Children with Complex Needs

AuthorityManx Care
Date received2025-02-20
OutcomeSome information sent but part exempt
Outcome date2025-04-07
Case ID4463093

Summary

The request sought business cases for children with complex needs and the number of paediatric learning disability nurses; the authority disclosed a revised business case document detailing cost reductions and strategic changes but did not explicitly confirm the nurse count in the provided text.

Key Facts

  • The Children and Young People with Complex Healthcare Needs (CYPCHN) Business Case was presented to Manx Care BCRG on 14 November 2024.
  • Due to financial challenges, the BCRG advised focusing on 'invest to save' opportunities to strengthen the case.
  • The Respite Business Case is independent of the CYPCHN Business Case but complementary in delivering improvements.
  • Revised costs for the CYPCHN initiative were reduced from £272,476 to £153,515 total.
  • The proposal to recruit a Band 5 nurse for an Assistant Care Coordinator role was eliminated in favor of using an existing secondment.

Data Disclosed

  • 14th November 2024
  • 2025-04-07
  • 2025-02-20
  • £272,476
  • £153,515
  • £250,487
  • £132,707
  • £10,000
  • £59,958
  • £120,661
  • £71,417
  • £48,553
  • £11,315
  • £2,737
  • Band 5
  • Band 6
  • Band 4
  • Band 8a
  • FY 26-27

Original Request

Please provide copies of business cases (whether approved or not). For the following: - Children with complex needs - reasonable adjustments for children's with complex needs. Please confirm how many paediatric learning disability nurses are employed by the department.

Data Tables (58)

Original Costs – Nov Revised Costs - Jan
24 25
Initiative One off total cost Annual One off total cost Annual costs (FY 26-27) What's changed?
costs (FY
26-27
onwards
)
1.Develop a standardised, multidisciplinary Complex Healthcare Needs Pathway £0 £10,000 £0 £10,000 There is no change to this costing. £10,000 is for the use of an Independent Review Professional who will play a vital role in assessing the needs of the CYP. This is in line with the National Framework for Children’s Continuing Care where it states “The panel should be independent from those involved in assessment.1”
2. Establish an Assistant Care Coordinator role £590 £59,958 £0 £0 Initially, the proposal was to recruit a
Band 5 nurse for the assistant care
coordinator role. The Service Team
believe that the secondment that is
currently in place could meet this
requirement, subject to confirmation
from . This approach
would eliminate the projected costs
entirely.
3. Supporting the health needs of the child when receiving care in a non- healthcare environment £14,181 £120,661 £13,590 £71,417 Costs for supporting the child's health
needs in non-healthcare environments
have been reduced. It has been agreed
to employ one Band 6 Nurse instead of
both a Band 6 and Band 4 Nurse.
Although not the preferred choice, this
role will still provide essential clinical
oversight, training, and guidance to
prevent unnecessary admissions.
4. Develop a psychological support offering for families £7,218 £48,553 £7,218 £48,553 There is no change to costings as the Band 8a psychological support role will provide essential support to families, enhancing their capacity to care for their children and preventing crises.
6. Implement a standard approach to transition of children and young people with continuing care needs to adult services N/A £11,315 N/A £2,737 The costs are for time spent by the
named GP who will ensure a consistent
contact for CYP transitioning into adult
services.
This has reduced based on a reduction
in the service team’s estimate of the
number of children who will be
transitioning.
The Annual health Review is not
currently part of the GMS contract and
the recommendation is that this is
added as business as usual to the
One off
total
cost
One off
total
cost
Annual
costs (FY
26-27)
2. Establish an
Assistant Care
Coordinator role
3. Supporting
the health needs
of the child
when receiving
care in a non-
healthcare
environment
6. Implement a
standard
approach to
transition of
children and
young people
with continuing
care needs to
adult services
contract. This will need time to make
this change so will be treated as
aspirational and not costed.
CYPCHN BC Original Costs (Nov 24) Revised Costs (Jan 25)
One off £21,989 £20,808
Annual £250,487 £132,707
Total £272,476 £153,515
# Initiative One off total cost Annual costs (FY 26-27)
1. Develop a standardised, multidisciplinary Complex Healthcare Needs Pathway No change £0k No change £10k
Non- Commentary
cashable
benefit
£1.1k to 4.4k • A standardised pathway could reduce the number of assessments and referrals that are undertaken because engaged agencies are coordinated in the child’s care so do not need to make referrals or repeat assessments. • For example, in one case a child’s care included 11 referrals and 5 assessments over 6 years. This equates to 1.83 referrals and 0.83 assessments a year. • The service team suggests that this initiative could reduce referrals by 1 and assessments by 0.4 per year for each affected child. They advise that this could impact up to 22 CYP. • On average, costs for an assessment are £144 and a referral £133. • If £144 referral costs (1 referral) and £53.2 assessment costs (0.4 assessments) are avoided for between 5 and 22 children, the potential benefit is between £1.4k and £4.4k.
# Initiative Revised One off total cost Revised Annual costs (FY 26- 27)
3. Supporting the health needs of the child when receiving care in a non-healthcare environment (respite and non-respite environments) £13,590 £71,417
Revised One off
total cost
Revised Annual costs (FY 26-
27)
Non- Commentary
cashable
benefit
£15.2k to £30.5k • The nursing role will provide clinical oversight, training, and guidance to prevent unnecessary hospital admissions. Introducing a nursing role at the respite centre has already reduced admissions, e.g., one child went from being admitted 16 times in 3 years to just once in 2 years. • The Service Team suggest that the nursing role could result in 4 fewer admissions per year. A hospital admission on average costs £1,140 (bed days plus additional nursing time). If there are 4 fewer admissions for 3 children each year, this results in potential benefits between £15.2k to £30.5k 5k (different assumption for no. of admissions - max being 4 in a year per child).
# Initiative One off total cost Annual costs (FY 26-27)
4. Develop a psychological support offering for families No change £7,218 No change £48,553
Non- Commentary
cashable
benefit
£8.4k to £16.9k • This initiative will provide psychological support to CYP and families, which should reduce the requirement for emergency respite care. • In one example, due to poor mental health, a child required emergency respite care 5 times in3 years, totally 25 days. • The service team advise that by introducing additional support the requirement for respite days could reduce by 50% (e.g. 8.33 less 4.2 days per annum per child or less 2.1 with a reduction of 25%) and reduce Social Worker time by same %. The service team advise this may apply to on average 3 children and young people each year. • If fewer emergency respite days are required each year (and associated reduced social worker time), there could be potential benefits of £8.4k (if days reduce by 50%), up to £16.9k.
CYPCHN BC Minimum Maximum
Initiative 1 1.1k 4.4k
Initiative 3 15.2k 30.5k
Initiative 4 8.4k 16.9k
Monies Requested One-Off Costs Transformation Costs Ongoing Revenue Costs (per annum) Potential non-cashable savings (per annum) £20,808 To be discussed and agreed at Transformation Committee £132,707 Estimated to be in the range of £24,900 to £52,000 (dependent on assumptions used)
Source of Funding One-Off Costs Transitional Costs Ongoing Revenue Costs (per annum) Transformation Fund Transformation Fund Manx Care OR next Mandate inclusion
Service Area Children and Young Persons with Complex Healthcare Needs (CYPCHN)
Date 23rd January 2025
Author:
Owner: Health and Care Transformation (HCT) Programme
Pathway Children and Young Persons with Complex Healthcare Needs
Problem Statements A: There is no defined pathway for CYPCHN B: Whilst there is a set pathway for assessing Social Care needs, there is no framework or standardised approach to assessing combined health, education and social care needs to provide a holistic care package on the island. C: Although complex health and care needs can have a life changing impact on families, very little emotional or psychological support is available. D: There are currently delays and challenges around training care staff with responsibility for CYPCHN at respite centres and in non-respite facilities in the community. There is no designated nurse to oversee the care of this cohort of children and young people (C/YP) in non-hospital settings. E: There is no urgent and emergency care pathway. F: There is no pathway or coordinated approach to transition to adult services, with no agreed age for this process to start. There is no named GP or appointed adult physician to support with transition which can result in a disjointed provision of services whilst transitioning from child to adult services. G: There is no formal process in place to opt for care at home. H: There are challenges around Tertiary Care handover and return, relating to lack of support for travelling and limited communication between the on-island services and tertiary centres.
Vision To create an efficient, evidence based, sustainable and Island specific pathway for CYPCHN and their families that incorporates a standardised assessment process, a suitable urgent and emergency care pathway, adequate support for the children and their families and a standardised transition to adult services, with the aim of creating the optimal quality of life for these C/YP.
Proposed Change 1. Develop a standardised, multidisciplinary complex healthcare needs pathway 2. Establish a new Assistant Care Coordinator role
Initiatives (pathway
transformation)
3. Support the health needs of the C/YP when receiving care in a non-healthcare environment (both respite and non- respite environments) 4. Develop a new psychological support offering for families 5. Create and implement an urgent and emergency care pathway 6. Implement a standard approach to transition to adult services 7. Co-location of staff administration and service delivery (aspirational)
Quality Standards The future pathway has been developed using national best
practice, including UK National Institute for Health and Care
Excellence (NICE) guidelines1 for children with severe complex
needs, The National Framework for Children and Young
People’s Continuing Care (CYPCC)2 and Children with
Exceptional Healthcare Needs3.
Mobilisation and Implementation Plan high level milestones (post approval date) • Month 0 – Treasury Approval of Business Case • Month 4 – Adult physician for transition to adult services appointed • Month 4 – Sessions with Named GP Commence • Month 5 – Contract and procurement process finalised for independent review professional (including DPIA) with independent review professional (assessment process) assigned and in post • Mid-month 9 – Band 6 Nurse, Band 4 Nurse, Assistant Care Coordinator and Psychologist in post • Mid-month 9 – End of mobilisation (implementation commences) • Mid-month 10 – End of implementation (service live date)
Mobilisation and
Implementation Plan
high level milestones
(post approval date)
• In-line with best practice (see Appendix G), a new Assistant Care Co-ordinator role will be introduced to support the existing Care Coordinator. • The Assistant Care Co-ordinator will act as a named point of contact for families to support their health needs. This will involve responsibility for C/YPs with lower acuity needs, which currently cannot always be met. • Introducing this role for lower acuity needs will allow the Care Coordinator, who would oversee
this work, to focus on coordination of services and supporting more complex issues. How?
• A job description would be developed in consultation with the existing Care Coordinator. • The intention is to formalise the current secondment role who will work with the Care Coordinator across the case load, advocating for and supporting the children and young people with complex Healthcare needs. • The role will report into the Care Coordinator, whilst working closely with the wider multidisciplinary team (including health, social care and education). • The role will help avoid a single point of failure; once the Assistant Care Co-ordinator is embedded in the role, they will provide some level of cover when the Care Co-ordinator is unavailable. • The responsibilities and expectations of the role would be clearly defined and agreed during implementation. Their responsibilities will include: • A focus on lower acuity C/YP and families • Being the named key point of contact for families, ensuring clear support pathways • Liaison with all health providers and services, both on and off island • Co-ordination with other agencies (social care, education, third sector, etc.) with regards to health needs • Care Planning • Supporting hospital admissions • Coordinating and supporting tertiary handover and return, including communication • Following recruitment, training would need to be provided, which will include a period of shadowing the existing Care Coordinator.
Rationale and best practice
• Feedback from the service user survey highlighted that additional support with Care Coordination is required as this is a very valuable area of support, with the Care Coordinator acting as a conduit between the families and the multiple services they access and taking strain off the daily lives of the families. • The CYPCC UK National Framework recommends a co-ordinator or administrator to act as a single point of contact with whom professionals can liaise. • The UK is piloting a Key Worker model developed through extensive consultation with young people, parent carers and other stakeholders (see appendix G). The NHS Long Term Plan includes a commitment that ‘by 2023/24 children and young people with a learning disability with the most complex needs will have a designated keyworker’. From 2023/24, it is expected that all ICSs will offer their key working services to young people up to the age of 25. (Here, the term ke y worker reflects the roles and responsibilities that the Assistant Care Coordinator will be taking on). • A case study in South Yorkshire highlighted the positive effect a designated keyworker has had in ensuring children, young people and their families get the right support at the right time.
Name Role within Manx Care
Head of the Ambulance Service
Hear & Treat Team Leader
Associate Director of Nursing, Medicine, Urgent and Emergency Care
Project Manager for Urgent and Emergency Integrated Care
Lead Business Manager
General Manager for Women’s and Children’s services
General Manager for Mental Health Services
Hospital Youth Coordinator
Proposed Initiative
For every CYPCHN who is transitioning to adult services: a) A timed CYPCHN Transition Pathway will be in place; this will commence at age 14. b) A multi-agency Transition Plan will be in place, ensuring an active, timely & co-ordinated transition to adult services. c) There will be an appointed Adult Physician; this will be an overarching role which coordinates the transition process and ensures that the right people are involved at the right time. d) There will be a named GP who will participate in the transition process ensuring GP engagement and involvement. e) After transition the Adult Long Term Condition Coordinator will take over the Care Coordinator role for the CYPCHN. f) Best practice guidelines highlight that an annual health review is carried out. This can take place using the Learning Disability Annual Health check Template (NICE) and/or condition specific guidelines. As this is not currently part of the GMS contract the recommendation is that this is added as business as usual to the contract. This will need time to make this change so will be treated as aspirational and not costed.
How? a1) The transition to adult services will start at the age of 14 for each CYPCHN, via an agreed and implemented CYPCHN Transition Pathway. a2) The Care Coordinators will lead the transition process for the C/YP on their caseload. They will act as a single point of contact for a child (and family) approaching transition, as well as briefing key professionals and coordinating transition. b1) The Transition Plan will be developed (and implemented) to include a plan for unplanned and planned hospital admissions and ongoing community care across all specialist areas. It should be agreed by all services involved. An alert should be placed on the most relevant patient record systems (there may be more than 1). b2) The Transition Plan should describe how the C/YP’s health and care needs will be supported within adult services taking into account: maintaining good health, independent living, and participating in society. It will form part of the C/YP’s Complex Needs Care Plan and be agreed with the Multidisciplinary Team. c1) An Adult Physician will be identified to lead on transition for C/YP with complex needs: • Participation in transition planning including attending joint clinics • Helping to co-ordinate planned hospital admissions after their 16th birthday • Providing continuity for C/YP during unplanned hospital admissions • Being the named adult physician for families or professionals to contact for concerns around hospital care (on island) for CYP with complex needs d1) A GP (at the practice the C/YP is registered with) will be identified as the named Transition GP: • Participation in transition planning (via email, Teams and attending meetings) • Undertaking an earlier health review as required (where clinically appropriate). This is undertaken following clinical guidelines for the health condition / professional judgement. d2) The delivery mechanism for the named Transition GP (i.e. whether it must be 1 identified GP for each child transitioning, or a cohort of GP’s) is to be identified during implementation. d3) The named Transition GP could be commissioned by Manx Care from the PCN. Business Case costings are based on a pan island annual time commitment of circa 30 hours per annum (7.5 GP sessions). Manx Care have indicated that if the Business Case is approved, this role can be added to the PCN DES for direct enhanced service contract in year and added to the Locality Hub service list for the salaried model and the contract.
Rationale and best practice
• The key components described above are in line with NICE guidelines ‘1.8 - Transition from children's to adult’s services. • The service user questionnaire highlighted that: o Only 7% of 40 users stated they were satisfied with their transition to adult services, with 37% responding that they were not happy. o 31% of 40 users stated they had not discussed transitioning to adult services with a Key Worker/relevant professional.
Proposed Initiative
• Co-location of staff into one office, to increase multidisciplinary team (MDT) effectiveness. • Co-location of service delivery, to increase efficiency of access to services for the CYPCHN cohort and improve the patient and family experience, potentially delivering care closer to home if geographically delivered.
# Initiative
1 Develop a standardised, multidisciplinary complex healthcare needs pathway
2 Establish a new Assistant Care Coordinator role (secondment role)
3 Support the health needs of the C/YP when receiving care in a non-healthcare environment (both respite and non-respite environments)
4 Develop a new psychological support offering for families
5 Create and implement an urgent and emergency care pathway for CYPCHN
6 Implement a standard approach to transition of CYPCHN to adult services
7 Co-location of staff administration and service delivery (aspirational)
CHALLENGING
High impact Low ease 7 1 4 3
IMPLEMENT
High impact High ease 6 2 5
Low impact Low ease
RECONSIDER
Low impact High ease
POSSIBLE
Finance Case Summary Option 1 (Do Option 2 (adopt changes)
nothing)
One-off costs (2024-2025) £0 £20,808
Ongoing revenue costs (2025/26 onwards) £0 £132,707
Non-Cash Releasing Benefits (2024/25) £0 £0
Non-Cash Releasing Benefits (2025/26 onwards) £0 Estimated to be in the range of £24,762 to £51,707 (dependent on assumptions used)
Pathway stage Option and associated initiatives One-off Total Cost (£)17 Ongoing costs (£) 18 Non- cashable benefit
Assessment of needs and outcome 1. Develop a standardised, multidisciplinary Complex Healthcare Needs Pathway £0 £10,000 £1.1k to 4.4k
2. Establish Assistant Care Co-ordinator Role £0 £0 n/a
Support provided 3. Support the health needs of the C/YP when receiving care in a non-healthcare environment £13,590 £71,417 £15.2k to £30.5k
4. Develop a new psychological support offering for families £7,218 £48,553 £8.6k to £17.2k
5. Create and implement an urgent and emergency care pathway for CYPCHN No additional cost No additional cost n/a
Transition 6. Implement a standard approach to transition of CYPCHN to adult services n/a £2,737 n/a
Aspirational 7. Improve effectiveness of multidisciplinary team (MDT) and access to services for CYPCHN cohort by co-locating services Not costed Not costed Not costed
PMO support (0.2 WTE HEO Band 19 Project Manager for 9 months) No cost associated No cost associated No cost associated
Total for Option 2 £20,808 £132,707 £25k to £52k
Pathway
stage
One-off Total
Cost (£)17
Ongoing costs
(£) 18
Non-
cashable
benefit
# Cost Elements & Measures Source & Benchmarks Cost (FY 24/25 for one-time costs and FY 26/27 for ongoing)
Annual costs (2026-2027)
A Independent Review Professional Quote from NHS Midlands and Lancashire Commissioning Support Unit (ML) Children and Young People’s Service (CYP). £10,000
Summary
Annual cost Potential non-cash releasing financial benefit £10,000 £1.1k to 4.4k
Assumptions for benefit figure
• A standardised pathway could reduce the number of assessments and referrals that
are undertaken because engaged agencies are coordinated in the child’s care so do
not need to make referrals or repeat assessments.
• For example, in one case a child’s care included 11 referrals and 5 assessments
over 6 years. This equates to 1.83 referrals and 0.83 assessments a year.
• The service team suggests that this initiative could reduce referrals by 1 and
assessments by 0.4 per year for each affected child. They advise that this could
impact up to 22 CYP.
• On average, costs for an assessment are £144 and a referral £133.
• If £144 referral costs (1 referral) and £53.2 assessment costs (0.4 assessments) are
avoided for between 5 and 22 children, the potential benefit is between £1.4k and
£4.4k.
Cost (FY 24/25 for
one-time costs and
FY 26/27 for
ongoing)
Source &
Benchmarks
Summary
Annual cost £0
# Cost Elements & Measures Source & Benchmarks Cost (FY 24/25 for
one-time costs and
FY 26/27 for
ongoing)
One-time costs (2024-2025)
A1 Recruitment costs (Band 6 Nurse) Advert - £295.23, Interview expenses - £295.23, Relocation - £7000, Housing Allowance - £6,00020 £13,590.47
Annual costs (2026-2027)
B1 Band 6 Nurse Band 6 on MPTC pay scale (Apr 23 onwards + inflation) (highest scale point) £56,680.33
B2 Band 6 Nurse On costs 26% of employee costs to cover ER NI and ER Pensions £14,736.88
Summary
One-time costs £13,590
Annual cost £71,417
Potential non-cash releasing financial benefit £15.2k to £30.5k
Assumptions for benefit figure
The nursing role will provide clinical oversight, training, and guidance to prevent
unnecessary hospital admissions. Introducing a nursing role at the respite centre has
already reduced admissions, e.g., one child went from being admitted 16 times in 3 years
to just once in 2 years.
The Service Team suggest that the nursing role could result in up to 4 fewer admissions
per year for children who require respite care, which they estimate to be 3 children. A
hospital admission on average costs £1,140 (bed days plus additional nursing time). If
there are 4 fewer admissions for 3 children each year, this results in potential benefits up
to £30.5k, with a lower estimate of £15.2k if just 2 admissions were avoided per year per
child.
Cost Elements &
Measures
Source &
Benchmarks
# Cost Elements & Measures Source & Benchmarks Cost (FY 24/25 for
one-time costs and
FY 26/27 for
ongoing)
One-time costs (2024-2025)
A Recruitment costs (50% of these costs will be paid by the MH team) Advert - £1,140, Interview expenses - £295.23, Relocation - £7000, Housing Allowance - £6,00021 £7,217.62
Annual costs (2026-2027)
C Additional Band 8a Psychologist - 0.5 WTE Band 8a on MPTC pay scale (Apr 23 onwards + inflation) (highest scale point) £38,230.33
D On costs 27% of employee costs to cover ER NI and ER Pensions £10,322.19
Summary
One-time costs £7,217.62
Annual cost £48,552.52
Potential non-cashable financial benefit £8.4k to £16.9k
Assumptions for benefit figure
This initiative will provide psychological support to C/YP and families, which should
reduce the requirement for emergency respite care.
In one example, due to poor mental health, a child required emergency respite care 5
times in 3 years, totalling 25 days (8.33 days per year).
The service team advise that by introducing additional support, the requirement for
respite days could reduce to between 4 and 6 days per year (reduction of between 25
and 50%), with Social Worker time reducing in line. The service team advise this may
apply to on average 3 children and young people each year.
If fewer emergency respite days are required each year (and associated reduced social
worker time), there could be potential benefits in the range of £8.4k to £16.9k.
Cost Elements &
Measures
Source &
Benchmarks
# Cost Elements & Measures Source & Benchmarks Cost
Annual costs
C C/YP Named GP for Transition Process 7.5 GP Sessions x £365 (*75%) £2,737.50
Summary
Annual cost £2,737.50
Cost Elements &
Measures
Source &
Benchmarks
Theme/issue identified in patient/family How initiatives respond to theme/issue
feedback
During the initial diagnosis, 62% of service users were not satisfied with the level of care, information and support that they received. Improved communication about the process and next steps was the leading element that service users felt were missing. The introduction of a defined assessment process, with transparent and standardised decision-making on access to services will respond to this feedback.
71% of service users were not satisfied with the level of care, information and support that they receive now. A lack of general support, care not being tailored to their needs and unclear direction of care were stated as the leading components missing. The introduction of an Assistant Care Coordinator as a single point of contact and a Complex Needs Plan should ensure that C/YP and families receive a more coherent, coordinated service and feel more fully involved and informed.
Service users noted a lack of specialist staff at respite centres and in other care environments, impacting on the ability of the service to operate at full capacity. Interventions to improve access to and consistency of training for care providers will respond to these challenges.
Mental health/ psychological support to families was identified as missing and needed. Psychological support initiatives including the recruitment of a psychologist and the introduction of a new Assistant Care Coordinator will respond to this issue.
Service users were not satisfied with their experiences in ED and with the facilities available for this cohort (such as changing facilities). The introduction of defined urgent and emergency care pathways, including clear signposting, should encourage a smoother and clearer pathway through urgent and emergency care for this cohort. Aspirational initiatives to implement more appropriate facilities and equipment (through future ED design plans and paediatric ward design plans) should respond to issues around the provision of appropriate facilities.
Poor transition to adult services was identified as a key theme with only seven percent of service users being satisfied with their transition to adult services. A set process for transition to adult services and the implementation of the named GP for transitioning C/YP will respond to this issue.
Appraisal criteria Option 1 (Do nothing) Option 2 (Pathway
transformation)
Case for Change Low – does not resolve the clinical case for change High – designed to tackle the clinical case for change
Financial case Low – offers no benefit, at no additional cost Low - investment anticipated to achieve improved experience, but not savings
Strategic alignment Low – does not align with key strategies High – aligns with key strategies
Patient feedback Low – has no impact on patient experience High – is anticipated to improve patient experience
Travel and environmental impact Low – has no travel or environmental impact Low – has no travel or environmental impact
Data Protection (details in appendix L) Low – has no impact on data protection Medium – The need for a DPIA should be considered if patient information is captured
Equality Act (details in appendix L) Low – has limited impact on groups with protected characteristics Medium – benefits some people with disabilities
Risk Likelihood Impact Mitigation
Not the resource in place to deliver the changes within implementation Medium • This may impact on the speed of implementation and effectiveness of the future pathway • Ensure appropriate PMO resource in place to deliver the change initiatives and ensure engagement with relevant stakeholders
Some of the practicalities of the design and benefits are not sufficiently understood High • May impact on ability to implement the change within appropriate cost/benefit parameters • Steering Group have developed the change initiatives together and have the insight and knowledge required; they need to be engaged fully in the implementation process • Implementation PM to work with the Steering Group to resolve any emerging design questions
Challenging to recruit the new staff members (specifically the Psychologist and Nurse roles) High • This may impact on the speed of implementation, ability to implement these initiatives, and effectiveness of the future pathway • For the psychologist role to engage with Mental Health SMEs to support with the correct strategy to recruit • Consider international channels (if needed) to recruit nurses.
Difficult to get involvement of all panel members within the Assessment process Medium • Could result in unsuitable decisions being made at assessment • Use of a validated decision-making tool (Decision Support Tool) • Potential to engage an expert that sits outside the panel for advice via email
CEN • Children with Exceptional Healthcare Needs
CYP • Child/young person • Children/young people
CYPCHN • Children and Young People with Complex Healthcare Needs
DHSC • Department for Health and Social Care
ED • Emergency Department
MDT • Multidisciplinary Team
MIU • Minor Injuries Unit
PCN • Primary Care Network
SPC • Specialist Provision Centres
WTE • Whole time equivalent
Name Role Organisation
Care Coordinator for Children and Young Persons with Complex Care Needs Manx Care
Business support for Women, Children and Families Manx Care
Care Group Manager Manx Care
Children’s Occupational Therapist / Interim Children’s Therapy Team Lead Manx Care
Children’s Specialty Doctor Manx Care
Community Paediatrician / Designated Doctor for Child Protection/LAC Manx Care
Public Health Lead, Project Lead for the Women’s Health Strategy and CONI Coordinator Manx Care
Service Lead Children’s Community Nursing Manx Care
Team Manager for Children with Disabilities and oversight over Social Care Respite Centres Manx Care
Adult Social Care (Assistant Director/Children and Families) Manx Care
Clinical director for medicine Manx Care
Consultant Paediatrician Manx Care
Senior Nurse for Women’s and Children’s Manx Care
Name Role Organisation
Care Coordinator for Children and Young Persons with Complex Care Needs Manx Care
Business support for Women, Children and Families Manx Care
Community Paediatrician Manx Care
Children’s Physiotherapy Manx Care
Lead Social Care Manager and Social Worker for Children and Young Persons with Complex Care Needs Manx Care
Senior Special Educational Needs Advisor Department for Education, Sport and Culture
Senior Nurse for Women’s and Children’s Manx Care
Rebecca House Hospice Manager Rebecca House Hospice (3rd sector)
Service Lead Children’s Community Nursing Manx Care
Team Manager for Children with Disabilities and oversight over Social Care Respite Centres Manx Care
Representative for Adult Social Care leadership (Assistant Director of Children and Families) Manx Care
Clinical director for medicine Manx Care

Full Response Text

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Health and Care Transformation Programme Care Pathway Addendum Paper Children and Young People with Complex Care Needs

On 14th November 2024, the Children and Young People with Complex Healthcare Needs (CYPCHN) Business Case was presented to Manx Care BCRG. Due to the current financial challenges across the health and care system, BCRG advised a focus on "invest to save" opportunities for those change initiatives with a recurrent cost, to strengthen the case. The BCRG also asked for confirmation whether the Respite Business Case submitted by Social Care was linked to the CYPCHN Business Case. Respite Business Case We have been advised that the Respite Business Case relates to residential provision rather than this business case, which has a series of interventions that ensures there is a standardised assessment process, a suitable urgent and emergency care pathway, adequate support for the C/YP and their families with a standardised transition to adult services and initiatives that address inappropriate hospital admission. The two business cases are independent of each other (so could be implemented separately) but are complementary, as both deliver improvements to this cohort of patients and their families.
Invest to save The project team completed this work with the service leads and in addition added information around safety and compliance benefits. In terms of compliance and safety, all initiatives will support a higher quality and safer service for children and young people, more closely aligned to NICE guidance.
Whilst undertaking this exercise, the service team were able to identify cost reductions for certain initiatives.
This addendum paper provides an overview of the original costings, the reduction in the funding request (Table 1) and specific non-cash releasing benefits (Table 2).

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Table 1- Original versus revised costs ; Original Costs – Nov 24
Revised Costs - Jan 25

Initiative One off total cost Annual costs (FY 26-27 onwards ) One off total cost Annual costs (FY 26-27) What's changed?
1.Develop a standardised, multidisciplinary Complex Healthcare Needs Pathway £0 £10,000 £0 £10,000 There is no change to this costing. £10,000 is for the use of an Independent Review Professional who will play a vital role in assessing the needs of the CYP. This is in line with the National Framework for Children’s Continuing Care where it states “The panel should be independent from those involved in assessment.1” 2. Establish an Assistant Care Coordinator role
£590 £59,958 £0 £0 Initially, the proposal was to recruit a Band 5 nurse for the assistant care coordinator role. The Service Team believe that the secondment that is currently in place could meet this requirement, subject to confirmation from . This approach would eliminate the projected costs entirely. 3. Supporting the health needs of the child when receiving care in a non- healthcare environment
£14,181 £120,661 £13,590 £71,417 Costs for supporting the child's health needs in non-healthcare environments have been reduced. It has been agreed to employ one Band 6 Nurse instead of both a Band 6 and Band 4 Nurse. Although not the preferred choice, this role will still provide essential clinical oversight, training, and guidance to prevent unnecessary admissions. 4. Develop a psychological support offering for families £7,218 £48,553 £7,218 £48,553 There is no change to costings as the Band 8a psychological support role will provide essential support to families, enhancing their capacity to care for their children and preventing crises.
6. Implement a standard approach to transition of children and young people with continuing care needs to adult services N/A £11,315 N/A £2,737 The costs are for time spent by the named GP who will ensure a consistent contact for CYP transitioning into adult services. This has reduced based on a reduction in the service team’s estimate of the number of children who will be transitioning. The Annual health Review is not currently part of the GMS contract and the recommendation is that this is added as business as usual to the

11 National Framework for Children and Young People's Continuing Care (publishing.service.gov.uk)

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contract. This will need time to make this change so will be treated as aspirational and not costed.

Summary of business case cost changes
CYPCHN BC Original Costs (Nov 24) Revised Costs (Jan 25) One off £21,989 £20,808 Annual
£250,487 £132,707 Total
£272,476 £153,515

Non-Cash Releasing Benefits The Service Team have shared details about specific case studies and this information has been used to calculate the potential benefits if the initiative is implemented. The potential benefits are driven by the assumptions detailed, and any change to these assumptions will affect the potential benefits. A range has been provided to reflect the variability of benefit realisation that is anticipated.

Initiative One off total cost Annual costs (FY 26-27) 1. Develop a standardised, multidisciplinary Complex Healthcare Needs Pathway No change £0k No change £10k Non- cashable benefit
Commentary

£1.1k to 4.4k

• A standardised pathway could reduce the number of assessments and referrals that are undertaken because engaged agencies are coordinated in the child’s care so do not need to make referrals or repeat assessments.
• For example, in one case a child’s care included 11 referrals and 5 assessments over 6 years. This equates to 1.83 referrals and 0.83 assessments a year. • The service team suggests that this initiative could reduce referrals by 1 and assessments by 0.4 per year for each affected child. They advise that this could impact up to 22 CYP. • On average, costs for an assessment are £144 and a referral £133.
• If £144 referral costs (1 referral) and £53.2 assessment costs (0.4 assessments) are avoided for between 5 and 22 children, the potential benefit is between £1.4k and £4.4k.

Initiative Revised One off total cost Revised Annual costs (FY 26- 27) 3. Supporting the health needs of the child when receiving care in a non-healthcare environment (respite and non-respite environments)

£13,590 £71,417 Page | 4

Non- cashable benefit
Commentary £15.2k to
£30.5k • The nursing role will provide clinical oversight, training, and guidance to prevent unnecessary hospital admissions. Introducing a nursing role at the respite centre has already reduced admissions, e.g., one child went from being admitted 16 times in 3 years to just once in 2 years.
• The Service Team suggest that the nursing role could result in 4 fewer admissions per year. A hospital admission on average costs £1,140 (bed days plus additional nursing time). If there are 4 fewer admissions for 3 children each year, this results in potential benefits between £15.2k to £30.5k 5k (different assumption for no. of admissions - max being 4 in a year per child).

Initiative One off total cost Annual costs (FY 26-27)

Develop a psychological support offering for families No change £7,218 No change £48,553 Non- cashable benefit
Commentary £8.4k to £16.9k • This initiative will provide psychological support to CYP and families, which should reduce the requirement for emergency respite care.
• In one example, due to poor mental health, a child required emergency respite care 5 times in3 years, totally 25 days.
• The service team advise that by introducing additional support the requirement for respite days could reduce by 50% (e.g. 8.33 less 4.2 days per annum per child or less 2.1 with a reduction of 25%) and reduce Social Worker time by same %. The service team advise this may apply to on average 3 children and young people each year.
• If fewer emergency respite days are required each year (and associated reduced social worker time), there could be potential benefits of £8.4k (if days reduce by 50%), up to £16.9k.

Summary of non-cash releasing benefits CYPCHN BC Minimum Maximum Initiative 1 1.1k 4.4k Initiative 3 15.2k 30.5k Initiative 4 8.4k 16.9k

Conclusion In summary, the Service Team has been able to reduce the costs of the business case by 119k and calculate the potential benefits of implementing these initiatives, noting an overall non-cashable benefit of £25k to £52k. These savings are based on specific assumptions as per information we have received and collated from Manx Care.
All initiatives will support a higher quality and safer service for children and young people, more closely aligned to NICE guidance. 22/01/2025 END


Page 1 of 34 BCRG DRAFT VERSION – DECEMBER 2024

Health and Care Transformation Programme Care Pathway Business Case (BC) Children and Young Persons with Complex Healthcare Needs

Monies Requested One-Off Costs

Transformation Costs

Ongoing Revenue Costs (per annum)

Potential non-cashable savings (per annum)

£20,808 To be discussed and agreed at Transformation Committee £132,707

Estimated to be in the range of £24,900 to £52,000 (dependent on assumptions used) Source of Funding

One-Off Costs Transitional Costs
Ongoing Revenue Costs (per annum)

Transformation Fund

Transformation Fund

Manx Care OR next Mandate inclusion

Page 2 of 34 BCRG DRAFT VERSION – DECEMBER 2024

Table of Contents 1 This document ....................................................................................................... 2 2 Introduction ........................................................................................................... 2 3 The Current Situation – how the service is delivered now ........................................... 5 4 The Case for Change – challenges & opportunities .................................................... 7 5 The Vision – how the process could be improved ...................................................... 9 6 Financial Case ....................................................................................................... 21 7 Impact Assessment (& feasibility) ........................................................................... 27 8 Mobilisation and Implementation – plan, metrics, dependencies and risks .................. 29 9 Review process undertaken .................................................................................... 31 10 Recommendations, decision required and next steps ................................................ 32 11 Appendix .............................................................................................................. 32

1 This document

DEPARTMENT: Department of Health and Social Care (DHSC) BUSINESS CASE FOR: The implementation of an integrated pathway for Children and Young Persons with Complex Healthcare Needs Service Area Children and Young Persons with Complex Healthcare Needs (CYPCHN) Date 23rd January 2025 Author:

Owner: Health and Care Transformation (HCT) Programme

This document describes the evidence-based Care Pathway Business Case for the transformation of the Isle of Man Children and Young Persons with Complex Healthcare Needs (CYPCHN) pathway. It describes the current position, the case for change, the future vision for best practice care on the Island, the steps needed to achieve that vision and the associated costs.

2 Introduction

2.1 Strategic context
In May 2019 Sir Jonathan Michael’s “Independent Review of the Isle of Man Health and Social Care System” was unanimously approved by Tynwald. One of the key Page 3 of 34 BCRG DRAFT VERSION – DECEMBER 2024 recommendations (12) was that “service by service integrated care pathways should be designed, agreed, and delivered”. On behalf of the DHSC and working in close partnership with Manx Care and key partners, the Transformation Programme has progressed work to redesign a series of care pathways, including Children and Young People with Complex Healthcare Needs (CYPCHN).
The previous CYPCHN Business Case was completed in April 2022 (but not progressed for approval due to the 12-month project pause) so this current work has been an update or “refresh” of the 2022 business case. The refresh looks at the clinical, operational, activity and financial aspects of the pathway to ensure the business case remains up to date and relevant for the service, service users and their families.

2.2 Executive Summary

Pathway Children and Young Persons with Complex Healthcare Needs Problem Statements A: There is no defined pathway for CYPCHN B: Whilst there is a set pathway for assessing Social Care needs, there is no framework or standardised approach to assessing combined health, education and social care needs to provide a holistic care package on the island. C: Although complex health and care needs can have a life changing impact on families, very little emotional or psychological support is available. D: There are currently delays and challenges around training care staff with responsibility for CYPCHN at respite centres and in non-respite facilities in the community. There is no designated nurse to oversee the care of this cohort of children and young people (C/YP) in non-hospital settings. E: There is no urgent and emergency care pathway. F: There is no pathway or coordinated approach to transition to adult services, with no agreed age for this process to start. There is no named GP or appointed adult physician to support with transition which can result in a disjointed provision of services whilst transitioning from child to adult services. G: There is no formal process in place to opt for care at home. H: There are challenges around Tertiary Care handover and return, relating to lack of support for travelling and limited communication between the on-island services and tertiary centres. Vision To create an efficient, evidence based, sustainable and Island specific pathway for CYPCHN and their families that incorporates a standardised assessment process, a suitable urgent and emergency care pathway, adequate support for the children and their families and a standardised transition to adult services, with the aim of creating the optimal quality of life for these C/YP. Proposed Change Initiatives (pathway transformation) 1. Develop a standardised, multidisciplinary complex healthcare needs pathway 2. Establish a new Assistant Care Coordinator role Page 4 of 34 BCRG DRAFT VERSION – DECEMBER 2024 3. Support the health needs of the C/YP when receiving care in a non-healthcare environment (both respite and non- respite environments) 4. Develop a new psychologic

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