Children & Young People Cancer Network (CYPCN) Children & Young People Co-ordinating Group (CYPCG) Work Programme (Children) 2014 2017 Document Information Title: CYPCN Author: Sue Cornick, Head of Specialised Commissioning- chair Circulation List: CYPCG Contact Details: Claire McNeill, Peer Review Co-ordinator Telephone: 011382 52976 Version History: Date: 24.06.14 Version: v0.4 Review Date: March 2015 Document Control Version Date Summary Review Date V0.4 24.06.14 Workshop updates March 2015 V0.3 07.01.2014 Reviewed and updated March 2014 1
The Work Programme has been agreed by: Position: Name: Organisation: Date Agreed: Chair of the CYPCN and CYPCG Sue Cornick, Specialised Commissioning, Position: Principal Treatment Centre Lead Clinician (Children) Name: Dr J Hale Organisation: Newcastle upon Tyne Hospitals NHS FT Date Agreed: 21.08.14 Position: Name: Organisation: Date Agreed: Principal Treatment Centre Lead Clinician (Teenage and Young Adults) Dr E Lethbridge Newcastle upon Tyne Hospitals NHS FT The CYPCG members agreed this Work Programme on: Date Agreed: Review Date: 2
Contents Page Service Improvement & Development 4-5 Patient & Carer Feedback & Involvement 6 Research 6 Actions from Previous Peer Review Assessments 7-8 3
Service Improvement and Development Key Areas Aims/Actions Lead Target Date Update Membership of CYPCG Children s Commissioning Strategy Service Developments Review the membership and terms of reference of CYPCG. Review the Children and Young People Commissioning Strategy and incorporate any actions into the work programme Investigate the possibility of developing Shared Care provision already in place. Seek advice from CRG about national direction. Chair CYPCG Annually June 2014 Chair CYPCG Annually See appendix for Children s Commissioning Strategy Chair of CYPCG June 2014 Strategy covers 2012/13 2017/18 Draft service spec produced for ALL blood sampling service. JCUH interested in providing this service. Implement the action plan from the CYP Survivorship project. Focus on risk stratification, nurse led clinics and low risk discharge. Consultant Paediatric/Adolescent Oncologist - Rod Skinner & CNS April 2015 Workforce Developments Meet IOG staffing requirements or identify gaps Children s Cancer Services Cancer Unit Manager Completed with a few exceptions identified on risk log Attract suitable candidates for Children s interventional radiologist post PTC Lead Clinician (Children) 4
Service Improvement and Development Key Areas Aims/Actions Lead Target Date Update Training and Education Identify the training development needs across the Network PTC Lead Clinician and Lead Nurse PTC Sep 2014 Principal Treatment Centre considering low risk regimen training Trust Lead Cancer Nurse Feb 2014 Low risk regimen training to be reviewed for compliance with Network chemotherapy policy JB/JP Dependent upon above date Peer Review To develop and ratify all documents required for Peer Review Clinical governance and quality improvement development programme Annual Report, Constitution & Work Programme to be uploaded for Peer Review Children s Protocols: Children s network wide clinical guidelines and shared care protocols reviewed in line with peer review requirements and on the NECN website within the Constitution Peer Review coordinator to work with PCT Clinical Lead and CYPCG Chair PTC Lead Clinician (Children) with Paed Onc team June 2014 June 2014 5
Research Patient & Carer Feedback Key Areas Aims/Actions Lead Target Date Strengthen patient and carer involvement on the NSSG and CYPCG To identify suitable patients/carers to attend or methods of feeding back patient and carers views into the CYPCG Lead Nurse PTC Ongoing Update To To promote integration of research into routine practice Contribute NCRN accrual targets Maintain a balanced portfolio. Ensure NSSG members and relevant clinicians are updated about new trials Promote equity of access for patients in relation to trials Portfolio can be viewed by all on NECN website Annual review of MDT reports relating to local portfolio and accrual Encourage recruitment into trials particularly RCT trials Review of accrual Identify good practice Identify barriers to accrual NECN Research Networks. NSSGs MDT S NECN Research Networks. NSSGs MDTs June 2014 repeated annually June 2014 repeated annually 6
Facilitated Workshop Afternoon Post It Exercise 2014 Achieved or Completed To be continued or started Too Hard to do 17 th March Clinical Trials Opportunity to review & improve research activity with the new research network To open more trails to enable easier access for TYA trials TYA programmes of improvement to be fed back to CYPCG Must develop pathway that ensures access to age & disease appropriate trials for 18+ age group. If patients need referring this should happen TYA portfolio of trials in common malignancy groups needs to be active/up to date i.e. top 5! & Expert Guidance Accurate recording of TYA trials recruitment across Network including patients that decline trials entry with documented reasons why? Access to trials Education & Awareness Engagement with TCT Regional Education Manager Teenage Cancer Awareness Week Supporting newly diagnosed families on discharge Transition knowledge about services available to transition to. TYA Regional Roadshow Staff training and understanding or the different needs of children in any shared care setting (versus adults) Training & staff development TYA specific Patient info for designated hospitals Educating other areas/cns/consultants on when to refer patients to our services Ensure referring units (16-18 age group) have appropriate picture of teenage unit Increase publicity & Awareness. Make more use of Cancer Information Centres Long Term Follow Up Long Term follow up service developed for paediatric oncology Develop end of treatment summaries/late effects MDT/supported self-management for TYAs Further developing the long term follow up clinic for Paeds Nurse Led Clinics, Telephone clinics, discharge and selfmanagement Need long term follow up plan for patients. Setting up a long term follow up service for TYA Late effects MDT / Clinic for young adults. How do we work with ALL oncologists from across the region? Long Term Follow up pathways for patients 19-24 years at diagnosis too many people / clinical trials Where to start funding/resource equitable service! 7
Achieved or Completed To be continued or started Too Hard to do Pathways Palliative care and death in place of choice for children and teenagers New ideas for network-wide audits on aspects of TYA service e.g. Patient choice of place of treatment how offered, what supporting info/media used to inform decision, how documented Develop pathway for follow up on completion of 1 st line treatment for TYAs TYA pathway for follow up on completion of 1 st line treatment for all cancers TYA 1 st line treatment to be reflected in all cancer pathways Age appropriate palliative care for young adults Transition for children and teenage service to young adult service stepping stones, pathway service to pass on CYPCG Network Group The name of this group CYPCG is this relevant? Review membership, ToR etc. to ensure fit for purpose Patient reps need to think of most effective way to engage and feed back Review purpose of NSSGs for TYA & Paeds? to continue? Attendance needs to be part of on-going development TYA Designation Designation of Services excellent piece of work TCT engagement with Designated Centres Designated Hospitals allocated and peer reviewed Other Hospitals joining as designated hospital Social worker Process of de-designation, how do we take charge of the services? Develop meaningful dialogue about choice of place of care for 19-24 years (not just geography) Provision of age appropriate facilities/environment within designated centres Clarity & transparent process for designation/de-designation with the Area Team Commissioning?Possible to bring commissioning discussion more meaningful to this group (CYPCG) Transition Transition of teenagers, post primary treatment Transition from child & teenage services to young adult services pathway, next steps, service to pass on to! Commenced pathway for patient aged 19+ who has completed primary treatment and relapsed within PTC. Need to address transition to designated hospital and if it is appropriate Professional representation from <19 s & <24 s at TYA MDT i.e 8
Achieved or Completed To be continued or started Too Hard to do MDTs Patients Parents Carers Discharge POSCU(s) Peer Review Parent/Patient experience survey developed social worker, psychologist, youth worker, palliative care to facilitate shared knowledge/experience, support, meaningful transition discussions, team /service build up. Need to continue to discuss all TYA patients at MDT from designated hospitals & PTC Equivalent representation at MDT from paeds adults to support transition Improve links/communication within hospitals re: TYA patients for MDT Requirement for cancer MDTs concerning common TYA malignancies to report on trials recruitment numbers annually. Need to improve this process Improve awareness of cancer MDTs across network. Need to refer TYA for discussion in TYA MDT. NB this peer review measure wording likely to change from should be discussed in TYA MDT to must Transition information and documentation Develop patient / parent service user groups for support and to use as a resource to gather feedback information Look at membership of the group Voice of the patient. If we don t have a patient how do we get their opinion on services.? focus groups to discuss service issues End of Treatment Summaries Treatment summaries are time consuming how do we tackle this? Need for supportive care closer to home Shared care for aped/teenage patients needs to be developed Progress of supportive care at other hospitals may lead to shared care ALL shared care blood tests at JCUH and then expansion of more shared care work Need to develop and support existing POSCU and develop (small numbers) of additional POSCUs (for supportive care only Made difficult by cancer IOG requirements. TYA Pathway for follow up on completion of first line treatment for all cancers 9
Achieved or Completed To be continued or started Too Hard to do Patient choice. 16-18 years of age. Adults at 18 how do you enforce this choice when they are adults New ideas for network-wide audits on aspects of TYA service e.g. Patient choice of place of treatment how offered, what supporting info/media used to inform decision, how documented Protocols Workforce Staffing Voluntary & Charitable Excellent development of paediatric oncology protocol regimes Provision of nurse specialist and YSC posts with funding from charities initially. Great support from TCT environment and staffing Would be great to have set protocols for treatment follow up so PTC & designated hospitals have similar We have protocols; however some patients do not fit into protocols and need agreed flexibility how do we do this? Need to develop treatment / management protocols appropriate to common malignancies for TYAs as guidelines across Network. Need to work with NSSGs to do this Need for social worker outreach at designated hospitals Social worker issues Youth support worker. Second social worker. Outreach service across region Provision of TCT youth support co-ordinator based at Freeman Hospital NCCC Need second social worker to facilitate outreach across network & designated hospitals Need to resolve social work support issue to TYA Do voluntary and charitable organisations have a voice for the patients access to this voice? How to harness monies available from charitable services and use them effectively. Benchmarking with other services. What Else? Creating relationships/links with the other NSSGs. Do they know what this group does? Long Term provision of TCT youth support co-ordinator in an outreach role across region. New ways of thinking outreach worker from nursing for TYAs across region Need for more oncology inpatients beds and outpatient area 10
Drill Down into 4 selected areas from workshop 1. CLINICAL TRIALS Area of Work Year 0 (2014) Year 1 (2015) Year 2 (2016) Year 3 (2017) Programme of Improvement for Peer Review Circulate MDT trials form to CYPCG and NSSG s for comment MDTs to use new form to collect trial data for 19-24 years Is data being captured and is it complete? Develop a mechanism to ensure that relevant NSSGs and CYPCG receive feedback on data collected. In turn MDTs should be made aware of feedback. Continue the model that haematology used to identify protocols and clinical trials for 19-24years and 16-18 years Identify Paed Oncologists sub specialities and request assistance to work with NSSGs Inform NSSGs of plans to work with paed oncologists Relevant NSSGs to work with paed oncologists to adopt the Haem Model TYA service to inform NSSGs of the impact (if any) National Process for opening Clinical Trials Understand what the national process for opening clinical trials is. Is there a role for advocacy / appeal? Angela Birt to investigate. 11
2. EDUCATION AND AWARENESS Area of Work Year 0 (2014) Year 1 (2015) Year 2 (2016) Year 3 (2017) Raise Awareness of Services and when/how to refer Written guidance for referring units. Face to face sessions from TCT & TYA CNS. Develop an information leaflet about place of choice of treatment to give to patients Audit pathway compliance Review information leaflet Review pathway compliance and make changes if necessary Annual review of patient info leaflet Annual review of patient info leaflet Reduce delays in diagnosis of TYA cancers Promote a TYA regional roadshow that raises awareness of signs and symptoms Encourage Health Centres and General Surgeries to adopt the You re Welcome Programme to make them more young people friendly. Identify the training needs of GPs Develop a strategy to incorporate the use of social media and further refine the signs and symptoms message 12
2. EDUCATION AND AWARENESS Area of Work Year 0 (2014) Year 1 (2015) Year 2 (2016) Year 3 (2017) Educate GPs in line with their needs at Time in Time out sessions and/or create an online podcast etc. that can be circulated. Improve the understanding of the needs of TYA s within designated adult services (and non-designated services Increase knowledge and understanding of teenage needs and resources through forums such as NSSGs Create information tailored for professionals that explains the ethos of TYA MDT and the specific needs of this age group TYA Nurse specialist to provide educational presentations to designated and nondesignated trusts. 13
3. PATHWAYS Area of Work Year 0 (2014) Year 1 (2015) Year 2 (2016) Year 3 (2017) Agreed pathway for primary treatment TYA lead nurses, clinicians and site specific clinical leads to discuss pathway. Collectively develop a pathway Pathway sign off from NSSGs Ensure all MDTs are made aware of pathway, through NSSGs, letters to clinical directors, Trust Cancer Leads Review implementation of new pathways. Pathway for complex and rare tumours such as neuroblastoma and complex brain Same as above but with expert clinician aim to develop shared care pathways. Sub working group established Shared pathways complete, endorsed and rolled out Planned transition pathway for all patients who reach 19 th Birthday, complete 1 st line Tx and/or have relapse. Develop end of treatment summaries Extend the Long Term Follow Up MDT to 24 years Pilot the use of the treatment summaries Roll out treatment summaries 14
3. PATHWAYS Area of Work Year 0 (2014) Year 1 (2015) Year 2 (2016) Year 3 (2017) Non designated pathway and 19 years + who opt out Work with relevant NSSGs nondesignated trusts to create a pathway which clearly identifies roles and responsibilities Roll out this non-designated pathway and opt out pathway with a clear communication strategy. Education to be delivered to non-designated trusts about access to clinical trials, specialist support etc. 15
4. Long Term Follow Up Area of Work Year 0 (2014) Year 1 (2015) Year 2 (2016) Year 3 (2017) Nurse Led Follow up Clinics <19 years Risk stratify which patients would be eligible for nurse led follow up LTFU CNS to complete clinical training and establish new clinic Review progress of clinical activity and if plausible develop shared care for low risk patients Patients age 19+ Develop end of treatment summary document Roll out use of treatment summary Establishment of nurse led late effects MDT for 19-24 years (resource needed)???????what else Self-management for low risk patients Risk stratify which patients would be eligible Develop a pack for GPs which details their role and responsibilities if patients present at their practice Education for patients about how to selfmanage, how to get back into the system and when to be concerned. Include within this healthy lifestyle advice. Survivorship education days for GPs, patients and families 16
Actions from Peer Review Visit, 01.12.11 (Children) Serious Concern Action The model of care is over centralised and patients have to travel An action plan has been developed for the next 18 months to unnecessarily for care progress shared care arrangements. A progress report was There has been a lack of progress in the development of shared provided in June 2012 care arrangements with no clear plan in place to address this in the short to medium term Concerns Action Lack of progress in the development of a three year service delivery As above plan including the establishment of shared care arrangements No POSCU MDT established in Whitehaven POSCU MDT commenced November 2011 Lack of appropriate levels of training to support POSCU and Appropriate training programme provided to support POSCU and community staff community staff by PTC Other Non Compliant Areas Action 11-7A-109, CCNCG Annual Report To send to Director of Children's/Young Adults services for each Local Authority 11-7A-110, CCNCG Proposals for Service Development - Not a To review/update three year plan Mark Adams with CYPCG three year plan 11-7A-134, CCN internal training programme - No detailed training Training programme available from PTC programme available 11-7A-138, CCN guidelines/protocols for the referral of patients with NUTH compliant; referral criteria not required in NUTH evidence; to complications related to chemotherapy - No information regarding develop - Juliet Hale 28.05.12 referral criteria for symptoms 11-7A-143, CCN annual clinical trials discussion - No minutes available To ensure discussion takes place and minutes are submitted as evidence - Juliet Hale/Carol Mayes - June 2012 Recommended action following above outcome Self Assessment 2012 17
Actions from Peer Review Visit, 01.12.11 (Commissioning) Concerns Commissioners have delegated the responsibility to develop a commissioning strategy to the Network which has resulted in a lack of commissioning ownership and any strategy to move services closer to the patients home Patients and carers should be enabled to participate in service development/improvement work. Other Non Compliant Areas 11-8A-102, The delegation agreement 11-8A-104, The children's cancer commissioning strategy Action Commissioning responsibilities are clear and agreements in place. Action plan in place for development of shared care and strong commissioning involvement in taking this forward. PTC has excellent patient involvement mechanisms and is feeding this into the CYPCG. This is also included as part of the work programme. Action Addressed in Concern above Commissioning Strategy developed 11-8A-105, The service specification 11-8A-106, The contracts and SLAs 11-8A-107, Service monitoring Developed Developed 6 monthly monitoring has been included within contracts and process in place. 6 months have yet to elapse. Recommended action following above outcome Self Assessment 2012 18