Review of the Tumour Endocrine Services in the North of Scotland

Transcription

1 Review of the Tumour Endocrine Services in the North of Scotland Final 11/03/13

2 Table of contents Page no. Executive Summary. 3 Organisation of the endocrine tumour service 4 The regional MDT 7 Treatment 7 Follow-up 8 The surgical workforce 8 Audit and quality assurance.. 10 Appendix

3 Structure and organisation of endocrine cancer services in North of Scotland Executive Summary The review of the North of Scotland endocrine service was requested by NHS Grampian around service developments in endocrinology, particularly in the areas of thyroid, parathyroid, adrenal and pancreatic endocrine tumours. The review was commissioned by the North of Scotland Cancer Network (with support from the North of Scotland Planning Group) with the following remit and scope: To examine the patient pathway in the North of Scotland in the context of the current professional and organisation guidance (American Thyroid Association 2009 and British Thyroid Association next revision due 2013) and highlight good practice and any potential improvements. To highlight and make recommendations on the organisation of the clinical services across the North of Scotland which will improve the patient pathway and quality of care. To make recommendations on the future workforce requirements required to deliver the service within the parameters of a regionally coordinated service. This review took place over 9 months and was co-ordinated by a review group consisting of membership from clinical staff working in endocrine services in the 3 Northern mainland boards (NHS Grampian, NHS Tayside, NHS Highland). The review group was chaired by Professor Z Krukowski with managerial and organisational support from NOSCAN. The main recommendations arising from this review are as follows (a full list of recommendations is presented in Appendix 1) and predominantly affect NHS Grampian. It is recommended that the North of Scotland Endocrine Service be formally constituted as a Managed Clinical Network within the parameters and guidance of CEL 29 (2012). Embedded in this structure are mandatory requirements for a Clinical Lead, management support and dedicated administrative resource. To meet the projected increase in activity in the surgical endocrine service in Aberdeen, it is recommended that an additional consultant general surgeon with expertise in endocrine surgery be appointed. An increase in operating sessions in Aberdeen will be required to support these developments which will coincide with the new theatre build in ARI. 3

4 It is proposed that an interested ENT surgeon in Aberdeen be identified to join the endocrine team to provide relevant expertise and also improve training for ENT trainees in Aberdeen. The NHS Grampian Combined Thyroid Clinic requires radical redesign to meet contemporary diagnostic and imaging standards. Re-location to Clinic E would utilise the existing cytology and ultrasound facilities. The increased room space will provide opportunities for pre-and postoperative laryngoscopy and for collaboration with ENT. Surgeons undertaking thyroid surgery should operate on at least 20 cases per year. All patients with endocrine cancer should be discussed at the MDT. Endocrine surgery should take place only in Aberdeen, Dundee and Inverness to meet these and other relevant quality criteria. Parathyroid neoplasia is currently under diagnosed as a consequence of the withdrawal of routine serum calcium estimation. It is recommended this be reintroduced. Organisation of the endocrine tumour service The endocrine services (endocrinology and endocrine surgery) in the North of Scotland (Grampian, Tayside, Highland, Orkney and Shetland Health Boards) already collaborate and work as an informal clinical network with multidisciplinary meetings (MDT) around cancer and education. There is a strong tradition of excellence in endocrinology and endocrine surgery with respect to quality in practice, research, and audit reflected in leadership of national professional organizations, journal editorship and publications, which reflects well on the relevant Health Boards and Universities. It is recognised that these foundations need to evolve and develop to meet the demands of delivering these services in the 21 st century. There is an ideal opportunity to formalise these arrangements by consolidating the existing regional managed clinical network (MCN) to satisfy the requirements of CEL 29 (2012). The MCN structure will ensure a more formal clinical governance structure and clarify the increased support required to sustain the network. The medical aspects of endocrinology are well serviced in the North of Scotland and this review focuses to a considerable, although not exclusive extent on the endocrine surgical and supporting services. Endocrine cancers are rare and managed within the wider spectrum of endocrine disease. Optimal management of these cancers necessarily requires regular exposure and experience in managing and operating on 4

5 benign endocrine conditions supplemented with additional training and exposure to the more challenging cases. Endocrine Surgery is a recognized sub-specialty within General Surgery with a defined curriculum, training programme and examination for the intercollegiate FRCS. Endocrine operations includes thyroid, parathyroid, adrenal and pancreatic procedures with the vast majority comprising of thyroid procedures. There have been major developments in the investigation, treatment and subsequent management of thyroid cancer over the last twenty years, which must be addressed when considering the delivery of a contemporary high quality service. There have been similar developments in parathyroid surgery and the transformation of abdominal endocrine surgery with the laparoscopic approach now the preferred route for the majority of adrenal and endocrine pancreatic tumours. Referral All referrals from primary care for endocrine pathology including suspected thyroid cancer should be made electronically on an agreed template to the local service. Local services should review and where necessary update the guidance given to primary care on the key symptoms and indications for routine and urgent referral to the endocrine service. Primary care services should ensure that the investigations prior to referral are carried out according to the agreed guidance. This guidance includes the relevant blood tests but advises against routine imaging with consequent over-diagnosis of clinically inconsequential abnormalities. Necessary imaging will be requested at secondary care level. Outpatient clinic The British Thyroid Association guidelines (2007) recommend that all patients referred should have access to a multidisciplinary team consisting of: - an endocrine surgeon - an endocrinologist - an oncologist and/or a nuclear medicine physician - with support from the pathologist, medical physicist and biochemist - nurse support We would add a radiologist and specifically cytologist. The cytologist and pathologist could be the same individuals. Specialist nursing input for advanced thyroid and endocrine cancer is infrequent and would not justify a dedicated specialist nurse. However this role could be incorporated into a head and neck/ent cancer nurse specialist role with relevant training in the nuances of thyroid cancer. 5

6 In Aberdeen high-dose radioiodine therapy is undertaken by ARSAC-certified endocrinologists: two state-of-the-art radionucleotide treatment rooms have opened recently in the ECC at Foresterhill. Patients from Highland requiring RAI therapy are referred to Aberdeen. Most thyroid swellings are recognisable as such by a competent general practitioner. In Aberdeen they are currently referred to the Combined Thyroid Clinic. This has been a combined surgical/medical clinic for more than 50 years with the addition of cytology since Whilst this has been and remains an outstanding example of multidisciplinary working, it requires development to meet modern requirements. There is some overlap of referred patients between the head and neck/ent Neck Lump Clinic because of the anatomical area. The main focus of Neck Lump clinics is on the expeditious diagnosis of lymph node malignancy often of metastatic origin from aerodigestive squamous cancers. These are much more aggressive cancers characterised by rapid progress and dire prognosis compared with relatively indolent thyroid cancers with an excellent prognosis. This Neck Lump Clinic in Aberdeen is located in the Head and Neck Clinic in the Link Building whereas the Thyroid clinic is in Clinic A. When the Breast Clinic moved to Clinic E the cytology facility moved there from Clinic A. Amongst options considered for improvement was sending all thyroid swellings to a neck lump clinic but the majority of thyroid swellings are benign and often associated with functional problems requiring medical input. There would be major logistic and time tabling issues precluding relocating endocrine and cytology staff to such a clinic. The preferred option is to enhance the Thyroid Clinic by relocation to Clinic E. This has several attractions: existing cytology and ultrasound facilities in regular use for the breast clinics. sufficient rooms to provide a locus for flexible laryngoscopy which will be become a mandatory component of pre- and postoperative assessment of thyroid surgery. maintain the link with endocrinology and enhance collaboration with ENT. The cornerstone of diagnosis and management of many endocrine tumours (particularly thyroid cancer) remains accurate cytology (FNAC) in the outpatient clinic setting. The first publications on the utility of thyroid FNAC in the UK came from the Aberdeen Thyroid Clinic in the 1980s and an enviably high standard in this area has been maintained ever since. It is possible that patients progressing through the diagnostic journey would be expedited with more ultrasound scanning both by specialist radiologists and non-radiologists. The latter would require appropriate basic training in scanning and the former expertise in achieving low rates of unsatisfactory cytology samples. The utility of FNAC is predicated on the quality of the aspirate in turn dependent on the expertise of the clinician. It is recommended that: Staff performing FNAC are trained in collection of aspirates. 6

7 There is appropriate on site technical support for those performing FNAC to ensure that sufficient diagnostic material is obtained. Quality is assured and maintained by regular audit. That ultrasound scanning is used when necessary to help reduce the number of inadequate fine-needle aspirates and clinic re-attendances. The regional MDT The regional MDT has been a qualified success but requires enhancement. The original three monthly meeting frequency has proved inadequate for the workload and precludes routine preoperative discussion of cases. All thyroid and endocrine cancers and other complex endocrine conditions should be discussed at the MDT and where appropriate referred to the regional centres at Aberdeen and Dundee, as they are at present. It is recommended that the frequency be increased to monthly with Inverness participating every second month to meet their local circumstances. Clinicians will continue to discuss cases locally and informally within the network as appropriate between MDT and bring cases to the regional MDT as appropriate. The regional endocrine MDT requires dedicated administrative support to ensure the smooth running of the MDT. Arrangements must be put in place to cover absences of administrative support and to ensure onsite technical support for videoconferencing. The current setup for the regionally video-conferenced MDT requires improvements, particularly around sound quality. More focused chairing of the MDT, and better video conferencing etiquette will help to improve the quality. An external expert review of the audio videoconferencing facilities is recommended. Treatment Surgeons performing thyroid surgery must work within the MDT structure and perform more than 20 cases per annum. Intra-operative PTH measurement needs to be considered for parathyroid surgery as it has the potential to improve the surgical outcome and increase proportion of operations done as day cases. It will also facilitate re-operative surgery. The feasibility of sharing this equipment across the three services in the North should be explored. Intra-operative laryngeal nerve monitoring is becoming more commonly used in thyroid surgery and although the evidence for its routine use is of poor quality, it is likely this will become an irresistible innovation if only for the practice of defensive medicine. There will be a financial cost associated with this change in practice which may have to be set against the potential cost of a negligence claim following nerve injury. Due to the complexity of perioperative management procedures related to the treatment of phaeochromocytoma and other functional tumours, it should be carried out in Aberdeen or Dundee. 7

8 Laparoscopic surgery will continue to be the preferred approach for the majority of adrenal and suitable pancreatic cases. It follows that an endocrine surgeon must maintain an appropriate level of laparoscopic skills. All patients with thyroid cancer should be discussed at the MDT following surgery and the need for adjuvant or palliative therapy including radioactive iodine, external beam radiotherapy and systemic chemotherapy discussed. Follow-up Although endocrine cancers are relatively rare the natural history with the exception of anaplastic cancers, is much longer than most cancers and recommended follow-up is life long. Services should review clinic facilities and the resources required to ensure that follow-up is sustainable. Where appropriate, the services should explore other means of followup for patient groups. For example, it may be appropriate to follow up parathyroid cases in primary care with the appropriate blood tests. Where such follow-up takes place out of secondary care, appropriate monitoring and safety nets must be put in place. The surgical workforce Currently endocrine surgery, and in particular thyroid surgery, is provided by the three main health boards in the North of Scotland. Endocrine surgery is provided on a variable basis in the various health Boards viz: Grampian/Moray One general/endocrine surgeon performing the bulk of the work in Aberdeen Royal Infirmary (ARI average 105 operations per annum); One general/urology surgeon in Elgin (average 8-9 cases per annum over last 10 years). Tayside - One general/endocrine surgeon with contribution from one ENT surgeon. Highland Two ENT surgeons with contribution from one general surgeon (parathyroid surgery only). Orkney and Shetland Health Boards General surgeons occasionally perform thyroid operations but most patients are referred to ARI. Throughout Europe the vast majority of endocrine operations are performed by general/endocrine surgeons whereas in the UK there has been a trend particularly in district general hospitals, for more thyroid surgery to be undertaken by ENT surgeons. Endocrine surgery is a recognised specialty within General Surgery with a defined curriculum, syllabus and examination structure. Exposure to thyroid surgery is also a component of contemporary 8

9 ENT training, which is a deficiency in ENT trainees experience when rotating through Aberdeen Royal Infirmary. In Highland and Tayside ENT trainees get exposure to thyroid surgery, although the highest number of procedures is in Aberdeen. There is strong evidence that surgical outcomes are influenced by the training and experience of the surgeon and furthermore are volume related. Recent research led from Aberdeen indicates clinically significant variations in practice in thyroid cancer surgery across the UK, which has important implications for a patient centered approach to management. These all impact on optimal future provision of service in this area and optimal delivery of service, in common with all sub-specialty areas, requires concentration of expertise with appropriate and enhanced diagnostic services. It is recommended that: Endocrine surgery is performed by surgeons with appropriate training who participate fully in local and recognised national outcome audit. It is likely that participation in the BAETS national audit will become a mandatory component of revalidation for the NHS in England and Scotland could follow thereafter. Complex, preoperative and rare endocrine cancers and conditions should continue to be referred to the Endocrinology/Surgery services in Aberdeen or Dundee as happens at present. Endocrine surgery should only be carried out in Inverness, Aberdeen and Dundee. To meet existing Time to Treat Guarantees, ensure succession planning and sustainability of the specialist endocrine service in NHS Grampian, it is recommended that: A proleptic consultant appointment is made with a general/endocrine surgery interest. This would be with the expectation of an increased workload consequent on rationalising provision of service. Such an appointment would enable appropriate sub-specialty training, mentoring and support to maintain, in due course, the existing tertiary referral practice patterns, particularly between Inverness and Aberdeen. The current practice of referring patients with special requirements to Aberdeen and of the Aberdeen endocrine surgeon travelling up to Inverness has many advantages and should continue. The combined number of thyroid and parathyroid operations in Elgin averages 9 per annum and this level of activity would not be appropriate once the current surgeon carrying out endocrine surgery retires. There is likely to be increased diagnosis of both benign and malignant endocrine disease with increased diagnosis on imaging and changes to routine biochemical analyses. There is evidence of systemic under diagnosis of parathyroid neoplasia in Grampian and more recently Highland. When serum calcium measurement was part of the routine serum biochemical analysis in NHS Highland there were four times as many 9

10 operations for primary hyperparathyroidism on a per capita basis than in NHS Grampian. With the withdrawal of this service the numbers in Highland have dropped dramatically and now match those of Grampian where serum calcium is not routinely measured. The argument made by laboratories that they do not provide a screening service is illogical when the spectrum of symptoms associated with hypercalcaemia is considered. Virtually any patient with sufficient symptoms to merit medical consultation merits measurement of the serum calcium, particularly with advancing age. A policy change in the North of Scotland is required to address the under diagnosis of hypercalcaemia with its consequent adverse patient outcomes. There is the potential to increase collaboration between endocrine and ENT services in Grampian. This would increase the available consultant workforce and improve ENT training in thyroid surgery. It is essential that this be a collaborative not competitive development, building on existing nationally recognised excellence in clinical, research and audit practice. ENT expertise in assessment of laryngeal function and for multidisciplinary management of the, fortunately, rare patient with extensive malignant disease are areas of potential benefit. This already takes place with the Cardiothoracic surgeons on an ad-hoc basis. Audit and quality assurance The endocrine services in the North have a strong audit base and track record in the monitoring of activity and outcomes. This standard must not simply be sustained but enhanced by utilising improved IT resources. It is recommended that: All endocrine operations should be audited and prospectively recorded on a database that populates the national registry. The thyroid clinic/cancer management database currently under development in collaboration with Dendrite Ltd. be supported. The implementation of a regional web-based audit tool is supported by the IT services and clinical teams. This web-based tool will collect against an agreed audit dataset and integrate with national databases to reduce duplication of input. This report provides a timely opportunity to consolidate the delivery of endocrine surgery in the North of Scotland by building on and developing the pre-existing services and networks. 10

11 Appendix 1 Endocrine review recommendations Organisation of the service 1. It is recommended that the North of Scotland Endocrine Service be formally constituted as a Managed Clinical Network within the parameters and guidance of CEL 29 (2012). Embedded in this structure are mandatory requirements for a clinical lead, management support and dedicated administrative resource. 2. The endocrine services should review and update referral guidance for primary care. Specifically, referrals systems should be electronic, with guidance for referrers on investigations required prior to out-patient attendance. 3. Patients referred to an endocrine service for tumour management should have access to the following: o A surgeon o An endocrinologist o An oncologist and/or a nuclear medicine physician o With support from a pathologist, and cytologist (these could be the same individuals) radiologist a specialist nurse (this need is infrequent and could be incorporated into the role of an existing nurse specialist) 4. The NHS Grampian Joint Thyroid Clinic requires a re-design to improve access to diagnostic, endoscopic and imaging services for patients. Re-location to Clinic E would provide improved infrastructure and space with opportunities for collaboration with ENT services. 5. Improved support, training and audit across the North is recommended to maintain and improve the quality of thyroid cytology (FNAC) with the introduction of selective ultrasound guided FNAC in the outpatient clinic. 11

12 The regional MDT 6. Endocrine and thyroid cancer and other complex endocrine cases should be discussed at the MDT and where appropriate referred to the regional centres at Aberdeen and Dundee, as at present. 7. The frequency of the current thyroid cancer MDT should increase to monthly and its remit should be extended to include complex endocrine cases (both malignant and non malignant). 8. The current MDT has no dedicated organisational or administrative support. This needs to be addressed urgently. Treatment and follow up 9. Surgeons performing thyroid surgery must work within the MDT structure and perform more than 20 cases per annum. 10. Due to the complexity of procedures related to the treatment of phaeochromocytoma and other functional tumours these should be managed in Aberdeen or Dundee. 11. Intra-operative PTH measurement needs to be considered for parathyroid surgery as it has the potential to improve the surgical outcome and increase proportion of operations done as day cases. The feasibility of sharing this equipment across the 3 services in the North should be explored. 12. Intra-operative laryngeal nerve monitoring is becoming more commonly used in thyroid surgery and although the evidence for its routine use is weak it is likely that the introduction will become irresistible if only for the practice of defensive medicine. 13. Although endocrine cancers are relatively rare the natural history, with the exception of anaplastic thyroid cancers, is much longer than most cancers and recommended follow-up is life long. Services should review clinic facilities and the resources required to ensure that followup is sustainable. 14. Where appropriate the services should explore other means of followup for some patient groups. For example it may be appropriate to follow up parathyroid cases in primary care with the appropriate blood tests. Where such follow-up takes place out of secondary care appropriate monitoring and safety nets must be put in place. 12

13 15. Parathyroid neoplasia is currently under diagnosed as a consequence of the withdrawal of routine serum calcium estimation to the detriment of patients. It is recommended this be reintroduced. Workforce 16. The specialist surgical skill base needs to be maintained across the three mainland boards, with surgical staff from the different units collaborating in the most complex cases. 17. To address the projected increase in activity in the surgical endocrine service in Aberdeen, it is recommended that a proleptic appointment of a general surgeon with expertise in endocrine surgery be made. 18. The increase in surgical activity will require increased operating time and this will coincide with the operating theatre development in Aberdeen. An interested ENT surgeon in Aberdeen should be identified to join the endocrine team to provide relevant expertise and improve training for ENT trainees in Aberdeen. 19. Endocrine surgery should only take place in Aberdeen, Dundee and Inverness. Audit 20. A regional web-based audit tool is currently being developed to replace the existing system in Aberdeen. This is in collaboration with the clinical services and a third party developer (Dendrite) but will require support by the IT services in NHS Grampian and potentially the other Health Boards when implemented. 13