1. Rehabilitation and Head and Neck cancer Head and Neck SSG Business and Educational Meeting 29 February 2012 Sally Donaghey Macmillan AHP Lead, Ang CN sally.donaghey@suffolkpct.nhs.uk/Tel: 01638 608218

2. Head & Neck Cancer and Rehabilitation Evidence based Rehabilitation Care Pathway – local version agreed by NSSG 2010 Evidence based Rehabilitation Care Pathway – local version agreed by NSSG 2010 QoL, ADL, physical, social, psychological and functional support (multi-professional clinics) QoL, ADL, physical, social, psychological and functional support (multi-professional clinics) Optimise treatment (nutritional status pre and post surgery, swallowing) Optimise treatment (nutritional status pre and post surgery, swallowing) Cost-effectiveness/benefits realisation Cost-effectiveness/benefits realisation QIPP QIPP

3. Issues and Initiatives in Rehabilitation Cancer rehabilitation nationally is comparatively under- developed and under-utilised. Cancer rehabilitation nationally is comparatively under- developed and under-utilised. Publication of National Cancer Rehabilitation pathways and evidence guide. Publication of National Cancer Rehabilitation pathways and evidence guide. Development of tumour specific local rehabilitation pathways Development of tumour specific local rehabilitation pathways Need for pathways to be integrated into main care/referral pathways and practice Need for pathways to be integrated into main care/referral pathways and practice –Guidance/Protocols at trusts as per pathway –Services directory – links to local pathway –Audits –Patient/User experiences Rehabilitation evidence reviews 2009/2012 Rehabilitation evidence reviews 2009/2012 Uniquely anticipatory Uniquely anticipatory

4. Complications in Head and Neck Cancer Patients Dysphagia Dysgeusia Communication impairment Trismus Xerostomia Mucositis Weight Loss/Anorexia Nutritional deficiency Respiratory compromise Fatigue Pain Weakness Reduced mobility/movement Oedema Anxiety Functional impairment/ADL Equipment needs

5. Specialist Head and Neck AHP’s (per 1million Pop.)

6. Workforce Mapping

7. Current WTE Specialist Posts for SLT and Dietetics in Head and Neck Cancer by Locality CambsNorfolkSuffolk Beds (In ANGCN) GTYWP’boro SLT1.61.01.000(0.8) Dietetics1.51.50.4000 Physio00.20000

8. WTE Specialist Posts in Head and Neck Cancer (all identified professions) per 100,000 population of locality.

9. Findings Relatively low numbers of AHP’s for population against national average Relatively low numbers of AHP’s for population against national average Variablity in specialist service provision between localities Variablity in specialist service provision between localities –Consider referral pathways –? Significant unmet need –Community support provided out of acute centres over a very large geographical area –? Rehab needs provided by generalist workforce –?potential significant risk for people with head and neck cancer

10. NICE 2004 Establishment of Local Support Team (LST) by every Cancer Unit or Cancer Centre which may also work on an out-reach basis and contribute to continuous assessment in an out-patient setting Establishment of Local Support Team (LST) by every Cancer Unit or Cancer Centre which may also work on an out-reach basis and contribute to continuous assessment in an out-patient setting LST to have access to the expertise required to manage the after-care and rehabilitation needs of all of its patients, working closely with Cancer Centre staff and primary health care teams to provide seamless care. LST to have access to the expertise required to manage the after-care and rehabilitation needs of all of its patients, working closely with Cancer Centre staff and primary health care teams to provide seamless care. The local support team should aim to ensure that the long-term needs of patients and carers are met. The local support team should aim to ensure that the long-term needs of patients and carers are met.

11. NICE 2004 SLT and dietician must form part of core membership of multi-disciplinary team SLT and dietician must form part of core membership of multi-disciplinary team SLT must be a specialist in head and neck cancer SLT must be a specialist in head and neck cancer Dietician must have specific expertise in managing head and neck cancer patients. Dietician must have specific expertise in managing head and neck cancer patients. Physiotherapy and OT practitioners should form part of the extended MDT and must have an interest in head and neck cancers and experience of dealing with these patients. Physiotherapy and OT practitioners should form part of the extended MDT and must have an interest in head and neck cancers and experience of dealing with these patients.

12. NICE 2004 The SLT in the MDT may delegate rehabilitation work to an SLT working in the community, but remain available to provide expert advice and assistance to the community SLT. The SLT in the MDT may delegate rehabilitation work to an SLT working in the community, but remain available to provide expert advice and assistance to the community SLT. Where the (LST) dietician does not have specialised knowledge of head and neck cancer, there should be close liaison between the dietician in the community and their counterpart in the MDT Where the (LST) dietician does not have specialised knowledge of head and neck cancer, there should be close liaison between the dietician in the community and their counterpart in the MDT Ongoing physiotherapy and input from OT will often be required by patients who have undergone radical treatment to the neck. Ongoing physiotherapy and input from OT will often be required by patients who have undergone radical treatment to the neck.

13. NICE 2004 The IOG estimates that each Network of approximately 1.5 million population will require an additional 5.3 WTE SLT and an additional 4.7 WTE dieticians The IOG estimates that each Network of approximately 1.5 million population will require an additional 5.3 WTE SLT and an additional 4.7 WTE dieticians Anglia Cancer Network population of 2.671 million: this = an additional 9.4 WTE SLT and an additional 8.4 WTE dieticians. Anglia Cancer Network population of 2.671 million: this = an additional 9.4 WTE SLT and an additional 8.4 WTE dieticians.

14. IOG recommended additional WTE Specialist Posts for SLT and Dietetics in Head and Neck Cancer by Locality, less current specialist provision. CambsNorfolkSuffolk Beds in Ang CN GTYWP’boro SLT0.61.71.11.00.75 0 (once 0.8 post in place) Dietetics0.40.91.50.90.70.5

15. National Workforce Modelling – Head and Neck ANG CN Incidence 2008 = 494

16. National Workforce Model WTE Workforce Requirements per Locality and Profession Cambs (96) Norfolk (167) Suffolk (111) Beds in Ang CN (40) GTYW (48) P’boro (32) Physio0.81.51.00.30.40.3 OT0.61.00.70.20.30.2 LT0.81.30.90.30.40.3 SLT5.08.85.82.12.51.7 Dietetics2.74.83.21.11.40.9

17. Day to day barriers Awareness of rehabilitation needs Awareness of rehabilitation needs AHP attendance at MDT/clinics AHP attendance at MDT/clinics Assessment tool for rehabilitation Assessment tool for rehabilitation Co-ordination of rehabilitation needs Co-ordination of rehabilitation needs Commissioning of rehabilitation Commissioning of rehabilitation Network Guidelines – treatment/diagnostic focus Network Guidelines – treatment/diagnostic focus Lack of resources Lack of resources

18. What Can the NSSG Do? NSSG Workplan NSSG Workplan Head and Neck Care Pathway – specific reference to rehab Head and Neck Care Pathway – specific reference to rehab Locality/clinician engagement Locality/clinician engagement Rehabilitation awareness Rehabilitation awareness Audit of referrals/interventions/patient surveys Audit of referrals/interventions/patient surveys

19. Key Messages Head and neck cancer rehabilitation is highly specialised Head and neck cancer rehabilitation is highly specialised –Needs clinical experience (case-load maintenance) + formalised learning Majority of rehabilitation and support for people with head and neck cancer extends well beyond the acute phase Majority of rehabilitation and support for people with head and neck cancer extends well beyond the acute phase Need to consider the whole pathway when planning service Need to consider the whole pathway when planning service Commissioning Commissioning Awareness of rehabilitation Awareness of rehabilitation Importance of rehabilitation Importance of rehabilitation

20. Head & Neck Rehabilitation Service Specification Hub Spoke Shared services with MVCN

21. Useful Links NCAT(2009). Supporting and Improving Commissioning of Cancer Rehabilitation Services Guidelines: http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_Commissioning.pdf NCAT(2009). Supporting and Improving Commissioning of Cancer Rehabilitation Services Guidelines: http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_Commissioning.pdf http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_Commissioning.pdf NCAT(2009). Cancer Rehabilitation Services Evidence Review: http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_EvidenceReview.pdf NCAT(2009). Cancer Rehabilitation Services Evidence Review: http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_EvidenceReview.pdf http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_EvidenceReview.pdf NCAT (2012) Cancer and Palliative Care Rehabilitation Evidence Review- Update: http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_EvidenceReview__2012FINAL24_1_12.pdf NCAT (2012) Cancer and Palliative Care Rehabilitation Evidence Review- Update: http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_EvidenceReview__2012FINAL24_1_12.pdf NICE Supportive and Palliative Care IOG 2006: http://www.nice.org.uk/nicemedia/live/10893/28816/28816.pdf http://www.nice.org.uk/nicemedia/live/10893/28816/28816.pdf QIPP: https://www.qippeast.nhs.uk/https://www.qippeast.nhs.uk/ NCAT (2011) Cancer Rehabilitation Workforce Model: http://ncat.nhs.uk/sites/default/files/NCAT%20Rehab%20Workforce%20model%20Briefing%20Paper.p df http://ncat.nhs.uk/sites/default/files/NCAT%20Rehab%20Workforce%20model%20Briefing%20Paper.p df NCAT (2010) Cancer Rehabilitation Workforce Mapping Exercise: http://ncat.nhs.uk/sites/default/files/NCAT_Mapping_Report_0.pdf http://ncat.nhs.uk/sites/default/files/NCAT_Mapping_Report_0.pdf NCAT (2009) Rehabilitation care Pathway – Head & Neck: http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_HeadAndNeck_0.pdf http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_HeadAndNeck_0.pdf Anglia Cancer Network (2010) Local Rehabilitation care Pathway – Head & Neck: http://www.angliacancernetwork.nhs.uk/documents/AngCN-CCG- PS27%20Rehabilitation%20Pathway%20for%20Head%20and%20Neck%20Cancer_v2.pdf http://www.angliacancernetwork.nhs.uk/documents/AngCN-CCG- PS27%20Rehabilitation%20Pathway%20for%20Head%20and%20Neck%20Cancer_v2.pdf Anglia Cancer Network (2011) Interim Service Specification and Needs Analysis: http://www.angliacancernetwork.nhs.uk/documents/AngCN-CCG-PS48_v1r.pdf http://www.angliacancernetwork.nhs.uk/documents/AngCN-CCG-PS48_v1r.pdf NICE (2004) Improving Outcomes in Head and Neck Cancers – The Manual: http://www.nice.org.uk/nicemedia/live/10897/28851/28851.pdf