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stroke-linecap="round" style="fill:#FFF" d="m320,350a153,153 0 1,0-2,2l170,170m-91-117 110,110-26,26-110-110"></path></svg></a><a id="jr-fip-done" class="wsprkl btn" title="Dismiss find">✘</a></nav><nav id="jr-fip-info-p"><a id="jr-fip-prev" class="wsprkl btn" title="Jump to previuos match">◀</a><button id="jr-fip-matches">no matches yet</button><a id="jr-fip-next" class="wsprkl btn" title="Jump to next match">▶</a></nav></nav></div><div id="jr-epub-interstitial" class="hidden"></div><div id="jr-content"><article data-type="main"><div class="main-content lit-style"><div class="fm-sec bkr_bottom_sep"><div class="bkr_thumb"><a href="https://www.nice.org.uk" title="National Institute for Health and Care Excellence (NICE)" class="img_link icnblk_img" ref="pagearea=logo&targetsite=external&targetcat=link&targettype=publisher"><img class="source-thumb" src="/corehtml/pmc/pmcgifs/bookshelf/thumbs/th-niceng213er13-lrg.png" alt="Cover of Evidence review of views and experiences of service providers" /></a></div><div class="bkr_bib"><h1 id="_NBK579712_"><span itemprop="name">Evidence review of views and experiences of service providers</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 M</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="niceng213er13.s1"><h2 id="_niceng213er13_s1_">Views and experiences of service providers</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 1.1.1, 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).</p><div id="niceng213er13.s1.1"><h3>Review question</h3><p>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?</p><div id="niceng213er13.s1.1.1"><h4>Introduction</h4><p>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.</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 plans.</p></div><div id="niceng213er13.s1.1.2"><h4>Summary of the protocol</h4><p>See <a class="figpopup" href="/books/NBK579712/table/niceng213er13.tab1/?report=objectonly" target="object" rid-figpopup="figniceng213er13tab1" rid-ob="figobniceng213er13tab1">Table 1</a> for a summary of the population, phenomenon of interest and context characteristics of this review.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng213er13tab1"><a href="/books/NBK579712/table/niceng213er13.tab1/?report=objectonly" target="object" title="Table 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng213er13tab1" rid-ob="figobniceng213er13tab1"><img class="small-thumb" src="/books/NBK579712/table/niceng213er13.tab1/?report=thumb" src-large="/books/NBK579712/table/niceng213er13.tab1/?report=previmg" alt="Table 1. Summary of the protocol." /></a><div class="icnblk_cntnt"><h4 id="niceng213er13.tab1"><a href="/books/NBK579712/table/niceng213er13.tab1/?report=objectonly" target="object" rid-ob="figobniceng213er13tab1">Table 1</a></h4><p class="float-caption no_bottom_margin">Summary of the protocol. </p></div></div><p>For further details see the review protocol in <a href="#niceng213er13.appa">appendix A</a>.</p></div><div id="niceng213er13.s1.1.3"><h4>Methods and process</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="#niceng213er13.appa">appendix A</a> and the methods document (<a href="/books/NBK579712/bin/niceng213er13_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="niceng213er13.s1.1.4"><h4>Qualitative evidence</h4><div id="niceng213er13.s1.1.4.1"><h5>1.1.1.1. Included studies</h5><p>Fourteen qualitative studies were included in this review (<a class="bibr" href="#niceng213er13.ref1" rid="niceng213er13.ref1">Boesley 2018</a>; <a class="bibr" href="#niceng213er13.ref2" rid="niceng213er13.ref2">Boyce 2015</a>; <a class="bibr" href="#niceng213er13.ref3" rid="niceng213er13.ref3">Children’s Commissioner for Wales 2018</a>; <a class="bibr" href="#niceng213er13.ref4" rid="niceng213er13.ref4">Council for Disabled Children 2018</a>; <a class="bibr" href="#niceng213er13.ref5" rid="niceng213er13.ref5">Hurt 2019</a>; <a class="bibr" href="#niceng213er13.ref6" rid="niceng213er13.ref6">McConkey 2013</a>; <a class="bibr" href="#niceng213er13.ref7" rid="niceng213er13.ref7">Molteni 2013</a>; <a class="bibr" href="#niceng213er13.ref8" rid="niceng213er13.ref8">Palikara 2019</a>; <a class="bibr" href="#niceng213er13.ref9" rid="niceng213er13.ref9">RIP STARS 2018</a>; <a class="bibr" href="#niceng213er13.ref10" rid="niceng213er13.ref10">Rodriguez 2014</a>; <a class="bibr" href="#niceng213er13.ref11" rid="niceng213er13.ref11">Sales 2018</a>; <a class="bibr" href="#niceng213er13.ref12" rid="niceng213er13.ref12">Spivack 2014</a>; <a class="bibr" href="#niceng213er13.ref13" rid="niceng213er13.ref13">Taylor 2014</a>; <a class="bibr" href="#niceng213er13.ref14" rid="niceng213er13.ref14">Young 2018</a>).</p><p>The date of publication ranged from 2013 to 2019. All included studies were conducted in the UK and provided data on the views and experiences of commissioners, providers and practitioners of joined-up care between education, health and social care services. Data collection methods included: semi-structured survey (<a class="bibr" href="#niceng213er13.ref8" rid="niceng213er13.ref8">Palikara 2019</a>); interviews (<a class="bibr" href="#niceng213er13.ref13" rid="niceng213er13.ref13">Taylor 2004</a>), semi-structured interviews (<a class="bibr" href="#niceng213er13.ref1" rid="niceng213er13.ref1">Boesley 2018</a>; <a class="bibr" href="#niceng213er13.ref2" rid="niceng213er13.ref2">Boyce 2015</a>; <a class="bibr" href="#niceng213er13.ref4" rid="niceng213er13.ref4">Council for Disabled Children 2018</a>; <a class="bibr" href="#niceng213er13.ref6" rid="niceng213er13.ref6">McConkey 2013</a>; <a class="bibr" href="#niceng213er13.ref11" rid="niceng213er13.ref11">Sales 2018</a>; <a class="bibr" href="#niceng213er13.ref12" rid="niceng213er13.ref12">Spivack 2014</a>), focus groups (<a class="bibr" href="#niceng213er13.ref3" rid="niceng213er13.ref3">Children’s Commissioner for Wales 2018</a>; <a class="bibr" href="#niceng213er13.ref5" rid="niceng213er13.ref5">Hurt 2019</a>; <a class="bibr" href="#niceng213er13.ref10" rid="niceng213er13.ref10">Rodriguez 2014</a>), interviews and group discussions (<a class="bibr" href="#niceng213er13.ref9" rid="niceng213er13.ref9">RIP STARS 2018</a>), semi-structured interviews or focus groups (<a class="bibr" href="#niceng213er13.ref14" rid="niceng213er13.ref14">Young 2018</a>), and focus groups, semi-structured interviews and a questionnaire with an open-ended question (<a class="bibr" href="#niceng213er13.ref7" rid="niceng213er13.ref7">Molteni 2013</a>). Study populations included professionals from education, health and social care services. The included studies are summarised in <a class="figpopup" href="/books/NBK579712/table/niceng213er13.tab2/?report=objectonly" target="object" rid-figpopup="figniceng213er13tab2" rid-ob="figobniceng213er13tab2">Table 2</a>.</p><p>See the literature search strategy in <a href="#niceng213er13.appb">appendix B</a> and study selection flow chart in <a href="#niceng213er13.appc">appendix C</a>.</p></div><div id="niceng213er13.s1.1.4.2"><h5>1.1.1.2. Excluded studies</h5><p>Studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng213er13.appj">appendix J</a>.</p></div></div><div id="niceng213er13.s1.1.5"><h4>Summary of studies included in the qualitative evidence</h4><p>Summaries of the studies that were included in this review are presented in <a class="figpopup" href="/books/NBK579712/table/niceng213er13.tab2/?report=objectonly" target="object" rid-figpopup="figniceng213er13tab2" rid-ob="figobniceng213er13tab2">Table 2</a>.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng213er13tab2"><a href="/books/NBK579712/table/niceng213er13.tab2/?report=objectonly" target="object" title="Table 2" class="img_link icnblk_img figpopup" rid-figpopup="figniceng213er13tab2" rid-ob="figobniceng213er13tab2"><img class="small-thumb" src="/books/NBK579712/table/niceng213er13.tab2/?report=thumb" src-large="/books/NBK579712/table/niceng213er13.tab2/?report=previmg" alt="Table 2. Summary of included studies." /></a><div class="icnblk_cntnt"><h4 id="niceng213er13.tab2"><a href="/books/NBK579712/table/niceng213er13.tab2/?report=objectonly" target="object" rid-ob="figobniceng213er13tab2">Table 2</a></h4><p class="float-caption no_bottom_margin">Summary of included studies. </p></div></div><p>See the full evidence tables in <a href="#niceng213er13.appd">appendix D</a>. No meta-analysis was conducted (and so there are no forest plots in <a href="#niceng213er13.appe">appendix E</a>).</p><p>The following themes were identified through analysis of the included studies:
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<ul><li class="half_rhythm"><div>Child/young person centred approach</div></li><li class="half_rhythm"><div>Involvement of children and young people</div></li><li class="half_rhythm"><div>Involvement of families and carers</div></li><li class="half_rhythm"><div>Relationships between service providers and service users</div></li><li class="half_rhythm"><div>Information and support</div></li><li class="half_rhythm"><div>Service provider knowledge and training</div></li><li class="half_rhythm"><div>Experience of EHC plans</div></li><li class="half_rhythm"><div>Improved transition</div></li><li class="half_rhythm"><div>Short breaks and respite breaks provide benefit</div></li></ul></p><p>The data from the included studies were synthesised and explored in a number of central themes and sub-themes (central themes shown in <b>Error! Reference source not found.</b>; see <a href="#niceng213er13.appl">appendix L</a> for sub-theme maps).</p><div class="iconblock whole_rhythm clearfix ten_col fig" id="figniceng213er13fig1" co-legend-rid="figlgndniceng213er13fig1"><a href="/books/NBK579712/figure/niceng213er13.fig1/?report=objectonly" target="object" title="Figure 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng213er13fig1" rid-ob="figobniceng213er13fig1"><img class="small-thumb" src="/books/NBK579712/bin/niceng213er13f1.gif" src-large="/books/NBK579712/bin/niceng213er13f1.jpg" alt="Figure 1. Theme map." /></a><div class="icnblk_cntnt" id="figlgndniceng213er13fig1"><h4 id="niceng213er13.fig1"><a href="/books/NBK579712/figure/niceng213er13.fig1/?report=objectonly" target="object" rid-ob="figobniceng213er13fig1">Figure 1</a></h4><p class="float-caption no_bottom_margin">Theme map. </p></div></div></div></div><div id="niceng213er13.s1.1.6"><h3>Summary of the qualitative evidence</h3><p>The evidence generated 9 main themes from the views and experiences of commissioners, providers and practitioners. Nine studies provided evidence relating to a child or young person centred approach. Three studies provided evidence relating to the involvement of children and young people. Six studies provided evidence relating to the involvement of the child or young person’s families and carers. Seven studies provided evidence relating to relationships between service providers and service users. Four studies provided evidence relating to information and support. Four studies provided evidence relating to knowledge and training. Three studies provided evidence relating to experience of Education, Health and Care (EHC) plans. Two studies provided evidence relating to improved transition. Two studies provided evidence relating to the benefit of short breaks and respite breaks. The quality of the evidence ranged from very low to high. See <a href="#niceng213er13.appf">appendix F</a> for full GRADE-CERQual tables.</p></div><div id="niceng213er13.s1.1.7"><h3>Economic evidence</h3><div id="niceng213er13.s1.1.7.1"><h4>1.1.1.3. Included studies</h4><p>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 <a href="/books/NBK579712/bin/niceng213er13_bm2.pdf">Supplement B</a> for details.</p></div><div id="niceng213er13.s1.1.7.2"><h4>1.1.1.4. Excluded studies</h4><p>Studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng213er13.appj">appendix J</a>.</p></div></div><div id="niceng213er13.s1.1.8"><h3>Summary of included economic evidence</h3><p>No economic studies were identified which were applicable to this review question.</p></div><div id="niceng213er13.s1.1.9"><h3>Economic model</h3><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="niceng213er13.s1.1.10"><h3>Evidence statements</h3><div id="niceng213er13.s1.1.10.1"><h4>1.1.1.5. Economic</h4><p>No economic studies were identified which were applicable to this review question.</p></div></div><div id="niceng213er13.s1.1.11"><h3>The committee’s discussion and interpretation of the evidence</h3><div id="niceng213er13.s1.1.11.1"><h4>1.1.1.6. The outcomes that matter most</h4><p>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.</p></div><div id="niceng213er13.s1.1.11.2"><h4>1.1.1.7. The quality of the evidence</h4><p>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.</p><p>The quality of the review findings is summarised here according to the over-arching themes and sub-themes:</p><div id="niceng213er13.s1.1.11.2.1"><h5>Main theme 1: Child/young person centred approach</h5><ul><li class="half_rhythm"><div>Sub-theme 1:1: Using a child/young person centred approach is valued. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1:2: Children and young people benefit from using a consistent approach. The overall quality of this sub-theme was judged to be very moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.3: Service providers are falling short of using a child/young person centred approach. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.4: Recognising the child/young person’s potential and supporting them to reach it. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.5: Importance of separating the views of the child or young person from the views of parents. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.6: Respecting the rights of the child or young person. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er13.s1.1.11.2.2"><h5>Main theme 2: Involvement of children and young people</h5><ul><li class="half_rhythm"><div>Sub-theme 2.1: EHC plans have increased focus on views of child/young person. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 2.2: Importance of accurately capturing the views of the child/young person. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 2.3: Involvement of the child/young person should depend on their understanding. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 2.4: Supporting children and young people to prepare for meetings and communicate their views. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 2.5: Using accessible language in EHC plans would enable children and young people to be involved and improve accountability. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er13.s1.1.11.2.3"><h5>Main theme 3: Involvement of families and carers</h5><ul><li class="half_rhythm"><div>Sub-theme 3.1: Involvement of families is valued and improves relevancy, accuracy and usefulness of EHC plans. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 3.2: Involvement of families can be limited and depends on individual service providers. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 3.3: Families as providers of care. The overall quality of this sub-theme was judged to be low.</div></li></ul></div><div id="niceng213er13.s1.1.11.2.4"><h5>Main theme 4: Relationships between service providers and service users</h5><ul><li class="half_rhythm"><div>Sub-theme 4.1: Managing parents’ expectations. The overall quality of this subtheme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 4.2: Individuals or services going above and beyond to deliver a good service. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 4.3: Families are less accepting of key workers who have not had much involvement with the family. The overall quality of this sub-theme was judged to be very low.</div></li><li class="half_rhythm"><div>Sub-theme 4.4: People making decisions are out of touch with the needs of the child/young person. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 4.5: Meetings with professionals can be intimidating for service users. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er13.s1.1.11.2.5"><h5>Main theme 5: Information and support</h5><ul><li class="half_rhythm"><div>Sub-theme 5.1: Service users should be given more information and support throughout the EHC plan process. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 5.2: Sharing information reduces distress for service users and makes the best use of resources. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er13.s1.1.11.2.6"><h5>Main theme 6: Service provider knowledge and training</h5><ul><li class="half_rhythm"><div>Sub-theme 6.1: Service providers value the different skillsets and knowledge of others and opportunities to learn from each other and build expertise. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme: 6.2: More training and multi-agency work is needed to communicate effectively with children/young people. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er13.s1.1.11.2.7"><h5>Main theme 7: Experience of EHC plans</h5><ul><li class="half_rhythm"><div>Sub-theme 7.1: Information in EHC plans is not always accurate. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 7.2: Challenges due to timing of introducing EHC plans. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 7.3: Introduction of EHC plans has reduced the impact of service provider bias on access to assessment. The overall quality of this sub-theme was judged to be very low.</div></li></ul></div><div id="niceng213er13.s1.1.11.2.8"><h5>Main theme 8: Improved transition</h5><ul><li class="half_rhythm"><div>Sub-theme 8.1: Extending service provision to 25 has (or should) improve transitions. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er13.s1.1.11.2.9"><h5>Main theme 9: Short breaks and respite breaks provide benefit</h5><ul><li class="half_rhythm"><div>Sub-theme 9.1: Short breaks benefit whole family. The overall quality of this subtheme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 9.2: The amount of respite provided should be balanced and responsive to families’ needs. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 9.3: Young adult (short break) services should be offered up to age 30. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div></div><div id="niceng213er13.s1.1.11.3"><h4>1.1.1.8. Benefits and harms</h4><p>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.</p><p>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].</p><p>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).</p><p>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].</p><p>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.</p><p>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.”</p><p>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].</p><p>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].</p><p>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.</p><p>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].</p><p>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].</p><p>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.</p></div><div id="niceng213er13.s1.1.11.4"><h4>1.1.1.9. Cost effectiveness and resource use</h4><p>No existing economic evidence was identified for this review and no economic analysis was undertaken.</p><p>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.</p><p>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.</p><p>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).</p><p>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.</p></div><div id="niceng213er13.s1.1.11.5"><h4>1.1.1.10. Other factors the committee took into account</h4><p>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.</p><p>
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<b>Recommendations supported by this evidence review</b>
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</p><p>This evidence review supports recommendations 1.1.1, 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).</p></div></div></div><div id="niceng213er13.rl.r1"><h2 id="_niceng213er13_rl_r1_">References – included studies</h2><ul class="simple-list"><div id="niceng213er13.rl.r2"><h3>1.1.1.11. Qualitative</h3><ul class="simple-list"><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref1"><p id="p-280">
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<strong>Boesley 2018</strong>
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</p>Boesley
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L., Crane
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L., ‘Forget the health and care and just call them education plans’: SENCOs’ perspectives on education, health and care plans, Journal of Research in Special Educational Needs, 18, 36–47, 2018</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref2"><p id="p-281">
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<strong>Boyce 2015</strong>
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</p>Boyce
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T., Dahlmann-Noor
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A., Bowman
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R., Keil
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S., Support for infants and young people with sight loss: a qualitative study of sight impairment certification and referral to education and social care services, BMJ open, 5, e009622, 2015 [<a href="/pmc/articles/PMC4691759/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4691759</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/26685033" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26685033</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref3"><p id="p-282">
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<strong>Children’s Commissioner for Wales 2018</strong>
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</p>Children’s Commissioner for Wales, ‘Donť hold back’: transitions to adulthood for young people with learning disabilities, Swansea: Children’s Commissioner for Wales, 2018. Available at: <a href="https://www.childcomwales.org.uk/wp-content/uploads/2019/10/Dont-Hold-Back.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://www<wbr style="display:inline-block"></wbr>​.childcomwales<wbr style="display:inline-block"></wbr>​.org.uk/wp-content<wbr style="display:inline-block"></wbr>​/uploads/2019/10/Dont-Hold-Back.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref4"><p id="p-283">
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<strong>Council for Disabled Children 2018</strong>
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</p>Council for Disabled Children, Hamblin
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E., ‘Realistic positivity’: understanding the additional needs of young children placed for adoption, and supporting families when needs are unexpected, London: Council for Disabled Children, 2018. Available at: <a href="https://www.basw.co.uk/resources/realistic-positivity-understanding-additional-needs-young-children-placed-adoption-and" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://www<wbr style="display:inline-block"></wbr>​.basw.co.uk<wbr style="display:inline-block"></wbr>​/resources/realistic-positivity-understanding-additional-needs-young-children-placed-adoption-and</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref5"><p id="p-284">
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<strong>Hurt 2019</strong>
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</p>Hurt
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L., Langley
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K., North
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K., Southern
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A., Copeland
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L., Gillard
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J, Williams
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S., Understanding and improving the care pathway for children with autism, International Journal of Health Care Quality Assurance, 32, 208–223, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/30859873" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30859873</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref6"><p id="p-285">
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<strong>McConkey 2013</strong>
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</p>McConkey
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R., Gent
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C., Scowcroft
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E., Perceptions of effective support services to families with disabled children whose behaviour is severely challenging: a multi-informant study, Journal of Applied Research in Intellectual Disabilities, 26, 271–83, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/23408538" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23408538</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref7"><p id="p-286">
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<strong>Molteni 2013</strong>
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</p>Molteni
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P., Guldberg
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K., Logan
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N., Autism and multidisciplinary teamwork through the SCERTS model, British Journal of Special Education, 40, 137–145, 2013</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref8"><p id="p-287">
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<strong>Palikara 2019</strong>
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</p>Palikara
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O., Castro
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S., Gaona
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C., Eirinaki
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V., Professionals’ views on the new policy for special educational needs in England: ideology versus implementation, European Journal of Special Needs Education, 34, 83–97, 2019</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref9"><p id="p-288">
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<strong>RIP STARS 2018</strong>
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</p>RIP STARS, Defining quality and rights-based Education, Health and Care Plans (EHCPs) for disabled children and young people, Coventry: Coventry University, 2018. Available at: <a href="https://ripstarsnet.files.wordpress.com/2018/10/ripstars-finalreport2018-2.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://ripstarsnet<wbr style="display:inline-block"></wbr>​.files<wbr style="display:inline-block"></wbr>​.wordpress.com/2018<wbr style="display:inline-block"></wbr>​/10/ripstars-finalreport2018-2.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref10"><p id="p-289">
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<strong>Rodriguez 2014</strong>
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</p>Rodriguez
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A., King
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N., Sharing the care: the key-working experiences of professionals and the parents of life-limited children, International Journal of Palliative Nursing, 20, 165–172, 2014 [<a href="https://pubmed.ncbi.nlm.nih.gov/24763324" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24763324</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref11"><p id="p-290">
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<strong>Sales 2018</strong>
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</p>Sales
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N., Vincent
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K., Strengths and Limitations of the Education, Health and Care Plan Process from a Range of Professional and Family Perspectives, British Journal of Special Education, 45, 61–80, 2018</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref12"><p id="p-291">
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<strong>Spivack 2014</strong>
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</p>Spivack
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R., Craston
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M., Redman
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R., Evaluation of the Special Educational Needs and Disability Pathfinder Programme: Thematic report: Collaborative working with social care: Research report, London: Department for Education, 2014. Available at: <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/342287/RR356D_-_Social_Care_Thematic_Report.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/342287<wbr style="display:inline-block"></wbr>​/RR356D_-_Social_Care_Thematic_Report<wbr style="display:inline-block"></wbr>​.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref13"><p id="p-292">
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<strong>Taylor 2014</strong>
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</p>Taylor
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J., Stalker
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K., Fry
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D., Stewart
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A., Disabled children and child protection in Scotland: An investigation into the relationship between professional practice, child protection and disability, Glasgow: University of Strathclyde, 2014. Available at: <a href="https://strathprints.strath.ac.uk/46601/1/00447850.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https:<wbr style="display:inline-block"></wbr>​//strathprints<wbr style="display:inline-block"></wbr>​.strath.ac.uk/46601/1/00447850.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref14"><p id="p-293">
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<strong>Young 2018</strong>
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</p>Young
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L., Egdell
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A., Swallow
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V., Qualitative accounts of young-people, parents and staff involved with a purpose-designed, pilot short-break service for 18–24 year olds with life-limiting conditions, Children and Youth Services Review, 86, 142–150, 2018</div></p></li></ul></div><div id="niceng213er13.rl.r3"><h3>1.1.1.12. Other</h3><ul class="simple-list"><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er13.ref15"><p id="p-294">
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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></ul></div></ul></div><div id="appendixesappgroup1"><h2 id="_appendixesappgroup1_">Appendices</h2><div id="niceng213er13.appa"><h3>Appendix A. Review protocol</h3><div id="niceng213er13.appa.s1"><h4>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?</h4><p id="niceng213er13.appa.et1"><a href="/books/NBK579712/bin/niceng213er13-appa-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 3. Review protocol</a><span class="small"> (PDF, 203K)</span></p></div></div><div id="niceng213er13.appb"><h3>Appendix B. Literature search strategies</h3><div id="niceng213er13.appb.s1"><h4>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?</h4><div id="niceng213er13.appb.s1.1"><h5>Databases: Medline; Medline EPub Ahead of Print; and Medline In-Process & Other Non-Indexed Citations</h5><p id="niceng213er13.appb.et1"><a href="/books/NBK579712/bin/niceng213er13-appb-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (164K)</span></p></div><div id="niceng213er13.appb.s1.2"><h5>Databases: Embase; and Embase Classic</h5><p id="niceng213er13.appb.et2"><a href="/books/NBK579712/bin/niceng213er13-appb-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (174K)</span></p></div><div id="niceng213er13.appb.s1.3"><h5>Database: Health Management Information Consortium (HMIC)</h5><p id="niceng213er13.appb.et3"><a href="/books/NBK579712/bin/niceng213er13-appb-et3.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (190K)</span></p></div><div id="niceng213er13.appb.s1.4"><h5>Database: Social Policy and Practice</h5><p id="niceng213er13.appb.et4"><a href="/books/NBK579712/bin/niceng213er13-appb-et4.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (157K)</span></p></div><div id="niceng213er13.appb.s1.5"><h5>Database: PsycInfo</h5><p id="niceng213er13.appb.et5"><a href="/books/NBK579712/bin/niceng213er13-appb-et5.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (174K)</span></p></div><div id="niceng213er13.appb.s1.6"><h5>Database: Emcare</h5><p id="niceng213er13.appb.et6"><a href="/books/NBK579712/bin/niceng213er13-appb-et6.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (192K)</span></p></div><div id="niceng213er13.appb.s1.7"><h5>Databases: Cochrane Central Register of Controlled Trials (CCTR); and Cochrane Database of Systematic Reviews (CDSR)</h5><p id="niceng213er13.appb.et7"><a href="/books/NBK579712/bin/niceng213er13-appb-et7.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (206K)</span></p></div><div id="niceng213er13.appb.s1.8"><h5>Database: Database of Abstracts of Reviews of Effects (DARE)</h5><p id="niceng213er13.appb.et8"><a href="/books/NBK579712/bin/niceng213er13-appb-et8.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (186K)</span></p></div><div id="niceng213er13.appb.s1.9"><h5>Database: Applied Social Sciences Index & Abstracts (ASSIA)</h5><p id="niceng213er13.appb.et9"><a href="/books/NBK579712/bin/niceng213er13-appb-et9.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (184K)</span></p></div><div id="niceng213er13.appb.s1.10"><h5>Databases: Social Services Abstracts; Sociological Abstracts; and ERIC (Education Resources Information Centre)</h5><p id="niceng213er13.appb.et10"><a href="/books/NBK579712/bin/niceng213er13-appb-et10.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (138K)</span></p></div><div id="niceng213er13.appb.s1.11"><h5>Database: British Education Index</h5><p id="niceng213er13.appb.et11"><a href="/books/NBK579712/bin/niceng213er13-appb-et11.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (174K)</span></p></div><div id="niceng213er13.appb.s1.12"><h5>Database: CINAHL Plus (Cumulative Index to Nursing and Allied Health Literature)</h5><p id="niceng213er13.appb.et12"><a href="/books/NBK579712/bin/niceng213er13-appb-et12.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (139K)</span></p></div><div id="niceng213er13.appb.s1.13"><h5>Database: Social Sciences Citation Index (SSCI)</h5><p id="niceng213er13.appb.et13"><a href="/books/NBK579712/bin/niceng213er13-appb-et13.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (236K)</span></p></div><div id="niceng213er13.appb.s1.14"><h5>Database: Social Care Online</h5><p id="niceng213er13.appb.et14"><a href="/books/NBK579712/bin/niceng213er13-appb-et14.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (136K)</span></p></div></div></div><div id="niceng213er13.appc"><h3>Appendix C. Qualitative evidence study selection</h3><div id="niceng213er13.appc.s1.1"><h4>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?</h4><p id="niceng213er13.appc.et1"><a href="/books/NBK579712/bin/niceng213er13-appc-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (141K)</span></p></div></div><div id="niceng213er13.appd"><h3>Appendix D. Qualitative evidence</h3><div id="niceng213er13.appd.s1.1"><h4>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?</h4><p id="niceng213er13.appd.et1"><a href="/books/NBK579712/bin/niceng213er13-appd-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (490K)</span></p></div></div><div id="niceng213er13.appe"><h3>Appendix E. Forest plots</h3><div id="niceng213er13.appe.s1.1"><h4>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?</h4><p>No meta-analysis was conducted for this review question and so there are no forest plots.</p></div></div><div id="niceng213er13.appf"><h3>Appendix F. GRADE CERQual tables</h3><div id="niceng213er13.appf.s1.1"><h4>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?</h4><p id="niceng213er13.appf.et1"><a href="/books/NBK579712/bin/niceng213er13-appf-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 5. Evidence profile: Theme 1. Child/young person centred approach</a><span class="small"> (PDF, 207K)</span></p><p id="niceng213er13.appf.et2"><a href="/books/NBK579712/bin/niceng213er13-appf-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 6. Evidence profile: Theme 2. Involvement of children and young people</a><span class="small"> (PDF, 201K)</span></p><p id="niceng213er13.appf.et3"><a href="/books/NBK579712/bin/niceng213er13-appf-et3.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 7. Evidence profile: Theme 3. Involvement of families and carers</a><span class="small"> (PDF, 204K)</span></p><p id="niceng213er13.appf.et4"><a href="/books/NBK579712/bin/niceng213er13-appf-et4.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 8. Evidence profile: Theme 4. Relationships between service providers and service users</a><span class="small"> (PDF, 368K)</span></p><p id="niceng213er13.appf.et5"><a href="/books/NBK579712/bin/niceng213er13-appf-et5.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 9. Evidence profile: Theme 5. Information and support</a><span class="small"> (PDF, 134K)</span></p><p id="niceng213er13.appf.et6"><a href="/books/NBK579712/bin/niceng213er13-appf-et6.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 10. Evidence profile: Theme 6. Service provider knowledge and training</a><span class="small"> (PDF, 134K)</span></p><p id="niceng213er13.appf.et7"><a href="/books/NBK579712/bin/niceng213er13-appf-et7.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 11. Evidence profile: Theme 7. Experience of EHC plans</a><span class="small"> (PDF, 193K)</span></p><p id="niceng213er13.appf.et8"><a href="/books/NBK579712/bin/niceng213er13-appf-et8.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 12. Evidence profile: Theme 8. Improved transition</a><span class="small"> (PDF, 140K)</span></p><p id="niceng213er13.appf.et9"><a href="/books/NBK579712/bin/niceng213er13-appf-et9.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 13. Evidence profile: Theme 9. Short breaks and respite breaks provide benefit</a><span class="small"> (PDF, 192K)</span></p></div></div><div id="niceng213er13.appg"><h3>Appendix G. Economic evidence study selection</h3><div id="niceng213er13.appg.s1.1"><h4>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?</h4><p>One global search was undertaken – please see <a href="/books/NBK579712/bin/niceng213er13_bm2.pdf">Supplement B</a> for details on study selection.</p></div></div><div id="niceng213er13.apph"><h3>Appendix H. Economic evidence tables</h3><div id="niceng213er13.apph.s1.1"><h4>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?</h4><p>No evidence was identified which was applicable to this review question.</p></div></div><div id="niceng213er13.appi"><h3>Appendix I. Economic model</h3><div id="niceng213er13.appi.s1.1"><h4>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?</h4><p>No economic analysis was conducted for this review question.</p></div></div><div id="niceng213er13.appj"><h3>Appendix J. Excluded studies</h3><div id="niceng213er13.appj.s1.1"><h4>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?</h4><div id="niceng213er13.appj.s1.2"><h5>1.1.1.13. Qualitative studies</h5><p id="niceng213er13.appj.et1"><a href="/books/NBK579712/bin/niceng213er13-appj-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Table 14. Excluded studies and reasons for their exclusion</a><span class="small"> (PDF, 246K)</span></p></div><div id="niceng213er13.appj.s1.3"><h5>1.1.1.14. Economic studies</h5><p>No economic evidence was identified for this review. See <a href="/books/NBK579712/bin/niceng213er13_bm2.pdf">Supplement B</a> for further information.</p></div></div></div><div id="niceng213er13.appk"><h3>Appendix K. Research recommendations – full details</h3><div id="niceng213er13.appk.s1.1"><h4>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?</h4><p>No research recommendations were made for this review question.</p></div></div><div id="niceng213er13.appl"><h3>Appendix L. Qualitative thematic maps</h3><div id="niceng213er13.appl.s1.1"><h4>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?</h4><p id="niceng213er13.appl.et1"><a href="/books/NBK579712/bin/niceng213er13-appl-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 3. Sub-theme map for child/young person centred approach</a><span class="small"> (PDF, 135K)</span></p><p id="niceng213er13.appl.et2"><a href="/books/NBK579712/bin/niceng213er13-appl-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 4. Sub-theme map for involvement of children and young people</a><span class="small"> (PDF, 140K)</span></p><p id="niceng213er13.appl.et3"><a href="/books/NBK579712/bin/niceng213er13-appl-et3.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 5. Sub-theme map for involvement of families and carers</a><span class="small"> (PDF, 108K)</span></p><p id="niceng213er13.appl.et4"><a href="/books/NBK579712/bin/niceng213er13-appl-et4.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 6. Sub-theme map for relationships between service providers and services users</a><span class="small"> (PDF, 135K)</span></p><p id="niceng213er13.appl.et5"><a href="/books/NBK579712/bin/niceng213er13-appl-et5.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 7. Sub-theme map for information and support</a><span class="small"> (PDF, 92K)</span></p><p id="niceng213er13.appl.et6"><a href="/books/NBK579712/bin/niceng213er13-appl-et6.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 8. Sub-theme map for service provider knowledge and training</a><span class="small"> (PDF, 96K)</span></p><p id="niceng213er13.appl.et7"><a href="/books/NBK579712/bin/niceng213er13-appl-et7.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 9. Sub-theme map for experience of EHC plans</a><span class="small"> (PDF, 108K)</span></p><p id="niceng213er13.appl.et8"><a href="/books/NBK579712/bin/niceng213er13-appl-et8.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 10. Sub-theme map for improved transition</a><span class="small"> (PDF, 76K)</span></p><p id="niceng213er13.appl.et9"><a href="/books/NBK579712/bin/niceng213er13-appl-et9.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Figure 11. Sub-theme map for short breaks and respite breaks provide benefit</a><span class="small"> (PDF, 109K)</span></p></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="http://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: NBK579712</span><span class="label">PMID: <a href="https://pubmed.ncbi.nlm.nih.gov/35471791" title="PubMed record of this title" ref="pagearea=meta&targetsite=entrez&targetcat=link&targettype=pubmed">35471791</a></span></div></div><div class="small-screen-prev"></div><div class="small-screen-next"></div></article><article data-type="table-wrap" id="figobniceng213er13tab1"><div id="niceng213er13.tab1" class="table"><h3><span class="label">Table 1</span><span class="title">Summary of the protocol</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK579712/table/niceng213er13.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng213er13.tab1_lrgtbl__"><table class="no_bottom_margin"><tbody><tr><th id="hd_b_niceng213er13.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population</th><td headers="hd_b_niceng213er13.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Commissioners and providers of, and practitioners working in, health, social care or educational services for disabled children and young people from birth to 25 years with severe complex needs who require health, social care and education support.</div></li></ul>
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</td></tr><tr><th id="hd_b_niceng213er13.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Phenomenon of Interest</th><td headers="hd_b_niceng213er13.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>The views and experiences of commissioners, providers and practitioners on joint working between health, social care and education services for disabled children and young people with severe complex needs.
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<ul><li class="half_rhythm"><div>Commissioning, providing or practitioner working in one or more of the three services; health, social care and education.</div></li></ul></p>
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<p>Potential themes include:
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<ul><li class="half_rhythm"><div>Respect and understanding of contributions from other services</div></li><li class="half_rhythm"><div>Joint budgets</div></li><li class="half_rhythm"><div>Funding arrangements (e.g. cost is entirely picked up by education in some settings)</div></li><li class="half_rhythm"><div>Joint contracts (e.g. section 75 arrangements – pooled budgets and shared risks)</div></li><li class="half_rhythm"><div>Co-location</div></li><li class="half_rhythm"><div>Joint IT systems/data management</div></li><li class="half_rhythm"><div>Policy and legislation (across services)</div></li><li class="half_rhythm"><div>Nature of partnerships or integration (what do they mean in practice)</div></li><li class="half_rhythm"><div>Managing transfer between services</div></li><li class="half_rhythm"><div>Capacity</div></li><li class="half_rhythm"><div>Workforce (mix of skills, cultural attitude and staff retention)</div></li><li class="half_rhythm"><div>Footprint of integrated services – may not be geographical overlap</div></li><li class="half_rhythm"><div>Accessibility of services</div></li><li class="half_rhythm"><div>Entry point into health / social care system</div></li><li class="half_rhythm"><div>Shared decision making, person centred care and support, coproduction</div></li><li class="half_rhythm"><div>Invisible conditions or disabilities</div></li><li class="half_rhythm"><div>Carers who are themselves disabled</div></li><li class="half_rhythm"><div>Ability to access the right provision for need, and the timeliness of that</div></li><li class="half_rhythm"><div>Number of appointments</div></li><li class="half_rhythm"><div>Tribunals and legal opinions; health care complaints</div></li><li class="half_rhythm"><div>Discrimination or exclusion from integrated services by service providers</div></li><li class="half_rhythm"><div>Out of area placements – residential schools (could be positive or negative)</div></li><li class="half_rhythm"><div>Communication between professionals</div></li><li class="half_rhythm"><div>Usefulness and impact of EHCP on provision</div></li><li class="half_rhythm"><div>Negative experiences of joint working – e.g. navigating a large system (barriers, power imbalances)</div></li><li class="half_rhythm"><div>Looked after children</div></li><li class="half_rhythm"><div>Care coordinator / advocate / key worker</div></li><li class="half_rhythm"><div>Proactive services – empowerment for self-care</div></li><li class="half_rhythm"><div>Reasonable adjustments</div></li><li class="half_rhythm"><div>Medical needs</div></li></ul></p></td></tr><tr><th id="hd_b_niceng213er13.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Context</th><td headers="hd_b_niceng213er13.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>All settings will be covered in which health, social care and education is provided for disabled children and young people from birth to 25 years with severe complex needs.</p>
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<p>Studies sought will be those published in the English language from the UK, from 2013 until the date the searches are run.</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">EHCP: education, health and care plans</p></div></dd></dl></dl></div></div></div></article><article data-type="table-wrap" id="figobniceng213er13tab2"><div id="niceng213er13.tab2" class="table"><h3><span class="label">Table 2</span><span class="title">Summary of included studies</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK579712/table/niceng213er13.tab2/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng213er13.tab2_lrgtbl__"><table class="no_bottom_margin"><thead><tr><th id="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Study</th><th id="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Population</th><th id="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Description of child/young person</th><th id="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Methods</th><th id="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Themes applied after thematic synthesis</th></tr></thead><tbody><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref1" rid="niceng213er13.ref1">Boesley 2018</a></p>
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<p>Education, Health and Social Care Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=16</p>
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<p>SENCOs based in England and had undertaken an application for an EHC plan, or transferred a statement of SEN into an EHC plan.</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> NR</p>
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<p><b>Age Range (Mean):</b> NR</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> Primary and secondary schools across England (telephone)</p>
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|
<p><b>Data collection:</b> Semi-structured interviews</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Information and support</div></li><li class="half_rhythm"><div>Relationships between service providers and service users</div></li><li class="half_rhythm"><div>Involvement of families and carers</div></li><li class="half_rhythm"><div>Experience of EHC plans</div></li><li class="half_rhythm"><div>Child/young person centred approach</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref2" rid="niceng213er13.ref2">Boyce 2015</a></p>
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|
<p>Education, Health and Social Care Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=35</p>
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|
<p>Health, education and social care professionals involved in certifying and supporting infants and children with vision impairment</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> Severely sight impaired or sight impaired (including infants and children with complex needs)</p>
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|
<p><b>Age Range (Mean):</b> NR</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> Hospital</p>
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|
<p><b>Data collection:</b> Semi-structured interviews</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
<ul><li class="half_rhythm"><div>Service provider knowledge and training</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref3" rid="niceng213er13.ref3">Children’s Commissioner for Wales 2018</a></p>
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|
<p>Education, Health and Social Care Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=43</p>
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|
<p>Professionals from education, health, social care and voluntary services who work with young people with learning disabilities</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> Learning disabilities</p>
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|
<p><b>Age Range (Mean):</b> 14 to 26 years (NR)</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> NR</p>
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|
<p><b>Data collection:</b> Focus groups</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Relationships between service providers and service users</div></li><li class="half_rhythm"><div>Child/young person centred approach</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref4" rid="niceng213er13.ref4">Council for Disabled Children 2018</a></p>
|
|
<p>Education, Health and Social Care Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=13</p>
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|
<p>Professionals with experience of supporting adopted children with disabilities that became apparent during or after adoption</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><b>Needs or conditions:</b> ADHD, attachment difficulties/disorder, ASD, complex health needs, developmental delay or trauma, dyspraxia, FASD/FAS, genetic condition, hearing loss, learning difficulties, sensory processing issues</td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> Primarily telephone</p>
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|
<p><b>Data collection:</b> Semi-structured interviews</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Service provider knowledge and training</div></li><li class="half_rhythm"><div>Relationships between service providers and service users</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref5" rid="niceng213er13.ref5">Hurt 2019</a></p>
|
|
<p>Education and Health Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=16</p>
|
|
<p>Health and education professionals working within an NHS multidisciplinary neurodevelopmental team and a mainstream primary school</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> ASD</p>
|
|
<p><b>Age Range (Mean):</b> NR</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> One health board and one primary school in South Wales</p>
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|
<p><b>Data collection:</b> Focus groups</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Relationships between service providers and service users</div></li><li class="half_rhythm"><div>Involvement of families and carers</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref6" rid="niceng213er13.ref6">McConkey 2013</a></p>
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|
<p>Health and Social Care Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=34</p>
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|
<p>Key workers and Referrers of children currently receiving services from Action for Children, or had received services in the past 2 years</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> Developmental disabilities and severely challenging behaviours</p>
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|
<p><b>Age Range (Mean):</b> Up to 19 years (NR)</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> In a private room in the short break service/family homes (face-to-face), and telephone</p>
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|
<p><b>Data collection:</b> Semi-structured interviews</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
<ul><li class="half_rhythm"><div>Short breaks and respite breaks provide benefit</div></li><li class="half_rhythm"><div>Relationships between service providers and service users</div></li><li class="half_rhythm"><div>Child/young person centred approach</div></li></ul>
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|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref7" rid="niceng213er13.ref7">Molteni 2013</a></p>
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<p>Education and Health Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=22</p>
|
|
<p>Teams of professionals involved in implementing the Social Communication, Emotional Regulation, Transactional Support (SCERTS) model</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> Severe learning difficulties</p>
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|
<p><b>Age Range (Mean):</b> NR</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> NR</p>
|
|
<p><b>Data collection:</b> Focus groups, semi-structured interviews and one open-ended question on a questionnaire</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Child/young person centred approach</div></li><li class="half_rhythm"><div>Service provider knowledge and training</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref8" rid="niceng213er13.ref8">Palikara 2019</a></p>
|
|
<p>Education, Health and Social Care Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=374</p>
|
|
<p>Professionals working in special education</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> NR</p>
|
|
<p><b>Age Range (Mean):</b> NR</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> Survey distributed through research network</p>
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|
<p><b>Data collection:</b> Semi-structured survey</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Improved transition</div></li><li class="half_rhythm"><div>Child/young person centred approach</div></li><li class="half_rhythm"><div>Involvement of families and carers</div></li><li class="half_rhythm"><div>Experience of EHC plans</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref9" rid="niceng213er13.ref9">RIP STARS 2018</a></p>
|
|
<p>Education, Health and Social Care Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">N=17</td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> NR</p>
|
|
<p><b>Age Range (Mean):</b> 13 to 25</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> NR</p>
|
|
<p><b>Data collection:</b> Interviews and group discussions</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Information and support</div></li><li class="half_rhythm"><div>Involvement of children and young people</div></li><li class="half_rhythm"><div>Child/young person centred approach</div></li><li class="half_rhythm"><div>Involvement of families and carers</div></li><li class="half_rhythm"><div>Experience of EHC plans</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref10" rid="niceng213er13.ref10">Rodriguez 2014</a></p>
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|
<p>Unclear what services were involved</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=21</p>
|
|
<p>Professionals working in paediatric care</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> Cancer, cerebral palsy, muscular dystrophy, congenital disorder, neurological disorder, genetic disorder</p>
|
|
<p><b>Age Range (Mean):</b> NR</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> One UK county, including both urban and rural areas</p>
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|
<p><b>Data collection:</b> Focus groups</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Relationships between service providers and service users</div></li><li class="half_rhythm"><div>Information and support</div></li><li class="half_rhythm"><div>Involvement of families and carers</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref11" rid="niceng213er13.ref11">Sales 2018</a></p>
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|
<p>Education, Health and Social Care Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">N=9</td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> NR</p>
|
|
<p><b>Age Range (Mean):</b> NR</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> Work or home (face-to-face)</p>
|
|
<p><b>Data collection:</b> Semi-structured interviews</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Involvement of families and carers</div></li><li class="half_rhythm"><div>Child/young person centred approach</div></li><li class="half_rhythm"><div>Involvement of children and young people</div></li><li class="half_rhythm"><div>Improved transition</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref12" rid="niceng213er13.ref12">Spivack 2014</a></p>
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<p>Education, Health and Social Care Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=NR</p>
|
|
<p>Lead professionals involved in collaborative working with social care.</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> NR</p>
|
|
<p><b>Age Range (Mean):</b> NR</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> NR (face-to-face) and telephone</p>
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<p><b>Data collection:</b> Semi-structured interviews</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Child/young person centred approach</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref13" rid="niceng213er13.ref13">Taylor 2014</a></p>
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<p>Education, Health and Social Care Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=61</p>
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<p>Professionals with experience of responding to at least two child protection cases involving a disabled child.</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> NR</p>
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|
<p><b>Age Range (Mean):</b> NR</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> Telephone</p>
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<p><b>Data collection:</b> Interviews</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Service provider knowledge and training</div></li><li class="half_rhythm"><div>Relationships between service providers and service users</div></li><li class="half_rhythm"><div>Information and support</div></li><li class="half_rhythm"><div>Involvement of children and young people</div></li></ul>
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|
</td></tr><tr><td headers="hd_h_niceng213er13.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><a class="bibr" href="#niceng213er13.ref14" rid="niceng213er13.ref14">Young 2018</a></p>
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<p>Health and Social Care Services</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p>N=15</p>
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<p>Health or Social Care staff working the pilot service</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Needs or conditions:</b> NR</p>
|
|
<p><b>Age Range (Mean):</b> NR</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;"><p><b>Setting:</b> Pilot short-break service for young adults aged 18–24 years with life-limiting conditions</p>
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<p><b>Data collection:</b> Semi-structured interviews or focus groups</p></td><td headers="hd_h_niceng213er13.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Service provider knowledge and training</div></li><li class="half_rhythm"><div>Relationships between service providers and service users</div></li><li class="half_rhythm"><div>Information and support</div></li><li class="half_rhythm"><div>Involvement of children and young people</div></li></ul>
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</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">ADHD: attention deficit hyperactivity disorder; ASD: autistic spectrum disorder; EHC: education health care; FAS: fetal alcohol syndrome; FASD: fetal alcohol spectrum disorders; NR: not reported; SCERTS: social communication, emotional regulation, transactional support; SEN: special educational needs; SENCO: special educational needs coordinator</p></div></dd></dl></dl></div></div></div></article><article data-type="fig" id="figobniceng213er13fig1"><div id="niceng213er13.fig1" class="figure bk_fig"><div class="graphic"><a href="/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Figure%201.%20Theme%20map.&p=BOOKS&id=579712_niceng213er13f1.jpg" target="tileshopwindow" class="inline_block pmc_inline_block ts_canvas img_link" title="Click on image to zoom"><div class="ts_bar small" title="Click on image to zoom"></div><img data-src="/books/NBK579712/bin/niceng213er13f1.jpg" alt="Figure 1. Theme map." class="tileshop" title="Click on image to zoom" /></a></div><h3><span class="label">Figure 1</span><span class="title">Theme map</span></h3></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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