NATIONAL STANDARDS FOR TEENAGERS AND YOUNG ADULTS WITH CANCER AGED YEARS

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1 NATIONAL STANDARDS FOR TEENAGERS AND YOUNG ADULTS WITH CANCER AGED YEARS 1

2 CONTENTS INTRODUCTION TO THE NATIONAL CANCER STANDARDS... 3 PURPOSE OF STANDARDS... 4 METHODOLOGY... 4 FORMAT... 4 EPIDEMIOLOGY OF CANCER IN TEENAGERS AND YOUNG ADULTS... 6 INCIDENCE... 6 MORTALITY... 7 SURVIVAL TRENDS... 8 TOPIC: ORGANISATION... 9 OBJECTIVE 1: TO STRUCTURE CANCER NETWORKS SUCH THAT THEY BRING TOGETHER KEY STAKEHOLDERS IN BOTH PLANNING AND PROVIDING CANCER CARE WITHIN AN OPEN, TRANSPARENT MANAGEMENT STRUCTURE OBJECTIVE 2: CARE PROVIDED BY TEAMS SHOULD BE WELL CO-ORDINATED TO PROVIDE AN EFFICIENT, EFFECTIVE SERVICE TO PATIENTS TOPIC: PATIENT-CENTERED CARE OBJECTIVE 3: TO ENSURE THAT PATIENTS AND OR THEIR CARERS HAVE SUPPORT AND ALL THE INFORMATION THEY REQUIRE REGARDING THE DIAGNOSIS, TREATMENT OPTIONS AND TREATMENT CARE PLAN TOPIC: MULTIDISCIPLINARY TEAM OBJECTIVE 4: TO ENSURE THAT CANCER CARE FOR YOUNG PEOPLE IS PROVIDED BY A SPECIALIST MULTIDISCIPLINARY TEAM TOPIC: INITIAL REFERRAL AND TIMES TO TREATMENT OBJECTIVE 5: TEENAGERS AND YOUNG ADULTS WITH CANCER SHOULD BE REFERRED, DIAGNOSED AND TREATED IN A TIMELY AND APPROPRIATE FASHION OBJECTIVE 6: TEENAGERS AND YOUNG ADULTS WITH CANCER SHOULD BE DIAGNOSED, STAGED AND TREATED PROMPTLY AND IN-LINE WITH BEST PRACTICE GUIDELINES OBJECTIVE 7: TO ENSURE THAT ALL TEENAGERS AND YOUNG ADULTS RECEIVE ADEQUATE ASSESSMENT OF, AND PROVISION FOR, PALLIATIVE CARE NEEDS AT ALL TIMES AND IN EVERY SETTING. THIS INCLUDES CARE OF DYING PATIENTS, THEIR FAMILIES AND CARERS APPENDICES APPENDIX 1 The Children and Young People s Specialised Services Project APPENDIX 2 Membership of the Standards Working Group APPENDIX 3 - The Role of the Key Worker (Table 7 NICE Improving Outcomes for Children and Young People with Cancer) APPENDIX 4 Glossary Acronyms

3 INTRODUCTION TO THE NATIONAL CANCER STANDARDS These cancer standards are based on the National Institute for Health and Clinical Excellence (NICE) service guidance for Children and Young People with Cancer published in The standards have been developed to provide a foundation for the NHS in Wales to plan and deliver effective high quality services for older teenagers and young adults (TYA) with cancer aged 16 to 24 years inclusive. Standards for children aged 0 up to and including 15 years of age have also been published 2. Cancers in young people are rare. Historically, cancers in teenagers aged 16 to 18 have been managed by experts in paediatric cancers or other adult cancer site specific teams. In the NICE Service Guidance for Children and Young People with Cancer 3 there is recognition that there are biological and epidemiological differences in the cancers that occur in teenagers and young adults compared to those occurring in adults or children and there may also be different psychological and social needs in these patients. The key underpinning principle to the NICE service guidance, reflected in these standards, is to provide care safely as locally as possible, not locally as safely as possible. Teenagers and young adults should be offered treatment in dedicated age appropriate facilities with the support of other patients of similar age. In future, these facilities will be provided in a Principle Treatment Centre (PTC). This may mean travelling significant distances but clinicians should not assume that patients will not wish to travel and should offer patients choice on the place of care. The significant contribution of a number of charities that have specialised in supporting teenagers and young people with cancer and their families is fully acknowledged. This partnership with the NHS has resulted in additional appointments of key staff and facilities that have improved the quality of care available, whether that be at home, in a TYA designated hospital or within a PTC. Standards for imaging, pathology and treatment modalities are detailed in the cancer-site specific National Cancer Standards (2005) for services to adult patients 2. In common with these previous publications, there are a number of generic standards which Local Health Boards (LHBs) are responsible for, but are wider than one organisation s remit. These would most efficiently and practically be 1 National Institute for Health and Clinical Excellence (2005) Cancer Service Guidance: Improving Outcomes in Children and Young People with Cancer The Manual. London: NICE. Available from National Institute for Health and Clinical Excellence (2005) Cancer Service Guidance: Improving Outcomes in Children and Young People with Cancer The Manual. London: NICE. Available from 3

4 implemented by Cancer Networks on behalf of their constituent statutory organisations. PURPOSE OF STANDARDS Implementation of these standards will ensure access to high quality cancer services for teenagers and young adults across Wales. The standards require participation in national clinical audit which is the basis of benchmarking current services and informs the development of robust future services to meet the specialised health needs of young people. Current cancer services for teenagers and young adults will already be compliant with a number of these standards however some services will need to change to reach the required standard of care. On publication, the Welsh Government will indicate to Local Health Boards when full compliance to the standards will be required. METHODOLOGY Standards for Children and Young People were initially developed by the Children and Young People s Specialised Services Project. This work is summarised in Appendix 1. As a result of the NICE Improving Outcomes Guidance 1, the Cancer National Specialist Advisory Group (Cancer NSAG) was tasked with developing draft standards as part of the Welsh Government s series of National Cancer Standards first issued in To take this forward the Cancer NSAG set up an advisory group of specialists involved in the treatment of teenagers and young adults with cancer (Appendix 2). The Lead Clinician of the NICE Service Guidance Development Group was also a member of the Cancer NSAG TYA advisory group, and the Cancer NSAG and their clinical advisers have worked closely with the Department of Health clinical advisory group to ensure that the same level of specialisation is developed in both Wales and England. This is important both for those patients who have to travel across the border to receive their treatment and for the sustainability of services provided in Wales. The National Standards for Teenagers and Young Adults with Cancer should be read alongside the other requirements for children published by the Children and Young People s Specialised Services Project 4. FORMAT These standards are in many cases highly technical with the key audiences being clinical teams that provide the required services and service planners. A summary version will also be made available specifically for parents/carers of teenagers and young adults with cancer. This will be developed with input from families and will be accessible alongside the standards technical document via the internet. 4 CYPSS 4

5 The standards are presented as a series of Topics. These address the organisational requirements that are key to effective delivery of care and then follow the main stages in the patient journey. Within each Topic, a Rationale is presented that provides the context to the specific standards that follow. Attached to each standard are examples of monitoring criteria. These examples are indicative of the monitoring that will be required. Performance against the standards needs to be based on robust evidence. To achieve this monitoring of compliance uses information on key aspects of service provision collated over a year rather than at a single time point. A separate comprehensive on-line monitoring tool is being developed and will be made available to LHBs to allow uniform self-assessment. 5

6 EPIDEMIOLOGY OF CANCER IN TEENAGERS AND YOUNG ADULTS INCIDENCE Figure 1 shows the incidence of cancers occurring in teenagers and young adults aged 16 to 24 years over the 15 year period 1995 to Overall the numbers of cancer diagnoses per year are small. Such small numbers result in large variation in incidence rates year on year. Of the 1196 cancer patients registered during this time period, approximately 40% were diagnosed with either a leukaemia, lymphoma, or a cancer of the central nervous system. Gonadal and germ cell cancers along with carcinoma and melanoma account for nearly half of all teenage and young adult cancers in Wales. Each of the remaining cancer types individually account for less than 5% of the total. A young age of onset of cancer is one of the hallmarks of familial cancer syndrome and therefore, some consideration of a possible predisposition is important in these cases. Figure 1 Cancer Incidence for teenagers and young adults in Wales (16-24), % 22.7% 2.2% 9.4% 4.1% 4.3% 20.4% 10.0% Leukaemia Lymphoma Central Nervous System Sympathetic Nervous System Retinoblastoma Kindey Tumours Liver 0.7% Bone 0.0% 0.4% Soft Tissue Sarcomas Gonadal and Germ Cell Carcinoma & Melanoma Other Unspecified 0.4% 6

7 MORTALITY WCISU report that approximately 20% of patients diagnosed with cancer during the time period 1995 to 2009 had died by December Mortality for patients with leukaemia, lymphoma and CNS accounts for nearly half of the deaths.. The data on mortality are summarised in Figure 2. Figure 2 Cancer Mortality for teenagers and young adults (16-24) in Wales, % Leukaemia 22.3% 13.4% Lymphoma Central Nervous System Sympathetic Nervous System 1.1% 12.3% Retinoblastoma Kindey Tumours 0.0% 1.1% 7.8% Liver 1.6% Bone 9.3% 21.2% Soft Tissue Sarcomas Gonadal and Germ Cell 8.6% Carcinoma & Melanoma Other Unspecified 7

8 SURVIVAL TRENDS Comparison of survival data over the two 5 year time periods 1995 to 1999 and 2000 to 2004 show that there has been an improvement in 5 year relative survival for leukaemia (Figure 3). For teenagers and young adults diagnosed with leukaemia survival has increased but does not reach statistical significance. Relative survival in lymphoma is higher than that observed in leukaemia but shows a slight decrease over the two time cohorts this is due to the very small numbers involved resulting in large confidence intervals. Survival following cancers of the central nervous system was observed to decrease over the two time periods but, as with leukaemia and lymphoma these changes are not statistically significant. Figure 3 Five year relative survival for teenagers and young adults in Wales,

9 TOPIC: ORGANISATION OBJECTIVE 1: TO STRUCTURE CANCER NETWORKS SUCH THAT THEY BRING TOGETHER KEY STAKEHOLDERS IN BOTH PLANNING AND PROVIDING CANCER CARE WITHIN AN OPEN, TRANSPARENT MANAGEMENT STRUCTURE. RATIONALE: The needs of teenagers and young adults differ from those of children and the rest of the adult population, mainly in relation to the specific needs of individuals moving through the transition into adulthood. As cancers in this age group are rare, patients can feel isolated from their peers. The requirement for care to be provided in an age appropriate environment with a support network addresses these needs. The Cancer Network is an organisational association between primary, secondary, tertiary and voluntary services with care delivered by multidisciplinary clinical teams within a geographic area. Regular meetings between planners and providers as stakeholder organisations will facilitate review of service provision and ensure uniform standards of care are applied across the Network. Local Health Boards, working together through the Networks or the Welsh Health Specialised Services Committee as necessary, advised by its TYA sub-group will need to consider and agree any reorganisation of services where appropriate. Whilst working within the Cancer Network, the Chief Executives of all the partner organisations involved need to ensure proper governance arrangements are in place. These arrangements should clearly set out the roles, responsibilities and accountabilities of the individual organisations and will include both clinical and non-clinical aspects of governance. Where Accountable Officer responsibilities overlap then this need to be clearly set out also. Where a clinical team provides care to more than one organisation, clear agreements will be required between organisations about how clinical governance responsibilities are to be carried out. In relation to team working, the recommendations made at the team meeting are advisory, and the responsibility for clinical decisions and actions always rests with the senior clinician under whose care the patient is at that point of their journey. There are two Cancer Networks providing services for Teenagers and Young Adults with cancer living in Wales. Services provided for the North Wales population will continue to be co-ordinated by the Cancer and Children's Clinical Programme Groups of Betsi Cadwaladr University Health Board and, as a result of the service model in place, will also need to maintain formal links to the North West Region s Teenage and Young Adults Cancer Network. The 9

10 South Wales Cancer Network, that includes Powys, has a population that will support a Teenage and Young Adult Primary Treatment Centre (TYA PTC) and already hosts the Children s Hospital and a TYA Unit in Cardiff together with adult cancer services across the network. A TYA PTC would be expected to contain a single clinical multidisciplinary team (TYA PTC MDT). When referral of a teenager or young adult is made to an adult cancer site specific MDT, this cancer site MDT will be responsible for confirming the initial cancer diagnosis and formulating a treatment plan. This treatment plan must be confirmed with the TYA PTC MDT. Because of the rarity of some tumours in this age group and biological differences between patients, the TYA PTC MDT will advise the cancer site specific MDT on the appropriate paediatric or adult treatment protocol for individual patients based on the latest clinical trial where appropriate. When necessary, it will be important that specialists from the relevant adult cancer MDT join the core membership in the TYA PTC MDT meetings. The TYA PTC MDT will maintain a register of all cancers in the 16 to 24 year old age group, and be responsible for advising on access to age appropriate 5 supportive care not evident in adult services. The decision about whether care will be provided at the TYA PTC or locally will depend on the age of the patient and patient choice. The TYA PTC will be responsible for the transition of young people moving into adult services. Flexibility will be needed at the age boundaries (16 to 17 and 18+) 6 to ensure that decisions about where care is to be provided are made in the best interests of each patient. Teenagers between the ages of 16 to the end of their 17 th year should be treated in the TYA PTC. For patients aged 18 to 24 years, and involving discussion at the TYA MDT, care may be provided in the TYA PTC or designated TYA hospitals with specialist outreach and community nursing services that will form an essential part of keeping care local or at home. 5 Age-appropriate is used throughout this document. An exploration of the definitions of ageappropriate care in this context has been drafted by the department of health and is available on the CQUINS website: under the teenagers and young adults section. 6 These age cohorts align with the Welsh National Service Framework for Children and Young People (2005)( but are in contrast to the NICE Children and Young People with Cancer IOG age cohorts which follow the definitions in the English NSF for Children, Young People and Maternity (2004) ( ). 10

11 The Cancer NSAG will continue to support the development of information, best practice and benchmarking performance via clinical audit with Cancer Networks across the UK. 11

12 STANDARD 1.1 LHBs working through their Cancer Networks designate Principal Treatment Centres for teenagers and young adults (TYA PTC) 8 which provide dedicated inpatient and daycare facilities. Designation is in writing, taking account of NICE guidance with advice from the Cancer Network s TYA subgroup. 1.2 The LHBs working through their Cancer Networks designate TYA hospitals that provide care to the level agreed with the TYA PTC for patients aged 18 to 24 years. Designation is in writing, taking account of NICE guidance with advice from the Cancer Network s TYA subgroup. 1.3 Each Cancer Network has a named lead clinician with a job description agreed by the Network Board. 1.4 Patients aged are treated in the TYA PTC. Those aged are offered the choice to be treated in the PTC or in a TYA designated hospital 1.5 The Cancer Network membership, management arrangements and accountability are documented. The membership of the Cancer Network and its TYA subgroup reflect the multiprofessional and multi-organisational nature of the service provided to teenagers and young adults. Consideration is given to ensuring that there is appropriate geographical representation across the network region and from both TYA PTC and TYA designated hospitals. EXAMPLES OF MONITORING CRITERIA Documentation to be provided by LHBs through their Cancer Networks confirming the designation of the TYA PTC. 1.2 Documentation to be provided by the Cancer Networks confirming the designated TYA hospital/s and agreed levels of care to be provided. 1.3 Documentation to be provided by the Cancer Network. 1.4 Clinical Audit 1.5 The establishment agreement detailing the Cancer Network membership and management accountability. 7 These examples are indicative of the monitoring that will be required. A separate comprehensive online monitoring tool is being developed and will be made available to LHBs to allow uniform selfassessment. 8 The TYA PTC for young adults may also be collocated with the PTC for children and should be in the same city 12

13 1.6 Clinical governance and accountability rests with the LHB and with the consultant responsible for that patient, however where care is transferred from one clinical team to another and/or where the team provides care in more than one organisation there is documentation clearly detailing accountability. 1.7 The LHBs working through their Cancer Networks produce a Service Development Plan that is agreed by the Cancer Network Board and is updated annually. 1.6 Documentation to be provided detailing accountability for clinical governance. 1.7 a. The Service Development Plan, approved by the LHBs working through their Cancer Network Board, is available for external peer review. b. The LHBs will report through their network board on implementation of the service development plan. 13

14 OBJECTIVE 2: CARE PROVIDED BY TEAMS SHOULD BE WELL CO- ORDINATED TO PROVIDE AN EFFICIENT, EFFECTIVE SERVICE TO PATIENTS RATIONALE: Cancer care involves a number of different specialists working together as a team. To effectively work as a team, particularly across departments within an LHB, co-ordination and clinical leadership are required. To ensure this level of co-ordination, all cancer patients within the TYA age group will need to be identified to the TYA PTC MDT as soon as possible and, if possible, prior to the start of treatment. The LHB/Trust Cancer Lead Clinician (CLC) is accountable to his/her Board via the Medical Director or Executive Lead for Cancer and is responsible for identifying requirements to ensure cancer teams within the LHB/Trust comply with the cancer standards. The LHB/Trust CLC needs to be supported by the LHB/Trust senior management team involved in providing cancer services. The Cancer Network s TYA subgroup will advise the CLCs of the LHB/Trust where services are provided. LHBs working through the Cancer Network s TYA subgroup need to ensure that a process is in place so that prompt information on new patients with a diagnosis of cancer within this age-range is passed onto CLCs and the TYA PTC MDT and that care is managed 9 by the appropriate specialist cancer team. The team will depend on the cancer type and may be the PTC s children s cancer MDT, the TYA PTC MDT, a cancer site specific adult cancer MDT, or a supraregional specialist MDT 10. Teenagers and young adults should be offered the option to be cared for in the PTC with dedicated age appropriate facilities with the support of other patients of similar age. Effective communication between teams regarding services available at all sites is crucial. 9 Managed by does not necessarily equate to delivered by 10 For rarer cancers such as sarcomas, ocular tumours, or liver cancer. 14

15 STANDARD EXAMPLES OF MONITORING CRITERIA In each LHB 12 there is an identified Cancer Management Team that reflects the manner in which cancer is treated across the management structures. Each team includes at a minimum: a. Cancer Lead Clinician (CLC); b. a designated Lead Manager; c. the lead Cancer Co-ordinator; d. a nominated Executive Lead; e. a designated Lead Cancer Nurse. 2.2 The CLC is appointed by the LHB/Trust and has recognised dedicated sessional time with administrative and senior management support. 2.3 The CLC attends both LHB and Cancer Network meetings as appropriate. 2.4 The lead clinician for the TYA PTC 13 is confirmed by LHBs through their Cancer Network in consultation with their respective CLC and Medical Director or Executive Lead of the host LHB. 2.1 Documentation detailing names and designation and a description of how the management team relates to internal management structures. 2.2 Job plan to detail role, sessional time and management support for CLC. 2.3 Detailed in job plan. 2.4 Documentation to be provided by the Cancer Network 11 These examples are indicative of the monitoring that will be required.. A separate comprehensive online monitoring tool is being developed and will be made available to LHBs to allow uniform selfassessment. 12 And Velindre 13 This person would be considered to be the lead clinician for both the TYA PTC and for the Cancer Network s TYA subgroup. The TYA and children s PTCs may be either collocated or within the same city. 15

16 2.5 The TYA PTC lead clinician: a. has overall responsibility for the TYA PTC MDT including team working, the team meeting and clinical audit; b. ensures clinical audit is undertaken across the Cancer Network to evidence where coordination of care is achieved with optimal treatment provided in the appropriate age-related setting for each new patient; c. ensures that care is coordinated with joint decision making regarding clinical management of patients who present to clinical teams in designated TYA hospitals; d. ensures 24 hour telephone advice is available for clinicians from a named specialist from the TYA PTC; e. provides clinical advice and coordinate any modernisation projects that are associated with working of the TYA PTC MDT; f. has dedicated administrative and secretarial assistance to support the functioning of the TYA PTC MDT; g. attends both LHB/Trust and Cancer Network meetings as appropriate. 2.5 Responsibility detailed in job plan with evidence provided of: a. regular team meetings with attendance register and evidence of Clinical audit undertaken; b. TYA PTC lead clinician s responsibilities regarding monitoring shared care arrangements; c. service modernisation e.g. process mapping and capacity/demand studies; d. dedicated administrative and secretarial support; e. attendance at LHB/Trust and Network meetings. 16

17 2.6 Each TYA designated hospital has a lead clinician 14 supported by a Lead Nurse, The Lead Clinician has the following roles and responsibilities: a. responsibility for the quality of care provided by the hospital and appropriate care pathways are in place with the TYA PTC for the patient age groups 16 to 17 and 18 to 24 years; b. liaises with all site specific cancer MDT lead clinicians relevant to TYA cancers in the hospital; c. ensures participation in Cancer Network clinical audits to evidence whether treatment guidelines and protocols agreed by the Cancer Network are implemented to the TYA designated hospitals agreed level of care that can be provided; d. ensures that a process is in place so that if patients are referred from the TYA designated hospital to the TYA PTC MDT, the referring clinician will inform the patient/carers with parental responsibility 15 of the possibility of a diagnosis of cancer prior to transfer; e. ensures, where patients are treated at the TYA designated hospital, that a named key worker 16 and specialist clinician are responsible for coordinating the care of each teenager and young adult. They will ensure that the treatment protocol agreed by the relevant cancer site MDT 2.6 Requirements to be detailed in job plans. 14 The lead clinician should have a practice in the designated hospital in at least one of the cancers common to teenagers and young adults. 15 This applies to patients under the age of 18 years. 16 See Appendix 3 for role of key worker 17

18 and confirmed by the TYA PTC MDT is delivered; f. has dedicated administrative and secretarial assistance to support the role and attend Cancer Network meetings as appropriate; g. works with the Cancer Network to ensure registration in Canisc of all new TYA patients within a maximum of 2 weeks of diagnosis. h. Ensure access to TYA PTC outreach services for patients 2.7 All teenagers and young adults with cancer have a written care/treatment plan hour telephone clinical advice is available for clinicians from a named specialist from the TYA PTC. 2.9 Each LHB hosting a TYA PTC or a TYA designated hospital has a process by which their Cancer Management Teams report to their Boards at least annually on compliance with the National Standards for teenagers and young adults with cancer. These are made available to the Cancer Network An analysis of the reasons for non-compliance with standards is undertaken with action plans to achieve compliance agreed by the LHBs working through the Cancer Networks. 2.7 To be developed 2.8 To be developed 2.9 a. Outline of process for annual assessment. b. Minutes of Health Board/Trust Board meeting covering report on compliance to standards Health Boards/Trust to provide documentation of agreed action plans. 17 If the TYA PTC or designated hospital receives patients from more than one Cancer Network, board reports on compliance should be made available to each of these. 18

19 TOPIC: PATIENT-CENTERED CARE OBJECTIVE 3: TO ENSURE THAT PATIENTS AND OR THEIR CARERS HAVE SUPPORT AND ALL THE INFORMATION THEY REQUIRE REGARDING THE DIAGNOSIS, TREATMENT OPTIONS AND TREATMENT CARE PLAN. RATIONALE: Appropriate information, whether provided in written form or via face-to face communication, is required to support teenagers and young adults and their families/carers throughout the cancer journey. All healthcare professionals need to be sensitive to potential problems with communication, with information being tailored to the needs of individual patients. Teenagers and young adults need appropriate information to make informed choices about their treatment and how to access appropriate facilities. Special training can improve communication skills in general and will provide for effective communication of the diagnosis, treatment options and treatment care plan. It is the Welsh Government s policy that everyone diagnosed with cancer will have a nominated Key Worker to co-ordinate their care and provide support whilst they are undergoing treatment in hospital or the community, and subsequently after their treatment has finished. Appropriately skilled, professional key workers should be identified to support teenagers and young adults, and their families, by: coordinating their care across the whole system and at all stages of the patient pathway; providing information; assessing and meeting their needs for support. Details of the role of the Key Worker are set out in Appendix 3. The psychological needs of this patient group and their families are often not addressed. People cope with distressing circumstances in a number of ways, however for those facing the diagnosis of initial or recurrent cancer a number will experience significant levels of anxiety and depression and may benefit from specific psychological or psychiatric therapy. The input of psychological support cannot be underestimated. With increasing survival, the physical, emotional and social sequelae, which may impair the quality of life in the long term, become more important. Although many of those cured of cancer during childhood or young adulthood will return to good health, others will experience significant late sequelae. 19

20 These sequelae can occur at any time during or following completion of therapy and may include: Impairment of endocrine function (including infertility, abnormal growth and development or bone mineral accretion); Cardiac and neurological impairment; Cognitive decline e.g. following treatment for CNS tumours Psychological effects and increased risk of developing a second cancer. On average, 4% of childhood cancer survivors develop a second primary malignancy within 25 years of diagnosis although for certain diagnoses this figure is higher. Radiotherapy is a particular risk factor. The risk of second malignancy, which can occur many years after the primary diagnosis, is estimated to be between four and six times the risk in the general population. 20

21 STANDARD EXAMPLES OF MONITORING CRITERIA The TYA PTC MDT agrees a communication policy regarding: a. communication of agreed essential information between the TYA PTC and TYA designated hospitals; b. communication between members of the team; c. communication between the team members and the patient and their families/carers including issues of fertility for all patients where treatment involves more than simple surgery, and outlining the benefits of peer support and age-appropriate facilities at the TYA PTC; d. training of team members with direct patient contact specifically relating to communication with young adults and in relation to breaking bad news; e. allowing patients adequate time to consider treatment options. 3.2 The TYA PTC MDT and each TYA designated hospital nominates a person with sufficient cover to be responsible for ensuring written information is offered to all new patients. 3.3 Written information in a language and format appropriate to the patient is offered to each new cancer patient and their family. This includes: a. general background information about the specific cancer; b. detail of treatment options, specific local arrangements 3.1 Detail of MDT s communication policies to include: a. detail of agreed essential information that is to be communicated between MDTs; b. evidence of communication skills assessment/training; c. evidence that the MDTs have considered the views of its patients or carers regarding the appropriateness of communication; d. evidence that MDTs have discussed fertility issues with all patients, and if not, the reasons why this has not been undertaken. 3.2 Name of responsible person and detail of provision of written information within the communication policy. 3.3 Copies of documentation provided to patients/carers. 18 These examples are indicative of the monitoring that will be required. A separate comprehensive online monitoring tool is being developed and will be made available to LHBs to allow uniform selfassessment. 21

22 including information about the MDT and support services and whom the patient should contact if necessary; c. details of local selfhelp/support groups and other appropriate organisations; d. information about long-term follow up and possible sequelae; e. details of clinical trials, f. benefits of age-appropriate place of care (e.g. TYA PTC). 3.4 The responsible MDT 19 ensures all communication with each patient and their family is tailored to their needs, including in relation to language, culture and physical or learning disabilities. 3.5 There is access to a private room or area where patients and or their carers can discuss the diagnosis in conditions of adequate privacy with the appropriate member of MDT 3.6 The responsible MDT 20 for each stage of patient care ensures that patients are screened for ongoing support needs including assessment of educational, employment, emotional and psychological support. 3.7 The patient s care plan is appropriately updated as the person moves beyond the active treatment phase. This should include an end of treatment summary, complications experienced and existing or anticipated late effects for long term 3.4 Detail audit of MDT communication policy. 3.5 Details should be provided of facilities available. 3.6 MDT operating policy to include assessment for psychosocial support at: a. diagnosis b. during treatment c. end of definitive treatment d. during long-term follow-up e. relapse f. during palliative care g. bereavement 3.7 To be determined The relevant MDT could be either a cancer site MDT (adults) within a TYA designated hospital or a TYA PTC MDT providing care in a Teenage Cancer Unit. 20 This could be the cancer site MDT or the TYA PTC MDT and is likely to be the site specific cancer MDT after the initial agreement regarding the treatment plan. 21 Care Plans are a Welsh Government commitment and work is ongoing regarding their implementation. 22

23 survivors. These should be made available to the patient and healthcare professionals. 3.8 A benefits/welfare rights specialist provides the opportunity for teenagers and young adults and their families to receive benefit advice from the point of diagnosis of cancer onwards. 3.9 Patients and their families found to have significant levels of anxiety and or depression are offered prompt access to specialist psychological support or psychiatric care capable of providing level 3 and level 4 psychological interventions as defined in the NICE Supportive and Palliative Care Guidance 3.10 The Cancer Networks facilitate a Network-wide approach to psychological/psychosocial support services as recommended in the NICE Supportive and Palliative Care Guidance, irrespective of the place of care Mechanisms are in place to support teenagers and young adults in improving their compliance with treatment regimes. 3.8 Cancer Networks to detail access to benefits/welfare rights specialist. 3.9 Cancer Networks to detail access arrangements Cancer Networks to detail access To be determined 22 Many services are community based/provided by the third sector and travel to the patient. 23

24 TOPIC: MULTIDISCIPLINARY TEAM OBJECTIVE 4: TO ENSURE THAT CANCER CARE FOR YOUNG PEOPLE IS PROVIDED BY A SPECIALIST MULTIDISCIPLINARY TEAM RATIONALE: Patient care needs to be provided by an appropriate team of specialists to ensure provision of high quality care, taking account of a range of expertise within different specialities. The TYA PTC will co-ordinate intensive treatment, psychosocial support and peer support for young people with cancer. Each TYA PTC will host a TYA PTC MDT and will include clinicians with expertise in cancers most frequently occurring in this age group namely lymphoma, leukaemia, testicular, sarcoma and brain tumours. Initial referral may be to an adult cancer site specific MDT that may or may not be co-located with the TYA PTC. Systems must be in place to register all new patients with the TYA PTC MDT regardless of where management occurs. An appropriate treatment plan should be developed including the place of care recognising that a number of young adults may opt to have all their cancer treatment in adult services. In these circumstances the local site specific MDT will deliver the treatment plan that has been jointly agreed or confirmed with the TYA PTC MDT. The MDT meeting where the recommended treatment plan is agreed could occur as part of the regular site-specific MDT meeting or at the TYA PTC MDT meeting, but ideally should include representation from members of the TYA PTC MDT and the relevant site specific MDT 23. If this is not possible, consultation between teams should occur as soon as possible afterwards. Discussion with the TYA PTC MDT to confirm the treatment plan should not delay start of treatment. The clinical team will vary as the patient moves through the care pathway from diagnosis and treatment to follow up and this is reflected in the following standards. Standards setting out the requirements for communication between clinical teams are covered under Objective 2. Team working will support cover for annual leave, sick leave and holidays and will enable the MDT to function at all times. Team membership will need to be reviewed to ensure appropriate input into the management of patients and to reflect new roles such as advanced practitioners as they become established. The TYA PTC MDT should review and address workforce development and members training needs as per NICE and other national guidance. 23 The use of teleconference/medicine will facilitate this 24

25 A programme of audit, defining performance against the cancer standards will provide the LHBs/Trusts, Cancer Networks, TYA PTC MDT, TYA designated hospitals, WHSSC, the public, and the Welsh Government with the information needed to maintain and improve cancer services. Identifying and rewarding areas of strength are important for morale and motivation. By developing an effective audit programme, the Cancer Network can also determine whether any weaknesses are due to organisational factors or to resource issues, a distinction that is of the utmost importance in seeking the appropriate remedy. Standards for imaging, pathology and treatment modalities are detailed in the cancer-site specific National Cancer Standards (2005) for services to adult patients 2. 25

26 STANDARD EXAMPLES OF MONITORING CRITERIA All clinicians treating teenagers and young adults with cancer are part of either the TYA PTC MDT or core members of a cancer site MDT at a designated TYA hospital or the organisation hosting the TYA PTC. This ensures that diagnosis, treatment and patient management decisions are taken by the appropriate MDT. 4.1 Evidence to be provided as part of annual audit by the LHBs. 4.2 The core membership of the TYA PTC MDT has a designated lead clinician 25 and includes the following specialists 26 : a. Consultant oncologists 27 with a special interest in: leukaemia lymphoma testicular cancer brain and CNS cancers soft tissue sarcoma paediatric oncology b. TYA lead nurse c. Psychologist 28 d. Research Nurse e. TYA social worker f. MDT Co-ordinator 4.3 The TYA MDT Lead Clinician to: a. detail names and designated time of MDT members including documentation confirming sessional commitment by clinicians and cancer specific postregistration qualifications of team members; b. confirm that all oncologists are core members of adult site specific MDTs participate in annual cancer standards; compliance self assessment c. detail arrangements for coordination and secretarial support; d. arrangements for cover when core MDT members are absent; e. documentation of referral pathways between the local TYA designated cancer site MDT and the TYA PTC MDT. 4.3 The TYA PTC MDT has access to 4.3 Details of access. 24 These examples are indicative of the monitoring that will be required.. A separate comprehensive online monitoring tool is being developed and will be made available to LHBs to allow uniform selfassessment. 25 The designated lead clinician will be one of the TYA PTC MDT Core members 26 With appropriate and adequate cover for the service to run at all times 27 The oncologist will depend on the cancer site and includes haemato oncologists. Each must have a practice in the relevant cancer which includes managing patients in the TYA age range. Each must also be a core member of the equivalent MDT managing adult patients that must be compliant with the Welsh National Cancer Standards/NICE service guidance. 28 To provide psychological support at a minimum of level 3 as per NICE guidance. 26

27 the following specialists 29 an extended team: as part of Consultant level input from the relevant site-specific MDTs; CNSs from adult cancer MDTs as appropriate to each patient; Oncology outreach nurses; Palliative Care team; Dieticians; Physiotherapists; Occupational therapists; Research data manager; Cancer geneticists; Therapy radiographers. 4.4 The TYA PTC MDT has immediate on site access to the following: Intensive Care; Neurosurgical services; Tertiary services including cardiology, renal, endocrinology, nuclear medicine); Dental services; Pain management team; 4.4 Details of access. Palliative care team. 4.5 Each patient has a key worker To be determined The joint TYA PTC MDT/ 4.6 Audit of Care Plans. designated TYA hospital cancer site MDT care plan covers ongoing surveillance for late effects and psychological support and is drawn up with input from: Lead clinician (oncologist with expertise in late effects); Key worker; Specialist nurse; Endocrinologist; 29 This only applies to patients treated by the TYA PTC MDT at the PTC. 30 This applies to patients wherever they are managed, The initial named key worker should be allocated at the MDT meeting where the initial diagnosis occurs, if not before. 31 Current work is underway to monitor implementation of key workers for all cancer patients 27

28 Appropriate allied health professional; Psychological services clinician; 4.7 The TYA PTC MDT meeting is held every week to discuss cases, and agree and record individual treatment plans. This includes confirmation of plans submitted by designated TYA hospital cancer site MDTs. Each TYA PTC MDT core member or their deputy attends all meetings as required by the TYA PTC MDT lead clinician 32. The MDT follows an agreed policy for review of the management of all patients currently undergoing treatment or supportive care regardless of the setting. 4.8 The lead clinician in the TYA PTC MDT and in each designated TYA hospital ensures that all relevant sections of the all Wales Cancer Data Set are completed for each new patient diagnosed with a malignancy. 4.9 The TYA PTC MDT and cancer site MDTs in designated TYA hospitals participates in UKwide/national clinical audit as specified by the Cancer NSAG 4.10 LHBs/Trusts ensure that the expected registration of incidence using the Patient Episode Database for Wales data is submitted to the Welsh Cancer Intelligence and Surveillance Unit (WCISU) within 3 months of calendar year end. 4.7 The TYA MDT Lead Clinician to a. Detail meetings held and % attendance of team members; b. Audit of MDT discussion of management plan in patient notes. 4.8 Detail: a. Number of new malignant cancer cases referred to the team per year and recorded on the all Wales Cancer data Set. b. % completion of all Wales Core Cancer Data Set. c. % completion of all Wales Extended Cancer Data Set. 4.9 Clinical Network annual report to detail Network-wide audit programmes and resulting action plans WCISU to monitor registrations received against expected registrations (based on an average of the last 3 years registration per Organisation). 32 Attendance of core group oncologists at the MDT meeting will depend on the patient treatment plans to be discussed and agreed. 28

29 TOPIC: INITIAL REFERRAL AND TIMES TO TREATMENT OBJECTIVE 5: TEENAGERS AND YOUNG ADULTS WITH CANCER SHOULD BE REFERRED, DIAGNOSED AND TREATED IN A TIMELY AND APPROPRIATE FASHION RATIONALE: The majority of teenagers and young adults with acute or rapidly progressing disease will require prompt diagnosis and treatment. The cancer waiting times targets included in this Topic are designed to achieve this. Shorter waiting times are required for specific cancers where clinically indicated. For certain types of cancer the definitive treatment policy is initial surveillance with specific anti-cancer therapy deferred until such time as it is clinically indicated. Teenagers and young adults may develop a clinical problem while out of hospital at any time e.g. neutropenic fever/haemorrhage. It is therefore essential that teenagers and young adults and their families/carers have immediate access for advice or treatment as required by guidance on Systemic Anti-Cancer Therapy 33. The recommendations of this report are being implemented across Wales. Standards for imaging, pathology and treatment modalities are detailed in the cancer-site specific National Cancer Standards (2005) for services to adult patients 2 33 Systemic Anti Cancer Therapy: For better, for worse? National Confidential Enquiry into Patient Outcomes and Deaths,

30 STANDARD EXAMPLES OF MONITORING CRITERIA LHBs working through the Cancer Network agree referral guidelines for use by the TYA PTC MDT and designated TYA cancer site MDTs that are in accordance with NICE referral guidelines for suspected cancer. 5.2 Written referral pathways are drawn up by LHBs working through the Cancer Network which detail the patient journey from whichever point patients access the system across the network. These pathways include investigation of suspicious lumps and inconclusive scans that may indicate a cancer diagnosis. 5.1 a. Confirmation from the Cancer Network that all local GPs in the area have a copy of referral guidelines. b. Audit of referrals to confirm that guidelines are being followed. 5.2 Confirmation that the Cancer Network has a copy of the agreed pathways. 5.3 LHBs and Trusts, working through the Cancer Network, ensure that referral pathways are adhered to particularly where pathways cross Health Board/Trust or Network boundaries. 5.3 Networks to provide evidence of review of agreed referral pathways. 5.4 Teenagers and young adults presenting to their GP with symptoms with the criteria for suspected cancer are referred as urgent suspected cancer to the TYA PTC MDT or designated TYA hospital. 5.4 Audit of referral process. 5.5 For patients aged 16 to 17 years referred initially to a TYA designated hospital, a process is in place to ensure rapid communication between the lead clinician at the hospital and the TYA PTC Lead Clinician regarding management of the patient once a cancer is suspected or diagnosed. 5.5 Communication policy to detail these requirements. 34 These examples are indicative of the monitoring that will be required. A separate comprehensive online monitoring tool is being developed and will be made available to LHBs to allow uniform selfassessment. 30

31 5.6 Confirmation of the diagnosis of malignancy reaches the GP by the end of the next working day after the patient/ family has been informed. 5.7 Patients referred as urgent suspected cancer by the GP and confirmed as urgent by a member of the TYA PTC MDT or cancer site MDT, if diagnosed with a malignancy, start definitive treatment within 2 months of referral at the hospital. 5.6 Audit of proportion of patients diagnosed with cancer where information was sent to the GP within the required timescale Waiting times from receipt of urgent suspected cancer referrals to start of definitive treatment. 5.8 When diagnosed with a cancer, patients not already included as an urgent suspected cancer referral start definitive treatment within 1 month from diagnosis regardless of referral route. 5.8 Waiting times from diagnosis to start of definitive treatment. 5.9 Following discussion of the diagnosis and an initial treatment plan the cancer site MDT lead clinician in a TYA designated hospital confirms the treatment protocol with the TYA PTC MDT lead clinician or core oncologist with the relevant expertise. This must not delay the start of treatment. 5.9 Joint audit between the TYA PTC MDT and referring designated TYA hospitals Teenagers and young adults diagnosed with acute leukaemia, if considered suitable for treatment, start definitive treatment as soon as possible and always within one month of receipt of the referral at the hospital Audit of waiting times for this patient group Intensive chemotherapy for acute leukaemia and lymphomas without stem cell transplantation is only undertaken in TYA designated hospitals meeting the requirements of the BCSH Detail the number of patients receiving intensive chemotherapy for acute leukaemia and lymphomas without stem cell transplantation for the BCSH cancers identified. 35 The site specific MDTs are responsible for informing the GP of the diagnosis. 31

32 5.12 A referral pathway for neurorehabilitation services is in place for teenagers and young adults with CNS malignancies Confirm that referral pathway in place Patients undergoing radiotherapy are treated within the maximum waiting times as recommended by the Joint Collegiate Council for Oncology 5.13 Waiting times from receipt of the request form by the radiotherapy department, or verbal request, to the date of the first radiotherapy fraction. 36 National Standards for Brain and CNS Tumours is in preparation 32

33 OBJECTIVE 6: TEENAGERS AND YOUNG ADULTS WITH CANCER SHOULD BE DIAGNOSED, STAGED AND TREATED PROMPTLY AND IN- LINE WITH BEST PRACTICE GUIDELINES RATIONALE: It is important that patients are given access to clinical trials. It is also essential that clinicians consider the biology of each patient s particular cancer. Where there is evidence for patient benefit, patients aged years should be offered access to paediatric protocols as advised by the TYA PTC MDT. It is unlikely that many paediatric trials will be open outside of a TYA PTC and the consequences of choosing not to be treated in a PTC in terms of access to trials should be clearly explained to young people, in particular those aged 18 and over as part of their decision making process. Standardisation of referral pathways and clinical protocols for supportive care across the Cancer Network will enable outcome assessment to be performed in a uniform manner, and staff gain greater expertise by concentrating on a lesser number of well-defined protocols. Standards for imaging, pathology and treatment modalities are detailed in the cancer-site specific National Cancer Standards (2005) for services to adult patients 2 33

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