Essex Cancer Network

Transcription

1 Thyroid NSSG Constitution Version 2 July 2012 Date NSSG Sign Off Date Essex Cancer Network Board Sign Off Signed (Chair H&N NSSG) 17 th July 2012 Signed (Chair ECN Board) Date for Review July 2013 Draft Version No 2 1

2 Title: Thyroid Cancer: Referral, Diagnosis and Management Guidelines. Authors: Members of the Thyroid Site Specific Group Document Owner: Swift House Hedgerows Business Park Chelmsford Essex CM2 5PF This document: July 2012 Draft Version No 2 2

3 Thyroid NSSG Constitution Agreement Cover Sheet This Constitution has been agreed by: Position: Name: Organisation: Chair of the Thyroid NSSG Mr Frank Stafford- Consultant ENT Surgeon Mid Essex Hospitals Trust Date Agreed: Position: Name: Organisation: Chair of the Head and Neck NSSG Mr Jonathan Philpott- Consultant ENT Surgeon Southend University NHS Foundation Trust Date Agreed: Position: Name: Chair of the Network Board Sheila Bremner- Chief Executive Organisation: NHS North Essex. Date Agreed: 17 th July 2012 Draft Version No 2 3

4 Contents Introduction... 5 Role and Function of Group... 5 Format, Frequency & Links... 6 Roles & Responsibilities of the NSSG:... 6 Change Management... 6 Service Improvement/Redesign... 6 Service Quality Monitoring and Evaluation... 6 Workforce Development... 7 Research and Development... 7 Work Plan and Annual Report... 7 Role of NSSG Chair... 7 Network support... 8 User Involvement... 8 Introduction Organisation of Thyroid Services in Diagnostic and Pre-treatment Services and Guidelines Imaging Guidelines: Multidisciplinary Team arrangements in ECN Histopathology(11-1c-108i) Follow-up Research and Audit Rehabilitation and Cancer Survivorship Palliative Care Teenagers and Young Adults Appendix A Membership of the single ECN Thyroid Cancer Specialised MDT Appendix B Hurtle Cell Thyroid Cancer Treatment Algorithm Draft Version No 2 4

5 Introduction In line with the Calman Hine report (1995), NHS cancer Plan (2000), NICE Improving Outcomes Guidance (IOG) for Head and Neck Cancers, Cancer Reform Strategy (2007) the purpose of this document is to provide clarity on the organisation and management of patients with Thyroid Cancers in (ECN). The Board is asked to formally approve this document on behalf of all its constituent organisations thereby ensuring uniformly high quality in primary, secondary and tertiary centres for all its patients, compliant with national guidance. The constitution should be regarded as a template for best practice. The overriding principle within is that all patients with Thyroid Cancer are treated by members of a local/specialist multi disciplinary team. Role and Function of Group The representation on the Group is such that the Network Board agrees to authorise it as the primary source of the Network s clinical opinion on matters relating to Thyroid Oncology. It is the group with delegated corporate responsibility from the board for ensuring coordination and consistency across the network on cancer policy, patient pathways, practice guidelines, audit, and research and service improvement and for the implementation of the thyroid measures and for ensuring consistency in thyroid oncology practices across the network. It will consult with relevant cross cutting groups on issues relating to Thyroid oncology for example the medicines management board, Radiotherapy Board, imaging and Pathology groups and the Palliative care board. Quorum A quorum will be no fewer than 8 core members provided that the Chairman or Deputy Chairman is present. Agenda Regular agenda items: Work Programme & Service Delivery Plan Audit and update on audit actions Peer review Research New Business Minutes Minutes will be taken and circulated to the group within 1 month following the meeting by a member of the network admin team. Copies will also be forwarded to the network board and commissioning director s forum. Copies will also be available on the open section of the ECN website. Draft Version No 2 5

6 Format, Frequency & Links Meetings will be held no less frequently than twice a year at Offices. The agenda will be circulated prior to the meeting. Roles & Responsibilities of the NSSG: Service Planning The NSSG should ensure that service planning: Is in line with national guidance/standards Promotes high quality care and reduces inequalities in service delivery Takes account of the views of patients and carers Takes account of opportunities for service and workforce redesign Establishes common guidelines/protocols The NSSG should Recommend priorities for service development to the network board Ensure decisions become integrated into constituent organisational structures and processes Change Management The NSSG should Discuss the most recent/proposed changes in practice Changes may include operational procedures, clinical practice, staff, equipment or facilities Agree action and implementation plans and timescales Where appropriate undertake risk analysis of the change Where necessary amend standard operational procedures/written protocols Service Improvement/Redesign All The NSSG and individual cancer teams should commit to service improvements. Process mapping and capacity and demand analyses should become part of the norm. Requests for additional resources from the network should be accompanied by evidence of involvement in service improvement/redesign. The NSSG should develop/approve high quality information for patient, for use across the network. Including the review of information to be uploaded to the patient information prescriptions. Service Quality Monitoring and Evaluation The NSSG should: Agree on a minimum dataset for common data collection; where possible and appropriate; but go beyond this where possible. Review the quality and completeness of data, recommending corrective action where necessary. Produce audit data and participate in open review. Ensure services are evaluated by patients and carers. Draft Version No 2 6

7 Monitor progress on meeting national cancer measures and ensure agreed action plans following self-assessment/peer review are implemented. Workforce Development The NSSG should: Consider the overall workforce requirements for the Network. Consider the education and training needs of teams and, where appropriate, of Individuals. Liaise with the Network Board and with the Workforce Development Confederation to ensure that appropriate workforce numbers and CPD are available. Develop common recruitment/retention strategies. Take account of opportunities for skill mix changes. Research and Development All patients should be considered for inclusion in clinical trials and other well designed research studies. Research nurses at each site are encouraged to attend MDTs and out patients to facilitate recruitment into studies. The Cancer Research Network Manager and or Clinical Lead for Research attend the NSSG to provide reports on recruitment and the current portfolio of research trials available. The NSSG will regularly review and agree studies available and identify a lead responsible for ensuring recruitment into clinical trials and other well designed studies is integrated into the function of the NSSG. There will be a requirement to produce remedial action plans where recruitment in to the network agreed list of plans is below agreed numbers. Work Plan and Annual Report The NSSG should: Draw the above together in to a 3 year work plan in the context of a prioritised clinical governance development plan, for approval by the network board. Ensure this is fed into commissioning, with agreements specifying standards, service developments and improvement, data collection, audit, research, education and training. Provide an annual report of activity to feed health economy clinical governance reporting processes. Role of NSSG Chair The term of office for the Chair will be 3 years duration. The post holder will be elected by a majority vote of the full membership of the NSSG and ratified by the Medical Director and Director of the Cancer Network. It will be the responsibility of the Medical Director to ensure the post is filled at all times. The current Chair is Mr Frank Stafford; he will have a Review with the Medical Director of the Network at least once per year. Responsibilities of the NSSG Chair include: To ensure a multi-professional Network-wide site specialist group is established with membership in accordance with Peer Review guidance and the manual for cancer services. Draft Version No 2 7

8 To ensure that the group meets regularly (2 times per annum minimum) and provides minuted records of meetings which are disseminated to the members and to the ECN board and commissioning directors forum. To appoint leads within the group for trial recruitment, audit, data/information and service improvement, and other leads as deemed necessary. To organise working groups and receive reports as appropriate. To agree a constitution and network clinical guidelines and to review both annually. To provide an annual report which will include activity, targets, organisation of services, NICE, and Peer Review and including key audit findings, service improvement, research participation and educational events. The annual report should include a review of the work plan and outline time scales for future activity. To agree a 3 year work plan based on the conclusions of the annual report and in line with the network capacity expansion plans. To meet regularly with the Medical Director of the ECN with whom they will also have a formal annual review. To participate in relevant Network meetings and to represent the NSSG in any other network, regional or national activity as required. Network support Managerial support The ECN Network Team has nominated a member of the management team to work with the NSSG. The NSSG is currently supported by Sue Maughn and Kate Patience. The role of the Network management team is to support the NSSG Chair as required to help develop a fully functional NSSG including guidance on the content and process of Peer Review and Improving Outcomes; a strategy for Cancer. Administrative support The Network Team; Jill Butten/Tara Large will provide administrative support as required, for example co-ordinating meetings; type minutes/agendas (however the Groups will need to provide someone with a clinical background to take the minutes at each meeting); prepare and plan audit days; assist with the co-ordination of Peer Review evidence and circulate documents/papers etc. User Involvement The NSSG aims to involve user representatives when planning and reviewing its work-streams. It also ensures that services are evaluated by patients and carers. The Chairman of the NSSG, together with the ECN User Involvement facilitator, will endeavour to ensure user representation on the group. Anne Hill is the NHS employed members of the NDSG nominated as having specific responsibility for user issues and information for users and carers. They will also ensure users views are obtained as necessary. Draft Version No 2 8

9 MEMBERSHIP OF THE NSSG (11-1c-104i) Colchester Mr Backhouse Dr Skelly Dr Lamont Sally Philpott (responsible for patient issues and user/carer information) Mr McRae Chelmsford Mr Smith Mr Ross Dr Loo Mr Stafford (Chair) Dr Mahir Petkar Sonia Mccomb (responsible for patient issues and user/carer information) Southend Mr Philpott Mr Watters (Vice Chair) Dr Kelly Dr Madhavan (Research lead) Anne Hill (responsible for patient issues and user/carer information) Alternate: Dr Metcalf Basildon Dr Khan Mr Jeddy Dr Ahmed Mr Kader Ipswich Dr Crase User Members Michael Scanes Nuclear Medicine specialist ECN User Involvement Lead Research Members Ashley Solieri Essex Cancer Research Network Manager Cancer Network Members Sue Maughn Alan Lamont Netty Wood Network Director Lead Clinician Network Pharmacist Draft Version No 2 9

10 Introduction Thyroid cancer is relatively rare with an incidence of 3.3 new cases per 100,000 within England. It is the eighteenth commonest form cancer in women. The reported incidence has doubled in the last 15 years for differentiated cancer. Improved outcomes would suggest that specialist teams should be managing thyroid cancer. Organisation of Thyroid Services in All four acute Trusts in ECN provide diagnostic services relating to Thyroid cancer. The referring population is from the 4 PCT s that make up the ECN. Name of Hospitals Mid-Essex Hospitals Trust Colchester Foundation Trust Hospitals Basildon and Thurrock Hospitals NHS Foundation Trust Southend Hospital NHS Foundation Trust TOTAL: Population as at ONS. Local Teams Referring PCTs a) Mid-Essex PCT b) North-East Essex PCT c) South West Essex PCT d) South East Essex PCT Population Served a) 377,828 b) 325,152 c) 421,684 d) 362,896 1,487,560 Table A: Thyroid Cancer Lead Clinicians Centre Lead Endocrinologist Lead Surgeon(s) Basildon Hospital Dr Khan Mr Taleb Jeddy Mr Abdelkader Southend Hospital Dr K Metcalfe Mr Philpott / Mr Gavin Watters Mid-Essex Hospital Mr F Stafford / Mr S Smith / Mr Ross Colchester Hospital Dr R Skelly Mr A Maheshwar Mr D McRae Mr C Backhouse Lead Oncologist Dr Imtiaz Ahmed Dr Madhavan Dr Vivienne Loo Dr C Scrase (Ipswich) Dr C Scrase (Ipswich) Dr A Lamont Cytopathologist Dr Al-Sanjari Dr Konrad Wolfe Dr Mahir Petkar Dr Ian Seddon Diagnostic and Pre-treatment Services and Guidelines Referrals by general medical or dental practitioners should be sent by Fax on the specific cancer referral forms. This will ensure the referral is prioritized appropriately and will be seen under the 2 week wait initiative. The Fax numbers for referral are as follows: Southend Fax No. (01702) Basildon/Orsett Fax No. (01268) Draft Version No 2 10

11 Colchester Fax No. (01206) (01206) Chelmsford Fax No (01245) Urgent cancer referrals will be seen by a clinician member of the thyroid cancer subgroup within 2 weeks. Thyroid cancer referral Patients with thyroid cancer are likely to present with a lump in the neck, usually with no other signs or symptoms. However, thyroid lumps are relatively common and the great majority are not malignant so appropriate referral by general medical practitioners is important. Criteria for urgent referral to a designated thyroid surgeon (see membership of sub-group) or the neck lump clinic are given below. Solitary thyroid nodules increasing in size Family history of thyroid cancer Previous neck irradiation Voice change or hoarseness associated with a goitre Thyroid mass with cervical lymphadenopathy Thyroid mass with stridor All patients with a thyroid mass should have thyroid function tests done by their General Practitioner. Patients who are hyperthyroid are very unlikely to have cancer and should not be referred to the thyroid/head and neck cancer service. Such patients should be referred to an endocrinologist. Neck lump/thyroid clinic Patients with a thyroid lump with features which are suspicious of malignancy will be seen in a rapid access diagnostic neck lump/thyroid clinic. Clinic Details Basildon Southend Colchester Chelmsford Neck Lump Clinic in place every Thurs AM Neck Lump Clinic in place every Friday PM There are 3 specific clinics a month which are now designated as neck lump clinics. (1 st 2 nd 4 th and 5 th Thursday afternoon.) Weekly Neck lump clinic every Friday. Protocol for cancers diagnosed incidentally by non-mdt core members. Patients with a thyroid/neck lump in whom cytology is diagnostic or suspicious of thyroid malignancy should be referred to a designated thyroid surgeon for further investigation. Patients who have an unexpected diagnosis of a thyroid cancer after biopsy by a non-designated clinician should be seen by that clinician and the CNS to be informed of the diagnosis. The patient should then be referred to the most appropriate clinician who is a core member of the MDT and booked into the next MDT meeting and clinic. Draft Version No 2 11

12 Pre-Treatment Assessment/Investigation Unlike patients undergoing surgery for UAT carcinoma many patients undergoing thyroid surgery will not have a definitive diagnosis of malignancy based on biopsy. Ultrasound may be considered. Patients undergoing surgery should have MRI neck performed pre-operatively. The following investigations should be carried out in patients undergoing thyroid surgery for a solitary nodule or a rapidly enlarging goitre. Thyroid function and antibodies Serum calcium Serum calcitonin (if possible medullary carcinoma) Assessment of vocal cord mobility Imaging Guidelines: (11-1c-106i) Imaging guidelines are consistent with RCR irefer version 7. Diagnosis: Thyroid US, used in combination with or to guide FNAC. Staging: US and MRI are indicated for use in the staging of thyroid cancers. If CT of the chest is indicated this needs to be undertaken without contrast enhancement. They are used to assess large primary tumours, to detect distant metastases and for medullary thyroid carcinoma in endocrine neoplasia syndromes. Role of PET/CT Scanning PET/CT is indicated only in specific circumstances for the management of thyroid malignancy. Post Thyroidectomy: Whole body 131-I scintigraphy is useful for the detection of residual/recurrent differentiated thyroid cancer after thyroidectomy. Scintigraphy following 131-I ablation treatment will show treated extra-thyroidal deposits. Multidisciplinary Team arrangements in ECN A single IOG compliant Essex-wide Thyroid Cancer MDT has been established serving the four ECN localities and a population of over 1.48 million. The SMDT meets fortnightly (Friday morning) and is hosted by MEHT. Draft Version No 2 12

13 The SMDT discusses preoperatively all new Thy 3 and above suspected or proven cancers, postsurgical cases and recurrences across the 4 ECN localities. Any other cases planned for surgery where evidence suggests malignancy is possible should be discussed. Non-Surgical Treatment Radiotherapy treatments are provided in the two ECN centres i.e. Southend and Colchester. Chemotherapy treatments are provided locally in Southend, Colchester and Broomfield. Treatment guidelines The ECN Thyroid NSSG has adopted the ENT UK Guidelines as their agreed clinical guidelines for the treatment of thyroid cancer. This document can be found by following the link: Medullary Thyroid Cancer Patients within ECN with MTC are currently treated at tertiary centres. The Thyroid NSSG have agreed that this work will be centralised within Essex in 2012/13, and this forms part of the work programme. Network Agreed Policy For Named Surgeons Authorised to Perform Lymph Node Resections (11-1c-109i) The NSSG policy is that only named surgeons in the network are authorised to perform lymph node resections on thyroid cancer patients. All of these surgeons must be core members of the Thyroid SMDT. The designated surgeons are:- Mr Abdelkader Mr Maheshwar Mr Philpott Mr Stafford Mr Watters Please note: This policy does not apply to the simple excision of lymph nodes for diagnosis. Metastases For the management of patients presenting with suspected or confirmed malignant spinal cord compression the ECN MSCC pathway should be followed. This can be found by following the link below. ( CNS/ECN%20Brain%20%20CNS%20%20Constitution%20version1.2%20doc pdf) All patients with thyroid lung metastases will be discussed in the multidisciplinary team. The primary aim is to identify patients with potentially resectable disease. A staging algorithm and the possible need for neoadjuvant chemotherapy should be agreed with the cardiothoracic centre. All patients where the MDT feel the disease is potentially operable should be referred to the specialist centre. The NSSG currently refers to the cardiothoracic centre in Basildon. Draft Version No 2 13

14 Histopathology(11-1c-108i) The NSSG has agreed network wide pathology guidelines for the diagnosis and assessment of thyroid cancer. The guidelines address: Laboratory and histopathological / histochemical investigations Their specific indications Which parts of the investigational protocol should be the responsibility of the local Diagnostic and Assessment Service and which should be that of the MDT A policy whereby any diagnostic biopsy sample that shows or is thought to show thyroid cancer is sent for review to a histopathologist core member of the thyroid MDT The guidelines are distributed to the designated clinicians for thyroid cancer. The NSSG has adopted the Royal College of Pathologists guidelines as follows: Guidance on reporting of thyroid cytology specimens: Dataset for thyroid cancer histopathology reports: b06.pdf The following policy also refers. 1. Any pathology to the point at which cancer is diagnosed is the responsibility of the local diagnostic and assessment service. Responsibility for any subsequent surgery lies with the MDT. 2. Any diagnostic biopsy sample that shows or is thought to show thyroid cancer is sent for review by Dr Petkar or Dr Davis at MEHT the host of the thyroid SMDT. Follow-up All patients are seen for routine follow-up in the designated thyroid cancer clinic or the head and neck clinic with a core member of the MDT. Urgent referral can be arranged through the CNS or head and neck secretary (as above). For differentiated thyroid cancer, patients should have serial thyroglobulin measurements For medullary carcinoma serum calcitonin levels can be measured. Follow-up should be 6 monthly for 2 years then yearly for life. Draft Version No 2 14

15 Research and Audit Regular audit is undertaken, both in terms of clinical outcomes and patient satisfaction with the service. The results of audit projects are presented at annual clinical audit meetings. Any resulting improvements in clinical care or quality of service are implemented and subject to reaudit. In addition to audit presentations these meetings include a clinical lecture, often given by an invited speaker from outside the Essex head and neck cancer group. Also, there is an annual thyroid clinical/academic meeting for Essex. Thyroid Cancer is rare, any meaningful research, particularly randomized prospective trials, need to be carried out nationally on a multicentre basis. Such trials are to be encouraged and the ECN thyroid NSSG have expressed an interest to take part in any suitable NCRN accredited trials. A current list of research trials can be found at: The Thyroid NSSG lead for research and clinical trials is Dr K Madhavan (consultant oncologist). Rehabilitation and Cancer Survivorship All patients should be assessed for their rehabilitation needs throughout the cancer pathway. The National Cancer Action Team produced site specific Rehabilitation Care Pathways in The ECN Rehabilitation Board will develop a rehabilitation pathway specific to thyroid cancer, as this has been historically been embedded within the Head & Neck cancer rehabilitation Pathway. This document will list the signs and symptoms that should be referred on to local Allied Health Professionals for specialist assessment and treatment at various stages of the pathway and should be used by all health care professionals working with the patient. Referrals to appropriate local rehabilitation services should be made following holistic assessment which should pick up all issues that require AHP intervention. A list of all local rehabilitation services and their contact numbers can be found on the website on the Rehabilitation Board section. Patients with Malignant Spinal Cord Compression from bone metastases should have access to neurorehabilitation facilities in line with the ECN Neurorehabilitation Operational Policy. Palliative Care A contact with the palliative care team should be established early within the patient pathway where a palliative diagnosis is given. This is generally initiated by the cancer nurse specialist. The majority of referrals to palliative care occur after the patient has an established diagnosis and treatment plan. However, in the unusual situation where it is appropriate to refer a newly diagnosed patient directly to palliative care the patient will still be discussed at the thyroid cancer MDT. The palliative care services comprise hospital and community based specialist palliative care teams which have medical and nursing support, and both hospice and hospital based in-patient facilities. They also offer specialist palliative day-care facilities and, in most areas, a hospice-athome service for terminally ill patients who wish to remain at home to die. The palliative care services accept referrals from any members of the cancer MDTs, general practitioners and district nurses, as well as directly from patients and carers, in which case the consent of the relevant primary clinician is sought. The hospital Macmillan teams can be contacted on the following numbers: Basildon ext Chelmsford Draft Version No 2 15

16 Colchester Southend Community palliative care and hospice services can be accessed according to the patient s home address: North Essex: St Helena Hospice Mid Essex: Farleigh (Mid Essex) Hospice South East Essex: Fairhavens Hospice (in-patient unit) (community team) South West Essex: St Luke s Hospice (in-patient unit) Community Team Many aspects of palliative care are applicable not only late in the course of the disease but earlier especially in conjunction with anti-cancer treatments thus early referral to the service are encouraged. Later in the disease process terminal care is easier where patients have already established contacts within the system. Priority will be given to seeing that clinic letters and MDT decisions are communicated to all professionals involved in the care of the patient including the palliative care teams. The Thyroid Cancer specialist will be involved. Nonspecific symptoms such as general debility, lethargy and/or weight loss are generally resistant to specific anti-tumour therapy, careful attention to general palliative care areas such as pain control, medications, housing, social, spiritual and psychological support may be more useful. Integration of palliative care services is a planned aspect of our thyroid cancer management, involving hospital and community based clinical nurse specialists, consultant palliative medicine support and hospice liaison Teenagers and Young Adults MDT: For each patient within the TYA group (16-24), the MDT should agree the following decisions with the TYA MDT at UCLH (Primary Treatment Centre) and record them as part of the patient s joint treatment planning decision: The multidisciplinary treatment planning decision i.e. to which modality(s) of treatment: surgery, radiotherapy, chemotherapy, biological therapy or supportive care or combination of the same, they are to be referred to for consideration. The named consultant in charge of each modality of definitive treatment and the named person in charge of organising arrangements for the age- appropriate support and care environment including those when the treatment is delivered outside the PTC facility. For those in the age range 16 to the end of their 18th Birthday should be treating in the PTC. For those in the age range 19 to the end of their 24th birthday may choose where they receive the treatment, which can be at the PTC or at a named designated hospital for TYAs. The treatment location should be should be recorded in the patients treatment plan. Draft Version No 2 16

17 Membership of the single ECN Thyroid Cancer Specialised MDT Appendix A ESSEX CANCER NETWORK THYROID CANCER SPECIALIST MULTI-DISCIPLINARY TEAM CORE MEMBERSHIP March 2012 IOG MINIMUM REQUIREMENT CORE MEMBER COVER ARRANGEMENTS Endocrinologist Dr Rehman Khan Dr Karl Metcalfe Dr Rob Skelly Dr Phil Kelly Surgeons Mr Gavin Watters Mr Francis Stafford Mr Maheshwar Mr Abdelkader Mr Jonathan Philpott Mr Jonathon Philpott Mr Simon Smith Mr Duncan McRae Mr Taleb Jeddy Mr Gavin Watters ONCOLOGISTS Dr Alan Lamont Dr Madhavan Dr Vivienne Loo Dr Imtiaz Ahmed PATHOLOGISTS Dr Petkar Dr Davis RADIOLOGISTS Dr Ganeshlingam Dr Agarwal CLINICAL NURSE SPECIALISTS Anne Hill Sally Philpott Julia Morley Sonia McComb PALLIATIVE CARE SPECIALIST MDT CO-ORDINATOR / TEAM SECRETARY/Data manager Research Tbc Angela Gakis Dr K Madhavan Draft Version No 2 17

18 Appendix B Hurtle Cell Thyroid Cancer Treatment Algorithm Draft Version No 2 18