Children & Young People Cancer Network (CYPCN) Children & Young People Network Commissioning Function

Transcription

1 Children & Young People Cancer Network (CYPCN) Children & Young People Network Commissioning Function 2012 Document Information Title: CYP Commissioning Function Author: Mr Mark Adams, Chair CYPCG and Suzanne Thompson Cancer Modernisation Manager Circulation List: Children & Young People Coordinating Group (CYPCG) and Children & Young People Network Site Specific Group (CYP NSSG) Contact Details: Miss S Thompson, Cancer Modernisation Manager Suzanne.thompson@necn.nhs.uk Telephone: Version History: Date: Version: v.07 Review Date: March

2 The Commissioning Arrangements have been agreed by: Position: Chair of the CYPCN and CYPCG Name: Mr Mark Adams Organisation: Chief Officer for Newcastle/Gateshead Clinical Commissioning Group Date Agreed: Position: Chair of the Specialised Commissioning Group Board Name: Mr C Reed Organisation: Chief Executive, NHS North of Tyne Date Agreed: Review Date: March 2013 Position: Named Lead for commissioning of Children s cancer services Name: Mr R McLachlan Organisation: Director, North of England Cancer Network Date Agreed: Position: Delegated Representatives from each Organisations Responsible for Commissioning Aspects of the Pathway Name Organisation Ms A Hume NHS Co Durham Ms R Berry NHS Cumbria Mr M Adams NHS North of Tyne Mr D Hambleton NHS South of Tyne and Wear Mrs L Robson NHS South of Tyne and Wear Mr M Phillips NHS Tees Ms A Wilson NHS Tees Date Agreed: Position: Director of Children Services & Director of Public Health Local Authorities: Cumbria Durham Northumberland Tees Tyne & Wear Date Circulated:

3 CONTENTS PAGE NO 11-8A The Establishment of the CYPCG and Leadership of the CYPCN A The Delegation Agreement A Health Needs Assessment A The Children s Cancer Commissioning Strategy A The Service Specification A The Contracts and SLAs A Service Monitoring...7 Appendix 1 List of Responsibilities for Commissioning Lead...8 Appendix 2 - The Delegation Agreement...9 Appendix 3 Children s Commissioning Strategy...10 Appendix 4 Service Specification

4 ESTABLISHMENT OF THE CHILDREN AND YOUNG PEOPLE CANCER NETWORK COMMISSIONING FUNCTION The Manual for Cancer Services for Children s Cancer Measures refers to the Children s Cancer Network (CCN) and the Children s Cancer Network Co-ordinating Group (CCNCG) throughout. For the purpose of this document, the CCN will be replaced with the North of England Cancer Network (NECN) and CCNCG with the Children & Young People Coordinating Group (CYPCG). 4

5 11-8A-101 The Establishment of the CYPCG and Leadership of the CYPCN The named lead from the Specialised Commissioning Group (SCG) is Roy McLachlan NECN Network Director. The responsibilities of the NECN Network Director s role as SCG Lead for CYPCN were agreed by the Specialised Commissioning Group on 15 September 2011 and again 22 August See Appendix 1 for list of responsibilities of the commissioning lead. THE CYACN LEADS 11-8A-102 The Delegation Agreement North East Specialised Commissioning Operating Group (NESCOG) already has a delegation agreement in place for its role when commissioning on behalf of its constituent Primary Care Trusts its Establishment Agreement. It has been agreed that this existing delegation agreement is applied to Children and Young People s Cancer Services across North of England. This was agreed on 15 September 2011 and again 22 August See Appendix A-103 Health Needs Assessment The CYPCG has developed the children s cancer health needs assessment (HNA), as agreed by the SCG lead, in conjunction with the North East Public Health Observatory and Northern & Yorkshire Cancer Registry Information Service. The HNA has been sent to Public Health Leads across the Network for incorporation into their joint service needs assessments for the catchment area of the NECN. Health Needs Assessment is available on the NECN website, link below: o-ordinatinggroup 5

6 11-7A-104 The Children s Cancer Commissioning Strategy The CYPCG has agreed a commissioning strategy which fulfils the following criteria: it encompasses the period of the five years which is in line with the specialised service designation process it specifies priorities for service change and investment to meet the requirements of the health needs assessment it has dated milestones for progressive implementation it specifies the metrics for progress assessment, which should include peer review it has been agreed by stakeholder representatives, including: o clinicians involved in the service at PTC and POSCU level o each individual PCT involved, whether as provider or commissioner (through NESCOG) o network NHS service providers o involved 'adult' cancer networks o involved children's health networks o involved local authorities o involved voluntary and independent sector providers o users and carers. See Appendix 3 for Commissioning Strategy. 11-8A-105 The Service Specification The CYPCG has developed an annual service specification to fulfill the following requirements: it specifies the patient pathways it refers to the milestones for service change required by the commissioning strategy it has components specific to all providers it is integrated across the NECN as evidenced by its agreement by all identified commissioning bodies. See Appendix 4 for Service Specification. 11-8A-106 The Contracts and SLAs The contract for children s cancer between NHS North of Tyne and Newcastle upon Tyne Hospitals NHS Foundation Trust (PTC) makes reference to the relevant parts of the service specification and the relevant children s cancer measures. 6

7 11-8A-107 Service Monitoring The contract for children s cancer state service monitoring criteria which include the following as relevant to the part of the patient pathway and the part of the NECN in question: performance against waiting times cancer registration specified clinical outcome audits clinical trial entry rates patient reported outcome measures providing data required to support designation process. See Appendix 4 for Service Specification. The results of service monitoring will be taken to the CYPCG for discussion every 6 months. Any remedial actions will be agreed. 7

8 Appendix 1 List of Responsibilities for Commissioning Lead Roles & Responsibilities for named SCG lead for children s cancer To be the named lead from North East SCG for commissioning the Children s Cancer Network For overseeing production of the five year commissioning strategy for Children s Cancer Services For overseeing production of the Health Needs Assessment every five years and ensure it s incorporated into the Joint Strategic Needs Assessment. To obtain agreement from all organisations that commission aspects of the children s pathway their responsibilities of the commissioning function To oversee production and obtain agreement for the Service specification for the Children s Cancer Network with commissioning bodies To ensure inclusion in the contracts / Service Level Agreements for children s cancer of the relevant parts of the service specification and measures To ensure service monitoring is brought to the CYPCG every 6 months and remedial action is agreed. 15 September 2011 NESCG agreed that the Director of North of England Cancer Network (NECN) should fulfil the role of the named SCG Lead for Children s Cancer on the Children and Young People Coordinating Group. This was agreed again 22 August 2012 by NESCOG. Minutes available. 8

9 Appendix 2 - The Delegation Agreement The children s cancer peer review measures ask for an agreement for each organisation which specifies: Which organisations are responsible, including cancer networks, individual PCTs, children s cancer networks (i.e. networks dealing with children s services in general), local authorities and practice-based commissioners; What each organisation is responsible for, covering where relevant, which patient pathways or parts of pathways, which geographical parts of the network and which part of the commissioning function; Who is responsible for monitoring the performance and quality and feeding back to the contract lead Last year in order to provide evidence for compliance with the cancer peer review measures associated with this recommendation, NESCG agreed the application of their existing delegation agreement which explains its role when commissioning on behalf of its constituent PCTs. 22 August 2012 given changes to NHS commissioning functions and an updated NESCOG Establishment Agreement NESCOG was requested to agree the application of the new Establishment Agreement to children s cancer services. This was agreed. Establishment Agreement is available as a hard copy. 9

10 Appendix 3 Children s Commissioning Strategy CHILDREN S COMMISSIONING STRATEGY (0-18 years) Why is change needed? Evidence shows earlier identification of cancer would have fastest, most significant impact on life expectancy and quality of life Patients and their families travelling further than they need to for some elements of their care, serious concern from peer review and feedback from families Better quality of life for children and young people who survive cancer Support those who want to die at home to do so The issues have been identified through NECN CYP health needs assessment, Improving Outcomes for Cancer Strategy, and CYP Nice Improving Outcomes Guidance How do we want the future to look and what are the transitional issues? Age-appropriate, safe and effective services as locally as possible Continue to improved survival rates Reduced cancer mortality Improve quality of life for survivors of childhood cancer Maintain the improvements that have resulted from the CYP Improving Outcomes Guidance Objective Coordinate the planning, commissioning and funding for all aspects of care for children and young people with cancer, across the whole healthcare system, to ensure that there is an appropriate balance of service provision and allocation of resources What are we doing about it? Project Gantt Chart Agree the location, component hospitals, services and functioning levels of Paediatric and Oncology Shared Care Units (POSCUs). Principal Treatment Centre and POSCU to develop these services. Support GPs to diagnose cancer earlier assess the impact of direct access to diagnostics for magnetic resonance imaging (MRI) to support diagnosis of brain cancer. Work with partners to support campaign activities Assess commissioning and planning implications of access to proton beam therapy in collaboration with National Specialised Commissioning team proton overseas programme, Intensity modulated radiotherapy (IMRT),and rapid access to any new genetic testing of cancers Link with acute oncology services developed to address the number of patients dying within 30 days of receiving chemotherapy Commission survivorship pathways in line with the National Cancer Survivorship initiative based on one of four tested models of care Ensure that carers are supported at key transition points as identified by National Cancer Survivorship initiative and Macmillan Cancer Support Reduce the percentage of all deaths which take place in hospital and increase the percentage of deaths which take place in the community Take part in any review of the funding mechanisms for palliative care for children and young people and apply the per-patient tariff for palliative care across all sectors as appropriate as outlined in the national palliative care funding review Provide long term follow up support to those living with and beyond cancers. The late effects for survivors of childhood cancer are physical, social and effect educational attainment and employability. Could be in excess of 50 patients per year requiring long term follow up in North of England Ensure Holistic needs assessment is part of the patient pathway and that written information and its delivery to patients and carers follows the principles of the NHS Information Prescriptions Project 2012/ /18 Y1 Y2 Y3 Y4 How much will this cost or save? Identify areas where outcomes could be improved and resources saved in order to release funding for other areas (bed days and emergency admissions, improving the quality of surgery, improving the effectiveness of chemotherapy) Need to find way of releasing resource in some areas to fund new areas of work What Key Performance Indicators will we use to monitor progress? National Measures 20% reduction nationally in inappropriate follow up admissions National indicators for quality of end of life care (not yet released) National metrics both for radical and palliative radiotherapy treatment 1 year and 5 year survival rates Incident rates Mortality rates Cancer Peer Review Local Measures Patient survey 100% of children and young people cancer survivors have a care plan 20% reduction nationally in inappropriate follow up admissions Reduction in unnecessary emergency admissions Reduction in unnecessary in-patient admissions Cancer registration (including staging) Clinical trial entry rates Risks Failure to respond to serious concern over- centralised service will mean an immediate risk at next peer review round. Patients and families lives will continue to be detrimentally affected by unnecessary travel Diagnosing cancer late adversely effects patients survival and quality of life. Fail to plan for cost of new treatments and develop new pathways Fail to link in with improvements in radiotherapy and chemotherapy may adversely affect patient safety Failure to implement survivorship pathways may mean patients in North of England do not benefit from potential improvement to quality of life Failure to assess and implement equitable funding of palliative care may mean lack of equity across the Network for patients Implications, Risks and Mitigating Actions Mitigating Actions Developing a model of shared care and service specification according to plan submitted to peer review Close working with charities campaigning around early awareness and diagnosis. Recruiting GP Cancer Lead to attend CYPCG Link in needs of children and young people to work taking place across NECN or nationally Monitor radiotherapy and chemotherapy outcomes Implement project with other Cancer Networks across the North Review implications of palliative care funding review Estates Implications May require additional capacity to provide children s shared care. Informatics Implications Find a way of collecting national key performance indicators by age. Require a mechanism for collecting local data on regular basis to review at CYPCG Communications Implications Communication of change to follow up and survivorship pathways with patients and clinicians Communication with GPs regarding the development of shared care Workforce Implications Survivorship pathways is likely to require a different way of working Implications for late effects service of meeting needs of years old Implications for development of shared care services Implications at Principal Treatment Centre to support shared care services 10

11 Appendix 4 Service Specification SCHEDULE 2 THE SERVICES Schedule 2 Part 1: Service Specifications Service / Care Pathway Children and Young People with cancer 0-18 years old Commissioner Lead Anya Paradis, Head of Commissioning, NHS North of Tyne Provider Lead Russ Watkins, Senior Contracting Manager, Newcastle upon Hospitals NHS Foundation Trust Period 1 April March 2013 Date of Annual Review Dec Purpose The purpose of this specification is to: outline the nature of specialist children s cancer services in North of England Children s Cancer Network set out the model of care indicate quality standards outline eligibility criteria 1.1 Aims The aims of the service are to: To ensure patients with cancer are treated and supported in line with the North of England Children & Young People Coordinating Group (CYPCG) agreed pathways and policies To ensure patients with cancer are treated in line with the national children s cancer protocols or agreed Children and Young People Coordinating Group treatment protocols or guidelines To ensure that parents and children have co-ordinated care across the whole pathway and feel supported during their cancer journey. To monitor survival outcomes in conjunction with the Children s Cancer Research Group (CCRG) in Oxford using data supplied by them 1.2 Evidence Base The documents which support the services to be provided and this specification include: o NICE National Guidance for Children and Young People with Cancer (2005). o National Cancer Peer Review Programme, Manual for Cancer Services (National Cancer Action Team) o NCRN Children s Cancer and Leukaemia CSG/CCLG guidelines for treating children with cancer o The National Service Framework for children (2004) o Health Services Commission: Improving Services for Children in Hospital (2007). o Specialised Services National Definition Set (2010) The Rarity of Childhood Cancer National guidance recognises cancer in childhood is rare and includes a wide range of cancers with small numbers of patients with each type of cancer (classified as rare cancers). Hence in order to improve cancers the national approach is to commission these services for large populations to maximise the opportunities for standardising care and evaluating outcomes. About one in 600 children develops a cancer by age 15 years. There are approximately 1400 new cases of cancer among children 0-15 years in the UK each year; an annual incidence rate of approximately 1:7700. The incidence of cancer in adolescents is less certain due to data collection problems, but rates calculated by Birch (2003) and endorsed by UKCCSG suggest about 1:7000 per year among adolescents years Most of the cancers affecting children differ from those affecting adults. They occur in different parts of the body, appear different under the microscope and respond differently to treatment. Cure rates among children are much higher than for most adult cancers and overall 70% of children are completely cured, according to CCRG data, although a proportion of these will experience long term side effects from their treatment National and International Trends Increases in childhood cancer incidence since the1960s and 1970s have been reported in Europe and the rest of the world. In Great Britain, the World age-standardised incidence rate has increased by more than two fifths (43%) since the late 1960s, from 107 cases per million children in to 152 cases per million in Between 1966 and 2000 there has been a statistically significant average annual increase of almost 1% per year, though this varies between 0.5% and 2.5% per year by tumour type. Over a twenty year time period, the World age standardised incidence rate for Europe increased significantly by an average of 1.1% per year, from 120 per million children in to 141 per million in This varied across Europe, ranging from an average annual increase of 1.0% per year in Northern Europe to 1.4% per year in Eastern Europe. While some of the worldwide increases are likely to be due to real changes in risk, improvements in the efficiency of systems for the diagnosis and registration of childhood cancers since the 1960s and 1970s will also have played a part UK Commissioning Reviews Around the UK, specialised commissioners have initiated reviews to ensure the configuration of cancer services for children meet modern clinical standards. In addition, surveys were conducted to determine current clinical needs at current children s centres (Commissioning Tertiary and Specialised Services for Children and Young People, Royal College of Paediatrics and Child Health, 2004). Three key national findings were: o Limited capacity to care for children with malignancy due to lack of trained medical and nursing staff. 11

12 o Reliance on voluntary organisations for the provision of services. Childhood cancer charities, particularly CLIC Sargent Cancer Care for Children, Teenage Cancer Trust, Macmillan and Cancer and Leukaemia in Childhood provide a significant proportion of the funding required by local multidisciplinary teams o The need to ensure adequate provision of designated age appropriate facilities for adolescents and young people. 1.3 General Overview The Provider, the Newcastle upon Tyne Hospitals NHS Foundation Trust (NuTH) will provide care for children and young people with cancer to the Co-ordinating Primary Care Trust (NHS North of Tyne) and all other Primary Care Trusts across NECN in line with this specification. 1.4 Objectives The Provider will deliver cancer care and improve outcomes in accordance with the NICE National Guidance for Children and Young People with Cancer (2005). This includes meeting the national standards for: specifying appropriate referral pathways adhering to and facilitating the cancer specific referral pathways establishment and management of Multidisciplinary Teams by cancer type provision of appropriate psychosocial support for children and young people and their families treating patients in line with the National Cancer Research Network (NCRN) Children s Cancer and Leukaemia Clinical Studies Group (CSG)/CCLG trials treating patients in line with CCLG and CYPCG agreed guidelines where an appropriate trial is not available or consent for recruitment not given facilitating transition to teenage and adult services supporting and developing shared care services maintaining and developing supportive care guidance (taking account of NICE supportive and palliative care IOG) delivering and supporting palliative care services across the pathway(taking account of NICE supportive and palliative care IOG) developing and delivering a long term follow up model delivery of age appropriate care in age appropriate settings delivery of care by a workforce specialised in the care of children with cancer supporting families and carers of children with cancer training for staff to deliver the children s cancer service development and production of appropriate patient and carer information supporting regional and national cancer data collection entry of patients to clinical trials have an active audit programme and be able to demonstrate that the team is delivering services in line with the NICE Improving Outcomes Guidance and NUTH standards 1.5 Expected Outcomes Provision of age-appropriate services to children with cancer Provision of safe, effective and timely services to children with cancer Services will meet relevant Patient Reported Outcomes Measures Services will be provided in accordance within national waiting times National guidance will be met 2.Scope 2.1 Service Description The Provider provide care for children and adolescents (0-18 years old) with cancer. The Provider will expect to treat a minimum of 70 new patients per annum in accordance with the national model to have centralised services although I tis recognised that this number may fluctuate year on year. The Provider is the Principal Treatment Centre for the care of children and adolescents with cancer 0-18 years inclusive. Patients aged years will usually be treated in the Teenage Cancer Unit within the Great North Children s Hospital (GNCH) or, if admitted into another ward or unit, their care will remain the responsibility of the PTC. The Principal Treatment Centre will serve the catchment population of NECN, approximately 3 million population and will expect to treat around new patients a year (0 18 years inclusive). Paediatric oncology is the term used to encompass all malignant conditions among children with cancer, including blood conditions such as leukaemia. The doctors involved, paediatric oncologists and paediatric haematologists, and other clinical personnel involved in the service, will work within a national framework to ensure they provide the most effective care. Treatment for each type of childhood cancer follows specifically designed protocols - a national UK protocol or in some cases an internationally agreed protocol. The Provider will provide the service in line with protocols developed by the NCRN Children s Cancer and Leukaemia CSG/CCLG, a national network of multidisciplinary organisations which advance the care of children with cancer through clinical research. The ultimate objective of these groups is to improve the outcome of children with poor prognosis and maintain high cure rates among children at lower risk, whilst reducing long term toxicity associated with treatment. The NCRN Children s Cancer and Leukaemia CSG/CCLG is a network of over 20 UK treatment centres. The expertise of these organisations is acknowledged by the associated Royal Colleges and by NICE. In addition BMT (Blood and marrow transplantation) is an accepted and effective treatment for children with specialised malignancies as listed in UK Indications table. The Provider will adhere to agreed protocols and guidance related to provision of this service. 12

13 2.2 Accessibility/acceptability The Provider will ensure that the service offered is respectful and must not discriminate on the grounds of age, gender, sexuality, ethnicity or religion. The service should be sensitive to the needs of patients whose first language is not English and those with hearing, visual or learning disabilities. All aspects of the service must be compliant with Equality and Diversity and the Provider must comply with current legislation and local and national policies and standards in relation to Equality & Diversity. The Provider has in place policies and practices for ensuring that its services are accessible to all, and deals sensitively with all service users, potential service users and their family/friends and advocates. Some patients in the region may have to travel significant distances for specialist care. The Provider and the Children & Young People Coordinating Group will develop shared care arrangements to ensure that patients receive appropriate care closer to home when clinically appropriate to do so and in line with Peer Review requirements. The NUTH Paediatric Oncology Outreach Nurse Specialists also provide palliative care in patient s homes. 2.3 Whole System Relationships The Provider hosts the majority of services required from the IOG including : o Specialist children s surgery and, for the purposes of this specification includes neurosurgery o Other Site Specific MDTs o A Teenage Cancer Unit o A Young Adult Cancer Unit o Radiotherapy services o Paediatric and adult intensive care units, on site The Provider works in conjunction with the Paediatric Oncology Shared Care Unit at West Cumberland Infirmary in Whitehaven. As shared care arrangements with other Trusts and units develop, the Provider will work in partnership with those organisations. 2.4 Interdependencies Occasional referrals are made to specialist services out with the North of England Cancer Network catchment area. Referrals to these services will be made on a case by case basis according to specific criteria: o Retinoblastoma service at Birmingham Children s Hospital o Major paediatric hepatic surgery (supra-regional units, Birmingham or Leeds) o Specialist Radionuclide therapy at University College Hospital o Proton Beam Therapy Units (currently based overseas) as determined by the Proton Therapy Selection Panel 2.5 Relevant Networks and Screening Programmes The Provider will input into Networks and Screening Programmes as appropriate. These will include but may not be limited to: o Children s Cancer Research Group based at the University of Newcastle s Northern Institute of Cancer Research o North of England Cancer Network o National Cancer Research Network (NCRN) 3. Service Delivery 3.1 Service Model The service model provided by the Provider will reflect the NICE IOG and cancer peer review measures. The following will apply to all groups of patients: Discussion of all cases will take place at the weekly Children and Young People MDT and Site Specific MDT as appropriate For those patients aged years old they will also be discussed in the TYA MDT As per the NICE guidelines where there are open therapeutic trials (e.g. via the NCRN Children s Cancer and Leukaemia CSG), the Provider will ensure that this group of patients has access to those trials In the absence of an appropriate clinical trial the patient will be treated according to CCLG determined guidelines unless there is an agreed indication at the appropriate MDT for an off-protocol therapy or in the case of a young person, clear evidence of better outcome on an adult protocol Shared Care The North of England Children & Young People Cancer Network s shared care philosophy is based on the assumption that children and young people with cancer will benefit from care delivered in partnership with a paediatric oncology shared care unit located closer to home at appropriate times. The Provider will support any designated paediatric oncology shared care units to achieve the above. The Provider will also support the development of further appropriate shared units as agreed at the Children and Young People Coordinating Group. A level 1 (option 2) shared care arrangement is in place at the West Cumberland Infirmary at Whitehaven. There should be a formal Trust to Trust agreement between the Principal Treatment Centre and the Paediatric Shared Care Unit covering both the managerial (activity/costs) and the clinical (standards, guidelines, treatment protocols, drug lists etc) aspect. 3.2 Care Pathways In line with national guidance Principal Treatment Centres must have written referral pathways. The referral pathways below summarise the agreed pathways for referral to the Principal Treatment Centre or specialised centre 13

14 3.2.1 Haematological Cancer Leukaemia and Lymphoma All patients in whom a diagnosis of leukaemia is suspected will be referred to the consultant paediatric haematologist or paediatric oncologist on call at the NUTH who will then arrange admission for initial investigations history and physical examination, haematological and bone marrow examination and lumbar puncture where indicated. Patients will be discussed at the Children and Adolescent MDT and will be managed within the NUTH Central Nervous System Tumours The preferred initial referral route for patients under 16 years will be to the paediatric oncologist on-call who will arrange assessment and liaise with the paediatric neurosurgeon. The consultant paediatric neurooncologist, consultant paediatric neurosurgeon and the Multidisciplinary Team will inform each other of any referrals. Patients will be discussed at the Children and Adolescent MDT which includes Neuro-oncology specialists hosted by the NUTH as one of the two Neurosurgical Centres for the North of England. For all patients neurosurgery will be at the NUTH Solid Tumours Pathway All patients in whom a diagnosis of malignant solid tumours is suspected will be referred to the consultant paediatric oncologist on call at the NUTH. He/she will then arrange for out-patient, day care or in-patient admission at the NUTH for initial assessment. Patients will be discussed at the appropriate MDT and in an additional site specific MDT if appropriate Bone Sarcoma For all patients in whom a diagnosis of bone sarcoma is suspected referral is either directly to the Orthopaedic Oncologists at the NUTH for biopsy or to the on-call paediatric oncologist for initial assessment and referral for biopsy. Treatment planning and subsequent nonsurgical therapy will be carried out by the paediatric and adolescent oncologist team at the NUTH. Bone sarcoma services are provided in conjunction with the National Specialised Services Commissioning Group (NSSCG) requirements. Retinoblastoma Patients with Retionoblastoma are managed in conjunction with the NSSCG Retinoblastoma service at Birmingham Children s Hospital Bone Marrow Transplantation (BMT) Patients referred for bone marrow transplantation will be discussed at the Paediatric BMT Multidisciplinary Team meeting Bone Marrow Transplantation services are provided on site at the children s Haemopoietic stem cell transplant unit at the NUTH. The NUTH is seeking JACIE accreditation of the BMT services Radiotherapy The radiotherapy service for children and adolescents at the NUTH patients is well established. It provides most aspects of radiotherapy and radionuclide therapy services required. Very young children requiring therapeutic radionuclide e.g. MIBG therapy for neuroblastoma will be referred to the unit at University College London. Occasional patients requiring proton beam therapy are referred (after agreement with the national panel) to one of the units based overseas Chemotherapy and Supportive Care Chemotherapy and supportive care is provided at the NUTH Long Term follow up Long term follow up is an important requirement of the NICE Improving Outcomes Guidance. Long term follow up will be delivered by the NUTH and will follow national guidance. The NUTH initiative on redesign of transition of care is ongoing and aims to To standardise LTFU approach and documentation To ensure access to fertility support is clear 4 Referral, Access & Acceptance Criteria 4.1 Geographic Coverage/Boundaries This specification covers specialised children s cancer services for those children and young people (0 18 years) living in those Primary Care Trusts (PCTs) covered by the North of England Cancer Network and North East Specialised Commissioning Operational Group. It relates to all treatment co-ordinated and delivered by the Principal Treatment Centre (PTC) at the NUTH. 14

15 There may be occasions where children and young people aged 0-18 years from outside the area choose to be treated at the NUTH or are admitted as emergencies and the management and treatment of these cases will be covered by this specification. 4.2 Location(s) of Service Delivery All services except those specified in section 2.4 Interdependencies are provided at the NUTH and the majority of these are provided at the Great North Children s Hospital on the Royal Victoria Infirmary site Inpatient, Day Care, Outpatient, Surgical, Diagnostic, Intensive Care and Radiotherapy Facilities at NUTH Inpatient Care: For children and young people aged 0-18 years, in-patient care will be at Great North Children s Hospital Royal Victoria Infirmary providing cancer diagnosis, cancer treatment expertise, psycho-social support and surgical cancer therapy. Inpatient care for young people aged yrs will usually be provided in the Teenage Cancer Unit Radiotherapy treatment will be provided at Northern Centre for Cancer Care, at the Freeman (FRH) site of the NUTH. Where general anaesthesia is required this is provided by FRH paediatric anaesthetist. As stated in section 2.4 Interdependencies, occasional referrals are made outside of the NUTH for radionuclide treatment, radiotherapy for retinoblastoma and proton beam therapy Day Care facilities: There will be separate day care facilities for children and young people with cancer which will include waiting and play areas. Day care at Great North Children s Hospital Royal Victoria Infirmary will include outpatient chemotherapy, blood transfusion, patient assessment, bone marrow examinations and administration of intrathecal chemotherapy. General anaesthetic facilities for children and young people undergoing painful procedures (bone marrow examination and administration of intrathecal chemotherapy) will be provided at the Great North Children s Hospital Royal Victoria Infirmary. Outpatient facilities: There will be separate outpatient facilities for children and young people at Great North Children s Hospital Royal Victoria Infirmary Cancer Surgery: Surgery for children and young people with solid tumours, including bone sarcoma and liver tumours will usually be undertaken at RVI/NUTH. Surgery for children with retinoblastoma will be undertaken by Children s Hospital, Birmingham. High Dependency Care / Intensive Care Children and young people requiring intensive care will be rapidly assessed by the 24 hour on site paediatric and anaesthetic teams and transferred to the PICU (Paediatric Intensive Care Unit) within Great North Children s Hospital Royal Victoria Infirmary as required. 4.3 Days/Hours of Operation Inpatient Services: 24 hours / seven days a week for new referral of patients and acute referrals Day case: 5 days a week Monday to Friday Outpatient Clinics: 5 days a week Monday to Friday 4.4 Referral criteria and source The NICE National Guidance on the referral of children with suspected cancer is incorporated into local network referral and treatment pathways. Either a practitioner believes a child has a suspected cancer or initial tests have determined a cancer is present. 4.5 Referral routes The referral routes are: GP referral to a local paediatric service or direct to the Principal Treatment Centre under the 2 week wait rule Referral from a District General Hospital paediatric service Acute referral from an A&E department Acute Referral from another specialist children s cancer or non cancer service Occasionally referral will be made from an adult cancer or other adult service In all cases referral should be made to the on-call paediatric oncologist or paediatric haematologist preferably via telephone or fax to the Provider. The Provider aims to see patients within 48 hours, via early referral routes. 4.6 Any Exclusion Criteria In rare but appropriate circumstances it may be acceptable for a patient over 19 years old at diagnosis to be treated by the Provider s Paediatric Oncology Team but the majority of young people over 19 years old are excluded from this specification. Certain components of specialised treatment may need referral onwards as highlighted in the service model section 4.7 Response Time and Prioritisation The Provider will respond to referrals in line with national guidance. If the Provider does not have capacity to accept the patient the service must liaise with other Principal Treatment Centres to arrange an alternative admission to a Principal Treatment Centre or specialist service. The Provider must inform the Lead Commissioner of capacity issues or any other reason it cannot provide the services as detailed in this specification within 1 working day. 15

16 5 Discharge Criteria and Planning Principal Treatment Centres are required to work with other Principal Treatment Centres and shared care units to proactively manage transfers and discharges. The Principal Treatment Centre will ensure timely and appropriate communications with services who are expected to provide other parts of the patient s pathway in compliance with national and children s cancer guidance. 6 Prevention, Self Care and Patient and Carer Information The Provider will provide information, advice and support as described in the Improving Outcomes Guidance 7. Continual Service Improvement/Innovation Plan The Provider will seek to continue to improve services and detail these in its work programme, which will be shared with Commissioners, and contribute to the Children & Young People Coordinating Group work programme. This will help inform how the service is being provided, areas where improvement or developments could be made and suggestions as to how these could be effected. This may include, but is not restricted to, some or all of the following areas: capacity, referrals, staffing issues, quality issues. 8 Service Monitoring The Provider will, in accordance with Peer Review measures, provide service monitoring information on a 6 monthly basis to the Children & Young People Coordinating Group. This will cover the following: performance against waiting times cancer registration specified clinical outcome audits clinical trial entry rates patient reported outcome measures providing data required to support designation process. 16