nhs lothian decision support tool children and young ... · pdf filesupporting information and...

NHS Lothian Decision Support Tool

Children and Young People

Healthcare Needs Eligibility Process

Originated January 2015 Reviewed June 2016

Children and Young People Healthcare Needs Eligibility Process

Name: CHI:

This Decision Support Tool has been developed using the NHS Lothian Children Continuing Health Care Allocation Tool (CCHAT, 2009) and information directly taken from the Department of Health (DoH) National Framework for Children and Young People’s Continuing Care (2016). The DoH National Framework (2016) recommends the Continuing Care Process to be a three staged process completed in partnership by the NHS, Council (local authority) 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

Reports and risk assessments from the multidisciplinary team

The Decision Support Tool for children and young people 2. Decision Making The next phase, decision-making involves a multidisciplinary, multi-agency forum such as a joint funding panel, part of a Children’s Service/Trust or an alternative local arrangement. This decision making process within Lothian is remitted to the Lothian Exceptional Needs Support group (LENS). The LENS group are responsible for deciding and agreeing bespoke packages of care for 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 authority 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 or young person’s evolving needs are met. The children and young people’s Decision Support Tool (DST) The Decision Support Tool developed for use within NHS Lothian is integral in determining the eligibility for a package of care supported through the Lothian Exceptional Need Support group (LENS). The Decision Support 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. For every domain there is a requirement to identify the level of description that most closely matches the individual


Name: CHI:

child or young person’s needs. Within each care domains there is the opportunity to provide supporting information and rationale for this decision. The tool is not prescriptive, and evidence-based professional judgement should be exercised in all cases to ensure that the child or young person’s overall level of need is correctly assessed. The nominated health care professional will use their clinical skill, expertise and evidence-based professional judgement to consider what, for each care domain, is over and above what would be expected for a child or young person of that age, ensuring that the information is concise, non judgemental, exploring potential problems and trajectory. The Decision Support Tool is completed in partnership with the team around the child. This step draws on multi-agency assessments, child or 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 Support Tool should make sure that the child or young person, parent or carers or representatives (where consent is given) understand and agree to what has been written. The nominated healthcare professional brings together the assessment information from the three other areas. At the end of the Decision Support Tool, a summary sheet will provide an overview of the levels chosen and of the child or young person’s needs. The referrer will record the rationale for eligibility or ineligibility for the respective Health support requested from any of the 3 NHS Lothian Services for Children & Young people

1. Package of care agreed through the Lothian Exceptional needs support group (LENS)

2. Complex needs Schools – Health Education Support Service (HESS) 3. Continuing care Respite Residential service (Sunndach & Calareidh).


Name: CHI:

Eligibility Process Stages

The following demonstrates how the first 3 stages of the Assessment process feed into the NHS Lothian Decision Support Tool and Health care Eligibility

Holistic assessment of child or young person and their family

HEALTH SOCIAL EDUCATION

Preference of child or young person and family/carers

Reports and risk assessment from multidisciplinary team

Decision Support Tool

Ineligible

Eligibility

Referral to Universal /Specialist Services

Referral for service


Name: CHI:

Decision Support Tool Care Domains Section


Name: CHI:

Please tick appropriate box in each section according to the assessed need Please give details in the Comments section

Care need Level of Need 1. Breathing Breathing typical for age and development. No Additional

Need

Routine use of inhalers, nebulisers, airway clearance techniques / devices; or care plan/ management plan in place to reduce the risk of aspiration.

Low

Episodes of acute breathlessness, which do not respond to self-management and need specialist-recommended input; or requires the use of intermittent or continuous oxygen therapy to prevent secondary health issues as care plan; or has profoundly reduced mobility or other conditions (eg: gastroesophageal reflux disease, dysphagia, dystonia), which lead to increased susceptibility to chest infection; or requires daily physiotherapy to maintain optimal respiratory function; or airway clearance intervention in response to changing health needs and escalation care plan.

Moderate

Is able to breathe unaided during the day and requires nocturnal non-invasive pressure support; or requires intermittent / continuous high level oxygen therapy in response to changing health needs following escalation care plan; or complex airway clearance intervention following care plan / management plan undertaken by a specialist practitioner; or stable tracheostomy; or stable nasopharyngeal airway.

High

Severe, life-threatening breathing difficulties, which may require airway intervention; or complex tracheostomy management with additional risks secondary to co-morbidities; or complex nasopharyngeal management with additional risks secondary to co-morbidities; and/or altered respiratory function which requires nocturnal mechanical ventilation.

Severe

No respiratory drive and dependant on continuous mechanical ventilation; or no effective respiratory drive when asleep or unconscious and requires mechanical ventilation ; or critical tracheostomy airway, frequent occlusions / difficult to change tubes / high risk of de-cannulation and de-cannualation would be fatal.

Priority


Name: CHI:

1. Breathing Date Level of Need Supporting Information and Rationale


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Care need Level of Need 2. Eating and Drinking Able to take adequate food and drink by mouth, to meet all nutritional requirements, typical of age.

No Additional Need

Some assistance required above what is typical for their age; or needs supervision, prompting and encouragement with food and drinks above the typical requirement for their age; or child/young person needs support and advice about diet because the underlying condition gives greater chance of non-compliance, including limited understanding of the consequences of food or drink intake; or needs feeding when this is not typical for age, but is not time consuming or unsafe if general guidance is adhered to.

Low

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; or unable to take sufficient food and drink by mouth – most nutritional requirements taken by artificial means, for example, via a non-problematic tube feeding device, including nasogastric tubes.

Moderate

Despite following specialised feeding plan by SALT and/or dietician to manage nutritional status, faltering growth persists. or 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 or hydration and to minimise the risk of choking, aspiration and to maintain a clear airway (for example suction); or problems with intake of food and drink, requiring skilled intervention to manage nutritional status; weaning from tube feeding dependency and / recognised eating disorder, with self-imposed dietary regime or self-neglect, for example, anxiety and/or depression leading to intake problems placing the child/young person at risk and needing skilled intervention; or problems relating to a feeding device (e.g. nasogastric tube) which require a risk-assessment and management plan undertaken by a speech and language therapist and multidisciplinary team and requiring regular review and reassessment. Despite the plan, there remains a risk of choking and/or aspiration.

High

The majority of fluids and nutritional requirements are routinely taken by intravenous means.

Severe


Name: CHI:

2. Eating and Drinking Date Level of Need Supporting Information and Rationale


Name: CHI:


Assessed Care need Level of need 3. Mobility Independently mobile as typical for age. No Additional Need

Able to stand, bear their weight and move with some assistance, and mobility aids. or moves with difficulty (e.g. unsteady, ataxic); irregular gait.

Low

Difficulties in standing or moving even with aids, although some mobility with assistance. or 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; or unable to move in a way typical for age; cared for in single position, or a limited number of positions (e.g. bed, supportive chair) due to the risk of physical harm, loss of muscle tone, tissue viability, or pain on movement, but is able to assist.

Moderate

Unable to move in a way typical for age; cared for in single position, or a limited number of positions (e.g. bed, supportive chair) due to the risk of physical harm, loss of muscle tone, tissue viability, or pain on movement; needs careful positioning and is unable to assist or needs more than one carer to reposition or transfer; or needs support to access curricular or extracurricular activities; or at a high risk of fracture due to poor bone density, requiring a structured management plan to minimise risk, appropriate to stage of development; or involuntary spasms placing themselves and carers at risk; or extensive sleep deprivation due to underlying medical/mobility related needs – occurring every one to two hours (and at least four nights a week.

High

Completely immobile and with an unstable clinical condition such that on movement or transfer there is a high risk of serious physical harm; or where positioning is critical to physiological functioning or life.

Severe


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3. Mobility Date Level of Need Supporting Information and Rationale


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Care need Level of Need 4. Continence & Elimination Continence care is routine on a day-to-day basis and typical of age.

No Additional Need

Incontinent of urine but managed by other means, for example, medication, regular toileting, pads, use of penile sheaths; or is usually able to maintain full control over bowel movements but may have occasional faecal incontinence.

Low

Has a stoma requiring routine attention, or doubly incontinent but care is routine; or self-catheterisation; or difficulties in toileting due to constipation, or irritable bowel syndrome; requires encouragement and support.

Moderate

Continence care is problematic and requires timely intervention by a skilled practitioner or trained carer; or intermittent catheterisation by a trained carer or care worker; or has a stoma that needs extensive attention every day. or Requires haemodialysis in hospital to sustain life.

High

Requires dialysis in the home to sustain life. Severe


Name: CHI:

4. Continence & Elimination Date Level of Need Supporting Information and Rationale


Name: CHI:

Please tick appropriate box in each section according to the assessed need Please give details in the Comments

Care need Level of Need 5. Skin & Tissue Viability No evidence of pressure damage or a condition affecting the skin.

No Additional Needs

Evidence of pressure damage or a minor wound requiring treatment; or skin condition that requires clinical reassessment less than weekly; or well established stoma which requires routine care; or has a tissue viability plan which requires regular review.

Low

Open wound(s), which is (are) responding to treatment; or active skin condition requiring a minimum of weekly reassessment and which is responding to treatment; or high risk of skin breakdown that requires preventative intervention from a skilled carer or care worker several times each day, without which skin integrity would break down; or tracheostomy requiring routine care.

Moderate

Open wound(s), which is (are) not responding to treatment and require a minimum of daily monitoring/reassessment; or active long-term skin condition, which requires a minimum of daily monitoring or reassessment; or Specialist dressing regime, several times weekly, which is responding to treatment and requires regular supervision.

High

Life-threatening skin conditions or burns requiring complex, painful dressing routines over a prolonged period.

Severe


Name: CHI:

5. Skin & Tissue Viability Date Level of Need Supporting Information and Rationale


Name: CHI:


Care need Level of Need 6. Communication Able to understand or communicate clearly, verbally or non-verbally, within their primary language, appropriate to their developmental level. The child/young person’s ability to understand or communicate is appropriate for their age and developmental level within their first language.

No Additional Need

Needs prompting or assistance to communicate their needs. The child/young person’s ability to understand and communicate is typical for their age and recognised developmental milestones. Special effort may be needed to ensure accurate interpretation of needs, or may need additional support visually – either through touch or with hearing.

Family/carers may be able to anticipate needs through non-verbal signs due to familiarity with the individual.

Low

Communication of emotions and fundamental needs is difficult to understand or interpret, even when prompted, unless with familiar people, and requires regular support. Family/carers may be able to anticipate and interpret the child/ young person’s needs due to familiarity. or support is always required to facilitate communication, for example, the use of choice boards, signing and communication aids. or ability to communicate basic needs is variable depending on fluctuating mood; the child/young person demonstrates severe frustration about their communication, for example, through withdrawal.

Moderate

Even with frequent or significant support from family/carers and professionals, the child/young person is rarely able to communicate basic needs, requirements or ideas, even with familiar people.

High


Name: CHI:

6. Communication Date Level of Need Supporting Information and Rationale


Name: CHI:


Care need Level of need 7. Drug Therapies & Medications Parent, informal carer or self-administered medicine as appropriate for age.

No Additional Need

Requires a suitably trained family member, formal carer, teaching assistant, nurse or appropriately trained other to administer medicine due to:

age non-compliance type of medicine; route of medicine; and/or

site of medication administration

Low

Requires administration of medicine regime by a registered nurse, formal employed carer, teaching assistant or family member specifically trained for this task, or appropriately trained others; or monitoring because of potential fluctuation of the medical condition that can be non-problematic to manage; or sleep deprivation due to essential medication management – occurring more than once a night (and at least twice a week).

Moderate

Has a drug regime that requires management by a registered nurse (within prescription) at least weekly, due to a fluctuating and/or unstable condition or symptom management; or sleep deprivation caused by severe distress due to pain requiring medication management – occurring four times a night (and four times a week).

High

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/deteriorating condition; and/or extensive sleep deprivation caused by severe intractable pain requiring essential pain medication management – occurring every one to two hours and/or requires continuous intravenous medication, which if stopped would be life threatening (e.g. epoprostenol infusion).

Severe

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/deteriorating condition, where one-to-one monitoring of symptoms and their management is essential.

Priority


Name: CHI:

7. Drug Therapies & Medications Date Level of Need Supporting Information and Rationale


Name: CHI:


Care need Level of Need 8. Psychological & Emotional Needs Psychological or emotional needs are apparent but typical of age and similar to those of peer group.

No Additional Need

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/or staff within the workforce.

Low

Requires prompts or significant support 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 norms and trends), which may demand prolonged intervention from additional key staff; self-harm, but not generally high risk; or evidence of low moods, depression, anxiety or 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 deterioration in attendance/attainment / deterioration in self-care outside of cultural/peer group norms and trends).

Moderate

Rapidly fluctuating moods of depression, necessitating specialist support 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 or which place the individual or others at risk; or acute and/or prolonged presentation of emotional/psychological deregulation, poor impulse control placing the young person or others at serious risk, and/or symptoms of serious mental illness that places the individual or others at risk; this will include high-risk, self-harm.

High


Name: CHI:

8. Psychological & Emotional Needs Date Level of Need Supporting Information and Rationale


Name: CHI:


Care need Level of Need 9. Seizures No evidence of seizures. No Additional Need

History of seizures but none in the last three months; medication (if any) is stable; or occasional absent seizures and there is a low risk of harm.

Low

Occasional seizures or 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; or sleep deprivation due to essential seizure management, occurring three times a night.

Moderate

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 or specially trained carer; or sleep deprivation due to essential seizure management – occurring four times a night; or requires monitoring and intervention for autonomic storming episodes (e.g. using infusion pumps); or altered consciousness.

High

Severe uncontrolled seizures, daily or more, 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 or others.

Severe

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; or coma.

Priority


Name: CHI:

9. Seizures Date Level of Need Supporting Information and Rationale


Name: CHI:


Care need Level of Need 10. Challenging Behaviour * Some incidents of behaviour which challenge parents/carers/staff but which do not exceed expected behaviours for age or stage of development and which can be managed within mainstream services (e.g. early years support, health visiting, school).

No Additional Need

Challenging behaviours which are more frequent, more intense or more 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 support from several agencies.or 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 or other behaviours (e.g. running away, eating inedible objects,), which have a negative impact on quality of life for the child and their family.

Moderate

Demonstrates a fluctuating poor 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 support from several agencies.

High

Demonstrates a consistently poor 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 support from several agencies. Usually requires direct specialist clinical assessment, treatment and review from specialist healthcare professionals in addition to those of frontline service. or frequent or intense 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 or other behaviours (e.g. running away, eating inedible objects,), which have a significant negative impact on quality of life for 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 work affected, etc.)

Severe

Demonstrates a consistent poor ability to self-regulate behaviours in maintaining personal safety and development, despite specialist health intervention, whereby the physical health and safety of the person or others is likely to be placed in serious jeopardy;or 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;or sustained behaviours that demonstrate the impairment of a child/young person’s personal

growth and development through an inability to access necessary resources.or

high frequency and/or intensity challenging behaviours which threaten the immediate safety of the child or those around them (e.g. self-injurious behaviours or aggressive behaviours) and restrict every day activities and/or lead to exclusion from services or put home or school placement at risk.

Priority


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10. Challenging Behaviour Date Level of Need Supporting Information and Rationale


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Level of Need

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* Children’s Acute services are not remitted by NHS Lothian to agree or support any level of

need recorded 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 for care package through Lothian Exceptional needs Support group (LENS)

Any level of need recorded as below meets the Eligibility criteria for continuing care and

referral to the to the LENS group for a package of care

Reside within Lothian

Active patient on Community Children’s Nursing Service caseload

One ‘priority’ rating across any of the Three available domains or Three ‘severe’ ratings across the Seven available domains

Eligibility Criteria for Health & Education Support Service (HESS) Where the level of need recorded as below meets the Eligibility criteria for Health & Education Support Service (HESS) a referral should be submitted to the service for the child to receive the appropriate level of support to attend the allocated Education establishment


Name: CHI:



Minimum of One ‘high’ rating from domains 1 or 4 Eligibility Criteria for Continuing Care Service (Sunndach & Calareidh) Where the level of need recorded as below meets the Eligibility criteria for Continuing care service (Sunndach & Calareidh) a referral should be submitted to the service for the child to receive the appropriate level of support to attend for respite support and or residential care


Has been diagnosed with a severe/profound Learning Disability

Is wheelchair dependent


One ‘priority’ rating across any of the Three available domains or

Two ‘severe’ ratings from domains 1,2,7,or 9 or

Five ‘high’ ratings across the Nine available domains & Three ‘moderate’ ratings across the nine available domains

Ineligibility for Service Any other combination of level of need recorded which differs from the above will not meet the eligibility criteria and referral for the relevant service provision. Healthcare professionals should be mindful that even if the child or young person is assessed as not having continuing care needs, they may require other healthcare input from universal services or community children or young person’s nursing or other specialist services. Summary & Recommendation Eligible for service Ineligible for service Rationale for Decision


Name: CHI:

Completed by

Please note below any views of the child / young person and or parent / carer on the completion of the DST that have not already been captured, within the Supporting

Information and Rationale section. Where they agree or disagree, this should be recorded Signature of parent / carer

Signature of Parent / Carer:

Signature of Health Care Professional

Print Name:

Print Name:

Relationship to Child /Young person:

Designation:

Date:

Professionals Involved in Completion of the DST

NAME TITLE

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