brain and spine cancer · 3 in our role as a neurosciences specialist centre we see brain and spine...

Brain and spine cancer Application template

Trust

BHRUT

Clinical lead

Mr Seb Bavetta

Managerial lead

Cass O’Reilly

Date completed

11th July 2013

Applying to provide

Local brain and spine unit Yes Specialist neuro-oncology centre* Yes

*Trusts hosting specialist centres will also host a local unit

Proposed sites

Local Brain and Spine unit Queen’s Hospital, Romford

Specialist Neuro-Oncology Centre Queen’s Hospital, Romford

Vision for future Brain and Spine Cancer Services

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Please outline your organisation’s broad vision for the delivery of brain and spine cancer services.

Cancer Services at BHRUT

Serving a local population of 750,000 in the North East area of London alone, BHRUT sees 10% of all London cancer cases from all

tumour groups. The 2 main hospital sites; Queen’s Hospital in Romford and King George Hospital in Goodmayes, have state of the

art facilities to enable diagnosis, treatment and support for cancer patients. BHRUT provides a comprehensive oncology service

which is fully staffed and hosted in a modern building built in 2006. As well as a full range of sub-specialist cancer services, there is

also the Acute Oncology Service supported by a newly refurbished cancer day centre, a dedicated oncology ward with ring-fenced

beds and full diagnostic and therapeutic capability. There is a thriving palliative care team with strong leadership and is extending

its service to provide on-site care 7 days a week. The facilities are described in greater detail in the response to the specification

that follows.

There are excellent public travel links within North and North East London and within Essex and these also serve the more rural

communities well affording easy access to the oncology centre. Where needed, there are dedicated parking facilities for cancer

patients and carers (94 free spaces and a further 65 free disabled spaces). In addition to this, there are almost 800 parking spaces

for patients and visitors.

BHRUT has consistently achieved excellent peer reviews in many tumour groups including brain and spine. There are regular cancer

away days to modernise and develop cancer services, both Trust wide and for specific tumours. Excellent links exist with primary

care and the newly formed CCGs to provide integrated care and consistently fast access for suspected cancer cases. There is a

strong tradition of working with patient groups to shape services and a cancer patient group that has been meeting monthly for

many years.

Neuro-oncology at BHRUT

The current Neurosciences Centre for Outer North East London and Essex serves a population of 2.4 million. We aim to provide the highest quality care possible for all patients referred to our services with suspected or confirmed brain and/or spine tumours along all parts of their pathway, both from our local population and in our role as a specialist centre. We believe that our care is of the highest quality and is cost effective. This view is supported by our recent Peer Review report (undertaken in November 2012) in which the Multi-disciplinary Team obtained a very favourable score compared with other Neurosciences centres in London (St Georges: 93.8%. BHRUT: 86.7%, Imperial: 80%, UCLH: 76.7%, Kings 53.3% and BLT 51.5%).

The Neurosciences team believes care closer to patients' homes is of the utmost importance and discussions with stakeholders

have supported this. Travel to a more distant centre is acceptable only when there is a good clinical reason for it. We believe that

patient pathways should be delivered as locally as possible to ensure continuity of care and satisfaction for our patients and their

carers.

The Neurosciences service is staffed with 8 Consultant Neurosurgeons, 2 Brain and Cancer Clinical Nurse Specialists, 6 Consultant

Specialist Neuro-intensivists, 2 Consultant Neuro-Oncologists, 6 Consultant Neuro-Radiologists, 6 Consultant Neurologists, 3 Clinical

Neuropsychologists and 2 Consultant Neurophysiologists supported by 4 qualified technicians. All of these are well supported by a

team of junior doctors providing excellent training opportunities. Within Neurosurgery expansion has taken place over the years. As

a result, there has been increasing sub-specialisation and in the future neuro-oncology will be provided by neurosurgeons who will

dedicate over 50% of their clinical time to patients with Central Nervous System tumours in line with national guidance.

There is a full complement of therapists including an Extended Scope Physiotherapist. There are 2 modern dedicated theatres for

neurosurgery available 7 days per week if necessary and running up to 23 theatre sessions per week for elective and emergency

patients. Emergency patients can be admitted 24/7 via the on-call neurosurgical registrar either to our Neuro ITU/HDU, which is a

12-bedded dedicated facility staffed by 6 Consultant Specialist Neuro-intensivists or to our 30-bedded Neurosurgical ward which

includes an 8- bedded higher dependency bay. Furthermore, the ward has a mixture of bays and side rooms ensuring the

maintenance of single sex accommodation and patient dignity. All senior nursing staff working on both Neuro ITU and

Neurosurgery have a Neurosciences qualification and junior staff are supported by a Neuroscience rotation enabling them to

acquire specialist skills to care for this patient group. Junior staff can undertake the Neurosciences Course which is formally

accredited by Southbank University. The 2 Clinical Nurse Specialists for Brain and Spine Cancer are the pivotal link for our cancer

patients ensuring smooth access to and from our service and seamless care through all stages of the pathway. The service also acts

as the Metastatic Spinal Cord Compression (MSCC) unit for Essex. The Neurosciences Centre at BHRUT is about to host the National

Society of British Neurological Surgeons meeting in September 2013.

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In our role as a Neurosciences Specialist Centre we see brain and spine cancer cases arising in both our local population and from

an additional 1.70 million people in Essex, (the population of which is growing at over twice the national average). In 2004, there

was a major review of Neurosurgical services commissioned by the Essex Regional Health Authority resulting in an agreement that

BHRUT would take 95% of all Neurosurgical emergencies. We work closely with the 5 major acute hospitals in Essex via weekly

video-linked MDMs and pride ourselves on our excellent relationships with the lead clinicians in these hospitals as well as with

other important providers of care and support to patients such as the St Francis Hospice and a range of Community services. These

stakeholders will be happy to provide testimonials on request.

Our vision for the future is of an expanded service as one of two thriving units which would collaborate to provide high quality, cost-effective specialist neuro-oncology care including pituitary, skull base and spine to the population of North London and Essex.

BHRUHT Peer Review Operational Policy Neurosciences FINAL (17 10 12).doc

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Have you secured trust board-level approval for your application? (please give details)

Yes. Presentation of the bid was made to the Trust Executive committee on 9th July 2013.

The Board fully support the bid.

Have you discussed your proposals with other trusts and/or local GPs? (If so, please give details)

We have discussed our proposal with our partnership hospitals in Essex and with our local CCG leads.

Have you discussed your proposals with any other relevant stakeholders? (If so, please give details)

Yes. We have discussed with the Essex Hospitals who support our application. Testimonials are available on request. We have also discussed with our support group and St Francis Hospice. Brain Tumour UK have been involved.

Internal stakeholders have been involved including: Nursing Directorate, Diagnostic Services (Radiology, Pathology and Endoscopy), Theatre, Anaesthetic and Critical care, Allied Health Professionals, the Acute Oncology Service and Palliative Care services.

Brain Tumour UK have been involved.

Outline of proposed local brain and spine cancer unit

N.B. The high-level summary in the column below provides an overview of the main features addressed by the pathway specification at each pathway stage. Please consult the pathway specification document for a more detailed description.

Part of pathway High-level summary of specification Proposal Developments necessary

Presentation All hospitals have a named lead for brain and spine tumours and a clear referral pathway to neuro-oncology centre for suspected tumours

Inter-trust referrals include clinical information, the original scan, and a named point of contact at the referring unit

Local imaging for suspected brain and spine cancer carried out to agreed London Cancer protocol to avoid repeat imaging where possible

BHRUT’s clinical lead for brain and spine tumours is Mr Seb Bavetta, Consultant Neurosurgeon who has been very proactive in developing and maintaining excellent relationships with our local referring Trusts. He is Co-Chair of the Essex Cancer Network NSCG.

The responsibilities of the Lead Clinician are outlined in our Operational policy and include: • leading the clinical activity of the MDT and ensuring that the practice is in accordance with network and national guidelines • ensuring that the MDT engages with the network site specific group (NSSG) and contributes to its work • ensuring all healthcare professionals understand their personal responsibilities to work with the published standards

A full description of his leadership role and duties is contained in our Operational Policy attached.

A clear referral pathway exists to neuro-oncology from all sub-specialtiess. Our aim is that all cases are discussed at the MDT

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meetings. Cases are compiled by the MDT coordinator and circulated to all members in advance. The list is generated from theatre lists, pathology etc. by MDT members. All members are responsible for notifying the MDT coordinator of patients to be added to the list.

Cases are usually presented at the MDT meetings by the neurosurgery registrar/neurosurgical consultant who knows the patient and slides carrying appropriate information are prepared to ensure all important relevant information can be readily accessed. Imaging and histology are reviewed and a management plan agreed. This is documented on the proforma which is filed in the BHRUT patient’s notes and faxed to the referring team for patients transferred back to their local hospital or their GP for those discharged home. It is agreed at the MDT how the patient will be informed and by whom.

For patients at home this is usually a request for them to attend for a results clinic. Their results are then discussed with them by the neurosurgical doctor and the neuro-oncology nurse specialist.

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Named lead consultants at the referring units have been identified for all local Trusts in Essex as follows:

Dr Madhaven, Southend

Dr H Algurafi, Basildon

Dr Lamont, Colchester

Dr Srinivasan, Broomfield

Dr G Read, Princess Alexander, Harlow

A description of their roles in cancer provision is outlined in the operational policy.

The Trust complies with the London Cancer protocol for local imaging of suspected brain and spine cancer and has on-site imaging services available 24/7. We have consistently met the targets for urgent suspected cancers with performance of:

99.21% 31-day target for brain and spine cancers 2012/13

97.23% 2 week access target (for all cancers within the Trust including brain and spine)2012/13

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Chemotherapy Delivered only by oncologists with a specialist interest in neuro-oncology

Treatment follows recommendation of the MDT and agreed London Cancer guidelines

Chemotherapy for Brain and spine cancer patients is delivered by (and only by) our oncologists with a special interest in neuro-oncology.

All treatment follows recommendations of the MDT, held weekly and adheres to London Cancer guidelines as confirmed by our recent Cancer Peer Review (November 2012).

Chemotherapy services at BHRUT

BHRUT’s catchment area for general cancer services is 750,000 with additional patients being referred from the Brentwood area in Essex for local treatment. Chemotherapy is delivered from BHRUT’s 2 main hospital sites: Queen’s Hospital and King George Hospital (KGH). Both sites have purpose built centres with a recently refurbished centre at Queen’s hosting 30 chairs and 6 beds. The chemotherapy day unit is located adjacent to all other cancer services within the Trust and has its own dedicated entrance for patients and carers with a large car park to the front of the centre. The centre allows for emergency admissions for chemotherapy patients as well as planned

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procedures and admission for those poorly from their chemotherapy. The centre is open from 9 am to 7.30 pm 5 days per week and is planned to move to 7 day opening by 2014. Patients requiring emergency admissions for metastatic brain and spine cancer can be admitted via the service within opening hours or via the Neurosurgical Registrar on-call 24/7. Patients with primary brain or spine cancers access emergency admission via the Neurosurgical Registrar on-call. Supportive care is also provided from both sites (blood transfusions, platelets, venus sections, planned care such as hickman line insertions, biopsies, bone marrow biopsies, ascetic drains, picc line insertion (nurse led) with ultrasound-guided picc line insertion due to be in place by October 2013. There are 13 qualified nursing staff and 1 HCA who work across both of the BHRUT chemotherapy sites as well as a matron and lead chemotherapy nurse. Medical cover is provided via an SHO for the day unit and an SPR with 24/7 access to a Consultant Oncologist and Haematologist out of hours. There is junior doctor on-site cover at weekends during the day. Located within the cancer centre is also a

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complimentary therapy unit staffed by a BHRUT employee and volunteers offering massage, reflexology and aromatherapy for patients and their carers. Appointments are available daily. Access to chemotherapy is decided by the multi-disciplinary team at the MDT and is based on clinical need. If required, patients can access their chemotherapy straight away. The Cedar Centre at King George Hospital has 20 chairs and offers Chemotherapy and Supportive Care as outlined above with the centre opening from Tuesday to Friday, 9 am to 5pm.

There is an excellent Acute Oncology Service (AOS) within BHRUT, supported by the clinicians and 3 dedicated AOS Nurses, all of which work an 8am – 8pm rota. This is set to become a 7 day a week service with the recruitment underway of 2 further nurses.

The chemotherapy day unit provides acute assessment beds in order to support the AOS. This unit has recently been extended and refurbished and the service has been nominated for a national award run by the NURSING TIMES for developing an outstanding oncology service.

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There are 8 consultants of which there is one dedicated AOS lead. All consultants have dedicated time in their job plans. Administrative support for this service is in place. This service was assessed in November 2012 achieved good compliance with peer review standards For a newly formed service.

All patients attending A&E are flagged by the A&E staff to the AOS service. The Trust is currently looking at extending the use of the A&E Symphony system to introduce an electronic flag.

During working hours patients are seen in the assessment beds within the chemotherapy day unit to avoid any unnecessary waits in A&E. There are also ring-fenced beds within the specialist oncology ward for out of hours admissions. There are excellent links with the neuro-oncology team and Palliative Care service. Contact details of all neuro-oncology staff are available in the emergency department. The neuro-oncology clinicians can directly refer to the AOS and palliative care service.

The AOS is also in the process of developing inpatient beds into a 24/7 assessment unit so

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that acute oncology patients do not have to attend A&E and can be fast tracked straight to the Oncology ward for assessment.

An AOS operational policy which includes policies for managing oncological emergencies is available on the Trust intranet. Printed copies are available in A&E. These describe protocols on the management of patients presenting as emergencies.

Pathways and protocols also exist for the management of patients presenting as emergencies as a consequence of non-surgical treatment i.e. neutropenic sepsis, treatment related pain and dehydration. An annual audit of neutropenic sepsis is carried out. The protocol requires the notification of the AOS when a cancer patient presents and is admitted as an oncological emergency. Within usual working hours, the CNS is the first point of contact and the on call member of the AOS is contacted out of hours. The CNS ensures that a holistic needs assessment is completed and referral made to the appropriate specialist.

Clear guidelines are in place in A&E on the management of neutropenic sepsis and metastatic spinal cord compression. A patient

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Passport System has been in situ for some time within the Trust for those who are undergoing or have undergone treatments within the last 6 weeks.

Follow-up Follow-up of brain and spine tumour patients managed by an experienced team trained and supported by the neuro-oncology centre

Performs surveillance imaging as determined by the MDT

Follow-up imaging adheres to London Cancer protocols and unexpected findings are reported to the neuro-oncology centre along with the images

Local teams inform neuro-oncology centre when patients die in hospital

All follow-up of brain and spine tumour patients is managed by an experienced team who are supported and managed by the neuro-oncology team.

All imaging is performed in accordance with agreement at MDT.

Unexpected findings are reported to the neuro-oncology centre along with the images

The neuro-oncology centre is informed when patients die in hospital.

Imaging & Investigation

Patients present in a variety of ways. Patients are referred by their general practitioner (GP) to one of a number of specialties including Neurology, acute services (such as Acute Medicine, Ophthalmology,

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Endocrinology, Radiology or Orthopaedics).

The establishment of an accurate diagnosis to inform management decisions is a key element in the care pathway for patients with brain and other central nervous system (CNS) tumours. This usually involves neuro-radiological imaging and histopathological evaluation following biopsy or tumour resection. Other laboratory tests, such as for germ cell tumour markers, occasionally have a role in specific situations. Molecular analysis will increasingly be used alongside histopathological evaluation to characterise CNS tumours, providing information about prognosis and therapeutic response, and thereby facilitating patient stratification. First-line investigations, including imaging, are usually carried out at the local hospital. Radiological imaging (computed tomography [CT] or magnetic resonance imaging [MRI], is essential in the diagnosis of CNS tumours, and it is the first point at which a suspected diagnosis of a CNS tumour is made that prompts entry into the Queens Hospital MDT. Neuro-radiological imaging is central to the

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diagnostic process because this is when the diagnosis of a tumour is raised or confirmed. Radiology departments are in a unique position to identify the majority of patients with potential CNS tumours. Despite this, there will continue to be a significant number of patients who present with advanced disease as an emergency. All core MDT neuro- radiologists have 50% of their direct clinical care programmed activities specified for the practice of neuroradiology.

Neuro-rehabilitation

Neuro-oncology centres and local cancer units ensure neuro-rehabilitation assessment and provision available at key points in line with national, evidence-based rehabilitation pathways:

Provision of clinical psychology to address identified patient needs

The Trust ensures that patients for neuro-rehabilitation are assessed as appropriate for neuro-rehabilitation services and the neurosciences centre fully meets the National Cancer Action Team (NCAT) criteria for presentation of suspected or confirmed spinal cord compression; unstable spine after treatment, discharge, post- hospital discharge and approaching end of life.

BHRUT proposes the provision of neuro-rehab services for its patients and would be willing to provide level 1 or 2 neuro-rehab services

Access to neuro-rehabilitation services was indentified as a weakness in our latest Peer Review.

The Trust proposes the development of Neuro-rehabilitation services and is happy to work with commissioners to provide these locally.

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which will include rehabilitation for patients with brain and/or spine cancer

The neuropsychological impact of brain tumours has been well described. Individuals affected by brain tumours and their families/carers often have the challenge of coping with a diagnosis as well as changes in memory and other aspects of cognition, emotion and behaviour. Our services within the Neurosciences Centre at Queen’s Hospital have Clinical Neuropsychologists who offer comprehensive neuropsychological assessments in order to establish the effects of a tumour and/or treatment and to provide advice to patients/families or recommendations for ongoing care needs.

The Trust has an in-house clinical psychology team with a Consultant Clinical Psychologist and a band 8b Clinical Psychologist and is currently recruiting to a third Clinical Psychology post.

Supportive and palliative care

Centres and local units have clear referral pathways for patients with palliative and specialist palliative care needs

Clear referral guidance for management of end of life care and complex symptom control, including management of physical disability

The Trust has end of life support in place with patients accessing the Liverpool Care Pathway where appropriate and symptom control is achieved with the support of the Acute Oncology team, Palliative Care team and the Acute Pain team. District Nurses within the primary care setting also support the

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GP and palliative care team to manage patient as appropriate

discharge of patients. Referral forms are available to all staff and GPs have direct access to palliative care telephone numbers. Protocols are available on the Trust Internet for the management of end of life care and complex symptom control.

There are two full- time and one part-time consultant, supported by 7 CNS posts, dedicated to palliative care. There is a 24/7 palliative care consultant service available. This service provides and advises on complex symptom control and will shortly deliver a programme to extend cover at weekends.

There is clear referral guidance available in the Trust for management of end of life and all internal referrals are seen urgently within 24 hours.

The Specialist Palliative Care team is linked with the community services, St Francis or St Joseph’s Hospice for care in community. A triage telephone service is available at the hospice for advice from the oncology community team.

Patients have direct access to this service and can also access the CNS in hours or the

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oncology ward out of hours.

The Palliative Care MDT is fully established. There are domiciliary visits and there is cross-working and provision of on-call palliative care services with St Francis Hospice

Holistic Care All patients will be individually assessed to ascertain their individual holistic needs. As their needs are identified, appropriate referrals will be made in order to facilitate the patient’s care pathway, where possible. Non-English speaking patients, and those with other communication difficulties, will be provided with interpretation and translation support at all points of their clinical care. This service is managed through the PALS office via a central booking system. An external contract is in place for provision of interpreting services for patients. This is available either through a telephone based service, or via a face-to-face interpreter. The British Sign Language Interpreting service for deaf patients is also available through the contract with Newham Language Shop. The Trust also has a communication system for patients who are deaf and blind.

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The Trust has a Chaplaincy team, with access to a range of local faith leaders, so that patients and relatives are able to access the support they require. Patients can be referred to Chaplaincy at any time. Assessment will be wide ranging focusing on what is important to the patient. The Chaplain will endeavour to assist the patient or carer. All Chaplains are able to offer informal counselling support. This team also includes a qualified counsellor. The Chaplaincy team offers a 24-hour generic emergency on-call service. The team are supported by 40 trained volunteers across both sites, with links to local faith leaders as required. This service will be available to patients, carers and staff who are provided with the relevant contact numbers for all hours.

The Trust is currently part of the Macmillan electronic health needs assessment (EHNA) project. All patients will have access to an EHNA questionnaire. The EHNA can be recorded on the Somerset database. Based in the Trust’s Macmillan Information Department all cancer patients can access complimentary therapies offering aromatherapy, reflexology and massage, all

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free of charge.

All patients will continue to undergo holistic assessment at diagnosis and throughout their pathway, supported by the specialists in cancer rehabilitation such as specialist Physiotherapy (PT), Occupational Therapy (OT), Speech and Language Therapy (SLT) and on-site Palliative Care team.

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Outline of proposed neuro-oncology centre


Part of pathway High-level summary of specification

Proposal Developments necessary

Neuro-oncology centres

All diagnosis and management of brain and spine tumours takes place in designated neuro-oncology centres

London Cancer will have 2 designated neuro-oncology centres, 1 for inner London and 1 for outer London and Essex, each serving a population of at least 2 million

London Cancer centres have links to neuro-oncology centres in neighbouring areas

All diagnosis and management of brain and spine tumours for patients referred to BHRUT from Essex and Outer North East London takes place at BHRUT which serves a population of 2.4 million.

We aim to provide the highest quality care possible for all patients referred to our services with suspected or confirmed brain and/or spine tumours along all parts of their pathway, both from our local population and in our role as a specialist centre. We believe that our care is of the highest quality and is cost effective. This view is supported by our recent Peer Review report (undertaken in November 2012) in which the Multi-disciplinary Team obtained a very favourable score compared with other Neurosciences centres in London (St Georges: 93.8%. BHRUT: 86.7%, Imperial: 80%, UCLH: 76.7%, Kings 53.3% and BLT 51.5%).

The Neurosciences team believes care closer to patients' homes is of the utmost

importance and discussions with stakeholders have supported this. Travel to a more

distant centre is acceptable only when there is a good clinical reason for it. We

believe that patient pathways should be delivered as locally as possible to ensure

continuity of care and satisfaction for our patients and their carers.

The Neurosciences service is staffed with 8 Consultant Neurosurgeons, 2 Brain and

Cancer Clinical Nurse Specialists, 6 Consultant Specialist Neuro-intensivists, 2

Consultant Neuro-Oncologists, 6 Consultant Neuro-Radiologists, 6 Consultant

Neurologists, 3 Clinical Neuropsychologists and 2 Consultant Neurophysiologists

supported by 4 qualified technicians. All of these are well supported by a team of

junior doctors providing excellent training opportunities. Within Neurosurgery

expansion has taken place over the years. As a result, there has been increasing sub-

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specialisation and in the future Neuro-oncology will be provided by Neurosurgeons

who will dedicate over 50% of their clinical time to patients with Central Nervous

System tumours in line with national guidance.

There is a full complement of therapists including an Extended Scope

Physiotherapist. There are 2 modern dedicated theatres for Neurosurgery available

7 days per week if necessary and running up 23 theatre sessions per week for

elective and emergency patients. Emergency patients can be admitted 24/7 via the

on-call Neurosurgical registrar either to our Neuro ITU/HDU, which is a 12-bedded

dedicated facility staffed by 6 Consultant Specialist Neuro-intensivists or to our 30-

bedded Neurosurgical ward which includes an 8-bedded higher dependency bay.

Furthermore, the ward has a mixture of bays and side rooms ensuring the

maintenance of single sex accommodation and patient dignity. All senior nursing

staff working on both Neuro ITU and Neurosurgery have a Neurosciences

qualification and junior staff are supported by a Neuroscience rotation enabling

them to acquire specialist skills to care for this patient group. Junior staff can

undertake the Neurosciences Course which is formally accredited by Southbank

University. The 2 Clinical Nurse Specialists for Brain and Spine Cancer are the pivotal

link for our cancer patients ensuring smooth access to and from our service and

seamless care through all stages of the pathway. The service also acts as the

Metastatic Spinal Cord Compression (MSCC) unit for Essex. The Neurosciences

Centre at BHRUT is about to host the National Society of British Neurological

Surgeons meeting in September 2013.

As part of the London Cancer Forum we meet regularly with clinicians from UCL and BLT. We also participate in the Gamma Knife MDT.

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Multidisciplinary team

Neuro-oncology centres have a neuroscience MDT with responsibility for the management of adult patients with brain and spine tumours

Neuro-oncology centres host subspecialist MDTs for pituitary, skull base, and spinal for patients who would benefit, but these do not necessarily exist at each centre

‘Cancer supportive care’ MDT in place at each neuro-oncology centre to implement the non-surgical elements of the management plan

The lead for the CNS cancers MDT are as follow: Neurosciences MDT; Mr Seb Bavetta, meets weekly Pituitary MDT: Mr John Benjamin, meets weekly Skull Base MDT: Mr Jonathan Pollock, meets monthly Spine MDT: Mr Karoly David, meets weekly Supportive Care MDT: Ms Kim Paskins, meets fortnightly We also participate in the Gamma Knife MDM which is run by BLT via a video link, this meets fortnightly. We comply fully with the membership requirements as outlined in the specification. Further membership details and function of the Multi-Disciplinary Meeting (MDM) is outlined in the MDM section below and more detail is provided in the Operational Policy embedded in this document above. A Supportive Care Neuro-oncology Cancer Network MDT has been developed for local BHRUT patients in collaboration with the Essex Cancer Network MDT. This needs further development over the coming year.

Timeliness of assessment and treatment

Neuro-oncology centres have capacity to assess and treat patients with minimum delay and process in place to

BHRUT consistently meets all of its waiting time targets for patients with suspected brain and spine cancer and monitors its compliance with 2 weeks access, treatment within 62 days of referral and within 31 days of diagnosis monthly via its Neurosciences Performance Monitoring mechanism as well as at Trust Board level.

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monitor and report on waiting times

Malignant tumour patients assessed and treated within at least 62 days of urgent referral and 31 days of diagnosis

62-day Cancer Target Performance for Brain and Spine cancers over the past 3 years was as follow:

2011/12 – 100% 2012/13 – 100% 2013/14 YTD – 100% Our 31-day and 2ww targets for all tumour sites are as follows: 31-day 2012/13 – 99.21% 2ww 2012/13 – 97.23%

Clinical nurse specialist service

Neuro-oncology centres have a team of clinical nurse specialists who perform the functions outlined in the pathway specification

The Trust employs 2 Clinical Nurse Specialists who perform the functions to support the pathway specification. Their role is outlined in detail in the Operational Policy and they form a key pivotal role in management of patients with brain and spine cancers.

The CNSs have received training in holistic assessment to required standards. The CNSs undertake a significant part in the cancer pathway and are already present at the time of cancer diagnosis to provide support to the patient and to the clinician, when treatment options are being discussed. Furthermore, they ensure that the appropriate written information is provided to the patient, including the use of Information Prescriptions. Our CNSs are piloting the eHNA (electronic Health Needs Assessment) in collaboration with Macmillan. One of our Clinical Nurse Specialists is level 2 trained in psychology and the other is working towards this qualification having been more recently recruited.

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There is an agreed communications protocol in place between the clinician and CNS to ensure timely follow-up. The CNS’s function as the patient’s key worker who also share key information freely with the specialist surgical centre or other providers delivering elements of the care pathway. Access provided to a key worker All new patients are allocated a CNS at the time of diagnosis and at subsequent appointments or admission to the dedicated ward. This is supported by a key worker policy. The CNS is present at MDT meetings. The CNS works as the patient’s key worker and details are shared with the patient during the first clinic appointment. Full written information is provided to the patient about tumour type and treatment options. The CNS undertakes a significant role in the cancer pathway and is present at the time of cancer diagnosis to provide support to both the patient and the clinician when treatment options and the next steps are being discussed. The CNS contacts the patient to arrange a suitable time and is present at the consultation. Furthermore, the CNS ensures that the appropriate written information is provided to the patient, including the use of Information Prescriptions. BHRUT also proposes that a CNS network is established between the specialist centres and local providers to support onward referral and ensure that patients have access to Key Workers who are aware of their diagnosis at all times.

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Diagnostic imaging

Neuro-oncology centres have rapid access to the necessary diagnostic capacity to assess patients with suspected brain and spine tumours, including advanced MRI techniques, PET-CT and PET-MRI

BHRUT has rapid access to diagnostic capacity for assessing patients with suspected brain and spine tumours utilising occasionally on-site MRI and PET- CT or PET-MR at the inner London hospital sites. The Trust plans include provision of a PET scan on the Queens Hospital site.

Diagnostic facilities at BHRUT

There is a choice of diagnostic facilities and patients will have access to a full suite of diagnostic services provided by BHRUT. This will include state of the art radiology facilities providing MRI and CT scanning available at both Queen’s Hospital and King George Hospital. MRI and Cerebral DSA are available at the Queen’s Hospital site. The key features of the Trust’s Diagnostic Services are: • Patient centred, patient sensitive • Responsive to the patient needs and where these can be delivered • Hot reporting on images with fast turnaround • Routine Pathology tests within 4 hours • Urgent Pathology results with 60 minutes • OrderComms in place for Pathology and being implemented for Radiology (October 2013) • Compliance with Royal College of Radiologists and Royal College of Pathologists Guidelines. Radiology operate in accordance with the Royal College of Radiologists guidelines and IR(ME)R regulations • MDT assessed competencies All required reporting is undertaken by qualified and experienced consultants, clinical scientists or radiographers as appropriate who are registered with nationally recognised professional bodies.

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The competency of reporters and staff is assessed and reviewed: Radiology: Competencies are assessed and reviewed via a number of Peer meetings including: • Clinical Governance • Quality and Safety • Morbidity and Mortality • Clinical Leads • Section Heads • Radiation Supervisors • Radiation Protection Committee • Clinical Audit • Clinical Discrepancies

For patients with suspected metastatic disease: In order to secure an early diagnosis an urgent CT scan is requested as soon as cancer is suspected. Access to CT scans for patients when they leave their appointment with a high suspicion of cancer can be provided by radiology. There is capacity for the CT scan to take place within one week following the appointment. If there is a clinical need for the patient to be seen sooner, this can be accommodated.

There are six Consultant Neuro-Radiologists in place who have overall responsibility for the imaging service provided to brain and spine cancer patients. The ultrasound studies are reported by Radiologists with a specialist interest in the field. There is protected time in job plans for preparation and attendance at MDT.

The Trust delivers timely imaging investigations and reports in order to meet the nationally set target for the commencement of definitive treatment within 31 days of the decision to treat. If the patient is on the 2ww pathway this takes place within

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62 days of urgent referral and patients will access one-stop clinics where appropriate.

All brain and spine cancer patients have timely access to plain X-ray, USS, CT, MRI and facilities locally.

MDT meeting All new patients discussed if possible at neuroscience MDT or subspecialist MDT meeting prior to surgery (not possible in some emergency cases)

Each patient considered for potential entry into clinical trials

Written summary of the proposed management plan produced by the MDT and sent to referring clinician, cancer supportive care MDT and GP within 1 working day for all new diagnoses

The MDM at BHRUT meets weekly to discuss and manage adult patients with brain and spine tumours. We host a weekly subspecialist MDM for pituitary and spinal patients, participate in a fortnightly MDM for Gamma Knife patients and a monthly MDT for skull base patients.

The Lead Clinician for the NS MDT is Mr Seb Bavetta (Consultant Neurosurgeon). The Lead Clinician for the Cancer Supportive Care MDT is Kim Paskins (Neuro-Oncology CNS). This is agreed with the Trusts Lead Cancer Clinician, Dr Ian Grant and Essex Cancer Network. The MDM discusses approximately 600 newly presenting cases of CNS tumours each year. Patients can be referred in via a number of sources such as the Neurosurgical teams, Essex teams, wards, GPs via the 2 week wait mechanism, CNS’s, Oncology Dept, General Medicine, Neurology. A proforma is completed with the patients’ demographic details as well as their clinical presentation, scan results and the question that the referrer wishes to be addressed (eg confirmation of treatment

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etc). Each referral has a named consultant referrer and an outcome form which is completed at the MDT and signed by the Clinical Lead who chairs the meeting.

BHRUT has dedicated video conferencing facilities for MDT discussions which can link to all London and Essex trusts. The venue has sufficient capacity to accommodate all relevant members attending the meeting. It is equipped with reliable video conferencing equipment to enable communication to take place. There is available a microscope, which is compatible with the video conferencing equipment, to enable projection of slides when needed. There is a compatible diagnostic PACS workstation to enable clear projection of images.

The MDT meeting includes the following information:

A brief clinical history which will include the patient’s presenting symptoms

Any significant past medical history, including a co-morbidity assessment and performance status

Any family history of cancer

The diagnostic tests that have been performed

The question to the MDT

Demographic information and information on the consultant in charge of care.

There are well established referral routes into all MDTs from any specialty within the

Trust which are documented in the Cancer Access Policy.

A member of the Palliative care Team is also in attendance and plays a key role in deciding supportive therapy. The Trust has end of life support in place with patients accessing the Liverpool Care Pathway where appropriate. Symptom control is achieved with the support of the AOS, Palliative Care Team and the Acute Pain

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Team. AHPs will assess the patient rehabilitation needs. Care plans will be agreed in advance with the patient for those where surgery has been decided. An assessment will be made as to whether this can be delivered locally to the patient’s home, or will require ongoing input from the specialist centre or BHRUT. This will include ongoing psychological, physical and social care and will follow the Essex Neuro- rehabilitation guidelines for brain and spine cancer patients. All cancer treated cases are logged centrally onto the data Somerset database. This provides accurate clinical information to aid sufficient and accurate data for collection. This is mainly for national audits such as:

National registries and datasets such Open Exeter and COSD

Local MDT and conferencing capability The Trust’s IM&T systems are selected on the basis of:

Resilience/Reliability

Integration with existing clinical and administrative systems

Integration with national systems ensuring security compliance

Compliance now and in the future with NHS Information Standards Data Set notices

BHRUT conducts a considerable number of IT system upgrades each year to ensure that its IT systems are compliant.

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Agreeing the management plan

Clinical nurse specialist and, where possible, family member or carer present

All possible management options discussed with patients

Patients provided with clear and comprehensive written and verbal information on treatment options

Patients and their carers are involved in agreeing management plans at all stages of the pathway including:

1. A pre-operative meeting

2. A post-operative meeting

3. A Neuro-oncology consultation (if appropriate).

The Neurosurgical team, usually with a CNS present, will discuss the operative options before any surgery takes place.

A post-operative meeting is held to discuss results and future management. If this includes the possibility of radiotherapy and/or chemotherapy, a further consultation is organised with a Consultant Neuro-oncologist and CNS. At all stages comprehensive verbal and written information will be provided to patients and their carers.

In the case of outpatients, one of the Clinical Nurse Specialists is present in meetings with the patient and their family member or carer to discuss the management plan and the patients’ options within 5 working days of the MDT. Inpatients are informed within 1 working day of the MDT meeting. Referral to the Supportive Care MDT is made within 1 week of the original MDT.

Patients and their carers (if appropriate and if the patient wishes) are provided with written and verbal information on all possible treatment options.

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Coordination with other centres

In order to deliver an integrated care pathway the Trust will use its already established links with the following organisations to coordinate and access services/support as required: • Community health providers • Social services • Acute Trusts • Acute Trust laboratories as required • Local voluntary and third sector organisations • Other local treatment centres • Clinical Commissioning Groups • NHS or independent Diagnostic Providers The skills of collaboration and integration play an important role in patient care and the Trust will work with the wider health economy to:

Refine and improve current care pathways

Encourage and develop innovative approaches to pathway management

Ensure that services are delivered at the convenience to the patient (not the provider).

A strong interface between primary and secondary care services is vital to eliminate unnecessary delays and to secure early diagnosis for our local patients. The Trust collaborates with other providers including the Essex teams (hospices, OTs, community teams etc.) as well as local GPs to share information and work jointly to ensure the patient pathway is delivered without delay and the patient is supported throughout. Adherence to the cancer care pathway is monitored by core members within the Trust.

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Communication Skills In order to ensure that staff are appropriately trained to communicate with patients on the cancer pathway, all current key members of the Trust’s clinical staff, including therapists, have obtained certificates of attendance on Advanced Communication Skills training. The Trust will maintain access to the advanced communication skills training supported by St Francis Hospice. In addition, facilities are in place to run in house training sessions to wider members of the cancer team.

The Trust is also in the process of implementing level 4 supervision for those who have undergone level 2 psychology training.

Neurosurgery All surgery for brain and spine tumours undertaken in 1 of 2 neuro-oncology centres (1 for inner London, 1 for outer London and Essex) by a dedicated neuro-oncology surgeon

All neuro-surgeons undertaking neuro-oncology surgery meet the definition set out in the pathway specification, including undertaking 50% of clinical work in neuro-oncology

Neuro-oncology services

Surgery for brain and spine tumours is carried out at Queens Hospital which is the main site of the Regional Neurosciences Centre for Outer North East London and

Essex. The Neurosurgical Unit is equipped with 2 dedicated modern theatres and operates 23 theatre sessions per week and full access to the CEPOD list. There is access to a 12-bedded Neuro ITU/HDU unit and a 30 bedded surgical ward with capacity to flex up to an additional 12 beds on the adjacent ward should this be required in the future.

The general aim of surgery for brain tumours is to carry out the maximum safe resection possible. Difficult cases are routinely discussed between neurosurgeons in the MDM or informally. If it is felt that resection would be made safer if performed as an awake procedure, the patient would be referred to 1 of 2 Neurosurgeons who routinely perform awake craniotomies.

Our neurosurgeons will comply with the definition of undertaking 50% of their work

Patients not currently entered into GALA 5 trial. However, new theatre microscopes on order will enable those patients suitable to be selected.

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have access to intensive therapy/critical care services as may be required by some patients undergoing complex surgery

Neuro-oncology centres have access interventional radiology services

in neuro-oncology and maintain other skills to support head and neck trauma and all partake in the on-call rota. All consultants are job-planned to attend the weekly MDT and do so on more than 65% of occasions per annum. All meet the requirement to attend advanced communication training on how to break significant news and all neurosurgeons undertaking surgery for brain and spine tumours attend appropriate courses on neuro-oncological surgery.

Patients are given practical and written information to plan how they will approach the challenges of treatment. Relatives/carers are also involved in the pre-operative process with particular emphasis on the provision of nutrition. Written information and the contact number of the CNSs are provided. Prior to all elective surgical procedures, the following pre-operative clinical and social assessment is undertaken. This will include: • Pulse, BP, Oximetry • Blood tests • ECGs • MRSA screen • Any additional diagnostics • VTE risk assessment • Renal function • Pathology • Mobility, manual handling • Tissue viability • Falls and frailty assessment • Home situation discharge assessment • Social Service requirements • Transport needs • Rehabilitation requirements

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• Home visit pre op as required • Follow up care • Medication requirements If not carried out pre-operatively because surgery was undertaken as an emergency, all of the above will be undertaken during their surgical pathway. The Trust plans to provide 7 day working for all support services that will maintain therapy input at weekends. This will benefit those patients whose diagnostics or treatment takes place later in the week.

Neuroradiology Centres have a neuroradiology service that meets all of the requirements for cover and timeliness of service set out in the specification

The Trust also has a strong neuro-interventional radiology team providing patients with access to relevant diagnostic and treatment options. There are 6 full time Neuro-Radiologists.

The Trust’s neuroradiology service complies with the specification for cover and timeliness of access in that diagnostic imaging is routinely accessed within 24 hours of request, a neuronavigation scan is provided on the day of surgery, post-operative medulloblastoma patients receive an MRI or MRI fusion with planning CT. MRI scans are used routinely to follow patients up.

Neuropathology Centres have a neuropathology service that meets all of the requirements for cover and timeliness of service set out in the specification

The Trust has a neuropathology service that meets the specification for cover and timeliness of access. 2 neuropathologists provide weekday cover between them between 9 – 5 all year round with on-call cover for planned intraoperative assessments on weekends.

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The pathology department is compliant with Clinical Pathology Accreditation (CPA), Medicines and Healthcare Products Regulatory Agency (MHRA), the Human Tissue Authority (HTA) and the Royal College of Pathology.

An integrated IT pathology solution is in place to include digital dictation and is in the process of ‘going live’. All required reporting is undertaken by qualified and experienced consultants, clinical scientists or radiographers as appropriate who are registered with nationally recognised professional bodies. The competency of pathology reporters and staff is assessed and reviewed: All undertake formal continuing professional development and participate in: • National External Quality Assurance Schemes (NEQAS) • Internal Quality Assurance • Peer Reviews • Clinical Audit • Quality and Safety • Clinical Governance

Diagnosis following surgery

Clinical nurse specialist and, where possible, family member or carer present

Patients provided with clear

As well as a neurosurgeon or neuro-oncologist, a CNS is always present to deliver diagnosis and our 2 CNSs support all clinics that patients are seen. Patients are always provided with clear verbal and written information on their diagnosis and treatment options.

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and comprehensive written and verbal information on diagnosis and treatment options

Patients offered prompt access to specialist psychological support

Patients are offered prompt access to psychological support via the Cancer Psychology team and clinical psychology for assessment following surgery.

The neuropsychological impact of brain tumours has been well described. Individuals affected by brain tumours and their families/carers often have the challenge of coping with a diagnosis as well as changes in memory and other aspects of cognition, emotion and behaviour. Services within the Neurosciences Division at Queen’s Hospital have Clinical Neuropsychologists who offer comprehensive neuropsychological assessments in order to establish the effects of a tumour and / or treatment and to provide advice to patients/families or recommendations for ongoing care needs.

Inpatient care Patients treated with care and consideration and accommodated in single sex wards

Proactive and early contact with local hospital, GP and community services prior to discharge

The hospital aims to treat all patients with dignity, care and consideration and patients are accommodated in single sex bays on the surgical ward.

CNSs ensure proactive and early contact with local hospitals, GP and relevant community services prior to discharge.

Cancer supportive care MDT meeting

Implements the non-surgical elements of the management plan produced by the neuroscience MDT, including radiotherapy, chemotherapy and supportive care

A Supportive Care MDT is held weekly to discuss the non-surgical elements of the management plan and this includes radiotherapy, chemotherapy and supportive care.

Improvements could be made to ensure the Supportive Care MDT is more effective and membership extended to include Neurologist, Radiologist and Radiographer with interest

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in brain and spine tumours.

Radiotherapy Delivered in a London Cancer neuro-oncology centre, or in a neuro-oncology centre in a neighbouring area where this allows care closer to home

Treatment for primary tumours of the brain and spine delivered only by clinical oncologists with a specialist interest in neuro-oncology

Treatment follows recommendation of the MDT and follows agreed London Cancer protocols and guidelines

Access to all appropriate treatment types, including highly-focussed radiotherapy techniques such as IMRT and radiosurgery

Radiotherapy is delivered at Queens following MDT recommendation and complying with London Cancer protocols for timely access. In fact patients with high-grade tumours are treated within 2 weeks and no later than 4 weeks in 100% of cases.

Radiotherapy techniques The Trust’s radiotherapy department has up-to-date, centre-specific information for Brain and Spine patients detailing the processes and side effects of treatment. The Trust recently won a bid from the Radiotherapy Innovation Fund and £670,000 was awarded. This money was used to upgrade the department to deliver IMRT and RapidArc. IMRT and VMAT modalities are fully available at BHRUT. This will support an integrated patient pathway where surgery is also undertaken at BHRUT as a specialist centre. Cone Beam CT based adaptive radiotherapy will be available from October 2013. Palliative radiotherapy is provided at the Trust. 100% of patients receive this within 14 days of referral. With the exception of specialist radiotherapy treatments such as stereotactic radiotherapy or radiosurgery (linac-based, CyberKnife or GammaKnife) the capacity and capability is available within the Trust to deliver a full service. The makeup of the radiotherapy department includes:

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Clinician provision Radiotherapy physics provision Therapy radiographer provision Engineering provision Treatment machine capability Treatment machine capacity Radiotherapy planning software Dose verification equipment.

All of the above is IMRT/VMAT/IGRT compliant. The radiotherapy service runs 5 days per week using 3 Linacs with a Radiotherapy on-call service operating weekends between 09:00-17:00. Treatments are offered within the timeframe to ensure all waiting time treatment standards are met. There is an out of hours support service in place. All treatment protocols are agreed and available within the Radiotherapy department’s quality management system. These are ISO9001 compliant. The Head of Radiotherapy and Medical Physics has overall responsibility for maintaining this system. Therapeutic radiographers provide patient support prior to and throughout their treatment pathway. For those patients also undergoing chemotherapy additional support is provided by the Oncology Day Unit nursing staff and the Neuro- Oncology Clinical Nurse Specialists. There are department specific information booklets that detail treatments and the anticipated side effects. The CNS provides radiotherapy information and contact details are given at the time of diagnosis. There is provision for patients to have 24-

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hour access to treatment specific advice and support via the Acute Oncology Service if this is needed. There is a weekly multidisciplinary patient review to proactively manage and grade toxicities. This is consultant led and assessment tools are used throughout. There is a consultant and CNS weekly clinic to discuss palliative radiotherapy.

Patients are seen weekly by a Radiotherapy consultant during treatment.

Clinical oncologists with a specialist interest in neuro-oncology have access to all apt treatment types including IMRT and Radiosurgery.

All treatment for primary tumours is delivered by the Trust’s Clinical Oncologists with a specialist interest in neuro-oncology and adheres to the London Cancer protocols and guidelines.

Access to all appropriate treatment types such as highly-focussed radiotherapy eg IMRT and radiosurgery

All patients are considered for trials either at BHRUT or elsewhere.

Chemotherapy Delivered only by oncologists with a specialist interest in neuro-oncology

Treatment follows recommendation of the MDT and agreed London

Chemotherapy for brain and spine tumour patients is delivered by our oncologists with an interest in neuro-oncology and complies with agreed London Cancer protocols and guidelines in that it is accessed following MDT recommendation and patients are given equal access to trials.

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Cancer protocols and guidelines Chemotherapy service at BHRUT

BHRUT’s catchment area for general cancer services is 750,000 with additional patients being referred from the Brentwood area in Essex for local treatment. Chemotherapy is delivered from BHRUT’s 2 main hospital sites: Queen’s Hospital and King George Hospital (KGH). Both sites have purpose built centres with a recently refurbished centre at Queen’s hosting 30 chairs and 6 beds. The Chemotherapy Day Unit is located adjacent to all other cancer services within the Trust and has its own dedicated entrance for patients and carers with a large car park to the front of the centre. The centre allows for emergency admissions for chemotherapy patients as well as planned procedures and admission for those poorly from their chemotherapy. The centre opens from 9 am to 7.30 pm 5 days per week and is planned to move to 7 day opening by 2014. Patients requiring emergency admissions for metastatic brain and spine cancer can be admitted via the service within opening hours or via the Neurosurgical Registrar on-call 24/7. Patients with primary brain or spine cancers access emergency admission via the Neurosurgical Registrar on-call.

Supportive care is also provided from both sites (blood transfusions, platelets, bisphosphanats, venus sections, planned care such as hickman line insertions, biopsies, bone marrow biopsies, ascetic drains, picc line insertion (nurse led) with ultrasound-guided picc line insertion due to be in place by October 2013. There are 13 qualified nursing staff and 1 HCA who work across both of the BHRUT chemotherapy sites as well as a matron and lead chemotherapy nurse. Medical cover is provided via an SHO for the day unit and an SPR with 24/7 access to a Consultant Oncologist and Haematologist out of hours. There is junior doctor on-site cover at weekends during the day. Located within the Cancer Centre is also a complimentary therapy unit staffed by a BHRUT employee and volunteers offering massage, reflexology and aromatherapy

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for patients and their carers. Appointments are available daily. Access to chemotherapy is decided by the multi-disciplinary team at the MDT and is based on clinical need. If required, patients can access their chemotherapy straight away. The Cedar Centre at KGH has 20 chairs and offers Chemotherapy and Supportive Care as outlined above with the centre opening from Tuesday to Friday, 9 am to 5pm.

There is an excellent Acute Oncology Service (AOS) within BHRUT, supported by the clinicians and 3 dedicated AOS Nurses, all of which work an 8am – 8pm rota. This is set to become a 7 day a week service with the recruitment underway of 2 further nurses.

The Chemotherapy Day Unit provides acute assessment beds in order to support the AOS. This unit has recently been extended and refurbished and the service has been nominated for a national award run by the NURSING TIMES for developing an outstanding oncology service.

There are 8 consultants of which one is a dedicated AOS lead. All consultants have dedicated time in their job plans. Administrative support for this service is in place. This service was assessed in November 2012 and achieved good compliance with peer review standards for a newly formed service.

All patients attending A&E are flagged by the A&E staff to the AOS service. The Trust is currently looking at extending the use of the A&E Symphony system to introduce an electronic flag.

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During working hours patients are seen in the assessment beds within the Chemotherapy Day Unit to avoid any unnecessary waits in A&E. There are also ring-fenced beds within the specialist oncology ward for out of hours admissions. There are excellent links with the Neuro-Oncology team and Palliative Care service. Contact details of all neuro-oncology staff are available in the emergency department. The neuro-oncology clinicians can directly refer to the AOS and palliative care service.

Follow-up Repeat MRIs carried out at a frequency determined by the MDT and patients with progression identified by post therapeutic imaging discussed at neuroscience MDT

Neuro-oncology centres work in partnership with local cancer units, GPs and hospices to implement new models of long-term follow-up and survivorship and to limit follow-up the centre

All patients issued with shared care folder so that professionals in all settings can access key information

The MDT determines the frequency with which repeat MRIs are carried out to determine progression and discussed at the Neuroscience weekly MDT. All cancer patients are treated holistically.

The Neuro-Oncology centre has strong links to local units who attend the MDT via a video link as well as to hospices and will work with its partners to implement new models of long-term follow-up and survivorship. Follow-up at Queens as the Specialist Centre is offered to local patients and is a choice offered to patients from Essex. However, patients are encouraged to have follow-up treatment locally.

Vocational therapy is accessed via Macmillan.

Patients are issued with a folder containing information about their diagnosis and treatment plan. However, this could be further developed to incorporate information from other sources such as the GP unit and hospice.

The Trust could develop the shared-care folder further and is considering how to roll out shared care into survivorship. An information prescription is offered to all patients which forms the beginnings of a shared care folder.

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from neuro-oncology centre, local unit, GP and hospice

Neuro-rehabilitation

Neuro-oncology centres and local cancer units ensure neuro-rehabilitation assessment and provision available at key points in line with national, evidence-based rehabilitation pathways

Provision of clinical psychology to address identified patient needs

The Trust ensures that patients for neuro-rehabilitation are assessed as appropriate for neuro-rehabilitation services and the Neurosciences Centre fully meets the National Cancer Action Team (NCAT) criteria for presentation of suspected or confirmed spina cord compression; unstable spine after treatment, discharge, post- hospital discharge and approaching end of life.

BHRUT proposes the provision of neuro-rehab services for its patients and would be willing to provide level 1 or 2 neuro-rehab services which will include rehabilitation for patients with brain and/or spine cancer

The neuropsychological impact of brain tumours has been well described. Individuals affected by brain tumours and their families/carers often have the challenge of coping with a diagnosis as well as changes in memory and other aspects of cognition, emotion and behaviour. Our services within the Neurosciences Centre at Queen’s Hospital have Clinical Neuropsychologists who offer comprehensive neuropsychological assessments in order to establish the effects of a tumour and / or treatment and to provide advice to patients/families or recommendations for ongoing care needs.

The Trust has an in-house Clinical Psychology Team with a Consultant Clinical Psychologist and a band 8b Clinical Psychologist and is currently recruiting to a third Clinical Psychology post.

Access to neuro-rehabilitation services was indentified as a weakness in our latest Peer Review.

The Trust proposes the development of Neuro-rehabilitation services and is happy to work with commissioners to provide these locally.

Supportive and palliative care

Centres and local units have clear referral pathways for patients with palliative and

There are clear referral pathways for patients with palliative care needs as can be evidenced in our Operational policy and this includes clear referral guidance to GPs and the Palliative Care Team for management of end of life care and complex

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specialist palliative care needs

Clear referral guidance for management of end of life care and complex symptom control, including management of physical disability

GP and palliative care team to manage patient as appropriate

symptom control which includes management of physical disability.

The Trust has end of life support in place with patients accessing the Liverpool Care Pathway where appropriate and symptom control is achieved with the support of the Acute Oncology team, Palliative Care team and the Acute Pain team. District Nurses within the primary care setting also support the discharge of patients. Referral forms are available to all staff and GPs have direct access to palliative care telephone numbers. Protocols are available on the Trust Internet for the management of end of life care and complex symptom control.

There are two full-time and one part-time consultant, supported by 7 CNS posts, dedicated to palliative care. There is a 24/7 palliative care consultant service available. This service provides and advises on complex symptom control and will shortly deliver a programme to extend cover at weekends.

There is clear referral guidance available in the Trust for management of end of life and all internal referrals are seen urgently within 24 hours.

The Specialist Palliative Care team is linked with the community services; St Francis or St Joseph’s Hospice for care in community. A triage telephone service is available at the hospice for advice from the Oncology Community team. Patients have direct access to this service and can also access the CNS in hours or the oncology ward out of hours. The Palliative Care MDT is fully established. There are domiciliary visits and there is cross-working and provision of on-call palliative care services with St Francis

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Hospice.

Research and innovation

Neuro-oncology centres have access to multidisciplinary oncology service including clinical trial research and research nursing

Centres take full part in all relevant clinical trials

Centres carry out prospective audit of service and publishes transparent data on outcomes, including quality of life (patient reported outcome measures)

The Trust’s Neuro-Oncology centre has access to multi-disciplinary oncology service including clinical trial research and has a strong cancer research base with a dedicated team of research nurses supporting clinicians. We take part in all relevant clinical trials and are awaiting the hardware that will enable us to join GALA 5.

If a trial is not available at BHRUT, we refer to other centres such as UCLH or Addenbrooks.

BHRUT has a well‐staffed Research and Development Unit that is supported by clinical research assistants and specialist research nurses. The team supports trials led by the specialists as well as the Oncologists.

The Trust has established policies providing staff guidance that cover clinical activity and the governance framework. The diagram below demonstrates the governance structure for research and development and audit. Clinical trials recruitment is embedded into the MDT meeting process.

Current Clinical Trials Activity for Brain and Spine Cancers;

National Brain tumour study,

· To establish a DNA resource to enable identification of genetic variants conferring an elevated risk of gliomas.

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· To identify genetic variants influencing glioma risk through genome-wide scans of Single Nucleotide Polymorphisms (SNPs) and other association-based analyses.

· To ascertain and collect families segregating gliomas and using these identify novel susceptibility alleles through genetic linkage.

· To identify environmental risk factors influencing glioma development.

Previously completed trials:

AVAGLIO

A randomized, double blind, placebo controlled, multicenter Phase III trial of bevacizumab, emozolomide and radiotherapy, followed by bevacizumab and temozolomide versus placebo, temozolomide and radiotherapy followed by placebo and temozolomide in patients with newly diagnosed glioblastoma.

BR12

A prospective randomised trial comparing Temozolomide with PCV in the treatment of recurrent WHO astrocytic tumours grades III & IV.

Current reorganisation of cancer services in London and the new Integrated Cancer Systems will impact on the final logistical organisation of this MDT. We are already in discussion with UCL/Queens Square/BLT as to how services are best developed as part of ‘London Cancer reconfiguration’.

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Education and training

Neuro-oncology centres carry out multidisciplinary education within the NHS to raise and maintain awareness of brain and spine cancers and their management

The service carries out multi-disciplinary training to junior doctors and to local centres on raising awareness and management of brain and spine cancers.

We provide an Oncology Registrars Course, Pituitary Study days, Spine Study days and a Neurosciences Study Day for nurses, OTs and other therapies.

In order to ensure that staff are appropriately trained to communicate with patients on the cancer pathway, all current key members of the Trust’s clinical staff, including therapists, have obtained certificates of attendance on Advanced Communication

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Skills training. The Trust will maintain access to this training supported by St Francis Hospice. In addition, facilities are in place to run in house training sessions to wider members of the cancer team.

Patient travel Centres have robust patient travel plan in place

Patients informed of support available for travel to other neuro-oncology centres and local cancer units

The Trust will meet patient requirements for provision of non-urgent transport through BHRUT’s contracted Non-Emergency Patient Transport (NEPT) and Emergency Medical Technician (EMT) Services. G4S, the leading provider of patient transport services, is working in partnership with BHRUT to meet the needs of the patient and GPs with a 24/7 operational service available 365 days of the year. There is a fleet of 29 vehicles operated by 83 professional, qualified, experienced staff. The service is an integrated part of the patient’s clinical pathway. G4S and their staff take great pride in the level of customer care they provide to our patients and they play a significant part in the patient experience. The Trust will reimburse allowable patient transport costs on the day where relevant. The specialist team will Inform patients of support available for travel to the departments serving the cancer centre.

There is dedicated finance assistance available for patients to help complete their benefits application for travel costs. The Trust’s Cancer patients are also supported by a Citizens Advice Bureau worker with two dedicated information centres that provide all of the necessary patient information specific to their condition.

For those patients eligible and requiring transport, the Trust also provides free parking for patients undergoing Chemotherapy and Radiotherapy. Free parking will be available for all cancer patients undergoing treatments regardless of their home address. There are 94 spaces for oncology patients, 65 free parking spaces for

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disabled patients and a further 600 spaces for patients or visitors.

For patients who prefer to use public transport Queen’s Hospital is well served by local transport links. There are also are currently discussions taking place with Transport for London to further enhance bus routes and with the local council to further increase car parking facilities particularly at the Queen’s Hospital site.

brain and spine cancer · 3 in our role as a neurosciences specialist centre we see brain and spine...

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