CHAPTER 6 COMMUNICATION AND INFORMATION SHARING
Introduction
6.1 Like all other services, key to the provision of service for children and young people is who has the knowledge about a given condition, about the services on offer and how that information is conveyed within professional groups, across professional groups and to non specialists and, of course, to parents and the children themselves.
6.2 This chapter looks at the many different aspects of communication between organisations, professionals, children, young people, their families, carers and other colleagues. It also explores information provision and sharing, record keeping, and organisational supportive infrastructures.
6.3 NAHPs working with children and young people did so in a variety of contexts, backgrounds and settings. Most NAHPs delivered services at school or at home, with a significant number also providing services in nurseries and Medical/Health Centres. Other settings mentioned included child development centres; childcare centres; community centres; music studios; preschool centres; respite accommodation, and sports centres.
Information transfer: opportunities and challenges
6.4 The extent to which information and documentation was shared varied among the sites, owing to differing IT systems, record keeping protocols and accessibility related to geographical location and organisational supportive infrastructures. There was little evidence of electronic record keeping. Electronic documentation was considered to be at the very early stages of development, although systems for 'children at risk' were available.
"No electronic communication - systems don't speak to each other. It's in the pipeline, but has been for some time" (Health Visitor, Duncan).
6.5 Duncan paediatric physiotherapy services utilised a specialised management information system. This held clinical, managerial and audit information relating to diagnosis, treatment and duration of care. It was hoped that this would be rolled out to other allied health professionals, but to date this had not happened. It was felt that "if all staff put in stuff about their own patients and we can then produce excellent reports for trends. Again, if we had time, it could be used for clinical audits and systems" (Manager, Duncan).
6.6 The majority of children being cared for were linked to several different sets of documentation. These tended to be paper records, with differing criteria for shared access by different service providers. The Integrated Shared Assessment tool ( GIRFEC, Section 3 - Scottish Executive 2005d), offering a more integrated approach across agencies, was viewed to be in its infancy. The Single Shared Assessment ( SSA) tool, which creates a single point of entry to community care services, leading to better use of resources and more effective outcomes, was not generally referred to or in use.
6.7 A large city in Banquo had implemented a shared planning and information record for children with complex needs between 0-3 years old. In partnership with parents, one individual, with knowledge of all other services, was appointed as key worker. Increasingly, that had tended to be HVs, who have known the family through the antenatal period, emphasising continuity of care . "Essentially there is one record that everybody can access and see what is going on" (Manager, MacDuff) . This record detailed all involved staff, whether they were in education, health, social work, voluntary sector, along with their role. However, it was not electronic, although there were plans to develop that in the light of GIRFEC, as a template.
6.8 In one city in Macduff, nursing staff were non geographically based and spread across 28 teams throughout the city. This had an impact on communication systems and the sharing of information, as highlighted below:
"The way we work… at the moment conspires against us in some ways … if you've got two children in the town with similar needs/conditions, but they are with different GP practices, there's no way of sharing that information" (Manager, MacDuff).
6.9 Where staff worked in close geographical proximity, such as in Child Development Centres, or were based within a hospital, information sharing was less problematic. Paper copy notes were easily accessible, and increased opportunities to meet and/or speak directly to each other were afforded. But elsewhere, problems could arise, such as duplication of information, for example,
"If a new family is referred, and [X] comes in, and I come in, and somebody else - family has to go over the same information. They're telling the same things over and over, and get really distraught about that sometimes. They really don't like it." (Community Learning Disability Nurse, Duncan).
6.10 In a bid to reduce such duplication, Banquo utilised a system whereby if a child with complex needs was required to go into hospital, they brought their 'passport' in with them. This was a folder giving detailed information about themselves, such as their food likes and dislikes, their preferred positioning and required exercises with regard to physiotherapy input. This avoided different professionals asking the same questions repetitively, and also made life easier for the child and family members. All health professionals who cared for the child in the community contributed relevant information to the passport. This was generally regarded as an example of good practice.
6.11 It was felt that there needed to be more investment and improvement in equipment, software and training to support access to information such that it can be communicated, shared, maintained and updated electronically. This would help improve the limitations imposed by geographical challenges, such as remoteness, which impact on accessibility of services. This would also lead to an improved and more equitable service for practitioners and service users.
6.12 In one site, a manager indicated that many staff members had community experience, had access to good networks, and knew where to get information regarding unusual or complicated conditions, as the vast majority had access to personal computers and the internet.
Communication
Referral
6.13 Referral systems differed from region to region. Participants indicated that children and young people with complex needs could be referred to NAHP services by a number of health, social work and education professionals. Most AHPs cited more than one type of professional that could refer directly to their services, such as schools, education psychologists, child community health staff, HVs, and SLTs. A lead SLT (Duncan) stated that SLT had an open referral system, and the most likely referrers were HVs or community paediatricians, while another SLT in the same region stated that it depended on the age of the child, whereby preschool children were referred by HVs, but nursery and school age children were referred by education staff.
6.14 Referrals to nurses were equally varied; a CCN (Banquo) stated "Usually hospital staff refers initially (consultant/dietician/ ward nurses)" while a Clinical Nurse Manager explained "this is a home care package commissioned by social work department in consultation with health board". A public health nurse (Duncan) described the situation in special schools whereby all children attending special school are referred to outreach CCN, or occasionally acute services.
6.15 NAHPs tried, wherever possible, to access additional staff with specialist roles for CYP services, such as a community nurse, community children's nurse, learning disability nurse, looked after children's nurse, specialist teacher, epilepsy nurse, child protection link health visitor, school nurses and a paediatrician.
Vertical and Horizontal Communication Systems
6.16 Frontline NAHP practitioners were fairly positive regarding communication issues. Many stated that it was possible to communicate with both higher levels of management and partner agencies in relation to service provision and development. Almost half of the practitioners believed that "there are opportunities to communicate with committees/managers and directors in relation to service development". Similarly, they also agreed that "there are clear methods of communication between professionals, children, young people their families, carers and other colleagues".
One participant spoke very positively about professional support:
"We've got lead support groups for our lead people, and the last peer support group but one, it was wonderful, we just didn't follow the agenda at all, each lead person said something, and everyone else said, Oh, I could help you with that! And the networking was wonderful, and that was across agencies, and you couldn't have written it better. That definitely worked, I'm not saying it'll happen like that every time. But when you're having teams like this, everybody does learn - it's definitely coming together, inter-agency working." (Lead Officer, MacDuff).
6.17 Managers indicated that they sat on various committees, and were members of groups,
"I'm on the children's health support group, and currently chair the senior paediatric nurse group as well" (Manager, Duncan).
Whilst senior management attended strategic meetings concerning policy implementation, some grass roots workers expressed their frustration that communication was not always a two-way process. This raises the issue of vertical and horizontal transmission of communication between the various professions and across multiple service providers. For example, within SLT in Banquo, it was reported that there was little awareness of how best to share information and establish appropriate communication networks. These processes and procedures were felt to be ad hoc.
6.18 Issues related to dissemination of information were raised, "The information that comes out of that is not even disseminated down, is it? Not in HV." (Health Visitor, Duncan). "At ground level, we don't get information. We share amongst ourselves" (Learning Disability Nurse, Duncan) was a view expressed by grassroots practitioners. Participants commented that within the region, there was a consultant paediatrician who had a special interest in complex needs, and who was very good at disseminating information and making contact with staff. This was deemed to be advantageous, and ought to be replicated.
6.19 Some grass roots participants were disgruntled by the lack of representation at meetings which then impacted on their ability to contribute to strategic planning and development of services for CYP. This was particularly relevant when practitioners were requested to deputise for managers, often at short notice. There was a view that to be effective, all communication, in whatever format, should have issues and concerns clearly highlighted, so that practitioners were cognisant and therefore fully able to contribute and deputise at meetings.
6.20 One example of good representation given was of a regional child health strategy group (MacDuff), which had a Complex Needs sub-group. This 'pulled' the relevant heads from all agencies to meet together at a strategic level to regularly review services for CYP with complex needs. The meetings were seen as an opportunity for people to bring issues which could then be incorporated into an action plan, thus ensuring professional inter-agency accountability and responsibility. However, one participant stated,
"If there was a better cross-section of people attending, it would be so much more effective, because it's the only group that meets to discuss children with complex needs, and there's a need for that, but unfortunately there isn't a good representation from all agencies." (Lead Officer, MacDuff).
6.21 The issue of communication networks for all stakeholders was raised, with a feeling that there was a lack of robust networks for children's services. Whilst networks existed within individual sectors, there was little cross-sector communication, so it was not possible to send an email, for example, to contact all key stakeholders.
6.22 Determining the usefulness of information sharing with other professions was at times viewed as challenging;
"You're either in the knowledge, or out of the knowledge. And you can't make a judgement across professions, what the relevance of this bit of information is for other people. Often, you've got the bit of knowledge that others would find very useful." (Paediatric OT, Banquo).
6.23 One manager commented that a Scottish Executive recommendation (resulting from an earlier review of children's therapy services, (Scottish Executive 2003)), to include managers of children's services in strategic planning, had not been responded to.
" … I was involved in the group that put together the blue book … for the children's services therapists … one of the recommendations in that was that health boards should involve managers of children's services in strategic planning and that hasn't happened" (Physiotherapy Manager, Duncan)
6.24 Some doubts were raised concerning the supportive aspect of multiprofessional and interagency partnership meetings. There was a view that at times, the uniprofessional perspective was in danger of being overshadowed
6.25 There was a desire for more opportunities for multi professionals to meet and truly share experience, expertise, knowledge and skills, and managers to promote integrated communities of NAHP practitioners, working with CYP with complex needs. Forums for Heads of Services tended to focus on adult service provision, and participants felt that their remit for working for and championing CYP was overlooked.
"If we had, for example, a head paediatric dietician for MacDuff, who could actually spend time looking at the service, putting in these bids …whereas we're trying to do it on quite an adult basis, and having managers who don't really care, or haven't taken the time to find out what is actually going on. That's been a big gap." (Dietician, MacDuff)
At its simplest, it was felt that communication boils down to " the right information, given to/by the right people, for the right child, at the right time" ( SLT Manager, Macbeth).
Advocacy
6.26 Involving children and young people is emphasised within 'Delivering a Healthy Future' (Scottish Executive 2007), and highlighted again in the Equality and Diversity Impact Assessment Toolkit ( EDIAT) ( NHS Scotland 2007). The Patient Focus and Public Involvement ( PFPI) Agenda ( NHS Scotland 2001) reinforces children's rights to be involved and participate in their care, as supported by The Children (Scotland) Act 1995, and the United Nations Convention for the Rights of the Child Article 12 ( UN 1989).
6.27 Advocacy presented itself as an issue during the course of the focus groups. Children's and families' views were not felt by some to be represented at strategic level. In order to address this issue, practitioners felt that opportunities to attend meetings at this level would be beneficial. Knowledge regarding children and young people's voluntary organisations appeared limited. Some acknowledgement of the role of advocacy being provided by organisations such as Children First, the Children's Hearing System, and Special Needs Information Point ( SNIP) was apparent. However, some focus group participants indicated that the work of bodies, such as the Young People's Health Advisory Group and the Children's Commissioner, held little relevance with regard to their day-to-day working. One manager acknowledged that the official bodies had made some, albeit limited, impact,
"I have to say yes, but it has got to a certain level, I don't know how much has filtered down to the operational managers" ( SLT Manager, Macbeth).
6.28 With regard to advocacy, and its role in influencing service delivery, grass roots workers stated their aim was to ensure optimum service provision for children as best they could, with one focus group participant stating:
"I think the provision for early years has a well structured pathway …as soon as children are identified, it doesn't matter whether they get a label or not, we can get services started. I think we have quite a good working relationship with other services. We work very closely with preschool, home teaching, education and with all the local children's providers so that we can get them the help that they need when they need it. Some children are more straightforward than others, and things just seem to fall into place; they get a good service package" ( CDC Coordinator, Duncan)
6.29 The advocacy role was taken seriously by all participants, and some expressed concern that children and their families were not fully represented and/or consulted in respect of their needs. It should be noted that seeking the views of children, young people and their carers and families was not the remit for this project.
6.30 A large number of participants felt that services could be tailor-made to the individual needs of the children and young people with complex needs. However a large number were unsure of the extent to which the views of this client group were taken into account when planning services, and many felt that indeed they had not been. In relation to advocacy, it was difficult to conclude that provision was equitable or truly tailor-made to meet individual needs.
6.31 Counterbalancing that view, the underpinning ethos of the educational needs support group (Duncan) appeared empowering both to staff and the recipients of the service. Opportunity for decision making, and autonomy related to allocating funding appeared to provide a forum for emphasising advocacy and staff job satisfaction.
"It would be nice to think that the budget is following the children out into the community, because parents need that support, they've got their children at home. To a certain extent, monies can be applied for if there's particular needs, there's a shared budget throughout NHS Duncan - Exceptional Needs Support group, so that children who require nurses etc. to be in the home, then there are special budgets." (Manager, Duncan)
6.32 In 'Delivering a Healthy Future: An Action Framework for Children's and Young People's Health in Scotland' (Scottish Executive, 2007) the emphasis focused on the needs of children who may be vulnerable, or at risk. The need to provide consistent and equitable support to children and their families, based on best available evidence, was highlighted by participants in all regions.
6.33 Getting it Right for Every Child (Scottish Executive, 2006c) set out an approach involving practice change, legislation and removing barriers to ensure that the health, education and social care needs of children were met. Anxieties were expressed in relation to Visible, Accessible, Integrated Care (Scottish Executive, 2006a) which proposed a new service model, intended to revise nursing services in the light of current policy drivers. Although this document aims to support people to live healthier lives in their homes, and reduce health inequalities, research participants stated concerns regarding their capability in responding to a changing role.
"the Scottish Executive is constantly introducing 'new and innovative services' often on a short term basis which will be initially funded and then 'mainstreamed'. The strain of this on services is becoming more and more apparent. There is a lack of capacity and lack of resource, financial and otherwise. We don't need new and innovative services unless we have enough capacity to deliver services in the first place!! New and innovative isn't always the best - we need to look at what has worked in the past and build on it by investment. For example, the Sure Start project worked because it was invested in!!" (Lead Nurse, School Nursing, Banquo).
This issue of advocacy in relation to policy implementation, and the need for quality service provision often led to frustration. This will be explored further in Chapter 7.
Policies
6.34 The interpretation of government documents and related policies whereby information could be communicated meaningfully and/or accurately to service providers appeared to be a vital component of quality service provision. The policies most frequently mentioned by participants across the sites were Hall4, Getting it Right for Every Child ( GIRFEC), and the Additional Support for Learning Act ( ASL).
6.35 In relation to GIRFEC, several sites were carrying out integrated care assessments. However, one participant suggested that it was not being developed particularly swiftly,
" GIRFEC has sort of fizzled out … I went to a few meetings in Edinburgh on the consultation group … when they were developing it, and it sounded very generic, all children, and then it just seemed to go down this lane, and it's got stuck there" (Lead Officer, MacDuff).
6.36 Several respondents commented on the challenges of operationalising recommendations within the plethora of policies, one example being Delivering Healthy Futures, particularly with regard to continuing to provide services;
"It is a challenge to ensure that, as well as being driven by national issues ( GIRFEC, Care Close to Home Agenda), you actually respond to the needs of that given child." ( SLT Manager, Duncan)
6.37 Additionally, concerns were raised relating to the time lapse between implementing a policy, and seeing the ensuing outcomes;
" … not doing routine checks, so that concerns me. How do we pick up? And how early - only now, in the next couple of years will we be able to see the results of Hall 4, and whether interventions could have been done sooner, or children referred earlier" ( HV, Duncan).
6.38 Prioritising work in order to comply with policy was sometimes problematic.
"We have something called a Core programme - and we're struggling with it at the moment - HV, school nursing. The Core Programme, and Hall 4 is quite sufficient with all the resource we've got at the moment. So we're talking about additional. So how do you prioritise your priorities? In Banquo have Children's Services Strategic working groups - partnership, LA, education, health - it's very difficult to contribute to the prioritisation agenda within that group. That's the biggest challenge. Every discipline/sector has their own target to meet. Now, joint funding is a joke as a result" ( CHP, Banquo)
6.39 In MacDuff, with regard to Hall4, workload analysis of HV teams has shown that staff were much more active in higher deprivation category areas, and were targeting their activities and time much more towards those who need it. There were a significant number, nearly one third, of under fives who were receiving "additional" and "intensive" services, which included children with complex needs. This raised the need for the workforce to contextualise specific aspects of service delivery. These included location of service provision in relation to remote and rural areas, and level of availability of resources. Accessibility to, and acceptability of specific services, such as those in areas of deprivation, provided an ongoing challenge for practitioners.
6.40 Another issue was the frequency with which the workforce were required to implement policies, with staff having little clarity regarding operationalisation or time for assimilation, before the next change was upon them;
"Services spread so thinly, trying to accommodate every new Scottish Executive policy … that actually people recently have been burnt out. No clear guide about what the priorities are - too many" (Lead Nurse, Banquo).
6.41 Concerns were raised relating to the number of policy documents, the increasing constraints involved in implementing them while at the same time maintaining a service to the children and young people with complex needs. One manager commented;
"there is a big tension between policy implementation and the operational delivery of services. As with all the big drivers, we're being asked to do more and more with less and less … We have savings and efficiency targets, and year on year, most of my resource is tied up in staff, so we're not filling vacancies, money is going towards savings to meet the higher targets that come in centrally, and increasingly our services have become more and more targeted, particularly around Hall 4".
She went on to point out that
" … if a change of practice is being recommended, if no funding comes with that, it can be very challenging because you have to take it from somewhere else" (Manager, MacDuff).
6.42 Others highlighted competing requirements, and managing priorities;
"… I find it completely overwhelming, in that there is so much going on against the background of having to achieve efficiency savings, achieve waiting list targets, as well as delivering very high quality care - that would be my main priority - but that is difficult to do with all the other competing priorities. There are so many policy initiatives out just now that it is difficult to decide what you are going to take forward and not take forward. In some ways it's good, because there there's much more focus on the children … but it's what's manageable at the coalface" (Chief Nurse, Duncan).
"You feel you are drowning beneath all the policy and legislation coming out about children, and it is quite difficult to drip-feed that into the minds of the staff. But we are aware, and we take it on board and are actually quite proactive about trying to respond". (Physiotherapy Manager, Duncan).
6.43 This point was echoed by another manager;
"Well there are so many of them … We have challenges in extrapolating … the real relevance is how do we deliver … we have to keep reminding our staff it's not anything new, it's just a different way. …So I think one of the challenges is the timing of some of these coming out. I think joint overviews are going to be a bit of a help. We're responsible for extracting from the plethora some of the main themes. Every one I have picked up recently is about how we consult with children." ( SLT Manager, Macbeth)
6.44 Participants in one site noted 2 measures available in England which they thought could be usefully adopted in Scotland: ring-fenced money for the Every Disabled Child Matters campaign; and central government funding for short-term home based respite care for carers in crisis or emergency situations in every council.
The fact that ASL was law was seen to have advantages;
"When they move to school age, they've got ASL as a framework to move into, and the two [early intervention and ASL] fit into each other. Early days for ASL going in right direction, though ASL Act maybe not as robust as people thought it was going to be" (Paediatric physiotherapist, Banquo),
and disadvantages;
" … the introduction of the ASL Act - that's been a thorn in our side as well because they keep saying to us, well we've got the legislation - this, this, and this must be done" (Lead Officer, MacDuff).
6.45 In this case, the frustration seemed mainly to stem from the fact that the coordinated support plan, required by the ASL Act for children with long-term multiple and complex needs, focused on the child's educational needs within the school setting, and did not address the family or the environment, which was a major component of the nursing and allied health professionals' remit.
6.46 At the time of this project, the implementation of the Community Health Nursing Review was underway, and elicited mixed views from participants, ranging from apprehension, constructive criticism and anticipation. Two sites in this study, Duncan and MacDuff, were development sites for the implementation of the findings from the review. One manager felt that it was a rushed piece of work, but was something they were going to have to live with. With regard to being able to anticipate how it might affect their own service provision, managers were not clear:
"… the difficulty is none of us can fully understand what the model is going to look like, and what it's going to look like … for children with complex needs" (Manager, Duncan).
6.47 Another commented that there was no mention of either the CCN or public health nurse roles, and expressed concern about who would support families with children with complex needs in the future. Currently, it was often difficult to gain the support of DNs for families as they generally did not have paediatric qualification or experience.
6.48 One participant was concerned that children were not highlighted, and felt that despite her colleagues having contributed to the consultation process, their views had not been taken on board.
"I've seen the job description of the CHN - I think there's one mention of child in the whole 10 page document. A lot of us in the hospital gave comments back on the review, and when the final thing came out, there wasn't any change. It seems to be your comments aren't really listened to" ( CCN, Banquo).
6.49 The current climate was deemed to be challenging for managers as the nursing profession awaited a redesigning or refining of service provision within the community, the Community Health Nursing Review, and the consequential impact it will have on AHPs. There was a degree of uncertainty with regard to what it would actually mean in practice.
"…I think it's fair to say, in general, there is an anxiety, and the resistance … is about anxiety and fear, lack of skills and the implications of all of this … what support structures are there going to be across the piece? (Service Manager, MacDuff).
6.50 However, one participant felt that the Review could have benefits, in that it would highlight that there are children in the community (especially those with complex needs) who are part of a family unit who may require care from the 'cradle to the grave' (Senior Nurse, Banquo).
Adherence to clinical governance
6.51 Managers within all regions cited several examples of ways in which clinical governance was communicated to staff, and was being upheld. It was felt that clinical governance and standards of care had received a much higher focus over the past 18 months, and this was welcomed. Both MacDuff and Duncan mentioned various audits being conducted, such as observation audits, patient satisfaction audits, audits of clinical care and around record keeping, thus providing them with quality indicators of the service.
6.52 Respondents to the questionnaire mentioned a variety of means that were available to support their adherence to clinical governance. Clinical effectiveness/governance teams were listed most frequently (a Nurse Manager in Macbeth mentioned a child health clinical governance group specifically), followed by Risk Assessment/Risk Management, supervision, CPD/ PDP, Policy/procedures/, Protocols/Departmental Guidelines, audits, Patient Group Directions, Quality Improvement team, and a Specialist Nurse Forum. Practitioners referred to various opportunities, and mentioned more than one method of communicating information:
" … follow policy /procedures for clinical practice. Audit of various areas. Specialist nurse forum - peer review. Risk assessment where required i.e. covers working with a ventilated child" ( CCN, Banquo).
6.53 Over half of respondents had encountered barriers to adhering to clinical governance. Finding time was the most frequently mentioned barrier, along with money to develop services in line with evidence based practice. Other barriers mentioned frequently related to staffing numbers and workload. A Lead Nurse School Nursing (Banquo) reported that one problem was the lack of capacity, for example, one city, with a CYP population of 23,000 was supported by 11.23 whole time equivalent school nurses. A clinical nurse manager in Duncan mentioned lone working, recruitment and retention difficulties, and access to IT as factors related to quality assurance standards.
6.54 Staff were not always confident regarding their level of current knowledge in relation to policies and best practice statements. This was thought to impact on and could be a potential barrier in adhering to clinical governance. One physiotherapist in Macbeth felt that there were different policies within health and education, while a Nurse Manager in the same region found that consultants did not always agree with guidelines, best practice statements etc. Both Nurses and AHPs commented on the absence of robust evidence to encourage change of practice and the lack of evidence to support specific interventions.
Key Points
- Children and young people with complex needs commonly had contact with a very wide range of practitioners of one sort or another. Unless managed carefully, this could lead to a considerable degree of duplication in terms of record keeping. This had the potential to be inefficient and time consuming, and create potential risk in terms of safe case management. One way of addressing this issue was the use of joint record keeping within and across services. Although respondents were aware of this, joint assessment protocols and record sharing was still in its infancy.
- Geographical challenges continued to present themselves in terms of information sharing and joint working. Although these should be relatively easy to overcome using electronic means, the development of trusting relationships between staff were as important as the methods of communications themselves.
- Concern was expressed about communication between management and practitioners delivering services. This was probably inevitable but was exacerbated by the need for open channels of communication across the sector.
- Communication with parents and children and young people was recognised as important in policy documents but proved difficult to implement. Although most respondents expressed an awareness of the benefit of person centred service delivery, there was less clarity as to how this could realistically be achieved.
- One route was advocacy from the voluntary sector such as Children in Scotland but there remained issues around the level of information available for this type of support.
- Policy documents related to service delivery were a key feature of any communication strategies. There was considerable recognition of the value of specific pieces of legislation. The flip side of this was the volume and rapid succession of such initiatives, and the risks these posed in overwhelming those attempting to deliver services.
- The pressure to adapt and remodel services affected the way they were delivered. This in turn put pressure on clinical governance, with practitioners feeling that they had difficulties in meeting targets that were constantly changing.