1. Rehabilitation in Lung Cancer Jo Bayly Project Lead AHP Merseyside & Cheshire Cancer Network December 14 th 2009

2. Aim of presentation  Rehabilitation pathway for patients with lung cancer  Commissioning Lung Cancer Rehabilitation  Implications for lung cancer services in MCCN

3. National Context  The Cancer Plan (DH 2008)  Manual for Cancer Services (2008) Rehabilitation measures  End of Life Care Strategy (DH 2008)  Transforming in-patient & community care (2008)  World Class Commissioning  Darzi; High Quality for All (2008)  Cancer Reform Strategy (DH 2007)  NICE IOG Supportive & Palliative Care (2004)

4. Manual for Cancer Services (2008) Rehabilitation Measures:  no. 08-1E-101v: Baseline Mapping of current service provision  no.08- 1E103v: Agreed cancer site specific rehabilitation pathway for patients with lung cancer  no.08-1E-113v: Network service specification for cancer rehabilitation  no.08-1E-114v: Network needs assessment  no.08-1E-115v: Network Service development strategy  no.08-1E-116v: Network cancer rehabilitation training & development strategy

5. National Cancer & Palliative Care Rehabilitation Workforce Project:  Commenced November 2007  Jointly funded by DH & Cancer Action Team  Focus on rehabilitation services provided by AHP’s: Physiotherapists Occupational Therapists Dietitians Speech & Language Therapists

6. National Cancer & Palliative Care Rehabilitation Workforce Project: Deliverables: updated tumour specific evidence base published tumour specific rehabilitation pathways quantify level of cancer rehabilitation required: wte per cancer site population provide workforce data to support network cancer populations

7. Why do we need a lung cancer rehabilitation pathway?  Effectiveness of rehabilitation services in other conditions is well established i.e. stroke, cardiac & pulmonary care  Increased recognition of need for rehabilitation in cancer care (Supportive & Palliative Care IOG ch10 / Cancer Reform Strategy ch5 / National Cancer Survivorship Initiative)

8. Why do we need a lung cancer rehabilitation pathway?  cancer & its treatments impact on patients physical, psychological, social & functional well-being  helps patients maximise the benefits of their cancer treatment  minimise deconditioning/loss of function  Adaptation of ADL and routines to new needs and limitations  improve social condition, quality of life

9. Why do we need a lung cancer rehabilitation pathway?  evidence based interventions available  non-pharmacological symptom control Multi-professional breathlessness management (Lung Cancer Clinical Guideline 24)  supports recovery of skills, return to previous work/ roles  cost effective: reduce utilisation of other healthcare resources, decrease hospital length of stay and hospital admissions

10. Patients with Lung Cancer may experience the following at any point on the pathway:  Breathing difficulties/cough  Fatigue/tiredness  ↓ mobility/exercise tolerance/weakness  Pain  Cachexia/weight loss  ↓ Appetite  Dysphagia  Difficulties with ADL/leisure/work  Specific functional impairment  Equipment needs  Anxiety/stress  Communication difficulties  Specific Information needs

11. Rehabilitation pathway referral triggers: Problem/need:Refer to: Breathing difficulties/coughPhysio/OT Fatigue/tirednessPhysio/OT/Dietitian ↓ mobility/exercise tolerance/weakness Physio/OT PainPhysio/OT/Dietitian DysphagiaSLT/Dietitian Cachexia/weight loss/ ↓appetite Dietitian/ Physiotherapy

12. Rehabilitation pathway referral triggers: Problem/need:Refer to: Specific Information needsPhysio/OT/SLT/ Dietitian Difficulties with ADL/leisure/work OT/Physio Specific functional impairment OT/Physio Equipment needsOT/Physio Anxiety/stress OT Communication difficulties SLT

13. Diagnosis Monitoring Survivorship Palliative Care End of Life Post treatment Treatment Rehabilitation in Lung Cancer Maintain exercise tolerance/ function Nutritional support Breathlessness/pain/fatigue management Maintain exercise tolerance/ function Nutritional support Breathlessness/pain/fatigue management Maximise functional independence Nutritional support Advanced care planning Maintain exercise tolerance/function Vocational rehabilitation Maintain exercise tolerance/ function Nutritional support Breathlessness/pain/fatigue management Advanced care planning Equipment provision Non-pharmacological symptom management

14. How are rehabilitation needs of Lung Cancer patients identified in MCCN?  No formal assessment tool currently in place  Medical/CNS led clinics  District Nurses/Community CNS  Currently, rehab services mostly in hospices  Rehab needs may be present before symptoms prompt referral to hospice

15. Rehabilitation Services for patients with lung cancer in MCCN.  Most in-patient & community rehabilitation provided by generic AHP’s  Little planned/ funded specialist cancer rehabilitation outside specialist trusts, hospice & palliative care services  Gaps in service for ambulant patients who are not referred to palliative care  Some generic staff have post graduate training in oncology & palliative care

16. Funded specialist rehabilitation services for patients with lung cancer in MCCN Acute Trust PCTSpecialist Trust Hospice Physio01.5 (pall care) 1.77.36 OT02.15 (pall care) 2.78.67 Dietitian21 (pall care) 40 SLT01 (vacant, pall care) 0.40

17. Challenges:  Despite improvements in treatment outcomes for lung cancer patients relatively little increase in rehabilitation support to mitigate functional loss no evidence of rehabilitation services being specifically commissioned as part of the cancer care package.

18. Challenges for commissioners and providers in MCCN:  rehabilitation not strongly articulated in commissioning process cancer pathways medically focused rehabilitation not described in Lung Cancer IOG lack of understanding of the broad nature of cancer rehabilitation interventions

19. Challenges for commissioners and providers in MCCN: cancer- a ‘long term condition’, ‘end of life care’ or both? variable models of service delivery performance monitoring, quality metrics, KPI’s and outcome measures funding priorities  NCAT Commissioning Framework for rehabilitation services

20. High quality cancer rehabilitation in MCCN needs to be:  Timely & responsive  Generic & specialist AHP’s are accessible  Seamless across service boundaries  Delivered in appropriate setting  Focus on prevention & management of long term effects

21. Network Lead AHP & Rehabilitation Group responsibilities:  Consult with local AHP providers, Lung CNG, Lung CNS & Partnership Group  Facilitate local implementation of lung cancer pathway Clear referral guidance and processes Directory of Cancer Rehabilitation Services Patient Information Leaflets New developments i.e. MPT follow up clinics Education & Training Audit

22. Thank you  http://www.cancer.nhs.uk/rehabilitation /index.htm http://www.cancer.nhs.uk/rehabilitation /index.htm  Jo Bayly joanne.bayly@aintree.nhs.uk 0151 529 2299