Southend, Essex & Thurrock Continuing Care Policy for Children and Young People

Southend, Essex & Thurrock Continuing Care Policy for Children and Young People (Working on behalf of Basildon & Brentwood Clinical Commissioning Group, Castlepoint & Rochford Clinical Commissioning Group, Mid Essex Clinical Commissioning Group, North East Essex Clinical Commissioning Group, Southend Clinical Commissioning Group, Thurrock Clinical Commissioning Group & West Essex Clinical Commissioning Group.) 1

Summary: This policy sets out the operational management of Children and Young People s Continuing Care for NHS Essex Clinical Commissioning Groups delivered by NHS Essex Commissioning Support Unit in partnership with Essex County Council, Southend Borough Council and Thurrock Council. This Policy should be read in conjunction with: Aiming High for Disabled Children Better Care, Better Lives (2008) Coughlan Judgment (1999) Disability Discrimination Act 1995 (amended 2005) Early Support Programme Every Child Matters (2005) Every Disabled Child Matters Equality Act 2010 Equality and diversity agenda Equity and excellence: Liberating the NHS ( 2010) Freedom of Information Act 1998 (amended 2000) Gillick v West Norfolk and Wisbech Area Health Authority (1985) Haringey Judgement (2005) Health and Social Care Act 2012 Improving quality of life for people with long term conditions ( March 2013) Integrated Care and Support: Our Shared Commitment (March 2013) National Framework for Children and Young People s Continuing Care (March 2010) Philosophy of Clinical Governance, providing evidence for compliance with the requirements of the Standards for Better Health of the Department of Health and the NHS Litigation Authority Risk Management Standard for PCTs Race Relation Act 2000 Relevant articles of the Human Rights Act 1998 Sex Discrimination Act 1975 (amended 2003) The Children s Act 1989 and 2004 The Green Paper Support and aspiration: A new approach to special educational needs and disability (March 2011) The National Service Framework for Children and Young People (2004)Together from the Start (2003)The National Health Service Act 2006 The National Health Service (Nursing Care in Residential Accommodation) (Amendment)(England) Directions 2009 The NHS Continuing Healthcare (Responsibilities) Directions 2009Who Pays? Establishing The Responsible Commissioner 2007 (and amendments)all Age Disability Strategic Framework (Essex County Council) March 2013 2

RESPONSIBLE DIRECTOR: EFFECTIVE DATE: Stewart McArthur STATUS: Draft June 2013 REVIEW DATE: June 2014 POLICY: Southend, Essex & Thurrock Continuing Care Policy for Children and Young People AUTHOR: Carolyn Lowe, Head of Children and Young People s Continuing Care Commissioning POLICY APPROVAL POLICY APPROVAL BODY NAME DESIGNATION SIGNATURE DATE West Essex Clinical Commissioning Group Mid Essex Clinical Commissioning Group North East Essex Clinical Commissioning Group Southend Clinical Commissioning Group Thurrock Clinical Commissioning Group Castlepoint & Rochford Clinical Commissioning Group Basildon & Brentwood Clinical Commissioning Group Southend Borough Council Essex County Council Thurrock Council Central Eastern Commissioning Support Unit 3

CONTENTS CONTENT PAGE NUMBER Continuing Care Policy For Children And Young People; Introduction 5 What is Children and Young People s Continuing Care 5 The National Framework 6 Responsibility 8 Children and Young People s Continuing Care Pathway 9 Referral eligibility Criteria 9 Assessment Phase 10 Decision Phase 11 Provision Phase 12 Fast Track 14 Personalisation 14 Review 15 Dispute Resolution 16 Organisational Disputes Process 16 Panel Arrangements 17 Appeals Procedure 17 Monitoring of Care Providers 19 Transition to adult services 20 Safeguarding 21 Equality Impact Assessment 22 Finance 22 Appendices 23 4

CONTINUING CARE POLICY FOR CHILDREN AND YOUNG PEOPLE INTRODUCTION This document describes the policy by which children and young people in hospital or in the community are assessed using the criteria established by the National Framework on Children s and Young People s Continuing Care (2010) 1. This Children s Continuing Care Policy covers the continuing care health needs for children and young people who require additional support that is not available through universal or specialist healthcare services. This policy supports partnership working between NHS Essex Commissioning Support Unit, NHS Essex Clinical Commissioning Groups, Essex County Council, Southend Borough Council and Thurrock council. WHAT IS CHILDREN AND YOUNG PEOPLE S CONTINUING CARE? Continuing Care is a general term that describes a tailor made package of care which is required over an extended period of time for children and young people with complex health needs which arise because of disability, accident or illness (including life limiting or life threatening conditions). Continuing Care may be provided for children and young people whose health needs cannot be met by existing universal, targeted or specialist health services. The aim of the care package is to support the child/young person s parents or carers to manage their child/young person s care at home and/or in other settings. It may require the provision of services from the NHS, social care, education, or other organisations to enable the person to function in the community. Children and Young People s continuing care is different from NHS Continuing Healthcare for adults. It is care provided in a child and family centred way, either in the family home, at school or college, or in residential care settings, including residential special schools. The needs of children and young people are different to those of adults. This is because of their right to appropriate education provision for children of compulsory school age as evidenced within a child s statement and the dependency of children on their parents as carers as their main care givers. This means families will require support from health, education and social care provided through joint working between the agencies but with each agency being responsible for meeting the cost of their respective contribution to the care package. Statutory social care services for children and young peoples are provided under the Children Act 1989, following an assessment under the Framework for the Assessment of Children in Need and their Families. Each local authority providing children and young people services set its own eligibility criteria for social care and therefore, children and families experience different thresholds too. In contributing to a continuing care package for 1 DH (2010) National Framework for children and young People s continuing care 5

a child/young person it is acknowledged that Local Authorities are only able to legally fund provision within the remit to provide under the National Assistance Act 1948 2. Both the Children s National Service Framework (NSF) (2004) 3, the Framework for the Assessment of Children in Need and more recently, guidance for children under 3 years old who are disabled or have complex health needs advocates multiagency comprehensive needs assessment and joint planning of care with integrated provision to help maximise children and young people s development and achievement in life. Likewise, the Disability Discrimination Act (2005) 4 makes it unlawful to discriminate against disabled children with a physical or mental impairment where that has a substantial long-term adverse effect on their ability to carry out normal day-to-day activities. It is therefore the principal that assessment of need is carried out in partnership with all relevant agencies. As established within the Children s and Young People s Continuing Care Framework (2010) the NHS is responsible for leading the Children and Young Peoples continuing care process. NHS Essex Clinical Commissioning Groups are therefore responsible for the establishment and management of governance which facilitates the commissioning of bespoke packages of care with the Local Authority and other partners. NHS Essex Clinical Commissioning Groups have commissioned NHS Essex Commissioning Support Unit to undertake these commissioning responsibilities on their behalf. NHS Essex Commissioning Support Unit are therefore responsible for ensuring that resources are transformed into continuing care provision in a flexible way. NHS Essex Commissioning Support Unit s delivery of bespoke provision is dependent on working in partnership with organisations/ services to enable the child or young person to function optimally within their family, school, and community or care setting with each partner organisation funding their agreed contribution as in line with their statutory functions. This policy sets out the framework for Partnership working in the delivery of continuing care to children and young people. THE NATIONAL FRAMEWORK The National Framework for Children and Young people s Continuing Care was published by the Department of Health in March 2010 to provide guidance in dealing with the continuing care needs of children and young people who are under the age of 18 (up until their 18 th birthday). This framework sets out an equitable and transparent process for determining eligibility, assessing, deciding and agreeing bespoke packages of care. Children and Young People may be eligible to receive continuing care funding if their needs arise from congenital conditions, long-term deteriorating conditions, accidents or the after effects of serious illness or injury. They will typically have problems with one or more of the 2 National Assistance Act 1948 3 DH (2004) National Service Framework for Children, Young People and Maternity Services: The mental health and psychological wellbeing of children and young people 4 Disability Discrimination Act (2005) 6

following: challenging behaviour, communication, mobility, nutrition, continence or elimination, skin and tissue viability, breathing, drug therapies and medicines, psychological and emotional needs, or seizures. Assessment of these needs and the delivery of bespoke packages of care to meet them will take place alongside services to meet an individual needs holistically and will include education and social care. The principles and core values guiding the assessment of children and young people s continuing care are: Children and young people s continuing care assessment and subsequent decisions about care are needs led, not based on diagnosis alone, and acknowledge layers of complexity. A comprehensive, multi professional assessment and subsequent decisions about provision of care are made in context of the child s or young person s social care, education and family needs and are as joined up as possible. The assessment and provision of children and young people s continuing care and assessments are available in a variety of settings. The continuing care assessment draws on earlier assessments that the child or young person may have already undergone. Assessment of children and young people for continuing care considers the safety of the care to be provided and takes account of safeguarding policies and legislation. Decisions about the provision of continuing care supports and enhances the care that parents/family are giving already to the child or young person, enables them to develop meaningful relationships with the whole family through provision of consistent and skilled support and takes account of the family circumstances and the child s and family s preferences. Assessment of children and young people s needs for continuing care considers whether there is further potential for rehabilitation and how the outcome of any treatments or medication may affect on-going needs. The risks and benefits to the child or young person of a change of location or support (including funding implications) are considered carefully before any move or change is confirmed. Decisions about continuing care are fair, culturally sensitive, client-centred and do not marginalise a need because it is being managed well by the family or carers. Regular reviews are built into the process to promote the continued delivery of care packages that meet individual need. The National Framework reinforces the fact that: NHS continuing care for children and young people may be for a finite period as a person s condition may alter over time. Regular reviews are therefore built into the process to ensure that the care package continues to meet the individual s needs. The reasons given for a decision on eligibility should not be based on: 7

The setting of the care The ability of the care provider to manage care The use (or not) of NHS employed staff to provide care The need for / presence of specialist staff in care delivery The existence of other NHS-funded care, or The provision of other services /funding Eligibility must be based on the level of need. Local Authorities should not be required to provide services beyond those they can legally provide under Section 21 of the National Assistance Act 1948. The principal for funding is based on the Coughlan judgement 5 which determines the legal boundary between what constitutes social care and health funding. Individuals and their family/carers need to understand the process for assessment and provision of continuing care and to participate wherever possible. RESPONSIBILITY In delivering this process the lead NHS organisation determined as the Responsible Commissioner as determined by the Department of Health Responsible Commissioner Guidance 6 is accountable for establishing and managing governance arrangements for the Children And Young People s Continuing Care Process. In this instance NHS Essex Commissioning Support Unit lead on this process on behalf of NHS Essex Clinical Commissioning Groups. The key principles of this process are: implementing and maintaining good practice; ensuring that quality standards are met and sustained; providing training and development opportunities for practitioners, including supervision; identifying and acting on issues arising in the provision of children and Young people s continuing care; promoting awareness of the Framework; and ensuring flexibility to shape strategic commissioning arrangements and the design of services in instances where a consistent and transparent children and young people s continuing care process highlights repeated issues, e.g. several children with the same continuing care needs. 5 High Court of Justice (2005) case No: CO/1044/2033& CO/1491/2005 6 DH (2007) Who pays? Establishing the responsible commissioner 8

CHILDREN AND YOUNG PEOPLE S CONTINUING CARE PATHWAY Children and Young People s Continuing Care is delivered through a three phased process defined as; assessment, decision making and arrangement of provision as set out in the National Framework. The Southend, Essex & Thurrock Children and Young People s Continuing Care decision pathway is illustrated in Appendix 1.This decision pathway offers flexibility to reflect Essex County Councils, Southend Borough Council and Thurrock Council bespoke service pathways. Referral Eligibility Criteria The provision of Continuing Care for children and young people is dependent on the individual meeting the identified eligibility criteria. These are detailed as: The child or young person is under the age of 18 years The child or young person has complex health needs that include behavioural, emotional, mental health, physical disabilities. The child or young person has identified health needs which cannot be met by existing universal, targeted and specialist local health services. A checklist indicates the need to progress referral to a full assessment to establish eligibility for Continuing Care. The child or young person has a rapidly deteriorating condition which requires a care package to support end of life care. Any individual, team, key worker or parent/carer can request a continuing care assessment. Referrals should be made to the Children and young People s Continuing Care Service. The referrer will be asked to complete a Referral form and Checklist (appendix 2) which will contribute to determining the need to progress the referral to the Assessment Phase. The Referral and Checklist form provides opportunity for the referrer to consider need against baseline eligibility whilst avoiding inappropriate assessments, unnecessary delay and raised expectation of service users. Alternatively to adhere with local policy and practice a Common Assessment Framework (CAF), CORE and/or Child in Need assessment can be used as a referral. These must be submitted to the Children and Young Peoples Continuing Care team. 9

Assessment The continuing care checklist provides opportunity to determine whether an individual may be eligible to receive continuing care. The checklist threshold indicating progression to a full assessment is set at an appropriate level to prevent the undertaking unnecessary assessments which may lead to raised expectations. In some circumstances a child/young person s presenting needs may indicate eligibility and therefore a checklist may not be necessary. For example a child who is dependent on mechanical ventilation will achieve a severe score within the decision support tool which indicates eligibility. The assessment phase is the first formal stage of the continuing care process and is led by the Children and Young People s Continuing Care Health Needs Assessors. Children and Young People s Continuing Care Health Needs Assessors are qualified children s nurses who are trained to undertake holistic Health Needs Assessments. The assessment phase involves the collation of all current and pertinent assessments/information from key individuals who are highlighted as being involved in an individual s care. The collation of this information serves to provide a holistic and objective health needs assessment which incorporates the views of the child, young person and their family. This information is used to complete the Children and Young People s Continuing Care Health Needs Assessment form (appendix 3). The Health Needs Assessor will arrange to meet a child and family to inform them of the continuing care pathway and learn from them their perceptions and understanding of their child s needs. This will include communicating with the child /young person or gaining understanding from the Team around the Child as to what is important to the individual. Consent to request and share information is obtained from the child or young person and their parent/care before proceeding (appendix 4). If a referral was made using a CAF consent is still required for use within the Systmone national patient record. Requests for information are made through Systmone, in writing and/or by telephone to facilitate a timely response to the process (appendix 5). This information may require current providers to complete an assessment and/ or care activity record in relation to current care needs (appendix 6). This information is collated to specifically reflect the core values and principles outlined within the Children and Young People s Continuing Care Framework and to formulate a comprehensive multidisciplinary assessment. Assessments and the consideration of eligibility for Continuing Care for Children and Young People should be planned so that the family understands the process and the child or young person is included as far as possible. Decisions and rationales relating to eligibility should be transparent from the outset to members of the multi-disciplinary team, families and their children and young people wherever possible. Written information relating to the Continuing Care Process should be provided as a routine. All information for the assessment should be collected by the Children and Young People s Health Needs Assessor in a timely manner. The collated information will then be reviewed by the Children and Young People s Continuing Care Health Needs Assessor for the development of a holistic assessment defined by the Decision Support Tool framework. 10

Establishing that a child or young person meets criteria to be eligible for Continuing Care funding requires a clear, reasoned decision based on evidenced needs. Children and Young People that have been referred for continuing care will only meet criteria to be funded by NHS Essex Clinical Commissioning Groups if the child or young person has identified health needs that can be considered to be a mixture of complexity, severity, intensity, unpredictability and of significant risk as captured by the Decision Support Tool (DST) within the Children and Young People s Continuing Care Framework. This tool indicates as a guide that the achievement of at least 3 x High or 1 x Priority or Severe levels attained on the DST makes an individual eligible for Children and Young People s Continuing Care. It is then the duty of the multiagency panel to determine eligibility on the evidence available within the DST. On completion of the Health Needs Assessment the report and recommendations are shared with the child or young person s family. This provides opportunity for the child/young person and/or family to contribute further to the report and respond to the recommendations made. The health needs assessment equally provides opportunity for the child/young person and their family to identify a preferred package of care. This will include identification of existing support accessed or available to the family enabling the family to identify what support they need. The outcome of the assessment phase will be the recommendation that the child or young person is or is not eligible for Children and Young People s Continuing Care. If eligibility is confirmed and it is determined that the identified need cannot be met by existing universal targeted, or specialist services then arrangements are made for joint presentation of the continuing care Health Needs Assessment at the appropriate multi- agency panel. Decision Phase Multi agency panels are held monthly across NHS Essex. Access and remit of each Panel are detailed in Appendix 7. Continuing care cases are presented within 5 Panels across Southend, Essex & Thurrock. Each panel has multi agency representation and is comprised of Commissioners (clinical and non-clinical), Heads of services from the Local Authority, education and health and provides opportunity for consistency and transparency with regard to the provision of support packages to children and young people across Essex. Individual cases where it is appropriate are jointly presented to the Panel by the Children and Young People s Continuing Care Health Needs Assessor, education and social care representatives. Assessed recommendations and respective costed care package options are then considered to determine an appropriate a multi-agency package of support. Southend, Essex & Thurrock Panels: Southend Borough Council Acute and Complex Cases panel: Held monthly. Southend Borough Council Resource Allocation Panel: Held Monthly for presentation of Health cases. Thurrock Council Resource Allocation Panel: Every 2 weeks Essex County Council Joint Agency Panel: Monthly 11

Children and Young People s Continuing Care s funding is provided for identified needs that cannot be met by universal, targeted and specialist services and where need is considered to be long term. It is therefore expected that an individual s bespoke care package may involve a number of agencies with heath contributing funding in part for the assessed level of health needs. Children and Young People s Continuing Care is not appropriate for short periods of convalescence / recovery following an operation and cannot be implemented with the main aim of allowing parents or carers to go to work or short term to support postoperative rehabilitation. Health funding to support post-operative care can be considered outside of the continuing care framework and considered on an individual need basis. Following presentation at panel the Children and Young People s Continuing Care team will inform the family of the outcome of the Panel decision (Appendix 8). If a package of care is agreed it is the responsibility of the Head of Children and Young people s Continuing Care Commissioning to initiate arrangement of the agreed provision. This provision may involve commissioning on behalf of social care and education where joint funding has been recommended. In some circumstances it may be appropriate for Social Care and/or education to commission the package. In such instances financial arrangements should be formalised through the implementation of a Section 75. Determining level of provision and funding responsibilities should be identified on an individual basis to ensure that provision is tailored made and based on legislation. Decision tools such as the National Needs Assessment Tool for Long Term Ventilated Children and Children with complex Health Care Needs in the Community (2004) 7 can be used to support commissioners in their decision making. Where a joint care package is agreed a care package agreement (appendix 9) a is signed which is sent to the provider following award of the commissioned care package. Provision Phase Following a Panel decision the Children and Young People s Continuing Care Commissioner or lead Commissioning body will plan and commission services as agreed in line with Standard 3 of the National Service Framework 8. A clear timetable is important because it is in the best interest of the child or young person and their family for the outcome to be known as soon as possible. If the child or young person is being discharged from acute care or tertiary care, adherence to a clear timetable increases the likelihood of the child or young person being discharged in a timely manner and reduces potential for a delayed discharge. 7 National Needs Assessment Tool (2004) adapted from the Bradford Tool 8 DH (2004) National Service Framework for Children, Young people and Maternity Services: Core Standards. London.DH 12

Provision of a package of continuing care should occur as soon as possible following a decision being made at a multi-agency decision-making panel and the child or young person and family being informed. Implementation time frame for each care package will be dependent on the specific needs of the individual, the level of care required and the bespoke training needs of the child/young person. For example a bespoke care package for a child who has a tracheostomy may require carers to be recruited and trained specifically to meet individual need. Where NHS leads the commissioning of a care package the procurement of care packages should be identified from providers that have received accreditation for delivery of Children and Young People s Continuing care as determined through the Any Qualified Provider Procurement. This procurement was undertaken in partnership with Local Authorities to establish a robust, high quality and cost effective process for commissioning of care packages which offers parity for the population of Essex. To identify the most appropriate care provider for a specific child/young person a Care Package Request form is then completed by the commissioner to clarify individual package requirements (appendix 10). Providers are then asked to respond within 72 hours to the request. Where a number of providers are identified as being able to deliver the desired care package further information will be required with regard to: Implementation time Training requirements of staff Preference of family At this stage it may be appropriate to involve the child/young person and their family/carers so that they have choice over which care provider/carer to commission. This will only be considered where more than one provider has responded as being able to deliver care in accordance with the care package request. Parents, carers, children and young people will need to be informed and work in partnership with the identified providers in order to implement the determined package of care. This involvement may include participation in recruitment and training of staff where appropriate. The commissioned care package will aim to meet standard outcomes outlined within the contracted service specification and those specifically referred to in the Care Package Request form. Joint/partnership working between the parent/person holding parental responsibility for the child or young person and other agencies to provide the best possible service together for the benefit of the child or young person. Consideration must equally be given to a child/young person s Frazer competency to ensure that a child/ young person s opinion and choice is not undermined. 13

To support the child/young person and the parent/person holding parental responsibility for the child or young person with complex health needs enabling the child/young person to live at home with his/her family and within the wider community. Care packages are delivered within a safe environment by provision of experienced and appropriately trained staff. Care packages which require more than one provider to deliver provision have clear governance arrangement and identified lead provider. Risks are minimised as far as is reasonably practicable, of all known risks whilst undergoing a change of environment (outside of the home). Access to mainstream services and specialist services are facilitated as appropriate A child/young person is supported to achieve his/her full potential A child/young person is supported to maintain social contact, friends and relationships within the community A child/young person is supported to live with a sense of security FAST TRACK TOOL Children and young people with a rapidly deteriorating condition that may be entering a terminal phase, may require fast tracking for immediate provision of NHS continuing care. In such instances the Children & Young People s Continuing Care Health Needs Assessor will undertake a rapid assessment. Where a recommendation is made for an urgent package of care via the fast-track assessment this should be accepted and auctioned immediately by Head of Children & Young People s Continuing Care Commissioning. It is not appropriate for children and young people to experience delay in the delivery of their care package while concerns over eligibility are resolved. When a child/young person has been identified through the fast-track process as eligible for NHS continuing funding cannot be removed without the eligibility being reviewed in accordance with the standard review processes. PERSONALISATION As outlined in the NHS Operating Framework 11/12 the Government 9 is committed to delivering care, support and treatment to service users in a more personalised way. This is 9 DH (2010) The Operating Framework for the NHS in England 14

consistent with the wider Aiming High for Disabled Children and with the Every Disabled Child Matters charters which the Clinical Commissioning Groups and Local Authority have signed up to. Achievement of this has been proposed through developing Personal Health budgets for individual eligible for continuing care funding which will facilitate:. Greater integration between health, education and social care at the level of the individual Greater level of patient choice and control than currently exists Greater independence Improved working relationships between Clinical Commissioning Groups, Social Care, Provider organisations and 3 rd Sector organisations Increased personalisation Increased use of patients managing their conditions themselves with a corresponding decrease in unnecessary use of primary and secondary care services - Decrease in unnecessary use of social care - Improved transition and self-directed support at an earlier stage in line with adult services - Embeded, localised, inclusive and person-centred approach to transition planning. NHS Essex will work towards delivery of Personal Health Budget for children and young peoples in receipt of continuing care by April 2014 in line with national implementation. Personal health Budgets are only available as part of Department of Health national pilot prior to this date. North Essex is a pilot site for Children & Young People s Continuing Care. REVIEW All children and young people receiving continuing care packages must have a specified review date which the child/young person their parents/carers are informed of. For all new packages of care a review must take place 3 months following initial agreement. This review is undertaken by the Children and Young People s Continuing Care Health Needs assessor and can be a light touch review not to establish appropriateness of the care package. This review does not require formal presentation at a multiagency panel. In undertaking an assessment every effort must be taken to undertake a joint review with key workers from social care and education. Following initial review at 3 months review dates are set at an appropriate interval no greater than 12 months. Parents/carers must be made aware that they can request a review of the package at any time, and that this request will be considered and progressed accordingly by the Children and Young People s continuing care Health Needs Assessor and/or Commissioner. On review of a care package and where a potential change in provision is considered a full Health Needs Assessment must be completed. If it is determined that a continuing care package is no longer required, a presentation at Panel may be necessary to consider whether to reconfigure the package or to decommission the entire package. In the event of a care package being discontinued there should be a planned withdrawal of care, with the withdrawal period being no earlier than 28 days. 15

At any assessment/ review/ transition assessment, if it is identified that the child/young person does not meet the criteria then the following actions will be taken: The family are informed of the outcome in writing and are advised of their right to appeal against this decision. The family are advised that the ineligibility for continuing care does not affect eligibility for assessment for universal, targeted specialist services. The respective Panel/commissioner will direct the child, young person, family or key worker to appropriate service provision as required. DISPUTE RESOLUTION Continuing care arrangements, in relation to health, social care and education have the capacity to generate disagreements about agency responsibilities and funding, which maybe complicated further by the right to education for children and the duty of local authorities to make it available for all children of these ages. The growth of children and young people is one of rapidly changing physical, intellectual and emotional maturation in the context of social and educational development. Their continuing care needs are therefore best addressed holistically, and on a joint basis where agencies are involved in the providing them with services or care they are legally able to provide. Key Principles of dispute resolution The following principles apply:- The development of a culture of problem solving and partnership should be fostered. Formal disputes should be the last resort and should seldom be necessary. Multi-Disciplinary staff should endeavour to resolve issues at the frontline wherever possible using critical analysis to problem solve before escalating the problem. When staff are unable to reach an agreement, operational staff will have timely and ready access to senior managers and Panel members/ Chair who are expected to endeavour to agree a resolution of the issue with their counterparts. The child/young person should not become involved in the dispute in any way. In these cases, the child/young person should be informed that a decision will take a little longer than usual and be advised of the likely timescale. Children/ young people should always be cared for in an appropriate environment throughout the process. These process s do not prevent any child/young person accessing the relevant agencies complaints procedure Organisational Disputes Process 16

Where organisation disputes over care provision arise the mechanism for resolving disputes between NHS Essex and the Local Authority (LA) are facilitated with the key objective being to ensure that an individual s potential eligibility for continuing care is correctly determined and that an appropriate package of care is agreed and commissioned. The process of considering and deciding eligibility for continuing care must not delay treatment or appropriate care being put in place. The agreed arrangements will therefore be based on the following principles and where it is determined that NHS Essex are the responsible commissioner:- Neither, NHS Essex nor the Local Authority will unilaterally withdraw from funding an existing package. The child/young person will be discharged from hospital as soon as it is appropriate to do so (to their own home, nursing/residential care etc.) NHS Essex and Local Authority will work together to agree case management arrangements to ensure the child/young person continues to receive the best possible care. A placement will be funded without prejudice to the final decision (reimbursement will be paid if required). The placement will be funded by: - The funding body for a child and young person following discharge from hospital should continue until a package of care is agreed and funded. OR If no funding responsibility before admission or no comparable care package, NHS Essex and the Local Authority will consider potential service provision and funding arrangements. If eligibility for continuing care is determined NHS Essex will fund the package without prejudice in order to facilitate timely discharge. The Local Authority will then in accordance with statutory guidance and as appropriate undertake a full Community Care Assessment. Responsibility and disaggregation of funding will be based on the continuing care and Local Authority assessment of need. Panel Arrangements The arrangement for resolving disputes is for the Children and Young People s continuing care Health Needs Assessor and the Lead Professional from education and/or social care concerned to meet initially to discuss the assessment and reach a conclusion before the submission for presentation at the Panel. This must not delay discharge, if a care package is ready prior to this discussion taking place. In the event that there is no agreement, recommendations from both the Children and Young People s Continuing Care Health Needs Assessor and lead professional/social worker 17

should be submitted for presentation at the Panel with clear indication to the nature of dispute so that a resolution can be determined. In the exceptional event that there remains no agreement, a disputes meeting will be convened consisting of 5 representatives from: Relevant Clinical Commissioning Group ( Chair) NHS Commissioning Local Authority Commissioning NHS clinician Local Authority clinician A representative from each area is necessary for the meeting to be considered quorum. The Chair will be responsible for the final decision. Appeals Procedure: Parents and carers of children and young people undergoing assessment for continuing care have a right to be informed about the outcome of the assessment for eligibility and care package agreement. This includes the outcome of applying the Decision Support Tool and the decision made by the Children and Young People s Continuing Care Health Needs Assessor, Commissioner or multi- agency Panel. Where it is possible, parents/carers and individuals should be given the opportunity to be involved in discussions about eligibility for continuing care and they should be central to and involved in all assessments contributing to the Decision Support Tool. This may require them to make representation in writing. In such circumstances the Health Needs Assessor or social worker must identify if assistance is required to support transcribing of the appeal. Parents/carers and individuals should be given clear written information stating whether their child s needs meet the eligibility criteria for continuing care, the package of care awarded or an explanation of why the criteria was not met. Disputes frequently occur because people are not made aware of the criteria and are not able to understand why they do not qualify or do not understand why a certain level of care package was awarded. In addition, in line with the Children and Young People continuing care pathway, every effort should be made by the continuing care Health Needs Assessor to involve the parent/carer/individual in the development of the Health Needs assessments where recommendations on the level of care package required are identified. The emphasis of the pathway is full participation of the parent/ carer and individual at all times to ensure that all significant factors are taken into account and will ensure there is a good understanding of the criteria for eligibility and allocation of packages of care. Parents inability or refusal to be involved with this pathway cannot be considered the single rationale for not making recommendations about a care package. For example a parent of a child who is tracheostomy ventilated may not wish to receive continuing care support. In such circumstances a risk assessment should be undertaken as part of a continuing care assessment to ensure that the child/young person s health needs are not compromised. 18

The stages of the Appeals process are summarised as follows:- Stage 1: Informal procedure In the first instance the parent/carer should contact the Continuing Care Health Needs Assessor and/or lead professional/key member of the child s multi- agency team to discuss their concerns/issues. These concerns may be in relation to the continuing care assessment, and /or the outcome of the assessment in terms of whether or not their child meets ` criteria and/ or the outcome of the allocation panel in terms of the level of care package awarded. If the remain dissatisfied the Head of Children and Young People s Continuing Care Commissioner in partnership with key partners arrange to meet with parent/ carer to seek resolution of the appeal. Stage 2: Local Panel response If parents/carers remain dissatisfied, then they should be directed to appeal in writing to the Panel Chair/commissioner within 14 days of receipt of the Panel decision letter. Responsibility for an appeal will not be accepted until notification is received in writing from the parent / carer/ child or young person. Following receipt of an appeal the Panel Chair and/or the Head of Children and Young people s Continuing Care Commissioning will determine the level of response required. Level of response: Formal response letter The convening of a local appeals panel within 30 days. Written communication to parent / carer with explanation of local panel findings and recommendations would then follow. A Local Appeals Panel should not proceed if the parent/ carer, and where appropriate the individual concerned, has not had the opportunity of an informal discussion and also where that individual has not undergone a full assessment in line with the standards of the local Children and young people continuing care pathway. Written confirmation that a Local Panel will be convened should be forwarded to the parent/ carer and the child/young person where appropriate with an explanation of the process. The Local Panel will consist of 4 staff to include senior clinicians/managers/ commissioners. The outcome of the Local Panel s decision should be communicated in writing to the parent/ carer and individual within 7 working days of the decision being made by the chair of the panel. MONITORING OF PROVISION 19

In addition to the formal individual review process each package of care should be monitored to identify whether providers are delivering in accordance with the NHS Standard Contract agreement. This will include providers submitting a monthly report on the activity provided for each individual case (appendix 11).Contract monitoring will be formalised routinely with all active providers to maintain adherence to quality and standards. Failure to comply with any standard set out within the contract will initiate a comprehensive performance review which will be issued as a contract query. It is recognised that the facilitation of home care provision may result in complications which impinge on the delivery of a care package agreed by the Panel. In the event of such difficulties it is expected that the Health Needs Assessor and/or Commissioner will be notified promptly and where appropriate offer resolution guidance. In the unlikely event that concerns are not managed it may be necessary to involve a third party such as an advocate, Patient Advisory Liaison Service and/or, safeguarding. TRANSITION TO ADULT SERVICES Principles and Process Transition from children s services to adult services begins at the age of 14 ( Year 9). For all young people aged 14 or above, interventions which work towards fostering independence within the family unit will be promoted. This will involve the child/ young person assuming responsibility for decision making wherever this is feasible. Adult continuing healthcare commissioners will be notified of all young people in receipt of continuing care packages when they become 14 years of age and be provided with a completed and current Health Needs Assessment. This will be undertaken by the children and young people s continuing care health needs assessor. This referral is documented within the child/young person s electronic record and indicated within the Health Needs reassessment which is shared at the multiagency panel. Discussions around transition of continuing care needs will be linked where possible with Year 9 Transition Planning in accordance with local policy (appendix 12). Case reviews may therefore be predominately coordinated by Education and where this takes place the Children and Young People s Continuing Care Health Needs Assessor will highlight the need for representation from adult continuing healthcare, education and transition services. In line with the recommendations within the National Framework, Adult continuing care services must screen Young People who are receiving continuing care at age 16. Therefore the children s continuing care lead will formally refer the young person to the adult NHS continuing healthcare team to the relevant NHS commissioner. At the age of 17, eligibility for adult NHS continuing healthcare should be determined in principle, so that, wherever applicable, effective packages of care can be commissioned in time for the individual s 18th birthday (or later, if it is agreed that it is more appropriate for responsibility to be transferred then). In order to do this staff from adult services (who are 20

familiar with the Adult Framework) will need to be involved in both the assessment and care planning to ensure smooth transition to adult services. If needs are likely to change, it may be appropriate to make a provisional decision, and then to recheck it by repeating the process as adulthood approaches. Any entitlement that is identified by means of these processes before a young person reaches adulthood will come into effect on their 18th birthday, subject to any change in their needs. If a young person who receives children s continuing care has been determined by the relevant NHS Commissioner not to be eligible for a package of adult NHS continuing healthcare in respect of when they reach the age of 18, they should be advised of their noneligibility and of their right to request an independent review, on the same basis as NHS continuing healthcare eligibility decisions regarding adults. The Children s Continuing Care service should continue to participate in the transition process, in order to ensure an appropriate transfer of responsibilities, including consideration of whether they should be commissioning, funding or providing services towards a joint package of care. Where a young person receives support via a placement outside the Clinical Commissioning Group s area, it is important that, at an early stage in the transition planning process, there is clear agreement between NHS Commissioners as to who the responsible commissioner presently is, and whether this could potentially change. This should be determined by applying the principles set out in responsible commissioner guidance (currently Who Pays? Establishing the Responsible Commissioner23) All parties with current or future responsibilities should be actively represented in the transition planning process. A dispute or lack of clarity over commissioner responsibilities must not result in a lack of provision. A key aim is to ensure that a consistent package of support is provided during the years before and after the transition to adulthood. The nature of the package may change because the young person s needs or circumstances change. However, it should not change simply because of the move from children s to adult services or because of a change in the organisation with commissioning or funding responsibilities. Where change is necessary, it should be carried out in a planned manner, in full consultation with the young person. No services or funding should be unilaterally withdrawn unless a full joint health and social care assessment has been carried out and alternative funding arrangements have been put in place. SAFEGUARDING Assessment of children, young people and their families for continuing care should take account of safeguarding policy and legislation. The Children Act 2004 places a duty on all agencies to safeguard and promote the welfare of children and young people; those children who are being considered for continuing care may be especially vulnerable to abuse. Further information can be found in Working Together to Safeguard Children and Local Policy; Southend, Essex & Thurrock SET procedures 21