ring-fenced money to spend on children with palliative care needs.” (Phase 1, participant #16)
|
Organisational cultures differ
|
“I think making it work is not an issue about money, it is an issue about culture. And I think one of the issues about culture is that in order to collaborate and work together you have got to be able to give stuff away, and if you are not prepared to do that you are never going to be able to move on.” (Phase 1, participant #3)
“I think there’s always an element of that change might mean a threat to my organisation or to my job. I think networks by their very nature are about collaboration, coming together and often there’s difficulties around competition between individual organisations especially when it comes to funding.” (Phase 1, participant #10)
|
Processes and procedures
|
A governing structure that fosters collaboration
|
“Bringing people together and having organisations and individuals from organisations sat round a table, does just generally improve cooperation and working practices … raises awareness of how things are done, and improves the way people work together.” (Phase 1, participant #16)
“I think it’s possibly that a lot of the activity is quite high level in talking to NHS England, having conversations at that level and it doesn’t feel like there is anything that’s influenced practice on the ground in any way, I would say.” (Phase 2, participant #36)
“Our managed clinical network is struggling to show its effectiveness because of the difficulties with data collection and outcomes.” (Phase 1, participant #2)
“I think that progress has been made, but I can’t tell you where we’re at … And I think a lot of it is still planning how it’s going to be implemented” (Phase 1, participant #18)
|
Variable involvement of member organisations in governance
|
“We see a differing cast [each meeting] in terms of those individuals who attend. Some organisations have never been represented at the executive committee, some have been represented but by different people, at different times, at different levels of seniority.” (Phase 1, participant #5)
“So some organisations have never been represented at the executive committee, some have been represented but by different people, at different times, at different levels of seniority.” (Phase 1, participant #2)
“I am kind of being asked to sign up to something that I don’t really know what it means, and I am worried that it will end up having financial implications and that if I can't meet them, I will then be penalised.” (Phase 1, participant #3)
|
A mechanism for developing and sharing best practice
|
“There will be variation in what [services] do, and how they do it. And so, implementing any kind of minimum standards and expectations could be difficult, because if I involve some [services] changing what they’re already doing, or stopping something, starting something new, which they might not want to do.” (Phase 1, participant #16)
“The 24-hour, seven day a week service that we would like to offer, I’ve been involved in that, and that feels like how would we like it to look, how would it work in practice, but we’re not ready to set that up yet.” (Phase 1, participant #18)
“We have written a document for the 24/7 nursing model, which has been done a small clinical group, where it needs to be approved by commissioners, and funding identified to try and get the teams to be properly funded, so they can flex up to provide 24/7 care” (Phase 1, participant #15)
|
Training that is well received but limited
|
“I got more of an understanding of how different professionals approach situations … I think in many ways my approach has I would say improved.” (Phase 2, participant #35)
“It helps you grow with your own professional development and you definitely take it with you and wear it … they’re really important and if we could go all the time, we’d love to” (Phase 2, participant #45)
“I’ve read the itineraries for this year’s conference and it’s just totally put me off really […] because it is completely medical. There doesn’t seem to be any sharing about […] actual patient care in the hospice.” (Phase 2, participant #37)
|
Goals and metrics
Nearly all participants in both phases articulated a shared vision for the MCN: to achieve equitable and high-quality children’s palliative care provision and develop a 24/7 model of care. However, a small number raised concerns that the MCN’s goals were too broad, which one participant linked to the definition of palliative care adopted by the MCN:
“[Our] definition […] talks about [providing services] from the point of recognition of a life limiting condition all the way through to death and beyond. If you’re trying to provide that for everyone […] actually it’s a massive task.” (Phase 1, participant #2)
Some participants in both phases acknowledged that they were most concerned with the care provision and future of their own organisation and didn’t want to compromise that to improve the MCN.
“[We are focused on creating] a business model that’s financially sustainable […] so initiatives like the [MCN] can sometimes play second fiddle.” (Phase 1, participant #5)
Others stated the MCN was a positive distraction as it helped children’s palliative care to remain on the agenda in their organisation.
“[The MCN gives] a degree of status that means it’s difficult for both the trust and the commissioners to ignore.” (Phase 1, participant #21)
The lack of a standardised outcome measure was noted as a significant barrier to implementing the MCN because it made it difficult to demonstrate the MCN’s worth to funders and prevented evaluation against agreed standards. It also presented challenges for the MCN to agreeing how success should be measured.
People
Despite sharing the MCN’s vision for children’s palliative care, participants varied in their awareness of the MCN and its work. Several potential phase 2 participants excluded themselves from the study because they felt unable to say anything about the MCN, and many participants in both phases of the study were not clear about the specific purpose or role of the MCN.
The small number of specialist palliative care professionals and community nursing teams in the region were identified by numerous participants in phase 1 as a key barrier to the development of a 24/7 community-based service model, which was a core goal for the MCN.
“There are areas of our geographical patch that don’t have good access to community nursing. It’s not about the skill of the people involved. It’s purely about their presence, their availability.” (Phase 2, participant #39)
The shortage of specialist palliative care staff was recognised to be a national problem; however, there were more mixed views amongst participants from both phases about whether more specialist palliative care professionals were needed, or whether the solution was about working differently to ensure community nurses and others were able to access the specialist expertise available.
Infrastructure
The limited and short-term nature of funding for the MCN was identified by many as a barrier to effective implementation, as was the fact that the MCN relied on the commitment of key individuals who were not MCN funded.
“We’re continually having to look at getting that funding on an annual basis [and that process] takes away from the work that we’re doing.” (Phase 1, participant #10)
Insufficient funding was a cross-cutting issue, impacting on the MCN’s ability to address barriers related to technology, training, service development and staffing. It also meant change was slow to be implemented, and individual and organisational engagement suffered because barriers were perceived by member organisations as being too challenging to overcome.
The size and geographical diversity of the region was another important barrier. Participants from organisations on the geographical periphery of the region were concerned that the MCN’s resources may not reach them, and also reported difficulties engaging with meetings and events that were held centrally. Some participants were concerned that if care was standardised across the region it wouldn’t be appropriate for some locations with local idiosyncrasies.
“One model that fits all [would be] a real challenge because […] the service pattern and structure in each is place is different.” (Phase 1, participant #8)
The appointment of the MCN’s full-time coordinator was named by nearly all participants as the most important enabler for formalising the MCN’s governance structures and driving forward the MCN’s goals. The role also provides the MCN with a single site of contact and liaison point to raise awareness and keep members updated.
Technology
The MCN’s hubs and spokes use different patient record systems and there is no technological solution to share these data. This was identified as a cross-cutting barrier to implementing the MCN, impacting on its ability to improve access to specialist palliative care, increase co-ordination and collaboration between services, and an impediment to the MCN’s plans to create a specialist 24/7 service, which is reliant on health professionals providing telephone advice or care for children they do not know.
“The classic is if the GP has started long acting morphine [and] I can’t find that [in their records] because [the GP uses a different system]. You’re reliant on people being able to grab you and phone you [so] it’s not a robust system.” (Phase 2, participant #46)
Although data incompatibility is a known issue impeding joined-up care nationally, participants also stated it impeded the evaluation of the MCN due to the different information that is recorded by different organisations, the differences in how the same information is recorded, and the different functionalities for searching and extracting data. These issues were also highlighted by participants in relation to a pilot data collection process carried out by the MCN to understand hospice provision. Participant feedback suggests that some organisations will find it difficult to use a standardised data collection template and may worry that their provision is not being adequately captured. Participants also stated there is also a resource implication for organisations who have to manually search for information.
During this study, the MCN had secured funding for a virtual community of practice focused on improving the transition of children into adult services. Several phase 1 participants believed this could facilitate more accessible training, peer support and collaboration, and sharing of expertise and best practice. Although not yet implemented, this could be a potential enabler for the MCN in the future.
Culture
Many participants in both phases talked about the impact of the diversity in member organisations: each has different priorities, funding structures, practices, and governance processes. The differences between the NHS and hospice organisations at the centre of the MCN – in terms of scale, models of care, specific populations served (e.g. different transition points into adult services, and security of funding) – were specifically highlighted as a key barrier to developing a co-ordinated MCN with shared governance, data, resources and care pathways. These differences also contributed to the uncertainty expressed by participants about the MCN.
“I think there are issues around the definition … you know, how the term palliative care is used in different places … I just think that if we’re talking about specialist palliative care we need to make sure we’re talking about specialist palliative care consistently.” (Phase 1, participant #6)
As highlighted previously, the limited amount of funding for the MCN was identified as a barrier to its development. For some participants, this reflected the fact that funding children’s palliative care is not a priority for healthcare commissioners.
“Children’s and young people’s palliative care […] hasn’t been funded properly by the NHS for goodness knows how long” (Phase 2, participant #35)
Several participants, principally those in phase 1, believed that the lack of sufficient funding for palliative care more generally placed constraints on what member organisations were able and willing to offer to the MCN, in terms of sharing and expanding resources and expertise.
“One of the barriers is that there’s not enough funding to go around, and then that creates challenges and competition […] between different organisations.” (Phase 1, focus group 1 participant)
Processes and procedures
Participants in phase 1 generally felt that the MCN has a clear governing structure that includes all the hub-and-spoke organisations that make up the MCN and has a more formalised approach compared with the informal network that existed previously.
“It has changed. It feels a bit more formalised now, a bit more structured; [there are] agendas and actual projects rather than just a forum that people went to.” (Phase 1, focus group 2 participant)
This opinion was not unanimous, however: one participant in phase 1 referred to the MCN as a ‘talking shop’ and several other participants expressed concerns about the changeable and partial involvement of organisations in the MCN’s governance structures. Some participants in both phases also expressed uncertainty about whether the MCN itself had led to formal changes in the provision of palliative care, although their beliefs about why differed.
When asked what had been achieved, many participants in both phases talked about the MCN’s role in setting standards for palliative care in the region, including guideline development and endorsement. However, the varied knowledge and participation in the MCN across the region is likely to affect adoption of these, and as one participant noted, there is no legal requirement or agreed responsibility that members will use them.
Training provision by the MCN, which includes an annual conference and various study days, was positively evaluated by a number of participants who commented on the impact it has had on their practice, both from the training provided and the opportunity to learn from others working in children’s palliative care.
However, several participants, particularly those in phase 2, believed that the training offer was limited and needed to be expanded. There was evidence that staff in less clinical roles or those in services that provided universal services may not be benefiting, risking a widening of the skills gap between those already engaged in palliative care and the MCN, and others that are not.
“I just felt it was all attended by people who were in that world. I didn’t really feel it was aimed at [non-clinical staff].” (Phase 2, participant #40)