NHS Lothian Decision Suppt Tool Children and Young People Healthcare Needs Eligibility Process Originated January 2015 Reviewed June 2016
This Decision Suppt Tool has been developed using the NHS Lothian Children Continuing Health Care Allocation Tool (CCHAT, 2009) and infmation directly taken from the Department of Health (DoH) National Framewk f Children and Young People s Continuing Care (2016). The DoH National Framewk (2016) recommends the Continuing Care Process to be a three staged process completed in partnership by the NHS, Council (local authity) and third parties. The three stages are:- 1. Assessment The assessment is the first stage of the continuing care process and is led by a nominated healthcare professional. There are four areas that should be considered in the assessment. The preferences of the child and young person and their family Holistic assessment of the child and young person and their family, including a carer assessment Repts and risk assessments from the multidisciplinary team The Decision Suppt Tool f children and young people 2. Decision Making The next phase, decision-making involves a multidisciplinary, multi-agency fum such as a joint funding panel, part of a Children s Service/Trust an alternative local arrangement. This decision making process within Lothian is remitted to the Lothian Exceptional Needs Suppt group (LENS). The LENS group are responsible f deciding and agreeing bespoke packages of care f children and young people under the age of 16 with exceptional health care needs that cannot be met by existing universal and specialist services alone. 3. Development of a Care Package The final phase is the development of a care package. After a decision has been taken regarding a package of care, the Health Board, Local authity and their partners will undertake the planning and commissioning processes required to put in place a package of care. When the care is being delivered, the package will remain under regular review to ensure that the child young person s evolving needs are met. The children and young people s Decision Suppt Tool (DST) The Decision Suppt Tool developed f use within NHS Lothian is integral in determining the eligibility f a package of care suppted through the Lothian Exceptional Need Suppt group (LENS). The Decision Suppt Tool asks the nominated healthcare professional to set out the individual child / young person s needs within 10 care domains. All domains are divided into a number of levels, each of which is carefully described. F every domain there is a requirement to identify the level of description that most closely matches the individual Name: CHI: Page 2
child young person s needs. Within each care domains there is the opptunity to provide suppting infmation and rationale f this decision. The tool is not prescriptive, and evidence-based professional judgement should be exercised in all cases to ensure that the child young person s overall level of need is crectly assessed. The nominated health care professional will use their clinical skill, expertise and evidence-based professional judgement to consider what, f each care domain, is over and above what would be expected f a child young person of that age, ensuring that the infmation is concise, non judgemental, expling potential problems and trajecty. The Decision Suppt Tool is completed in partnership with the team around the child. This step draws on multi-agency assessments, child young person and family preferences, the National Practice Model (GIRFEC) and risk assessments, providing an inclusive, comprehensive and holistic approach to the assessment phase. The individual completing the Decision Suppt Tool should make sure that the child young person, parent carers representatives (where consent is given) understand and agree to what has been written. The nominated healthcare professional brings together the assessment infmation from the three other areas. At the end of the Decision Suppt Tool, a summary sheet will provide an overview of the levels chosen and of the child young person s needs. The referrer will recd the rationale f eligibility ineligibility f the respective Health suppt requested from any of the 3 NHS Lothian Services f Children & Young people 1. Package of care agreed through the Lothian Exceptional needs suppt group (LENS) 2. Complex needs Schools Health Education Suppt Service (HESS) 3. Continuing care Respite Residential service (Sunndach & Calareidh). Name: CHI: Page 3
Eligibility Process Stages The following demonstrates how the first 3 stages of the Assessment process feed into the NHS Lothian Decision Suppt Tool and Health care Eligibility Holistic assessment of child young person and their family HEALTH SOCIAL EDUCATION Preference of child young person and family/carers Repts and risk assessment from multidisciplinary team Decision Suppt Tool Ineligible Eligibility Referral to Universal /Specialist Services Referral f service Name: CHI: Page 4
Decision Suppt Tool Care Domains Section Name: CHI: Page 5
Please tick appropriate box in each section accding to the assessed need Please give details in the Comments section Care need 1. Breathing Breathing typical f age and development. Routine use of inhalers, nebulisers, airway clearance techniques / devices; care plan/ management plan in place to reduce the risk of aspiration. Episodes of acute breathlessness, which do not respond to self-management and need specialist-recommended input; requires the use of intermittent continuous oxygen therapy to prevent secondary health issues as care plan; has profoundly reduced mobility other conditions (eg: gastroesophageal reflux disease, dysphagia, dystonia), which lead to increased susceptibility to chest infection; requires daily physiotherapy to maintain optimal respiraty function; airway clearance intervention in response to changing health needs and escalation care plan. Is able to breathe unaided during the day and requires nocturnal non-invasive pressure suppt; requires intermittent / continuous high level oxygen therapy in response to changing health needs following escalation care plan; complex airway clearance intervention following care plan / management plan undertaken by a specialist practitioner; stable tracheostomy; stable nasopharyngeal airway. Severe, life-threatening breathing difficulties, which may require airway intervention; complex tracheostomy management with additional risks secondary to co-mbidities; complex nasopharyngeal management with additional risks secondary to co-mbidities; and/ altered respiraty function which requires nocturnal mechanical ventilation. No respiraty drive and dependant on continuous mechanical ventilation; no effective respiraty drive when asleep unconscious and requires mechanical ventilation ; critical tracheostomy airway, frequent occlusions / difficult to change tubes / high risk of de-cannulation and de-cannualation would be fatal. Level of Need No Additional Need Low Moderate High Severe Priity Name: CHI: Page 6
1. Breathing Date Level of Need Suppting Infmation and Rationale Name: CHI: Page 7
Please tick appropriate box in each section accding to the assessed need Please give details in the Comments section Care need Level of Need 2. Eating and Drinking Able to take adequate food and drink by mouth, to meet all nutritional No Additional Need requirements, typical of age. Some assistance required above what is typical f their age; needs supervision, prompting and encouragement with food and drinks above the typical requirement f their age; child/young person needs suppt and advice about diet because the underlying condition gives greater chance of non-compliance, including limited understanding of the consequences of food drink intake; needs feeding when this is not typical f age, but is not time consuming unsafe if general guidance is adhered to. Needs feeding to ensure safe and adequate intake of food; feeding (including liquidised feed) is lengthy; specialised feeding plan developed by speech and language therapist; unable to take sufficient food and drink by mouth most nutritional requirements taken by artificial means, f example, via a non-problematic tube feeding device, including nasogastric tubes. Despite following specialised feeding plan by SALT and/ dietician to manage nutritional status, faltering growth persists. Dysphagia, requiring a specialised management plan developed by the speech and language therapist and multi-disciplinary team, with additional skilled intervention to ensure adequate nutrition hydration and to minimise the risk of choking, aspiration and to maintain a clear airway (f example suction); problems with intake of food and drink, requiring skilled intervention to manage nutritional status; weaning from tube feeding dependency and / recognised eating disder, with self-imposed dietary regime self-neglect, f example, anxiety and/ depression leading to intake problems placing the child/young person at risk and needing skilled intervention; problems relating to a feeding device (e.g. nasogastric tube) which require a riskassessment and management plan undertaken by a speech and language therapist and multidisciplinary team and requiring regular review and reassessment. Despite the plan, there remains a risk of choking and/ aspiration. The majity of fluids and nutritional requirements are routinely taken by intravenous means. Low Moderate High Severe Name: CHI: Page 8
2. Eating and Drinking Date Level of Need Suppting Infmation and Rationale Name: CHI: Page 9
Please tick appropriate box in each section accding to the assessed need Please give details in the Comments section Assessed Care need Level of need 3. Mobility Independently mobile as typical f age. No Additional Need Able to stand, bear their weight and move with some assistance, and mobility aids. moves with difficulty (e.g. unsteady, ataxic); irregular gait. Difficulties in standing moving even with aids, although some mobility with assistance. sleep deprivation (as opposed to wakefulness) due to underlying medical related need (such as muscle spasms, dystonia), occurring three times a night, several nights per week; unable to move in a way typical f age; cared f in single position, a limited number of positions (e.g. bed, supptive chair) due to the risk of physical harm, loss of muscle tone, tissue viability, pain on movement, but is able to assist. Unable to move in a way typical f age; cared f in single position, a limited number of positions (e.g. bed, supptive chair) due to the risk of physical harm, loss of muscle tone, tissue viability, pain on movement; needs careful positioning and is unable to assist needs me than one carer to reposition transfer; needs suppt to access curricular extracurricular activities; at a high risk of fracture due to po bone density, requiring a structured management plan to minimise risk, appropriate to stage of development; involuntary spasms placing themselves and carers at risk; extensive sleep deprivation due to underlying medical/mobility related needs occurring every one to two hours (and at least four nights a week. Completely immobile and with an unstable clinical condition such that on movement transfer there is a high risk of serious physical harm; where positioning is critical to physiological functioning life. Low Moderate High Severe Name: CHI: Page 10
3. Mobility Date Level of Need Suppting Infmation and Rationale Name: CHI: Page 11
Please tick appropriate box in each section accding to the assessed need Please give details in the Comments section Care need Level of Need 4. Continence & Elimination Continence care is routine on a day-to-day basis and typical of No Additional Need age. Incontinent of urine but managed by other means, f example, medication, regular toileting, pads, use of penile sheaths; is usually able to maintain full control over bowel movements but may have occasional faecal incontinence. Has a stoma requiring routine attention, doubly incontinent but care is routine; self-catheterisation; difficulties in toileting due to constipation, irritable bowel syndrome; requires encouragement and suppt. Continence care is problematic and requires timely intervention by a skilled practitioner trained carer; intermittent catheterisation by a trained carer care wker; has a stoma that needs extensive attention every day. Requires haemodialysis in hospital to sustain life. Requires dialysis in the home to sustain life. Low Moderate High Severe Name: CHI: Page 12
4. Continence & Elimination Date Level of Need Suppting Infmation and Rationale Name: CHI: Page 13
Please tick appropriate box in each section accding to the assessed need Please give details in the Comments Care need Level of Need 5. Skin & Tissue Viability No evidence of pressure damage a condition affecting the No Additional Needs skin. Evidence of pressure damage a min wound requiring treatment; skin condition that requires clinical reassessment less than weekly; well established stoma which requires routine care; has a tissue viability plan which requires regular review. Open wound(s), which is (are) responding to treatment; active skin condition requiring a minimum of weekly reassessment and which is responding to treatment; high risk of skin breakdown that requires preventative intervention from a skilled carer care wker several times each day, without which skin integrity would break down; tracheostomy requiring routine care. Open wound(s), which is (are) not responding to treatment and require a minimum of daily moniting/reassessment; active long-term skin condition, which requires a minimum of daily moniting reassessment; Specialist dressing regime, several times weekly, which is responding to treatment and requires regular supervision. Life-threatening skin conditions burns requiring complex, painful dressing routines over a prolonged period. Low Moderate High Severe Name: CHI: Page 14
5. Skin & Tissue Viability Date Level of Need Suppting Infmation and Rationale Name: CHI: Page 15
Please tick appropriate box in each section accding to the assessed need Please give details in the Comments section Care need Level of Need 6. Communication Able to understand communicate clearly, verbally nonverbally, within their primary language, appropriate to their No Additional Need developmental level. The child/young person s ability to understand communicate is appropriate f their age and developmental level within their first language. Needs prompting assistance to communicate their needs. The child/young person s ability to understand and communicate is typical 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. Low Family/carers may be able to anticipate needs through nonverbal signs due to familiarity with the individual. Communication of emotions and fundamental needs is difficult to understand interpret, even when prompted, unless with familiar people, and requires regular suppt. Family/carers may be able to anticipate and interpret the child/ young person s needs due to familiarity. suppt is always required to facilitate communication, f example, the use of choice boards, signing and communication aids. ability to communicate basic needs is variable depending on fluctuating mood; the child/young person demonstrates severe frustration about their communication, f example, through withdrawal. Even with frequent significant suppt from family/carers and professionals, the child/young person is rarely able to communicate basic needs, requirements ideas, even with familiar people. Moderate High Name: CHI: Page 16
6. Communication Date Level of Need Suppting Infmation and Rationale Name: CHI: Page 17
Please tick appropriate box in each section accding to the assessed need Please give details in the Comments section Care need Level of need 7. Drug Therapies & Medications Parent, infmal carer self-administered medicine as No Additional Need appropriate f age. Requires a suitably trained family member, fmal carer, Low 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 Moderate nurse, fmal employed carer, teaching assistant family member specifically trained f this task, appropriately trained others; moniting because of potential fluctuation of the medical condition that can be non-problematic to manage; sleep deprivation due to essential medication management occurring me than once a night (and at least twice a week). Has a drug regime that requires management by a registered High 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 Severe 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 and/ requires continuous intravenous medication, which if stopped would be life threatening (e.g. epoprostenol infusion). Has a medicine regime that requires at least daily management by a registered nurse and reference to a medical practitioner to ensure effective symptom and pain management associated with a rapidly changing/deteriating condition, where one-to-one moniting of symptoms and their management is essential. Priity Name: CHI: Page 18
7. Drug Therapies & Medications Date Level of Need Suppting Infmation and Rationale Name: CHI: Page 19
Please tick appropriate box in each section accding to the assessed need Please give details in the Comments section Care need Level of Need 8. Psychological & Emotional Needs Psychological emotional needs are apparent but typical of No Additional Need age and similar to those of peer group. Periods of emotional distress (anxiety, mildly lowered mood) not dissimilar to those typical of age and peer group, which subside and are self-regulated by the child/young person, with prompts/ reassurance from peers, family members, carers and/ staff within the wkfce. Requires prompts significant suppt to remain within existing infrastructure; periods of variable attendance in school/college; noticeably fluctuating levels of concentration. Self-care is notably lacking (and falls outside of cultural/peer group nms and trends), which may demand prolonged intervention from additional key staff; self-harm, but not generally high risk; evidence of low moods, depression, anxiety periods of distress; reduced social functioning and increasingly solitary, with a marked withdrawal from social situations; limited response to prompts to remain within existing infrastructure (marked deteriation in attendance/attainment / deteriation in self-care outside of cultural/peer group nms and trends). Rapidly fluctuating moods of depression, necessitating specialist suppt and intervention, which have a severe impact on the child/young person s health and well-being to such an extent that the individual cannot engage with daily activities such as eating, drinking, sleeping which place the individual others at risk; acute and/ prolonged presentation of emotional/psychological deregulation, po impulse control placing the young person others at serious risk, and/ symptoms of serious mental illness that places the individual others at risk; this will include high-risk, self-harm. Low Moderate High Name: CHI: Page 20
8. Psychological & Emotional Needs Date Level of Need Suppting Infmation and Rationale Name: CHI: Page 21
Please tick appropriate box in each section accding to the assessed need Please give details in the Comments section Care need Level of Need 9. Seizures No evidence of seizures. No Additional Need Histy of seizures but none in the last three months; medication (if any) is stable; occasional absent seizures and there is a low risk of harm. Occasional seizures periods of unconsciousness, including absences, that have occurred within the last three months which require the supervision of a carer 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 weekly 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; requires moniting and intervention f autonomic stming episodes (e.g. using infusion pumps); altered consciousness. 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; coma. Low Moderate High Severe Priity Name: CHI: Page 22
9. Seizures Date Level of Need Suppting Infmation and Rationale Name: CHI: Page 23
Please tick appropriate box in each section accding to the assessed need Please give details in the Comments section Care need Level of Need 10. Challenging Behaviour * Some incidents of behaviour which challenge parents/carers/staff but which do not No Additional Need exceed expected behaviours f age stage of development and which can be managed within mainstream services (e.g. early years suppt, health visiting, school). Challenging behaviours which are me frequent, me intense me unusual than those expected at the age/stage of development, which are starting to have a negative impact on family/everyday life. Low Demonstrates a fluctuating ability to self-regulate behaviours in maintaining personal safety and development, despite specialist health intervention, in any environment. Likely to require weekly multi-agency involvement to maintain existing infrastructure, and additional high-level suppt from several agencies. challenging behaviours such as aggression (e.g., hitting, kicking, biting, hair-pulling), destruction (e.g., ripping clothes, breaking windows, throwing objects), self-injury (e.g., head banging, self-biting, skin picking), tantrums other behaviours (e.g. running away, eating inedible objects,), which have a negative impact on quality of life f the child and their family. 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 consistently po ability to self-regulate behaviours in maintaining personal safety and development, despite specialist health intervention, in any environment. Likely to require ongoing, 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. frequent intense behaviours such as aggression (e.g., hitting, kicking, biting, hairpulling), destruction (e.g., ripping clothes, breaking windows, throwing objects), self-injury (e.g., head banging, self-biting, skin picking), tantrums other behaviours (e.g. running away, eating inedible objects,), which have a significant negative impact on quality of life f the child (e.g. impact on health, development, accessing education and social activities) and their family (e.g. reducing social contact, impact on siblings, parent s wk affected, etc.) 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; 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; sustained behaviours that demonstrate the impairment of a child/young person s personal growth and development through an inability to access necessary resources. high frequency and/ intensity challenging behaviours which threaten the immediate safety of the child those around them (e.g. self-injurious behaviours aggressive behaviours) and restrict every day activities and/ lead to exclusion from services put home school placement at risk. Moderate High Severe Priity Name: CHI: Page 24
10. Challenging Behaviour Date Level of Need Suppting Infmation and Rationale Name: CHI: Page 25
1 Breathing 2 Eating and Drinking 3 Mobility 4 Continence Elimination 5 Skin & Tissue Viability 6 Communication 7 Drug Therapies & Medications 8 Physiological & Emotional 9 Seizures 10 Challenging Behaviour* Children and Young People Healthcare Needs Eligibility Process Level of Need P P P P S S S S S S S S H H H H H H H H H H M M M M M M M M M M L L L L L L L L L L N N N N N N N N N N * Children s Acute services are not remitted by NHS Lothian to agree suppt any level of need recded within the care domain relating directly to Challenging Behaviour. Children and young people referred to any of the 3 services noted who are recognised as having a level of need within this domain will be directed to the relevant decision making group/personnel within NHS Lothian Eligibility f care package through Lothian Exceptional needs Suppt group (LENS) Any level of need recded as below meets the Eligibility criteria f continuing care and referral to the to the LENS group f a package of care Reside within Lothian Active patient on Community Children s Nursing Service caseload One priity rating across any of the Three available domains Three severe ratings across the Seven available domains Eligibility Criteria f Health & Education Suppt Service (HESS) Where the level of need recded as below meets the Eligibility criteria f Health & Education Suppt Service (HESS) a referral should be submitted to the service f the child to receive the appropriate level of suppt to attend the allocated Education establishment Name: CHI: Page 26
Reside within Lothian Active patient on Community Children s Nursing Service caseload Minimum of One high rating from domains 1 4 Eligibility Criteria f Continuing Care Service (Sunndach & Calareidh) Where the level of need recded as below meets the Eligibility criteria f Continuing care service (Sunndach & Calareidh) a referral should be submitted to the service f the child to receive the appropriate level of suppt to attend f respite suppt and residential care Reside within Lothian Has been diagnosed with a severe/profound Learning Disability Is wheelchair dependent Active patient on Community Children s Nursing Service caseload One priity rating across any of the Three available domains Two severe ratings from domains 1,2,7, 9 Five high ratings across the Nine available domains & Three moderate ratings across the nine available domains Ineligibility f Service Any other combination of level of need recded which differs from the above will not meet the eligibility criteria and referral f the relevant service provision. Healthcare professionals should be mindful that even if the child young person is assessed as not having continuing care needs, they may require other healthcare input from universal services community children young person s nursing other specialist services. Summary & Recommendation Eligible f service Ineligible f service Rationale f Decision Name: CHI: Page 27
Completed by Professionals Involved in Completion of the DST NAME TITLE Please note below any views of the child / young person and parent / carer on the completion of the DST that have not already been captured, within the Suppting Infmation and Rationale section. Where they agree disagree, this should be recded Signature of parent / carer Signature of Parent / Carer: Signature of Health Care Professional Print Name: Relationship to Child /Young person: Print Name: Designation: Date: Name: CHI: Page 28