Children and Young People s Continuing Care Policy

Transcription

1 Children and Young People s Continuing Care Policy Document Auth Written by: Rachael Hayes Signed: Date: Job Title: Seni Commissioner, Children, Young People and Maternity Services. Authised Signature Authised by: Signed: Date: Job Title: Policy Lead Direct: Helen Shields Effective Date: Approval at: Review Date: Date Approved: Version Control Histy: (This section contains previous version histy of this policy once the policy has been approved and is only moved to this page after final approval) Version: Date: Auth: Status Comment: Rachael Hayes Rachael Hayes Rachael Hayes Rachael Hayes Rachael Hayes 1

2 CONTENTS PAGE SECTION DESCRIPTION 1 EXECUTIVE SUMMARY 2 INTRODUCTION 3 SCOPE 4 KEY RESPONSIBILITIES 5 IMPLEMENTATION/TRAINING/AWARENESS 6 MONITORING / KEY PERFORMANCE INDICATORS 7 REFERENCES 8 LINKS TO OTHER POLICIES 9 KEY PRINCIPLES 10 THE PROCESS MODEL 11 SCREENING FOR ELIGIBILITY 12 APPEALS 13 TRANSITION 14 RESOLUTION OF DISPUTES 15 DISCLAIMER Appendices: A B C D E F G CONTINUING CARE THREE PHASE ACTIVITY CHILDREN S CONTINUING CARE PATHWAY CHECKLIST/CONSENT FORM DECISION SUPPORT TOOL IMPACT ASSESSMENT FORM ON POLICY IMPLEMENTATION (INCLUDING CHECKLIST) EQUALITY IMPACT ASSESSMENT TOOL APPEAL PROCESS 2

3 1 EXECUTIVE SUMMARY The purpose of this policy is to ensure the consistent application of the continuing healthcare process (children) to ensure quality and fairness in decision making. 2 INTRODUCTION This policy sets out to explain how the continuing healthcare process f children operates on the Isle of Wight using the National Framewk. This framewk is not statuty but to be used as guidance to good practice. The National Framewk f Children and Young People s Continuing Care published by the Department of Health in March 2010 sets out an equitable, transparent and timely process f assessing, deciding and agreeing bespoke continuing care packages f children and young people whose needs in this area cannot be met by existing universal and specialist services. The focus of the framewk is the process by which nominated healthcare assesss carry out holistic assessments of children and young people. Continuing care is ganised differently f children and young people than adults. Continuing care f adults is governed by the National Framewk f NHS Funded Nursing Care. The framewk gives guidance on putting in place complete packages of care where an adult has been assessed as having a primary health need, it means that the provision of all their resulting care needs, whether at home in a care home is the responsibility of the NHS. However, childhood and youth is a period of rapid changing physical, intellectual and emotional maturation alongside social and educational development. Children and young people s continuing care needs are best addressed holistically by all agencies that are involved in providing them with services care therefe a multiagency care package should be agreed. 3 SCOPE This policy is designed to offer guidance to those responsible f assessing individuals under the continuing care process. The policy covers the healthcare needs of children needing additional suppt. 4 KEY RESPONSIBILITIES NHS Isle of Wight and Local Authity Isle of Wight have a statuty responsibility to meet health care, social care and education needs of children and young people. All children of compulsy school age (5-16) should receive suitable education. 3

4 Primary legislation governing the health service under section 1 of the NHS Act 2006 requires the Secretary of State to continue the promotion in England of a Comprehensive Health Service, designed to secure improvement in: Physical and Mental Health of People in England. The prevention, diagnosis and treatment of illness. The Secretary of State f Health is under a duty to provide services f the care of persons suffering from illness and aftercare of persons who have suffered from illness throughout England to whatever extent he/she considers necessary to meet all reasonable requirements. The NHS and Local Authity wk together to provide a holistic care package adhering to the principle of best outcomes f both child/young person and their family. Health should identify a named first point of contact f the commissioning of the children and young people s continuing care process. 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 named point of contact should hold contact details f all local nominated Children and Young People s health assesss. 5 IMPLEMENTATION/TRAINING/AWARENESS The joint Continuing Care Policy f Children and Young People does not have a mandaty training requirement but non-mandaty training is recommended with regard to completion of the assessment and processes. Training will be provided in-house. Once ratified this policy will be widely publicised across Health and Social Care. The policy will be reviewed and updated annually. 6 MONITORING & KEY PERFORMANCE INDICATORS The Continuing Care Process will be scrutinised and discussed with the lead professional. The lead professional will infm NHS Isle of Wight of any: Shtfall in provision from the agreed care package. Any potential risks in terms of health and safety. Any issues around quality of care as assessed by the lead professional. 4

5 Safeguarding: All staff wking with children/young people will have the necessary training in line with the safeguarding policy. Any safeguarding issues to be repted to the Designated Nurse f safeguarding. 7 REFERENCES DH National Framewk f Children and Young People s Continuing Care (March 2010). 8 LINKS TO OTHER POLICIES/DOCUMENTS (Adult) Joint Operational Continuing Health Care Policy, Isle of Wight NHS (Sept 2009). Commissioning Model f Children with Complex and Continuing Health Needs, NHS South Central (Nov 2009). Setting up Personal Health Budgets f Children and Young People, IW CCG (July 2014) A Practical Guide to Setting-Up a Personal Health Budget IW CCG (May 2013) The Operational Policy f Personal Health Budgets, IW CCG (May 2013) 9 KEY PRINCIPLES The children and young people s continuing care process should meet the vision of High Quality Care F All and should include: Clinical effectiveness; Patient safety; and The experience of the child young person and their family. The continuing care process should focus on the child young person in the context of their family, moving towards a me individual person-centred process during transition from childhood to adulthood. This means that the perception of the child young person and their family of their suppt needs, and their preferences in having those needs met, should be at the heart of the continuing care process. Their wishes and expectations of how and where care is delivered should be documented and taken into account, and their preferences should be considered alongside the benefits and risks of different types of provision. The child young person and their family being considered f continuing care should understand the continuing care process, receiving advice and infmation in a timely and clear manner. This will maximise their ability to participate in infmed decision-making about their future. 5

6 Generally, parents, as experts in their child young person s care and as primary carers, provide the majity of care to the child young person. Parents other primary carers need to be suppted to: Be skilled and confident in their caring; Manage the risks; and Ensure that quality of life is maintained f the family as a whole. The continuing care process should meet the standards of the Aiming High f Disabled Children Ce Offer (Darzi 2008 DOH). There should be no differentiation based on whether the health need is physical, mental psychological. The continuing care process should be: Fair Consistent Transparent Culturally sensitive, and Non-discriminaty. Decisions about a child young person s continuing care should be based on an assessment of their needs. The diagnosis of a particular disease condition is not in itself a determinant of a need f continuing care. 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. Wherever possible, continuing care should be provided in the child young person s home, but it may be provided in another setting such as a residential school, residential placement hospice. Establishment of a continuing care need is not determined either by the setting where the care is provided by the characteristics of the person who delivers the care. The children and young people s continuing care process requires a whole-system approach that should be reflected in an integrated continuing care pathway. This will ensure that: Primary, secondary tertiary care is co-dinated; The need to refer to local authity children s and young people s services is identified, if not being met already; and Appropriate referrals to input from specialist assessments, such as those by Child and Adolescent Mental Health Services, are made. Children and young people who require fast-tracking because of the nature of their needs, such as a prognosis indicating end-of-life care needs, should be identified early and the child young person s needs met as quickly as possible. The continuing care process should not restrict access to end-of-life care f children and young people who require immediate suppt over a shter period, and should not result in any delay to appropriate treatment care being put in place. 6

7 Where a child young person is found not to have a need f continuing care, a clear explanation of the rationale f the decision should be provided to the child young person and their family. In this instance, their needs should be addressed through existing universal and specialist services using a case management approach. A holistic approach to the assessment of need is imperative. The process of assessment and decision making should be child centred and take into account the child, young person and their parent/carers needs and preferred model of suppt. The process should be ganised to ensure the child/young person undergoing the assessment and their family fully understand the process (f the child/young person within their capabilities). All aspects of the process must be transparent, fair and consistent. During the assessment of need careful consideration should be given to whether not there is potential f independence change in the child/young persons need f a package of care i.e. the child/young person has recently been discharged from hospital and requires a care package temparily. Professional judgement is an essential component in the assessment process, therefe professional accountability is fundamental and should be concerned with weighing up the interests of the individual in complex situations whilst using professional knowledge, judgement and skills when making decisions. Continuing healthcare provision is to allow children and young people with complex health needs to: Achieve their optimum health and reduce the impact of any illness on their health and wellbeing. Lead dinary lives at home and attend school. Optimise their opptunities. It may be that a residential school placement is offered to meet all of a child s needs. In these cases this will not be classed as continuing health care, but these will have a continuing assessment completed to be used as an indicat of any health needs and the commitment of the NHS to provide funding f the healthcare available within school, commissioned separately as required. 10 THE PROCESS MODEL Befe proceeding to a continuing care application it will be expected that the multi agency team around the child, including universal and specialist health and social care advice will have wked in partnership to provide interventions at a local level. A child young person enters the continuing care process when agreement is made that the thresholds have been reached. The lead professional will be responsible f escalation from local services. Key at this stage is that universal and specialist health services can no longer contain the child safely within local services and a multi agency package needs to be determined. When a child enters the continuing care 7

8 process/pathway the decision on the package required should be within 35 wking days. The Process involves 7 key stages within the pathway as follows: 1. Indentify - Referral of child young person with possible continuing care needs is received. The Continuing Care Lead completes a Checklist to establish if Full Multi Disciplinary Team (MDT) Assessment is required. 2. Assess A Lead Professional is allocated by the Continuing Care Lead and codinates a full multi disciplinary team assessment and completes the Children and Young People s Decision Suppt Tool. 3. Recommend The Lead Professional prepares a rept with recommendations and costed options to present to the Joint Solutions Panel (Part 2). 4. Decide - Joint Solutions Panel consider recommendations and costed options and decides on package of continuing care f the child young person where a continuing care need is identified. 5. Infm - Child young person and family, referrer and relevant ganisations are infmed of decision by the Lead Professional. 6. Deliver The Lead Professional identifies provider(s) f package of continuing care / commissioning and implementation of package of care. 7. Review - Re-assessment at 3 months child young persons continuing care needs and appropriateness of care package and then annually in line with transition. Families should be made aware at the point of referral of the processes involved. The family and carer should be part of the assessment and consulted at all time. The continuing care process is a three phase activity (Appendix A) which the CCG, Local Authities and their partners undertake in der to deliver a continuing care pathway (Appendix B): Assessment phase led by a nominated children and young people s health assess (Lead Professional). The outcome of the assessment phase will be a recommendation from the health assess as to whether the child young person has continuing care needs that cannot be met by existing universal specialist services and therefe requires a package of continuing care including bespoke commissioning and funding arrangements. Decision making process the Joint Solutions Panel f funding of specialist care and suppt packages f children with complex needs will meet every month to discuss new cases and review existing cases (if no Panel, virtual decisions will need to be made). Arrangement of provision after the decision has been undertaken regarding a package of continuing care, the CCG, Local Authity and their 8

9 partners will undertake the planning and commissioning processes required to put in place the agreed package of continuing care. 11 SCREENING FOR ELIGIBILITY 11.1 Checklist This is undertaken in the first instance using the NHS Continuing Care Needs Checklist (Appendix C). The purpose of the Checklist is to help Practitioners identify children and young people who may require a full multi disciplinary team assessment to determine their continuing care needs. Completion of the Checklist will indicate any of the following: 1. A need f a full multi disciplinary assessment. 2. Fast Track application. 3. An inconclusive outcome. 4. A clear indication that consideration f continuing care is not required. The outcome must be clearly communicated with the child/young person and their family and the next steps in the process explained Fast Track Pathway Children and young people with a rapidly deteriating condition which may be entering a terminal phase will require fast tracking f immediate provision of continuing care. Where possible, the Lead Professional will complete a full assessment and present the rept with recommendations and costed out options to the Seni Commissioner who will then agree a care package with other agency commissioners where required, outside of the usual process. Fast Track Pathway YES Fast Track (End of Life) Screening Assessment (Checklist) NO Lead Professional responsible f Fast Track Liaison Submission of rept to Continuing Care Manager with recommendations and costed out options f care package. Authisation and approval agreed between agency commissioners Consider Full Assessment 9

10 11.3 Full Assessment (Typical Pathway) Children and young people who are offered a full assessment will undergo a healthled comprehensive multi disciplinary assessment which will include an assessment of health, social care and education needs. The assessment will involve a clear, reasoned evidence base from a range of sources that takes account of the child s particular needs in a holistic and family-centred context. Children with continuing care needs will often have had a range of other individual assessments, f example from the Common Assessment Framewk specialist assessments. The results of these should infm both the assessment and decision-making processes of the child young person s continuing care assessment. Lead Professional carries out check list Continuing Care Panel Recommends YES NO Lead Professional carries out continuing care assessment Lead Professional prepares rept with recommendations and costed out options Decision YES Funding Split agreed between agencies f care package Lead Professional Infms child/young person & family of outcome and next steps Care Package implemented / commissioned Decision NO If appeal successful full Continuing Care Assessment to be completed Child/Young Person & family infmed of outcome and right to appeal 3 Month REVIEW Typical Pathway Annual REVIEW in line with transition There are four areas of the assessment phase, which the NHS, Local Authities and their partners should ensure that their processes reflect. The first three are: The preferences of the child young person and their family; Holistic assessment of the child young person and their family, including carer assessment; and Repts and risk assessments from the multidisciplinary team. The evidence and outcomes of these three areas are then collated in the fourth area: The children and young people s Decision Suppt Tool (Appendix D). Each of the four areas of assessment is imptant to the determination of a need f continuing care. The nominated Lead Professional undertaking the assessment should demonstrate evidence-based professional judgement in each of the four areas to suppt their recommendation(s). 10

11 Area 1 The preferences of the child young person and their family In the first area the nominated children and young people s health assess is responsible f capturing the child young person s and their family s preferences. Area 2 Holistic assessment of the child young person and their family, including carer assessment 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. In instances where social and education assessments have not already been undertaken, the nominated children and young people s health assess should liaise with the appropriate professionals to instigate an assessment in these areas and then use these repts to infm the holistic assessment of the child young person s continuing care needs. Area 3 Repts and risk assessments from the multidisciplinary team In the third area, the nominated children and young people s health assess is responsible f undertaking any necessary healthcare risk assessments that have not already been undertaken and collating the relevant risk assessments and repts (health, social and education). Area 4 The children and young people s Decision Suppt Tool The fourth area brings together the assessment infmation from the three other areas. It is not a stand-alone tool and is designed to ensure that relevant needs are assessed, captured and described in a consistent way. Diagram 1 shows how the first three areas of the assessment phase feed into the fourth area, the Decision Suppt Tool. Diagram 1 The four areas of the assessment phase. The input of the third sect should be considered in the assessment phase, as appropriate. 11

12 The Children and Young People s Decision Suppt Tool takes care to ensure that a specific need is not duplicated in two separate domains. 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. Assesss should consider the level of need identified in all care domains in der to gain the overall picture. Following notification of the decision, the child young person and their family shall be involved in discussions on the next steps and time-frames to implement the package of continuing care Review The continuing care process does not end with the provision of a package of continuing care. Ongoing case management is required f those children young people in receipt of continuing care, and reviewing the package of care is an imptant part of the arrangement of provision phase. The Lead Professional will be able to co-dinate effectively all the various agencies involved in providing care. All children and young people s continuing care packages will be reviewed within 3 months from the start of the care package and then annually thereafter in line with transition sooner if the health care needs change. In instances where a child young person s continuing care needs have decreased so that transition back into universal specialist services is appropriate, the child young person and their family should be suppted throughout this transition. The review will be held jointly with Social Care and Education as appropriate and the child/young person and their family will be involved throughout the process. 12 APPEALS The child young person and their family should be infmed of their rights and of the complaints procedure in the case of a decision which does not meet their preferences and/ expectations. The Appeals process can be found in Appendix G. 13 TRANSITION F moving into Adult Services planning begins at age 16 at the child s annual review. A Continuing Care assessment will be done jointly with the Children s and Adult s Continuing Care teams. 14 RESOLUTION OF DISPUTES At times when disputes may arise between the statuty bodies where funding f a package cannot be agreed, the case will be referred to a joint seni team of Health, Local Authity and GP s. Cases will be presented f resolution. 12

13 15 DISCLAIMER It is the responsibility of staff to check the IW NHS Trust intranet to ensure that the most recent version/issue of this document is being referenced. 13

14 Appendix A Continuing Care Three Phase Activity Phase of the continuing care process Assessment Phase Decision Making Phase Arrangement of Provision Phase Stage of the Pathway Summary of Key Actions Timescales Cumulative timescales 1. Identify Referral of child young person with possible continuing care needs accepted by CCCN team. Checklist completed. Fast track if necessary. 2. Assess Lead Professional is allocated and codinates full MDT assessment and completes Decision Suppt Tool. 3. Recommend Lead Professional prepares recommendations and costed options f Joint Funding Panel. 4. Decide Joint Funding Panel meets to consider recommendations and costed options and decides on packages of continuing care f child young person where a continuing care need is identified. 5. Infm Child young person and family, referrer and relevant ganisations infmed of decision. 6. Deliver Identify provider(s) f package of continuing care / commissioning and implementation of package of care / ongoing training, suppt and moniting. 7. Review Re-assessment of child young person's continuing care needs and appropriateness of package of continuing care should occur three month after initual assessment, then annually as a minimum sooner as appropriate. Start of clock. Within 10 wking days. Within 2 wking days. Within 20 wking days ( panel meets once a month) Within 2 wking days. Day 1 Day 11 Day 13 Day 33 Day 34 Dependant of providers being available and their capacity - aim f 10 wking days. 3 months then annually as appropriate in line with transition requirements. 14

15 Appendix B (Separate Document) Children s Continuing Care Pathway 15

16 NHS Continuing Healthcare Checklist Guidance f Completion Practitioners are advised to refer to the full National Framewk f Children and Young People s Continuing Care This Checklist is to help practitioners identify people who need a full consideration of whether they have a Primary Health Need and qualify f NHS Continuing care. The joint Continuing Care Policy f Children and Young People does not have a mandaty training requirement but non-mandaty training is recommended with regard to completion of the assessment and processes. Please note that referral f consideration f NHS Continuing Care is not an indication of the outcome of the eligibility decision: this must be communicated to the individual and/ their representative as appropriate. In a hospital setting, the Checklist should not be completed whilst the person is still receiving acute treatment rehabilitation. The persons needs on discharge must be clear. This Checklist mirrs the 10 domains represented within the Decision Suppt Tool. The notes on the Decision Suppt Tool and the National Framewk guidance will help you understand this tool. The purpose of completing the checklist must be explained to the person and / their representative - subject to their capacity to comment. The NHS Funded Care consent fm is attached to this document. This must be completed pri to checklist. The Individual and/ representative must be offered the opptunity to contribute to the assessment process and must receive a copy of the checklist. A copy of the completed checklist, consent fm and equality moniting fm MUST be completed and fwarded to: Childrens Continuing Care Administrat, Community Commissioning Team, Isle of Wight Clinical Commissioning Group, Building A, The Apex, St Cross Business Park, Newpt, Isle of Wight PO30 5XW Appendix C How to Use This Tool Please compare the descriptions of need to the needs of the individual and select levels from no additional needs, low, moderate, high, severe priity as appropriate, f each domain. If the needs of the individual are greater than anything in the descriptions, then severe should be selected. Consider all the descriptions and select the one that most closely matches the individual. F each domain, please also give a brief reference, stating where the evidence that suppts the decision can be accessed, if necessary. A full consideration of eligibility is required if there are: Either three high ratings, one severe, rating one priity rating is likely to indicate continuing care needs. There may also be circumstances where you consider that a full consideration f NHS Continuing care is necessary even though the individual does not apparently meet the indicated threshold. Whatever the outcome, assesss should recd written reasons f the decision and should sign and date the Checklist. Assesss should infm the individual and/ their representative of the decision, providing a clear explanation of the basis f the decision. The individual should be given a copy of the completed Checklist. The rationale contained within the completed Checklist should give enough detail f the individual and their representative to be able to understand why the decision was made. Individuals and their representatives should be advised that, if they disagree with the decision not to proceed to a full assessment f NHS continuing care, they may ask the CCG to reconsider it. They should be given details of whom to contact should they wish to pursue this course of action. 16

17 REQUEST FOR FUNDED HEALTHCARE FOR CHILDREN WITH COMPLEX MEDICAL NEEDS CONSENT FORM NB: All personal infmation provided will be treated in the strictest confidence and will only be divulged to those parties involved in the NHS Funded Care/Continuing Care administration, assessment and payment processes. Guidance f Completion Consent must be obtained pri to completion of the checklist and if required, full assessment to determine eligibility f NHS Funded Care - This includes Funded Nursing Care (FNC) and Continuing Care. If consent is given, this will prompt Full Assessment of need. Therefe, this consent may be used to request infmation from a variety of sources including: GP, Hospital Doct, Social Care Practitioner, District Nurse, Nurse Specialist and Allied Health Professionals. Infmation will be held as confidential and only shared as part of the eligibility decision making process f the purposes of procuring care and treatment. Infmation will be shared with the Isle of Wight CCG f the purpose of payment processing. Always retain a copy of this fm in the patient s notes. A copy must be fwarded with the checklist referral to the: Childrens Continuing Care Administrat Community Commissioning Team Isle of Wight Clinical Commissioning Group Building A, The Apex St Cross Business Park Newpt Isle of Wight PO30 5XW I give consent f infmation to be obtained from and/ shared with any all of the following agencies/health professionals with regard to an application f funded healthcare: General Practitioners Consultants Hospitals Nursing Services Social Services Education Isle of Wight Clinical Commissioning Group Other agencies/health professionals involved in child s care 17

18 About the Child/Young Person Full name: Address (including Postcode) NHS Number: Date of Birth: Registered GP name: Registered GP practice: Hospital ID no: (if applicable) Yes No Has the patient given consent f the NHS staff involved in handling their case t look at their personal confidential data? If this fm has not been signed by the named person above, please give the following infmation about the person completing and signing the fm on their behalf I confirm that I have parental responsibility/authised capacity CHILD/MOTHER/FATHER/GUARDIAN (delete if not applicable) OTHER Please state: Mr/Mrs/Miss/Ms Persons Name: Address (If different from above): Contact Telephone No: Accept Assessment Please read and sign this section if you wish to give permission f assessment I have had this process explained to me and I, the undersigned, give my permission f the local NHS to undertake an immediate assessment of my/my child s health needs and subsequent assessments as appropriate to determine eligibility to receive NHS Funded Care. Signature Date Decline Assessment Please sign this section if you DO NOT wish to give permission f assessment I, the undersigned do not wish to/my child to be assessed at this time/withdraw my consent (delete as appropriate), but reserve the right to request an assessment in the future. I understand that I will not be eligible to receive NHS Funded Care until I have been assessed and that any future assessment cannot be back dated. Signature Date 18

19 Date of completion of Checklist: NHS Continuing Care Needs Checklist Person s Details Name Gender DOB NHS No. Place of residence at time of checklist Address f all personal communication with person/representative Representative name, address and telephone number Please ensure that the equality moniting fm at the end of the Checklist is completed. Was the person involved in the completion of the Checklist? Yes/No (please delete as appropriate) Was the person offered the opptunity to have a representative such as a family member other advocate present when the Checklist was completed? Yes/No (please delete as appropriate) If yes, did the representative attend the completion of the Checklist? Yes/No (please delete as appropriate) Name of practitioner completing this fm 19

20 Name of person: Description Date of completion: 1. Challenging behaviour Functioning within current environment without further specific specialist training of carers/professionals. Some incidents of behaviour that do not pose a significant risk barrier to intervention, but require some additional direct/indirect input from identified resources/professionals within frontline services. Challenging behaviour that follows a predictable pattern and that does not pose a risk to self others; behaviours that indicate a marked difficulty in self-regulating his/ her behaviours. This may include impulsive behaviours and/ self-neglect (self-neglect differs from parental neglect and is me applicable to adolescents). This is also separate from peer cultural trends/unifm identity. Demonstrates a fluctuating po ability to self-regulate behaviours in maintaining personal safety and development, despite specialist health intervention. Likely to require intense multi-agency involvement to maintain existing infrastructure, and additional high-level suppt from several agencies. Demonstrates a consistent po ability to self-regulate behaviours in maintaining personal safety and development, despite specialist health intervention. Likely to require ongoing, intense multi-agency involvement to maintain any infrastructure, and additional high-level suppt from several agencies. Usually requires direct specialist clinical assessment, treatment and review from specialist healthcare professionals in addition to those of frontline service. Demonstrates a consistent po ability to self-regulate behaviours in maintaining personal safety and development, despite specialist health intervention, whereby the physical health and safety of the person others is likely to be placed in serious jeopardy; and behaviours that create a barrier to intervention, requiring direct, urgent and intensive specialist clinical assessment, treatment and review from specialist healthcare professionals in addition to those of frontline services; and sustained behaviours that demonstrate the impairment of a child/young person s personal growth and development through an inability to access necessary resources. Level of need circle as appropriate No additional needs Low Moderate High Severe Priity Evidence in recds to suppt this levels 20

21 Description 2. Communication Communicates clearly, verbally non-verbally, appropriate to developmental needs. Has a good understanding of their primary language. May require translation if English is not their first language. 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 to communicate their needs. The child/young person s ability to understand and communicate is appropriate f their age and recognised developmental milestones. Special efft may be needed to ensure accurate interpretation of needs, may need additional suppt visually either through touch with hearing. Family/carers may be able to anticipate needs through non-verbal signs due to familiarity with the individual. Expressive receptive language. The child/young person s ability to understand communicate is appropriate f their age and developmental level. However: Special efft may be needed to ensure accurate interpretation of their needs; f example: > the child/young person may need prompting to communicate their needs; and/ > the child/young person may need additional suppt visual suppt such as symbols, signing suppt with hearing, e.g. use of hearing aids. Family/carers may be able to anticipate and interpret the child/ young person s needs due to familiarity. Communication about basic needs is difficult to understand interpret, even when prompted, unless with familiar people, and requires regular suppt. 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 level of pain; the child/young person demonstrates severe frustration about their communication, f example, through challenging behaviour withdrawal. Even with frequent significant suppt from family/carers and professionals, the child/young person is rarely able to communicate basic needs, requirements ideas, even with familiar people. Level of need circle as appropriate No Additional needs Low Moderate High Evidence in recds to suppt this level 21

22 Description 3. Mobility Independently mobile as appropriate f age and developmental stage (with without mobility aids). Able to stand as appropriate f developmental age, but needs some assistance and requires suppt to access curricular extracurricular activities. Completely unable to stand but able to assist co-operate with transfers and/ repositioning by one carer care wker to a level appropriate f developmental age; sleep deprivation due to underlying medically/mobility related needs occurring three times a night (and at least two nights per week). Unable to move in a developmentally appropriate way; cared f in one position (bed chair) and due to 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 unstable clinical condition such that on movement transfer there is a high risk of serious physical harm; where positioning is critical to physiological functioning life. Level of need circle as appropriate No additional needs Low Moderate High Severe Evidence in recds to suppt level 22

23 Description 4. Nutrition, food and drink Able to take adequate food and drink by mouth, to meet all nutritional requirements. Appropriate to developmental age. Some assistance required above what is appropriate f their developmental age; needs supervision, prompting and encouragement with food and drinks above the nmal requirement f developmental age; parent/carer and/ child/young person needs suppt and advice about diet because the underlying condition gives greater chance of noncompliance, including limited understanding of the consequences of food drink intake; needs feeding when this is not appropriate f developmental age, but is not time consuming. Needs feeding to ensure adequate intake of food and takes a long time (including liquidised feed); specialised feeding plan developed by speech and language therapist; unable to take sufficient food and drink by mouth most nutritional requirements taken by artificial means, f example, via a non-problematic tube feeding device, including naso-gastric tubes. Dysphagia, requiring a management plan 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, suction; problems with intake of food and drink, requiring skilled intervention to manage nutritional status; recognised eating disder, with self-imposed dietary regime self-neglect, f example, depression leading to intake problems placing the child/young person at risk and needing skilled intervention; problems relating to a feeding device which require skilled assessment and review. The majity of fluids and nutritional requirements are routinely taken by intravenous means. Level of need circle as appropriate No additional needs Low Moderate High Severe Evidence in recds to suppt level 23

24 Description 5. Continence and elimination Continent of urine and faeces (appropriate to age and development). Continence care is routine on a day-to-day basis and age appropriate; incontinent of urine but managed by other means, f example, medication, regular toileting, pads, use of penile sheaths; is able to maintain full control over bowel movements has a stable stoma, but may have occasional faecal incontinence; has a stoma requiring routine attention. Doubly incontinent but care is routine; self-catheterisation; has a stable stoma but may have occasional faecal incontinence. 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 peritoneal dialysis haemodialysis to sustain life. Level of need circle as appropriate No additional needs Low Moderate High Priity Evidence in recds to suppt level 24

25 Description 6.Skin and tissue viability No evidence of pressure damage condition affecting the skin. Evidence of pressure damage and pressure, a min wound requiring treatment; skin condition that requires clinical reassessment less than weekly. 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 care wker several times each day, without which skin integrity would break down. Open wound(s), which is (are) not responding to treatment and require a minimum of daily moniting/reassessment; active 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 circle as appropriate No additional needs Low Moderate High Severe Evidence in recds to suppt level 25

26 Description 7. Breathing Nmal breathing (age-appropriate rate). Routine use of inhalers, nebulisers, etc. Episodes of acute breathlessness, which do not respond to self-management and need specialist-recommended input; requires the use of intermittent continuous low-level oxygen therapy to prevent secondary health issues; has profoundly reduced mobility leading to increased susceptibility to chest infection; requires daily physiotherapy to maintain optimal respiraty function; breathing difficulties, which require al suction. 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. Has frequent, hard-to-predict apnoeas; and/ severe, life-threatening breathing difficulties, which may require essential al pharyngeal and/ naso pharyngeal suction, day night; a tracheostomy tube that requires essential suction by a fully trained carer, to maintain a patent airway; and/ 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 and one-to-one suppt while asleep, as disconnection would be fatal; a highly unstable tracheostomy, frequent occlusions and difficult to change tubes. Level of need Circle as appropriate No additional needs Low Moderate High Severe Priity Evidence in recds to suppt level` 26

27 Description 8. Drug therapies and medicines Parent, infmal carer self-administered medicine as age appropriate. 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; and 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). Has a drug regime that requires management by a registered nurse (within prescription) at least weekly, due to a fluctuating and/ unstable condition symptom management; sleep deprivation caused by severe distress due to pain requiring medication management occurring four times a night (and four times a week). 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; and/ extensive sleep deprivation caused by severe intractable pain requiring essential pain medication management occurring every one to two hours. 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 required. Level of need Circle as appropriate No additional needs Low Moderate High Severe Priity Evidence in recds to suppt level 27

28 Description 9. Psychological and emotional needs (Beyond what is nmally expected from a child/young person of this age) Psychological emotional needs apparent but age appropriate and similar to those of peer group. Periods of emotional distress (anxiety, mildly lowered mood) not dissimilar to those of age-appropriate peer group, which subside and are self-regulated by the child/young person, with prompts/ reassurance from peers, family members, carers and/ key frontline staff within the children and young people s wkfce. Require prompts suppt to remain within existing infrastructure; periods of variable attendance in school/college; noticeably fluctuating levels of concentration; noticeable deteriation in self-care (outside of cultural/peer group nms and trends) which often demands prolonged intervention from additional key staff; intentional 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/concentration within lessons and 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 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 young person at risk to his/her self and others; this will include highrisk, intentional self-harming behaviour. Level of need Circle as appropriate No additional needs Low Moderate High Evidence in recds to suppt level 28

29 Description 10. Seizures (This encompasses the whole range of types of seizures and any associated risks) No evidence of seizures. Histy of seizures but none in the past three months; medication (if any) is stable. Occasional seizures periods of unconsciousness that have occurred within the last three months which require the supervision of a carer care wker to minimise the risk of self-harm; sleep deprivation due to essential seizure management occurring three times a night. Seizures that result in unconsciousness and that may require frequent (me than monthly) skilled intervention to reduce the risk of harm and may require the administration of medication by a registered nurse specially trained carer; sleep deprivation due to essential seizure management occurring four times a night. Severe uncontrolled seizures, daily me, resulting in unconsciousness that does not respond to treatment outlined in an established protocol, and results in a high probability of risk to his/her self others. Requires daily intervention by a registered nurse who will use clinical judgement to select and implement from a range of appropriate interventions to manage seizures and treat any related risks. Level of need Circle as appropriate No additional needs Low Moderate High Severe Priity Evidence in recds to suppt level Either three high ratings, one severe rating one priity rating is likely to indicate continuing care needs. 29

30 Name of Person NHS Continuing Care Checklist DOB Please highlight the outcome indicated by the checklist: 1. Referral f full consideration f NHS Continuing Healthcare 2. No referral f full consideration f NHS Continuing Healthcare 3. Fast Track Application Rationale f Decision Name(s) and signature(s) of Assess(s) Date Contact details of assesss (name, role, ganisation, telephone number, address) 30

31 About you equality moniting Please provide us with some infmation about yourself. This will help us to understand whether everyone is receiving fair and equal access to NHS continuing healthcare. All the infmation you provide will be kept completely confidential. No identifiable infmation about you will be passed on to any other bodies, members of the public press. 1 What is your sex? Tick one box only. Male Female Transgender 2 Which age group applies to you? Tick one box only Do you have a disability as defined by the Disability Discrimination Act (DDA)? Tick one box only. 4 What is your ethnic group? Tick one box only. A White British Irish Any other White background, write below B Mixed White and Black Caribbean White and Black African White and Asian Any other Mixed background, write below C Asian, Asian British Indian Pakistani Bangladeshi Any other Asian background, write below D Black, Black British Caribbean African Any other Black background, write below E Chinese, other ethnic group Chinese Any other, write below The Disability Discrimination Act (DDA) defines a person with a disability as someone who has a physical mental impairment that has a substantial and longterm adverse effect on his her ability to carry out nmal day to day activities. Yes No 31