BCCG Children and Young People s Continuing Care Policy and Process. BCCG Executive BCCG Risk Committee

Transcription

1 BCCG Children and Young People s Continuing Care Policy and Process April 2016 Auth: Responsibility: Mary Low- Children s System Redesign Manager Direct of Strategy and Redesign Effective Date: 1 st April 2016 Review Date: 1 st April 2018 Reviewing/Endsing committees Approved by Risk Management Group Date Ratified by Executive Team Version Number Related Documents BCCG Executive BCCG Risk Committee V11 TOR BCCG CHC/CC Eligibility Panel BCCG IFR Policy BCCG CHC Policy Continuing Care Policy and Process f Children and Young People Page 1

2 POLICY DEVELOPMENT PROCESS Names of those involved in policy development Name Designation Mary Low Children s System Redesign Mary.low@bedfdshireccg.nhs.uk Manager- Children s Complex Care Karlene Allen Head of Children and Maternity Services Karlene.allen@bedfdshireccg.nhs.uk Michelle Bradley Assistant Direct Mental Health and Learning Disabilities And Acting AD f Integrated Care Michelle.bradley@bedfdshireccg.nhs.u k Gareth James NHS England-Section head - Disabled and Ill Child Services Team Children and Young People s Health & Wellbeing Bev Edwards ELFT- Lead Nurse CAMHS Learning Disability Team Gareth.james@dh.gsi.gov.uk Bev.edwards@elft.nhs.uk Alison Wardley SEPT- Children Community Alison.wardley@sept.nhs.uk Nursing Team Manager Katie Render BCCG Lead Nurse Katie.render@bedfdshireccg.nhs.uk Consultation ; Date Name Designation Diana BCCG Head of CHC Diana.butterwth@bedfdshireccg.nhs.uk Butterwth Alison Lathwell BCCG Direct of Alison/lathwell@bedfdshireccg.nhs.uk Strategy and Redesign Helen Redding Central Bedfdshire Helen.redding@centralbedfdshire.gov.uk Education Ken Harvey CBC JAP Panel Ken.harvey@centralbedfdshire.gov.uk chair and Head of service, Children with Disabilities & Children Health Gerard Jones Central Bedfdshire Gerard.jones@centralbedfdshire.gov.uk Assistant Direct Operations- Children s Services Edward Wong Central Bedfdshire Edward.wong@centralbedfdshire.gov.uk Head of cpate Parenting Continuing Care Policy and Process f Children and Young People Page 2

3 service/children s services Sue Harrison Central Bedfdshire Local Authity- Direct of Children s services Ben Pearson Central Bedfdshire Head of Children s services commissioning Karen Oellermann Tim Long Central Bedfdshire Head of Partnership & Communications BB MAP Panel chair and Head of School Suppt Services Phil Sawbridge Bedfd Bough Head of Looked After Children Kevin Crompton Bedfd Bough - Direct of Children s and Adult Services Colin Foster Bedfd Bough- Chief Education Officer Darryl Freeman Bedfd Bough- Assistant Direct (Children s and young people s safeguarding) Mandy Hyson Bedfd Bough Children s Placements Manager Rachel West SEPT- Deputy Direct Children & Specialist Services Sue Jalali Cambridge Community Services- Children s Services Manager Dr Graeme Lamb ELFT- Clinical Direct ELFT Children s Services Sue.harrison@centralbedfdshire.gov.uk Ben.pearson@centralbedfdshire.gov.uk Karen.oellermann@centralbedfdshire.gov.uk Tim.long@bedfd.gov.uk phil.sawbridge@bedfd.gov.uk Kevin.crompton@bedfd.gov.uk Colin.foster@bedfd.gov.uk Darry.freeman@bedfd.gov.uk Mandy.hyson@bedfd.gov.uk Rachel.west@sept.nhs.uk Sue.Jalali@ccs.nhs.uk Graeme.lamb@elft.nhs.uk Continuing Care Policy and Process f Children and Young People Page 3

4 Equality Impact Assessment prepared and held by Date Name Designation Mary Low Paul Curry, Equality and Diversity Manager, 3 rd March 2016 uk This document aims to clarify the respective roles and responsibilities of the services and to provide an objective, transparent process that will deliver timely and consistent decisions regarding the funding of care packages f children and young people who have specific health needs that meet the NHS Continuing Care criteria. The rept auth has detailed the consultation undertaken and the learning that has shaped the development of the policy. They have acknowledged that needs arising from protected characteristics under the Equality Act 2010 will be considered on an individual basis. The Equality Impact Assessment provides decision makers with sufficient infmation to be able to reasonably assess the potential impact. Committee where policy was discussed/approved/ratified Committee/Group Date Status Risk Management Approved BCCG Executive Committee Approved Continuing Care Policy and Process f Children and Young People Page 4

5 Contents Page Introduction.. 6 Purpose... 7 Eligibility... 8 Process outline and pathway Appeals/Complaints Funding Health Packages Transition from Children s Services to Adult Continuing Healthcare Services Joint commissioning f special educational needs and disability (SEND) Personal budgets Responsibilities Development process and Training Definitions Appendices Embedded on this page f ease of access to printing..25 Appendix A BCCG Clinical eligibility panel TOR 26 Appendix B Continuing Care Pathway diagram Appendix C BCCG Referral Fm Appendix D Guidance f the completion of the referral fm. 33 Appendix E BCCG Consent fm Appendix F BCCG Decision Suppt tool DST 36 Appendix G BCCG Equality Impact Assessment 65 Appendix H Bedfd Bough TOR MAP Panel 76 Appendix I Central Bedfdshire TOR JAP Panel.. 76 Continuing Care Policy and Process f Children and Young People Page 5

6 Introduction Background The Department of Health published its National Framewk f Continuing Care Needs of Children and Young people in March 2010, setting out guidance f partners in Health, Education and Social Care. This has recently been reviewed and is published, dated January The revision takes account of the new structures of NHS commissioning created by the Health and Social care Act 2012, the new integrated approach to the commissioning of services f children with SEND which the Children and families Act 2014 has introduced, and the changes to adult social care introduced by the Care Act This document aims to clarify the respective roles and responsibilities of those services and to provide an objective, transparent process that will deliver timely and consistent decisions regarding the funding of care packages f children and young people who have specific health needs that meet the NHS Continuing Care criteria. Definition What is children and young people s continuing care? Continuing care is required when the child young person s health needs cannot be met by existing universal specialist services. Continuing care f children and young people is needed where a child young person (under 18) has complex needs which cannot be met from the health services routinely commissioned by clinical commissioning groups (CCGs) (such as hospital paediatric care community nursing), NHS England (such as primary care and specialised services). It has been defined in recent regulations as: a package of care which is arranged and funded by a relevant body f a person aged 17 under to meet needs which have arisen as a result of disability, accident illness. 1 The fundamental principle of this framewk is that continuing care needs should be identified, and the package of care agreed, as part of a holistic assessment of the child young person s needs. 1 The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations Continuing Care Policy and Process f Children and Young People Page 6

7 The care needed may be resource intensive, and long-term, with a significant element of nursing care. It may be provided in a number of settings although usually community-based - and may involve me than one provider. This framewk is designed to suppt CCGs in determining if a child s needs are such that they can only be met through a package of continuing care. There can be many different facts which result in a child having a need f continuing care. These include congenital conditions, long-term and life-limiting conditions, disability, the after effects of serious illness injury. Assessment of a child s needs should also consider the extent to which a child may have a continuing care need due to challenging behaviour - culturally abnmal behaviours of such intensity, frequency duration that the physical safety of the person others is likely to be placed in jeopardy, behaviour which is likely to seriously limit use of result in the person being denied access to dinary community facilities. A decision on whether not continuing care is needed must be infmed not only by a clinical understanding of a child young person s condition, but also by an understanding of the way in which their needs affect their lives and those of their family. The emphasis should be on understanding the outcomes which would make the biggest difference to the child young person and their family, and how health services can suppt delivery of those aims. Where appropriate, continuing care should be part of a wider package of care, agreed and delivered by collabation between health, education and social care. The new arrangements f children with special educational needs disability (SEND) in particular provide a framewk f outcomes-focused joint assessments involving different partners across education, health and care, and many children and young people who need continuing care will have special educational needs disability. F the implications of the new SEND framewk see the section below on Joint commissioning f special educational needs disability. This framewk covers birth to 17 years. F adults - aged 18 and over - the National Framewk f NHS Continuing Healthcare and NHS-funded Nursing Care and the suppting guidance and tools should be used. Purpose Purpose of the Policy This policy aims to; Set out a continuing care process which BCCG will lead (as; section 3 of the NHS Act 2006: F ease of reference, this framewk refers to CCGs as the health commissioners, but it should be recognised that in some cases, f certain Continuing Care Policy and Process f Children and Young People Page 7

8 categies of the child young person, f specialised services NHS England will be the responsible commissioner) Ensure a joint, consistent and transparent approach to assessing care needs and commissioning and providing services in light of those needs Provide local practitioners with the knowledge and tools to follow the process Set out the transition arrangements from child to adult services in relation to continuing care arrangements The remit, membership and wking practices of the NHS Continuing Healthcare and Continuing Care f Children- Clinical Eligibility Panel are shown in Appendix A Set out an appeals/complaints process A child young person with continuing care needs may require services commissioned by the local authity and other partners. Where a child young person requires services commissioned by multiple ganisations the case is heard at the local panels ; Joint Allocation Panel (JAP) f Central Bedfdshire Local Authity and the Multi- Agency Panel (MAP) f Bedfd Bough Local authity. The key trigger f entry to the children s continuing care pathway is the recognition that the child young person has complex health needs above the level that universal and specialist health services are currently commissioned. The level and nature of local health commissioning varies across the country and it is imptant therefe to recognise that there is no standard set of universal and specialist health services. Eligibility The continuing care process determines if a child s needs can be met by existing universal specialised services, and if not, what additional care would be needed. Diagnosis of a particular disease condition is not in itself a determinant of a need f continuing care. Similarly, the establishment of a continuing care need should not be determined by the setting where care is provided by the characteristics of the professional who delivers the care. There should be no differentiation based on whether the health need is physical, mental psychological. The continuing care process should be (and be seen to be) fair, consistent, transparent, culturally sensitive, and non-discriminaty. BCCG must ensure they adopt an appropriate focus on those outcomes which make a difference to the child young person, and their family, and consider their wishes, expectations and preferences as regards how and where care is delivered and its impact. This evidence can only be obtained if the child young person and their family are involved in every stage of the process, and BCCG, their service provider, is active in engaging with them and documenting this evidence. The full continuing care process comprises of an assessment, decision-making, and provision phase. Continuing Care Policy and Process f Children and Young People Page 8

9 This continuing care pathway should aim to link children, young people and their families with community services, hospital-based services, local authity children s and young people s services and the third sect to ensure a joined-up and integrated approach to meeting needs. Below highlights the Continuing Care process key actions once the referral is accepted. Phase Step Summary of key actions Timescale Assessment Identify A child young person with a possible continuing care need is referred to the BCCG, via a referral fm available from the BCCG Lead Nurse f Children. (Pre-assessment) A child young person s health assess is nominated, and the process of assessment begins. Consent to share infmation is obtained from the legal guardian of the child young person. Assess The health assess undertakes the assessment, comprising: - preferences of child young person and their family; - holistic assessment of need; - repts from multi-disciplinary team; - Decision Suppt Tool f children and young people. Clock starts Recommend The health assess completes the process of assessment, and makes a recommendation. Decision Making Decide The multi-agency fum considers the recommendation and decides if the child young person has an agreed need which is presented by the Lead Nurse as a recommendation; they will also consider the educational and social care needs so that the child is considered holistically. Arrangement of provision Infm The child young person and their family are infmed of the decision by the BCCG Lead Nurse. Development of costed package of care. Any relevant ganisations, such as the local authity, and key health professionals involved in the child young person s care (eg GP, paediatrician) should also be notified. Deliver Commissioning of care planning, implementation of the package of care and its provision to the child young person is carried out by agreed contracted service provider. Ongoing moniting/contract management f the commissioned service. Ongoing Review Re-assessment of the child young person s continuing care needs by the Lead Nurse BCCG 6 Weeks Continuing Care Policy and Process f Children and Young People Page 9

10 Assess will be carried out after 3 months from the initial assessment and thereafter annually. The assessment phase is led by a children and young people s health assess nominated by the CCG; Lead Nurse. There are four areas of evidence that should be considered in the assessment: 1. the preferences of the child young person and their family 2. a holistic assessment of the needs of the child young person and their family, including carer assessment; 3. repts and risk assessments from the multidisciplinary team, evidence collated during the Education, Health and Care plan assessment; and; 4. the Children s Decision Suppt Tool. The outcome of the assessment is a recommendation from the assess as to whether not the child young person has continuing care needs that cannot be met by existing universal specialist services. The decision-making phase involves a multidisciplinary, multi-agency fum panel i.e Joint Allocation Panel (JAP) f Central Bedfdshire Local Authity children/young people and Multi Agency Panel (MAP) f Bedfd Bough Local authity children/young people. They decide on the recommendations and costed options put fward by the assess ( where available) These panels will then decide how the continuing care will be provided, what proption and level of resource is required to deliver it and how much needs to be specially commissioned, again taking into account the recommendation of the assess. A decision on the package of continuing care that may be provided should not be budget finance-led: the primary consideration should be suppting the child young person s assessed needs and outcomes. Decisions should be given verbally to the child young person and their family their representative, followed by fmal written notification. Written notification can be provided by the lead nurse following the verbal recommendation at the MDT. A clear written explanation f the decision must be given. Meeting face to face, and giving clear reasons is particularly imptant where the child young person and their family have expressed preferences that have not been met. Following a decision being made and communicated to the child young person and their family, if the decision is to provide continuing care, the arrangement of provision begins. BCCG and the local authity should use commissioning resources to make the necessary logistical, contractual and funding arrangements to ensure that provision of the package of continuing care is in place as soon as possible. They will also keep the package of care under regular review to ensure the developing child s Continuing Care Policy and Process f Children and Young People Page 10

11 needs continue to be suppted, this will take place at the Multi Agency Panel when required. Following notification of the decision, the child young person and their family should be involved in discussions on the next steps and time-frames to implement the package of continuing care. The opptunity f them to provide regular feedback will be a fundamental part of the ongoing review of the care package. It should be understood that there are significant differences between children s continuing care and NHS Continuing Healthcare f adults, which is subject to a statuty process. Although a child young person may be in receipt of a package of continuing care, they may not be eligible f NHS Continuing Healthcare NHS-funded Nursing Care once they turn 18. Further infmation on how to suppt transition is given below. Process outline and pathway The continuing care process begins when there is recognition that a child young person may have needs that cannot be met through existing universal specialist services alone. A child young person may be referred f assessment through a number of different routes, settings and care pathways. Referrals can be made by a variety of professionals, and this should include professionals wking in primary, secondary and tertiary care, Child and Adolescent Mental Health Services, community nursing teams, local authity-commissioned public health, school nursing and also education, and social care. Professionals in these settings should also be able to provide evidence to infm the continuing care process. BCCG Lead nurse will perfm the role of Children s Continuing Care Assess. They will wk closely with the relevant Health providers i.e. Lead professional f the child and all other agencies involved in the child s case i.e. Social Care and Education. A referral f Children s Continuing Care should be made to the Lead Nurse at BCCG. The Lead nurse will provide a referral fm, guidance to complete the fm. Consent will be sought by the Lead Nurse. The Lead Nurse will carry out a checklist initially befe a decision is made f a full Continuing Care assessment where appropriate. If the checklist indicates that the child/young person is not appropriate f a full Continuing care assessment then the case moves out of the process and is referred to ce services where appropriate. If fast track is required due to an urgent healthcare need then the Lead Nurse makes an interim decision based on available infmation/assessments and services will be commissioned and delivered. Continuing Care Policy and Process f Children and Young People Page 11

12 F a full Children s Continuing Care assessment all repts and infmation will be gathered by the Lead Nurse and a Decision Suppt Tool (DST) will be used to ascertain the health care needs of the child/young person. This will be carried out at a Multi-Agency meeting to fm a holistic picture of the child and their families needs. The Multi agency meeting will need to be attended by Health, Social Care and Education and the 11 care domains within the DST along with all other assessments and infmation to identify the care needs and recommendations as to how these needs may be addressed. This will then be presented at the monthly Joint Allocation Panel (JAP) f Central Bedfdshire the Multi Agency Panel (MAP) at Bedfd Bough Local Authity. Both Panels, JAP and MAP provide arrangements to ensure good practice has been followed and to reach a decision on each case regarding eligibility f continuing care, the community suppt package to be provided and the funding and Commissioning arrangements. See appendices H f BB MAP and Appendix I f CB J If the panel agrees with the recommendations presented then provision of services/placements can be agreed. Arrangements can then be made to commission the appropriate services to meet the identified needs. If further infmation is required further assessments are needed to determine all provision then this will be indicated at panel. The outcome of the panel decision will be communicated to the Family/child/YP by the appropriate agency i.e The BCCG Nurse will confirm/communicate the final outcome of the Continuing Care Assessment and whether the child/young person meets the criteria. If this decision is challenged the case can be heard at the BCCG CHC/CC Eligibility panel- see appendix A Panel members will have delegated responsibility to commit funding in accdance with each agencies financial governance arrangements Appeals/Complaints If the child young person their family carer wish to pursue concerns about the continuing care process about the decision itself, then the matter should be dealt with through BCCG complaints procedure. After this initial consultation the BCCG CHC/CC Eligibility Panel can review the decision suppt tool if so needed. Since the publication of the National Framewk Jan 2016, guidance nationally is f local areas to keep packages in place whilst a dispute is ongoing. This is now the revised BCCG position from Funding Health Packages The table below shows the Continuing Care Decision Suppt Tool to clarify how BCCG determine additional funding through Continuing Care. Continuing Care Policy and Process f Children and Young People Page 12

13 Children and young people are assessed using the Decision Making Tool (DST); each care domain can have up to six levels of need based on a mixture of complexity, intensity, unpredictability of need and risk to the child as reflected in the following levels: priity; severe; high; medium and low. The structure of the tool is set out in the diagram below: Care Domain P S H M L N Breathing Eating & Drinking Mobility Continence and elimination Skin and tissue viability Communication Drug Therapies and medicines Psychological and Emotional Needs (beyond what would typically be expected from a child young person of their age) Seizures Challenging Behaviour Totals KEY: P =Priity, S =Severe, H =High, M =Medium, L =Low Placements of children who are identified as having complex needs and who meet the Continuing Care criteria will be funded jointly. The following principles will apply: Continuing Care Eligibility: an assessment of one me weightings of Priity Severe in any of the domains indicates eligibility three highs in any of the domains. Funding will then be decided at the Multi- Agency Panels through negotiation of each individual; Responsibilities by agencies of health, education and social care will determine the amount of funding allocated to the complete package of care. Developing a multi-agency understanding of a child s needs, and then agreeing a package of care requires collabation between health, education and social care. Continuing Care Policy and Process f Children and Young People Page 13

14 Specialist health in existing care packages: In der f any existing care package to attract funding f needs identified in domains, the package needs to include a sustained specialist health component as a ce element. Timescales f the process (from referral to written confirmation of the panel decision) within 30 wking days. A faster track will be followed f urgent cases. BCCG is accountable f the process, therefe if the young person their carers wish to pursue concerns about the continuing care process the decision itself, the matter will be dealt with through the BCCG complaints procedure. The continuing care pathway is intended to be aligned with other processes in children s services such as SEND and Personal Budgets. Transition from Children s Services to Adult Continuing Healthcare Services The National Framewk f NHS Continuing Healthcare & funded-nursing care (2012, Department of Health) and the suppting guidance and Tools only applies to people aged 18 years over. It is imptant that both the Adult and the Children s Framewks consider transition. NHS Bedfdshire Clinical Commissioning Group recognise as best practice that future entitlement to adult NHS Continuing Healthcare should be clarified at as early a stage as possible in the transition planning process, especially when the young person s needs are likely to remain at a similar level until adulthood. Professionals responsible f children s transition into adult NHS Continuing Healthcare, should identify those young people f whom it is likely that NHS Continuing Healthcare will be necessary, and should notify NHS Bedfdshire Clinical Commissioning Group NHS Continuing Healthcare Team, who may have responsibility f them as adults. This should occur when a young person reaches the age of 14. This should be followed up by a fmal referral, completed Checklist f screening at age 16 to the adult NHS Continuing Healthcare Team. BCCG will participate in and engage where appropriate, in timely discussions with relevant Adult and Children s Services managers regarding all proposed placements / suppt packages funded by Children s Services that may require Adult Services funding post 18 (f example residential school placements) pri to any fmal agreements being made The lead nurse will where appropriate liaise with the relevant Adult Services to assist them to ensure that all necessary planning and financial negotiations are completed in good time, enabling the transition from Child to Adult Services to be as seamless as possible f all concerned. The lead nurse will liaise between CHC Adults and Children s Continuing Care Services where appropriate, to assist with the prevention of any legally binding financial commitments contractual agreements being made by Children s Services that will impact on Adult Services budgets when the person reaches eighteen without pri fmal agreement from the relevant manager(s) within Adult Services eligibility Continuing Care Policy and Process f Children and Young People Page 14

15 criteria.consider eligibility f NHS Continuing Healthcare and infm Children s Services of need to initiate application process where necessary. Share infmation and participate in joint planning meetings such as MAP /JAP NHS Bedfdshire Clinical Commissioning Group will ensure that it is actively involved in the strategic development and oversight of the local transition planning processes with their partners, and that their representation includes those who understand and represent adult NHS Continuing Healthcare. NHS Bedfdshire Clinical Commissioning Group will ensure that adult NHS Continuing Healthcare is appropriately represented in all transition planning meetings regarding individual young people whenever the individual s need suggest that there may be potential eligibility. Joint commissioning f special educational needs and disability (SEND) Since September , under section 26 of the Children and Families Act 2014, a new framewk f children and young people (up to age 25) with SEND will apply in England. All new entrants to the system will be suppted via these arrangements, and children and young people with existing statements of special educational needs will transfer to the new arrangements over a three year period. At the heart of the arrangements is an integrated Education, Health and Care plan (EHC plan). BCCG has wked with both local authities, to develop and publish a Local Offer, setting out in one place infmation about the range of education, health and social care services available f children and young people in this area and how these services can be accessed. This is identified f Children and young people who have SEN are disabled, this includes those who do not have EHC plans. The published local offer also includes details of continuing care services and how to access continuing care. A child young person with a continuing care need will often also have SEND, if this is the case then the continuing care needs/package should be captured as part of their Education, Health and Care plan (EHCP) As part of the EHC plan process a co-dinated assessment of a child young person s needs, based on multi-professional input, and focused on their improves outcomes should be included. The views and aspirations of the child young person, and of their family should be included as a key part of this process. There are elements common to both the EHC plan assessment, and the continuing care process; commissioners and local authities should ensure that data held from the two processes are aligned in a single set of needs and outcomes. The EHC plan assessment has a longer-timetable than the continuing care assessment ((20 weeks as opposed to 28 days), and the process is led by the local authity rather than the CCG Continuing Care Policy and Process f Children and Young People Page 15

16 Following National Guidance in the revised framewk January 2016 ; BCCG is introducing a referral fm and checklist- see appendix C, to be able to rapidly assess whether not a child is likely to have a continuing care need. This will infm the health assess undertaking responsibility f social care and health input to the co-dinated process. A decision by BCCG will be secured within 28 days on the continuing care element of the EHC plan, and the package of care commenced. This can then be integrated into the EHCP with the other education and social care elements as they are confirmed. The health assess s role would help facilitate the health input to the EHC plan. This would also allow a three month review to take place when the full EHC plan was considered f sign-off. As the new SEND arrangements extend up to age 25, there will be young people aged 18-25, who are assessed as having a primary health need under the NHS Continuing Healthcare framewk. This means that the NHS is responsible f providing all of the individual s assessed health and social care needs including accommodation, if that is part of the overall need) The local authity may not have any responsibility towards the young person. The local authity would still take the lead in co-dinating the EHC plan but the services they were ultimately responsible f securing would be negligible. Personal budgets Under the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2013, the families of a child young person eligible f continuing care have a right to have a personal health budget, covering the part of their care package which would be provided by the NHS. Where a child young person ( their family) eligible f continuing care requests a personal health budget, BCCG arrange f the provision of the care by means of a personal health budget. This can be achieved in one of several ways: a direct payment made to the young person their family; the agreement of a notional budget to be spent by BCCG following discussions with the child young person, and their family ( other representative) as to how best to secure the provision they need; the transfer of a real budget agreed as above, to a person ganisation which applies the money in a way agreed between BCCG and the child young person, and their family ( other representative). Personal health budgets are not restricted to children and young people eligible f continuing care. They can be offered to other children on a discretionary basis. Continuing Care Policy and Process f Children and Young People Page 16

17 F me guidance on personal health budgets, see Guidance on the right to have a Personal Health Budget in Adult NHS Continuing Healthcare and Children and Young People s Continuing Care (September 2014). ts/2014/personal_health_budgets_right_to_have_guidance.pd Responsibilities BCCG is responsible f leading the process of identifying the continuing care needs of a child young person f whom it has commissioning responsibility under section 3 of the NHS Act BCCG is not the only commissioner of health services; in some cases the commissioner may be NHS England e.g. NHSE commission specialist services. A child young person with continuing care needs may require services commissioned by the local authity, and other partners. Where a child young person requires services commissioned by multiple ganisations, BCCG is responsible f leading the commissioning care process, involving the local authity and other partners as appropriate. BCCGs named first point of contact f the commissioning of the children and young people s continuing care process is the Lead Nurse. The role of the named individual is to act as a point of contact f professionals from the community, acute tertiary settings wishing to discuss a child young person with possible continuing care needs. The Lead nurse is responsible f ensuring the sharing of relevant infmation and assessments (with the consent of the service user their parents/carers) and f attending key multi agency meetings i.e JAP/MAP panel with relevant infmation. They are responsible f the co-dination of transition from Children to Adult Services inviting relevant stakeholders to appropriate meetings. All partners are responsible f funding their own contributions to the continuing care package including sht breaks and social care in line with their statuty responsibility f care. Any package of care which BCCG agrees should be sustainable f the duration of the child young person s needs, should be integrated/aligned with other relevant services, such as primary care. Development process and Training Continuing Care Policy and Process f Children and Young People Page 17

18 Two wkshops were held on 9 th June and 14 th July 2015 to consult on BCCG Children s continuing Care processes and the draft National Framewk.- this infmation has been used to develop local processes. The wkshops were attended by all those who are involved in the complex children s cases locally i.e. Parents, Nurses, Service Managers, Nurse assesss, Social care wkers, LA colleagues and Adults CHC. Also a wider involvement came from other CCG s and Department of Health. Presentations were given by; Gareth James- Department of Health Mary Low Children s Continuing Care Melanie de La Fd- Adults Continuing Health Care National framewk and local policy were covered as well as the Decision Suppt Tool (DST) In the absence of a particular training programme to cover Children s Continuing Care, these wkshops were effective in infming those in the system of National and Local processes and also by enabling consultation around the framewk. Ideas towards improving the pathways and processes have helped to develop how we move fward with a me robust system and have played a part in the development of both National and Local policies. Continuing Care Policy and Process f Children and Young People Page 18

19 Definitions Adult continuing healthcare - (see NHS Continuing Healthcare) Assessment A multi-agency process in which the needs of a child young person and their family are identified and their impact on daily living and quality of life is evaluated. The nominated children and young people s health assess is responsible f undertaking a health assessment and collating existing assessments by local authity children s and young people s services on behalf of the commissioners to present a holistic picture of the child young person s continuing care needs. If there is no existing assessment, the nominated health assess should liaise with the appropriate professionals to instigate assessments by local authity children s and young people s services on behalf of the commissioners and then use these repts to infm the holistic assessment of the child young person s continuing care needs. Care Suppt provided to a child young person to enable him her to live as independently as possible, including anything done to help a child young person live with ill health, disability, physical frailty a learning difficulty, and to participate as fully as possible in family, school and community activities. This encompasses health, social care and education. Care plan A document agreed between the relevant care professionals and the child young person and their family, setting out the package of continuing care needed, and its intended outcomes. Children and young people s continuing care A package of continuing care needed over an extended period of time f children young people with continuing care needs that arise because of disability, accident illness, which cannot be met by universal specialist services alone. Children and young people s continuing care is likely to require services from health and local authity children s and young people s services. Clinical commissioning group (CCG) The 211 clinical commissioning groups are the local ganisations with responsibility f commissioning most NHS services. Every GP practice is a member of a local CCG, and each CCG has responsibility f anyone who is registered with one of their member practices, and anyone usually resident in the group s area who is not registered with any practice (a similar principle determined the responsibility of primary care trusts). A list and map of CCGs can be found at: Under section 3 of the NHS Act 2006, a CCG has a duty to arrange f the provision of health services to such extent as it considers necessary to meet the reasonable requirements of the persons f whom it has responsibility. Note that some services are not Continuing Care Policy and Process f Children and Young People Page 19

20 the responsibility of CCGs (e.g. services commissioned by NHS England, such as primary care and dentistry, services commissioned by other bodies, such as Public Health National England, public health services commissioned by local authities). The act sets requirements about how CCGs are established, and operate, and how they are held to account by NHS England in an annual perfmance assessment. CCGs have a range of additional statuty duties relating to how they carry out their commissioning function, set out in sections 14P to 14Z2 of the NHS Act Consent If a child who is under 16 does not have the capacity to give consent, someone with parental responsibility can consent f them, but that person must have the capacity to give consent. If one person with parental responsibility gives consent and another does not, the healthcare professionals can choose to accept the consent and perfm the treatment in most cases. If the people with parental responsibility disagree about what is in the child s best interests, the courts can make a decision. If a parent refuses to give consent to a particular treatment, this decision can be overruled by the courts if treatment is thought to be in the best interests of the child. If the local authity has reason to believe that the child is suffering likely to suffer significant harm, they could apply to the court under the Children Act 1989 f either: an emergency protection der on the basis that the significant harm would occur should the child not receive care; an interim care der if the harm likely harm could be attributed to the care given by the parents. Young people with SEND have the right to make decisions f themselves, when they reach the end of the academic year in which they turn 16, rather than their parents making decisions f them (although their family can continue to provide suppt if the young person agrees). The right of young people to make a decision is subject to their capacity to do so, as set out in the Mental Capacity Act See also the entry on Parental responsibility. Continuing care needs There are no clear definitions of continuing care needs but it is generally recognised that they include multiple health needs where care pathways require co-dination because of the complexity of service provision and input from local authity children s and young people s services. Continuing care pathway The continuing care pathway describes the journey undertaken by a child young person with possible continuing care needs from the point of referral through to the provision of a package of care. There are seven stages of this pathway which a child young person with possible continuing care needs will pass through. Designated medical officer / clinical officer The designated medical officer, clinical officer suppts the CCG in meeting its statuty responsibilities f children and young people with SEND by providing a point of contact f Continuing Care Policy and Process f Children and Young People Page 20

21 local partners, when notifying parents and local authities about children and young people they believe have, may have, SEN a disability, and when seeking advice on SEN disabilities. The officer provides a point of contact f local authities, schools and colleges seeking health advice on children and young people who may have SEN disabilities, and provides a contact ( contacts) f CCGs health providers so that appropriate notification can be given to the local authity of children under compulsy school age who they think may have SEN disabilities. The DMO DCO should have an appropriate level of clinical expertise to enable them to exercise these functions effectively, and is usually a paediatrician, but there is local flexibility f the role to be undertaken by a suitably competent nurse other health professional. Education, health and care plan At the heart of the new arrangements f children and young people with SEND introduced by the Children and Families Act 2014 is the concept of a single plan f each child with SEND, which covers their education, health and social care needs. A local authity must conduct an assessment of education, health and care needs when it considers that it may be necessary f special educational provision to be made f the child young person. CCGs and local authities will wk together to establish and recd the views, interests and aspirations of the parents and child young person; provide a full description of the child young person s special educational needs and any health and social care needs; establish outcomes across education, health and social care based on the child young person s needs and aspirations; specify the provision required and how education, health and care services will wk together to meet the child young person s needs and suppt the achievement of the agreed outcomes. The Code of Practice is the statuty guide to the EHC process and covers all the legal requirements and imptant good practice. Special educational needs and disability code of practice: 0 to 25 years. Statuty guidance f ganisations who wk with and suppt children and young people with special educational needs and disabilities (2014). Lead professional Where a child young person with continuing care needs requires suppt from me than one practitioner, the lead professional is someone who: acts as a single point of contact f the child young person and their family, serving as someone whom the child young person and their family can trust, and who is able to suppt them in making choices and in navigating their way through the system; Ensures that they get appropriate interventions when needed, which are well planned, regularly reviewed and effectively delivered; and reduces overlap and inconsistency among other practitioners. Evidence from practice suggests that the lead professional role is to effective frontline delivery of integrated services. It ensures that professional involvement is rationalised, co-dinated and Continuing Care Policy and Process f Children and Young People Page 21

22 communicated effectively, and results in a better experience f children, young people and their families involved with a range of agencies. Multi-agency decision-making fum / panel The multi-agency decision-making fum will comprise professionals from different disciplines, i.e. from both health commissioners and local authities. The fum will take into consideration the recommendations and proposed options f packages of continuing care. If a continuing care need is identified, it is f the health commissioners and the local authity to decide what services each will commission and fund. NHS Continuing Healthcare A package of ongoing care that is arranged and funded solely by the NHS where the individual has been found to have a primary health need as set out in the statuty guidance (as opposed to a need f local authity care). Such care is provided to an individual aged 18 over, to meet needs that have arisen as a result of disability, accident illness. Where an individual has a primary health need and is therefe eligible f NHS continuing healthcare, the NHS is responsible f providing all of that individual s assessed health and social care needs including accommodation, if that is part of the overall need. The full guidance can be found at NHS-funded nursing care The funding provided by the NHS to homes providing nursing to suppt the provision of nursing care by a registered nurse. Since 2007 NHS-funded nursing care has been based on a single band rate. In all cases individuals should be considered f eligibility f NHS continuing healthcare befe a decision is reached about the need f NHS-funded nursing care. Nominated children and young people s health assess A health practitioner experienced in children s health and skilled in the health assessment of children who leads on the assessment phase of the continuing care process. Following the completion of the assessment phase, the nominated children and young people s health assess will produce recommendations, including costed options ( where possible) f presentation to a multi-agency decision-making fum f them to reach a decision on whether continuing care is needed and, if so, what package of continuing care to provide. If a continuing care need is identified it is f health commissioners and the local authity to decide what services each will commission and fund. Package of continuing care A combination of resources, planning, co-dination and suppt designed to meet a child young person s assessed needs f continuing care. Parental responsibility As defined by the Children Act 1989 (see a person with parental responsibility f a child could be: the child s parents; the child s special guardian (under a special guardianship der); the child s legally appointed guardian Continuing Care Policy and Process f Children and Young People Page 22

23 a person named in a child arrangements der as a person with whom the child is to live; a local authity designated to care f the child (under a care der); a local authity person with an emergency protection der f the child. Personal health budget An amount of money allocated to meet a child young person s health and wellbeing needs. A personal health budget allows someone with a condition such as a long-term condition, learning disability, continuing healthcare mental health needs to have me choice, flexibility and control over the services and care they receive, enabling them to better meet their desired health outcomes. Responsible commissioner The ganisation that discharges the statuty duty to secure care f an individual. F health services, the duty is that of Sections 3 to 6 of the NHS Act 2006, and accompanying regulations. Most health services f an individual are usually commissioned by the CCG of which their GP practice is a member, but specialised services and health care f some specific groups is commissioned by NHS England. Public health services are usually commissioned by local authities Public Health England. F infmation on who has responsibility f making payments to providers, see Who Pays? Determining responsibility f payments to providers (August, 2013) Special educational needs and disability (SEND) The Children and Families Act 2014 states that a child young person has SEND if he she has a learning difficulty disability which calls f special educational provision to be made f him her. A child of compulsy school age a young person has a learning difficulty disability if he she: has a significantly greater difficulty in learning than the majity of others of the same age, has a disability which prevents hinders him her from making use of facilities of a kind generally provided f others of the same age in mainstream schools mainstream post-16 institutions. A child under compulsy school age has a learning difficulty disability if he she is likely to be within the above categies ( would be likely to be if no special educational provision were made). Post-16 institutions often use the term learning difficulties and disabilities (LDD). The term SEND is used in this Code across the 0-25 age range but includes LDD. Section 3 of the Children and Families Act 2014 introduced from September 2014 a new statuty framewk f how local authities and CCGs should wk together to ensure children and young people with SEND get the education, health and care services they need (see also Education, health and care plan in this glossary). The key points are described in Chapter 1 above. The full Act is available at: Continuing Care Policy and Process f Children and Young People Page 23

24 Specialised services specialised services are those less common interventions needed by a relatively small group of patients, which require a clinical team with very specific training and often, equipment, which it would be impractical to commission provide at a local level. These services are usually located in specialised hospital trusts that can recruit a team of staff with the appropriate expertise and enable them to develop their skills needed. Examples include Tier 4 Child & Adolescent Mental Health Services and specialist neuroscience services f children and young people, including neurosurgery. Most specialised services are commissioned by NHS England directly, but some elements of a specialised service may be commissioned by local CCGs, wk closely with CCG commissioned services. F infmation on all specialised services identified as such by NHS England, and how they are commissioned, see the Manual f Prescribed Specialised Services 2013/14 F me infmation on Specialised Services in general, see: Universal services Health services which are available to all of the population of England from birth, including primary care provided by GP practices, health visiting f new bn children, school nursing and Accident and Emergency services. Continuing Care Policy and Process f Children and Young People Page 24

25 Appendices Appendix A: NHS Continuing Healthcare and Continuing Care f Children - Clinical Eligibility Panel Appendix B: BCCG Children s Continuing Care Pathway diagram Appendix C: BCCG Children s Continuing Care Referral Fm Appendix C - BCCG Referral Fm Final.d Appendix D: BCCG Guidance f BCCG Children s Continuing Care Referral Fm Appendix D - BCCG Guidance f Compl Appendix E: BCCG Consent Fm Final - Appendix E Consent Fm.docx Appendix F: BCCG Decision Suppt Tool Appendix F - BCCG Decision Suppt To Appendix G: BCCG Equality Impact Assessment Fm Bccg_equality_and_ health_inequality_im Appendix H: Bedfd Bough Multi Agency Panel ( MAP ) TOR Appendix I : Central Bedfdshire Joint Allocation Panel ( JAP ) TOR Continuing Care Policy and Process f Children and Young People Page 25

26 APPENDIX A NHS Continuing Healthcare and Continuing Care f Children Clinical Eligibility Panel: Appendix A ToR CHC&CC Clinical Elig Continuing Care Policy and Process f Children and Young People Page 26

27 Appendix B BCCG Continuing Care Pathway diagram- shown below Appendix B Continuing Care Pathway Diagram Child young person identified with possible continuing care needs LN contacted to discuss if appropriate f Continuing Care application Glossary LN = Lead Nurse (BCCG) CC = Continuing Care DST = Decision Suppt Tool JAP = Joint Allocation Panel MAP = Multi Agency Panel LN requests referral fm completed Lead professional sends completed referral to LN, plus accompanying documents and consent Referral received and logged by LN No LN advises whether case appropriate f CC application Yes Case moves out of CC process. Referred to Ce Services if appropriate No LN completes checklist and gains consent to share infmation from legal guardian(s) Is Fast Track required due to urgent healthcare need? Yes LN collates relevant repts and infmation Multi-Agency meeting convened by LN to enable completion of DST Multi-Agency team agree proposals to meet identified needs with the younger person and their family Recommendations to be recded f presentation to JAP/MAP LN makes interim decision based on available infmation/ assessments Services commissioned and delivered Case presented to JAP/MAP f ratification on recommendations No Does JAP/MAP agree recommendations? Yes No Is recommendation that the case meets the threshold f CC and additional healthcare package is required? Panel requests further infmation/ assessments. If Health eligibility challenged, BCCG Clinical Eligibility panel case presented- Outcome shared to all agencies. Multi Agency Team complete CB = EHA and BB = MASH and make recommendations f onward referral where appropriate LN writes to family/carer confirming decision Yes LN writes to family confirming outcome and commissions any recommended Healthcare package (in partnership with the Local authity if appropriate.) Recommendations need to be aligned with BCCG commissioning responsibilities. LN to carry out first review at 3 months and subsequent reviews as agreed Decision is appealed against by family/carer Follow Bedfdshire Clinical Commissioning Group complaints procedure Continuing Care Policy and Process f Children and Young People Page 27

28 Appendix C BCCG Children and Young Peoples Continuing Care Referral Fm Notes f use: When completing this fm please complete all boxes in Bold Please ensure this fm remains passwd protected. When completed please contact BCCG Children s Department on Date of assessment received BCCG to complete Please note This fm will not be accepted unless the boxes marked bold are completed Recd details of child/young person being assessed Child/Young person s full name (first Date of Birth name/surname) Known as; Previous names Male NHS Number Home address Female Age Contact telephone number (please state who) Religion Immigration status Current address eg hospital other placement If in hospital/placement, please state date of admission If in hospital/placement, please state expected date of discharge (if applicable) Ethnicity White British Any other White Pakistani Background White Irish African Indian White & Asian Bangladeshi Any other Asian Background Continuing Care Policy and Process f Children and Young People Page 28

29 White & Black Caribbean White & Black African Child s first language Caribbean Any other mixed Background Chinese Any other Black Background Any other Ethnic Not given Group Parents first language Child/Young Person s health issues/current condition/diagnosis Does this case require fast tracking? Details of any special requirements (f child and /parents) i.e. is an interpreter signer required. ASSESSMENT INFORMATION MANDATORY: Please complete Parent/Carer Infmation on this page. Recd details of child/young person being assessed People present at completion of Referral Fm Reason f the request? ie change in child s health condition. Child s Health Condition The child/young person s condition is currently stable unstable rapidly deteriating end of life Other (please specify) Continuing Care Policy and Process f Children and Young People Page 29

30 Parent Carer infmation Name Address Relationship to the child Name Parental responsibility Address Relationship to the child Parental responsibility Is this child Child in need Looked After Child? Please give legal status Consent f Continuing Care Assessment to be carried out Parent/Carer Name Date Signature Home Situation Carers assessment completed-?outcome Continuing Care Policy and Process f Children and Young People Page 30

31 Current Care Package (to include name of Providers and level of suppt) Social care Health Education Provider/Service (s) Number of hours How delivered Cost Proposed increase in Care Package (if appropriate) Social Care Health Education Provider/Service Number of hours How delivered Cost Details of person(s) completing Referral Fm Name Contact Tel no. Job title Role Address Organisation Lead Professional s address Name of Lead Professional (where identified) Lead Professional s contact no Continuing Care Policy and Process f Children and Young People Page 31

32 Multi-Agency Professionals wking with child and young person and family GP Details Contact Details Tel: Nursery/Educational setting Details Tel: Acute Paediatrician Details Tel: Community Paediatrician Details Tel: Social Wker Details Tel: Health Visit Details Tel: School Nurse Details Tel: Therapist Details Tel: Service Details Tel: Checked by Manager/Supervis Name Signed Post Referrer s Details Name/Designation Contact details Date Continuing Care Policy and Process f Children and Young People Page 32

33 Appendix D BCCG GUIDANCE FOR COMPLETION OF THE CONTINUING CARE REFERRAL FORM Complete all details in each section f the first four pages of the Referral Fm. It is imptant that names and contact details of all professionals involved in the child s care are detailed on page 4 as the Continuing Care Assess will need to make contact to collate infmation relating to their health needs. Please also ensure that parents are aware the Referral is being made to the BCCG Lead Nurse f the Continuing Care team and consent will need to be obtained by them befe the assessment can be undertaken. Please include any infmation that will suppt us with the completion of the Continuing Care assessment : Ce Assessment Crespondence from medical professionals Statement of Educational Needs/Education and Healthcare (SEN/ EHC) Plan Care Plans from the Provider Person Centred Plan Incident Data Risk Assessments It is always helpful to send as much infmation as you have available so we can make an infmed decision about assessment. NEXT STEPS Pri to sending the Referral into the Continuing Care team, if a Social Wker is not allocated to the child and sht breaks a homecare package is required; please make a referral to the MASH to request Social Care suppt. An allocated Social Wker will need to be engaged with the Continuing Care assessment. If the team receive an incomplete Referral, this will be returned to the Referrer f completion. If a Continuing Care assessment will be undertaken, the Referrer will be advised of the Assess undertaking this so a meeting can be co-dinated. Continuing Care Policy and Process f Children and Young People Page 33

34 Appendix E BCCG CONSENT FORM Child s Name Date of Birth Address Home Telephone Contact Number Name of School and Contact Name and Address of GP Continuing Care Policy and Process f Children and Young People Page 34

35 I hereby give consent f the Children and Young People s Continuing Care Team to gather infmation about my child in the following ways: Yes No 1 Obtaining repts from the school 2 Obtaining repts from the clinicians involved in my child s care. 3 To contact the GP 4 Hospital (name of Consultant and hospital) 5 Social Services (name of Social Wker) 6 Contact the Educational Psychologist. 7 Other (list as appropriate) I do not give consent (please state reason) Next of Kin Signed Name Referrer/Assess Signed Name Date Relationship to Child Date Job Title Continuing Care Policy and Process f Children and Young People Page 35

36 Appendix F - BCCG Decision Suppt Tool Child and family details Child s name Date of birth NHS Number Address Telephone number Mother s name Father s name First language Family Does any other member of the family have health service needs? Communication Is an interpreter needed? How can professionals best communicate with the child? Date referred f assessment Clock start Date of initial needs assessment Referred by Give referring professional and provider ganisation and relevant contact details Responsible CCG (CCG of which the child young person s GP is a member) Siblings Any issues relating to the child young person s brothers sisters which should be taken into account Are siblings involved in care provision? Child / young person Family circumstances Family suppt What kind of help is available in the family s circle of friends and relations? Are there any other ganisations groups that Continuing Care Policy and Process f Children and Young People Page 36

37 suppt the family/carer s family? Summary of parents /carer s occupation, employment/shift patterns. Effect of the child/young person s condition on the parent/carer s ability to wk. Sht breaks Details - including name and address of carer provider, and frequency Housing Owned rented? Adequacy f the child s/family s/carer s family s needs? Any adaptations required? Transpt Is the family/carer s family reliant on public transpt? Accessing hospital appointments, etc. Recreation and leisure Is the child/young person able to choose leisure activities? What is required to enable the child/young person to access leisure activities? What are their interests hobbies? Are the recreational needs of siblings and other family/carer s family members being met? Continuing Care Policy and Process f Children and Young People Page 37

38 Education and learning Name of nursery, school college attending Is the child/young person able to access an appropriate educational setting, either full parttime? Special Educational Needs Do they have a statement of SEN an Education, Health and Care Plan? Education and learning What additional suppt reasonable adjustments are required in that setting? If the child/young person is too ill to access a setting, what other provision is in place to ensure continuity of learning? Education Team around the child Health Professionals Name, telephone number and location of the following where relevant: registered GP all consultants Designated Medical Health Officer f SEND community paediatrician psychologist psychiatrist community children s nurse specialist nurse (e.g. f epilepsy). Nurse consultant CAMHS nurse named ward nurse health visit school nurse district nurse social wker occupational therapist speech and language therapists Continuing Care Policy and Process f Children and Young People Page 38

39 physiotherapist other therapists teacher sht break services lead professional interpreter. Medical histy Dates of significant health events/current health status. Clinical details Medication Current medication; allergies. Equipment disposable Type, manufacturer/supplier ; distribut / quantity and frequency etc. Collection method. Equipment permanent Type, manufacturer/ supplier; distribut / quantity, maintenance. Treatment / care needs Interventions; who provides and monits the service; care plans. Symptom management and pain control. What is the 24-hour daily care routine? How are the child/young person and family/carers suppted? Does the family have adequate infmation on the child/young person s condition/future? What is the 24-hour daily care routine? Competencies required to care f the child/young person. Is there a lead professional, and is this wking well? Continuing Care Policy and Process f Children and Young People Page 39

40 Views and aspirations (section A of EHC plan) This first section should also of course include the views and aspirations of the child young person and their family this is the maj element of Section A of the EHC plan, and should have a crespondingly prominent position in any continuing care assessment. Chapter 2 provides a me detailed description of the key issues which should be considered in engaging with the child young person and their family. In particular, this section should consider: The child/young person s issues, concerns, anxieties. The child/young person s preferences about care delivery. The family s preferences about care delivery. Emotional and suppt needs Assessment should consider the emotional suppt needs of a child, young person and their family. What is the effect of the child/young person s condition on each member of the family? What times of the day/events are stressful? How does the family cope? Who does the family call on f suppt at these times? Are there times when the child young person need particular suppt? How do they communicate as a family? What is the child/young person s understanding of his/her condition? What understanding do siblings have of the child/young person s condition? Is an assessment by the child and adolescent mental health service required? Outcomes 1. The assessment of a child s continuing care needs must consider the outcomes necessary to enable the child young person to get the best from life, and outcomes relating to transition (where the child is 14 years older), identifying unmet need. 2. They should be specific, deliverable and linked directly to the child s wishes. They should include where appropriate, outcomes f transition, through key changes in a child young person s life, such as changing schools, moving from children s to adult care and/ from paediatric services to adult health, moving on from further education to adulthood. 3. Key issues would include: Maintaining a safe environment. Communicating. Continuing Care Policy and Process f Children and Young People Page 40

41 Breathing. Eating and drinking. Elimination. Personal cleaning and dressing. Controlling body temperature. Mobilising. Playing. Learning. Expressing individuality. Sleeping. Employment Independence Further education End of life. Pain management Continuing Care Policy and Process f Children and Young People Page 41

42 Care domains 4. Health assesss should consider the needs of the child young person across the following 10 domains of care. Care has been taken to avoid duplicating needs in two separate domains. However, assesss should consider how different but inter-related needs across me than one domain can complicate the child young person s overall care needs and result in sufficient complexity, intensity risk to demonstrate continuing care needs. Examples of this might include the relationship between skin integrity and continence, cognitive impairment and behaviour and/ communication. 5. It is essential that clear evidence is obtained to suppt assessments in the relevant domains, and that this evidence is recded as part of the continuing care assessment, and included in any subsequent care plan. 6. As a rule of thumb, a child is likely to have continuing care needs if assessed as having a severe priity level of need in at least one domain of care, a high level of need in at least three domains of care. 7. The level of need in a single domain may not on its own indicate that a child young person has a continuing care need, but will contribute to a picture of overall care needs across all domains. Levels of need are relative to each other as well as to those in other care domains. It is not possible to equate a number of incidences of one level with a number of incidences of another level that needs assessed as moderate in two domains are the equivalent of one high level of need, f example. In presenting recommendations and costed options to a multi-agency fum, nominated children and young people s health assesss should consider the level of need identified in all care domains in der to gain the overall picture. 8. These guidelines should not be used in a restrictive way. Nominated children and young people s health assesss should be mindful that even if the child young person is assessed as not having continuing care needs, they may require other healthcare input from universal services community children/young person s nursing other specialist services. Continuing Care Policy and Process f Children and Young People Page 42

43 Breathing Describe the child young person s specific needs relevant to this domain. Continuing Care Policy and Process f Children and Young People Page 43

44 Breathing - assesss should indicate the level of need Description Breathing typical f age and development. Routine use of inhalers, nebulisers, etc.; care plan management plan in place to reduce the risk of aspiration. Episodes of acute breathlessness, which do not respond to self-management and need specialist-recommended input; intermittent continuous low-level oxygen therapy is needed to prevent secondary health issues; supptive but not dependent non-invasive ventilation which may include oxygen therapy which does not cause life-threatening difficulties if disconnected; child young person has profoundly reduced mobility other conditions which lead to increased susceptibility to chest infection (Gastroesophageal Reflux Disease and Dysphagia); requires daily physiotherapy to maintain optimal respiraty function; requires al suction (at least weekly) due to the risk of aspiration and breathing difficulties; has a histy within the last three to six months of recurring aspiration/chest infections. Requires high flow air / oxygen to maintain respiraty function overnight f the majity of the day and night; is able to breath unaided during the day but needs to go onto a ventilat f supptive ventilation. The ventilation can be discontinued f up to 24 hours without clinical harm; requires continuous high level oxygen dependency, determined by clinical need; has a need f daily al pharyngeal and/ nasopharyngeal suction with a management plan undertaken by a specialist practitioner; stable tracheostomy that can be managed by the child young person only requires minimal and predictable suction / care from a carer. Has frequent, hard-to-predict apnoea (not related to seizures); severe, life-threatening breathing difficulties, which require essential al pharyngeal and/ nasopharyngeal suction, day night; Level of need No additional needs Low Moderate High Severe Continuing Care Policy and Process f Children and Young People Page 44

45 a tracheostomy tube that requires frequent essential interventions (additional to routine care) by a fully trained carer, to maintain an airway; requires ventilation at night f very po respiraty function; has respiraty drive and would survive accidental disconnection, but would be unwell and may require hospital suppt. Unable to breath independently and requires permanent mechanical ventilation; has no respiraty drive when asleep unconscious and requires ventilation, disconnection of which could be fatal; a highly unstable tracheostomy, frequent occlusions and difficult to change tubes. Priity Continuing Care Policy and Process f Children and Young People Page 45

46 Eating and drinking Describe the child young person s specific needs relevant to this domain. Continuing Care Policy and Process f Children and Young People Page 46

47 Eating and drinking assesss should indicate the level of need Description Able to take adequate food and drink by mouth, to meet all nutritional requirements, typical of age. Some assistance required above what is typical f their age; needs supervision, prompting and encouragement with food and drinks above the typical requirement f their age; needs suppt and advice about diet because the underlying condition gives greater chance of non-compliance, including limited understanding of the consequences of food drink intake; needs feeding when this is not typical f age, but is not time consuming not unsafe if general guidance is adhered to. Needs feeding to ensure safe and adequate intake of food; feeding (including liquidised feed) is lengthy; specialised feeding plan developed by speech and language therapist; unable to take sufficient food and drink by mouth, with most nutritional requirements taken by artificial means, f example, via a non-problematic tube feeding device, including nasogastric tubes. Faltering growth, despite following specialised feeding plan by a speech and language therapist and/ dietician to manage nutritional status,. dysphagia, requiring a specialised management plan developed by the speech and language therapist and multi-disciplinary team, with additional skilled intervention to ensure adequate nutrition hydration and to minimise the risk of choking, aspiration and to maintain a clear airway (f example through suction); problems with intake of food and drink (which could include vomiting), requiring skilled intervention to manage nutritional status; weaning from tube feeding dependency and / recognised eating disder, with selfimposed dietary regime self-neglect, f example, anxiety and/ depression leading to intake problems placing the child/young person at risk and needing skilled intervention; problems relating to a feeding device (e.g. nasogastric tube) which require a risk-assessment and management plan undertaken by a speech and language therapist and multidisciplinary team and requiring regular review and reassessment. Despite the plan, there remains a risk of choking and/ aspiration. The majity of fluids and nutritional requirements are routinely taken by intravenous means. Level of need No additional needs Low High Severe Moderate Continuing Care Policy and Process f Children and Young People Page 47

48 Mobility Describe the child young person s specific needs relevant to this domain. Continuing Care Policy and Process f Children and Young People Page 48

49 Mobility - assesss should indicate the level of need Description Mobility typical f age and development. Able to stand, bear their weight and move with some assistance, and mobility aids. moves with difficulty (e.g. unsteady, ataxic); irregular gait. Difficulties in standing moving even with aids, although some mobility with assistance. sleep deprivation (as opposed to wakefulness) due to underlying medical related need (such as muscle spasms, dystonia), occurring three times a night, several nights per week; unable to move in a way typical f age; cared f in single position, a limited number of positions (e.g. bed, supptive chair) due to the risk of physical harm, loss of muscle tone, tissue viability, pain on movement, but is able to assist. Unable to move in a way typical f age; cared f in single position, a limited number of positions (e.g. bed, supptive chair) due to the risk of physical harm, loss of muscle tone, tissue viability, pain on movement; needs careful positioning and is unable to assist needs me than one carer to reposition transfer; at a high risk of fracture due to po bone density, requiring a structured management plan to minimise risk, appropriate to stage of development; involuntary spasms placing themselves and carers at risk; extensive sleep deprivation due to underlying medical/mobility related needs, occurring every one to two hours (and at least four nights a week). Completely immobile and with an unstable clinical condition such that on movement transfer there is a high risk of serious physical harm; positioning is critical to physiological functioning life. Level of need No additional needs Low Moderate High Severe Continuing Care Policy and Process f Children and Young People Page 49

50 Continence elimination Describe the child young person s specific needs relevant to this domain. Continuing Care Policy and Process f Children and Young People Page 50

51 Continence elimination - assesss should indicate the level of need Description Continence care is routine and typical of age. Incontinent of urine but managed by other means, f example, medication, regular toileting, pads, use of penile sheaths; is usually able to maintain control over bowel movements but may have occasional faecal incontinence. Has a stoma requiring routine attention, doubly incontinent but care is routine; self-catheterisation; difficulties in toileting due to constipation, irritable bowel syndrome; requires encouragement and suppt. Continence care is problematic and requires timely intervention by a skilled practitioner trained carer; intermittent catheterisation by a trained carer care wker; has a stoma that needs extensive attention every day. requires haemodialysis in hospital to sustain life. Requires dialysis in the home to sustain life. Level of need No additional needs Low Moderate High Severe Continuing Care Policy and Process f Children and Young People Page 51

52 Skin and tissue viability Interpretation point: where a child young person has a stoma, only the management of the stoma itself as an opening in the tissue should be considered here (i.e. a tracheostomy should only be considered here where there are issues relating to the opening; the use of the tracheostomy to aid breathing, and its management should be considered under Breathing.) Describe the child young person s specific needs relevant to this domain. Continuing Care Policy and Process f Children and Young People Page 52

53 Skin and tissue viability - assesss should indicate the level of need Description No evidence of pressure damage a condition affecting the skin. Evidence of pressure damage a min wound requiring treatment; skin condition that requires clinical reassessment less than weekly; well established stoma which requires routine care; has a tissue viability plan which requires regular review. Open wound(s), which is (are) responding to treatment; active skin condition requiring a minimum of weekly reassessment and which is responding to treatment; high risk of skin breakdown that requires preventative intervention from a skilled carer several times a day, without which skin integrity would break down; high risk of tissue breakdown because of a stoma (e.g. gastrostomy, tracheostomy, colostomy stomas) which require skilled care to maintain skin integrity. Open wound(s), which is (are) not responding to treatment and require a minimum of daily moniting/reassessment; active long-term skin condition, which requires a minimum of daily moniting reassessment; specialist dressing regime, several times weekly, which is responding to treatment and requires regular supervision. Life-threatening skin conditions burns requiring complex, painful dressing routines over a prolonged period. Level of need No additional needs Low Moderate High Severe Continuing Care Policy and Process f Children and Young People Page 53

54 Communication Describe the child young person s specific needs relevant to this domain. Continuing Care Policy and Process f Children and Young People Page 54

55 Communication - assesss should indicate the level of need Description Able to understand communicate clearly, verbally non-verbally, within their primary language, appropriate to their developmental level. The child/young person s ability to understand communicate is appropriate f their age and developmental level within their first language. Needs prompting assistance to communicate their needs. Special efft may be needed to ensure accurate interpretation of needs, may need additional suppt visually either through touch with hearing. Level of need No additional needs Low Family/carers may be able to anticipate needs through non-verbal signs due to familiarity with the individual. Communication of emotions and fundamental needs is difficult to understand interpret, even when prompted, unless with familiar people, and requires regular suppt. Family/carers may be able to anticipate and interpret the child/ young person s needs due to familiarity. suppt is always required to facilitate communication, f example, the use of choice boards, signing and communication aids. ability to communicate basic needs is variable depending on fluctuating mood; the child/young person demonstrates severe frustration about their communication, f example, through withdrawal. Even with frequent significant suppt from family/carers and professionals, the child young person is rarely able to communicate basic needs, requirements ideas. Moderate High Continuing Care Policy and Process f Children and Young People Page 55

56 Drug therapies and medication Describe the child young person s specific needs relevant to this domain. Continuing Care Policy and Process f Children and Young People Page 56

57 Drug therapies and medication assesss should indicate the level of need Description Medicine administered by parent, carer, self, as appropriate f age. Requires a suitably trained family member, fmal carer, teaching assistant, nurse appropriately trained other to administer medicine due to age non-compliance type of medicine; route of medicine; and/ site of medication administration Requires administration of medicine regime by a registered nurse, fmal employed carer, teaching assistant family member specifically trained f this task, appropriately trained others; moniting because of potential fluctuation of the medical condition that can be non-problematic to manage; sleep deprivation due to essential medication management occurring me than once a night (and at least twice a week). Drug regime requires management by a registered nurse at least weekly, due to a fluctuating and/ unstable condition; sleep deprivation caused by severe distress due to pain requiring medication management occurring four times a night (and four times a week). requires moniting and intervention f autonomic stming episodes. Has a medicine regime that requires daily management by a registered nurse and reference to a medical practitioner to ensure effective symptom management associated with a rapidly changing/deteriating condition; extensive sleep deprivation caused by severe intractable pain requiring essential pain medication management occurring every one to two hours requires continuous intravenous medication, which if stopped would be life threatening (e.g. epoprostenol infusion). Has a medicine regime that requires at least daily management by a registered nurse and reference to a medical practitioner to ensure effective symptom and pain management associated with a rapidly changing/deteriating condition, where one-to-one moniting of symptoms and their management is essential. Level of need No additional needs Low Moderate High Severe Priity Continuing Care Policy and Process f Children and Young People Page 57

58 Psychological and emotional needs (beyond what would typically be expected from a child young person of their age) Describe the child young person s specific needs relevant to this domain. Continuing Care Policy and Process f Children and Young People Page 58

59 Psychological and emotional needs (beyond what would typically be expected from a child young person of their age) assesss should indicate the level of need Interpretation point: a separate domain considers Challenging Behaviour, and assesss should avoid double counting the same need. Description Psychological emotional needs are apparent but typical of age and similar to those of peer group. Periods of emotional distress (anxiety, mildly lowered mood) not dissimilar to those typical of age and peer group, which subside and are self-regulated by the child/young person, with prompts/ reassurance from peers, family members, carers and/ staff within the wkfce. Requires prompts significant suppt to remain within existing infrastructure; periods of variable attendance in school/college; noticeably fluctuating levels of concentration. Self-care is notably lacking (and falls outside of cultural/peer group nms and trends), which may demand prolonged intervention from additional key staff; self-harm, but not generally high risk; Evidence of low moods, depression, anxiety periods of distress; reduced social functioning and increasingly solitary, with a marked withdrawal from social situations; limited response to prompts to remain within existing infrastructure (marked deteriation in attendance/attainment / deteriation in self-care outside of cultural/peer group nms and trends). Rapidly fluctuating moods of depression, necessitating specialist suppt and intervention, which have a severe impact on the child/young person s health and well-being to such an extent that the individual cannot engage with daily activities such as eating, drinking, sleeping which place the individual others at risk; acute and/ prolonged presentation of emotional/psychological deregulation, po impulse control placing the young person others at serious risk, and/ symptoms of serious mental illness that places the individual others at risk; this will include high-risk, self-harm. Level of need No additional needs Low Moderate High Severe Continuing Care Policy and Process f Children and Young People Page 59

60 Seizures Describe the child young person s specific needs relevant to this domain. Continuing Care Policy and Process f Children and Young People Page 60

61 Seizures assesss should indicate the level of need Description No evidence of seizures. Histy of seizures but none in the last three months; medication (if any) is stable; Occasional absent seizures and there is a low risk of harm. Occasional seizures including absences that have occurred with the last three months which require the supervision of a carer to minimise the risk of harm; up to three tonic-clonic seizures every night requiring regular supervision. Tonic-clonic seizures requiring rescue medication on a weekly basis; 4 me tonic-clonic seizures at night. Severe uncontrolled seizures, occurring at least daily. Seizures often do not respond to rescue medication and the child young person needs hospital treatment on a regular basis. This results in a high probability of risk to his/her self. Level of need No additional needs Low Moderate High Severe Continuing Care Policy and Process f Children and Young People Page 61

62 Challenging behaviour Describe the child young person s specific needs relevant to this domain. Continuing Care Policy and Process f Children and Young People Page 62

63 Challenging behaviour assesss should indicate the level of need Description No incidents of behaviour which challenge parents/carers/staff. Some incidents of behaviour which challenge parents/carers/staff but which do not exceed expected behaviours f age stage of development and which can be managed within mainstream services (e.g. early years suppt, health visiting, school). Occasional challenging behaviours which are me frequent, me intense me unusual than those expected f age stage of development, which are having a negative impact on the child and their family / everyday life. Regular challenging behaviours such as aggression (e.g. hitting, kicking, biting, hair-pulling), destruction (e.g. ripping clothes, breaking windows, throwing objects), self-injury (e.g. head banging, self-biting, skin picking), other behaviours (e.g. running away, eating inedible objects), despite specialist health intervention and which have a negative impact on on the child and their family / everyday life. Frequent, intense behaviours such as aggression, destruction, self-injury, despite intense multi-agency suppt, which have a profoundly negative impact on quality of life f the child and their family, and risk exclusion from the home school. Challenging behaviours of high frequency and intensity, despite intense multiagency suppt, which threaten the immediate safety of the child those around them and restrict every day activities (e.g. exclusion from school home environment). Level of need No additional needs Low Moderate High Severe Priity Continuing Care Policy and Process f Children and Young People Page 63

64 Recd the ratings from across the care domains in this table: Care Domain P S H M L N Breathing Eating & Drinking Mobility Continence and elimination Skin and tissue viability Communication Drug Therapies and medicines Psychological and Emotional Needs (beyond what would typically be expected from a child young person of their age) Seizures Challenging Behaviour Totals Has the Need been met Continuing Care Policy and Process f Children and Young People Page 64