1. Pre - Treatment Clinic January 2005 to April 2006 Kate Reid, Zoë Neary, Desmond McGuire University Hospital Birmingham NHSFT UK

2. The Reality. Only seeing patients at the extremes of a continuum –Dysphagia/public speakers –Anxiety/++distress –Extreme weight loss-re feeding syndrome. Team members aware of patients but only being referred the very needy.

3. Preparation and Development July 2004 Described a random 10 patients’ pathway Discussed when we should see them and why we wanted to. Discussed with surgical colleagues.

4. The aim of a service Create a service that has meaning to a patient group Offers useful resources to them at different stages of their treatment programme, recovery and follow up

5. The aim of a service Satisfaction with the information given leads to better quality of life and reduced anxiety/depression (Fallowfield et al 1994 British Medical Journal) Vast majority of patients with cancer want specific information, clinicians tend to under estimate the information needed. (Jenkins et al British Journal of Cancer 2001 Patients want information on the impact of the treatment different options available. Inadequate information is associated with increased anxiety and psychological difficulties. (Edwards British J of Max Facs Surgery 1998) How do we make systems flexible to patient diversity whilst they are making decisions? ( Ziegler et al2004 European Journal of cancer care 2004)

6. NICE Guidelines “Careful assessment of each patient’s clinical, nutritional, psychological state is crucial to inform treatment planning. MDT’s should therefore establish multi- disciplinary pre-admission clinics at which all aspects of the case can be considered by appropriate specialists, and members of the MDT can discuss the way forward with individual patients and their carers.” ‘Improving Outcomes in Head and Neck Cancer’ Nice 2004

7. In the Clinic January 2005  Macmillan Clinical Nurse Specialist  Clinical Nurse Specialist – Nutrition  Clinical Nurse Specialist – Altered airway  Dietitian  Speech and Language Therapist  Head and Neck Counsellor

8. What is the clinic for? Involvement in decision making Communication Discuss imagination vs. reality Realistic expectations Information check To build Trust /Familiarity Understand previous experiences Open expression reducing emotional distress Prioritise and pace information for the patient Coping Strategies Promote Personal Control

9. Pre Treatment Clinic Full assessment of all factors that will enhance or undermine the patient and family’s ability to cope with the treatment programme and the disease. High risk screening:- like nutrition & alcohol intake Requires attention to psychological and rehabilitation issues. Formation of intervention strategies to identified needs. Clinical management plan.

10. Bad News Broken Existing concerns confirmed New concerns provoked Distress Gives advice & reassurance Give information Check if person OK

11. Immediate consequences… Person preoccupied with undisclosed concerns Fails to take in information Selectively recalls negative information “we’ll give you radiotherapy to mop up any residual cells” Remains distressed

12. Longer term…. High levels of emotional distress Development of anxiety disorder and depressive illness - high number of undisclosed concerns - perceived inadequacy of information Dissatisfaction with care - perceived inadequacy of information

13. Existing concerns confirmed New concerns provoked Distress Gives advice & reassurance Give information Check if person OK Distress acknowledge concerns expressed Information needs established & prioritised Broken Bad News

14. Attendance over 16 months Seen on the ward. Being referred in from another hospital. Treatment date overtakes pre treatment assessment date. Patient refuses. (5)

15. Questionnaires Used June 2005 Quality of Life general EORTC C30 version3 Bjordal K et al Eur J Cancer. 2000 Quality of Life disease specific EORTC H&N 35 Bjordal K et al Eur J Cancer. 2000 Optimism scale Life Orientation Test Scheier MFet al Health Psychology 1985; The Alcohol use disorders identification test 2nd edition Self Assessment Babor TF et al WHO 2001

16. Hello, my name is England and I’m a drinker

17. Why raise the issue of alcohol “ Every unit which provides diagnostic services for Head and Neck cancer should follow documented guidelines on alcohol dependency assessment and management.” (NICE, 2004) ‘Improving Outcomes In Head and Neck Cancers’ November 2004

19. AUDIT Low RiskHazardous Harmful Dependant Information Leaflet Advice Brief Intervention Advice Community Services Referral Detox Regime Vitamins

20. AUDIT Key __advised re alcohol dependency __discussion re alcohol intake

21. EORTC C30 and HNC35 Key __T1/T2 __T3/T4

22. Key: __HRQOL T1/T2 __T1/T2 QOL__HRQOL T3/T4 __QOL T3/T4

23. Interventions subsequent to clinic Pain management Nutritional support Anxiety management Alcohol Smoking Dysphagia intervention Information Medication Supplements Intervention Intervention/withdrawal Advice and Referral Advice and exercises Contact details

24. What we now know The patient and carers know the teams better, and we are not anonymous Disease stage should not exclude a patient’s referral Timing of pre treatment clinic can be varied according to team and patient need. Assessments are carried out in a systematic way to focus the team on clinical significance. Patients have to be seen as individuals rather than as a statistic. Team builds trust and gives support to patient and one another

25. The Future Maintain 90% seen at pre treatment. What are the outcomes from the pre treatment clinic? How does the intervention effect the patient/carers? How does the information that we obtain alter our management of the patient during their treatment? Does it change lifestyle?

26. “How doctors and nurses communicate can profoundly affect the psychological adjustment and quality of life of cancer patients and relatives” Peter Maguire (1999)

27. Thank You for Listening desmond.mcguire@uhb.nhs.uk