Title: Children s Continuing Care Policy Developed by: Nicky Houghton Document type: Policy Policy library: Service Improvement Sub Section: General Document status: Version 4 Document reference code: Date of ratification: 10/07/2012 Ratified By: Chief Executive Committee Date to be reviewed: 09/07/2015 Policy Ratification Name of Executive Direct ratifying Policy Carol Williams Direct of Service Improvement Signature.. Date.. Please return this iginal signed copy to: Governance Administrat Sedgemo Centre St Austell, PL25 5AS HISTORY Revisions: (Enter details of revisions below) Date: Auth: Description: 05/01/2012 Nicky Houghton Version 1 27/01/2012 Nicky Houghton Version 2 10/04/2012 Nicky Houghton Version 3 31/05/2012 Nicky Houghton Version 4 Consultation process completed: YES NO Date of when consultation period was completed: 27 th January 2012 Distribution Methods: This document is available in other fmats such as large print, Braille &/ cassette/cd in any other language, on request from Policy Lead 1All part of this document may be released under Freedom of Infmation Act 2000 unless otherwise indicated.
Cnwall and Isles of Scilly Children and Young People s Continuing Care Policy 2012 This document is available in other fmats such as large print, Braille &/ cassette/cd in any other language, on request from Policy Lead Page 2of 50
Contents Page Introduction 7 Purpose 7 Scope 7 Definitions 8 Duties 9 Children s Continuing Care Process 10-16 Appendices Appendix A Decision Suppt Tool DST (Nursing Needs Assessment) Appendix B Consent Fm Appendix C Fast Track Document Appendix D Referral Pathway Appendix E Transition Pathway Appendix F Terms of Reference Children s Continuing Care Decision Making Health Panel Appendix G Equality Moniting Fm Appendix H Flowchart f Children s Continuing Care Disputes Resolution Appendix I NHS Complaints Procedure Appendix J Equality Impact Assessment Page 3of 50
1.0 Executive Summary 1.1 The National Framewk f Children and Young People s Continuing Care defines continuing care as: - A package of care required when a child young person has needs arising from disability, accident illness that cannot be met by existing universal specialist services alone. Continuing care does not cover children and young people with health care needs that may be met appropriately through existing universal specialist services. 1.2 This policy describes the process, led by NHS Cnwall and Isles of Scilly, of assessing, deciding and agreeing children s eligibility f continuing care health needs and commissioning bespoke packages of care. The policy has been produced in consultation with a wide number of stakeholders, including: Counter Fraud Specialists, Equality and Diversity Managers, Paediatricians, Social Care Services, Strategic Health Authity, CIOSPCT Professional Practice, Transitions and Quality Managers,, Clinical Commissioning Groups, Service Provider Organisations, Learning Disabilities co-dinats, Community Teams and Parents/carers.(Full consultant list available) 2.0 Introduction 2.1 In March 2010 the Department of Health published the National Framewk f Children and Young People s Continuing Care. The National Framewk sets out a process f assessment and agreement of eligibility f continuing care criteria. 2.2 The National Framewk 1 is guidance only and this policy is in response to the principles within the National Framewk. It describes the way in which Children and Young People in hospital community are assessed as to whether they meet the Children s Continuing Care criteria. 3.0 Purpose 3.1 The purpose of this policy is to establish NHS Cnwall and Isles of Scilly responsibilities in meeting the continuing care health needs of children and young people, and to clarify the process f assessment and eligibility of children and young people who may have continuing care needs. 4.0 Responsibility 4.1 Relevant to all stakeholders involved with the care and suppt of Children up to their 18 th Birthday. 1 http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset /dh_116469.pdf Page 4of 50
5.0 Scope 5.1 This policy applies to children and young people from 0-18 years with complex health needs that live within Cnwall and Isles of Scilly, and who have continuing healthcare needs. This will include some children at end of life but does not cover sht breaks. Sht breaks are commissioned as a specialist service. 5.2 In exceptional circumstances, (e.g. when a child with complex health needs, requires surgery and meets the CCC criteria f a period post operatively and their needs can not be met through existing universal and specialist services) children s continuing health care maybe able to offer suppt to children who are in hospital f acute care at home post-operatively following surgery a medical procedure. This is approved by the Children Continuing Care decision making health panel. 5.3 A package of care is put in place to suppt the parent/carer to meet the individual health/medical needs of the child. In some cases it will be appropriate f care to be delivered away from the family environment in other settings and in cases where the parent/carer is not present it will be a jointly funded package to ensure appropriate level of supervision to meet the individual need. 5.4 All care packages will be subject to ongoing audit (monthly repts of provision and costs including any additional supplementary requirements) to ensure that the package is as agreed by both Cnwall and Isles of Scilly and the provider. 5.5 NHS Cnwall and Isles of Scilly takes the security of data held on all children very seriously and is compliant with Data Protection and Caldicott Guardian legislation. Any infmation passed by NHS Cnwall and Isles of Scilly to provider agencies in der f them to suppt a child in their home should be subject to the same level of security protection. 5.6 As part of ongoing checks on packages of care. All invoices will be subject to regular audit in der to highlight any discrepancies between the provision agreed and those invoiced. 6.0 Definitions Child - f the purposes of this policy the term child is an inclusive term to refer to all 0-18 years of age (up until the day of their 18 th Birthday) Continuing care - The National Framewk f Children and Young People s Continuing Care defines continuing care as: A package of care required when a child young person has needs arising from disability, accident illness that cannot be met by existing universal specialist services alone. These needs include health, social and educational needs which may require multi-agency input over an Page 5of 50
extended period of time Continuing care funding does not cover children and young people with care needs that may be met appropriately through existing universal specialist services. DST - refers to the Decision Suppt Tool in the National Framewk f Children s Continuing Care (2010). The DST brings together all assessment infmation and evidence to infm the decision as to whether a child meets continuing care criteria, through the Nursing Needs assessment process (Appendix A) by assessing: Ce domains Challenging behaviour Communication Mobility Nutrition food and drink Continence and elimination Skin and tissue viability Breathing Drug therapies and medicines Psychological and emotional Seizures. Each domain has up to five levels of need based on a mixture of complexity, intensity, unpredictability of need and risk to the child/young person: Priity Severe High Medium Low. A sce of three high ratings, one severe rating one priity rating is likely to indicate continuing care needs. End of life - refers to a child young person whose condition is deteriating rapidly characterised by an increasing level of dependency and where a lifespan is thought to be days weeks rather than months years. 7.0 Duties 7.1 The appropriate care of children with profound multiple disabilities chronic severe illness generally involves input from all statuty agencies: Health, Social Care and Education. High quality care f this small, but highly complex group of children depends on timely, comprehensive interagency assessment and co-dination of services. Parents/carers have the primary responsibility f the care of their child with statuty agencies suppting them to meet the child s identified needs. Page 6of 50
7.2 NHS Cnwall and the Isles of Scilly is responsible f leading the children s continuing care process, while recognising the individual may require services commissioned by NHS Cnwall and the Isles of Scilly, the Local Authity and other partners. Each agency is responsible f funding their own contributions to the continuing care package, in line with their statuty functions. The co-dination role of the NHS Cnwall and The Isles of Scilly will ensure that all agencies wk together to provide seamless care f a child and their family as far as is practically possible. 7.3 The Framewk was published pri to the Government s plans to transfer commissioning responsibility from PCT s to GP constia by 2013/14. Over the next two years NHS Cnwall and Isles of Scilly will wk with partners to ensure a smooth transition of the Children and Young People s Continuing Care process (as outlined in the National Guidelines) to new commissioning arrangements. 7.4 The National Framewk stresses the imptance f the Child and their family/carers to understand what is happening and to participate wherever possible. 8.0 Continuing Care Process 8.1 One Point of Contact All enquires relating to children with complex needs, continuing care needs, referrals f continuing care assessment will be directed to the Children s Continuing Care Commissioning Manager 2 (CCCCM), who will act as the one point of contact (National Framewk f, Young People and Children s Continuing Care DOH 2010). 8.2 Including: Co-dinating the assessment and recommendation process; Presenting the case to the CCC Health panel and multi-agency HNCP if appropriate; Commissioning the package of care; Ensure reviews are undertaken as outlined in the guidance 9.0 Referral 9.1 Referral to the CCCCM f continuing health care assessment will be made when a health need has been identified that cannot be met through existing universal specialist services. This additional need may be identified through a number of different routes e.g. by undertaking the Common Assessment Framewk (CAF) 3, through other specialist assessment processes. 2 NHS Cnwall and Isles of Scilly Contact; Sedgemo Centre, Priy Road, St Austell. PL25 5AS. Telephone 01726 627800 3 http://cnwall.childrensservicedirecty.g.uk/isa-toolkit/isa_toolkit_-_caf_part_1.pdf Page 7of 50
9.2 Receipt of continuing care referrals will be recded and acknowledged by the CCCCM administrat. 9.3 There will be some cases whose needs are such that access to care must be fast tracked, such as end of life care. In these cases there will be a simplified initial assessment to ensure that a decision is made within an acceptable time frame and completed assessments will follow. 9.4 In cases when urgent decisions are required and where waiting f an agreement at the decision making panel would create an unacceptable delay, the CCCCM ( in their absence, Seni Children s Commissioning Managers) can decide eligibility f continuing health care services. These decisions should then be presented at the next decision making health panel f ratification. 9.5 It is recognised that suppting children at the end of life can be emotional, but through robust End of Life care planning in collabation with the parents and carers some of this would be addressed. NHS Cnwall and Isles of Scilly adopt a holistic approach to end of life care, where the physical, spiritual/pastal needs of the individual and the wider family are taken into consideration. 10.0 Nursing Needs Assessment (Appendix A) 10.1 The Continuing Health Care process begins when there is an emerging recognition that a child young person may have continuing health care needs that cannot be met through existing universal specialist services alone. A child young person may reach this stage in a variety of ways: through sudden unexpected need, through deteriation of a long-term condition through congenital disease end of life. 10.2 Following referral, assessment of additional needs will be codinated by the CCCCM and will include an assessment of health, social care and educational needs, e.g. through current SEN (Statement of Special Educational Needs) if appropriate. 10.3 This assessment infmation and documentation will be used to complete the Decision Suppt Tools 10 domains (DST), included in the Nursing Needs assessment fm (Appendix A). All assessment infmation including the DST will infm the decision making process at the decision making health panel and may draw on earlier assessments that the child may have undergone. The assessment process will be health led and consist of: Health assessments codination of existing nursing and medical infmation Codination of social care and education assessments where appropriate Page 8of 50
Family and Child/Young Person s views, with a signed and dated consent fm as proof of agreement to share infmation in relation to the Child.(Appendix B) Other specialist assessments e.g., therapy, behaviour/functional analysis, risk, communication etc. 10.4 Health infmation must include written clinical guidelines and protocols. Eligibility f Children Continuing Care cannot be determined without this infmation. 10.5 The Health assessment (DST) should be undertaken by a qualified children s nurse an appropriate paediatric health professional with experience of children with complex health needs who also has experience in health assessment. 10.6 If a simplified assessment has been undertaken f an urgent case such as end of life care, where appropriate, a retrospective full assessment must also be undertaken within 7 days 10.7 Children and young people cannot be agreed f Children s Continuing Health Care without a full Fast track assessment having taken place. 10.8 All assessment documentation and crespondence will be recded by the CCC administrat and held electronically in individual case file. (Including copies of invoices) 11.0 Timescales 11.1 Assessment and decision making in relation to additional needs will be completed with in 35 days to align with Cnwall Council, but where ever possible will be done within 28 wking days from receipt of referral. 11.2 Urgent referrals should be assessed as appropriate but within 7 days. 11.3 If me time is required to undertake this process, the referring party and the family will be infmed of this extension, the reasons why and the proposed date of completion. 12.0 Decision Making 12.1 From the DST, three high ratings, one severe rating one priity rating is likely to indicate the child will meet the children s continuing care criteria. Decisions about the provision of Children and Young People s Continuing Care suppts and enhances the care that parents/carers are already giving the child, enables them to develop meaningful relationships with the whole family through the provision of consistent and skilled suppt not available through existing universal specialised services and takes into account family circumstances and the child and families preferences. Decisions about Children s Continuing Care are; culturally sensitive, person centred and do not Page 9of 50
marginalise a need because it is being well managed by the parent/carer. 12.2 A final decision regarding eligibility f Children s Continuing Care continuing care will be made by the Children s Continuing Care Decision Making Health Panel (Terms of Reference Appendix F) which meets on a monthly basis. Decisions are needs led, not based on diagnosis alone, and acknowledge layers of complexity. 12.3 As part of the decision making process, the panel will consider individual cases against The National Needs assessment Tool f long term ventilated children and children with complex needs in the community. Adapted from Bradfd Continuing Care Tool (October 2004). The tool will be used as an aid to help determine the appropriate level of care provision, only if a Child has been found to meet the CCC criteria and a package of care is being considered. 12.4 The decision of the Children s Continuing Care health decision making panel will be communicated to the child/young person, parents, carers and professionals involved in the process within 5 wking days of the decision being made. If the referral does not meet the criteria f children s continuing care it will be explained to the family why and where the referral has been fwarded to. 12.5 Some children with complex difficulties including behavioural problems, whose needs cannot be met solely by NHS Cnwall and Isles of Scilly through the continuing care process, may be referred to the High Care Needs Panel (HCNP) (Terms of Reference being update). This is a multi-agency panel, which includes representation from the Local Authity Children s Services: - Social Care and Education and NHS Cnwall and Isles of Scilly. The panel offers advice about the health care, social care and education of children with the most complex difficulties. F the Isles of Scilly the referral would be made through their own Complex Needs Panel f consideration. 12.6 Where a child on the Isles of Scilly meets the criteria f children s continuing health care and a bespoke package of care is needed, the CCCCM will liaise with multi-agency partners to ensure the individual needs of these children are met. 12.7 Each agency s individual input to the package of care will be agreed. 12.8 Decisions of the HNCP will be repted to the respective agencies through their appropriate governance route. 12.9 A review date will be set and the outcome of the review will be brought back to the decision making health panel f discussion. Page 10of 50
13.0 Disputes and Complaints Disputes 13.1 The Children s Continuing Care Commissioning Manager s will be the first point of contact f all complaints disputes relating to decisions made in relation to eligibility f children s continuing care and level of service provision. 13.2 It is the CCCCM s role to discuss the rationale and give clear reasons f the decision, as to a child s eligibility f continuing care services, the level of service provision. If a dispute arises, Parents/carers will be given details of the review procedure and suppt to guide them through this process. (This will also include ganisations who jointly suppting the care of a child and who dispute changes being made to a package of care.) 13.3 The CCCCM will arrange f a review of the case to be undertaken by another appropriate NHS Children s Continuing Healthcare professional, usually this will be done by another trust in a reciprocal agreement with the PCT. The outcome will be shared with appropriate suppting ganisations. (Appendix H) Complaints 13.4 Infmation will be given on the NHS Complaints procedure, including who to contact and a copy of the NHS Complaints leaflet if the Parents/carers wish to make a complaint about the Children s Continuing Care process. 13.5 If additional suppt is require by Parents/carers; to explain the procedure, NHS Cnwall and Isles of Scilly; PALS Complaints Manager will be able to assist with guidance completing fms. 13.6 All complaints should endeavour to be resolved through the local resolution process 4. All effts should be made to try and resolve the matter to the complainant s satisfaction at the time within a very sht period. (Appendix I) 14.0 Review and Re-assessment 14.1 All continuing care packages will be reviewed on a regular basis to ensure service specifications are being met and the service/package is appropriate to meet the individual health need. The first review should take place at approximately 3 months from the service commencing. Children/young people who have been agreed through the fast tracking process should be reviewed at 4 weeks. Following this a review should take place annually and should preferably coincide with any social care and education reviews where practicable. 4 http://www.cnwallandislesofscilly.nhs.uk/documentslibrary/cnwallandislesofscillypct/policie s/cpate/nhscioscomplaintspolicy.pdf Page 11of 50
The review timetable will be set by the CCC administrat who will notify qualified children s health professional of the need to reassess.. Outcome of reviews should be discussed at the decision making health panel and if appropriate the HCNP and repted back to parents/carers. Quality moniting will be undertaken in the fm of a peer review of cases by another PCT in a reciprocal agreement, where an agreed number of cases will be audited on an annual basis. 14.2 Reviews may be held me frequently if the child/young person s condition dictates. 14.3 In instances where a child/young person's continuing care needs have decreased, so that the transition back to universal specialist services is appropriate, the child/young person and their family should be suppted throughout this process. 15.0 Transition (Appendix E) 15.1 The final age f the transition of Children s Continuing Care arrangements f all young people will be their 18 th Birthday. 15.2 The need f transition of a young person will be identified in school year 9 (approx age of 14) at the child s annual review, and Adult services will be infmed by the social wker/lead professional. A young person will be referred f fmal screening by Adult Continuing Health Care services at age 16. 15.3 At the age of 17 17 ½ an individual s eligibility f Adult Continuing Healthcare should be decided in principle in der that packages of care can be commissioned in time f the individual s 18 th birthday. 15.4 The Adult Continuing Healthcare process legally requires the involvement of both health and adult social care assessment processes to determine eligibility. 16.0 Allocation of Resources 16.1 Children who have been agreed as eligible f Children s Continuing Care whose needs can not be met through existing universal specialist services alone will require a bespoke package of care and will be able to access nursing other suitably trained health care suppt in the home equivalent setting agreed and commissioned by the CCCCM. 16.2 The CCCCM will seek to commission such suppt/nursing care to meet the child s needs as far as is reasonable accding to the local availability of such services at the time, recognising that children s nursing/trained carers are a highly skilled and scarce resource. The extent of demand f additional funding to commission nursing care will Page 12of 50
be kept under review, and where substantial additional service is required over a significant period of time, options will be expled to enhance the capacity to provide these services. 17.0 Risk 17.1 Funding is made available by NHS Cnwall and the Isles of Scilly to meet the agreed allocation, but it may not always be possible to fulfil the packages because of the scarcity of skilled children s nurses/carers. 17.2 There may be exceptional circumstances that fall outside of the allocation criteria. Exceptions to the allocation criteria must be agreed by the Associate Direct of Women and Children s Commissioning, in the context of the resources available 18.0 Priitisation of packages of care 18.1 At times, despite pursuing all possible avenues to deliver packages of care, there may be exceptional circumstances which impact on delivery. In these cases NHS Cnwall and Isles of Scilly has endsed the following approach to priitisation of existing nursing/specialist care resources. Children with priity Children whose conditions carry a high degree of clinical risk, such as those children requiring assisted ventilation, where the clinical situation is unstable persistently difficult to manage. Acute deteriation in condition/terminal stages of illness as identified by medical assessment. Potential breakdown of the family unit due to the impact of care responsibilities as identified via a joint care planning meeting where several professionals involved in the care are raising serious concerns. Marked increase in the need f overnight nursing/health suppt to meet complex health needs as identified by nursing assessment. 18.2 This approach to priitisation may in exceptional circumstances result in the withdrawal of some existing packages of care to families currently receiving agreed packages in der that other families may receive some trained suppt/nursing care. In other cases, there may be a delay f the families of some newly assessed children who do meet Young People and Children s Continuing Care criteria who may not receive their agreed package of care at that time. 18.3 It is beneficial to be transparent about the amount of suppt that families should anticipate accding to the complexity of their child's need, and to establish a clear understanding with families at the outset about the facts which may impact upon their receipt of particular levels of service. Page 13of 50
19.0 Equality Impact Assessment (EIA) (Appendix J) 19.1 This document has been assessed, using the EIA toolkit, to ensure consideration has been given to the actual potential impacts on staff, certain communities population groups, appropriate action has been taken to mitigate eliminate the negative impacts and maximise the positive impacts and ensure that the implementation plans are appropriate and proptionate. 20.0 Education and Training Requirements 20.1 The CCCCM will promote awareness of the framewk and ganise multi-agency training opptunities to ensure quality standards are met and sustained. 21.0 Moniting Compliance and Effectiveness 21.1 NHS Cnwall and Isles of Scilly will audit the referral and assessment process and the decision making process one year from implementation of the policy, suppted by service managers. 22.0 References 22.1 Department of Health (2010) National Framewk f Children s Continuing Care Page 14of 50
Appendix A CHILDREN WITH COMPLEX MEDICAL NEEDS NURSING NEEDS ASSESSMENT (PLEASE NOTE THIS FORM MUST BE COMPLETED AND SIGNED BY A QUALIFIED CHILDREN S NURSE) INITIAL / ANNUAL ASSESSMENT: (Please delete if not applicable) RE-ASSESSMENT (3-6 months after initial/annual assessment) DATE: DATE: PERSONAL DETAILS CHILD S NAME: NHS NUMBER: MAIN CARERS NAME(S): ADDRESS: D.O.B: KNOWN AS: ADDRESS: TEL NO: ETHNICITY: RELIGION: TEL NO: RELATIONSHIP TO CHILD: PARENTAL RESPONSIBILITY? YES NO SIGNIFICANT OTHERS NAME: ADDRESS: FAMILY COMPOSITION: TEL NO: Please use this space f any changes to the above infmation Page 15of 50
DIAGNOSIS: DATE OF MOST RECENT MULTI-DISCIPLINARY TEAM MEETING: DETAILS OF CURRENT SUPPORT PROVIDED TO FAMILY TYPE OF SUPPORT PROVIDED BY HOW OFTEN SCHOOL/NURSERY ATTENDED (what suppt does the child receive) Page 16of 50
FAMILY S VIEW ON THE CURRENT SITUATION HAS THE CHILD BEEN CONSULTED? YES NO WHAT DOES THE FAMILY FEEL WOULD BE HELPFUL/IS NEEDED? WHAT DOES THE CHILD AND FAMILY UNDERSTAND ABOUT THE CONDITION AND THIS REFERRAL? Please circle the most appropriate box in each case THE CARER S ATTITUDE TO THEIR CHILD IS: Plays a maj part and wishes to continue Need some suppt but wishes to have maj role Need much me to be able to continue to meet the child s health needs Does not wish to is unable to care f child s nursing needs THE CARER S HEALTH IS: Not affecting ability to care Slightly affecting ability to care Significantly affecting ability to care Prohibiting ability to care SIBLINGS: No Siblings Dependant Siblings Further details: Siblings with health difficulties Siblings with other difficulties Page 17of 50
National framewk f Continuing Care Ce Domains Please tick appropriate box in each section accding to the assessed need Please give details in the Comments ASSESSED CARE NEED INITIAL ASSESSMENT REVIEW DATE: DATE: 1 CHALLENGING BEHVIOUR COMMENTS COMMENTS Functioning within current environment without further No specific specialist training of cares/professionals Some incidents of behaviours that do not pose a 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 Or Behaviours that indicate a marked difficulty in selfregulating their 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 infrastructures, and additional highlevel of 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 services. Needs Low Mod High Severe Page 18of 50
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 barriers to intervention, requiring direct, urgent and intensive specialist clinical assessment, treatment and review from specialist healthcare professionals in addition to those of the 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. Priity National framewk f Continuing Care Ce Domains Please tick appropriate box in each section accding to the assessed need Please give details in the Comments ASSESSED CARE NEED INITIAL ASSESSMENT DATE: DATE: REVIEW 2 COMMUNICATION COMMENTS COMMENTS Communicates clearly, verbally non-verbally, No appropriate to developmental needs. Has a good Needs understanding of their primary language. May require translation if English is not their first language. Able to understand and 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 Low Page 19of 50
recognised developmental milestones. Special efft may be needed to ensure accurate interpretation of needs, may need additional suppt visually either touch with hearing. Family/carers may be able to anticipate needs through non-verbal signs die 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, 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. Moderate High Page 20of 50
National framewk f Continuing Care Ce Domains Please tick appropriate box in each section accding to the assessed need Please give details in the Comments ASSESSED CARE NEED INITIAL ASSESSMENT REVIEW DATE: DATE: 3 MOBILITY COMMENTS COMMENTS Independently mobile as appropriate f age and No Needs developmental stage (with without mobility aids). Able to stand as appropriate f developmental age, Low but needs some assistance and requires suppt to access curricular extracurricular activities. Completely unable to stand but able to assist cooperate Moderate 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). High Page 21of 50
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. Severe National framewk f Continuing Care Ce Domains Please tick appropriate box in each section accding to the assessed need Please give details in the Comments ASSESSED CARE NEED INITIAL ASSESSMENT REVIEW DATE: DATE: 4 NUTRITION, FOOD AND DRINK COMMENTS COMMENTS Able to take adequate food and drink by mouth, to No Needs 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. Low Page 22of 50
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. Moderate High Severe National framewk f Continuing Care Ce Domains Please tick appropriate box in each section accding to the assessed need Please give details in the Comments ASSESSED CARE NEED INITIAL ASSESSMENT REVIEW DATE: DATE: 5 CONTINENCE AND ELIMINATION COMMENTS COMMENTS Page 23of 50
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. No Needs Low Moderate High Priity National framewk f Continuing Care Ce Domains Please tick appropriate box in each section accding to the assessed need Please give details in the Comments ASSESSED CARE NEED INITIAL ASSESSMENT REVIEW DATE: DATE: 6 SKIN AND TISSUE VIABILITY COMMENTS COMMENTS No evidence of pressure damage condition No Needs Page 24of 50
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; s 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. Low Moderate High Severe National framewk f Continuing Care Ce Domains Please tick appropriate box in each section accding to the assessed need Please give details in the Comments ASSESSED CARE NEED INITIAL ASSESSMENT REVIEW DATE: DATE: 7 BREATHING COMMENTS COMMENTS Nmal breathing (age-appropriate rate). No Needs Page 25of 50
Routine use of inhalers, nebulisers, etc. Low Episodes of acute breathlessness, which do not Moderate respond to self-management and need specialistrecommended input; requires the use of intermittent continuous lowlevel 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 High 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 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 Priity 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; Page 26of 50
a highly unstable tracheostomy, frequent occlusions and difficult to change tubes. National framewk f Continuing Care Ce Domains Please tick appropriate box in each section accding to the assessed need Please give details in the Comments ASSESSED CARE NEED INITIAL ASSESSMENT REVIEW DATE: DATE: 8 DRUG THERAPIES AND MEDICINES COMMENTS COMMENTS Parent, infmal carer self-administered medicine No Needs as age appropriate. Requires a suitably trained family member, fmal Low 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 Moderate 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 High Page 27of 50
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. Severe Priity National framewk f Continuing Care Ce Domains Please tick appropriate box in each section accding to the assessed need Please give details in the Comments ASSESSED CARE NEED INITIAL ASSESSMENT DATE: DATE: 9 PSYCHOLOGICAL AND EMOTIONAL COMMENTS NEEDS Psychological And Emotional Needs appropriate and similar to those of peer group Periods of emotional distress (anxiety, mildly lowered mood) not dissimilar to those of ageappropriate peer group, which subside and are selfregulated by the child/young person, with prompts/reassurance from peers, family, carers and/ key frontline staff within the children and young people s wkfce No additional needs Low REVIEW COMMENTS Page 28of 50
Requires prompts suppt to remain within existing infrastructures; periods of variable attendance in school/college; noticeably fluctuating levels of concentration; noticeable deteriation in self-care (outside of culture/peer group nms and trends) which often demands prolonged intervention from additional key staff; intentional self-harm, but generally high risk; Or Evidence of low moods, depression, anxiety periods of distress; reduced social functioning and increasing solitary, with a marked withdrawal from social situations; limited responses to prompts to remain within existing infrastructures (marked deteriation in attendance/concentration within lessons and deteriation in self-care outside of culture/peer group nms and trends) Rapidly fluctuation 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; Or 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 themselves and others; this will include high-risk, intentional selfharming behaviour. Moderate High Page 29of 50
National framewk f Continuing Care Ce Domains Please tick appropriate box in each section accding to the assessed need Please give details in the Comments ASSESSED CARE NEED INITIAL ASSESSMENT REVIEW DATE: DATE: 10 SEIZURES COMMENTS COMMENTS No evidence of seizures. No Needs Histy of seizures but none within past three Low months, medication if any is stable Occasional seizures periods of unconsciousness Moderate 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 High 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 Severe 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. Priity Page 30of 50
DATE OF INITIAL REQUEST FOR FUNDING: REVIEW SUMMARY SHEET WHAT CARE PACKAGE IS CURRENTLY IN PLACE: IS THE CARE PACKAGE STILL TO BE IMPLEMENTED? YES / NO HAVE THE NEEDS OF THE CHILD CHANGED SINCE THE PACKAGE WAS AGREED? YES / NO HAS A FURTHER NURSING ASSESSMENT BEEN UNDERTAKEN? YES / NO IF YOU HAVE ANSWERED YES TO ANY OF THE ABOVE QUESTIONS PLEASE GIVE DETAILS BELOW: WHAT CHANGES ARE YOU REQUESTING TO THE CURRENT PACKAGE? WHAT ARE THE FAMILY S VIEWS ON THE CURRENT ARRANGEMENTS: SIGNED: PRINT NAME: DESIGNATION: DATE: PLEASE USE THIS PAGE FOR ADDITIONAL INFORMATION (Please copy this page if you need additional space but please ensure each page is signed and dated) Page 31of 50
CHILD S NAME D.O.B: SIGNATURE OF ASSESSOR: PRINT NAME: DESIGNATION: DATE OF INITIAL ASSESSMENT: SIGNATURE OF ASSESSOR: PRINT NAME: DESIGNATION: DATE OF REVIEW: Page 32of 50
Appendix B REQUEST FOR HEALTH FUNDING FOR CHILDREN WITH COMPLEX MEDICAL NEEDS CONSENT FORM 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 health funding: General Practitioners Consultants; Hospitals; Nursing Services; Social Services; Education; Other agencies/health professionals involved in child s care NAME OF CHILD:... DATE OF BIRTH:..... NHS NO:.. ADDRESS:............. POSTCODE:.... TEL: MOBILE: WORK TEL:.. EMAIL:. I confirm that I have parental responsibility. SIGNED: DATE:.. PRINT NAME:..... CHILD/ MOTHER/FATHER/GUARDIAN (delete if not applicable) OTHER - please state. ADDRESS: (if different from above)........ POSTCODE:... Page 33of 50
Appendix C NHS Children s Continuing Care Fast Track Referral Fm Child/Young Person s Name: Permanent Address: NHS Number: DOB: Parent/Carers full names: Contact No: Current Location: Ethnic Group (if known): GP: Contact: CAF No / CAF registration No: Social Wker: Contact: Details of key professional co-dinating referral/discharge: Name: Designation: Proposed Date of Discharge: Contact Number: Discharge Location: The above named patient fulfils the following criterion: A deteriating condition where the child is referred f end of life care. End of life care is deemed appropriate where a child/young person has a sht life expectancy. Written supptive evidence outlining the presenting needs and sht life expectancy of the child/young person is required from a named Consultant. Brief Description of nature of illness/condition Clinician s/palliative Care Specialist Nurse signature: Name(please print) Signature: Designation/Title: Date: Please complete and send this Fast Track referral to Children s Continuing Care Commissioning Manager and then fward a Children s Continuing Care Nursing Assessment within 7 days. Page 34of 50
Decision f use by the Children s Continuing Care Decision Making Fum only Decision Agree / Disagree with recommendation Rationale f Agreement / Disagreement Package f review in 1 2 3 4 5 6 weeks months (circle as applicable) Action plan where there have been disagreements to recommendations Signature of Chair on behalf of members: Date: Page 35of 50
Appendix D Children s Continuing Care Pathway Children s Continuing care Commissioning Manger (CCCCM) notified of potential new case. Also one point of contact f advice and guidance Notify potential provider/s of new case End of Life Fast Track Children s Health Care Professional undertake assessment using DST and passes to CCCCM who co-dinates multi agency response as set out in framewk CCCCM makes recommendations to health panel End of Life Fast Track Referral Fm Completed (7 days) Health Panel Decision (No longer then 35 days) Meets Children s Continuing care criteria Not eligible advised of NHS Complaints Procedure (Appendix I) Not eligible advised of Disputes Process (Appendix H) Needs met with additional health funds through provider service Needs not met through additional funding alone. Seek joint funding CCCCM presents rept f to HCNP with recommendations and costs High Care Needs panel decision Agree to joint funding Not agreed. Decision fed back to carers Family/carers, health and social care professionals notified of package details (5 days) Provider service notified of package agreed Service commences Review Page 36of 50
Appendix E Children s Continuing Care Process f Transition to Adult Services Age 14 Meeting CCC criteria Not meeting CCC, but identified at Year 9 annual review (under multi agency transition protocol) as having complex needs In placement out of County identified by transition S W (from transition data) as having complex needs Age 15-16 Details given to CCCCM who will notify ACHC of possible new case Children s social wker/lead professional notifies transition social wker CCCCM identifies appropriate health care professional to undertake ACHC Checklist Age 16-17 ½ Checklist completed and passed to ACHC to screen f possible eligibility Eligibility possible Decision Suppt Tool completed Not eligible advised of NHS Complaints Procedure (Appendix I) Not eligible advised of ACHC appeals Process Age 18 Decision on eligibility f ACHC made Funding agreed and service/package commissioned from age 18 Funding required pri to age 18 CCCCM takes case to HCNP with recommendations f joint funding up to age 18 PCT continues to participate to ensure appropriate transfer any joint funding considerations Transition to adult services Page 37of 50