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class="bkr_bib"><h1 id="_NBK579713_"><span itemprop="name">Evidence review for involving children and young people</span></h1><div class="subtitle">Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care</div><p><b>Evidence review B</b></p><p><i>NICE Guideline, No. 213</i></p><p class="contrib-group"><h4>Authors</h4><span itemprop="author">National Guideline Alliance (UK)</span>.</p><div class="half_rhythm">London: <a href="https://www.nice.org.uk" ref="pagearea=meta&targetsite=external&targetcat=link&targettype=publisher"><span itemprop="publisher">National Institute for Health and Care Excellence (NICE)</span></a>; <span itemprop="datePublished">2022 Mar</span>.<div class="small">ISBN-13: <span itemprop="isbn">978-1-4731-4460-6</span></div></div><div><a href="/books/about/copyright/">Copyright</a> © NICE 2022.</div></div><div class="bkr_clear"></div></div><div id="niceng213er2.s1"><h2 id="_niceng213er2_s1_">Involving children and young people</h2><p>
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<b>Recommendations supported by this evidence review</b>
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</p><p>This evidence review supports recommendations 1.1.3 – 1.1.6, 1.1.8 – 1.1.10, 1.1.11, 1.1.17 – 1.1.20, 1.1.23, 1.1.29 – 1.1.33, 1.1.35, 1.1.36, 1.1.38, 1.1.41, 1.1.46 – 1.1.50, 1.4.6, 1.4.7, 1.4.14, 1.4.15 and the research recommendation on telehealth and virtual platforms. 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), Views and experiences of service providers (evidence report M).</p><div id="niceng213er2.s1.1"><h3>Review question</h3><p>What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</p><div id="niceng213er2.s1.1.1"><h4>Introduction</h4><p>This review aims to identify effective practices to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education.</p><p>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 (EHC) plans.</p></div><div id="niceng213er2.s1.1.2"><h4>Summary of the protocol</h4><p>See <a class="figpopup" href="/books/NBK579713/table/niceng213er2.tab1/?report=objectonly" target="object" rid-figpopup="figniceng213er2tab1" rid-ob="figobniceng213er2tab1">Table 1</a> for a summary of the Population, Intervention, Comparison and Outcome (PICO) characteristics of this review.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng213er2tab1"><a href="/books/NBK579713/table/niceng213er2.tab1/?report=objectonly" target="object" title="Table 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng213er2tab1" rid-ob="figobniceng213er2tab1"><img class="small-thumb" src="/books/NBK579713/table/niceng213er2.tab1/?report=thumb" src-large="/books/NBK579713/table/niceng213er2.tab1/?report=previmg" alt="Table 1. Summary of the protocol (PICO table)." /></a><div class="icnblk_cntnt"><h4 id="niceng213er2.tab1"><a href="/books/NBK579713/table/niceng213er2.tab1/?report=objectonly" target="object" rid-ob="figobniceng213er2tab1">Table 1</a></h4><p class="float-caption no_bottom_margin">Summary of the protocol (PICO table). </p></div></div><p>For further details see the review protocol in <a href="#niceng213er2.appa">appendix A</a>.</p></div><div id="niceng213er2.s1.1.3"><h4>Methods and processes</h4><p>This evidence review was developed using the methods and process described in <a href="https://www.nice.org.uk/process/pmg20/chapter/introduction-and-overview" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Developing NICE guidelines: the manual</a>. Methods specific to this review question are described in the review protocol in <a href="#niceng213er2.appa">appendix A</a> and the methods document (<a href="/books/NBK579713/bin/niceng213er2_bm1.pdf">Supplement A</a>).</p><p>Declarations of interest were recorded according to <a href="https://www.nice.org.uk/about/who-we-are/policies-and-procedures" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">NICE’s conflicts of interest policy</a>.</p></div><div id="niceng213er2.s1.1.4"><h4>Effectiveness evidence</h4><div id="niceng213er2.s1.1.4.1"><h5>Included studies</h5><p>A systematic review of the literature was conducted but no studies were identified which were applicable to this review question.</p><p>See the literature search strategy in <a href="#niceng213er2.appb">appendix B</a> and study selection flow chart in <a href="#niceng213er2.appc">appendix C</a>.</p></div><div id="niceng213er2.s1.1.4.2"><h5>Excluded studies</h5><p>Studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng213er2.appj">appendix J</a>.</p></div></div><div id="niceng213er2.s1.1.5"><h4>Summary of studies in the effectiveness evidence</h4><p>No studies were identified which were applicable to this review question (and so there are no evidence tables in <a href="#niceng213er2.appd">Appendix D</a>). No meta-analysis was undertaken for this review (and so there are no forest plots in <a href="#niceng213er2.appe">Appendix E</a>).</p><p>No studies were identified which were applicable to this review question (and so there are no GRADE tables in <a href="#niceng213er2.appf">appendix F</a>).</p></div><div id="niceng213er2.s1.1.6"><h4>Economic evidence</h4><div id="niceng213er2.s1.1.6.1"><h5>Included studies</h5><p>A systematic review of the economic literature was conducted but no economic studies were identified which were applicable to this review question.</p><p>A single economic search was undertaken for all topics included in the scope of this guideline. See <a href="/books/NBK579713/bin/niceng213er2_bm2.pdf">Supplement B</a> for details.</p></div><div id="niceng213er2.s1.1.6.2"><h5>Excluded studies</h5><p>Economic studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng213er2.appj">appendix J</a>.</p></div></div><div id="niceng213er2.s1.1.7"><h4>Summary of included economic evidence</h4><p>No economic studies were identified which were applicable to this review question.</p></div><div id="niceng213er2.s1.1.8"><h4>Economic model</h4><p>No economic modelling was undertaken for this review because the committee agreed that other topics were higher priorities for economic evaluation.</p></div><div id="niceng213er2.s1.1.9"><h4>Evidence statements</h4><div id="niceng213er2.s1.1.9.1"><h5>Economic</h5><p>No economic studies were identified which were applicable to this review question.</p></div></div><div id="niceng213er2.s1.1.10"><h4>The committee's discussion and interpretation of the evidence</h4><div id="niceng213er2.s1.1.10.1"><h5>The outcomes that matter most</h5><p>Understanding of own health, social care and education needs and involvement of child or young person in planning and reviewing health, social care and education were prioritised as critical outcomes by the committee as identifying how health, social care and education services can work together to enable these factors was the objective of this review question. Child or young person’s satisfaction with health, social care and education services was selected as a critical outcome due to the importance of providing person-centred services.</p><p>The extent to which health, social care and educational needs are met was selected as an important outcome because of the potentially long-term impact on children and young people and their families if needs are not met. Delays in health care, social care and/or education was also selected as an important outcome to investigate the possibility that greater involvement of children and young people could cause delays.</p><p>No evidence was found for any of the outcomes.</p></div><div id="niceng213er2.s1.1.10.2"><h5>The quality of the evidence</h5><p>No studies were identified which were applicable to this review question.</p></div></div><div id="niceng213er2.s1.1.11"><h4>Benefits and harms</h4><p>There was evidence from the qualitative reviews that using a child/young person centred approach is valued, but that providers are falling short of achieving this (see evidence report M, sub-themes 1.1 and 1.3), that children and young people felt positively and grew in confidence when they were involved (see evidence report A, sub-themes 8.1 and 8.2) and that input from the child or young person was thought to lead to a more accurate reflection of their support needs (see evidence report A, sub-theme 8.3). Therefore, the committee agreed it was important to make a recommendation in support of involving children and young people in discussions and decisions about their care and support [1.1.4]. This was further supported by qualitative evidence about the importance of separating the views of children and young people from the views of their parents [see evidence report M, sub-theme 1.5) and aligns with the requirement in the Children and Families Act 2014 to provide the information and support that is necessary to enable children, young people and parents to participate in decisions. In the committee’s experience, children and young people are not represented at a number of meetings where they should be represented and often if they attend the meeting they are not actively included. The committee acknowledged that attending meetings might be difficult for some children and young people, but that the goal should be that if they wish to attend the meeting, they are actively included and, therefore, made a recommendation in support of this. The committee also noted that if the child or young person did not want to, or was unable to, attend meetings, it was still important to get their input via other accessible options and reflected this in the recommendation [1.1.4]. This would be particularly relevant to those who may find participating in meetings overwhelming or distressing and also for those families on low income who may have difficulties accessing online options. The committee agreed that keeping a record of how the child or young person participated in discussions and decisions about their education, health and care support and what contribution they made would help to ensure these recommendations were implemented [1.1.5]. Recommendations made in the planning and running meetings section of the guideline should improve the experience of attending meetings for children and young people. They also recommended that children and young people are given information in advance about meetings they will be involved in so that they have time to process this information and prepare [1.1.29]. Based on their experience, the committee agreed it was important to consider which members of the child or young persons’ family should be involved to account for situations of family breakdown [1.1.6].</p><p>The committee agreed, based on their experience, that awareness and understanding of person-centred approaches is variable and subjective. This was supported by qualitative evidence that service providers are falling short of using a child or young person-centred approach (see evidence report M, sub-theme 1.3). The committee were aware of person-centred planning tools that can assist with structuring and conducting meetings in a person-centred way. In their view these tools can be used to ensure that information about the child or young persons’ needs and wishes that is unique, relevant and important to them, is elicited at the start of planning. This removes the risk of generic assumptions, misinterpretations and prejudicial attitudes being placed onto the child or young person by practitioners, as a result of their condition. Using these planning tools to facilitate a person-centred approach also focusses on what the child or young person’s desired outcomes are and develops a plan to deliver these. In the committee’s experience if this is not done a plan can be developed that is easily deliverable within existing service arrangements but will not necessarily deliver the outcomes that are relevant to the individual. Therefore, they recommended that such tools are used as they will reduce variation in practice and ensure the approach used is person-centred. Using a person-centred approach is specified in the SEND code of practice as a way to ensure that children, young people and parents are involved in all aspects of planning and decision-making in the EHC needs assessment and planning process [1.1.35]. The committee agreed it was also important to check with children and young people if they are satisfied with how they have been involved in decisions and that practitioners look for ways to address concerns if children and you people are not satisfied, so that involvement is beneficial to children and young people and not just tokenistic [1.1.11]. The committee also agreed that it was important to encourage and support children and young people to give their views on their care, education and support and express what they want and need [1.1.8] based on the qualitative evidence outlined above (see evidence report A, sub-themes 8.1, 8.2 and 8.3; evidence report M, sub-themes 1.1 and 1.5) and additional evidence that their views are not always adequately captured in EHC plans (see evidence report M, subtheme 2.2). In the committee’s experience, specialist support may be required for children and young people to be able to do this and to participate in discussions and decisions [1.1.9]. This would be particularly relevant to those with communication needs and disorders. They also recommended that parents think about how they can support the child or young person to do this and how services can help in light of the qualitative evidence about the importance of separating the views of children and young people from their parent’s views [1.1.10].</p><p>There was evidence from the qualitative reviews (see evidence report A, sub-themes 1.6, 4.2 and 6.3 and evidence report K, sub-themes 3.1 and 8.3) that families wanted to be kept up-to-date with the progress of their child or young person’s care, including the drafting and progressing of their EHC plan, and providing adequate services and care regimens. Families felt stressed and frustrated by the lack of information around delays, whilst families that were kept informed felt more positively. Therefore, the committee recommended that young people and their families be updated on the progress of their care and support [1.1.23]. Based on their experience, the committee also agreed it was important for up-to-date information to be provided about what to expect from services (to help families to communicate their expectations when they get to services); how to raise a concern about their care (as families often do not know how to do this); their entitlements within the education, health and care system (as cultural diversities can mean families are not aware that support is available) and how to feedback to encourage service development [1.1.23].</p><p>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, which was supported by evidence from one of the qualitative reviews (see evidence report M, sub-theme 2.4). 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. Therefore, the committee made a recommendation in support of providing information to facilitate full participation and checking that this information has been understood [1.1.29]. These recommendations align with what is in the Children and Families Act 2014 about providing the information and support necessary to enable 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. The committee agreed that parents and carers should be encouraged to discuss meetings in advance with children and young people as this would allow for discussions in the more relaxed home environment and ensure that parents and carers understand the child or young person’s views in advance of the meeting [1.1.29]. This may further benefit the child or young person by reassuring them that they have the agency to participate in meetings. The committee also agreed it was important that parents and carers are provided with support to complete documents ahead of meetings, if required, because the paperwork can be extensive, requires a relatively high level of literacy and may be distressing for families [1.1.29]. Further, in the committee’s experience, if documents are not well completed ahead of meetings, meeting time might be dominated by addressing the paperwork rather than discussion of important issues. The committee also agreed that it was important to check that in person meetings are physically and financially accessible to the family because, in their experience, these can be barriers to attendance particularly for those with physical disabilities and families on low income [1.1.29].</p><p>The qualitative evidence also highlighted the need to tailor communication to suit the individual and circumstances and 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 severe communication difficulties (see evidence report A, sub-theme 3.1; evidence report M, sub-theme 2.4) in addition to the qualitative evidence about the importance of separating the views of children and young people from their parent’s views (see evidence report M, sub-theme 1.5). Further, there was qualitative evidence that children and young people had various levels of ability which affected their level of involvement and understanding and that it can be difficult to understand complicated terminology (see evidence report A, sub-themes 3.2 and 8.4). Therefore, the committee recommended that practitioners find out what communication formats are preferred by each child or young person and use this format to enable them to communicate their views. They also agreed that this format needs to capture equity, diversity and inclusion information relevant to the child or young person to prevent inequalities [1.1.17; 1.1.30]. They also recognised that a child or young person’s preferred communication format may vary for different purposes, for example they may have one preferred format for expressing themselves and a different preferred format for support with understanding the discussion [1.1.18].</p><p>The committee noted, based on their experience, that some children and young people may already have a communication passport which details their most effective means of communication. To prevent them, or their parents and carers, having to repeat information that has already been provided, the committee recommended asking if they have a communication passport [1.1.19]. They agreed it was important that this document was up-to-date to ensure it was relevant to the child or young person’s current preferences. The committee also recommended recording the child or young person’s communication preferences and sharing this information with relevant services to avoid the same information having to be repeated [1.1.20].</p><p>Additionally, the committee agreed it was important that the chair reminds everyone involved in the meeting about the child’s or young person’s preferred methods of communication during meetings [1.1.36]. These recommendations would be particularly relevant to those with cognitive impairments, communication needs and disorders and sensory impairments. The committee also recommended, based on their experience, that the chair finds out what is important to the child or young person ahead of meetings as the child or young person is likely to be more motivated to participate if the issues being discussed are those that are important to them and this is crucial as decisions made during meetings can be life-altering. They also recommended establishing the age, communication abilities and circumstances of the individual as this information can be used to plan meetings and will be particularly relevant to helping children and young people with communication difficulties, learning disabilities and sensory impairments to meaningfully participate in discussions [1.1.30]. The committee also agreed that it was important to prioritise children and young people’s views when planning meeting agendas, in addition to statutory content and other relevant issues that parents, carers or practitioners need to cover [1.1.31]. This was supported by qualitative evidence that using a child or young person-centred approach is valued and that parents felt positive when given the opportunity to provide their views and negative when their views were ignored (see evidence report A, sub-themes 9.1 and 9.2; evidence report M, sub-theme 1.1).</p><p>The committee agreed, based on their experience, that children and young people are not always given enough time to express their views during meetings. Children and young people may have learning disabilities, cognitive impairments and social and communication needs that impact on the time required to communicate information and they may be asked something unexpected which they will need time to process. Further, children and young people may give very brief answers and require encouragement and additional time to expand upon these. Therefore, the committee made a recommendation supporting giving children and young people plenty of time to communicate, absorb and reflect on the information discussed and check their understanding of this information [1.1.38].</p><p>The committee agreed, based on their experience, it was important to consider the child or young person’s preferences when structuring meetings to enable them to participate and understand what is happening [1.1.32]. This was supported by qualitative evidence highlighting the need to respect the rights of the child or young person, including their right to privacy and to make their own decisions, and that meetings can be intimidating for service users (see evidence report M, sub-themes 1.6 and 4.5). Specifically, in the committee’s experience meetings are scheduled to be convenient for the professionals attending, which may not be the same as what is preferred or convenient for the child or young person. Meetings may clash with activities that the child or young person enjoys or take place in environments that they are less comfortable in, due to lack of familiarity or sensory processing needs, so virtual options for attendance would be helpful. Further, children and young people may experience difficulty with sleeping and fatigue due to their conditions which will impact their ability to efficiently participate in meetings. The committee recommended that meetings are scheduled outside of school time where needed, as regularly missing school will impact negatively on educational progress and may lead children or young people to feel excluded or the focus of unwanted attention [1.1.32]. The committee were also aware, based on evidence from one of the qualitative reviews (see evidence report M, sub-theme 5.2) that it may be easiest for children, young people and their families to discuss sensitive information one-to-one with practitioners they feel comfortable with, so made a recommendation in support of this [1.1.32]. The committee made a recommendation supporting the need for breaks during long meetings [1.1.32]. The committee agreed it was important to consider what reasonable adjustments are required, for example children and young people might need more frequent and/or longer breaks than may usually occur during meetings and that this may be impacted by the format of the meeting and their individual care needs.</p><p>There was moderate quality evidence from one of the qualitative reviews (see evidence report K, sub-theme 1.2) that practitioners were often failing to take responsibility to be effectively involved in collaborative working, including not attending interagency meetings, or preparing for meetings in advance. The committee agreed that it was crucial education, health and social care practitioners who know the child and are involved in their care, along with key additional people relevant to the meeting in question, make all reasonable efforts to attend meetings to enable effective joint planning to meet the needs of disabled children and young people [1.1.33]. However, they acknowledged that it may not always be possible to attend. In these instances, the committee agreed that ideally a briefed delegate, or alternatively a written update or report, should be sent in their place [1.1.41].</p><p>The <a class="bibr" href="#niceng213er2.ref2" rid="niceng213er2.ref2">Mental Capacity Act (2005)</a> outlines the principles for involving young people aged 16 or over in decision making. However, the committee were aware that there are inconsistencies in both the interpretation and the implementation of the Mental Capacity Act in children who have a cognitive impairment, and so agreed it was important to highlight these principles to help standardise practice [1.1.50].</p><p>The SEND code of practice states that the views of parents must not be used as a proxy for young people’s views. However, the committee agreed that this is not consistently done in practice. It was also the experience of lay members on the committee that sometimes they are ignored, with practitioners primarily addressing parents, as it is assumed that they do not understand the discussion. Therefore, the committee made a recommendation to support the child and parent to understand each other’s perspective before then working impartially with both parties when there are disagreements [1.1.47]. Additionally, the committee agreed to emphasise the Mental Capacity Act guidance that the young person’s views must be upheld if they are over 16, are cognitively able to make the decision in question, and if disagreements with parents cannot be resolved [1.1.49], as some professionals, especially those less familiar with the Mental Capacity Act, may assume that parent’s views are paramount until the young person turns 18. In contrast, where disagreements cannot be resolved and the child is under 16, the views of the parents, or those with parental responsibility, should be taken into account, but practitioners need to remember that the child’s needs are paramount and that children under 16 can give their own consent if it is clear that they have enough intelligence, competence and understanding to fully appreciate what is involved [1.1.48]. This was supported by qualitative evidence that parents felt positive when given the opportunity to provide their views and negative when their views were ignored (see evidence report A, sub-themes 9.1 and 9.2), The committee agreed that there may be circumstances where children are unable to respond with intentional communication. They agreed that, in these circumstances, practitioners should think about whether their preferences can be identified through other methods, such as observation, play or behaviour [1.1.46].</p><p>The committee agreed, based on their experience, that practitioners should read the related sections of the information and advice produced by other practitioners within the same agency, to ensure they can support all the proposed EHC plan outcomes through their own work with the child or young person [1.1.3]. Currently, individual services often produce their advice and information to support the development of the EHC plan without knowing what the outcomes are for an individual child or young person. This can lead to inconsistencies between the advice and information provided by different services and an EHC plan that is not practical to implement, resolution of which often results in delays to the statutory 20 week timeframe for producing EHC plans. Based on their experience, the committee were confident that sharing the proposed outcomes with services would mean services could specify how they would help to achieve these outcomes when providing their advice and information. This would result in EHC plans that made sense and would support the agreed outcomes for each disabled child or young person with severe complex needs [1.4.6; 1.4.7]. This was further supported by qualitative evidence that additional assessments from services can cause delays in implementing EHC plans (see evidence report K, sub-theme 8.4). There was some evidence from the qualitative reviews that it can be difficult to understand complicated terminology and using accessible language in EHC plans would increase the involvement of children and young people and improve accountability (see evidence report A, sub-theme 3.2; evidence report M, sub-theme 2.5). The committee noted that certain sections of the plan would need to be written in technical language (for example information about health), but recommended that the outcomes and support provision sections should be written in a clear language that, where possible, can be understood by the child or young person and their families and carers (which would be particularly relevant for those with communication difficulties and poor literacy) [1.4.14]. This aligns with the committee’s understanding of the SEND Code of Practice (2015) that “EHC plans should be clear, concise, understandable and accessible to parents, children, young people, providers and practitioners.” Further, the committee 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]. This would be particularly relevant to those with cognitive impairments, communication difficulties and learning disabilities. 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.</p><p>There was no evidence about the effectiveness of telehealth and virtual platforms for delivering interventions and meeting the needs of the population of children and young people with severe complex needs; therefore, the committee made a recommendation for research in this area.</p></div><div id="niceng213er2.s1.1.12"><h4>Cost effectiveness and resource use</h4><p>There was no published economic evidence for this review and no economic modelling was undertaken.</p><p>The committee considered the recommendation to use person-centred planning tools to structure and conduct meetings. They agreed that the use of such tools would be best practice but is not always done as using these tools effectively requires both preparation time and time to use the tool itself. As a result, compliance with statutory timescales is often prioritised over a truly person-centred approach. Where person-centred planning tools are not currently being used, no new staff will be required for this to happen but existing staff will have to work differently in order to free up the time needed to use the tools. As a result of using person-centred planning tools, the support specified for children and young people is likely to be fit for purpose and help individuals progress towards their agreed outcomes. Consequently, there are likely to be fewer problems that need to be resolved and fewer complaints/tribunals resulting from dissatisfaction with the support provided which will save both time and money later in the process. Also children and young person and their families will be more likely to engage with the specified support, resulting in less money being spent on support that doesn’t get used.</p><p>The committee explained that review meetings are normally held during the school day as schools have responsibility for organising the meeting and teachers are required to attend. The recommendations mean there will need to be more flexibility about when review meetings are held which could have some resource implications. However, the committee agreed that only a subset of children and young people with an EHC plan will need review meetings to be held outside of the school day. In these instances, health and social care staff should be able to work alternative hours to minimise any resource impact. Education staff will not have this flexibility so schools will need to negotiate patterns of annual directed time flexibly including allowing teachers to use their planning, preparation and assessment time if meetings have to be held outside of the school day. Therefore, any resource implications should not be significant.</p><p>The recommendations imply longer meetings with more breaks therefore potentially taking more time. Similarly, listening to parents views in addition to those of the child or young person will require more professionals time, as will resolving disagreements between children and young people and their parents/carers. However, the committee explained that the participation of children and young people is essential to their care/engagement with care, and the committee justified the recommendations because of this. Engagement with care will positively impact their care, quality of life, and general well-being, outweighing any additional costs. The committee also referred to person-centred care, which informs service planning. If this is not done correctly, it may impact decision-making and end up in a provision that does not meet children and young people's needs, low satisfaction, and complaints. All of which may cost services much more further down the line.</p><p>The committee noted that there is a widespread professional expectation that practitioners within a service would work together to agree the advice and information provided to support development of EHC plans. to ensure they can support all the proposed outcomes through their own work with the child or young person. However, Local authorities may need to change their practice to provide services with the proposed outcomes for children and young people up-front so that services can specify how they will help to achieve these outcomes when providing their advice and information. This should result in the advice and information provided by different services being more consistent (and less time being needed to resolve inconsistencies and issues) and an EHC plan that is practical to implement. This will have a positive affect on the care and support received by children and young people and on their ability to achieve the desired outcomes. It should also reduce some of the delays to producing EHC plans in the statutory 20 week timeframe. Whilst the recommendation will be a new practice for most services, is unlikely to have significant resource implications as more coordination beforehand will save time associated with any subsequent corrections and revisions. It will also ensure aligned advice, efficient provision, and fewer challenges from parents due to, for example, inconsistent advice.</p><p>The committee explained that all other recommendations reinforce existing good practices across services. However, there might be some resource implications for services that provide sub-optimal care or have a different interpretation of the SEND Code of Practice (2015).</p></div><div id="niceng213er2.s1.1.13"><h4>Recommendations supported by this evidence review</h4><p>This evidence review supports recommendations 1.1.3 – 1.1.6, 1.1.8 – 1.1.10, 1.1.11, 1.1.17 – 1.1.20, 1.1.23, 1.1.29 – 1.1.33, 1.1.35, 1.1.36, 1.1.38, 1.1.41, 1.1.46 – 1.1.50, 1.4.6, 1.4.7, 1.4.14, 1.4.15 and the research recommendation on telehealth and virtual platforms. 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), Views and experiences of service providers (evidence report M).</p></div></div></div><div id="niceng213er2.rl.r1"><h2 id="_niceng213er2_rl_r1_">References – included studies</h2><ul class="simple-list"><div id="niceng213er2.rl.r2"><h3>Effectiveness</h3><ul class="simple-list"><p>No studies were identified which were applicable to this review question.</p></ul></div><div id="niceng213er2.rl.r3"><h3>Other</h3><ul class="simple-list"><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er2.ref1"><p id="p-76">
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<strong>Department for Education and Department for Health 2015</strong>
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</p>Department for Education and Department for Health, Special educational needs and disability code of practice: 0 to 25 years. Statutory guidance for organisations which work with and support children and young people who have special educational needs or disabilities. Available at: <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://assets<wbr style="display:inline-block"></wbr>​.publishing<wbr style="display:inline-block"></wbr>​.service.gov.uk<wbr style="display:inline-block"></wbr>​/government/uploads/system<wbr style="display:inline-block"></wbr>​/uploads/attachment_data<wbr style="display:inline-block"></wbr>​/file/398815<wbr style="display:inline-block"></wbr>​/SEND_Code_of_Practice_January_2015<wbr style="display:inline-block"></wbr>​.pdf</a> [Accessed 05/11/2020]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er2.ref2"><p id="p-77">
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<strong>Mental Capacity Act 2005</strong>
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</p>Mental Capacity Act, 2005. Available at: <a href="http://www.legislation.gov.uk/ukpga/2005/9/contents" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">http://www<wbr style="display:inline-block"></wbr>​.legislation<wbr style="display:inline-block"></wbr>​.gov.uk/ukpga/2005/9/contents</a> [Accessed 23/02/2021]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er2.ref3"><p id="p-78">
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<strong>NICE 2018</strong>
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</p>National Institute for Health and Care Excellence, Evidence standards framework for digital health technologies, Corporate document [ECD7], 2018. Available at: <a href="https://www.nice.org.uk/corporate/ecd7/chapter/section-a-evidence-for-effectiveness-standards" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://www<wbr style="display:inline-block"></wbr>​.nice.org<wbr style="display:inline-block"></wbr>​.uk/corporate/ecd7/chapter<wbr style="display:inline-block"></wbr>​/section-a-evidence-for-effectiveness-standards</a> [Accessed 29/06/2021]</div></p></li></ul></div></ul></div><div id="appendixesappgroup1"><h2 id="_appendixesappgroup1_">Appendices</h2><div id="niceng213er2.appa"><h3>Appendix A. Review protocol</h3><div id="niceng213er2.appa.s1"><h4>Review protocol for review question: What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</h4><p id="niceng213er2.appa.et1"><a href="/books/NBK579713/bin/niceng213er2-appa-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 2. Review protocol</a><span class="small"> (PDF, 270K)</span></p></div></div><div id="niceng213er2.appb"><h3>Appendix B. Literature search strategies</h3><div id="niceng213er2.appb.s1"><h4>Literature search strategies for review question: What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</h4><div id="niceng213er2.appb.s1.1"><h5>Databases: Medline; Medline EPub Ahead of Print; and Medline In-Process & Other Non-Indexed Citations</h5><p id="niceng213er2.appb.et1"><a href="/books/NBK579713/bin/niceng213er2-appb-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (182K)</span></p></div><div id="niceng213er2.appb.s1.2"><h5>Databases: Embase; and Embase Classic</h5><p id="niceng213er2.appb.et2"><a href="/books/NBK579713/bin/niceng213er2-appb-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (182K)</span></p></div><div id="niceng213er2.appb.s1.3"><h5>Database: Health Management Information Consortium (HMIC)</h5><p id="niceng213er2.appb.et3"><a href="/books/NBK579713/bin/niceng213er2-appb-et3.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (168K)</span></p></div><div id="niceng213er2.appb.s1.4"><h5>Database: Social Policy and Practice</h5><p id="niceng213er2.appb.et4"><a href="/books/NBK579713/bin/niceng213er2-appb-et4.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (120K)</span></p></div><div id="niceng213er2.appb.s1.5"><h5>Database: PsycInfo</h5><p id="niceng213er2.appb.et5"><a href="/books/NBK579713/bin/niceng213er2-appb-et5.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (144K)</span></p></div><div id="niceng213er2.appb.s1.6"><h5>Database: Emcare</h5><p id="niceng213er2.appb.et6"><a href="/books/NBK579713/bin/niceng213er2-appb-et6.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (165K)</span></p></div><div id="niceng213er2.appb.s1.7"><h5>Databases: Cochrane Central Register of Controlled Trials (CCTR); and Cochrane Database of Systematic Reviews (CDSR)</h5><p id="niceng213er2.appb.et7"><a href="/books/NBK579713/bin/niceng213er2-appb-et7.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (168K)</span></p></div><div id="niceng213er2.appb.s1.8"><h5>Database: Database of Abstracts of Reviews of Effects (DARE)</h5><p id="niceng213er2.appb.et8"><a href="/books/NBK579713/bin/niceng213er2-appb-et8.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (154K)</span></p></div><div id="niceng213er2.appb.s1.9"><h5>Database: Health Technology Abstracts (HTA)</h5><p id="niceng213er2.appb.et9"><a href="/books/NBK579713/bin/niceng213er2-appb-et9.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (98K)</span></p></div><div id="niceng213er2.appb.s1.10"><h5>Databases: Applied Social Sciences Index & Abstracts (ASSIA); Social Services Abstracts; Sociological Abstracts; and ERIC (Education Resources Information Centre)</h5><p id="niceng213er2.appb.et10"><a href="/books/NBK579713/bin/niceng213er2-appb-et10.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (96K)</span></p></div><div id="niceng213er2.appb.s1.11"><h5>Database: British Education Index</h5><p id="niceng213er2.appb.et11"><a href="/books/NBK579713/bin/niceng213er2-appb-et11.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (130K)</span></p></div><div id="niceng213er2.appb.s1.12"><h5>Database: CINAHL Plus (Cumulative Index to Nursing and Allied Health Literature)</h5><p id="niceng213er2.appb.et12"><a href="/books/NBK579713/bin/niceng213er2-appb-et12.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (112K)</span></p></div><div id="niceng213er2.appb.s1.13"><h5>Database: Social Sciences Citation Index (SSCI)</h5><p id="niceng213er2.appb.et13"><a href="/books/NBK579713/bin/niceng213er2-appb-et13.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (135K)</span></p></div><div id="niceng213er2.appb.s1.14"><h5>Database: Social Care Online</h5><p id="niceng213er2.appb.et14"><a href="/books/NBK579713/bin/niceng213er2-appb-et14.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (92K)</span></p></div></div></div><div id="niceng213er2.appc"><h3>Appendix C. Effectiveness evidence study selection</h3><div id="niceng213er2.appc.s1"><h4>Study selection for review question: What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</h4><p id="niceng213er2.appc.et1"><a href="/books/NBK579713/bin/niceng213er2-appc-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 1. Study selection flow chart</a><span class="small"> (PDF, 104K)</span></p></div></div><div id="niceng213er2.appd"><h3>Appendix D. Effectiveness evidence</h3><div id="niceng213er2.appd.s1"><h4>Evidence tables for review question: What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</h4><p>No evidence was identified which was applicable to this review question.</p></div></div><div id="niceng213er2.appe"><h3>Appendix E. Forest plots</h3><div id="niceng213er2.appe.s1"><h4>Forest plots for review question: What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</h4><p>No evidence was identified which was applicable to this review question.</p></div></div><div id="niceng213er2.appf"><h3>Appendix F. GRADE tables</h3><div id="niceng213er2.appf.s1"><h4>GRADE tables for review question: What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</h4><p>No evidence was identified which was applicable to this review question.</p></div></div><div id="niceng213er2.appg"><h3>Appendix G. Economic evidence study selection</h3><div id="niceng213er2.appg.s1"><h4>Economic evidence study selection for review question: What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</h4><p>One global search was undertaken – please see <a href="/books/NBK579713/bin/niceng213er2_bm2.pdf">Supplement B</a> for details on study selection.</p></div></div><div id="niceng213er2.apph"><h3>Appendix H. Economic evidence tables</h3><div id="niceng213er2.apph.s1"><h4>Economic evidence tables for review question: What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</h4><p>No evidence was identified which was applicable to this review question.</p></div></div><div id="niceng213er2.appi"><h3>Appendix I. Economic model</h3><div id="niceng213er2.appi.s1"><h4>Economic model for review question: What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</h4><p>No economic analysis was conducted for this review question.</p></div></div><div id="niceng213er2.appj"><h3>Appendix J. Excluded studies</h3><div id="niceng213er2.appj.s1"><h4>Excluded studies for review question: What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</h4><div id="niceng213er2.appj.s1.1"><h5>Effectiveness studies</h5><p id="niceng213er2.appj.et1"><a href="/books/NBK579713/bin/niceng213er2-appj-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 3. Excluded studies and reasons for their exclusion</a><span class="small"> (PDF, 247K)</span></p></div><div id="niceng213er2.appj.s1.2"><h5>Economic studies</h5><p>No economic evidence was identified for this review. See <a href="/books/NBK579713/bin/niceng213er2_bm2.pdf">Supplement B</a> for further information.</p></div></div></div><div id="niceng213er2.appk"><h3>Appendix K. Research recommendations - full details</h3><div id="niceng213er2.appk.s1"><h4>Research recommendations for review question: What are the most effective practices (for example, communication and information management) to enable health, social care and education services to work together to involve disabled children and young people with severe complex needs in understanding, planning and reviewing their health, social care and education?</h4><div id="niceng213er2.appk.s1.1"><h5>Research recommendation</h5><p>What is the effectiveness of telehealth and virtual platforms for communication with disabled children and young people with severe complex needs and providing education, health and social care interventions?</p></div><div id="niceng213er2.appk.s1.2"><h5>Why this is important</h5><p>There is a lack of evidence for the effectiveness of virtual platforms to facilitate participation of children and young people with severe complex needs in their care. Further research can inform healthcare, education and social care professionals in planning their use of face-to-face and virtual interventions.</p></div><div id="niceng213er2.appk.s1.3"><h5>Rationale for research recommendation</h5><p id="niceng213er2.appk.et1"><a href="/books/NBK579713/bin/niceng213er2-appk-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 4. Research recommendation rationale</a><span class="small"> (PDF, 165K)</span></p></div><div id="niceng213er2.appk.s1.4"><h5>Modified PICO table</h5><p id="niceng213er2.appk.et2"><a href="/books/NBK579713/bin/niceng213er2-appk-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 5. Research recommendation modified PICO table</a><span class="small"> (PDF, 161K)</span></p></div></div></div></div></div><div class="fm-sec"><div><p>Final</p></div><div><p>Evidence reviews</p><p>These evidence reviews were developed by the National Guideline Alliance which is a part of the Royal College of Obstetricians and Gynaecologists</p></div><div><p><b>Disclaimer</b>: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.</p><p>Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.</p><p>NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the <a href="http://wales.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Welsh Government</a>, <a href="http://www.scotland.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Scottish Government</a>, and <a href="https://www.northernireland.gov.uk/" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Northern Ireland Executive</a>. All NICE guidance is subject to regular review and may be updated or withdrawn.</p></div><div class="half_rhythm"><a href="/books/about/copyright/">Copyright</a> © NICE 2022.</div><div class="small"><span class="label">Bookshelf ID: NBK579713</span><span class="label">PMID: <a href="https://pubmed.ncbi.nlm.nih.gov/35471798" title="PubMed record of this title" ref="pagearea=meta&targetsite=entrez&targetcat=link&targettype=pubmed">35471798</a></span></div></div><div class="small-screen-prev"></div><div class="small-screen-next"></div></article><article data-type="table-wrap" id="figobniceng213er2tab1"><div id="niceng213er2.tab1" class="table"><h3><span class="label">Table 1</span><span class="title">Summary of the protocol (PICO table)</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK579713/table/niceng213er2.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng213er2.tab1_lrgtbl__"><table class="no_bottom_margin"><tbody><tr><th id="hd_b_niceng213er2.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population</th><td headers="hd_b_niceng213er2.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Disabled children and young people from birth to 25 years with severe complex needs requiring health, social care and education support.</td></tr><tr><th id="hd_b_niceng213er2.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Intervention</th><td headers="hd_b_niceng213er2.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>Joint working strategies to involve disabled children and young people in the understanding, planning and reviewing their care and education.</p>
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<p>For example:<ul><li class="half_rhythm"><div>Individualised communication strategies:<ul class="circle"><li class="half_rhythm"><div>Services working together with communication aids and systems (for example interpretive, assistive technology, signing, play therapy)</div></li><li class="half_rhythm"><div>Shared care plans and/or records in understandable format</div></li><li class="half_rhythm"><div>Shared decision making</div></li><li class="half_rhythm"><div>Person centred planning</div></li><li class="half_rhythm"><div>Peer support (Ready steady go toolkit)</div></li><li class="half_rhythm"><div>Advocate (to empower the child or young person to communicate)</div></li><li class="half_rhythm"><div>Self-management</div></li><li class="half_rhythm"><div>Patient-initiated appointment systems</div></li></ul></div></li></ul></p></td></tr><tr><th id="hd_b_niceng213er2.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Comparison</th><td headers="hd_b_niceng213er2.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Any other active strategy to involve disabled children and young people</div></li><li class="half_rhythm"><div>No specific strategy to involve disabled children and young people</div></li></ul>
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</td></tr><tr><th id="hd_b_niceng213er2.tab1_1_1_4_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Outcome</th><td headers="hd_b_niceng213er2.tab1_1_1_4_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Critical</b><ul><li class="half_rhythm"><div>Satisfaction (child or young person) with health, social care and education services (for example as measured by validated scales or assisted communication aids such as talking mats or ‘it’s all about me’)</div></li><li class="half_rhythm"><div>Understanding of own health, social care and education needs (for example as measured by assisted communication aids such as measured by talking mats, ‘it’s all about me’)</div></li><li class="half_rhythm"><div>Involvement of child or young person in planning and reviewing health, social care and education (for example reported by child or young person or parent or carer, as recorded in EHC plan, annual review or Ofsted/CQC SEND inspection reports)</div></li></ul></p>
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<p><b>Important</b><ul><li class="half_rhythm"><div>Extent to which health, social care and educational needs are met (for example as measured by validated scales or whether EHC plans are met)</div></li><li class="half_rhythm"><div>Delays in health care, social care and/or education</div></li></ul></p></td></tr></tbody></table></div><div class="tblwrap-foot"><div><dl class="temp-labeled-list small"><dl class="bkr_refwrap"><dt></dt><dd><div><p class="no_margin">CQC: Care Quality Commission; EHC: education, health and care; Ofsted: The Office for Standards in Education, Children’s Services and Skills; SEND: special educational needs and disability</p></div></dd></dl></dl></div></div></div></article></div><div id="jr-scripts"><script src="/corehtml/pmc/jatsreader/ptpmc_3.22/js/libs.min.js"> </script><script src="/corehtml/pmc/jatsreader/ptpmc_3.22/js/jr.min.js"> </script></div></div>
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