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Table 6 Additional participant quotations mapped to themes and the SST framework

From: Development of a managed clinical network for children’s palliative care – a qualitative evaluation

SST Theme

Indicative quotes

Goals and metrics

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 [for] 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)

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-h, 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 … 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)