Making A Difference

1. Making A Difference Janet Day

2. CNS Tumours • Primary CNS tumours are uncommon. • They account for only 1.6% of cancers in England and Wales. • Affect people of all ages. • Both anatomical position and pathology play an important role in prognosis and treatment decisions.

3. CNS Tumours “In view of the poor survival of many patients, even with optimal treatment, an important aspect of improving outcome is through maximising quality of life” (Improving Outcomes Guidance, 2006).

4. The Issues • Life-threatening • Life-changing • “CNS tumours cause the greatest loss of life of any of the adult tumours, (average 20 per patient)” (Nice Guidelines, 2006).

5. Common Problems • Short presentation • Diagnosis and prognosis • Living with disabilities • Finances • Lifestyle changes • Relationships • Coping • Driving • Side effects of treatments & drugs

6. Altered Body Image • Surgery • Hair • Language • Seizures • Mobility problems • Impaired continence • Sexuality

7. The Role of the Neuro-Oncology Nurse Specialist • Cross care group/division: Neurosciences and Oncology • Point of contact for patients and families from diagnosis • Support, advice and information in person & by telephone. • Liaison between hospital, community and region. • Education and support for healthcare professionals • Counselling for patient and families

8. Referral Criteria • All patients with high grade primary tumours of the central nervous system (approximately 250 per year). • Must be under the care of Regional Neurosurgical or Oncology teams. • Excludes ‘benign’ CNS tumours, paediatrics and cerebral metastases.

9. Multi-disciplinary Team • Physiotherapy • Occupational therapy • Speech and language therapy • Social services • Community nursing • Palliative care • Voluntary organisations

10. Losses • “Also peculiar to the disease is the fact that with each deterioration the patient loses so much, both in the physical and in the cognitive or psychological sense” (Davies, 1997).

11. Case Study: ‘The meaning of loss’ • 18 year old male, acute presentation, diagnosis high grade glioma. • Eldest of six siblings. No contact with father. Living with mother. • Working full time, partner recently pregnant. • Surgery & radiotherapy. • Weight gain with steroids • Visual loss

12. ‘Loss’ • Loss of vision • Loss of earnings • Loss of leisure pursuits • Loss of personal independence • Loss of father role • Loss of ‘status’ amongst friends/society • Loss of ‘identity’ • Loss of ‘future’

13. Case Study ‘Timing’ • 50 year old male, ‘separated’ , four children • Collapsed night before interview • Previous redundancy • Massive debts • Homeless in two weeks • Diagnosis glioblastoma

14. Case Study ‘Timing’ • Support for family (practical & emotional) • Benefits advice • Liasing with creditors • Liasing with housing on behalf of family • Strong personality/lack of insight/advice re medication

15. Case Study ‘More steroids’ • Female, 52 years, married • Surgery outside WNC diagnosis glioblastoma • Moved into area completed RT • Post RT scan stable disease

16. The Problems • Chest infections (steroids increased) • Urine infections (steroids increased) • Seizures (steroids increased) • Reduced mobility (steroids increased) • The Result: numerous steroid related side-effects

17. The Issues • Anxious family/problems coping = numerous hospital admissions • Proximal myopathy • Steroid-induced Diabetes • Recurrent Infection • Thrush • Weight gain ++ • Skin changes

18. The Outcome • Management of Diabetes/other side-effects of steroids • Management of seizures • Surgery for management of cyst • Gradual reduction of steroids

19. Steroids • Dexamethasone is vital to the management of brain tumours • Requirement at presentation/surgery/radiotherapy/at recurrence • Variable dose

20. Side Effects • Hyperglycaemia • Steroid psychosis • Immuno-suppression • Confuse evaluation for infection (antipyretic property) • Prevent/delay wound healing • Proximal myopathy • GI bleeding • Appetite stimulant • Insomnia • Fluid retention

21. Management of steroids • Lowest dose to control symptoms • Reduction in dose if no improvement after trial period • Regular review of steroid dose • Monitor for side effects • Patient education

22. Case Study: Have you met…? • 42 year old female with learning difficulties transferred for neurosurgical procedure • Diagnosis made and decision for no further treatment • Discussions with patient, family and healthcare professionals regarding future care needs • Plan transfer to hospice • Facilitate visit by children

23. Case Study: Have you met…? • Family (estranged father & siblings) • Ex-husband • 3 children • Foster parents • Paediatric & adult social worker • Community occupational therapist • Advocacy services

24. Case Study: Have you met…? Information, communication, support and liaison for :- The Patient The Family The Children The Foster parents The Healthcare professionals

25. “If you can find a path with no obstacles- it probably doesn’t lead anywhere”. (Frank A Clark, 1930)