Neuro Oncology Therapy Update Acute therapy services at Southmead

Current Service Ward based and primarily post-operative Holistic assessment of: Function Physical performance Cognition / communication / mood Physio, OT, SLT, neuropsychology (on request) Anticipate needs on hospital discharge Highlight areas of vulnerability Highlight areas of potential for improvement (could be remedial or compensatory) Identify patient and family awareness of condition, prognosis etc. Inform MDT of assessment outcomes to enable treatment decision making Anticipate needs on hospital – care needs, immediate and whether these are sustainable, how likely to cope with treatment, work issues, financial concerns. Vulnerability – being on their own, impact of fatigue, frontal cognitive symptoms and limited social support (walking wounded), visual impairments. Rehab potential – for all those who have had a resection, anticipate either static function or potential improvement (particularly if presence of swelling or MLS, or if there’s been a haemorrhage). Otherwise there are areas of input that therapists can have that are compensatory and can dramatically increase independence. Family (if there is family present) understanding and education is key to discharge. Often families make a rapid and emotive decision for discharge, however don’t have long term management options in place for care etc. MDT – give an accurate picture of function or how the person is improving on the ward to discuss timeframes for review or oncology appointment booking.

Current Service Therapy treatment: Education for patient and family (e.g. management of cognitive impairment, strategies to manage visual/functional deficits). At present, this education focuses primarily on short term management (immediately post discharge). Onwards referrals and liaison with community services to support discharge planning. Provision of necessary equipment for discharge. Rehabilitation as resource allows. No follow up service. No phone call follow up, therefore for low grade tumours this is particularly difficult. Rehabilitation generally provided for more dependent or vulnerable patients who cannot go directly home.

Current Service SLT pre-operative input: SLT currently assess and prepare people who have been identified as suitable for awake craniotomy including language mapping. There is an identified need for this to be developed across the MDT to facilitate discharge and manage expectations.

Post discharge therapy pathways Patients cover a wide geographical area Inpatient rehabilitation pathways: Challenging for high grade tumours Specialist versus generic Lengthy waiting lists (patients often waiting for weeks for a bed, either locally or in their own DGH) Not always able to access these pathways directly (e.g. Somerset) Lengthy waiting lists causes issues for patients urgently requiring treatment. Case study – haemorrhagic transformation, rapidly improving. Not able to access timely inpatient, intensive rehab. Therefore less likely to be ready for treatment. Intensive rehab at our hospital is not feasible on current resource levels.

Post discharge therapy pathways Community / outpatient services: Highly variable dependent on postcode Often lengthy waiting lists due to resources Consideration of health + social services, charitable organisations that offer services Current example of Bristol / South Glos residents  Discharge to assess (D2A): Pathway 1 (home with support), Pathway 2 (bedded rehabilitation), Pathway 3 (care home), Varied services – some community areas have neuro specific teams (Bath) who will take on tumour patients, however others have neuro teams who do not (Gloucester), others don’t have community neuro services at all (Wiltshire). There are often challenges for neuro oncology patients to access inpatient or outpatient rehabilitation services as there is a lack of understanding of what “rehab” means for this patient group. There can be broad misunderstanding that patients with high grade tumours aren’t suitable for rehabilitation, and there is often reluctance to take patients who are undergoing treatment. Most services set up to achieve certain goals within a short period of time, however do not provide monitoring appointments, education and advice as required (as is appropriate for people with long term neuro conditions). Many local services have been “setup” to provide a service within 48 hours of referral, including care provision. However, this does not happen. E.g. South Glos do D2A which should set up care alongside therapy and respond within 48 hours. If patients require care, they need a separate social work referral. Drain on community services means that patients often staying for longer in the acute setting while waiting for either rehab or care.

Areas of potential improvement: Pre-operative input More intensive resource to enable rehabilitation in the acute setting Post-operative follow up Anticipated benefits: Improved quality of patient journey through pre-op, admission and post-operative care (with consideration of low grade tumours as long term neurological conditions) Reduced length of stay for acute admissions All have recognised the potential benefit of pre-operative input with regards to assessing and supporting symptom management prior to surgery, set up clear expectations for post surgery, build rapport and trust during a difficult emotional time (easier then to re-establish quickly on the ward).

Pilot Proposal: Pre-operative therapy involvement: One session per week of clinical time One session per week of non-clinical time (follow up referrals etc) Involvement of PT, OT, SLT (rotational) Completion of multidisciplinary therapeutic assessment with the option of contacting specific disciplines if specialist concerns highlighted. Patients to be identified by basic screening tool for medics or specialist nurses: Location of tumour indicates likely functional impairment Pre-operative symptoms identified with: Power/sensation Swallow Communication Cognition Complex discharge planning needs identified (e.g. comorbidities, social circumstances) Interview, include a MOCA, include QOL outcome measure. We need to do questionnaire!!

Pilot Proposal: Plan to run for 3 – 6 months (dependent on data collection) Plan to use current screening tool to identify appropriate patients and collect data for relevant patients prior to starting pilot. Data to be collected: Length of stay Satisfaction questionnaire QOL outcome measure (considering FACT-Q) Ultimately the aim would be to complete a business case if pilot demonstrates good outcomes, with the option of expanding the service further. Actions to date: Discussions with community services and agreement for pre-op referrals in Bristol if required Liaison with management regarding clinic space Therapy assessment proformas and screening tools completed. LOS, satisfaction questionnaire E.g. MDT clinic.

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