Appendix 1: Guidance for Completion of the Continuing Care Pre-assessment checklist

GUIDANCE FOR COMPLETION OF THE CHILDREN AND YOUNG PEOPLE’S CONTINUING CARE PRE-ASSESSMENT CHECKLIST

Complete all details in each section for the first four pages of the pre-assessment checklist. It is important that names and contact details of all professionals involved in the child’s care are detailed on pages 3 and 4 as the Continuing Care Assessor will need to make contact to collate information relating to the individual’s health needs.

Please also ensure that parents are aware the pre-assessment checklist is being completed and sent to the Complex and Continuing Care team; and that parents or the young person if aged 16 and above have given their consent for a Continuing Care assessment to be undertaken.

Please attach any information that will support the CCG in determining whether a full assessment is required:

  • Social care assessment
  • Correspondence from medical professionals
  • Education and Healthcare Plan
  • Care Plans from the Provider
  • Person Centred Plan
  • Incident Data
  • Risk Assessments

It is always helpful to send as much information as you have available in order that the CCG can make an informed decision as to whether a Continuing Care assessment is required.

If the Continuing Care Pre-assessment determines the child or young person has a ‘high’ level of need in at least three domains of care OR A ‘severe’ or priority’ level of need in at least one domain careplease submit the pre-assessment checklist to the CCG for consideration of a full Continuing Care Assessment to:

DOMAINS:

On pages 6 to 15, please consider the following prompts when completing the ‘Supporting Evidence’ Section in the following domains:

Breathing:

  • If breathing difficulties, what is their diagnosis?
  • If prone to chest infections, how many in the last twelve months and have these resulted in hospital admissions?
  • Are they prescribed prophylactic antibiotics?
  • What medication is prescribed to support with breathing?
  • If suction is required, what is the frequency of this?
  • Do they have any equipment to assist with breathing for example a nebuliser, cough assist machine, suction machine or ventilator?
  • What professionals are involved in monitoring breathing and are reports available?

Eating and Drinking:

  • How does the person receive their nutrition?
  • If an oral diet, do they need feeding and are they at risk of choking?
  • If enterally via gastrostomy, jejunostomy or naso-gastric tube, please specify and indicate the feed regime.
  • Are they underweight or overweight?
  • Do they have an eating disorder?
  • Is a SALT involved regarding dysphagia – please include report if available.
  • Do they have an adequate nutritional intake?

Mobility:

  • What equipment does the child/young person require to support with mobility?
  • Are they able to weight bear?
  • Are they at risk of falls?
  • Do they require hoisting for transfers?
  • Do they require support of one person or two for moving and handling?
  • Are they at risk of harm during transfers?
  • Are they prescribed any medication for spasms?
  • Do they have physiotherapy? If yes, is a report available?

Continence or Elimination:

  • Is the individual continent, do they experience urinary incontinence or are they doubly incontinent?
  • Do they require the use of continence products?
  • Is the individual known to the Continence Service?
  • Do they have a catheter/stoma and do they require support with this?
  • Do they experience constipation? How is this managed?

Skin and Tissue Viability:

  • Are they at risk of skin damage due to limited mobility or a diagnosed skin condition?
  • Do they have any open wounds? If so, who is this monitored by and does it require dressing?
  • Are they prescribed anything topically or orally to manage a skin condition?

Communication:

  • How does the young person communicate?
  • Can they communicate their basic needs such as the need for a drink, food, toilet, pain and discomfort?
  • Do they require additional support via communication aids to enable them to communicate their basic needs?
  • Can familiar carers/parents determine what the child/young person is communicating?
  • Do they have SALT input?
  • Include professional reports relating to communication where available.

Drug Therapies and Medication:

  • Do parents administer medication or are they able to self-administer?
  • What medication is prescribed?
  • How often is the medication regime reviewed and by whom?

Psychological and Emotional Needs:

  • What support are they receiving currently?
  • What is the frequency of appointments?
  • What is the level of engagement with the support?
  • Do they have a diagnosed mental illness?
  • Do they display risky behaviours ie self-harming, or substance misuse?
  • Do they have any periods of emotional distress (anxiety, low moods)?
  • Do they have reduced social functioning?
  • Do they have poor impulse control?

Seizures:

  • What seizure types are experienced?
  • How frequently do these occur?
  • What medication is prescribed for seizure management?
  • Is rescue medication prescribed? How often is this administered?
  • Have there been hospital admissions as a result of seizure activity in the last twelve months?
  • Does the child have involvement from an Epilepsy Specialist Nurse? If so, is a report available?

Challenging Behaviour:

  • What type of behaviours are exhibited and how often, what are the triggers to behaviour occurring and what is the impact of the behaviour?
  • Include incident data if available.
  • Mention professionals involved in management of behaviour.
  • Include professional reports relating to behaviour where available.

All domains of care need to be completed, even if there is no identified need in this area.

NEXT STEPS

If the CCG receive an incomplete Pre-Assessment Checklist; this will be returned to the Referrer for further information if required.

The pre-assessment checklist will be considered by the Complex and Continuing Care team. The Referrer will be notified whether a Continuing Care assessment will be undertaken or whether the child/young person has been screened out.

If a Continuing Care assessment will be undertaken, the Referrer will be advised of the Assessor undertaking this in order that a meeting can be co-ordinated.

It is expected the Referrer will notify the family of the outcome of the Pre-assessment checklist.

Appendix 2 Children Checklist

Name:

DOB:

NHS Number:

Children and young people’s continuing care pre-assessment checklist

Child or young person’s details
Name
Date of birth / NHS Number
Address
Gender (delete as appropriate) / MALE / FEMALE
First language (if not English) / Translator needed
Other communication
support needed
Mother’s name / Father’s name
Contact no. / Contact no.
NB. If the child is born after Dec 1st 2003 the father must be named on the birth certificate to have parental responsibility unless application to the court has been granted
If parental responsibility is not held by parents
Parental responsibility held by
MANDATORY / Contact no.
E-mail
Basis of parental responsibility (e.g. legal guardian, LA section 20 etc.) / Address
Address of GP practice
Name of GP (if child or young person has a named doctor)
Clinical commissioning group (where known):
Local authority (where known)
Medical history
Provide a brief summary below of the child or young person’s primary health needs, with details of any diagnoses and provision.
Social care
Provide a brief summary below of the child or young person’s social care needs with details of any arrangements in place.
Education
Name of nursery, school or college attending
Year group
Contact details (where known)
What additional support or reasonable adjustments are required in that setting?
Does the child or young person have special educational needs?
Consent
Please obtain verbal consent
This referral cannot be accepted without consent / Child / Young Person / Parent / Carer
They are aware that a referral has been made and consented to the sharing and obtaining of information to support this application (delete as appropriate). / Yes / No / Yes / No
They have been involved / contributed to the completion of this referral/checklist?
(delete as appropriate). / Yes / No / Yes / No
Details of pre-assessment
Date of pre-assessment (completion)
Name of assessor
(use the box below for details of other contributors.)
Employer
Contact no.
E-mail
How was the referral for continuing care made?
If other individuals / organisations support the child or young person, and have contributed to the pre-assessment, please give details below. Supportive evidence can be attached.
1. / Name
Organisation
Role in relation to the child or young person
Nature of contribution (e.g. report, advice, multi-professional team meeting etc.)
Contact no.
E-mail
2. / Name
Organisation
Nature of contribution
Nature of contribution
Contact no.
E-mail
3. / Name
Organisation
Nature of contribution
Nature of contribution
Contact no.
E-mail
4. / Name
Organisation
Nature of contribution
Contact no.
E-mail
Existing assessments
Provide details below of any relevant assessments made in the last 2 years (e.g. CAF, Education, Health and Care plan or Statement of SEND, CAMHS assessments). Summary plans or other evidence can be attached.
Pre Assessment Checklist
Please complete the following checklist - tick All the descriptions ( this may be more than one) that most appropriately apply to child or young person you think requires a full assessment.
If no descriptions apply and you think the child or young person’shealth needs cannot be met through mainstream health services please discuss in person with the Children’s Nurse Specialist in ELR CCG.
NOTE: evidence will be required to support the descriptor at full assessment stage eg/ behaviour charts, apnoea charts, seizure charts, pain and sleep charts, nursing and care records
Breathing / Tick the appropriate box
Description
Requires high flow air / oxygen to maintain respiratory function overnight or for the majority of the day and night.
Is able to breath unaided during the day but needs to go onto a ventilator for supportive ventilation. The ventilation can be discontinued for up to 24 hours without clinical harm.
Requires continuous high level oxygen dependency, determined by clinical need.
Has a need for daily oral pharyngeal and/or nasopharyngeal suction with a management plan undertaken by a specialist practitioner.
Has a stable tracheostomy that can be managed by the child or young person or only requires minimal and predictable suction / care from a carer.
Has frequent, hard-to-predict apnoea (not related to seizures).
Has severe, life-threatening breathing difficulties, which require essential oral pharyngeal and/or nasopharyngeal suction, day or night.
Has a tracheostomy tube that requires frequent essential interventions (additional to routine care) by a fully trained carer, to maintain an airway.
Requires ventilation at night for very poor respiratory function; has respiratory drive and would survive accidental disconnection, but would be unwell and may require hospital support.
Unable to breath independently and requires permanent mechanical ventilation.
Has no respiratory drive when asleep or unconscious and requires ventilation, disconnection of which could be fatal.
A highly unstable tracheostomy, frequent occlusions and difficult to change tubes.
Eating and Drinking
Faltering growth, despite following specialised feeding plan by a speech and language therapist and/or dietician to manage nutritional status.
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 through suction).
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.
Problems with intake of food and drink (which could include vomiting), 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.
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.
The majority of fluids and nutritional requirements are routinely taken by intravenous means.
Mobility
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.
At a high risk of fracture due to poor 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 or transfer there is a high risk of serious physical harm.
Positioning is critical to physiological functioning or life.
Continence and Elimination
Continence care is problematic and requires timely intervention by a skilled practitioner or trained carer.
Needs intermittent catheterisation by a trained carer or care worker.
Has a stoma that needs extensive attention every day.
Requires haemodialysis in hospital to sustain life.
Requires dialysis in the home to sustain life.
Skin and tissue viability
Has open wound(s), which is (are) not responding to treatment and require a minimum of daily monitoring/reassessment.
Has an active long-term skin condition, which requires a minimum of daily monitoring or reassessment.
Has a specialist dressing regime, several times weekly, which is responding to treatment and requires regular supervision.
Has life-threatening skin conditions or burns requiring complex, painful dressing routines over a prolonged period.
Communication
The child or young person is rarely able to communicate basic needs, requirements or ideas, even with frequent or significant support from family/carers and professionals.
Drug therapies and medication
Has a drug regime requires management by a registered nurse at least weekly, due to a fluctuating and/or unstable condition.
Has sleep deprivation caused by severe distress due to pain requiring medication management – occurring four times a night (and four times a week).
Requires monitoring and intervention for autonomic storming episodes.
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.
Has extensive sleep deprivation caused by severe intractable pain requiring essential pain medication management – occurring every one to two hours.
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/deteriorating condition, where one-to-one monitoring of symptoms and their management is essential.
Psychological and emotional needs
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).
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.
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.
Seizures
Tonic-clonic seizures requiring rescue medication on a weekly basis.
Has 4 or more tonic-clonic seizures at night.
Has severe uncontrolled seizures, occurring at least daily. Seizures often do not respond to rescue medication and the child or young person needs hospital treatment on a regular basis. This results in a high probability of risk to his/her self.
Challenging Behaviours
Has regular 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), or other behaviours (e.g. running away, eating inedible objects), despite specialist health intervention and which have a negative impact on the child and their family / everyday life.
Has frequent, intense behaviours such as aggression, destruction, self-injury, despite intense multi-agency support, which have a profoundly negative impact on quality of life for the child and their family, and risk exclusion from the home or school.
Has challenging behaviours of such a high frequency and intensity, despite intense multi-agency support, which threaten the immediate safety of the child or those around them and restrict every day activities (e.g. exclusion from school or home environment).
Relevant additional information
Name / Signature
Designation / Date

Appendix 3: C CARE CONSENT FORM MIDS AND LANCS