Download London Cancer UCLH Application Brain and Spine

Improving Services for Brain and Spine Cancer
Application to London Cancer
Trust
University College London Hospitals NHS Foundation Trust
Clinical lead
Professor John Duncan
Managerial lead
Adrian Capp
Date completed
11th July 2013
Applying to provide:
Local brain and spine unit
⌧
Specialist neuro-oncology centre
⌧
Proposed sites
Local brain and spine unit
UCLH
Specialist neuro-oncology centre
UCLH
Foreword
th
Following the letter of the 11
June 2013 inviting UCLH to submit an
In recent years, we have expanded neurosurgical services at Queen Square,
application to London Cancer to host specialist services for the diagnosis
developed the purpose built Molly Lane Fox unit for brain cancer patients,
and treatment of brain and spine cancer, we are delighted to provide our
and introduced new technologies for the treatment of brain cancer such as
response as detailed in this application.
the Interventional MRI. We have allocated funding to an additional theatre to
The UCLH Board of Directors has endorsed the UCL Partners and London
Cancer vision for improving outcomes, survival, functional recovery and
patient experience of cancer patients across North and East London. We
want the whole population to benefit from the national and international
allow further expansion of these facilities, and we have secured funding from
the Department of Health to build one of the UK’s two Proton Beam Therapy
centres at UCLH, which will improve outcomes and reduce complications in
the treatment of brain cancer.
excellence in diagnosis, treatment, and care that we deliver here at the
Our approach is based on importance of outstanding clinical and academic
UCLH. To achieve this, our Board of Directors has designated cancer as one
leadership, Key leaders in surgery and oncology have been identified to take
of our key organisational priorities, and supported this with significant
forward this implementation process, supported by clinical academic staff in
investment to create the organisational capacity to deliver this vision for
many other disciplines.
UCLH and for London Cancer. And we have established a ground-breaking
partnership with Macmillan Cancer Support to deliver better patient
experience alongside excellent treatments and outcomes offered at UCLH.
The document provides initial thoughts on the implementation timetable. We
will continue to work in partnership with London Cancer and NHS partner
organisations at all stages of the implementation. This emphasis on
This document sets out how we will use these strengths to deliver the vision
partnership working will ensure that patients are seen locally wherever this is
for specialist Brain and Spine Cancer Services for London Cancer. Queen
possible in the integrated pathway. The implementation plan will be modified
Square is the UK’s pre-eminent Centre for Clinical Neuroscience and
in the light of these continuing discussions and also,
research, combining the outstanding clinical services provided by the
where appropriate, the outcome of public consultation.
National Hospital for Neurology and Neurosurgery (NHNN) with the
We look forward to working with London Cancer on the
internationally recognised research carried out by the UCL Institute of
implementation of these exciting proposals
Neurology (IoN). Together these organisations provide an unrivalled critical
mass of clinical and research excellence that spans the entire translational
pipeline from world class discovery neuroscience to high quality diagnostics,
patient care and outcomes. The plans outlined in this document for a world
class multi-disciplinary Brain and Spine Cancer Service benefiting the
population of North and East London will be a key part of the strategic
Sir Robert Naylor
development of Queen Square, supported by both UCL and UCLH.
Chief Executive
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Contents
Contents
1.
2.
3.
4.
5.
Introduction ................................................................................................................................................................................ 1
Cancer Services at UCLH ........................................................................................................................................................... 2
Brain and Spine Cancer Services at UCLH ............................................................................................................................. 12
Academic Neurosurgery and Neuro-oncology research at UCL Institute of Neurology...................................................... 29
Delivering a New Pathway for Patients with Brain and Spine Cancer .................................................................................. 31
Leadership.................................................................................................................................................................. 31
Patient Pathway ......................................................................................................................................................... 33
Joint Working ............................................................................................................................................................. 34
6.
Maintaining Local Access and Enabling Patient Transport................................................................................................... 36
Local Services ............................................................................................................................................................ 36
Transport .................................................................................................................................................................... 38
7.
Improving Patients’ Outcomes and Experience ..................................................................................................................... 42
Audit and Outcomes .................................................................................................................................................. 42
Patients’ Experience .................................................................................................................................................. 43
8.
Providing the Capacity to Transform Services...................................................................................................................... 47
Organisational Capacity ............................................................................................................................................ 48
Impact of Change ....................................................................................................................................................... 49
Implementation Plan .................................................................................................................................................. 50
9.
Conclusion: A High Quality Service for Patients and Carers ............................................................................................... 53
Appendix A: Outline of Proposed Local Brain and Spine Cancer Unit ......................................................................................... 54
Appendix B: Outline of Proposed Neuro-oncology Centre ........................................................................................................... 58
Appendix C: Letters of Support ....................................................................................................................................................... 69
Appendix D: Clinical Trials Data ...................................................................................................................................................... 74
Appendix E: Transport Arrangement to UCLH ............................................................................................................................... 84
Appendix F: DARTRIX ...................................................................................................................................................................... 85
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Introduction
1.
Introduction
1.1.
This document supports UCLH’s application to host specialist and local Brain and Spine Cancer Services by outlining the Trust’s overall strategy and
strengths, along with details of the current and proposed future service provision.
1.2.
It is acknowledged that combining existing specialist centres and establishing robust and efficient patient pathways for patients with brain and spine
cancer is a complex task and will involve much collaboration between the organisations within North and East London. Our proposal focuses on the
aspiration of providing a centre of excellence for surgery and oncology at UCLH, with the support from our partner organisations to deliver high
quality care closer to home for patients where appropriate.
1.3.
We have given careful consideration to the service specification produced
Domain
Reference
and approved by the Brain and Spine Cancer Pathway Board and have
Leadership
Section 4: page 31
Patient Pathway
Section 4: page 33
Joint Working
Section 4: page 34
Local Services
Section 5: page 36
and Spine Cancer. We have evidenced how we will deliver in the domains
Impact of Change
Section 7: page 49
considered essential to a high quality patient pathway.
Transport
Section 5: page 38
Audit & Outcomes
Section 6: page 42
Organisational Capacity
Section 7: page 48
developed proposals that will enable UCLH to achieve the aims and
aspirations of London Cancer and to meet the specific requirements for Brain
and Spine Cancer Services. This document provides an overview of the
strengths of UCLH’s clinical services and research capability, with particular
reference to cancer services, and demonstrates how we propose to achieve
excellence against the criteria laid out in the service specification for Brain
1
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Cancer Services at UCLH
2.
Cancer Services at UCLH
2.1.
The UCLH Board of Directors has endorsed the London Cancer vision: saving lives, improving patient experience, and optimising the quality of life of
people living with cancer. By supporting the implementation of this vision, we will help the population of North and East London to benefit from cancer
services which compete nationally and internationally on excellence in diagnosis, treatment, and care.
UCLH Vision and Values
2.2.
Implementation of the vision will be underpinned by the
UCLH values which outline the behaviours and standards
as to how we serve our patients.
2.3.
Our partnership with Macmillan Cancer Support further
shapes our services for cancer patients and our innovation
in care and support to people affected by cancer.
Both
UCLH and Macmillan Cancer Support are fully committed to
sharing these innovations and improvements across the
whole of London Cancer.
2
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Cancer Services at UCLH
Strategy for Cancer Services
2.4.
The UCLH Board of Directors has designated neurosciences and cancer as two of the key organisational priorities and supported significant investment to
create the organisational capacity to deliver our vision for UCLH and London Cancer. The leadership role which UCLH proposes to play in cancer
services across London Cancer will build on existing strengths and expertise from many parts of UCLH working in collaboration with University College
London (UCL), to improve cancer care across all parts of the patient pathway. The key components of our strategy for cancer services are articulated
below and the specific strengths of the Brain and Spine Cancer Service at UCLH are described in Chapter 3.
Diagnostic Services
2.5.
The Lysholm Department of Neuroradiology (LDNR) at Queen Square has a pre-eminent position of regional, national and international leadership in
Neuroradiology. In collaboration with the Academic Neuroradiological Unit, the clinical scientist team will implement the most advanced imaging
techniques, enabling the translations of the latest developments into clinical care to the benefit of the patients. Most exciting is the prospect of bringing
the Chemical Exchange Saturation Transfer (CEST) technique, pioneered by Professor Xavier Golay, into clinical use thereby allowing the assessment of
physiological changes which is currently performed by FDG PET scanning, using MRI without the injection of radioactive substances.
2.6.
As one of the first wave of National Bowel Cancer Screening Centres, we have identified and provided early and effective treatment for over 200 patients
with colorectal cancer across North London over the last six years. The success of this programme has resulted in its expansion to include patients up to
age 74 and further expansion of the service is planned. In lung cancer, over 100 patients have benefited from pioneering work at UCLH in the early
detection of lung cancer, which showed that in many patients with bronchial dysplasia their cancer could be detected when curative treatment is still
possible. We are now undertaking a study to develop a Computed Tomography (CT) screening programme for lung cancer in collaboration with London
Cancer. In upper GI cancer, nearly 500 patients with early neoplasia of the oesophagus have been identified and treated early, avoiding the need for
major surgery, and we have shown that this treatment prevents progression to invasive cancer.
2.7.
UCLH holds an undisputed global leadership position in novel diagnostic methods for men at risk of prostate cancer. We hold the most comprehensive
trial portfolio globally and serve as a national referral centre. Both the diagnostic and therapy techniques developed at UCLH are now being adopted in
many of the world's leading centres of excellence. On the 30th May 2013, Professor Mark Emberton was awarded the William Farr Medal for his services
to men with prostate cancer. Accepting this award from the Worshipful Society of Apothecaries, Professor Emberton cited the culture of innovation at
UCLH that permitted such work to advance at a rate faster than any other institution anywhere.
3
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
2.8.
Cancer Services at UCLH
The Department of Nuclear medicine was the first in UK to introduce Positron Emission Tomography (PET)/CT and PET/Magnetic Resonance Imaging
(MRI) in clinical practice for cancer patients. The department works closely with all of the cancer teams at UCLH and has developed many important
innovations to improve the diagnosis and staging of cancer.
Developing High Quality Specialised Services That Can Be Delivered Locally
2.9.
UCLH has demonstrated excellence in radiotherapy services by the high proportion of radiotherapy treatments which we deliver through IntensityModulated Radiation Therapy (IMRT). We have offered to take the lead on behalf of London Cancer to develop a single radiotherapy service model which
will ensure these highest technical standards are delivered locally on a consistent basis. The importance of high quality technical radiotherapy has been
acknowledged by Professor Sir Mike Richards as supporting improved outcomes, increasing cure rates and improving patient experience by minimising
the long-term side effects of treatment.
Excellent Highly Specialised Treatment Hosted at UCLH
2.10.
UCLH already provides several nationally and internationally renowned specialist cancer services serving the population of London Cancer and beyond.
Our established and successful robotic surgery programme is the cornerstone of the specialist bladder and prostate cancer service which UCLH has
agreed to provide for London Cancer. This programme started by providing robotic techniques in place of traditional surgical techniques, reducing length
of stay and complication rates and improved cancer clearance margins. The programme expanded into more innovative areas offering an alternative to
open surgery for bladder cancer patients undergoing cystectomy or lymph node dissection following penile cancer.
2.11.
The robotic programme has been greatly enhanced by the creation of a minimal access surgical training facility within the education centre at UCLH, with
robotic surgical systems permanently installed within the centre, dedicated solely to training. This centre is the first of its kind in the UK and has enabled
specialist training for healthcare professionals both at UCLH and for the European community. This centre also enables junior doctors to start their
surgical robotic training and become proficient in minimal access surgical techniques at a much earlier stage in their careers, ultimately improving safety
and quality of care for patients.
This technology and training facility will offer a platform for innovation in many other specialities with expected
developments in robotic surgery in Head and Neck, Gynaecology and Upper GI cancer surgery. Complex surgery at UCLH is supported by our world
class ICU, which has outstanding clinical outcomes, including a Standardised Mortality Rate of 0.77 and short lengths of stay for high dependency
patients, and participates in many multicentre clinical trials consistently resulting in high impact publications.
4
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
2.12.
Cancer Services at UCLH
UCLH has one of the largest and best equipped Haematology departments in the UK. For example, we treat the largest number of Lymphoma patients of
any UK centre and we provide the largest dedicated apheresis service in the country, undertaking planned and emergency procedures 24 hours a day,
staffed by a team of highly experienced nurse specialists, in conjunction with senior haematology clinicians.
2.13.
We have secured £125million central government funding to develop one of the UK’s first two Proton Beam Therapy (PBT) centres to apply the highest
possible technical radiotherapy service to specific specialist patient groups who will benefit from this intervention. The proposed Department of Health
casemix focuses on children and difficult cancers with brain cancer representing 16% of the patients that are treated with PBT.
2.14.
The teenage and young adult cancer service at UCLH has
developed from the first teenage cancer service which opened
in 1990 at the Middlesex Hospital and is now the largest in the
world, hosting 30 in-patient beds and a dedicated, state-of-theart out-patient, day-care and ambulatory care facility. These
patients benefit from access to world class cancer treatments,
our ambulatory care model which allows people to stay in
comfortable surroundings with their families, and a large,
expert multidisciplinary team, dedicated to enabling every
patient to achieve the psychosocial potential they have despite
having experienced the challenges of cancer and cancer
treatment.
5
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
2.15.
Cancer Services at UCLH
The Interventional Oncology Service at UCLH provides world-class image-guided cancer therapy for direct tumour treatment and cancer-related symptom
control. Treatments include percutaneous tumour ablation (tumours are targeted in real time and destroyed using either heat (radiofrequency, microwave
or laser ablation) or cold (cryotherapy); Vascular Oncology (tumours targeted through their blood supply to deliver chemotherapy or radiotherapy direct to
the tumour) and pain control (using a variety of new techniques that involve the targeted delivery of analgesics to peripheral nerves, plexuses or more
centrally).
Driving Research and Improvements in Treatment in Partnership with University College London
2.16.
Clinical research underpins all aspects of the high quality services at UCLH, the cornerstone being a highly developed clinical trials programme with a
total of 1,050 patients entered into National Institute for Health Research (NIHR), academic, commercial and early phase clinical trials last year. A key
feature of the commitment to cancer research at UCL and UCLH is the close proximity of translational and clinical laboratories (in the UCL Cancer
Institute in Huntley Street) to the innovative treatment facility (the University College Hospital Macmillan Cancer Centre) directly opposite. From 2018, the
new PBT serviced will be housed in the basement of our new Phase 4 development in the same street as the Cancer Institute and Cancer Centre. This
concentration of clinical and academic excellence in cancer will help to promote further innovations and improvements.
2.17.
While researchers develop therapeutic advances in cancer, our Clinical Research Facility (CRF) in Phase 2 of University College Hospital provides a safe
environment to trial these therapies and improve current and future treatments and outcomes. This early phase clinical trials facility is now the second
largest of its kind in London (after the Royal Marsden Hospital). The Wolfson Foundation announced a £20m grant in 2011 to establish The Leonard
Wolfson Experimental Neurology Centre at Queen Square. The centre focuses on understanding and treatment of neurodegenerative diseases, including
Alzheimer’s disease and Parkinson’s disease, as well as less common but equally devastating conditions such as Huntington’s disease and motor
neurone disease.
2.18.
UCLH is a key partner with the UCL Cancer Institute and Great Ormond St Hospital in the Cancer Research UK Centre at UCL. Research grant income to
the Centre has increased from £19million in 2009 to over £41million this year, making it the second largest such Institute in the UK (the largest being the
Institute of Cancer Research linked with the Royal Marsden Hospital). This Centre exemplifies the seamless integration of basic, translational and clinical
cancer research with the outstanding treatment and care offered at UCLH.
6
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
2.19.
Cancer Services at UCLH
Major research grants include the UCL/Kings College London (KCL) Comprehensive Cancer Imaging Centre from Cancer Research UK and the
Engineering and Physical Sciences Research Council which supports imaging and biomarker studies; the UCL Cancer Research (UK) Health Behaviour
Research Centre which conducts population-based health research studies, especially studies related to diet, obesity and smoking, directly relevant to
predisposition for developing Upper GI, Head & Neck and Lung Cancer Services; and the UCL Biobank for Health and Disease, which archives
histopathological material from all cancer types. These provide approved access to this material for groups across the UCL Cancer Institute and is rolling
out a consent process for all hospitals in University College London Partners (UCLP).
2.20.
UCL Cancer Institute researchers have led a number of studies since 2010 which have had a global impact on cancer research and clinical care.
Significant advances include; identifying the best chemotherapy combination for advanced gall bladder and bile duct cancer; demonstrating that a single
dose of intraoperative radiation therapy may be as effective as a course of external beam radiotherapy in breast cancer in the TARGIT trial; discovering
the genetic architecture of acute leukaemia; developing highly successful bone marrow transplant protocols for patients with advanced Hodgkin’s disease,
aggressive non-Hodgkin’s lymphoma follicular lymphoma and leukaemia; conducting the first genome-wide analysis of the genetic variation between
different regions of the same tumour using samples of kidney cancer; discovering that an experimental drug, olaparib, might have a role to play in ovarian
cancer; and publishing the new gold standard treatment for thyroid cancer.
7
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Cancer Services at UCLH
Innovative Models of Care and Patient Experience
2.21.
Our new Cancer Centre opened in April 2012 and has won four awards for its design and contribution to improving cancer patient experience. We were
delighted to have an inaugural visit to these fantastic facilities by Their Royal Highnesses the Prince of Wales and The Duchess of Cornwall. One of the
most exciting features of the cancer centre is the innovative use of art work, which has been shown to have many positive therapeutic and medical
outcomes for cancer patients. Coupled with the opening of a new patient hotel, which offers free accommodation to our patients and close relatives when
they need it, we believe we are offering some of the most advanced cancer services in the UK.
2.22.
Jeremy Hunt, Secretary of State for Health, recently acknowledged the quality of our cancer services and facilities on the NHS documentary Keeping
Britain Alive:
“Just been on inspirational visit to UCLH Macmillan Cancer Centre. Courage and optimism of cancer patients truly inspirational.”
8
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
2.23.
Cancer Services at UCLH
UCLH offers a personal service to each cancer
patient.
Each
patient
will
receive
a
personal
treatment plan, a key worker to support them and
their families throughout the pathway and full Clinical
Nurse Specialist (CNS) support at all stages of their
journey. In addition, the Macmillan Support and
Information Service, based in the Cancer Centre,
offers the benefit of a listening ear, a wide
programme of activities to help cancer patients and
to help them help themselves, and comprehensive
patient information and advice. A variety of volunteer
roles in the Cancer Centre further enhance the
patient experience at all stages of their pathway.
9
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Cancer Services at UCLH
Our Commitment to Working with Patients
2.24.
UCLH is committed to involving patients in helping us design and develop services. With the help of Macmillan Cancer Support, we have established
a Cancer Patient Experience Board which is actively involved in all of our decisions about developing and designing services. Juliet Bouverie, Chair
of this group and a member of our Cancer Clinical Steering Group has commented:
The Patient Experience Board at UCLH provides a real opportunity for patients to help UCLH improve services to cancer patients. We have
been impressed by the openness of the senior management team at UCLH to listen to views of patients and carers. I attend the Cancer
Clinical Steering Group with one other patient member of the group and participate in all of the key strategic decisions, while members of
the group are involved in a wide range of projects, co-design, and improvement work across the Trust.
2.25.
We have also worked with London Cancer to ensure that patients are involved in designing wider pathways of care. Ben Wilson, a student from Watford,
was diagnosed with Acute Lymphoblastic Leukaemia (ALL) when he was 17. He understands how it feels to be a teenager having regular treatment for
cancer;
“I was asked to join the Teenager and Young Adults Cancer Network Coordinating Group by Dr Rachael Hough, who was my consultant at
University College Hospital in London and chair of the group, in 2012. I thought it sounded like a great idea and wanted to get involved. I’m
able to discuss issues that really affect teenagers. I’ve raised things that haven’t been talked about before such as sexual health advice and
information for teenagers with cancer. Other things like hospital food, exercise and getting back to school are really important to us as
patients. Having the right information and support can help us continue to lead normal lives. At first, it was slightly intimidating to be in a
room full of people who are leaders in their field. But they all take time to listen and my confidence has grown. I do believe our views will
make a difference. It’s fascinating being behind the scenes. Knowing my contribution will help improve the situation for patients following
behind me is really reassuring. “
10
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Cancer Services at UCLH
Our Commitment to Partnership Working
2.26.
Our commitment to the vision of London Cancer is matched by our commitment to work in partnership with the other organisations across UCL partners to
achieve this vision. We believe that joint consultant appointments between Trusts are an important driver of effective joint working, as these consultants
can operate as full members of the specialist cancer services at UCLH and the cancer services at local units, ensuring that innovations in improvements
in treatment are delivered locally wherever possible. There are joint appointments in neurology between Queen Square and many hospitals in North
London. We have pioneered joint appointments in medical oncology (with Barnet & Chase Farm Hospitals), in haematology (with North Middlesex
University Hospital and Barnet & Chase Farm Hospitals, and Whittington Hospital) and in urology (with Barnet & Chase Farm Hospitals, the Royal Free
Hospital (RFH), and the Barts Health group of hospitals) and we would introduce more joint consultant appointments in other specialties as the plans for
Brain and Spine Cancer Services are developed.
Our Capacity to Deliver
2.27.
As an established Foundation Trust, with a successful financial track record, we have a reputation for delivering major projects and improvements within
the NHS. We opened the award-winning Cancer Centre on time and on budget in April 2012. We successfully took on management of the Royal National
Nose Throat and Ear Hospital (RNTNEH) from the RFH at the same time. We opened one of the first Hyper-Acute Stroke Units at University College
Hospital in 2010 as part of the major reform of stroke services in London, which is estimated to have saved 400 lives per year. We completed the transfer
of brain and spine cancer services from Royal Free Hospital to UCLH in 2011 and 2012. We also co-operated fully with the transfer of specialist hepatobiliary cancer surgery to the Royal Free Hospital, when it was agreed that this provided the best model for improving these patient services.
2.28.
The development of Cancer Services at UCLH is co-ordinated by our Cancer Clinical Steering Group, chaired by Dr Geoff Bellingan, Medical Director for
Surgery and Cancer. Three Executive Directors, including Dr Gill Gaskin, Medical Director of the Specialist Board, attend this group together with the
Trust senior cancer clinical leadership. The membership includes two clinicians who chair National Clinical Reference Groups on specialist cancers for
NHS England, and further five clinicians whose expertise and leadership skills have been acknowledged by their appointment as Pathway Directors for
London Cancer. All parts of UCLH are represented on this important group, together with representatives from our Patient Experience Board. This group
ensures a co-ordinated approach to the delivery of improvements in cancer services across UCLH, including the proposals put forward in this document
for Brain and Spine Cancer. This overall commitment by UCLH to the provision of excellent specialist cancer services is matched by the specific strengths
of UCLH which make us best placed to deliver the highly specialised services for brain and spine cancer; as described further in the following chapter.
11
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Brain Cancer Services at UCLH
3.
Brain and Spine Cancer Services at UCLH
3.1.
Queen Square is the UK’s pre-eminent Centre for Clinical Neuroscience and research, providing accommodation for the National Hospital for
Neurology and Neurosurgery (NHNN) and the UCL Institute of Neurology (IoN). Together these organisations provide an unrivalled critical mass of
clinical and research excellence that spans the entire translational pipeline from world class discovery neuroscience to high quality patient care and
outcomes. Over the next 20 years the Hospital’s and the Institute’s aim to deliver ambitious clinical and research strategies will drive the translation of
excellent science allowing the treatment of more adult and adolescent patients than ever before.
3.2.
Queen Square is the largest division of UCLH. Over 130,000 neurological patients are assessed and treated each year and over 10,000
neurosurgical operations are performed. It employs 1500 staff and it is the largest adult neuroscience hospital in the UK. The Brain and Spinal
Tumour Service is managed by the Queen Square Division which coordinates the delivery of neurology and neurosurgery care at the NHNN. The
Cancer Services Division at University College Hospital coordinates the non-surgical oncology care. As a national centre of excellence the NHNN
receives referrals from all over the country. Over the last three years there has been a significant expansion of the brain and spinal tumour service
with the amalgamation between the existing NHNN/UCLH service and the RFH neuro-oncology MDT.
3.3.
As part of the amalgamation of the NHNN/UCLH and RFH service, the skull base service at RFH was transferred to the NHNN site in 2010. The
resultant skull base service at NHNN has grown to become one of the leading such services in the UK with further expansion based on the more
recent transfer of skull base and pituitary services from Barts Health NHS Trust: This is now the largest skull base neuro-oncology and pituitary
service in the UK. The primary aim of transferring the services was and remains to improve the quality of care to patients with skull base and pituitary
tumours by centralising services and expertise into one centre.
3.4.
The transfer of the RNTNEH in 2012 from the Royal Free to UCLH, under the leadership of Professor Saeed as the Clinical Director of the RNTNEH
has further enhanced the clinical and extensive expertise and experience offered to patients in skull base surgery.
3.5.
In May 2011 the RFH neuro-oncology team were fully integrated into the service with the transfer of high grade gliomas, meningiomas, metastases
and low grade gliomas. Finally, the intracranial and emergency neurosurgery moved over in 2012 and all spinal work moved over in 2013.
12
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Brain Cancer Services at UCLH
Clinical Activity at NHNN
3.6.
The increase in the level of workload over the last few years has resulted in the need for several multi-disciplinary meetings to be held at NHNN. As
well as the main neuro-oncology MDT there are separate MDTs for pituitary, skull base and spinal tumours. The core team of the main neurooncology MDT is made up of six neurosurgeons, two neurologists, three neuroradiologists, two clinical and one medical oncologist, two
neuropathologists, three clinical nurse specialists, specialist AHPs, a senior clinical neuropsychologist, a palliative care consultant, clinical nurse
specialist and an MDT coordinator. All patients are considered for entry into Clinical Trials and the key worker is documented at the MDT.
3.7.
Many of the patients discussed at the MDTs have been referred from local hospitals within North London, West Essex, Hertfordshire and South
Bedfordshire. Due to the national and international reputation of NHNN there are also patients referred for second opinions from all over the UK and
abroad.
3.8.
The main weekly neuro-oncology MDT discusses 30-40 cases a week. All new and recurrent intrinsic Central Nervous System (CNS) tumours,
principally gliomas and metastases, as well as meningiomas and rare tumours e.g. pineal tumours, primary CNS lymphomas and primitive
neuroectodermal tumours, are discussed with presentation of history, co-morbidities, performance status, imaging and pathology. Patients are
presented prior to surgical intervention (except emergency cases), after histological diagnosis, at progression or where a second opinion has been
sought. The MDT management plan is recorded by the co-ordinator and fed back after the meeting to the relevant teams. In addition, tumours
presenting in teenage and young adults (ages 13-19 years) are presented by the paediatric oncologists at UCH, usually at the beginning of the
meeting
3.9.
The majority of patients discussed at the pituitary MDT have benign pituitary tumours. The majority of patients discussed at skull base MDT have
vestibular schwannomas, meningiomas and paragangliomas which are benign tumours. Other tumours discussed include clival chondrosarcomas
and chordomas. The patients discussed at the spinal MDT include those with metastatic spinal cord compression as well as intrinsic spinal tumours
both intradural and intramedullary e.g. astrocytomas, ependymomas and schwannomas.
13
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
3.10.
Brain Cancer Services at UCLH
There is some overlap in core membership across all the MDTs. Dr N Fersht, Consultant Clinical Oncologist, attends all four MDTs. Altogether
across all the MDTs, the service has grown year on year and in 2011/12 there were over 600 surgical cases discussed as well as those patients who
were managed conservatively as outpatients. In 2012/2013 the discussions of surgical cases reached had grown to over 750. There is an increasing
numbers of patients being referred or treated at NHNN. There is an increase in the number of overall caseload going through the MDTs including
follow ups, post-operative and external films. Across the brain, skull base and pituitary MDTs in the first quarter of 2013, 700 cases were discussed.
There is one further MDT called the Cancer Network MDT that discusses non-surgical and supportive care and rehabilitation needs of the patients
Brain and Spine Cancer Facilities and Services
3.11.
The neuro-oncology service has access to the full range of treatment options across NHNN and UCLH, which ensures that the patient and clinical
teams choose the most appropriate treatment option for each individual.
Treatment options range from conventional surgical treatment to
stereotactic radiosurgery, radiotherapy and chemotherapy. The importance of offering a complete range of services in the one organisation cannot
be overstated. There are clear benefits for patient experience and continuity of care, as well as clinical benefits by having multidisciplinary expertise
functioning as one unit and eliminating the risk associated with transferring patients.
14
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Brain Cancer Services at UCLH
Brain Tumour Unit
3.12.
The Molly Lane Fox Unit is the UK’s first dedicated brain
tumour unit. It was opened in January 2011 with funding
from the National Brain Appeal. The 12 bed inpatient unit
has proved to be a valuable addition to the services
provided to brain tumour patients at Queen Square as the
patients benefit from rapid assessment and treatment
thanks to the dedicated unit and multidisciplinary team that
work there, all of whom are specialists in brain tumours.
The Molly Lane Fox Unit sits alongside the advanced
neuroimaging suite, a state-of-the-art imaging facility.
Neurosurgery
3.13.
Neurosurgery at Queen Square currently offers the largest
adult neuro-oncology service in the UK.
The volume of
cases creates a critical mass of expertise that enables
Neurosurgery to provide a flexible and comprehensive service in all areas of neuro-oncology surgical techniques including awake craniotomy, the
use of Gliolan, and the insertion of Gladial wafers.
3.14.
Queen Square opened the first Interventional Magnetic Resonance Imaging (iMRI) unit in the UK in 2008, and is currently still only one of two
available in the UK. As the extent of surgical tumour removal is one of the most important factors in the prevention of recurrence and survival, the
benefit of being able to use MRI scanning during the operative procedure to ensure total resection of the brain tumour, while preserving brain
function, is of immense value.
3.15.
The Neurosurgical team at Queen Square embrace and are supported as early adopters of technology to aid the surgeon in achieving the best
possible outcomes for each individual patient. In addition to the iMRI facility, neurosurgeons have access to intraoperative continuous ultrasound.
15
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
3.16.
Brain Cancer Services at UCLH
All patients requiring Gamma Knife treatment will be treated at Queen Square Gamma Knife Centre which has been operational since October 2012.
Gamma Knife is a radiosurgery treatment that has a number of benefits over invasive surgery for identified patient groups. The main use of Gamma
Knife treatment is in cerebral metastases (referred from our specialist cerebral metastases MDT clinic) and skull base meningioma, especially
acoustic neuromas. All candidates for Gamma Knife treatment are discussed at a Gamma Knife MDT prior to referral for treatment. This MDT
includes our specialist team of neurosurgeons who operate in Gamma Knife, a clinical oncologist and a medical physicist. Research within neurooncology Gamma Knife treatment is a key objective of the Gamma Knife service. It is intended that every patient referred for Gamma Knife treatment
will be part of a research trial, with patient consent and there is a research portfolio being built up around Gamma Knife.
3.17.
Being the largest service in the UK is also vitally important in maintaining surgical skills of current surgeons and for the training of future surgeons,
which has always been an integral part of the organisation. As an example of our commitment to education and training neurosurgery provide a
yearly neuro-oncology course for consultant Neurosurgeons, a course which has an international reputation. The NHNN also host a yearly surgical
skills course for intracranial techniques for trainees and there are weekly educational programme for junior surgeons.
3.18.
The NHNN Neurosurgery Department do not operate on trauma or paediatric cases and a large amount of their workload is focused on neurooncology surgery. Skull base, pituitary and complex spine oncology are operated on by a specific number of named surgeons. Cranial neurooncology is part of the on-call commitment and over 80% of neuro-oncology comes through the acute (emergency) service. For this reason the team
at NHNN are focussed on the quality and complete commitment to the neuro-oncology surgeons in providing a whole service joint with the neurooncologists and working pro-actively as part of the multi-disciplinary team.
3.19.
All of the neurosurgeons who operate on cancer are core members of the neuro-oncolgy MDTs. They show their commitment to neuro-oncology
through case load, education, research, attendance at mortality & morbidity meetings and close working with the oncologist s including regular joint
clinics.
16
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
3.20.
Brain Cancer Services at UCLH
This multi-disciplinary way of working can be demonstrated by the complex and specialist clinics run jointly by the surgeons and oncologists. There
are several weekly clinics where the oncologist and neurosurgeon see patients together to ensure the highest standards of patient care. Dr Naomi
Fersht and Mr Neil Kitchen run the brain metastases service, for the aggressive management of good performance status patients with brain
oligometastases, in the setting of minimal extra-cranial disease. Patients are considered for Gamma Knife radiosurgery or surgical resection of their
brain metastases. This was set up six years ago and was the first such service in the UK.. The service recieves referrals from within UCLH and all
over London as well as offering second opinions to patients from other centres in the UK. The clinic also sees selected primary brain tumour patients
that would greatly benefit from a joint consultation.
3.21.
Mr Robert Bradford, Mr Lewis Thorne and Dr Elena Wilson run a weekly joint neuro-oncology clinic at the NHNN seeing primary brain tumour
patients. Dr Paul Mulholland is joined in his weekly chemotherapy clinic in the Macmillan Cancer Centre by Mr George Samadouras. Dr Jeremy
Rees and Mr Andrew McEvoy run a joint low grade glioma service. The pituitary team run their weekly clinics in adjacent rooms at NHNN, to ensure
the patients have access at each appointment to a joint consultation with their surgeon ( Miss Joan Grieve or Mr Neil Dorward), their oncologist (Dr
Naomi Fersht) and Endocrinologist (Dr Stephanie Baldeweg or Prof Pierre Bouloux) when required.
Intensive Care Unit
3.22.
Neuro-oncology services at UCLH are supported by excellent neurocritical care facilities at the National Hospital for Neurology and Neurosurgery.
There are currently 20 neurocritical care beds are 14 level-3 and 6 level-2, with ability to flex the level-2 beds to level-3 at times of high demand.
There are also plans to increase total neurocritical care capacity to 24 beds in the next 18 months. Clinical management is guided by
comprehensive, locally developed clinical protocols that are based on current evidence and expert consensus guidance.
3.23.
In addition to standard critical care facilities, each bed is equipped with state of the art intracranial monitoring facilities to allow optimal management
of intracranial physiology and pathophysiology in post-operative and brain injured patients. Nurse staffing levels meet national standards and bedside
nurses are supported by two clinical educators and a clinical nurse specialist, as well as team leaders and the nurse in charge. 24 hour medical
cover is provided by dedicated resident trainees or clinical fellows supervised by consultant neurointensivists. There is also dedicated physiotherapy
and speech and language therapy cover allowing early and proactive rehabilitation, and daily input from specialise dieticians and pharmacists. Daily
consultant medical microbiology ward rounds support prudent antibiotic management.
17
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
3.24.
Brain Cancer Services at UCLH
The unit contributes to the ICNARC dataset with excellent audited outcomes. The neurocritical care unit performs well when compared to all audited
ICUs and to the other, small number, of dedicated neurocritical care units that contribute to ICNARC. For example, unit mortality rate is lower than
predicted based on case-mix (the second lowest of dedicated neuro ICUs), post-discharge mortality islower than average, the number of transfers
out for non-clinical reasons is also lower than average, and in-unit MRSA acquisition rates are in line with the national average despite the known
higher infection risk in brain-injured patients.
Neuroradiology
3.25.
Imaging is central to establish the diagnosis, plan the surgery and
follow up patients with tumours The Clinical Lead for the imaging
service is Professor Tarek Yousry. He is both Head of Division of
Neuroradiology & Neurophysics at UCL Institute of Neurology and
Head of the Lysholm Department of Neuroradiology, NHNN/UCLH. He
was fundamental in setting up the unique space at NHNN where
neuro-imaging and neurosurgery sit side by side. Under his leadership
the Department achieves a high throughput, a fast turnaround in the
reporting of studies and strong audit and outcomes. The department is
also the largest Neuroradiology training centre in the UK.
3.26.
The Lysholm Department of Neuroradiology at NHNN / UCLH, has
been at the forefront of delivering a timely, comprehensive imaging
service based on advanced imaging in patients with CNS tumours. The
department has four MR scanners, two of which are 3T, and two are
1.5T scanners. One of the latter is in an operating theatre within the
Department, allowing intraoperative MR imaging (iMRI). The imaging is
supported by five clinical scientists, who ensure that the highest quality
is maintained and that new techniques are swiftly introduced in the
clinical environment.
18
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
3.27.
Brain Cancer Services at UCLH
When establishing the diagnosis, determining the grade of the tumour can be of central importance to the future management of tumours such as
low grade gliomas. Based on the results of our previous ground-breaking research which demonstrated that an increase in blood flow predicts
transformation to a more malignant tumour grade much earlier than conventional MR Imaging, we introduced blood flow measurement (MR perfusion
imaging) into the MR surveillance protocol of low-grade gliomas. This is one example of our track record in conducting research, relevant to patient
management and leading to changes in clinical practice. Similarly, we are now in the process of implementing and comparing a number of MR
perfusion methods. One of these very promising methods, arterial spin labelling (ASL), assesses blood flow without intravenous contrast injection.
We are one of the few centres worldwide to perform such a comprehensive clinical testing. This will lead to improved accuracy in predicting tumour
grades and treatment response that will help differentiating tumour progression from other entities such a radiation necrosis or an inflammatory
reaction called ”pseudoprogession”, a frequent diagnostic dilemma in early post therapy imaging of glioblastomas.
3.28.
MR imaging is now central to planning surgeries. This can be improved by visualising structures involved in important functions, such as hand
movement or language, using specialised techniques such as fMRI and DTI tractography. Determining the precise location of these structures helps
increasing the resected tumour volume while decreasing the associated morbidity and the recurrence rate. We were one of the first departments to
introduce and provide a consistent clinical fMRI and DTI service in the UK.
3.29.
Similarly, our department was the first to introduce an Intraoperative MRI in the UK, thereby providing a unique opportunity to obtain updated
radiological anatomical information as surgery proceeds. In a neurosurgical context such facilities are available at only a very few centres worldwide,
placing the NHNN in an excellent position to take a lead in the exploitation of this technology for the direct benefit of our neurosurgical patients.
3.30.
We are also supporting a number of clinical trials of experimental drugs. Our institution has been leading the development of the appropriate MR
imaging protocols. This also applies for the research programmes related to the newly installed Gamma Knife, in which imaging is taking a leading
role, taking advantage of the recent installation at UCLH of the only PET MR facility in the UK. This very promising technology allows simultaneous
acquisition of high quality structural MR imaging and molecular information from a number of tracers, making it no longer necessary to perform two
separate studies (i.e. a PET CT and a separate high quality MRI)
19
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Brain Cancer Services at UCLH
Neuropathology
3.31.
The clinical lead for the Neuropathology department is Professor Sebastian Brandner. He is Professor and Chair of Neuropathology and Honorary
Consultant Neuropathologist for the Division of Neuropathology, The National Hospital for Neurology and Neurosurgery and Department of
Neurodegeneration, UCL Institute of Neurology. Professor Brandner holds many roles relating to brain tumours including since 2004: Member of the
British Neuro-oncology Society Council, since 2012: Member of “London Cancer” pathway board, since 2012: Peer reviewer in the National Cancer
Peer Review Programme (neuro-oncology), since 2013: Member of the Clinical Reference Group Brain Tumours (Chair Dr P Grundy, Southampton)
and since 2013: Brain Tumour CSG Translational Sub-group (Chair Peter Collins).
3.32.
Professor Brandner delivers substantial levels of both clinical and
research and development activity relevant to brain tumours. Diagnostic
Neuropathology reporting activities (2012 numbers): Brain tumours (360),
Molecular tests of brain tumours NHNN (200), Molecular tests of brain
tumours (referrals nationally) (120), Cytology of the Cerebrospinal fluid
(200).
3.33.
Under his leadership the Neuropathology department delivers top quality
neuro-oncology diagnostic services whilst meeting all critical key
performance indicators, including full intra-operative cover during
weekdays, turnaround times and MDT cover. Some of the services, e.g.
molecular pathology are leading in the UK and provide extensive,
clinically relevant molecular profiling of high grade and low grade gliomas,
thus greatly facilitating identification and inclusion of patients into clinical
trials.
20
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
3.34.
Brain Cancer Services at UCLH
Other strongly performing key areas include turnaround times that fully meet the new 2014 targets recommended by the Royal College of
Pathologists for surgical pathology specimens (2014 Guidelines 95% in 7 working days), molecular pathology, all high and low grade gliomas
routinely tested for 1p/19q, 10q, EGFR amplification, IDH mutation and all high grade gliomas also for MGMT Methylation. Selected low grade
gliomas tested for BRAF fusion genes.
3.35.
Professor Brandner was also responsible for establishing a brain tumour bank at Queen Square in 2009. This resource which now contains 400+
banked gliomas and 80+ cell lines is highly sought after and contributes to the UCL-CI strategy of strengthening brain cancer. Research grant
funding from “The Brain Tumour Charity” for experimental model systems. High impact publication on experimental and translational model systems.
Publication of clinically relevant audits resulting in service improvements. The brain tumour bank has fostered internationally competitive
collaborations across UCLP and beyond, leading to publications in the best Cancer Journals and significantly contributing to the UCL-CI strategy of
strengthening brain cancer.
3.36.
The Queen Square Neuropathology department in partnership with Barts Health Neuropathology and GOSH Paediatric neuropathology, is now the
pan-London provider of Neuropathology postgraduate clinical training.
Radiotherapy
3.37.
The world class Radiotherapy Department at UCLH is equipped with the latest radiation technology including five Varian Linacs, four with on-board
imaging facilities and each with multi-leaf collimation and portal imaging.
3.38.
The Department delivers a wide range of specialist and state of the art treatments utilising all aspects of modern radiation technology (including on
board imaging, portal imaging and anatomy matching, multi-leaf collimation, AdvSim and MRI/PET/CT image fusion). The Department provides
intensity modulated radiotherapy, and was the first centre in the UK to establish RapidARC IMRT for brain tumours. RapidArc is a form of volumetric
arc therapy which provides a quicker way to deliver an IMRT plan, with a lower whole body radiation dose. We are currently developing a RapidArc
IMRT technique for cranio-spinal irradiation, and also stereotactic RapidArc IMRT for brain tumours.
3.39.
The UK’s first Varian Truebeam Linear Accelerator was installed at UCH and the first patients were treated in September 2011. They were all brain
cancer patients. The Truebeam is the world’s fastest and most accurate linear accelerator. We treat approximately 2000 patients a year and are one
of the largest departments in London.
21
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
3.40.
Brain Cancer Services at UCLH
When delivering adjuvant therapy to patients with high grade brain tumours, the department will know that the time between surgery and
radiotherapy is an important factor in determining length of survival. There is considerable clinical trial data looking at the time to radiotherapy
following surgery for Glioblastoma (WHO Grade IV). The recommendation is that patients with Glioblastoma should start their radiotherapy no later
than six weeks post-operatively. A recent audit carried out by London Cancer has shown that UCLH meets this standard. However, we are
continually striving to be even better, and to also ensure that all patients receive the same high level of service.
3.41.
MRI fusion is now standard for RT planning of brain tumours, MRI data is fused with the radiotherapy planning CT data and used to help define the
tumour and critical structures, as shown below:
22
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Brain Cancer Services at UCLH
Proton Beam Therapy
3.42.
In April 2012, the Department of Health announced that UCLH would host one of
the first two high-energy PBT centres in the U.K. with central government
funding of £125 million for each centre. Along with the Christie Hospital in
Manchester, the UCLH PBT centre will apply the highest possible technical
radiotherapy service to specific specialist patient groups who will benefit from
this intervention. One of the main advantages of PBT, compared to standard
photon beam radiotherapy, is the ability to dose escalate close to critical
structures. This is of great importance when the dose required for tumour control
greatly exceeds the tolerance of the surrounding brain and spinal tissues.
Currently, adult patients with spinal and base of skull chordoma and
chondrosarcomas are sent to the United States for PBT, allowing the high doses
required for progression-free survival to be delivered whilst reducing the risks of
serious toxicity to critical structures. We are looking to expand the adult brain
tumour indication list for PBT for when the centre opens at UCLH. We are
currently carrying out dual radiotherapy planning studies (PBT versus Rapidarc
IMRT) looking at target dose achievability, conformality and homogeneity, and
dose to critical structures.
3.43.
The UCLH PBT Centre will be developed in close proximity to the Cancer Institute and UCH Macmillan Cancer Centre and will consist of an
accelerator and up to four treatment rooms. The exact specification of technology and vendor will be finalised over the next 12 months and the new
service will open in 2018. At UCLH, the proton and conventional radiotherapy services will be a single integrated Department at UCLH. All patients
treated with proton beam therapy will be defined within clear protocols and enrolled into a prospective programme of evaluation and outcome
tracking to provide further evidence of the effectiveness of proton therapy. The Centre will increase significantly our research and clinical care
capabilities for brain tumours, in collaboration with existing research in imaging, nuclear medicine, physics and brain tumours.
23
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Brain Cancer Services at UCLH
Chemotherapy
3.44.
The delivery of chemotherapy treatment is a multi-disciplinary service requiring expert medical, nursing and pharmacy input as well as administrative
support. Chemotherapy has a role to play in the multi-modality management of brain cancer. These therapies are delivered with close support from
hospital and community specialist nursing and palliative care teams. Currently chemotherapy for the Brain Cancer Service at UCLH is prescribed by
two clinical and one medical oncologist. It is a consultant-led service using an electronic prescribing system to reduce prescription errors and
improve chemotherapy governance. Peer reviewed chemotherapy algorithms have been agreed in UCLH, with detailed protocols in place, to guide
high quality evidence-based chemotherapy use and to ensure patient centred care. The Macmillan Cancer Centre hosts the UCLH chemotherapy
day unit where the majority of brain chemotherapy regimens are delivered. Chemotherapy is usually delivered on an outpatient basis in the Cancer
Centre, but can be administered on the oncology wards if the patient is required to be admitted. There are updated protocols for indications and
delivery of chemotherapy which falls under the remit of chemotherapy governance of UCLH. A specialist nursing team supports the delivery of
chemotherapy to in-patients when required.
3.45.
It is proposed that individual patient cases would be discussed within the specialist MDMs at Queen Square, where oncology input and guidance
about eligibility to clinical trials running within London Cancer centres would be available. Complex early phase or molecular-focused trials running at
UCLH would be offered to all eligible patients from throughout London Cancer and other networks.
Clinical Neurology
3.46.
The neurology service for the Brain and Spinal Tumour Unit is lead by Dr Jeremy Rees, assited by Gary Hotton, who are both core members of the
Neuroscience MDT. The service provides:
Diagnosis and management of patients referred through Primary Care on the “2 Week Wait” pathways.
Management of Brain Tumour Associated epilepsy.
Active monitoring of patients with Low Grade Gliomas (LGG). Dr Rees has evaluated new protocols in the imaging of patients with LGG
and has incorporated advanced techniques to detect early malignant transformation of LGG. This has attracted patient referrals nationally
Diagnosis and Management of paraneoplastic neurological disorders and neurological complications of cancer.
24
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Brain Cancer Services at UCLH
Diagnosis and Management of Neurotoxicity caused by treatment of cancer.
Transitional service for young adult survivors of childhood brain and spine tumours.
Inpatient consultations to the cancer Division and Teenage and Young adult service.
3.47.
In addition, Dr Rees organises the pan-London Neurology SpR training in neuro-oncology, lectures undergraduates, postgraduates and
neurosurgery, oncology and palliative care trainees in neuro-oncology.
The Clinical Nurse Specialist team
3.48.
The Clinical Nurse Specialists at the NHNN have extensive neuro-oncology experience; all patients with brain tumours at NHNN and UCLH have
access to a CNS throughout their care pathway. The Clinical Nurse Specialist is the patients single point of access to the Brain Tumour service at
UCLH and they offer information, advice and support to patients diagnosed with a brain tumour as well as their carers. Their role also includes triage
of clinical symptoms, to titrate patients’ medication under direction of the medical team, providing patient specific information, clarifying the patients’
brain pathway and supporting their social, emotional, cognitive, psychological needs.
3.49.
The Clinical Nurse Specialist also co-ordinates the patient’s care in the patient’s preferred place of care. The Clinical Nurse Specialist and Macmillan
Support worker are also supported by the administrative staff of the Brain Tumour Office. Out of hours the clinical nurse specialists hand over to the
24/7 oncology help line. This is a service for all cancer patients provided by UCLH cancer division.
25
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Brain Cancer Services at UCLH
The Neuro-rehabilitation Team and Services
3.50.
Neuro-oncology patients at NHNN have access to rehabilitation throughout their care pathway. This therapy team has specialist neuro-oncology
skills and experience. All qualified members of the therapy team have been trained in advanced communication skills and have additional post
graduate training in specific skills needed when treating neuro-oncology patients. The therapy team has direct links with Clinical Nurse Specialists,
palliative care consultant, discharge co-ordinator and neuro-psychology services and has developed excellent working relationships with local
hospices to utilise and facilitate patient and carer access to their services. The team provides advisory service to other therapist and specialist teams
at UCLH and to referring hospitals and teams.
3.51.
In-patients specialist services include;
Pre-surgical assessment – Baseline physical, cognitive, communication and nutrition assessment, in order to identify expected needs
over the course of their admission.
Post-surgery all patients will either be assessed by the therapy team or if no deficits are evident they will be screened by the rehabilitation
assistant.
Direct therapy input and feedback to Neuro-oncology Network MDT meeting to assist patient management, discharge planning and
ensure access to rehabilitation
All patients (both in-patients and outpatients) have access to;
o
Specialist seating clinic
o
Vestibular Rehabilitation
o
Spasticity team
o
Vocational Rehabilitation
o
Neuro-rehabilitation team
o
General outpatient services (PT, OT, SLT)
o
Orthotics and FES
o
Specialist Tracheotomy team
26
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Brain Cancer Services at UCLH
Discharge Planning: All patients will be assessed for their ongoing community needs e.g. Package of care, continuing healthcare funding,
access to nursing and respite facilitates. These referrals are made in conjunction with Nursing teams, palliative care, discharge coordinator and Clinical Nurse Specialists.
All patients are assessed for their on-going rehabilitation needs. Timely and appropriate referrals are made to rehabilitation centres and
community rehabilitation services. Through extensive experience in this area the team have developed a wide spread knowledge and
working relationships with local rehabilitation services.
Physiotherapy specific specialist skills/services include bobath concept and plinting
Occupational Therapy specific specialist skills/services include; splinting, AMPs assessment and direct liaison with Neuro-psychology
Speech & language Therapy specific specialist skills/services include; videoflouroscopy clinic, FEES Services, Specialist access to ENT
and awake craniotomy pre, intra and post-operative assessment
The Palliative Care Team
3.52.
Neuro-oncology palliative care is a unique service nationally. It is led by a dedicated neuro-oncology palliative care consultant, Dr Jane Neerkin.
Patients can be referred to the service anytime during their disease trajectory and may be seen on first presentation, for ongoing support throughout
their illness, at relapse or for end of life care. Patients are seen at both NHNN and UCLH and there is a dedicated neurooncology palliative care
clinic. There is a visiting 24 hour on-call service providing urgent assessment of new referrals and review / advice for existing patients with unstable
or deteriorating symptoms for inpatients and local patients within our catchment area. The team works very closely with the neurosurgeons, neurooncologists and allied health professionals, as well as working very closely with the community teams. It is a true model of excellent integrated care.
3.53.
A holistic approach is taken in addressing not just the physical, psychological, spiritual and social needs of the patient but that of the carers. This
service receives feedback from patients and bereaved relatives is uniformly positive (96% respondents rating the service as good or excellent). The
service ensures the patient dies in their preferred place of care in over 80% cases.
27
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
3.54.
Brain Cancer Services at UCLH
The service takes a strong lead in education across all health care professionals. This includes teaching regularly to all staff, having new nurse
starters from Molly Lane Fox Unit and student nurses shadow team members and organising a national study day of neuropalliative care at Queen
Square. The service has developed several pathways to improve patient care including the rapid discharge home to die pathway as well as the
integrated care pathway.
3.55.
The Palliative Care Team work very closely with the UCL Marie Curie Research Consortium and has completed its first piece of research looking at
Healthcare professionals views of advance care planning in patients with high grade gliomas. The future aims will be to build on the service currently
provided and carry out more research. There is also a plan to develop some treatment guidelines for conditions such as preventing osteoporosis in
brain tumour patients on long term steroids and managing seizures at the end of life.
The Brain Tumour Unit Office
3.56.
Based at Queen Square, the Brain Tumour Unit Office acts as a central ‘hub’ and supports the specialist clinicians, clinical nurse specialists and
allied health professionals within NHNN and UCLH as well as being a vital contact point for all patients. The administration roles includes:
Providing a focal point of contact for brain tumour patients and referrers
Administrative preparation of the MDT meetings.
Data collection
Sending copies of the MDTM decision to the GPs and other referrers
Ensuring the GP is notified that a patient has been given a diagnosis of a brain tumour
Linking GPs to hospital clinicians if they require further advice on how to manage a patient in the community.
3.57.
The administration office will be further developed and the remit of services delivered extended to meet the on-going requirements as set out by
London Cancer. One focus will be how further support can be given to other providers and on links with the A&E departments in local hospitals.
28
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Academics at UCL Institute of Neurology
4. Academic Neurosurgery and Neuro-oncology research at UCL Institute of Neurology
4.1.
The UCL Institute of Neurology and UCL Cancer Institute are working together as part of UCL Neuroscience to support major programmes of
fundamental and translational research into neuro-oncology. The key aims of this research programme are to:
Understand the fundamental cell biology of different types of brain tumours
Use a range of preclinical animal and cellular models to identify new treatment targets and develop innovative therapy paradigms for
patients
Increase the number of patients accessing clinical trials
4.2.
The integrated close working between the UCL Institute of Neurology and the NHNN provide a nationally unrivalled environment for translation of
basic science advances into patient benefit through experimental trials. The Institute has have developed an aligned joint neuro-oncology strategy
that has allowed us to streamline our preclinical and translational research linked to clinical pathway developments to optimise patient research and
care. This has already provided increased opportunities for more neuro-oncology patients to be involved in research either through brain tissue
donation to one of the UK largest brain tumour bank, or through participation in natural history studies and clinical trials. The Institute has seen a
100% increase in patients entering both Pharma and investigator led clinical trials and natural history studies over the past three years.
4.3.
The recent transfer of Neurosurgery from the Royal Free to the Queen Square site has now provided the true critical mass of clinical expertise to
enable genuine subspecialisation within neuro-oncology, an essential prerequisite to support meaningful clinical research programmes underpinned
by large stratified patient cohorts. There have been major investments in facilities to enable clinical trials involving both chemotherapy (the new Molly
Lane Fox dedicated clinical brain tumour unit) and surgical modalities (interventional MRI and Gamma Knife).
4.4.
All of this substantial progress has enabled the UCL Institute of Neurology to develop a compelling case to appoint a new established academic
Chair of Neurosurgery at Queen Square with a £1.6m research initiation fund. This new Chair will commence in 2013 and will co-ordinate and lead
all academic neurosurgical research at Queen Square. There is also significant potential to develop a strategic academic leadership role across
UCL Partners academic health science system which includes some of London’s major teaching Hospitals including UCLH NHS FT and Barts
Health.
29
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
4.5.
Academics at UCL Institute of Neurology
Other areas of neuro-oncology research at UCL include, imaging research (Dr Rees, Dr Jager, Professor Yousry), translational research (Professor
Brandner) and basic science research (Professor Salomoni, Dr Griffiths at UCL –CI). Together all these neuro-oncology research developments will
ensure continued increase in patients accessing research programmes and experimental clinical trials.
Clinical Trials
4.6.
The NIHR / Wellcome UCLH Clinical Research Facility is a state-of-the-art facility dedicated to experimental medicine; the early phase brain cancer
clinical trials take place in this facility led by Dr Paul Mulholland. Dr Mulholland is the only medical oncologist in the UK who exclusively treats brain
cancer. He is a consultant at the National Hospital for Neurology and Neurosurgery, UCLH and Mount Vernon Cancer Centre. Dr Mulholland is also
an honorary senior lecturer at University College London and a training programme director. His doctoral research was in genomic profiling in brain
cancer at the Cancer Research UK London Research Institute. This led to his focus on developing biomarkers and targets for therapy in brain
cancer. He also runs a clinical trial portfolio of novel agents in brain cancer at UCLH and nationally.
4.7.
Under Dr Mulholland’s leadership UCLH has taken part and led in multiple studies for brain cancer. For example in glioblastoma (the most common
primary brain tumour) UCLH has recently participated in the “first in human” CRUK phase I clinical trial (IMA950) for patients with newly diagnosed
glioblastoma. UCLH were the biggest recruiters in the Astrazencea REGAL study which has been recently reported. This study investigated the role
of a novel therapy (cediranib) in relapsed glioblastoma. This study led on to the development of the DORIC study which was led from UCLH / UCL.
The DORIC study examined the role of the addition of another novel agent (gefitinib) to cediranib in relapsed glioblastoma.
4.8.
We successfully recruited to the GALA5 study. This study was led by Mr Neil Kitchen and was a surgical study examining the role of Gliolan and
Gliadel (chemotherapy wafers) in newly diagnosed glioblastoma.
4.9.
Professor Kerry Chester from UCL with Dr Paul Mulholland as clinical lead have won a pan European (FP7) grant of 5.9 million Euro This is funding
a five year programme to develop targeted hyperthermia for the treatment of glioblastoma. The therapeutic particle is being generated in the Copley
May Facility at the Cancer Institute. This complex programme is leading to a clinical trial that could only take place in the UK at UCLH. This success
story is built on the strong MDT working and the investment and foresight of UCLH to make strategic appointments. Please see Appendix D for a
full list of trials
30
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Leadership/Patient Pathway/Joint Working
5.
Delivering a New Pathway for Patients with Brain and Spine Cancer
5.1.
This section of our application outlines the leadership, pathway and joint working between UCLH/NHNN and many of our partner hospitals for
patients with brain and spine cancer and demonstrates how we meet the specified requirements of London Cancer. The parameters from the service
specification have been used in order to structure the response.
Leadership
Clinical Leadership for Neurosurgery:
Mr Robert Bradford
5.2.
Mr Robert Bradford previously held the Chair position of the Brain and CNS Tumour Board for North London Cancer
Network and is currently a board member of the Brain and Spine Pathway at London Cancer. He is also an External
Peer Reviewer for the National Cancer Peer Review Programme.
5.3.
At Queen Square, Mr Bradford is a member of the Divisional Management Team and holds the position of Associate
Clinical Director and Lead for Neurosurgery. Mr Bradford joined the team at Queen Square in 2010 (joint appointment
with the RFH), when the Skull Base Service was transferred from the RFH. Mr Bradford was the Clinical Lead for
Neurosurgery at the time and since then has played a key role in leading the transfer of the whole Neurosurgical services from the RFH to Queen
Square, completed in April 2013, and continues to be the pivotal link between the two organisations.
5.4.
The transfer of the service from the RFH and integration of staff into Queen Square has demonstrated that, in addition to Mr Bradford’s clinical
expertise and reputation as a Neurosurgeon, he has the skills and ability to drive change and provide the leadership required to bring two respected
units together to create the largest adult neurosurgical centre in the UK. This leadership continues in the day-to-day operational activities of
Neurosurgery and in the strategic direction of Neurosurgery and Queen Square Division. Mr Bradford’s unique ability in bringing the clinical body
together and leading them in the direction of what is best for the patient and service, which can conflict with the personal interests of the individual at
times, will be invaluable to what the organisation and London Cancer wants to achieve in Neuro-oncology.
31
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
5.5.
Leadership/Patient Pathway/Joint Working
Mr Bradford’s leadership skills and experience in the integration of services will see the smooth and successful transfer of the Barts Health Neurooncology Service and integration of spinal MDT’s, ensuring that service quality is maintained, or improved, throughout the transition and beyond.
Dr Naomi Fersht
5.6.
Dr Naomi Fersht has recently taken on the role of Clinical Lead for Neuro-oncology. Dr Fersht only treats primary and
secondary brain and spinal tumours using both conventional and innovative radiotherapy techniques and chemotherapy,
for which she receive referrals from all over the UK. Dr Fersht holds many roles including sitting on the National Proton
Panel and will be leading on the development of PBT for skull base tumours in the UK. Other roles include; the lead for
London Cancer non-surgical neuro-oncology, MD supervisor, Honorary Senior Lecturer at UCL and Principle
Investigator for several clinical trials at UCLH.
5.7.
Dr Naomi Fersht has a strong educational profile. She was previously the training programme director for core medical
trainees at UCLH. She attends five MDTs at NHNN, which is the basis of her close working relationships all members of
the department. This will aid and facilitate the leadership role that she is undertaking. As the new lead Dr Fersht will
take a prominent and important in the transfer of work from Barts Health
5.8.
Both clinical leads work closely with the Joint Pathway Directors of London Cancer, Drs Jeremy Rees and Mr Andy Elsmore, for three years, until
July 2013, Dr Rees was Clinical Lead for neuro-oncology at the NHNN.
Dr Jeremy Rees
5.9.
Dr Jeremy Rees is a Consultant Neurologist and Honorary Senior Lecturer in neuro-oncology. He has been the Clinical Lead of the Brain and Spinal
Tumour unit since 2010 and has now handed over this responsibility to Dr Naomi Fersht. Dr Rees has been the Brain Cancer Clinical Pathway
Director for the London Cancer Integrated Cancer System since 2011 and was joined in 2012 by Mr Andrew Elsmore of Barts Health. He is the
Treasurer of the British Neuro-oncology Society and a member of the neuro-oncology scientific subcommittee for the European Federation of
Neurological Sciences. Dr Rees has edited a textbook in neuro-oncology and contributed numerous research articles, reviews and peer reviewed
publications.
32
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Leadership/Patient Pathway/Joint Working
Patient Pathway
5.10.
Over 80% of brain tumour patients are admitted through the emergency services due to acutely presenting manner of the symptoms of this cancer.
The majority of patients will be imaged in the local hospital to make a radiological diagnosis of the brain tumour before being transferred to the NHNN
for on-going management. In some cases the patients will be discharged home and admitted for elective surgery. All new patients are reviewed in
the neuro-oncology MDT on referral to allow the discussion of the appropriate treatment options, including the delivery of best supportive care locally.
The chemotherapy and radiotherapy will be delivered in local neuro-oncology units where appropriate.
.
33
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Local Services/Transport
Joint Working
5.11.
There is a comprehensive set of locally agreed clinical guidelines and work to produce the Network guidelines was completed in March 2013. The
representative core members of this MDT participate in the pathway board meetings to ensure the guidelines are appropriate and that they will be
followed
5.12.
The following diagram represents
the current joint working practices
for neuro-surgeons, oncologists and
neurologists at the linked hospital
34
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Local Services/Transport
Spinal Surgery
5.13.
The model of care for intrinsic spinal tumours demonstrates joint working by Trusts and clear governance and quality around patient management
decisions. Patients will be discussed and managed through a single MDT at Queen Square with the specialist surgery then taking place at one of
three sites (NHNN, RNOH and Barts Heath) within the London Cancer borders.
Mount Vernon Hospital
5.14.
There is a strong joint working relationship between NHNN/UCLH and Mount Vernon. While all the specialist diagnostic (neuroradiology and
neuropathathology), surgical, neurological and local rehabilitation aspects of the service are provided at NHNN the non-surgical oncological
treatment and follow-up takes place at UCLH and MVCC. There are also strong links to both clinical and translational research within UCLH, UCL
Cancer Institute (Samantha Dickson Brain Cancer and Radiobiology laboratories) and the Institute of Neurology (neuropathology).
5.15.
Mount Vernon Cancer Network (MVCN) has an established
Cancer Network MDT (CNMDT). The purpose of the CNMDT is
to oversee the ongoing delivery of the non-surgical aspects of
the patient’s treatment plan and to help provide and coordinate
care closer to the patient’s home. The MVCN CNMDT is hosted
by the Mount Vernon Cancer Centre, (E+N) and meets on a
monthly basis, with links to UCLP NSMDT. The MVCN CNMDT
is chaired by Dr Mulholland, a jointly appointed medical
oncologist between UCLH and E+N. Core and extended
membership of
this
CNMDT
is multi professional with
representation from a neurologist, palliative care clinicians,
Allied Health Professionals who are from the three locality /
Trust areas as well as the required Cancer Centre oncology
services.
35
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Local Services/Transport
6.
Maintaining Local Access and Enabling Patient Transport
6.1.
If UCLH is successful in its application to host local and specialist Brain and Spine Cancer Services, we will ensure that patients will receive as much
care as possible locally. The services provided in local hospitals will be supported by specialist teams from UCLH and the NHNN. For those patients
who do have to travel to UCLH we will do our best to support the provision of efficient and convenient transport arrangements.
Local Services
General Practitioners
6.2.
Less than 1% of all brain cancer referrals are diagnosed through the GP route but the service appreciates how important it is for GPs to be aware of
their patient’s diagnosis and to receive support from NHNN starting at this time on an on-going basis while their patient is being treated. NHNN
ensure that the GP is immediately informed of any brain cancer diagnosis and an outline of the treatment the patient will be receiving. The GPs are
also written to by the CNSs at NHNN who give them more details of communication that has taken place with the patient as well as details of any
appointments and onward referrals and gives the GPs a contact name and number if they have any questions.
Local Providers
6.3.
NHNN supports early access to palliative and supportive services locally post-surgery. Ward nurses will make referrals to local district nurses and
social workers, the therapy team will make appropriate therapy referrals and the CNSs will make referrals to supportive and palliative care and as the
key workers will co-ordinate this complex pathway of referrals to local services. There is an appreciation that there is a limitation on these services
provided locally as resources are restricted and this is certainly an area that NHNN as the central hub working with London Cancer would aim to
engage and approve. NHNN ensure that the patient receives the on-going care they need if at the current time it cannot be provided locally as
required.
36
Improving Services for Head & Neck Cancer: UCLH Application to London Cancer
Local Services/Transport
Emergency Departments
6.4.
For over 80% of brain cancer patients the pathway starts at local A&E departments where a patient has presented with neurological symptoms.
NHNN run a 24/7 consultant led neurosurgical service that allows the A&E departments to have quick access to advice and if required transfer to
NHNN. Once a patient with a suspected brain tumour has been referred to NHNN they will then be discussed at the weekly neurooncology
multidisciplinary meeting.
6.5.
If a patient following their treatment gets re-admitted at their local Emergency Department the same access to the 24/7 consultant rota applies and in
addition there is also a 24/7 oncology rota
Education
6.6.
NHNN has worked and will continue to link with local A&E departments to educate them around the symptoms and management of brain tumours.
6.7.
The NHNN is working with London Cancer to further educate the GPs in regards to symptoms that patients will present with in order that they get
referred in a timely fashion and to the appropriate clinic. Local providers have access to the specialist CNS and therapy teams via the single point of
access, the Brain Tumour Office. The specialist teams then support the local providers on a case by case basis offering education and support. As
well as structured learning, an informal process helps improve the care provided locally.
37
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Local Services/Transport
Transport
6.8.
Our aim is that patients will only come to the specialist centre when they need to; we have opted for a model which minimises patient travel into the
specialist centre, whilst also recognising the importance for the patient of obtaining access to the best possible diagnostic and treatment options for
them. Whilst this section demonstrates the accessibility of the UCLH sites, we recognise the genuine concerns that patients have expressed about
the need to improve transport services for patients attending the Cancer Centre at UCLH. We will work with London Cancer and the Cancer
Partnership Boards to identify innovative solutions to these problems.
6.9.
UCLH is building on the UCL Partners patient transport services specification in the current UCLH review of our transport strategy in consultation with
Camden Council. As part of these discussions, we will be asking Camden Council to make available space for an increased number of disabled car
parking bays in the immediate vicinity of University College Hospital. However, in line with the transport policies of the Mayor for London and
Camden Council, UCLH will not be encouraging patients to attend outpatient appointments at UCLH using their own private transport that would
require local car parking. Public transport links to UCLH are excellent and eligible patients and families will of course continue to receive
reimbursement of their travel costs in line with national eligibility rules.
6.10.
Patients receiving specialist surgery at the National Hospital for Neurology & Neurosurgery, and its partners, will also be offered the option of hotel
accommodation overnight prior to surgery, when travel on the day of surgery is impractical. This will be at the 4-star UCLH Charity Patient Hotel (see
http://www.cottonrooms.com/) or other suitable hotels near UCLH.
6.11.
We acknowledge the need to improve the booking arrangements for cancer patients using NHS transport for journeys to the UCLH campus and back
home in order to ensure that the timing is convenient and suitable for patients and their families. This is one specific area where we will work with the
Cancer Partnership Groups on the best ways to achieve the necessary improvements.
6.12.
UCLH is currently producing an overarching travel plan policy which will govern Trust-wide measures, initiatives and monitoring over the next 5 years.
This travel plan is designed to enable the staff, patients and visitors of UCLH to make more informed decisions about their travel. We are also in the
process of assessing the quality of the existing hospital patient transport service and will ensure that patients are transported in suitable vehicles, with
appropriate standards of timeliness and comfort, equipped where required to provide appropriate levels of care.
38
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Local Services/Transport
Public Transport
6.13.
The site has extensive public transport options due to its Central London location.
Buses
6.14.
The NHNN is very well served by buses, with a number of routes being accessible from within an easy walking distance of the hospital. Between
them, these routes provide bus services across Greater London.
Underground
6.15.
The National Hospital for Neurology & Neurosurgery is located within walking distance from two London Underground stations: approximately 3
minute walk to Russell Square to the North and approximately a 7 minute walk to Holborn to the South. Between them, these stations provide easy
access to the Central and Piccadilly lines. Euston and King’s Cross underground stations are a slightly longer walk away to the North, giving access
to the Victoria, Northern, Circle, Hammersmith & City and Metropolitan lines.
Mainline Rail Services
6.16.
Euston mainline station is approximately 15 minutes’ walk away from Queen Square. The station offers frequent services on the West Coast
Mainline and London Midland to Manchester, Birmingham and Liverpool as well as long distance commuter destinations such as Tring, Milton
Keynes and Northampton.
6.17.
In addition, King’s Cross and St. Pancras Stations are a similar distance away. These stations offer frequent services on the Midland and East Coast
main lines to destinations to the north and south of London, including Luton and Gatwick Airports. Euston, King’s Cross and St. Pancras Stations all
offer cycle parking and step-free access for mobility impaired travellers.
39
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Local Services/Transport
Private Transport
6.18.
The area surrounding the Queen Square site encompasses major arterial routes, including Southampton Row (A4200),and Theobald’s Road (A401).
6.19.
Car parking in Queen Square is on a ‘Pay & Display’
basis. Parking provision at UCLH sites is very limited
but UCLH is pledging as part of the bid to support as
much care as possible to continue at local hospitals to
prevent the need to drive to the hub and when travel to
the hub is necessary to ensure that the number of
visits is limited as far as possible.
Travel Times
6.20.
The maps demonstrate the approximate travel times
by car (black text) and by public transport (green text)
to UCLH from the other London Cancer hospitals.
6.21.
It
is
appreciated
that
radiotherapy,
oncology,
outpatient clinics and chemotherapy takes place at
UCLH, details of these travel arrangements are
highlighted in Appendix E.
40
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Local Services/Transport
41
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Patient Outcomes and Experience
7.
Improving Patients’ Outcomes and Experience
7.1.
We recognise the importance of measuring and publishing information on outcomes and experience for patients within the Brain and Spine Cancer
Services and are committed to maximising and improving the experience for patients.
Audit and Outcomes
Surgical Morbidity and Mortality Outcome Data
7.2.
Since January 2012 there have been monthly neuro-oncology surgical admissions M&M meetings.
complications and death around the admission episode.
They have now reviewed 759 cases.
These meetings discuss any problems,
The mortality rate is 0.5% and the serious
complication rate is 1%. There is a 16% minor complication rate.
Audits
7.3.
The Skull Base Unit contributes to the National Acoustic Neuroma Database (submitted the most cases in the UK in 2010 and 2011)
7.4.
Neuro-oncology audits performed and presented by UCLH team:
2013: Whole brain radiotherapy in brain metastases
2013: An audit of set-up accuracy in patients receiving IMRT for brain tumours
2013: Audit of time from surgery to radiotherapy in high grade gliomas
2012: Metastatic Spinal Cord Management
2010: To measure current practice at UCLH in the treatment of metastatic spinal cord compression against the recommendations in the
NICE guidelines
2009: Set-up data from An Image-Guided Whole Cranio-spinal Axis Technique
42
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Patient Outcomes and Experience
2009: What is the value of Surveillance scanning in High Grade Glioma
2008: Audit of Prone Whole CNS Set-Up
2006: Neuro-oncology patient satisfaction survey
Patients’ Experience
7.5.
UCLH recognises the importance of both measuring and
publishing information on the outcomes and experience of
diagnosis, treatment and supportive care for brain and spine
cancer patients.
7.6.
The National Cancer Patient Experience Survey (NCPES)
2011/2012 published in August 2012, included a number of very
positive comments about this service.
7.7.
UCLH has introduced real-time surveys which are used at the
NHNN outpatients and inpatients to allow on-going feedback
about the services with the data (and responses) reviewed
regularly by the staff, as well as monthly through a Cancer
Patient Experience Programme. UCLH Chief Executive Sir
Robert Naylor has commented:
“In the wake of the Francis Report, we support the expectation of greater openness about how we are performing. This new section on
our website is just a start: over the next few months we plan to publish more detailed information about the care we provide in a way
that patients can easily understand. We want our patients to come to UCLH knowing that they are in the best possible hands”.
43
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
7.8.
Patient Outcomes and Experience
The cross-division Cancer Patient Experience Programme, that includes both staff and patients, was established in December 2012, supported and
agreed by the Executive Board. The programme coordinates action plans across four themes, identified from analysis of the survey results and to
improve cancer patient experience:
Explanation and involvement of patients in decisions – to include a greater understanding of patients understanding
Written information – to improve the quality and availability across the organisation
Emotional support – improved access to clinical nurse specialists and the roll out of SAGE & THYME training for staff
Always – some basic dos and don’ts for everyone dealing with cancer patients.
7.9.
The Programme is led by the CNS team at the NHNN. This includes not only taking forward the findings of the national survey but carrying out local
surveys and many other patient experience work-streams.
7.10.
The table below highlights some of the key questions that were asked of patients in both the national and local surveys.
2010
Local 2011
2011/12
Local 2012
Patient felt there were told sensitively that they had cancer.
71.00%
61.00%
71.00%
100.00%
Patient given written information about the type of cancer they had.
41.00%
53.00%
53.00%
72.00%
Given the name of the CNS in charge of their care.
72.00%
53.00%
92.00%
83.00%
Find it easy to contact CNS.
60.00%
41.00%
67.00%
71.00%
Got understandable answers to important questions all /most of time(CNS)
81.00%
54.00%
85.00%
91.00%
44
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
7.11.
Patient Outcomes and Experience
The CNS team review the surveys, develop action
plans and take forward initiatives that lead to
sustainable improvements in areas that matter to
patients.
For example the CNS team developed
guidelines for delivery of diagnosis for brain tumour
patients taking into account timeliness, coordination
and appropriateness. The guidelines included:
Weekly timetabling ensuring sufficient
time for each individual patient
A CNS always present when a doctor is
informing the patient of their diagnosis
Privacy in a quiet room for the patient
Ability for the family to be present
Prompt information to be given using the
Information Prescription
Information around their pathway
Planning of a holistic needs assessment
7.12.
Further patient surveys are being planned and the
possibility of setting up a Patient-assembled-Pathway for Brain Cancer to input patients’ concerns and experiences into the pathways has been
raised as a way of improving patient involvement in Cancer Pathways through the new Integrated Cancer Systems.
45
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Patient Outcomes and Experience
Other Services Provided to Improve the Patient Experience and Outcome
Neuropsychology and CNS Workshop
7.13.
Patients with brain tumours frequently experience cognitive and other neuropsychological difficulties, which are often not recognized and treated. In
order to address these, appropriate patients are invited to participate in regular workshops run by the neuropsychologist and a Clinical Nurse
Specialist, to help with management of cognitive and emotional difficulties, specifically memory problems and anxiety. This has proved to be very
popular particularly amongst the low grade glioma and meningioma patient group.
Vocational Rehabilitation Service
7.14.
The National Cancer Survivorship Initiative places work and vocational rehabilitation as a key priority for people with cancer. NHNN has been
successful in gaining funding from Macmillan Cancer Support to run a Vocational Rehabilitation service, which aims to support patients with brain
and spinal tumours in relation to their working lives, and includes supporting people in their current work, helping them change role or supporting
them when they decide to stop paid work. The criteria for referral are:
Patients over the age of 18 with a diagnosis of primary or metastatic brain or spinal tumour, who identify work as an area of concern.
Employed or have been in work within the last six months
7.15.
The team comprises an Occupational Therapist and a Neuropsychologist and support is provided by the wider NHNN rehabilitation team. A pilot
study commissioned by Macmillan was carried out from July 2010 – June 2011 and the findings have now been written up and accepted for
publication. The project was so successful that it has now been integrated into the routine operational service offered by the OT department.
Macmillan Partnership
7.16.
UCLH works in partnership with Macmillan and will develop a new project to support this bid. This will include:
Behaviour. Looking at how staff interact with patient to further improve patient experience in the MDT clinics.
Pathways. To facilitate user involvement where patient help co-design the pathways and there is specific engagement with patient from all
areas current and future.
46
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Patient Outcomes and Experience
8.
Providing the Capacity to Transform Services
8.1.
The Board of Directors of UCLH have consistently reaffirmed their support to the strategic development of specialist cancer services and
neurosciences at UCLH, and to working in partnership with London Cancer to ensure that these improvements benefit the whole population served
by London Cancer. The Board’s commitment to the development of cancer services at UCLH has been demonstrated by the opening of the £100
million University College Hospital Macmillan Cancer Centre in April 2012. The Board have made a further commitment to the development of
specialist cancer services by agreeing the Outline Business Case for our Phase 4 development, which will include the PT service, due to open in
2018.
8.2.
Similar commitment has been shown for the Neuroscience Directorate at Queen Square, which has expanded significantly in the last five years. The
Division has recently submitted a business case to the Trust to build additional capacity, which will see an additional theatre and bed capacity by April
2015. The case has been approved by the Executive Board of UCLH, and will now be presented at the Investment Committee first week of August
before it is presented at the Board of Directors for final approval in mid-August.
8.3.
The divisional management team are simultaneously working with the Trust to
develop an expansion plan for the Queen Square campus that will increase
capacity and accommodate growth for the next 20 years. The Trust has now
approved the development of an Outline Business Case to deliver a 20 year vision
for Queen Square.
8.4.
We will apply the same combination of clinical leadership and disciplined project
management to delivering the improvements in Brain and Spine Cancer Services
outlined in this document.
8.5.
The ambitious plans of the organisation to continually improve in the infrastructure
and technological environment are a reflection of the clinical drive for breaking
new boundaries. This is especially true of Neurosciences at Queen Square.
47
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Patient Outcomes and Experience
Organisational Capacity
8.6.
Providing the additional theatre and bed capacity will enable the transfer of the neurooncological surgery service from Barts Health; the plan is that this will be ready in 2015
8.7.
Queen Square has seen a growth of 79% over the last 5 years of clinical services and
research activity.
The Board supports that NHNN must remain at the forefront of
neurosciences and be the market leader in the specialty and so have approved an outline
business case to be written that will address the growth and requirements for the next 20
years.
8.8.
We will work in close partnership with the Pathway Board and other hospitals in London
Cancer throughout the implementation period, agreeing all important milestones and
decisions with them. We will provide regular progress reports to the Pathway Board to
ensure that the benefits from patient outcomes, patient pathways, patient experience, and
research and innovation in further advances in brain and spine cancer treatment are
delivered. If the proposals in this document are not accepted by London Cancer, because
alternative proposals offer greater benefits to patient outcomes, patient pathways, patient
experience, and research and innovation, then UCLH will of course co-operate fully with
other Trusts to ensure successful implementation.
Commitment
8.9.
The Neuro-oncological surgery team and the wider management team at Queen Square and UCLH believe the one centre model will provide
excellent opportunities for patients and staff, advancing the field of neuroscience.
48
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
8.10.
Patient Outcomes and Experience
Clinical engagement is a key factor in ensuring the successful integration of transferred services and achieving the aspirational service model. The
successful transfer of the Neuro-oncology and Neurosurgical services from the Royal Free London NHS Foundation Trust demonstrates the
commitment and ability of the clinical and managerial team at Queen Square to organise and implement such a change.
8.11.
The Neurosurgical management teams at Queen Square and Barts Health have had initial discussions about the Barts Neuro-oncology service
moving to UCLH. These discussions have been positive and both organisation believe that the benefits to creating a single centre for Neurooncology in London Cancer are compelling and presents a fantastic opportunity to improve the service to patients and advance the field of Neurooncology through integrated working and research.
Impact of Change
8.12.
The argument for the centralisation of specialist surgery at UCLH is compelling and would provide impact within and outside of London Cancer.
8.13.
We have considered how we will manage the changes to Brain and Spine Cancer Services that result from the proposals set out in this document.
We have addressed two different scenarios according to whether or not our application to host the local and specialist services is successful.
Impact if Successful
8.14.
If successful, we would make this a world class Brain and Spinal Cancer Service, which is embedded as part of the ambition for cancer provision at
UCLH as a whole, This includes:
Continue the dedicated neuro-surgical service supported by a specialist neuro-science centre and make this available to all London
Cancer patients
Continue the development of cutting edge technical radiotherapy techniques for brain tumours, which will then be complemented and
enhanced by the addition of proton beam therapy.
Continue to enhance the clinical trial portfolio for brain cancer, with participation in national studies and development of our own, with
support and interaction with the brain cancer research programme.
Maintaining the rapid decisions and treatments for all our patients
49
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Organisational Capacity/Impact of Change
Integrated care with all other cancer specialties and relevant surgical and medical specialties
Impact if Unsuccessful
8.15.
UCLH is committed to the development of specialist cancer services and confident in our ability to deliver both the short and the long term aspirations
for brain and spine cancer laid out by London Cancer. If we are unsuccessful this would weaken the comprehensive approach UCLH is adopting to
cancer care and so would compromise our ability to match the best cancer providers in the world. The best Brain and Spine Cancer service for the
population of North and East London relies on the correct people meeting the patient and then discussing management together to come to a
consensus.
8.16.
If unsuccessful this would undermine the UK’s premier neuroscience centre and world leading UCL research into neurosciences.
8.17.
There are no alternate proposals for those patients who are already treated at Queen Square. If UCLH is not supported to deliver our comprehensive
vision for cancer services and takes a financial loss from the transfer of neurosciences there will also be an impact on our ability to withstand
financially the transfer of cardiac services to Barts Health, as has been proposed to achieve the UCL Partners vision for both cancer and cardiac
services. Any detrimental impact on the financial health of UCLH as a whole would impact on the quality of care we are able to provide overall for our
patients.
Implementation Plan
8.18.
Due to the complexity of these patient pathways, we propose that the developments outlined in this document are made gradually and in
collaboration over a period of time allowing for full implementation in 2015. The diagram below represents an indicative timetable that would be
developed in more detail if UCLH were to be awarded with hosting the Brain and Spine Cancer Network.
50
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Organisational Capacity/Impact of Change
Figure 7-1 Indicative Programme
LONDON CANCER
J
J
A
2013
S O
N
D
J
F
M
A
Thoracic Pathw ay Board
review
London Cancer Board review
UCLP Executive Group
meeting
Public consultation
Public consultation completed
Bid submission
UCLH and BARTS HEALTH
Detailed case mix / activity
analysis
Further discussion regarding
implementation plans
Barts Transition Group
Established (monthly meeting)
Clinical governance agreed
Pathw ay protocals and SLA's
finalised
Workforce planning
completed
Barts Staff fully transitioned
Start of new pathw ay
51
M
2014
J
J
A
S
O
N
D
J
F
M
A
M
2015
J
J
A
S
O
N
D
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
8.19.
Organisational Capacity/Impact of Change
Project leadership for implementation of the new service model will be provided by Dr Gill Gaskin, Medical Director for Specialist Hospitals Board.
Clinical leadership to the project will be provided by Mr Bradford. They will be supported by dedicated management resource to deliver all stages of
the improvements outlined in this document. The Director of Strategic Development, David Probert, and his department will support this project and
ensure that progress is tracked against agreed milestones and reported to our Strategic Programme Board and Executive Board. This will ensure
that the implementation of these improvements is closely co-ordinated with improvements in other specialist cancer services and strategic changes
which we are making to our available capacity.
8.20.
As soon as the decision is taken that UCLH should host these specialist cancer services, we will set up an implementation group, and work with the
Pathway Board and local units to make immediate improvements in diagnostic services, to establish joint appointments between UCLH and local
units, to improve the referral pathway and develop information so that patients who need to be referred to UCLH for specialist services understand
the services that are offered and the support available to them, including transport details. We expect this phase to lead to immediate improvements
in the diagnosis, information, and treatment options for patients across London Cancer, even before any move of specialised services to UCLH.
Investment Requirements
8.21.
UCLH has a strong track record of investing in service developments. This document details some of the areas where investment is likely to be
required; further investment required to deliver the proposals for Brain and Spine Cancer Services will be identified during the implementation
planning phase that would follow the outcomes of the public consultation exercise.
Trust Board Commitment to Implementation
8.22.
The Board of Directors of UCLH NHS Foundation Trust has recently reaffirmed their commitment to supporting the development of world class
cancer services at UCLH working within London Cancer. This strategic commitment underlines our operational commitment to make available the
skilled medical, nursing, and other staff, and the beds, theatre sessions, outpatient space, and other resources needed to deliver the Brain and Spine
Cancer Service as outlined in the specification prepared by London Cancer.
52
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Conclusion
9. Conclusion: A High Quality Service for Patients and Carers
9.1.
We are delighted to have the opportunity to submit this tender to support London Cancer in the delivery of high quality, outcome focused Brain and
Spine Cancer Services. We believe that the pathway model presented incorporating our equally important partners across the whole of North and
East London demonstrates that UCLH is particularly well placed to deliver the local and specialist surgery and oncology services.
Capacity and Commitment
9.2.
ULCH is a successful and financially strong Trust with a proven Board level commitment to Cancer Services. We have a history of implementing
significant pathway changes to the benefit of patients and have an estates strategy which supports the development of specialist cancer work at the
UCLH site. We have a proven experience of joint working and can bring to bear the resources and depth of expertise necessary to cope with the
demands on the services, both now and in the future.
Acknowledgements
9.3.
In creating this application we would like to express our thanks for contributions from UCL academics, UCLH clinicians, managers and allied health
professionals, representatives from our partner organisations and patient representatives, who have helped to shape our proposal. We trust that our
proposals meet with the requirements of London Cancer.
53
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
Appendix A: Outline of Proposed Local Brain and Spine Cancer Unit
Part of
pathway
Presentation
Proposal
Developments necessary
All hospitals have a named lead for brain
The named leads are Mr Robert Bradford and
When the Barts Health service moves to
and spine tumours and a clear referral
Dr Naomi Fersht.
UCLH the transfer project team will ensure
High-level summary of specification
pathway to neuro-oncology centre for
suspected tumours
Referrals
will
come
through
1)
the
neurosurgery on-call team for acute referrals
(The Neurosurgical department have just
Inter-trust referrals include clinical
information, the original scan, and a
named point of contact at the referring unit
introduced an on-line acute hospital referral
that the referral pathway is communicated
effectively to all referring hospitals, both those
than currently refer to UCLH as well those
who do not.
system. This ensures that all relevant clinical
information, scans and referring clinician are
included in the referral). 2) The Brain Tumour
Unit Office 3) directly to named clinicians for
neuro-oncology
NHNN require clinical information, original
scan and a named contact for all referrals.
As part of the education and communication
Local imaging for suspected brain and
spine cancer carried out to agreed London
Cancer protocol to avoid repeat imaging
where possible
In
the
majority
are
programme that UCLH would establish, it
performed locally (often after discussion with
would ensure that imaging protocols are
the local on-call team).
There are cases
adhered to and a feedback process is in place
currently where imaging is insufficient and
to learn from any deviations from this agreed
necessitating further scans at NHNN.
protocol.
54
the
correct
scans
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of
pathway
Chemotherapy
High-level summary of specification
Appendices
Proposal
Developments necessary
Delivered only by oncologists with a
Dr Paul Mulholland, Dr Fersht and Dr Wilson
specialist interest in neuro-oncology
deliver all the chemotherapy at UCLH (Dr
Mulholland at Mount Vernon). They all have a
specialist interest neuro-oncology.
Treatment follows recommendation of the
MDT and agreed London Cancer
This is the current practice at both UCLH and
will continue to be so
guidelines
Follow-up
Follow-up of brain and spine tumour
All follows up are seen and managed by their
patients managed by an experienced team
treating neuro-oncologists.
trained and supported by the neurooncology centre
Surveillance imaging takes as determined by
Performs surveillance imaging as
determined by the MDT
the MDT and is acted on in accordance with
the London Cancer Guidelines.
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
UCLH is the local and centre for neuro-
when patients die in hospital
oncology
55
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of
pathway
Neurorehabilitation
High-level summary of specification
Appendices
Proposal
Developments necessary
Neuro-oncology centres and local cancer
Neuro-oncology
patients
at
UCLH
have
UCLH will need to help develop local therapy
units ensure neuro-rehabilitation
access to rehabilitation throughout their care
services through linked care providers to
assessment and provision available at key
pathway.
This therapy team has specialist
ensure that rehabilitation is services of the
points in line with national, evidence-
neuro-oncology skills and experience. All
same quality are available to all patients when
based rehabilitation pathways:
qualified members of the therapy team have
discharged or transferred from UCLH.
been trained in advanced communication
skills and had additional post graduate training
in specific skills needed when treating neurooncology patients.
Provision of clinical psychology to address
UCLH has a dedicated neuropsychology
identified patient needs
department, which provides a unique and
highly specialised clinical neuropsychological
diagnostic and therapeutic service.
56
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of
pathway
Supportive
and palliative
care
Appendices
Proposal
Developments necessary
Centres and local units have clear referral
Neuro-oncology palliative care at UCLH is a
There is the need to extend the service
pathways for patients with palliative and
unique service nationally as it is the only
provided by developing service with linked
specialist palliative care needs
service that offers as dedicated palliative care
care providers and GP practices.
High-level summary of specification
consultant and CNS time.
Clear referral guidance for management of
end of life care and complex symptom
control, including management of physical
disability
UCLH
has
a
dedicated
neuro-oncology
palliative care clinic. There is 24 hour on-call
service providing urgent assessment of new
referrals and review / advice for existing
patients
with
unstable
or
deteriorating
symptoms for inpatients and local patients
within our catchment area.
GP and palliative care team to manage
The Palliative Care team is part of the neuro-
patient as appropriate
oncology MDT team facilitating the referral
pathway and appropriate management of the
patient.
57
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
Appendix B: Outline of Proposed Neuro-oncology Centre
Part of pathway
Neuro-oncology
centres
Proposal
Developments necessary
All diagnosis and management of
UCLH propose that all neuro-oncology services for
To
brain and spine tumours takes place
Brain Tumours are provided at NHNN / UCLH.
services in one centre, the service currently
in designated neuro-oncology centres
UCLH are able to provide all diagnostic and
provided at Barts Health would need to be
treatment options within a single organisation and
transferred to UCLH.
have the ability to provide a world-class service in
committed
neuro-oncology.
oncological surgery service to UCLH and
High-level summary of specification
London Cancer will have 2 designated
neuro-oncology centres, 1 for inner
London and 1 for outer London and
provide
to
neuro-oncological
surgery
Barts Health are
transferring
their
neuro-
Queen Square are currently developing their
Essex, each serving a population of at
facilities to ensure there is the capacity to
least 2 million
transfer the service.
London Cancer centres have links to
neuro-oncology centres in
neighbouring areas
58
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of pathway
Multidisciplinary
team
High-level summary of specification
Appendices
Proposal
Developments necessary
Neuro-oncology centres have a
There are 4 neuroscience MDTs. One for neuro-
neuroscience MDT with responsibility
oncology and for each of skull base, pituitary and
for the management of adult patients
spinal.
with brain and spine tumours
The cancer network MDT (the cancer supportive
Neuro-oncology centres host
care) which discuss the supportive needs of the
subspecialist MDTs for pituitary, skull
patients.
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
Timeliness of
assessment and
treatment
Neuro-oncology centres have
Over 80% of patients access neuro-oncology
capacity to assess and treat patients
services through emergency pathways.
with minimum delay and process in
other patients who are referred through either their
place to monitor and report on waiting
GP or medical specialists , all cancer timings and
times
targets are met.
Malignant tumour patients assessed
and treated within at least 62 days of
urgent referral and 31 days of
diagnosis
59
For all
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of pathway
Clinical nurse
specialist
service
Appendices
Proposal
Developments necessary
Neuro-oncology centres have a team
UCLH have a team of CNSs who cover neuro-
Recognising the importance of the CNS role
of clinical nurse specialists who
oncology patients.
within cancer pathways there are plans to
High-level summary of specification
increase these numbers.
perform the functions outlined in the
pathway specification
Diagnostic
imaging
Neuro-oncology centres have rapid
All neuro-oncology patients have access to the
access to the necessary diagnostic
latest diagnostic investigations within UCLH, within
capacity to assess patients with
best practice timeframes.
suspected brain and spine tumours,
including advanced MRI techniques,
PET-CT and PET-MRI
MDT meeting
All new patients discussed if possible
All patients with Brain and Spine tumours are
We will continue to develop communication
at neuroscience MDT or subspecialist
discussed in the relevant MDTs, unless the patient
strategy with local clinicians and external
MDT meeting prior to surgery (not
requires emergency treatment.
organisations.
possible in some emergency cases)
patients’ treatment would not be delayed and the
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,
In is case the
discussion will take place after surgery.
All patients discussed at the MDT are considered
for entry into a clinical trial.
The Brain Tumour
Unit office informs the local referrer within 24
hours of discussion of a new diagnosis.
cancer supportive care MDT and GP
within 1 working day for all new
diagnoses
60
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of pathway
Agreeing the
management
plan
Appendices
Proposal
Developments necessary
Clinical nurse specialist and, where
Neuro-oncology is committed to ensuring that a
In most cases a CNS and relative or carer is
possible, family member or carer
multidisciplinary team is present at diagnosis and
present at diagnosis and developing a
present
for treatment planning. This includes the CNS.
management
All possible management options
All
discussed with patients
comprehensive
High-level summary of specification
Patients provided with clear and
patients
receiving
written
information
diagnosis and treatment options.
comprehensive written and verbal
information on treatment options
61
patient-friendly,
on
their
plan.
This
should
be
happening for 100% of patients which will be
facilitated by having a full compliment of
CNSs.
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of pathway
Neurosurgery
High-level summary of specification
Appendices
Proposal
Developments necessary
All surgery for brain and spine
This proposal is to move all Brain Tumour surgical
tumours undertaken in 1 of 2 neuro-
services to UCLH.
oncology centres (1 for inner London,
combine the Spinal Tumour MDT of Royal
1 for outer London and Essex) by a
National Orthopaedic Hospital and Barts Health at
dedicated neuro-oncology surgeon
Queen Square and liaise with London Cancer
The proposal also sets to
about future provision of intrinsic spinal tumour
treatment.
This is a topical issue in Neurosurgery and UCLH
All neuro-surgeons undertaking
are committed to ensuring that all neuro-oncology
neuro-oncology surgery meet the
surgery is undertaken by neurosurgeons who are
definition set out in the pathway
committed to their clinical practice in neuro-
specification, including undertaking
oncology.
50% of clinical work in neurooncology
Neuro-oncology services have access
to intensive therapy/critical care
services as may be required by some
patients undergoing complex surgery
Neuro-oncology centres have access
Queen Square has a dedicated NeuroCritical Care
Unit, where neuro-oncology patients are admitted
where required.
Queen
Square
has
in-
and
interventional neuroradiology service.
out-of-hours
There are plans to increase the availability of
the
interventional
hours service.
interventional radiology services
62
neuroradiology
out-of-
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of pathway
Neuroradiology
High-level summary of specification
Appendices
Proposal
Developments necessary
Centres have a neuroradiology
The neuroradiology service at NHNN meets all the
service that meets all of the
requirements.
requirements for cover and timeliness
of service set out in the specification
Neuropathology
Diagnosis
following
surgery
Centres have a neuropathology
The Neuropathology department provided at
service that meets all of the
UCLH
requirements for cover and timeliness
Neuropathology department offers an in-house
of service set out in the specification
consultant-led on-call service 24/7.
Clinical nurse specialist and, where
Neuro-oncology is committed to ensuring that a
possible, family member or carer
CNS and family member / carer is present at
present
diagnosis
Patients provided with clear and
All
comprehensive written and verbal
comprehensive
information on diagnosis and
diagnosis and treatment options.
treatment options
Patients offered prompt access to
meets
patients
all
the
requirements.
receiving
written
The
patient-friendly,
information
on
their
All patients are offered a prompt access to
specialist psychological support.
specialist psychological support
63
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of pathway
Inpatient care
High-level summary of specification
Appendices
Proposal
Developments necessary
Patients treated with care and
UCLH have a dedicated neuro-onology ward at
consideration and accommodated in
Queen Square – the Molly Lane Fox Unit. The
single sex wards
ward
functions
provides
single
sex
accommodation
.
Proactive and early contact with local
hospital, GP and community services
There is a dedicated discharge co-ordinator who
fulfils this role.
prior to discharge
Cancer
supportive care
MDT meeting
Implements the non-surgical elements
As UCLH is the main neuro-oncology centre
of the management plan produced by
radiotherapy and chemotherapy are discussed at
the neuroscience MDT, including
the main MDTs.
radiotherapy, chemotherapy and
supportive care needs.
supportive care
64
The network MDT discusses
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of pathway
Radiotherapy
High-level summary of specification
Appendices
Proposal
Developments necessary
Delivered in a London Cancer neuro-
All radiotherapy is delivered in neuro-oncology
oncology centre, or in a neuro-
centres under the care of clinical oncologists with
oncology centre in a neighbouring
a specialist interest in neuro-oncology following
area where this allows care closer to
the treatment recommendations of the MDT and in
home
accordance with London Cancer protocols and
Treatment for primary tumours of the
brain and spine delivered only by
guidelines.
All patients have access to all
appropriate treatment types.
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
Chemotherapy
Delivered only by oncologists with a
All chemotherapy is delivered under the care of
specialist interest in neuro-oncology
oncologists with a specialist interest in neuro-
Treatment follows recommendation of
the MDT and agreed London Cancer
protocols and guidelines
oncology
following
the
treatment
recommendations of the MDT and in accordance
with London Cancer protocols and guidelines.
65
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of pathway
Follow-up
High-level summary of specification
Repeat MRIs carried out at a
Appendices
Proposal
Developments necessary
UCLH adheres to this specification.
frequency determined by the MDT
and patients with progression
identified by post therapeutic imaging
discussed at neuroscience MDT
Neuro-oncology centres work in
UCLH will further develop their partnerships
partnership with local cancer units,
with local cancer units, GPs and hospices
GPs and hospices to implement new
and together set up and implement new
models of long-term follow-up and
models of long term follow and survivorship.
survivorship and to limit follow-up the
The
centre
CNSs
are
working
towards
the
development of the shared care folder that
All patients issued with shared care
meets the specification.
folder so that professionals in all
settings can access key information
from neuro-oncology centre, local
unit, GP and hospice
66
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of pathway
Neurorehabilitation
High-level summary of specification
Appendices
Proposal
Developments necessary
Neuro-oncology centres and local
NHNN
provide an excellent neuro-rehabilitation
cancer units ensure neuro-
service that assess and manage patients at all the
rehabilitation assessment and
key points in line with national, evidence-based
provision available at key points in
rehabilitation pathways.
line with national, evidence-based
rehabilitation pathways
There is full provision of clinical psychology to
Provision of clinical psychology to
address patient identified needs.
address identified patient needs
Supportive and
palliative care
Centres and local units have clear
NHNN and UCLH meet all the specifications
referral pathways for patients with
around supportive and palliative care.
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
GP and palliative care team to
manage patient as appropriate
67
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Part of pathway
Research and
innovation
High-level summary of specification
Appendices
Proposal
Developments necessary
Neuro-oncology centres have access
There is world class research and innovation
to multidisciplinary oncology service
ongoing at UCLH / NHNN due to the partnership
including clinical trial research and
with UCL and IoN.
research nursing
The centre takes full part in all relevant clinical
Centres take full part in all relevant
trials as well as setting up their own in-house and
clinical trials
national studies.
Centres carry out prospective audit of
The centre has an impressive audit and outcome
service and publishes transparent
portfolio including publications.
data on outcomes, including quality of
life (patient reported outcome
measures)
Education and
training
Neuro-oncology centres carry out
The Brain Tumour Unit runs a two yearly study
multidisciplinary education within the
day
NHS to raise and maintain awareness
professionals.
open
to
of brain and spine cancers and their
management
68
hospital
and
primary
care
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendix C: Letters of Support
69
Appendices
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
UCL CANCER INSTITUTE
PROFESSOR CHRIS BOSHOFF FRCP PhD FMedSci
2013
To: the London Cancer Panel for Brain and Spine Cancer
Tumours of the nervous system represent a major cause of cancer-related mortality and
morbidity. Renewed research efforts are needed to dissect the fundamental mechanisms
underlying tumour pathogenesis and translate these discoveries into clinical studies. UCL with our
partner hospitals, the National Hospital for Neurology and Neurosurgery, Queen Square (UCLH)
and GOSH are committed to develop brain and spinal cancer into a national Centre of Excellence.
We have significant breadth in research and care facilities across UCL and at the National
Hospital for Neurology and Neurosurgery.
The outcome of patients with tumours of the nervous system is dependent on a close relationship
between world-class research, including translational and clinical, and a multisciplinary team of
surgeons, medical and radiation oncologists. The close relationship between the UCL Cancer
Institute and the brain cancer service at Queen Square is essential to test new therapies, to
develop personalised care for patients with brain cancer, and to eventually improve their overall
survival.
The research strengths of UCLH/UCL in brain and spinal cancers include the development of
novel targeted strategies, development and application of novel in vivo imaging technologies and
clinical studies. Significant clinical infrastructure at the National Hospital for Neurology and
Neurosurgery supporting clinical research includes brain and spinal tumour-dedicated stereotactic
radiosurgery, intraoperative MRI, dedicated brain cancer in-patient facilities, and the planned
Proton Beam Therapy (PBT) Centre at UCLH. The biobanking core facility at Queen Square for
brain tumours (one of the largest in the UK) is providing essential material for cancer genomics
and personalised cancer care.
70
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
The neuropathology service at Queen Square was the first in the UK to introduce routine
molecular testing of all neurological tumours, and is continuing to lead this in the UK. The UCL
Cancer Institute with Queen Square was recognised for our excellence in brain tumour research
and clinical care, by becoming the first and only Samantha Dickson Brain Cancer Unit in the UK.
Tumours of the Nervous System is one of the major programmes of our CRUK UCL Centre, and
future CRUK funding from this Centre will be used to further strengthen essential brain tumour
core resources; biobanking; clinician scientist recruitment; increase capability for Phase I trials;
molecular profiling; pump-priming collaborations between fundamental and clinical researchers;
increased networking by developing our pan-London Glioma Club, and an annual International
Conference covering basic and clinical research and care.
Yours sincerely,
Professor Chris Boshoff
Director, UCL Cancer Institute
71
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
72
Appendices
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
OH Stanmore
Brockley Hill
Stanmore
Middlesex
HA7 4LP
Tel: 020 8954 2300
www.rnoh.nhs.uk
09 July 2013
Direct dial: 0208 909 5720
Fax number: 0208 385 7614
PA: [email protected]
Dear Mr R Bradford
Letter of support for UCLH bid to host brain and spinal cancer services
The Royal National Orthopaedic Hospital is London’s largest spinal unit base with a combination of
orthopaedic and spinal neurosurgeons. We deal with complex deformity, tumours and trauma. In relation
to tumour, we deal with intradural, extradural, metastases and primary bone tumours and have close links
with the National Hospital for Neurology in Queen Square and UCLH via our Sarcoma Service and also the
Intradural Cancer Service for which we have two neurosurgeons: one, Mr Adrian Casey, cross working on
the Queen Square site and one surgeon, Mr Kia Rezajooi, attending the Queen Square intradural cancer
MDT every Friday morning.
We are keen to support the UCLH bid to host brain and spine cancer services. It is logical that services
should be based for this type of cancer in UCLH/Queen Square with whom we have excellent collaborative
working. We believe the MDT process offered there offers the full gamut of oncological, histopathological
and surgical expertise in order to make high quality decision making in often complex patients. We at
RNOH see ourselves complimenting this by offering a complex spinal service with also the only ring-fenced
rehabilitation bed for spine cancer patients in London associated with our Spinal Cord Injury Centre.
Yours sincerely
Matthew Shaw
Consultant Spinal Surgeon
Medical Director, RNOH
73
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
Appendix D: Clinical Trials Data
Trial short and full name
The TAVAREC (OPEN)
This study is a phase II randomised trial
assessing the significance of bevacizumab
in recurrent grade II and grade III gliomas
Main study objective of information about the study drugs
Primary objective of this study is the activity of both the combination of temozolomide plus bevacizumab and
temozolomide alone in recurrent grade II or grade III glioma patients without 1p/19q co-deletion. The secondary
objectives are safety and the patient-oriented assessment of clinical benefit.
Tumours release the vascular endothelial growth factor (VEGF) protein causing nearby blood vessels to sprout new
vessels and this process called angiogenesis. These blood vessels feed the growth of the tumour. They also provide a
"highway" for tumour cells to spread to other parts of the body. Bevacizamab is a therapeutic antibody that specifically
binds to the VEGF protein, a potent source of angiogenesis. Bevacizamab may block the tumour's ability to
communicate with nearby blood vessels and may prevent the tumour from connecting to the blood supply. Studies
have shown that targeting the VEGF protein with Avastin may interfere with a tumour's ability to grow.
Temozolomide is chemotherapy and is one of the few chemotherapies that crosses the blood brain barrier and
enters the cerebrospinal fluid. Body tissues are made of billions of individual cells. Once we are fully grown, most of
the body's cells don't divide and multiply much. They spend most of their time in a resting state and only divide if they
need to repair damage. When cells divide they split into two, identical new cells. So, where there was 1 cell, there
are now 2 and these then divide to make 4 and then 8 and so on. In cancer the cells keep on dividing until there is a
mass of cells. This mass of cells becomes a lump. The lump is called a tumour. Cancer cells divide much more often
than most normal cells.
Chemotherapy enters the bloodstream and damages dividing cells. Cells in the process of dividing are more at risk
of being damaged by chemotherapy. Chemotherapy kills the cell by damaging the part of the control centre inside
each cell that makes cells divide. Or it may interrupt the chemical processes involved in cell division.
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
HCQ (OPEN)
Appendices
To examine the effect on one-year survival of giving hydroxychloroquine with SCRT to HGG patients aged 70 yrs or
older and to assess the toxicity of giving HCQ with SCRT.
A randomised phase II trial investigating the
additional benefit of hydroxychloroquine to
short
course
radiotherapy
(SCRT)
in
patients aged 70 years and older with high
grade gliomas (HGG)
DCVax-L (OPENING September 2013)
Hydroxychloroquine is licensed for use as a anti-malarial drug and active rheumatoid arthritis (including juvenile
idiopathic arthritis). It is also used outside its licensed indication for systemic and discoid lupus erythematous;
dermatological conditions caused or aggravated by sunlight; malaria.
Although the precise mechanism of action is unknown for its unlicensed use, it may suppress immune function by
interfering with the processing and presentation of antigens and the production of cytokines.
This trial is designed to evaluate the impact on disease progression and survival time, as well as safety, in patients
following treatment with
A Phase III clinical trial evaluating DCVax®L, autologous dendritic cells (DC) pulsed
with tumour lysate antigen for the treatment
of glioblastoma multiforme (GBM)
DCVax(R)-L, an immunotherapy treatment. The experimental therapy uses a patient's own tumour lysate and white
blood cells from which precursors of the dendritic cells are isolated. The dendritic cell is the starter engine of the
immune system. The white cells are then made into dendritic cells and they are educated to "teach" the immune
system how to recognise brain cancer cells. Eligible patients will receive a series of injections of DCVax-L, to activate
and then boost the immune response to the tumour cells.
The main objective of the study is to determine the efficacy of cediranib in combination with oral gefitinib and cediranib
alone by assessment of progression free survival (PFS) defined as the time from randomisation to first progression or
death
(whichever occurs first).
Multi-centre, randomised, double-blind
Tumours release the vascular endothelial growth factor (VEGF) protein causing nearby blood vessels to sprout new
phase II study comparing cediranib
vessels and this process called angiogenesis. These blood vessels feed the growth of the tumour. They also provide a
(AZD2171) plus gefitinib (Iressa, ZD1839)
with cediranib plus placebo in subjects with "highway" for tumour cells to spread to other parts of the body. Cediranib is a multi-targeted tyrosine kinase inhibitor that
has been shown to have anti-oedema effects in the brain and aid in vascular normalisation.
recurrent/progressive glioblastoma
Gefitinib is a type of treatment called a tyrosine kinase inhibitor. Kinases are important proteins in the body that regulate
how the cells grow and divide. It works by blocking (inhibiting) signals within the cancer cells that make them grow and
divide. Blocking the signals causes the cells to die.
DORIC (CLOSED)
IMA950 (CLOSED)
A Cancer Research UK Phase I trial of
IMA950 (a novel multi-peptide vaccine) plus
To assess the safety and tolerability of IMA950 plus granulocyte-macrophage colony-stimulating factor (GM-CSF)
when given alongside standard chemo-radiotherapy followed by adjuvant temozolomide in newly diagnosed
glioblastoma.
The IMA950 vaccine is designed to help certain white blood cells attack and destroy tumour cells. Another drug, GMCSF, will be used with the vaccine to see if it may help the immune system work better.
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
GM-CSF in patients with newly diagnosed
glioblastoma
Appendices
Temozolomide is chemotherapy and is one of the few chemotherapies that crosses the blood brain barrier and
enters the cerebrospinal fluid. Body tissues are made of billions of individual cells. Once we are fully grown, most of
the body's cells don't divide and multiply much. They spend most of their time in a resting state and only divide if
they need to repair damage. When cells divide they split into two, identical new cells. So, where there was 1 cell,
there are now 2 and these then divide to make 4 and then 8 and so on.
Radiation has been used more and more in medicine, both to help with the diagnosis of illness (by taking pictures with
x-rays), and as a treatment for it (radiotherapy). While radiation has to be used very carefully in medicine, specialist
doctors and radiographers have a lot of experience in its use. Radiotherapy works by destroying cancer cells in the
area that’s treated. Although normal cells can also be damaged by radiotherapy, they can usually repair themselves.
REGAL (CLOSED)
The main objective of the study is to determine the relative efficacy of cediranib (either in monotherapy or in combination
with oral lomustine) compared to oral lomustine alone by assessment of progression free survival (PFS) as assessed by
A phase III, randomised, parallel group, independent radiographic review.
multi-centre study in recurrent glioblastoma
Tumours release the vascular endothelial growth factor (VEGF) protein causing nearby blood vessels to sprout new
patients to compare the efficacy of vessels and this process called angiogenesis. These blood vessels feed the growth of the tumour. They also provide a
cediranib monotherapy and the combination "highway" for tumour cells to spread to other parts of the body. Cediranib is a multi-targeted tyrosine kinase inhibitor that
has been shown to have anti-oedema effects in the brain and aid in vascular normalization.
of cediranib with lomustine to the efficacy of
lomustine alone.
EORTC 26082 -22081 (CLOSED)
A randomised multicentre, open-label
phase II radiation therapy and concurrent
plus adjuvant Temsirolimus (CCI-779)
versus chemo-irradiation with
temozolomide in newly diagnosed
glioblastoma without methylation of the
MGMT gene promoter.
SAPPHIRE (CLOSED)
The study’s primary objective is to document the activity profile of CCI- 779 by the evaluation of overall survival in
patients with newly diagnosed glioblastoma (GBM) without methylation of the MGMT gene promoter, treated with CCI779 before and concomitantly to RT, followed by CCI-779 maintenance therapy.
Temsirolimus works by blocking (inhibiting) the mTOR protein, which may help to stop the cancer growing or slow
down its growth.
Temsirolimus can also stop the cancer cells from making new blood vessels. This reduces their supply of oxygen and
nutrients, so that the tumour shrinks or stops growing. Drugs that interfere with blood vessel growth in this way are
called angiogenesis inhibitors or anti-angiogenics.
AP 12009 is given to patients via Convection Enhanced Delivery which delivers the drug to the brain directly via a
catheter connected to a pump. This avoids the problem of penetration through the blood–brain barrier. The primary
outcome is to assess survival rate at 24 months. Secondary endpoints with special relevance on median overall
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
Efficacy and Safety of AP 12009 in Adult
survival and 14-month progression rate and quality of life and the assessment of the Independent Living Score.
Patients
AP 12009 is a novel drug that has not yet been approved for use in any country. It is a man-made substance that
prevents the production of Transforming Growth Factor-beta 2 (TGF-β2) which is thought to interfere with immune
recognition of brain tumours. The cells of malignant brain tumours produce an excessive amount of TGF-β2, which
impairs the immune system, resulting in accelerated growth and spread of the tumour. AP 12009 therapy helps to
prevent this from happening by blocking the production of TGF-β2, thereby breaking down the protective shield and
allowing the immune system to destroy the cancer cells .Because AP 12009 works by building up an immune
response, its effects on tumour size and growth may appear to take longer than treatments which directly attack the
tumour cells.
with
Recurrent
or
Refractory
Anaplastic Astrocytoma (WHO grade III) or
Secondary Glioblastoma (WHO grade IV)
as Compared to Standard Treatment with
Temozolomide or BCNU: A Randomised,
Actively Controlled, Open Label Clinical
Phase III Study.
Temozolomide is chemotherapy and is one of the few chemotherapies that crosses the blood brain barrier and
enters the cerebrospinal fluid. Body tissues are made of billions of individual cells. Once we are fully grown, most of
the body's cells don't divide and multiply much. They spend most of their time in a resting state and only divide if
they need to repair damage. When cells divide they split into two, identical new cells. So, where there was 1 cell,
there are now 2 and these then divide to make 4 and then 8 and so on. In cancer the cells keep on dividing until
there is a mass of cells. This mass of cells becomes a lump. The lump is called a tumour. Cancer cells divide much
more often than most normal cells.
Chemotherapy enters the bloodstream and damages dividing cells. Cells in the process of dividing are more at risk of
being damaged by chemotherapy. Chemotherapy kills the cell by damaging the part of the control centre inside each
cell that makes cells divide. Or it may interrupt the chemical processes involved in cell division.
CENTRIC (CLOSED)
Cilengitide
for
subjects
with
newly
diagnosed
glioblastoma and methylated MGMT
gene promoter a multicentre, open-label,
controlled Phase III study, testing cilengitide
in
The primary objective of this study is to assess whether overall survival time in subjects receiving cilengitide in
combination with standard treatment is statistically significantly prolonged compared to subjects receiving standard
treatment alone. The secondary objectives of this study are to compare Progression Free Survival time between
treatment groups, to investigate safety and tolerability of the drugs and to measure subject Quality of Life.
Cilengitide is an anti-integrin agent which combats tumours by preventing blood vessels from branching into a tumour,
and therefore slowing down its growth. Integrins are found in cell membranes and mediate communication between the
intracellular and the extracellular matrices. Their job is to coordinate different types of cell so they can accomplish a
shared task. The cells of a tumor have special integrins. These control, among other things, the formation of its blood
vessels, which in turn ensure a supply of the nutrients required to sustain its aggressive growth. Integrins also pave the
way for cancer cells’ invasion of surrounding tissue. In addition, integrins hinder cell death in both cancer cells and the
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
combination with standard treatment
cells of the blood vessels supplying the tumour.
(temozolomide with concomitant radiation
Temozolomide is chemotherapy and is one of the few chemotherapies that crosses the blood brain barrier and
enters the cerebrospinal fluid. Body tissues are made of billions of individual cells. Once we are fully grown, most of
the body's cells don't divide and multiply much. They spend most of their time in a resting state and only divide if
they need to repair damage. When cells divide they split into two, identical new cells. So, where there was 1 cell,
there are now 2 and these then divide to make 4 and then 8 and so on. In cancer the cells keep on dividing until
there is a mass of cells. This mass of cells becomes a lump. The lump is called a tumour. Cancer cells divide much
more often than most normal cells.
therapy,
followed by temozolomide maintenance
therapy)
Versus standard treatment alone.
Chemotherapy enters the bloodstream and damages dividing cells. Cells in the process of dividing are more at risk of
being damaged by chemotherapy. Chemotherapy kills the cell by damaging the part of the control centre inside each
cell that makes cells divide. Or it may interrupt the chemical processes involved in cell division.
Radiation has been used more and more in medicine, both to help with the diagnosis of illness (by taking pictures with
x-rays), and as a treatment for it (radiotherapy). While radiation has to be used very carefully in medicine, specialist
doctors and radiographers have a lot of experience in its use. Radiotherapy works by destroying cancer cells in the
area that’s treated. Although normal cells can also be damaged by radiotherapy, they can usually repair themselves.
L19 (CLOSED)
A prospective non-randomised study of IL19SIP
Radioimmunotherapy
(RIT)
in
combination with Whole Brain Radiation
Therapy (WBRT) in patients with multiple
brain metastases from solid tumours.
This study aims at determining the selective uptake of I-L19SIP in brain lesions as well as the analysis of safety of a
combination of I-L19SIP and WBRT. Furthermore, information about objective response and overall survival as well as
clinical performance will be collected. Patients enrolled in the study will be treated during two weeks with Whole Brain
Radiotherapy (10 treatments).Eligibility for RIT will be assessed by administering a diagnostic single dose of I-L19SIP
up to a certain level. Antibody uptake to brain lesions will be analysed. Alternatively, Iodine-124 labelled L19SIP and
immuno-PET scan analysis may be used for diagnostic purposes. Patients will be eligible for radioimmunotherapy (RIT)
if the ratio of brain lesion : normal brain as measured by PET scan and is > 4 at 24 h after injection for at least 1 brain
lesion.
Radioimmunotherapy uses an antibody labeled with a radionuclide to deliver cytotoxic radiation to a target cell. In
cancer therapy, an antibody with specificity for a tumour-associated antigen is used to deliver a lethal dose of radiation
to the tumor cells. The ability for the antibody to specifically bind to a tumour-associated antigen increases the dose
delivered to the tumor cells while decreasing the dose to normal tissues. By its nature, RIT requires a tumour cell to
express an antigen that is unique to the neoplasm or is not accessible in normal cells.
Radiation has been used more and more in medicine, both to help with the diagnosis of illness (by taking pictures with
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
x-rays), and as a treatment for it (radiotherapy). While radiation has to be used very carefully in medicine, specialist
doctors and radiographers have a lot of experience in its use. Radiotherapy works by destroying cancer cells in the
area that’s treated. Although normal cells can also be damaged by radiotherapy, they can usually repair themselves.
Adult Surgical Trial
Trial short and full name
GALA-5 (CLOSED)
An evaluation of the tolerability and feasibility of combining 5amino-levulinic acid (5-ALA or with carmustine wafers (Gliadel) in
the surgical management of primary glioblastoma.
Main study objective of information about the study drugs
The objective of this study is to establish the safety, tolerability and feasibility of combining
fluorescence-guided surgical brain tumour resection with intra-operative chemotherapy in
patients with GBM prior to standard treatment with radiotherapy and temozolomide (chemoRT).
The use of 5-ALA (Gliolan) to generate tumour specific fluorescence as an aid to surgical
resection of GBM has recently been validated as a safe technology that improves the removal of
the tumour. The carmustine wafers are laid onto the brain surface in the tumour cavity at the end
of the resection where they release the alkylating agent carmustine (BCNU). The implants
dissolve slowly over 2-3 weeks releasing carmustine into the surrounding brain tissue. They
don't need to be removed. This type of treatment is only given once.
Adult Radiotherapy Trial
Trial short and full name
IMRT (OPEN)
A phase I/II study if intensity modulated radiotherapy (IMRT) in
meningiomas
Main study objective of information about the study drugs
Intensity-modulated radiotherapy (IMRT) is a radiotherapy delivery technique where the beam is
shaped and its intensity varied. This allows the delivery of complex dose distributions whilst
reducing the dose to normal tissues. In meningiomas, particularly those located in the base of
skull, IMRT has the potential to reduce the radiation dose to the neighbouring neurological
structures at risk thereby minimising the risk of late normal tissue toxicity. This could potentially
allow dose escalation in a selected group of patients.
Radiation has been used more and more in medicine, both to help with the diagnosis of illness
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
(by taking pictures with x-rays), and as a treatment for it (radiotherapy). While radiation has to be
used very carefully in medicine, specialist doctors and radiographers have a lot of experience in
its use. Radiotherapy works by destroying cancer cells in the area that’s treated. Although
normal cells can also be damaged by radiotherapy, they can usually repair themselves.
BR14 (Open)
Phase III trial on concurrent and adjuvant temozolomide
chemotherapy in non-1p/19q deleted anaplastic glioma.
This trial is addressing the overall strategy of optimising the treatment in newly diagnosed
anaplastic glioma patients without combined 1p/19q loss:
Arm 1:Radiotherapy alone (and further treatment including chemotherapy at progression)
Arm 2:Radiotherapy & concurrent temozolomide
Arm 3: Radiotherapy + adjuvant temozolomide
Arm 4: Radiotherapy & concurrent temozolomide + adjuvant temozolomide
It is assess whether concurrent radiotherapy with daily temozolomide chemotherapy improves
overall survival as compared to no daily temozolomide in patients with non-1p/19q deleted
anaplastic glioma. It is also assessing whether adjuvant temozolomide chemotherapy improves
survival as compared to no adjuvant temozolomide chemotherapy in patients with non-1p/19q
deleted anaplastic glioma.
1p and 19q are chromosome arms which occur in the majority of oligodendrogliomas and
anaplastic oligodendrogliomas as well as in an important number of oligoastrocytomas and
anaplastic oligoastrocytomas. It is the consequence of an unbalanced whole-arm translocation
between chromosomes 19 and 1 with the loss of the derivative chromosome (1p;19q). This
signature is a strong prognostic factor and also a predictive factor of response to chemotherapy
as well as radiotherapy. 1p/19q co-deletion has been correlated with both chemosensitivity and
improved prognosis.
Temozolomide is chemotherapy and is one of the few chemotherapies that crosses the blood
brain barrier and enters the cerebrospinal fluid. Body tissues are made of billions of individual
cells. Once we are fully grown, most of the body's cells don't divide and multiply much. They
spend most of their time in a resting state and only divide if they need to repair damage.
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
When cells divide they split into two, identical new cells. So, where there was 1 cell, there are
now 2 and these then divide to make 4 and then 8 and so on. In cancer the cells keep on
dividing until there is a mass of cells. This mass of cells becomes a lump. The lump is called a
tumour. Cancer cells divide much more often than most normal cells.
Chemotherapy enters the bloodstream and damages dividing cells. Cells in the process of
dividing are more at risk of being damaged by chemotherapy. Chemotherapy kills the cell by
damaging the part of the control centre inside each cell that makes cells divide. Or it may
interrupt the chemical processes involved in cell division.
Radiation has been used more and more in medicine, both to help with the diagnosis of illness
(by taking pictures with x-rays), and as a treatment for it (radiotherapy). While radiation has to be
used very carefully in medicine, specialist doctors and radiographers have a lot of experience in
its use. Radiotherapy works by destroying cancer cells in the area that’s treated. Although
normal cells can also be damaged by radiotherapy, they can usually repair themselves.
BR13 (closed)
Primary chemotherapy with temozolomide vs. radiotherapy in
patients with low grade gliomas after stratification for genetic 1p
loss: a phase III study
This is a randomised study done in order to demonstrate a difference in progression-free
survival for primary treatment with temozolomide versus primary irradiation. It was done to
assess whether overall survival can be prolonged by primary chemotherapy with temozolomide,
whether the incidence of late toxicity can be decreased by using primary chemotherapy and if
the toxicity profile of the two treatments affect the quality of life of the patients.
1p is a chromosome arm which occurs in the majority of oligodendrogliomas and anaplastic
oligodendrogliomas as well as in an important number of oligoastrocytomas and anaplastic
oligoastrocytomas. Only loss of heterozygosity on chromosome 1p was associated with
increased progression-free survival indicating a major favourable prognostic role of this genetic
alteration in low-grade gliomas.
Temozolomide is chemotherapy and is one of the few chemotherapies that crosses the blood
brain barrier and enters the cerebrospinal fluid. Body tissues are made of billions of individual
cells. Once we are fully grown, most of the body's cells don't divide and multiply much. They
spend most of their time in a resting state and only divide if they need to repair damage.
When cells divide they split into two, identical new cells. So, where there was 1 cell, there are
now 2 and these then divide to make 4 and then 8 and so on. In cancer the cells keep on
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
dividing until there is a mass of cells. This mass of cells becomes a lump. The lump is called a
tumour. Cancer cells divide much more often than most normal cells.
Chemotherapy enters the bloodstream and damages dividing cells. Cells in the process of
dividing are more at risk of being damaged by chemotherapy. Chemotherapy kills the cell by
damaging the part of the control centre inside each cell that makes cells divide. Or it may
interrupt the chemical processes involved in cell division.
Radiation has been used more and more in medicine, both to help with the diagnosis of illness
(by taking pictures with x-rays), and as a treatment for it (radiotherapy). While radiation has to be
used very carefully in medicine, specialist doctors and radiographers have a lot of experience in
its use. Radiotherapy works by destroying cancer cells in the area that’s treated. Although
normal cells can also be damaged by radiotherapy, they can usually repair themselves.
BR12 (closed)
Phase III trial comparing conventional adjuvant temozolomide with
dose intensive temozolomide in patients wit newly diagnosed
glioblastoma
To determine if dose-intensifying (increasing the “dose-density”) the adjuvant temozolomide
component of the chemoradiation treatment enhances treatment efficacy as measured by overall
survival.
Chemotherapy enters the bloodstream and damages dividing cells. Cells in the process of
dividing are more at risk of being damaged by chemotherapy. Chemotherapy kills the cell by
damaging the part of the control centre inside each cell that makes cells divide. Or it may
interrupt the chemical processes involved in cell division.
Radiation has been used more and more in medicine, both to help with the diagnosis of illness
(by taking pictures with x-rays), and as a treatment for it (radiotherapy). While radiation has to be
used very carefully in medicine, specialist doctors and radiographers have a lot of experience in
its use. Radiotherapy works by destroying cancer cells in the area that’s treated. Although
normal cells can also be damaged by radiotherapy, they can usually repair themselves.
Gliogene (OPEN)
The aim of this study is to understand the DNA resource to enable identification of genetic
variants conferring an elevated risk of gliomas, to identify genetic variants influencing glioma risk
and to identify environmental risk factors influencing glioma development.
Blood sample taken for analysis.
National Brain Tumour Study
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
A study to explore health care professionals’ understanding
of advance care planning in end of life care for people with
primary brain tumours (CLOSED)
Appendices
The End of Life Care Strategy (2008) recommends that care providers discuss future care with
individuals as a way of improving the quality of care to all patients near the end of their life. In
patients with primary brain tumours, health professionals will be the key agents responsible for
such discussions. This study aims to increase both the understanding and engagement of health
professionals in this complex field. Such information is essential for the development of an
advance care planning based intervention for people with primary brain tumours that could be
further refined and tested for feasibility with patients and their carers in future research.
Health care professionals with experience of managing patients with primary brain tumours have
been chosen to be interviewed for 30-60 minutes.
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices
Appendix E: Transport Arrangement to UCLH
Public Transport
The site has extensive public transport options due to its central London location.
Buses
UCLH is very well served by buses, with a number of routes being accessible from within a 600m walking distance of the campus. Between them, these
routes provide bus services across Greater London.
Underground
UCLH is located within walking distance from three London Underground stations: approximately one minute walk to both Warren Street to the west (100m),
and to Euston Square to the east (200m) and approximately five minutes’ walk to Euston (600m) also to the east. Between them, these stations provide easy
access to the Victoria, Northern, Circle, Hammersmith & City and Metropolitan lines.
Mainline Rail Services
Euston mainline station is approximately 600m away from the site. The station offers frequent services on the West Coast Mainline and London Midland to
Manchester, Birmingham and Liverpool as well as long distance commuter destinations such as Tring, Milton Keynes and Northampton. In addition, King’s
Cross and St. Pancras Stations are approximately 1.2km away from the site. These stations offer frequent services on the Midland and East Coast main
lines to destinations to the north and south of London, including Luton and Gatwick Airports. Euston, King’s Cross and St. Pancras Stations all offer cycle
parking and step-free access for mobility impaired travellers.
Private Transport
The area surrounding the UCLH sites encompasses major arterial routes, including Euston Road (A501) to the north, Gower Street (A400) to the east and
Tottenham Court Road (A400) to the west.
Car parking provision at UCLH sites is very limited but UCLH is pledging as part of the bid to support as much clinical care as possible is delivered at local
hospitals to prevent the need to drive to the hub and when travel to the hub is necessary to ensure that the number of visits is limited as far as possible.
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendix F: DARTRIX
Appendices
Improving Services for Brain and Spine Cancer: UCLH Application to London Cancer
Appendices