Pathway for Continuing Care Children and Young People

CHILDREN AND YOUNG PEOPLE’S CONTINUING CARE PROCESS DOCUMENT

PATHWAY FOR CONTINUING CARE CHILDREN AND YOUNG PEOPLE

It is essential that any consideration for Continuing Care is performed via a Multi-Disciplinary Team

in the first instance

Notes

1. Multi-Disciplinary Team consider pre-assessment. If child and young person (CYP) identified as having continuing care needs; the lead health professional may liaise with the Children’s Continuing Care team (CCC) to discuss outcome of pre-assessment for advice. Otherwise if pre-assessment suggests eligibility i.e. one severe, one priority or 3 highs indicate consider a full DST completion. Consideration can be given to cases where a contribution could be made towards social care and education existing support/ packages.

1. Eligibility will be based on the CYP’s needs not being met by existing universal and specialist services demonstrated by the level of health care support the CYP requires. The MDT must determine this before moving on to complete the full DST.

1. The criteria of CYP to be eligible for assessment for continuing care is:-

• CYP under the age of 18 (if young person within a few months of 18th birthday please liaise with CCC re: most appropriate pathway.
• CYP with complex health needs that include physical disabilities, mental health, behavioural, end of life care.

1. CYP is registered with a GP within Staffordshire, or may have been placed out of county by Staffordshire/Stoke-on-Trent Local Authority – please liaise with CCC team if you are unsure which Clinical Commissioning Group has responsibility.

1. MDT completes the DST. Responsibility of completing DST remains with universal/specialist health services to complete (most appropriate health person involved).

1. The clock starts from the initial assessment phase for a CYP who may have continuing care needs (any pre-assessment should not take more than a couple of days). The National Framework provides guidance of 6 weeks from date of identification through to panel submission and thereafter if agreed to the arrangement of the provision (informing appropriate/relevant providers of healthcare).Ideally the CCC team will need to have the completed DST form, along with all the necessary supporting information, dated within 28 days for it to be inside the six week timescale.

1. Discussions with the CYP Continuing Care lead can be undertaken at any stage of the process.

1. The views of the CYP and carers/parents regarding how the CYP’s health needs may be met must be sought and included in the application form. Any conflict between CYP and carers/parents views should be stated.

1. Fast track procedures are available for CYP meeting the criteria (please liaise directly with CCC team for advice on this

1. No commitment can be made to potential providers unless approval has been granted by the Children’s Continuing Care Panel. The CCC team will ensure procurement and contractual process are followed, and thereafter clinical governance is provided.

1. Decisions are not made on funding responsibilities however, it is essential that CYP CCC team have a clear understanding of any behavioural management required for YP placed at residential/educational, and when this is needed throughout the 24 hour period. It is essential that a breakdown of costs is included from the placement provider in line with this. We will not accept any DST’s that do not have these clear breakdowns, in relation to health needs and cost of actual care provision to meet these needs (this information is available from the LA placements officer or placement itself. A cost breakdown is required to ensure the process continues, and is not held up; without this NHS CCC will not be able to contribute, as it would equate to unsafe commissioning.

1. Reviews are normally held 3 months after the inception of the commissioned service and 12 monthly thereafter. The CCC panel may indicate a different frequency of review.

1. Reviews will be co-ordinated by the CYP case holders.

1. Details of the appeals/complaint procedures are provided in this process document.

IMPORTANT INFORMATION – CONSENT REQUIRED

Please read carefully

Your child has been referred for an assessment for a Continuing Care Funded healthcare package. This will involve gathering detailed information from you and the professionals involved with your child and your family. This information will be shared with you and your child’s team so that your child’s and family’s Continuing Care needs may be accurately identified.

Throughout the assessment of needs (and following this) there will be an expectation that health, social care and education will work together to ensure a fully assessed care package is arranged according to needs.

Once the assessments are completed, there will be a planning meeting to which you will be invited, to discuss findings and make recommendations to the Commissioners (the people who will ratify the recommendations/make decisions). The planning meeting is sometimes known as a multi-disciplinary meeting (MDT).

After submission of the Decision Support Tool (to the county-wide multi-agency panel) a decision is made with regards to the submitted DST and supporting information. If a package of care is agreed arrangements will need to be made to source a provider, which the family will be made aware of. There will be a review of the care after 3 months and yearly, or as required thereafter. Please be aware that the purpose of the reviews is to ensure that the package of care remains appropriate to your child’s needs and therefore may be subject to change.

In order for us to gather and share information with other professionals we will need your consent.

Please sign this document where indicated below, to confirm that you consent to assessments taking place and for the sharing of information as detailed above. If there are any issues with information sharing please document this under the signature section.

IMPORTANT

Parental Consent required below as outlined above (inaddition to page 35)

Parent(s) / Guardian(s) Name / Signature / Date / Letter to be sent
Child/Young Person / Signature / Date / Letter to be sent

Please specify who letters need to be addressed to (including child or young person)

CHILDREN AND YOUNG PEOPLE’S CONTINUING CARE PROCESS

ASSESSMENT, RECOMMENDATION AND DECISION PROGRAMME

SECTION 1 Referral, Personal Details and Background

Family Name / Given Name(s)
DOB / Gender
Ethnicity / Language
Is an interpreter needed?
Is advocacy required to support Family or CYP? Yes/No
Family Address (including e-mail) / Current Address (if different)
Post Code / Post Code
NHS Number / Social Care Number
Family Members/Significant Others/Contacts
Name / Relationship / DOB / Contact Details
Emergency Contact Name / Telephone
GP / Responsible CCG (need to be within Staffordshire)
Practice
Address
Telephone
Child in Care / Yes / No
If YES by which Local Authority and which section:
In receipt of disability living allowance? Yes / No (Delete or tick)
If Yes which level?
Mobility level
Who has parental responsibility?
Education
School / Child/young person subject to SEN Assessment and has an Educational, Health and Care Plan? / Yes / No
School/Education contact person
Tel:
Post code / E-mail
Current support to child/family
Agency / Type of Support
Current Equipment
Type of Equipment / Purchaser / Supplier / Maintained by
Date of Assessment (DST): / Date of Pre-Assessment:
Referrers Contact Details
Name / Address
Telephone / Email
NHS Health Professional details (completing form) *Please note you (or a representative) will be expected to support at all reviews to ensure clinical oversight continues, as per the health commissioned service specification.
Name / Address
Telephone / Email
Care Category please circle
PD
Physical disability / LD
Learning disability / MH
Mental health / Palliative/EOL
End of life care

SECTION 2

Assessments

Health Assessment
Please summarise the primary health needs of the child/young person with details of any diagnoses and provision.Additional health information will be required in the Decision Support Tool section. The attached activities of daily living/24 hour diary are optional submissions that might assist the assessment process.
Social Care Assessment
Please provide a summary below of the child or young person’s social care needs with details of any arrangements in place. Please include short break provision, housing arrangements, transport, recreation and leisure.
Has a social care assessment been completed (including a carers assessment) Yes/No
Please detail and attach
Social Care package of support in place? Please detail
Education Assessment
Please provide any relevant information regarding the child or young person’s educational needs. What additional support or reasonable adjustments are required in that setting?
Risk Assessments
Please provide summary of any risks (to self or other) resulting from health needs include any information regarding the frequency, unpredictability, deterioration and instability of health needs.
* Attach all relevant risk assessments.

SECTION 3

Preferences and views of child/young person(Consider the emotional support needs of the child, young person and their family).
Did the child/young person contribute to their assessment? Yes / No
If no please indicate why not.
Were the views of the young person provided/facilitated by a representative? Yes/ No
If yes who acted as the representative and what is their status?
Name / Address / Contact Details / Status
Views and aspirations of the child or young person and their family

• The child/young person’s issues, concerns, anxieties

• The child/young person’s preferences about care delivery
• The family’s preferences about care delivery

Summary of views/preferences of child/young person
Carer/Parent Views
Please summarise views of carers/parents, and preferences about care delivery
Details of Carer providing information.
Name / Relationship to child/young Person / Contact details

Outcomes

The assessment of a child’s continuing care needs must consider the outcomes necessary to enable the child or young person to get the best from life, and outcomes relating to transition (where the child is 14 years or older), identifying unmet need

They should be specific, deliverable and linked directly to the child’s wishes. They should include where appropriate, outcomes for transition, through key changes in a young person’s life, such as changing schools, moving from children’s to adult care and/or from paediatric services to adult health, or moving on from further education to adulthood.

Children and Young People’s Decision Support Tool

The Multi-Disciplinary Team (including young person and family where appropriate) should complete the DST indicating the level of need. Please provide the relevant reports/assessments that evidence the suggested level of need, if no needs are indicated then please state N/A.

Care Domains

1. Breathing

Describe the child or young person’s specific needs relevant to this domain
Detail whether needs are unmet or met

1. Breathing – assessors should indicate the level of need

Description / Level of need
Breathing typical for age and development. / No additional needs
Routine use of inhalers, nebulisers, etc.;
or
care plan or 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
intermittent or continuous low-level oxygen therapy is needed to prevent secondary health issues;
or
supportive but not dependent non-invasive ventilation which may include oxygen therapy which does not cause life-threatening difficulties if disconnected;
or
child or young person has profoundly reduced mobility or other conditions which lead to increased susceptibility to chest infection (Gastroesophageal Reflux Disease and Dysphagia);
or
requires daily physiotherapy to maintain optimal respiratory function;
or
requires oral suction (at least weekly) due to the risk of aspiration and breathing difficulties;
or
has a history within the last three to six months of recurring aspiration/chest infections. / Moderate
Requires high flow air / oxygen to maintain respiratory function overnight or for the majority of the day and night;
or
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;
or
requires continuous high level oxygen dependency, determined by clinical need;
or
has a need for daily oral pharyngeal and/or nasopharyngeal suction with a management plan undertaken by a specialist practitioner;
or
stable tracheostomy that can be managed by the child or young person or only requires minimal and predictable suction / care from a carer. / High
Has frequent, hard-to-predict apnoea (not related to seizures);
or
severe, life-threatening breathing difficulties, which require essential oral pharyngeal and/or nasopharyngeal suction, day or night;
or
a tracheostomy tube that requires frequent essential interventions (additional to routine care) by a fully trained carer, to maintain an airway;
or
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. / Severe
Unable to breath independently and requires permanent mechanical ventilation;
or
has no respiratory drive when asleep or unconscious and requires ventilation, disconnection of which could be fatal;
or
a highly unstable tracheostomy, frequent occlusions and difficult to change tubes. / Priority

2. Eating and drinking

Describe the child or young person’s specific needs relevant to this domain
Detail whether needs are unmet or met

2. Eating and drinking – assessors should indicate the level of need

Description / Level
of need
Able to take adequate food and drink by mouth, to meet all nutritional requirements, typical of age. / No additional needs
Some assistance required about what is typical for their age;
or
needs supervision, prompting and encouragement with food and drinks above the typical requirement for their age;
or
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 time consuming or not 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, with most nutritional requirements taken by artificial means, for example, via a non-problematic tube feeding device, including nasogastric tubes. / Moderate
Faltering growth, despite following specialised feeding plan by a speech and language therapist and/or dietician to manage nutritional status;
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 through suction);
or
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;
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

3. Mobility

Describe the child or young person’s specific needs relevant to this domain
Detail whether needs are unmet or met

3. Mobility – assessors should indicate the level of need

Description / Level of need
Mobility typical for age and development. / No additional needs
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
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
positioning is critical to physiological functioning or life. / Severe

4. Continence or elimination