The Scottish Referral Pathway for Consideration of Funding

Proton Beam TherapyScottish Pathway for Consideration of FundingRelease: v 1.4Date: May 2011Lead: Dr Mike WinterMedical DirectorAuthor: Janice BirrellProgramme Manager1

DOCUMENT CONTROLKey PersonnelTitle:Author:Approver:Owner:Proton Beam TherapyScottish Pathway for Consideration of FundingJanice Birrell, Programme ManagerDr Mike Winter, Medical DirectorsJanice Birrell, Programme ManagerVersion HistoryDistributionVersion Date Summary of changes ChangesmarkedV0.8 May 2010V1.0 July 2010 Appeal Process / Updated clinical JB MWV1.1 August2010indicationsUpdate as a result of feedback fromthe Scottish Radiotherapy AdvisoryGroup (SRAG)V1.2 September2010Update as a result of updated e-mailaddresses for NHS BoardsV1.3 November Updated hyperlink and e-mail2010 addressesV1.4 May 2011 Update in view of NSCT 2011updatesNameDivisionV1.0 Scottish Radiotherapy Advisory Group forratification.V1.1 Sarah Erridge, SRAG SecretariatJBJBJBJBReferencesDocument titleProton Beam TherapyScottish Pathway forConsideration of FundingDocument file pathJ:\E-Services\E48 - Proton BeamTherapy\Papers2

INDEX1. Scottish Pathway for Consideration of Funding of ProtonTherapy42. Scottish Pathway for Access to Proton Therapy 6Appendix 1Clinical Indications with High Priority for Funding forProton Therapy (NSCT March 2010)8Appendix 2 Referral Form 9Appendix 3 Contact List 123

1. Scottish Pathway for Consideration of Funding of ProtonTherapyThis paper sets out an agreed pathway for use by all Clinical Oncologistsand others who would wish to refer a patient for Proton Therapy funded byNHS Scotland.1.1 Proton Therapy is a specialist treatment commissioned at present on a UKwide basis by the National Specialised Commissioning Team (NSCT) inLondon. Access to all UK specialist services for patients from NHS Scotlandis managed by National Services Division (NSD) within NHS NationalServices Scotland.1.2 A cycle of Proton Beam Therapy will typically involve one short visit (2- 3days) to the treatment centre for detailed assessment and treatmentplanning, followed by an extended stay (up to 8 weeks) for delivery ofmultiple treatment fractions (45-60 minutes daily).1.3 Proton Therapy is currently only provided by a small number of treatmentcentres all of which are based outwith the UK. Approval for referral of anindividual case for Proton Therapy is given by the UK Proton Panel (NHSLeeds), and carries a guarantee of NHS funding for the course of treatment.Invoices are sent from the treatment centre to NSCT in London (NHSBoards in Scotland should contact NSD Programme Manager – contactdetails listed at appendix 3).1.4 Patients will however require financial support towards cost of travel andsubsistence from their NHS Board of residence as the NSCT cannot providefunds ahead of expenditure nor reimburse a patient directly. The NSCT willhowever reimburse the NHS Board for reasonable costs for the patient andone carer or relative and for two parents (for paediatric cases). It will be forthe NHS Board to determine if any additional support can be offered to othermembers of a family wishing to travel to the treatment centre.1.5 The decision to refer a patient for Proton Beam Therapy (PBT) will bebased on assessment of CLINICAL NEED.This will be done in 3 phases:1.5.1 Clinical Oncologist / Multi Disciplinary Team – diagnosis anddecision to seek approval to refer for Proton Therapy1.5.2 Scottish Non Standard Radiotherapy Advisers – recommendationto forward application to UK PBG, based on completed proforma(appendix 2) and review of images on PACS1.5.3 UK Proton Beam Group (UK PBG) – review of clinical case andimages, leading to formal APPROVAL TO REFER, this to include4

1.6 Once APPROVAL TO REFER has been given it will be the responsibility ofthe Clinical Oncologist to1.6.1 Inform the patient / discuss the preferred treatment centre based onclinical need,1.6.2 make the clinical referral and thereafter liaise with the chosentreatment centre, and1.6.3 agree arrangements for follow-up after patient returns fromtreatment.1.7 APPEAL PROCESS: The decision regarding approval taken and advisedby the UK Proton Panel is final. If the patient / family, supported by the referringclinician, wishes to seek alternative funding for proton therapy the only appealmechanism is via the individual Patient Treatment Requests (IPTR) within theNHS Board of residence of the patient as set out in Annex D of CEL 17 (2010).Should an NHS Board IPTR process consider that proton therapy should beoffered ALL COSTS for treatment, travel and subsistence will be theresponsibility of the NHS Board of residence. National funding is only available tocases approved by the UK Proton Panel.If there is any doubt about any aspect of this protocol please contact one of theScottish Non Standard Radiotherapy Advisors or the NSD ProgrammeManager listed at appendix 35

2. Scottish Pathway for Access to Proton Therapy.CLINICAL ASSESSMENT Diagnosis (see list of approved conditions at Appendix 1) / assessment that Patient meets clinical criteria Discussion of case at specialist multi disciplinary Team (MDT) meeting and agree Proton Therapy is optimaltreatment Patient seen by Clinical Oncologist after MDT meeting to discuss treatment plan, including risks and benefits andagree to apply for approval to referREFER FOR REVIEW Clinical Oncologist to make referral by fax/ email using standard Proton Treatment Referral Form (appendix 2) Send to Scottish Non Standard Radiotherapy Advisors for review(at July 2010: Sara Erridge, SCAN / David Hurman, NoSCAN / Allan James, WoSCAN ) All IMAGES must be available on national PACS archiveSPECIALIST REVIEW The case will be REVIEWED by the Scottish Non Standard Radiotherapy Advisors (minimum of two – in the rareevent of only one being available they will co-opt a specialist from outwith the referring cancer centre) All correspondence will be electronic (NHS account only) unless a teleconference including the referring ClinicalOncologist is required A decision will be taken within 2 weeks (usually less than 1 week)Recommendedfor ApprovalDeclinedReferral Form with recommendation sent to UK ProtonPanel by the Scottish Non Standard Radiotherapy AdvisorsReferring Clinical Oncologist will be advised that case hasbeen sent to UK Proton Panel and should forward to UKPanel the additional information they require e.g. pathologyand surgical reports copies of imagesScottish Non Standard RadiotherapyAdvisor to contact referring ClinicalOncologist to explain why declinedReferring Clinical Oncologist to advise Programme Manager NSD and patient’s NHS Board ofresidence that a clinical referral has been passed to UK Proton Panel for consideration (list ofcontacts - see appendix 3) If need for Proton Treatment approved by UK Proton Panel funding will be provided ona national basis through NSCT (London ) NHS Board will need to identify funding for travel/subsistenceDECISION BYUK PROTON PANEL6

DECISION BYUK PROTON PANELREFERRAL APPROVEDUK Proton Panel will advise referring Oncologist thatapproval grantedWill advise recommended Proton Centre(s) availableWill advise NSCT of approvalNSCT will advise NSD of approvalWill advise Scottish Non Standard Radiology AdvisorsREFERRAL NOT APPROVEDUK Proton Panel will advise: Referring Clinical Oncologist Scottish Non Standard RadiologyAdvisorClinical Oncologist to Engage with patient and discuss detailed treatmentplan Make Clinical Referral to chosen Proton TreatmentCentre Advise all invoices for treatment to be sent to NSCT(London) Inform NSD and NHS Board of intention to treat Liaise with Proton centre during delivery of treatment Agree follow up arrangements with Proton centreClinical Oncologist to: Engage with patient and consideralternative treatment options Liaise with Scottish Non StandardRadiology Advisor regarding reason forapproval not given7

Appendix 1CLINICAL INDICATIONS WITH HIGH PRIORITY FOR FUNDING FORPROTON THERAPY (NSCT March 2010)Currently the list of potentially funded conditions includes the following however,this list is up-dated regularly and can be accessed on the NSCT website athttp://www.specialisedservices.nhs.uk/serv/proton-beam-therapyThe core principles to be achieved include Treatment should be given with curative intent. The patient should have a good performance status WHO 0 or 1 No other coincident diagnoses that are likely to limit 5 year survivalAdult•Base of Skull & Spinal Chordoma•Base of Skull Chondrosarcoma•Spinal & Paraspinal Bone and Soft Tissue Sarcomas (NonEwing’s)Paediatric•Base of Skull & Spinal Chordoma•Base of Skull Chondrosarcoma•Spinal & Paraspinal ‘adult type’ Bone and Soft TissueSarcomas•Rhabdomyosarcoma Orbit Parameningeal & Head & Neck Pelvis•Ependymoma•Ewing’s Sarcoma•Retinoblastoma•Pelvic Sarcoma•Optic Pathway and other selected Low GradeGlioma•Craniopharyngioma•Pineal Parenchymal Tumours (not Pineoblastoma)•Esthesioneuroblastoma8

Appendix 2:Referral formNCG Proton Treatment Referral FormSurnameReferral DateFirst NameGender Male / FemaleDOBCHINHS number(if available)AddressHospital numberGP NameAddressPostcodePatient phone numberPatient emailDiagnosis / SiteReferring ClinicianTelephoneReferring CentreCentre AddressEmail addressSurgeonTelephoneHospitalPostal addressEmail address9

For Paediatric Cases:Anaesthetic required: YES / NO / UNCERTAINMain carer(s):Other siblings in family (gender and ages):Family members (including ages) who will need to travel and lodge with patient:History synopsisSymptoms -Date of first symptomDiagnosis -Operations -Date of diagnosisDate of 1st operationProcedureDate of 2nd operationProcedureClinical Summary(include Past Medical History)Clinical conditionNeurological deficitsMobilityCommunication abilityOverall performance status WHO / ECOG PS 0 1 2 3(scale shown below)(delete as appropriate)10

WHO/ECOG Performance Status*0 Fully active, able to carry on all pre-disease performance without restriction1 Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., lighthouse work, office work2 Ambulatory and capable of all self-care but unable to carry out any work activities. Up and about more than 50% of wakinghours3 Capable of only limited self-care, confined to bed or chair more than 50% of waking hours4 Completely disabled. Cannot carry on any self-care. Totally confined to bed or chairPresent medication:Allergies :Enclosures ChecklistHistology Report Y / NOperation Report Y / NImaging CD-ROM Y / NRadiology Reports Y / NForeign Language?Willing to Travel Y / NEmail to: leedsth-tr.protonNCG@nhs.net Help - Contact - 0113 2068602PLEASE NOTE: It is an NSCT requirement that THIS FORM and ALLsupporting information including relevant letters, summaries, operation reports,radiology/histology reports, imaging on CD-ROB are received before a case willbe officially processed and considered.NSCT Office Use*As published in Am. J. Clin. Oncol.:Oken, M.M., Creech, R.H., Tormey, D.C., Horton, J., Davis, T.E., McFadden, E.T., Carbone, P.P.,Toxicity And Response Criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol5:649-655, 198211

Appendix 3Contact List for Scottish Non Standard Radiotherapy AdvisorsNameCentre Centre safeemailTelephone faxSara Erridge 0131 537 1052 0131 537 3045 sara.erridge@luht.scot.nhs.ukAllan James - 0141 301 7061 allan.james@ggc.scot.nhs.ukDavid Hurman 01224 559570 01224 554183 david.hurman@nhs.netContact List for National Services Division/SGHDName Telephone Safe Fax emailNational Services 0131 275 6575 0131 275 7614Division (NSD)Janice Birrell 0131 275 6609as above janice.birrell@nhs.netNSD ProgrammeManagerDr Mike Winter 0131 275 7023as above mike.winter@nhs.netNSD MedicalDirectorNSD Finance 0131 275 7563as above12

Contact List for NHS BoardsNHS Board Contact Telephone /emailSafe FaxNHS Ayrshire &ArranDavidRobinson01292 610556 David.robinson@aaaht.scot.nhs.ukNHS BordersJaniceCockburn orLynn Bellis01896 828262 Janice.cockburn@borders.scot.nhs.ukLynn.bellis@borders.scot.nhs.ukNHS Dumfries& GallowayMairi Dunn 01387 244054 Mairi.dunn@nhs.netNHS Fife Craig Pratt 01592 643322Ext 8698Craig.pratt@nhs.netNHS ForthValleyNHS GrampianNHS G Glasgow& ClydeDr AnneMareeWallace01786 457277 Annemaree.wallace@nhs.netAudrey 01224 558565 Audrey.beattie@nhs.netBeattieAnn Hynds 0141 201 4551 Ann.Hynds@nhs.netNHS Highland Jane Lane 01463 704913 Jane.Lane2@nhs.netNHSLanarkshireNHS LothianNHS OrkneyNHS ShetlandNHS TaysideNHS WesternIslesYvonneAllanCharlotteCalviaSanjayShahDr SarahTaylorTerryAlexanderDr JamesWard01698 206373 Yvonne.allan@nhs.net0131 536 9162 charlotte.calvia@nhs.net01856 888225 Sanjay.shah@nhs.net01595 743072 sarahtaylor1@nhs.net01382 424103 terry.alexander@nhs.net01851708003 Jamesward@nhs.net13