Evidence review of views and experiences of service providers

Introduction

This review will examine the views and experiences of commissioners, providers and practitioners of joined-up care between health, social care and education services for disabled children and young people with severe complex needs. This will be used to identity themes about the acceptability and accessibility of joined up services. The qualitative evidence from this review will be combined with quantitative evidence from other systematic reviews on effective joint commissioning, integration and joint working between practitioners across health, social care and education services to identify the optimal delivery of joined-up care.

At the time of scoping and developing the review protocols, documents referred to health, social care and education in accordance with NICE style. When discussing the evidence and making recommendations, these services will be referred to in the order of education, health and social care for consistency with education, health and care plans.

Summary of the protocol

See Table 1 for a summary of the population, phenomenon of interest and context characteristics of this review.

Table 1

Summary of the protocol.

For further details see the review protocol in appendix A.

Methods and process

This evidence review was developed using the methods and process described in Developing NICE guidelines: the manual. Methods specific to this review question are described in the review protocol in appendix A and the methods document (Supplement A).

Declarations of interest were recorded according to NICE’s conflicts of interest policy.

Qualitative evidence

Summary of studies included in the qualitative evidence

Summaries of the studies that were included in this review are presented in Table 2.

Table 2

Summary of included studies.

See the full evidence tables in appendix D. No meta-analysis was conducted (and so there are no forest plots in appendix E).

The following themes were identified through analysis of the included studies:

• Child/young person centred approach
• Involvement of children and young people
• Involvement of families and carers
• Relationships between service providers and service users
• Information and support
• Service provider knowledge and training
• Experience of EHC plans
• Improved transition
• Short breaks and respite breaks provide benefit

The data from the included studies were synthesised and explored in a number of central themes and sub-themes (central themes shown in Error! Reference source not found.; see appendix L for sub-theme maps).

Figure 1

Theme map.

1.1.1.3. Included studies

A systematic review of the economic literature was conducted but no economic studies were identified which were applicable to this review question. A single economic search was undertaken for all topics included in the scope of this guideline. See Supplement B for details.

1.1.1.4. Excluded studies

Studies not included in this review are listed, and reasons for their exclusion are provided in appendix J.

1.1.1.5. Economic

No economic studies were identified which were applicable to this review question.

1.1.1.6. The outcomes that matter most

The review focussed on the views and experiences of commissioners, providers and practitioners of joined-up care between health, social care and education services for disabled children and young people with severe complex needs. The committee did not pre-specify themes as they did not want to constrain the evidence, however they identified a number of potential themes as illustrative of the main themes to guide the review. The potential themes were not exhaustive and an emergent approach was taken to the thematic analysis. The committee focused their discussion only on themes that emerged from the evidence; the potential themes were not discussed by the committee when developing recommendations.

1.1.1.7. The quality of the evidence

The evidence was assessed using GRADE-CERQual methodology and the overall quality ranged from very low to high. Concerns about the methodological limitations of the primary studies were assessed with the CASP checklist and ranged from “major” to “none or very minor”. The most common issues were lack of consideration of the relationship between researcher and participants, somewhat limited detail provided on data analysis, no justification for the data collection methods and setting, lack of information about recruitment and potential for recruitment bias and an absence of a clear statement of findings. Concerns about coherence ranged from “moderate” to “none or very minor”. For all but one of the review findings, concerns were “none or very minor”, as there was no ambiguous data nor data that contradicted the findings. For the remaining finding, most of the evidence was contradictory. Concerns about relevance were “none or very minor” for all of the review findings. This is because no evidence from a substantially different context as the review question was included in the review. Concerns about adequacy ranged from “major” to “none or very minor”. There were major concerns where the evidence did not offer rich data, moderate concerns where the evidence offered some rich data, and minor concerns when the evidence offered moderately rich data. The number of studies used for each review finding ranged from 1 to 7.

The quality of the review findings is summarised here according to the over-arching themes and sub-themes:

1.1.1.8. Benefits and harms

Where the qualitative evidence integrates with quantitative evidence, links are discussed in the associated quantitative reviews. This discussion covers qualitative evidence only. There was moderate quality evidence from sub-theme 1.3 that service providers are falling short of using a child or young person centred approach and are not adequately capturing the child or young person’s perspective; and from sub-theme 6.2 that there was a lack of available training in how to adapt communication and make better use of communication aids for children and young people with communication difficulties and that multi-agency work was required to improve this. The committee agreed that providing practitioners with training would help to address the issues identified by the evidence. The committee felt strongly that it would be more effective and cost effective for services to work together to develop training in these areas, and for multi-agency training to be delivered as this provides the opportunity to learn from other services about their roles and responsibilities, helps to build positive working relationships and a shared understand of children and young people’s needs [1.15.17]. Further, there was moderate quality evidence, from sub-theme 1.4 that children and young people’s potential may be underestimated and that good EHC plans should recognise their aspirations and think about long term options. This was supported by the committee’s understanding of the SEND Code of Practice (2015) which highlights the importance of supporting children and young people to achieve their ambitions. Therefore, the committee recommended that views, life goals and ambitions should be focused on during planning and decision making [1.1.1; 1.4.1] and that these should be reviewed to ensure they are relevant and will support the child or young person to reach their full potential [1.4.16]. The committee agreed, based on their experience, that cultural backgrounds and preferences can impact on the views, life goals and ambitions of individuals and so recommended that practitioners also take this into account [1.1.1]. The also committee recognised, based on their experience, that those children and young people with the most complex needs may not be able to actively participate in planning or decision making. They recommended that the views of those who know the child or young person best are also taken into account to ensure that the perspective of the child or young person is fully represented [1.1.2]. This would be particularly relevant to those with profound and multiple learning disabilities and severe cognitive impairments.

The committee discussed that options for disabled children and young people after compulsory education are not limited to further education, and that there are options such as supported internships that children, young people and their families may not be aware of. Therefore, the committee agreed it was important that all options are discussed with the child or young person and their families in sufficient detail to allow for informed decision making and for children and young people to formulate long-term goals and outcomes [1.8.3]. The committee recommended that professionals raise queries with each other if they think professionals’ expectations for the child or young person are unrealistic [1.4.5].

Evidence from the evidence report K (theme 16) highlighted that key workers are seen as important for having a holistic view of the child or young person and coordinating services. However, very low quality evidence from sub-theme 4.3 highlighted that families are less accepting of key workers who have not had much involvement with the family. Therefore, the committee recommended that the person providing key working support is part of the interagency team and is someone who the child or young person is comfortable with and who knows them and their needs well. The committee also agreed that it would be beneficial if the person providing key working support is from the service where the child or young person has the most needs as they will have better knowledge of how to navigate the system. Therefore, the committee included this within the recommendation [1.15.5]. This aligns with providing emotional and practical support as part of a trusting relationship, one of the main functions of key working support specified in the SEND Code of Practice (2015).

There was high quality evidence from sub-themes 4.1 and 5.1 that more information and support was needed throughout the EHC plan process, and that sometimes it was necessary to manage parents and carers’ expectations regarding the outcomes of EHC plans and what they may help with. This evidence was supported by evidence report A, sub-theme 2.1 and evidence report K, sub-theme 9.6. Therefore, the committee agreed it was important to discuss expectations with children and young people and their parents and carers and explain the purpose and process of EHC needs assessment and EHC plans, including how they can be involved, how their views will be incorporated, which services will be involved and what will happen if an EHC plan is not issued [1.3.5].

Although recording the views of children and young people in EHC plans is mandatory, there was moderate quality evidence from sub-theme 1.1 and 2.2 that this is not always done adequately. This aligned with the experience of the committee and so they supported recording children and young people’s views in EHC plans [1.4.8] and recommended that children and young people are encouraged to give their views and be involved in decisions where possible [1.1.6; 1.1.8]. Recording the views of the child or young person in EHC plans and being clear about which parts are their contributions would be particularly relevant for those with cognitive impairments and communication needs and disorders. They also recommended, based on moderate quality evidence from sub-theme 1.5, that parents, carers and advocates think about how they can support the child or young person to do this and how services can help [1.1.10]. Helping children and young people to understand their options and to prepare for meetings was thought to help them to communicate their views during meetings and, therefore, the committee made recommendations in support of this based on the evidence in sub-theme 2.4 and evidence report A, sub-theme 8.2 [1.1.29]. This was thought to be particularly important for children and young people who use communication aids, as they may prefer to prepare a script in advance of the meeting to enable them to communicate their views more easily. Further, children with cognitive impairments and learning disabilities will benefit from additional lead in time to process information and consider their views. Those with poor literacy will also benefit from having time to prepare for meetings and discussions. This aligns with the requirements in the Children and Families Act 2014 about supporting children, young people and parents to participate in decisions. In addition, the committee’s understanding of the SEND code of practice is that it recommends including time to prepare for discussions and meetings.

There was moderate quality evidence from sub-theme 2.2 that children and young people’s views are not always captured accurately and that it was important to make sure views are not rewritten in a way that changes the meaning. Therefore, the committee recommended that they are recorded using the child or young person’s own words, or equivalent form of communication for children who do not communicate verbally [1.4.13]. This would be particularly important for those with communication needs or disorders and sensory impairments. The low quality evidence from sub-theme 2.4 also highlighted the importance of having a flexible approach to collecting views that took into account the child or young person’s age, developmental level and communication skills and the difficulty of capturing the views of children and young people with cognitive impairments and severe communication difficulties. Therefore, the committee recommended that practitioners should take this flexible approach [1.1.16]. This may require finding out what communication formats and media children and young people prefer so that this format can be used when communicating with them; therefore, the committee made a recommendation in support of this [1.1.17]. This recommendation would be particularly relevant to those with cognitive impairments, communication needs and disorders and sensory impairments There was some moderate quality evidence from sub-theme 2.5 that using accessible language in EHC plans would increase the involvement of children and young people and improve accountability. The committee noted that certain sections of the plan would need to be written in technical language (for example information about health), however the sections about outcomes and support provision needed to be understandable to the child or young person (which would be particularly relevant for those with communication difficulties and poor literacy) [1.4.14]. Further, they recommended that practitioners check with the child or young person if the plan makes sense to them, that they can understand the plan outcomes and that they agree with the content [1.4.15]. The committee acknowledged that it may be difficult to do this for some children and young people but recommended that this is done to the extent that is possible. In the committee’s understanding, these recommendations align with the principles and requirements on preparation of EHC plans in the SEND Code of Practice (2015), which state that “EHC plans should be clear, concise, understandable and accessible to parents, children, young people, providers and practitioners. They should be written so they can be understood by professionals in any local authority.”

There was moderate quality evidence from sub-theme 1.6 highlighting the importance of respecting children and young people’s rights to privacy and to be involved in decisions. Additionally, there was moderate quality evidence from sub-theme 4.5 that attending meetings with large numbers of professionals can be intimidating. Therefore, the committee agreed it was important to hold meetings in private and not invite more people than necessary to meetings [1.1.34]. The committee were of the view that the experiences of children at a peer level are different to those of practitioners who are providing care for disabled children and young people with severe complex needs. Getting this peer level perspective, extends the understanding of the practitioners providing care and can also demonstrate strengths and interests of the child or young person that practitioners will not have observed due to the different dynamic of the relationship. This enables a broader view of what the child or young person is capable of so practitioners can make better judgements about their future abilities and adjust outcomes accordingly. Based on this the committee agreed that children and young people having the opportunity to invite siblings or friends to share their views on the disabled child/young persons’ strengths and interests would be of value [1.1.43].

There was some moderate quality evidence from sub-theme 5.2 that needing to repeat information is difficult, especially when discussing sensitive information and that sharing information would reduce the need to repeat information. This was consistent with evidence from the other qualitative reviews that repeating information is exhausting and produces negative feelings (see evidence report A, sub-theme 4.1), information sharing is not sufficient (see evidence report K, sub-theme 7.1) and increasing information sharing would streamline processes (see evidence report K, sub-theme 7.2). This aligns with the approach advocated in the SEND Code of Practice (2015) in relation to sharing information during the EHC needs assessment and planning process, so that children and young people and their families do not have to repeat the same information. Therefore, the committee made a recommendation in support of sharing information [1.1.54]. Given the evidence above about privacy and in light of data protection regulations, the committee agreed it was important to ask for and record informed consent before sharing information, and ask children and young people and their parents and carers if there is any information that they do not want to be shared and the implications of doing this. Equally it was important to explain what information will be shared without their consent, for example in relation to safeguarding. They also recognised that some practitioners may have closer relationships with the family than others so agreed it was important that children and young people and their parents and carers are asked who they would prefer to discuss sensitive information with [1.1.51]. The committee also agreed that organisational policies on consent and relevant legislation and statutory guidance would need to be followed [1.1.52; 1.1.53]. Finally, the committee agreed it was important that children, young people and their families are asked about their information sharing preferences regularly, for example at EHC plan reviews, as changes in family circumstances may affect who information should be shared with [1.1.57].

There was very moderate quality evidence from sub-theme 1.2 that using a consistent approach when interacting with children and young people was beneficial, in terms of being more predictable and helping them to generalise across different settings. This aligned with the experience of the committee that interacting in a consistent way helps children and young people know what to expect and feel more safe and confident in their interactions with services, so they made a recommendation in support of this [1.1.44]. Further, they recommended that handovers are arranged when there is a change in practitioners working with children and young people to avoid disruptions in care and the need for children and young people or their parents and carers to repeat information [1.14.2]. The committee made a recommendation based on their experience, supporting joint working between services before an EHC plan is issued [1.3.10] as they agreed it was important that joint working begins as soon as it has been recognised that a child has severe complex needs to ensure they get the support they need and ease the transition to an EHC plan.

The committee’s understanding of the SEND code of practice and legislation in the Children and Families Act 2014 is that parents and carers must be consulted throughout the EHC plan process. However, the evidence from sub-theme 3.2 suggested that sometimes this is limited and only done in a tokenistic way. There was also evidence in evidence report A (sub-themes 9.1 and 9.2) supporting that parents and carers felt positively when given the opportunity to provide their views, and conversely expressed negative feelings when their views were ignored. Based on this, the committee made a recommendation in support of their involvement throughout the assessment, production and review of EHC plans [1.4.2].

The committee discussed that, based on their experience, there are occasions when parents or carers may decline an EHC plan. For example, if they are unhappy with the educational provision specified in a plan they may decline the plan as accepting it would mean they were legally obligated to send their child to the specified provision. The committee agreed that in these circumstances it is important to still engage with parents and carers so that their children do not become lost to services. The committee recommended discussing reasons for declining a plan and addressing any concerns, discussing the potential implications of deciding not to have an EHC plan, and agreeing what ongoing support will be provided with the parents or carers to ensure that the best possible support can be provided for the child or young person, within the constraints of not having an EHC plan or the funding that is attached to this. Discussing the reasons for declining the plan would be particularly relevant where stigma or different cultural views may be impacting on the decision. The committee also agreed that parents and carers need to be made aware of how to request an EHC needs assessment in future, in case their circumstances or views change. Finally, the committee agreed it was important to consider if declining a plan may cause a safeguarding issue, and follow local safeguarding processes if needed [1.4.23].

There were a number of sub-themes where the committee did not make a recommendation based on the qualitative evidence alone. For one sub-theme (sub-theme 6.1), a recommendation was not made because the evidence from the sub-theme was consistent with a recommendation from another review question (recommendation 1.14.3, see evidence report C) and, therefore, the evidence was used as further support for that recommendation. In contrast, for one sub-theme (sub-theme 3.3), recommendations were not made because the evidence (that families could probably provide more care and be less reliant on services) contradicted other themes where there was stronger evidence, such as sub-theme 3.2 in evidence report K which showed it can be hard for parents to take on care planning and decision making). For other themes, the committee agreed that the issue raised by the evidence would be reduced as a result of recommendations made elsewhere in the guideline (sub-themes 4.2 and 9.3), or the evidence available was not sufficient to support a recommendation because it was moderate quality evidence for an intervention or service that would potentially have a large resource impact (sub-theme 9.1), did not provide enough information about how to address the issue raised by the evidence (sub-themes 4.4 and 9.2), or was very specific and the committee were unsure of its relevance to the wider population covered by the guideline (sub-theme 2.3). Finally, there were some themes (sub-themes 3.1, 7.1, 7.2, 7.3 and 8.1) commenting on the perceived impact of EHC plans or extending the SEND service provision up to age 25. These are now statutory requirements and so it was outside the remit of this guideline to make recommendations in these areas.

1.1.1.9. Cost effectiveness and resource use

No existing economic evidence was identified for this review and no economic analysis was undertaken.

There may be some resource implications associated with making processes more consistent and transparent across education, health and social care services. However, this will potentially lead to more efficient and coordinated practices across the sectors, resulting in cost savings. Such an approach will also have benefits to children and young people and their parents and carers. For example, having meetings in the same venue will make it more accessible to children and young people; having more joint/coordinated meetings will mean services use staff time efficiently.

The committee noted that currently services are required to develop suitable and sufficient training for their workforce, but this is done within individual services and not usually across sectors. Therefore, education, health and social care services working together to develop joint training will be a change in practice, but this is unlikely to have additional resource implications because the training specified in the recommendation exists in at least one of the sectors already. The committee also highlighted that by developing joint training, it could enable practitioners from some sectors to receive training which they may not have done under a siloed way of working, as it was not deemed necessary for their role. Such an approach may also help build positive working relationships and a shared understanding of children and young people’s needs and ultimately result in better and more timely care and improved outcomes for children and young people with disabilities and severe complex needs, i.e. quality-adjusted life year gains. The committee also noted that if all three sectors organised joint interagency training, it would result in efficiencies and cost savings to all three sectors.

The committee also discussed that needing to repeat information is difficult for children and young people and their parents and carers, especially when talking about sensitive issues. Sharing information would reduce the need to repeat information, make processes more efficient, cut out duplication and make better use of staff time. The committee explained that there might be some resource implications associated with establishing processes to share information. However, cost savings due to more efficient processes and people having the correct information at the right time will result in better care and outcomes and will outweigh any cost increases. In addition, removing the need for children and young people and their families and carers to repeat information is in line with the committee’s understanding of the SEND Code of Practice (2015).

The committee discussed that more staff time might be required to implement some recommendations, for example consulting with and involving children and young people and their parents and carers to get their views and help them prepare for meetings. However, for most services, these recommendations represent current practice so would only have modest resource implications, if any, which are justifiable as such care is likely to lead to improvements in children’s and young people’s experience of care and quality of life and aligns with legislation and statutory guidance.

1.1.1.10. Other factors the committee took into account

The committee were aware of areas of legislation that are not being consistently followed in practice, specifically, whether or not commissioners engage and consult with children and young people and their parents and carers when commissioning services [RQ11.2; Consensus A] and how they ensure their participation is effective [RQ3.1D; RQ 11.2; sub-theme 1.5]. Therefore, the committee made recommendations in support of these actions. This is further supported by evidence report K which showed gaps in service provision.

Recommendations supported by this evidence review

This evidence review supports recommendations 1.1.1, 1.1.2, 1.1.6, 1.1.8, 1.1.10, 1.1.16, 1.1.17, 1.1.29, 1.1.34, 1.1.43, 1.1.44, 1.1.51 – 1.1.54, 1.1.57, 1.3.5, 1.3.10, 1.4.1, 1.4.2, 1.4.5, 1.4.8, 1.4.13 – 1.4.16, 1.4.23, 1.8.3, 1.14.2, 1.15.5, 1.15.17. Other evidence supporting these recommendations can be found in the evidence reviews on Views and experiences of service users (evidence report A), Barriers and facilitators of joined-up care (evidence report K).

Review protocol for review question: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

Table 3. Review protocol (PDF, 203K)

Literature search strategies for review question: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

Study selection for: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

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Evidence tables for review question: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

Download PDF (490K)

Forest plots for review question: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

No meta-analysis was conducted for this review question and so there are no forest plots.

GRADE CERQual tables for review question: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

Table 5. Evidence profile: Theme 1. Child/young person centred approach (PDF, 207K)

Table 6. Evidence profile: Theme 2. Involvement of children and young people (PDF, 201K)

Table 7. Evidence profile: Theme 3. Involvement of families and carers (PDF, 204K)

Table 8. Evidence profile: Theme 4. Relationships between service providers and service users (PDF, 368K)

Table 9. Evidence profile: Theme 5. Information and support (PDF, 134K)

Table 10. Evidence profile: Theme 6. Service provider knowledge and training (PDF, 134K)

Table 11. Evidence profile: Theme 7. Experience of EHC plans (PDF, 193K)

Table 12. Evidence profile: Theme 8. Improved transition (PDF, 140K)

Table 13. Evidence profile: Theme 9. Short breaks and respite breaks provide benefit (PDF, 192K)

Economic evidence study selection for review question: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

One global search was undertaken – please see Supplement B for details on study selection.

Economic evidence tables for review question: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

No evidence was identified which was applicable to this review question.

Economic model for review question: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

No economic analysis was conducted for this review question.

Excluded studies for review question: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

Research recommendations for review question: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

No research recommendations were made for this review question.

Qualitative thematic maps for review question: What is the experience of commissioners, providers and practitioners of joint working of health, social care and education services for disabled children and young people with severe complex needs?

Figure 3. Sub-theme map for child/young person centred approach (PDF, 135K)

Figure 4. Sub-theme map for involvement of children and young people (PDF, 140K)

Figure 5. Sub-theme map for involvement of families and carers (PDF, 108K)

Figure 6. Sub-theme map for relationships between service providers and services users (PDF, 135K)

Figure 7. Sub-theme map for information and support (PDF, 92K)

Figure 8. Sub-theme map for service provider knowledge and training (PDF, 96K)

Figure 9. Sub-theme map for experience of EHC plans (PDF, 108K)

Figure 10. Sub-theme map for improved transition (PDF, 76K)

Figure 11. Sub-theme map for short breaks and respite breaks provide benefit (PDF, 109K)