UCLH proposal for Pelvic Cancer Surgical Centre for North and East London. Submission to London Cancer January 2013

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2 UCLH proposal for Pelvic Cancer Surgical Centre for North and East London 1. Vision Submission to London Cancer January 2013 This document provides further details about the UCLH proposal to provide the surgical cancer centre for prostate and bladder cancer at UCLH in partnership with other stakeholders as a component of the service model for urological cancer services as outlined in the specification prepared by London Cancer. The document restates the vision for this service and gives more details about specific items as requested by London Cancer. Our vision for this pelvic cancer centre at UCLH is to provide a patient centred service offering choice and access to high quality care coupled to world class transitional research and clinical innovation. We will provide clear tumour specific patient pathways that deliver complex surgical and oncological treatments centralised at UCLH and assessment, follow up, and other treatment at local units close to home. UCLH will build on an existing track record as a world class centre for urooncology delivering improved cancer outcomes and standardising care and the audit process throughout London Cancer. We will develop an engaged medical, nursing, and administrative workforce to deliver effective communication at all stages of the patient pathway. The UCL Department of Surgery and UCL Cancer Institute are both fully committed to working with UCLH to provide a world class programme of translation research in urological cancers which will underpin the highest standards of clinical care. 2. Statement of responsibilities The implementation of this pelvic cancer service at UCLH will be a genuine co-design between the different parts of the London Cancer system. Our summary of the responsibilities of the different parts of the system is as follows: Primary care: early appropriate referral to local unit in line with national and London cancer guidelines Local Unit: Manage the local services as part of the agreed pathway, including organisation of local urology MDT, provision of diagnostic services, and timely referral to the specialist MDT in line with the proposed guidelines for referral to the specialist MDT (see section 5). UCLH: Managing the specialist services in line with the specification, including specialist surgical services, ensuring MDT decisions and clinical information is made available to local units and other clinicians in an agreed format in an agreed timescale; developing an active innovation and research programme with UCL covering diagnosis, surgery, radiotherapy, medical oncology to improve future outcomes; and managing timely discharge with appropriate clinical information back to the local unit Local unit manage the follow up and further treatment in line with the agreed pathway. This includes the management and delivery of most of the oncology services required by the pathway. Pathway board: to ensure that the co-designed pathway and the arrangements for the specialist urological cancer multi-disciplinary teams reflect the best service for patients, monitoring; and performance against all aspects of the pathway to ensure that improved outcomes in patient experience are delivered for the whole population of London Cancer

3 3. Leadership Prof John Kelly is the clinical lead for Urology at UCLH and the lead for robotic surgery. He will lead the delivery of the pelvic cancer surgery service at UCLH. Over the last four years he has successfully established agreed joint models of care for specialist bladder and prostate cancer with the Royal Free, Whittington, Barts Health, and Barnet and Chase Farm NHS Trusts. This will be expanded to encompass all of the NHS Trusts within London Cancer and further improvements in the clinical service will be made in line with the service specification developed by London Cancer. Other key individuals who are expected to play a role in developing and shaping this service include Prof Mark Emberton, Mr John Hines, Dr Katharine Piggott, Dr Tom Powles. Further Academic appointments are also under discussion. 4. Patient pathway Our proposed patient pathway is shown at Appendix 1. Further discussion will be undertaken with partner NHS Trusts and the Pathway Board to finalise the agreed version of this pathway which will then define the areas of responsibility for the different NHS organisations within the London Cancer service model for prostate and bladder cancer. This pathway proposes that specialist urological multidisciplinary meetings for prostate and bladder cancer will be hosted at UCLH, BHRT, Barnet and Chase Farm, and Bart Health NHS Trusts. Detailed procedures will be agreed with each Trust for the management of these meetings and handover of patient responsibility between the local unit and the cancer centre at the time that the patient agrees to be referred for specialist treatment at the centre, and when the patient is discharged back to the care of the local unit. Specific information leaflets will be produced to give to patients at different stages of the pathway. When the patient decides to accept referral to the centre at UCLH, a simple leaflet issued by UCLH, developed and agreed with London Cancer, and with Macmillan Cancer Support will explain to patients the reason for their referral to the cancer centre at UCLH including information about the Macmillan Support and Information Service based at the University College Hospital Macmillan Cancer Centre and about transport arrangements. (Further information about our proposals to improve patient transport are in section 7). Cystectomy patients will be given specific written information about urinary diversion for patients undergoing cystectomy which will understand the treatment and follow-up care. Prostatectomy patients will be given specific written information about the procedure and with details of what to expect after surgery and how to contact UCLH for help if required. Other specific information will be developed for relevant patient groups, for example an e- learning package which we are developing for patients undergoing radical prostatectomy to help set realistic goals for their post-operative recovery. 5. Joint working 5.1 Specialist MDTs We propose that four specialist multidisciplinary meetings for prostate and bladder cancer should take place hosted by Barts Health, Barnet and Chase Farm, BHRT, and UCLH. UCLH will undertake to ensure that good video conferencing access is provided for individuals connecting to those MDTs which are hosted at UCLH. All

4 cases which come within these clinical guidelines should be referred by the local units for discussion at one of these four specialist MDTs. Guidelines for referral of Bladder cancer to specialist MDT: Muscle Invasive Bladder Cancer (TCC and other histology). Multifocal G3 T1, and G3T1 associated with Tis. New cases of G3 Ta, or T1 or Tis were cystectomy will be considered. Recurrent G3 T1, or G3 Ta, or Tis after intravesical therapy. Recurrent multifocal G2 T1 disease after intravescial therapy. Persistently positive cytology with no demonstrable cause. Urethral TCC Prostatic TCC Guidelines for referral of Prostate cancer to specialist MDT: Localised prostate cancer where it is appropriate to consider radical treatment (T1-2 No Mo). Evidence of treatment failure following radical therapy. Locally advanced prostate cancer with no metastases or gross lymph node involvement on imaging (T3 No Mo). Problematical cases of castration-relapsed prostate cancer. The detailed structure of these MDT meetings and the specialist clinics will be discussed with the Pathway Board and with each local unit. We propose that at least one Oncologist from every local unit, specialising in Uro/oncology, should be a core member of the specialist MDT where patients from that local hospital are discussed. All patients will therefore be seen locally by surgeon and oncologist for discussion of the treatment options before taking a decision on treatment or referral to the pelvic cancer centre. 5.2 Operational action group We will invite each Trust in London Cancer to nominate representative(s) to join an operational action group, chaired by Prof John Kelly, to discuss the detail of the pathway and the referral arrangements and then to oversee the implementation of the agreed pathways and operational and clinical communication between the units and the centre is effective. Lois Roberts general manager of Urology, will be responsible for the implementation of the pathway at UCLH, and for ensuring effective liaison with all of the local units. We hope that local units will nominate Clinical Nurse Specialists and Cancer Managers to be involved in these detailed discussions with UCLH to ensure that the pathway provides seamless care for patients. 5.3 Consultant surgeons specialising in robotic surgery Robotic surgery offers clear benefits to patients and to the NHS, as a systematic review published recently in Health Technology Assessment demonstrates (Health Technol Assess Nov;16(41):1-313: Systematic review and economic modelling of the relative clinical benefit and cost-effectiveness of laparoscopic surgery and robotic surgery for removal of the prostate in men with localised prostate cancer. Our

5 proposal reflects this by proposing that the great majority of surgery at the pelvic cancer surgical cancer centre should be carried out as robotic surgery by surgeons with specific training, expertise, and dedicated time for this surgery. Our analysis of projected activity and demand indicates that about six consultant surgeons will be required to deliver this service, and we propose that all six of these posts should be joint appointments with UCL or with other NHS Trusts. UCLH has already developed successful partnership working with partner organisations to ensure that local agreement is reached to reconfigure the deployment of surgical resources to enable joint appointments to be made. This process has of course included changes to job plans of UCLH surgeons as well as those of local units. Five joint appointments of urological surgeons specialising in robotic surgery are now in place (two with Barts Health, one each with UCL, with Royal Free and Whittington, and with Barnet and Chase Farm). The process used to achieve this local agreement included full engagement with the local units and with each individual surgeon affected. Views were sought from the clinicians locally on how they believe their surgical resource should be reconfigured and who would be undertaking the joint appointment with UCLH. These discussions resulted in successful local agreements as described above. Further discussions are now needed with local units to formalise the joint appointments in place and to create one (or more if needed) further such joint appointment(s). We believe that a similar inclusive approach will achieve the necessary agreements, and we will ensure that there is a documented agreement between the Trusts and that the job plans of the surgeons will be signed off jointly by the Trusts concerned. If local agreement is not reached in direct discussions with the surgeons affected, Dr Geoff Bellingan will discuss this personally with the Medical Director(s) of the local unit(s) and agree the way forward. If the Medical Directors agree that a formal assessment process is needed, then this will be convened by agreement between the Trusts. If any NHS Trust considers that these discussions should include an HR input that is independent of the NHS organisations involved, we will invite the UCL Partners Director of Human Resource to provide this independent view. 6. Local Services UCLH is fully committed to ensuring local services are inline with the agreed pathway. Neither the specification produced by London Cancer, nor this response from UCLH, are proposing that any oncology treatment currently carried out by local units should in future be moved to the pelvic surgery cancer centre. UCLH is fully committed to supporting local units to develop local oncology services at all of the local units in line with the agreed pathway. We look forward to working closely with the expert reference groups for radiotherapy and chemotherapy to support initiatives designed to agree standard treatment protocols across London Cancer, and to make it easier and more convenient for patients to be treated locally wherever possible. (We recognise that the Radiotherapy Expert reference group may want to review the location of brachytherapy treatment across London Cancer at some stage.) Emergency admissions following pelvic surgery procedures are infrequent, however, plans are in place to manage patients that may experience complication post operatively providing access to specialist advise and if necessary readmission without the necessity for attendance at an A&E department. UCLH has agreed funding to recruit two new senior clinical nurse practitioners to the urology department to assist in managing patients in the post operative period. These appointments will assist in the development of existing enhanced recovery programs,

6 discharge planning and will provide a point of contact to reduce the need for readmissions. This Clinical Nurse Practitioner service will commence from April An individual phone call to each patient post-discharge to answer any queries or concerns and ensure that the discharge was managed appropriately with correct information provided and contact points for follow up. A Surgical Clinical Nurse Practitioner hotline available Mon Sun, 8am 10pm specifically for post operative patients. Support to patients on the enhanced recovery pathway and assistance with discharge planning. Weekly drop in clinics for any post operation concerns. Enhanced local services for post-surgical patients to undergo trial without catheter. Effective communication with nursing teams at local hospitals relating to care of patients post discharge. This Clinical Nurse Practitioner service will complement the existing urological services already in place to help patients on discharge. Enhanced Patient information leaflet including FAQ such as what to do if catheter blocks or haematuria occurs. Instructions on how to contact a member of the surgical team 24/7 should problems occur particularly out of hours. 24/7 consultant led on call rota staffed by urologists able to manage complications that may arise. 7. Transport 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. Immunocompromised patients will continue to be eligible for the provision of NHS funded transport, and this will always be provided in personal use vehicles, not shared with other patients. Eligibility of NHS funded transport is governed by DH guidance which specifies that patients eligible for NHS funded transport are those where the medical condition of the patient is such that they require the skills or support of PTS staff on/after the journey and/or where it would be detrimental to the patient s condition or recovery if they were to travel by other means and where the patient s medical condition impacts on their mobility to such an extent that they would be unable to access healthcare and/or it would be detrimental to the patient s condition or recovery to travel by other means. UCLH does not consider that it should be necessary to make any changes in these overall NHS eligibility criteria for NHS funded transport. UCLH believes that eligibility for NHS transport should be based on clinical need, and that the same service should be provided to patients on the basis of their clinical need regardless of the underlying disease that gives rise to their disability and need for transport. UCL Partners have drawn up a specification for patient transport services and patient governors and other representatives from constituent organisations were involved in preparing this. UCLH will use this specification to help to ensure that all NHS funded

7 patient transport services are provided in accordance with the requirements of this specification, in appropriate vehicles, with appropriate standards of timeliness, comfort, and patient care. For the population covered by London Cancer, where patients are eligible for free transport, the NHS patient transport service is normally provided by the UCLH in-house transport team, and UCLH has direct control over the standards of service provided. We will work with the Cancer Partnership Groups for North Central and North East London to ensure that the service is of a high standard, and that any issues of negative feedback are dealt with promptly and appropriately. UCLH is building on the UCLP 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. We acknowledge the need to improve the booking arrangements for cancer patients using NHS transport for journeys to University College Hospital 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 this. 8. Audit and Outcomes UCLH are fully committed to regular publication and dissemination of relevant audit and outcomes data on the results of the service provided. Appendix 2 gives details of current work on Audit and Outcomes in pelvic cancer surgery at UCLH. 9. Organisational capacity The Board of Directors of UCLH NHS Foundation Trust have 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 pelvic cancer centre as outlined in the specification prepared by London Cancer. We have shown this commitment over the last few years in developing effective joint working arrangements between UCLH and Royal Free, Whittington, Barts Health, and Barnet and Chase Farm and the UCLH prostate and bladder cancer service. The commitment to the clinical service is matched with a commitment to effective joint working with UCL to develop a world-class translational research programme in prostate and bladder cancer covering diagnosis, surgical management, oncology, and other innovative treatment options. This document explains the UCLH proposals for the development of the pelvic cancer centre at UCLH to meet the requirements of the London Cancer service model. We recognise that further details of the pathway and referral rearrangements need to be agreed with local units, particularly with Harlow and North Middlesex (in conjunction with Barnet and Chase Farm) and with Homerton and BHRUT. All aspects of the full specification for the pelvic cancer surgical centre will be fully in place by the end of March 2014.

8 Appendix 1 to UCLH response to London Cancer, January Proposed pathway for prostate and bladder cancer in London Cancer indicating responsibilities of cancer unit and cancer centre (and shared responsibility for handovers ). UCLH proposal for discussion and agreement issued Jan 2013 GP referral to patient s local hospital Initial consultation at local hospital Consider trial eligibility at all points along pathway Local unit Grade 3 G3 Bladder Bladder Tumour Tumour Diagnostics & staging at local hospital Local MDT (all new cancer diagnoses) Local FU appointment Pt informed of diagnosis and MDT outcome And assigned local key worker CNS Decision to refer to SMDT if radical options available SMDT meetings to be hosted by UCLH, BCFH, Barts/Whipps, BHRT Discussion at SMDT and treatment plan formed Patient informed of SMDT decision and Tx Options at local hospital MDT clinic Cancer UCLH If patient is a candidate for Radical Pelvic Surgery then Referral to UCLH Seen at UCLH SMDT Clinic and at PAC clinic For consenting and surgery preparation and assigned UCLH Key Worker Operation (Prostatectomy/Cystectomy) performed at UCLH (Discharge summary sent to local unit and GP on day of discharge) Trial without catheter post surgery ( at local unit for prostate cancer patients) If candidate for cystectomy; full consultation of options with Urinary Diversion CNS team Follow up appointment at UCLH 4 weeks after surgery to discuss outcome and confirm discharge to local hospital and local key worker. Local unit Ongoing Follow up at local hospital including: ED or incontinence advice Decisions on further management discussed at local MDT and referred to specialist MDT if required Cystectomy f/up as per local agreement with referring trust

9 UCLH response to London cancer Appendix 2 Audit and outcomes in prostate and bladder cancer Audit activity spans patient experience, pathway, service administration and surgical outcomes. 1. Patient experience In addition to the National Patient Experience Survey in which Urology and Prostate scored above average against peers in many domains, we have applied the Sheffield Patient Assessment Tool (SHEFFPAT) which has been developed to assess the quality of the relationship between the patient and clinician to patients. We plan to continue to use this tool within all Uro-Oncology clinics as a useful measure to assess communication skills, especially in clinics where patients are given a cancer diagnosis. We also plan to continue to tailor more immediate patient experience audits to areas of service development or service change. Examples of recent audits undertaken or in progress are: Patient Experience of 1-Stop Haematuria Pathway The purpose of this audit was to compare experience of multi-visits versus one stop approach when the 1 stop haematuria clinic was introduced. There was concern from some clinicians and patient representatives that patients might find multiple procedures and consultation on same day over tiring. The audit demonstrated that patients on the whole preferred the one stop approached and supported the change in practice. Audit underway on patient s experience of pathway when being referred from Barnet and Chase Farm Hospital to UCLH for surgical treatment. There was a desire to audit patient s experience three months into the partnership with BCFH to access how patient s felt about their pathway and how we performed against key areas such as communication and travel. This audit is currently ongoing and results have not yet been assessed. We plan to continue to monitor patient experience within the London Cancer pathway and have an active programme of service improvements aimed at addressing any areas of weakness highlighted by the National Patient Experience Audit and more local audits. 2. Pathway and service improvement Auditing the pathway is an important aspect of an evolving process and to date, has been implemented by the operational action group. The Pelvic Cancer Centre will continue to conduct audit to identify gaps and ensure a high quality service. Examples of completed audits are summarised in Appendix 2. NSSG Audit: SMDT Histology & Outpatient Review Post Surgery This audit looked at review rates after radical surgery for network referrals to the SMDT (i.e. patients referred by the Local MDTs to SMDT for treatment) to ensure that surgical outcomes were being discussed and patients were given results and

10 treatment plans within an appropriate timeframe. In particular it looked at Histology review at the SMDT and post operative outpatient follow-up in the SMDT clinic, the internal targets for which are, within 2 weeks and 4 weeks respectively. Referral to receipt of notes for Whittington An audit to review time delay between referral sent to UCLH and clinical notes being made available (including any relevant scans or histology). This type of audit is essential to ensure that any administrative delays are kept to a minimum and do not disrupt patients pathways. We plan to repeat this audit on an annual basis and review all local MDTs that refer to the UCLH Pelvic Cancer Centre. Pathway audit: 24 hour GP Notifications An audit to review compliance against National Cancer guidelines and access whether GPs were receiving a fax notification within 24hours of patient being informed of cancer diagnosis, to ensure patient s GP remains fully informed and able to offer any additional support to the patient and their family as required. 3. Surgical outcomes Key performance indicators as well as operative and preoperative events for prostate and bladder surgery are captured using the Clavien system and reported to the Departments Urology Governance meeting held weekly at UCLH. Effectiveness audit of surgical outcomes is complied prospectively and reported annually to Urology Governance. Examples of pelvic oncology audits (National and Network) and effectiveness reviews are. Effectiveness review: Joint surgical and anaesthetic audit of robotic surgery A detailed review of the first 20 robotic cases undertaken at UCLH and submitted for discussion at NCL Network Meeting. Effectiveness review: Outcomes for robotic surgery A 12 month review of outcome data for patient undergoing robotic prostatectomy the results of which were submitted as a poster to BAUS (British Association of Urological Surgeons) as attached in appendix 3. Effectiveness review: MRI for Prostate Cancer Detection A review of the use of multi parametric MRI (mpmri) prior to prostate biopsy. Audit of surgical outcomes is conducted for prostate and bladder using specific patient outcome measures developed as generic and tumour specific tools. An important aspect will be the generation of individual surgeon performance feedback described by the MSKCC group to monitor and report outcomes in prostate cancer. 3.1 Proposed Prostate National Cancer Audit UCLH we will apply to the Clinical Reference Group of the National Prostate Cancer Audit, for University College Hospital London to be a pilot site for the upcoming national audit. This will allow patient reported outcome and patient experience tools developed for the purpose of the national audit to be evaluated in the London Cancer

11 region. We will comply fully with outcome data requests from the National Prostate Cancer Audit which is likely to commence in February Use of PROM (patient recorded outcome measuress tools Generic PROM tools: We will use similar PROM tools to those employed in the recent Quality of Life of Cancer Survivors in England survey which was commissioned by the Department of Health as part of the National Cancer Survivorship Initiative. For example, overall quality of life will be evaluated using the EQ5D. Tumour specific PROM Prostate: FACT (P) Functional Assessment of Cancer Therapy (prostate) questionnaire, the 26-item short form of the Expanded Prostate Cancer Index Composite (EPIC), the International Index of Sexual Function score (IIEF-15) and the International Prostate Symptom Score (IPSS). Tumour specific PROM Bladder: QLQ-BLM30 Version 1: is a 30-item questionnaire for patients with muscle invasive bladder cancer (T2, T3, T4a and T4b). This module is designed to be used in conjunction with QLQ-C30 and includes an assessment of urinary symptoms, bowel symptoms, sexual functioning, urostomy problems, problems associated with the use of a catheter, and body image. We have used the QLQ BLM30 for patients undergoing cystectomy who have entered the BOLERO trial which is now completed. The BOLERO trial included a qualitative element and was designed as a feasibility study. We will ask the TMG for feedback as to the uptake and appropriateness of the tool for routine outcome measure for patients undergoing cystectomy. With regard data collection itself, we will employ a pelvic cancer outcomes data manager to create and manage a UCLH pelvic cancer outcomes database containing outcomes data on all patients accessing UCLH s pelvic cancer services. Outcome data will be batched and reported in quarterly intervals for the service as a whole on the hospitals intranet. A separate research team will be set up with the remit of developing research questions which can tested using UCLH pelvic cancer outcomes database.

12 References for audit and outcomes in prostate and bladder cancer FACT P: The FACIT (Functional Assessment of Chronic Illness Therapy) measurement system is a collection of quality of life questionnaires targeted to the management of chronic illness. FACT-P is a disease-specific adjunct to the FACT measurement system and encompasses a 12-item prostate cancer subscale. International Index of Erectile Function (IIEF) The IIEF was first developed by Rosen and colleagues in 1997 [43] and identified five domains of male sexual function - erectile function, orgasmic function, sexual desire, intercourse satisfaction, and overall satisfaction. These five domains were identified following a review of the literature concerning pre-existing sexual function questionnaires and by interviewing men reporting sexual dysfunction. The result was a psychometrically sound 15-item questionnaire that accurately evaluated a man s sexual function. Although the IIEF is well-validated and a familiar to urologists, it has been suggested that the questionnaire concentrates on function alone rather than evaluating the impact that impaired function may have on a man s quality of life. Subsequently an abridged version of the IIEF score has been developed for ease of patient use. Expanded Prostate Cancer Index Composite (EPIC) John Wei and colleagues in 2000 [45] developed and validated the Expanded Prostate Cancer Index Composite or EPIC for men with prostate cancer. The EPIC represents an expanded version of the 20 item University of California Los Angeles prostate cancer index augmenting the index with items regarding orgasm and a multiitem set regarding bother. Overall there are 50 items included in the questionnaire. The tool assesses erectile dysfunction, urinary dysfunction together with the toxicity induced by androgen deprivation. Overall the composite is scored from 0 to 100 with higher scores representing better sexual health. Although generally regarded as excellent to compare toxicity profiles of patients undergoing brachytherapy, external beam radiotherapy or radical prostatectomy, some have argued that the composite lacks brevity. Furthermore, the composite does not assess quality of life and as such has to be paired with another general health-related quality of life questionnaire. International Prostate Symptom Score (IPSS) This symptom index originally devised by Barry and colleagues [46] in 1992 on behalf of the American Urological Association, is composed of 8 different items pertaining to a number of specific urinary complaints including urinary frequency, nocturia, weak urinary stream, hesitancy, intermittence, incomplete emptying and urgency. The symptom score is well known to urologists having been devised to assess lower urinary tract symptoms in men with symptomatic benign prostatic hyperplasia. The index is well validated however it is not exhaustive. For example, the symptom score does not have specific domains for urinary incontinence or dysuria.

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