Brain Tumour Scoping project

Transcription

1 Brain Tumour Scoping project Kim Ainsworth, AHP Lead, North London Cancer Network Louise Platt, Therapy Team Lead Neurosurgery, NHNN Sharon Cavanagh, LWBC Lead, Living with and Beyond Cancer

2 Quick overview The background NICE Guidance Recommendations Progress The data The scoping project Method Results Discussion Questions Acknowledgements

3 The challenge: This is a group of patients whose care can be fragmented and uncoordinated, and who may face a lengthy period of physical and cognitive decline following their initial treatment, often without access to appropriate support and rehabilitation. I hope that the recommendations in the guidance will be seen as a constructive way of trying to improve this situation. Forward NICE Guidance 2006 p4

4 The recommendations: Cancer networks should: Nominate lead AHP in neuro-oncology Ensure that rehab specialists available throughout the network Commissioners should: Ensure service provided by network neurooncology team where care by existing neurorehabilitation teams not feasible Work with social services to ensure age appropriate long term placements

5 The checks: Operational policy for neuro-rehabilitation facilities (network level) Area lead for neurorehabilitation (network level) Neuro-rehabilitation facilities (trust level) Core rehab membership of neuroscience and network MDT (trust level) Peer review July 2011

6 The progress AHP neuro-oncology lead Neuro-oncology rehabilitation team Policies and procedures (including core membership)

7 Brain Tumour Unit Reflections on being part of a new service

8 Data

9 Visited sites: Queens Romford UCLH Scoping Method NHNN Queen Square Royal London (inc Barts staff) St Joseph s Hospice Hainault HC (Redbridge community palliative care) NRC Edgware (RFH community neuro rehab) Pre visit questionniare and semi structured interview

10 Patient group under discussion Primary brain tumours managed by the neurosciences/cancer network MDT Significant other concerns for staff: Cerebral lymphoma Brain metasteses Metastatic cord compression

11 The typical patient No such thing Surgical setting at diagnosis tend to be less physically impaired, can be mobile with high level cognitive/behavioural change Sort out re-admissions to oncology wards after end of radiotherapy tend to be much more globally impaired Palliative care additional symptoms of fatigue/breathlessness, can be complex psychosocial needs including children

12 The typical patient continued Often of working age with young people at home Function rapidly variable with disease progression, oncological treatment and steroids Expectations/messages about function & rehab not consistent

13 Numbers of patients seen per year Variable -PT see most inpatients, OT maybe 2/3 and SLT and dietetics maybe 1/3 (related to patient need or historical provision?) Surgery: Romford unit about 350pa, OT see about 240 NHNN unit about pa, dietetics see about 60 Royal London unit?pa, OT see about 84 Radiotherapy: Rarely seen as outpatients For inpatients Barts OT about 24 referrals pa, UCLH dietetics/slt about 12 Community: Referrals episodic, maybe 2-5 per quarter

14 Access to? Multiprofessional team Psychology (neuropsychology testing and counselling psychology) Equipment (for basic care, for postural support)

15 Knowledge and skills Communication skills Managing uncertainty during the diagnostic phase Dealing with distressed, angry, aggressive behaviour in patients and relatives Managing expectations of medical staff as well as patients and relatives Awareness of resources that can be used From extended team From voluntary sector Clinical reasoning in context of tumour diagnosis Appropriate goal setting with teams more used to stable pathology How to change input in preparation for rapid decline Timeliness of discharge planning when poor prognosis expected

16 Knowledge and skills continued Knowing what to expect Understanding whole treatment pathway Symptoms associated with radiotherapy/chemotherapy Risk assessment for behaviour caused by frontal tumours The role of functional assessment in MDT decision making

17 Discussion Variability of individual patient need does that mean unpredictability at a population level? Variability of structure and availability of local service does that mean that what is present cannot be coordinated? Absolute service gaps does that mean problems with service design/workforce, staff education or commissioning/contractual relationships?

18 Way forward under discussion Pilot project to: Connect cancer/non cancer services and NHS/voluntary sector resources together Promote education Develop understanding of population patterns over time Work with commissioners in both cancer and neuro-rehab to define feasible

19 Practical issues to resolve If a new role where would it sit (both physically and in terms of accountability?) Which geographical spread would it serve? What diagnostic groups would be included? When queries require direct clinical assessment and advice from another service, how would this be resourced? What immediate funding might be associated with the project (eg equipment grants)? Would all commissioners recognise the role? How would similar guidance recommendations for psychology be developed?

20 Questions/comments

21 Acknowledgements All the staff who gave up their time to fill questionnaires and meet us North East London Cancer Network