B
Paper COO 7
For Discussion
SCHEDULE 2 – THE SERVICES
A. Service Specifications
|Service Specification No. |E01/HSS/S(number tbc) |
|Service |High Energy Proton Beam Therapy |
|Commissioner Lead | |
|Provider Lead | |
|Period |12 months |
|Date of Review | |
| |
|1. Population Needs |
| |
|1.1 Introduction |
|1.1.1 Radiotherapy is the use of ionising radiation to kill cancer cells with the aim of cure or effective palliation (easing symptoms without |
|curing the underlying disease). Radiotherapy is used the majority curative modality in the treatment of over 40% of all patients who are cured |
|of their cancer. |
| |
|1.1.2 Improving Outcomes: A Strategy for Cancer (2011) states that: |
|“Improved outcomes can also be delivered by ensuring that patients have access to high quality modern radiotherapy techniques, comparable to |
|those used in other European countries, to improve cure rates and improve patients’ experience by minimising any long-term side effects of |
|treatment”. |
| |
|1.1.3 This specification focuses on one form of radiotherapy for malignant disease, high energy proton beam therapy. |
| |
|1.2 What is Proton Beam Therapy? |
|1.2.1 Proton Beam Therapy (PBT) is the safe use of controlled doses of proton ionising ionising radiation to treat people who have cancer with |
|the aim of delivering as high a dose of radiation as possible to the cancer whilst sparing the surrounding normal tissues. It differs from |
|external beam radiotherapy (EBRT) in that the radiation is, is delivered by a beam of proton particles rather than using X-rays. Due to the |
|physical properties of protons, they deposit almost no dose beyond the tumour due to a property of protons known as the ‘Bragg Peak’. This is in|
|contrast to X-rays where there is dose extension beyond the tumour, reducing as the beam diverges and attenuates. |
|1.2.2 PBT can be used alone or as part of a multi-modality treatment regime with surgery and /or chemotherapy. PBT is complex and requires an |
|understanding of the principles of medical physics, radiobiology, radiation safety, dosimetry, radiation treatment planning, simulation and |
|interaction of radiation with other treatment modalities. |
|1.2.3 PBT is a treatment that is given with the aim of cure. Its use can reduce some acute toxicity and more significantly can reduce the |
|severity or avoid the long term permanent side effects of treatment and improve the chances of maintaining quality of life. PBT can also be used|
|as part of a dose escalation strategy to increase tumour control, by sparing critical structures. It is typically delivered to patients every |
|weekday, over a number of weeks, depending on the tumour site. Most patients are treated on an outpatient basis. |
| |
|2. Outcomes |
| |
|2.1 NHS Outcomes Framework Domains & Indicators |
| |
|Domain 1 |
| |
|Preventing people from dying prematurely |
|x |
| |
|Domain 2 |
|Enhancing quality of life for people with long-term conditions |
|x |
| |
|Domain 3 |
|Helping people to recover from episodes of ill-health or following injury |
| |
| |
|Domain 4 |
|Ensuring people have a positive experience of care |
|x |
| |
|Domain 5 |
|Treating and caring for people in safe environment and protecting them from avoidable harm |
|x |
| |
| |
|2.2 Oversight/Outcomes |
| |
|2.2.1 Providers of proton beam therapy services are required to deliver: |
|a prospective collection of site specific outcome data including patient reported quality of life outcomes; |
|a collection of data to contribute to the National Radiotherapy Dataset (RTDS); |
|follow up and data collection that can be devolved locally for the patient, to minimise travel and inconvenience, e.g. neuro-cognitive |
|assessments; |
|regular participation in the National Cancer Peer Review Programme or its equivalent, with involvement in audit, and any recommendations |
|actioned; |
|regular reviews to ensure that protocols remain up to date, and that staffing levels and skills mix are appropriate for the numbers of patients |
|treated and complexity of treatments delivered; |
|information to commissioners of any clinically significant errors reported. It is required that the radiotherapy pathway coding system set out |
|in ‘Towards Safer Radiotherapy’ or any subsequent radiotherapy safety guidance document is used to aid the sharing of information and learning |
|between centres through the NRLS; and |
|national oversight of the quality of the PBT service as a whole. |
|An externally accredited QA system similar to that of other radiotherapy services. |
| |
|The Proton Beam Treatment Centre (PBTC) must ensure that the services they deliver ensure compliance with all relevant standards related to the |
|treatment of patients who require proton beam therapy. They will be required to demonstrate compliance with the following: |
|adherence to applicable national standards (applicable to those age groups treated by the PBT delivering centre); |
|achieving cancer waiting times for first treatment; |
|providing access to all clinical trials that are appropriate to their tumour type; |
|parents and children have integrated and co-ordinated care across the whole pathway and are supported during their cancer journey; |
|one year and five year survival outcomes are in line with national and international standards for children with cancer adjusted for case mix; |
|local control rates to be comparable with those in the current literature; |
|results of patient satisfaction surveys an patent experience surveys; and |
|results of referrer satisfaction surveys. |
| |
|3. Scope |
| |
|3.1 Aims and objectives of service |
| |
|3.1 Aim |
|The aim of the service is to provide high energy proton beam therapy services for adult, teenage and young adult (age 16 – 24 years), and |
|paediatric patients (age < 16 years), to improve cancer outcomes, reduce morbidity arising from treatment and support the patient and family |
|throughout their cancer journey and beyond. The nature of the service to be delivered is explained more fully in section 3.2. |
| |
|3.2 Objectives |
| |
|3.2.1 The objectives of the national PBT service are that the designated Principal Treatment Centres (PBTCs), the commissioned providers of PBT,|
|will work collaboratively with each other and the referring centres to: |
|ensure that all eligible patients receive treatment in line with this service specification and associated published clinical commissioning |
|policies and to nationally agreed standards; |
|ensure that the service equipment and associated facilities allow for the continuing development of technologies to obtain the best clinical |
|outcomes; |
|ensure a sufficient workforce, appropriately skilled, is planned and recruited to provide services in line with this specification and relevant |
|commissioning policies; |
|define and collect data for building an evidence base in advance of 2018; |
|apply a rigorous prospective process for governance including auditing outcomes, working in partnership with NHS England Highly Specialised |
|Commissioning; |
|facilitate clinical and other research. |
| |
|3.2.2 The PBT service must be delivered in accordance with the service and quality standards set out in the NHS England Radiotherapy service |
|specification as well as the service specific standards set out in this specification. |
| |
|3.2.3 In addition to the standards required within the NHS Standard Contract, specific quality standards and measures will be expected. The |
|provider must: |
|meet technical standards in accordance with the equipment specification and equipment supplier’s service delivery model; |
|provide assurance that services in England match international standards for Radiotherapy, consistent with the Cancer Reform Strategy Commitment|
|to develop World Class services and the NHS England Vision for Radiotherapy Services (2014); |
|lead on the engagement of multi-disciplinary Diagnostic and Treatment teams; |
|make provision for psychosocial Multi-disciplinary teams; |
|provide treatment to patients in accordance with the nationally agreed (NCRI, CCL, CSG and NHRC) clinical trial protocols within the UKCRN Study|
|Portfolio and guidelines (CCLG) where these exist; |
|support the national development and specification of appropriate referral pathways; |
|adhere to and facilitate tumour specific referral pathways; |
|use effective pathways between a referring treatment centre multi-disciplinary team and a Principal Treatment Centre (PTC) multi- disciplinary |
|team; |
|provide assurance that radiotherapy is delivered according to national standards; |
|meet delivery of waiting times for First Treatment: Radiotherapy: 62 day from urgent referral to treatment and 31-Day Wait from decision to |
|treat to treatment for all cancers and second or subsequent treatment; |
|meet the national standards of the Royal College of Radiologists (RCR), Society and College of Radiographers (SCoR) and Institute of Physics and|
|Engineering in Medicine (IPEM) which should be regularly monitored by each department and shortcomings addressed |
| |
|ensure treatment of patients in accordance with agreed protocols; |
|ensure protection of children and other vulnerable people in line with “Safeguarding Vulnerable People in the Reformed NHS: Accountability and|
|Assurance Framework”; |
|deliver age appropriate care in age appropriate settings; |
|provide support of families and carers of PBT patients; |
|provide patients with information appropriate to their needs and treatment pathway; |
|ensure adequate training of staff to deliver the PBT service, including provision of training and mentorship into referring centres; |
|support entry of patients to evaluative commissioning programmes |
| |
|3.2 Service description/care pathway |
| |
|3.2.1 These services are commissioned to treat patients in accordance with published clinical commissioning policies, against an agreed pathway.|
|These will be from NHS England and may be subject to separate commissioning policies from the Devolved Administrations (DAs), in accordance with|
|the Memorandum of Understanding that is in place with each DA. The service may also receive referrals on behalf of patients from other countries|
|as well as self /privately funded patients. |
| |
|3.2.2 Services must provide visible and credible clinical leadership and be directly linked with other local specialist cancer and paediatric |
|services, as necessary, to develop an effective national integrated PBT network. This will necessarily include some organisation or direct |
|local formal networking arrangements in: paediatric oncology, neurosurgical, sarcoma and Teenage and Young Adult services. These are described|
|more fully at 3.3. |
| |
|3.2.3 Through the creation of a single integrated clinical network, all potential cases for PBT falling within NHS England’s commissioning |
|responsibilities will have a common referral process, assessment and care pathway. This will ensure equal access to the same treatment |
|protocols and equal access to optimum sub-specialisation of treatment. |
| |
|3.2.4 Unplanned coincident and planned concurrent treatments will be outside of the scope of this specification and be delivered through |
|applicable tariff arrangements. Adequate capacity and formal links for specialist delivery are expected to be available locally to match the |
|case mix and change patterns of oncological care. |
| |
|3.2.5 The service will not be expected to deliver low energy eye treatments, which will continue to be delivered under separate NHS England |
|contractual arrangements and be separately specified |
| |
|3.3 Referral Processes |
| |
|3.3.1 The PBT service forms part of the pathway of cancer care for patients, developed with formal links to referring Multi-Disciplinary Teams |
|(MDTs). The pathways must be reviewed formally on a regular basis. User and carer involvement is an important step in this process. Referrals |
|should adhere to an agreed referral protocol that includes and requires that: |
| |
|referrals are received and managed through an administrative hub run by the provider (in collaboration with other providers where necessary); |
|treatment of patients on the PBT pathway must be discussed at an appropriate specialist referring (MDT) (which must involve a Clinical |
|Oncologist) – to one of the two dedicated PBT supra-specialist MDTs in England; |
|referrals for PBT must be made by a Consultant Clinical Oncologist (who is a member of the relevant specialist MDT) to the appropriate MDT |
|site-specialist Consultant Clinical Oncologist at the PBT centre. This will be via a web based referral system; |
|a set of national criteria (clinical commissioning policies) are developed by the commissioner to define the types of patients eligible for this|
|treatment to ensure all eligible patients have access to this form of treatment; and |
|at entry to the care pathway, the provider must have systems and processes in place to: |
|register patients; |
|collect relevant clinical, imaging and administrative data from the referring centre; |
|manage the appointment process (reappointment and do not attend (DNA) process, if appropriate); |
|provide an appropriate range of information to patients which supports informed consent; and |
|undertake initial assessment in the appropriate location. |
| |
|3.3.2 There must be adequate dedicated clinical and support staff to triage and manage referrals to ensure: |
|fast decision making and links to referring clinical teams; |
|prompt communication with referring clinical teams; |
|interaction with referring teams to ensure that radiotherapy can be commenced at the optimum point in the treatment pathway; |
|patterns of shared care with local referring clinical teams are compatible with quality, efficiency and governance of the proton radiotherapy |
|delivery; |
|good communication with referring teams to ensure good transfer of summary data on radiotherapy, chemotherapy, social and supportive needs and |
|any coincident medical events after treatment; and |
|support and development of innovative models of MDT working across different site specialist and patient pathways to facilitate inward referral.|
| |
|3.3.3 On receipt of the referral and clinical, imaging and administrative information, the PBTC will plan the patient’s treatment. The PBTC |
|will develop a Personalised Care Plan for each patient in conjunction with the patient/family and their referring clinician. The PBTC will |
|ensure that all supporting services are aware of the Personalised Care Plan and their respective roles in ensuring its delivery. |
| |
|3.3.4 If appropriate, the PBTC will provide support in making arrangements for the patient’s (and family/carer’s) accommodation, taking account |
|of any social care and special needs. |
| |
|3.3.5 The PBTC will make reasonable arrangements to assist the patient to arrive on time for their treatment through the provision of email and |
|phone / text alerts. |
| |
|3.4 Patient Access/Experience |
|3.4.1 The process around patient access and experience necessitates that the following requirements must be met: |
| |
|equality of access for patients for agreed clinical indications who require this treatment regardless of gender, age, ethnicity, disability, |
|religion or belief, sexual orientation, post code or any other non-medical characteristics; |
|clear and timely communications with patients, with a named key worker responsible for navigation through the patient pathway; |
|all patients with cancer eligible for PBT as part of their treatment receive PBT in a timely manner as part of their treatment pathway. If PBT |
|is the first definitive therapy then this should be delivered in accordance with any specified mandatory cancer waiting times; |
|PBT capacity is used to improve cure rates and improve patients’ experience by minimising any long-term side effects of treatment; |
|when a clinically significant incident occurs, it is essential that the patient is informed and offered appropriate support; |
|all serious incidents should be reported to National Reporting and Learning System (NRLS). Reportable incidents under IR(ME)R must be reported |
|to the CQC. |
| |
|3.5 Patient Support |
|3.5.1 Due to the nature of the treatment pathway, it is possible that patients and families may be away from home for significant periods, often|
|up to 8 weeks. This has the potential to be socially challenging for the individual and their family and may be a disincentive to accept Proton |
|Beam Therapy as a treatment option. The extant NHS England policy on travel and accommodation will apply. Where patients need additional |
|support to access the services, the PBTC must identify and signpost state, charitable and/or local support options for travel and accommodation |
|to maximise the opportunity that a patient’s treatment can proceed. These will include: |
|good patient information; |
|use of video links early in the referral process; |
|access to adequate low cost accommodation/housing; |
|dedicated social worker and psycho-social support staff; |
|encouragement of community feeling and mutual support; |
|educational support and facilities; |
|activities to prevent boredom; and |
|flexible transport models. |
| |
|3.6 Proton Beam Therapy Delivery |
|3.6.1 At the point of intervention, the PBTC must have systems and processes in place to ensure that: |
|the intervention is conducted safely and in accordance with accepted quality standards and good clinical practice; |
|the patient receives appropriate care during the intervention(s), including on treatment review and support, in accordance with best clinical |
|practice in an age-appropriate setting, and where appropriate, at the local referring trust, which will have a need for timely access to advice |
|and support. |
|where clinical emergencies or complications do occur they are managed in accordance with best clinical practice in an age appropriate setting; |
|the intervention is carried out in a facility which provides a safe environment of care and minimises risk to patients, staff and visitors; |
|the intervention is undertaken by staff with the necessary qualifications, skills, age appropriate experience and competence; and |
|there are arrangements for the management of out of hours care according to best clinical practice. |
| |
|3.6.2 The full range of dedicated professional support infrastructure must be available on site to deliver care at the highest quality, |
|efficiency and safety. Whilst not exhaustive, a minimum list of roles is shown at para 3.2.3. |
| |
|3.6.3 There must be access to modern PBT techniques such as spot scanning, Intensity Modulated Proton Therapy (IMPT) and Image-Guided |
|Radiotherapy (IGRT). |
| |
|3.6.4 Accurate treatment must be delivered in the context of a safety-conscious culture (i.e. quality systems to define/control process and |
|image guidance). The delivery of accurate treatment is the responsibility of all staff and each department must have in place safety-conscious |
|and governance procedures. |
| |
|3.6.5 PBTCs must have on-treatment verification imaging protocols (IGRT) in place as part of the overall quality system. |
| |
|3.6.6 PBTCs must have a system for reporting and analysing errors and lessons learnt should be fed back to the staff in multi-disciplinary |
|meetings and training programmes, including cascade to referring centres where appropriate. |
| |
|3.6.7 A robust contingency plan must be in place for the management of equipment failure to ensure continuation of radiotherapy treatment within|
|national guidelines for the prolongation of overall treatment times. This must include pathway management and prioritisation of national |
|referrals working with the partner proton service in the event of longer-term failures. |
| |
|3.6.8 It is imperative that the PBT service is compliant with the Ionising Radiation (Medical Exposure) Regulations (IR(ME)R) 2000. These |
|regulations (which now also include the Ionising Radiation (Medical Exposure)(Amendment) Regulations 2006) are legislation intended to protect |
|the patient from the hazards associated with ionising radiation. Major errors within radiotherapy are reported under IR(ME)R and investigations|
|are conducted under criminal law and under the threat of caution. IR(ME)R is flexible and allows for a wide variety of practices to be |
|undertaken as long as they are clearly justified. It is imperative that roles and responsibilities are clearly set out in procedures and that |
|everyone understands their individual roles. Responsibility for compliance with IR(ME)R rests with the employer and all entitled duty holders |
|as defined in the regulations. The employer should be considered to be the chief executive unless an alternative individual has been formally |
|designated as the employer. Under IR(ME)R, the employer is legally responsible, when establishing practices for the safe delivery of |
|radiotherapy, for ensuring that robust procedures exist, including training to meet the requirements of IR(Me)R, as well as those listed in |
|Schedule 1,(Regulation (4(1)). It is usual for the detailed implementation of IR(ME)R to be delegated to an appropriate professional. |
|Providers need to demonstrate compliance with IR(ME)R and show clear lines of authority from the professional leads to the employer as the |
|employer’s responsibility cannot be delegated under IR(ME)R. |
| |
|3.6.9 Maintenance must be undertaken in accordance with the manufacturer’s maintenance regime. |
| |
|3.7 Service Support |
|3.7.1 There must be clinical oversight of the service provided, and clinical accountability for governance purposes. There must be a |
|professional head of the radiotherapy service directly responsible for the development, management and accountability and responsibility for the|
|delivery of the service. This professional head of service must hold an appropriate qualification to practice and be registered with the Health |
|and Care Professions Council (HCPC). |
| |
|3.7.2 All work processes must be protocol led and clearly defined both within the provider organisation and with any other sub contracted |
|service provider. Any deviation from these protocols must be clearly documented and investigated with regular reviews, and where appropriate |
|updated. |
| |
|3.7.3 There must be adequate dedicated imaging capacity and siting to support CT simulation, CT/PET and MRI fusion techniques (or appropriate |
|clinical alternatives) for planning as well as treatment verification and adaptive therapy. There must be sufficient capacity for rescanning |
|(re-planning) PBT patients. |
| |
|3.7.4 Upon exiting the patient pathway, the provider must have systems and processes in place (that are agreed with all parties and networks) |
|to: |
|provide patients with access to telephone advice during and after treatment; |
|make urgent onward referrals where life-threatening conditions or serious unexpected event occur during an intervention/assessment; |
|ensure that patients receive discharge information relevant to their intervention including arrangements for contacting the provider and follow |
|up if required; |
|provide timely discharge information to the referrer and GP regarding the intervention, complications and proposed follow up; |
|ensure that the patient receives required drugs/dressings/aid; |
|ensure that support is in place with other care agencies including the voluntary sector; and |
|provide GPs and patients with treatment summaries, care plan and relevant follow up information at the end of treatment. |
|Instructions on ‘who to call’ in the event of reasonably predictable toxicity or complications must be provided. |
|Local shared-care for follow-up must be set up in advance to minimise unnecessary travel. |
| |
|3.8 Discontinuation of Intervention |
| |
|3.8.1 The Provider is within its right to withhold and/or discontinue treatment in the event that: |
|the patient does not attend treatment sessions without good clinical reasons and where all reasonable efforts have been made to ensure that they|
|attend, and/or |
|the patient (or their family/carer) is abusive to staff employed by the PBTC. |
| |
|3.9 Transfer of and Discharge from Care Protocols |
| |
|3.9.1 On completion of the treatment, the Provider will send a copy of the patient’s treatment summary to the referring clinician. This will |
|include details of the treatment that the patient has received at the Provider, including radiotherapy planning. Any management plans for |
|reasonably predictable toxicity, medication changes such as planned steroid reduction, and follow-up shared care should be included. |
| |
|[pic] |
| |
|3.9.2 The proton beam therapy service must have access to: |
|a paediatric oncology service with sufficient capacity to provide shared care for paediatric patients (including, but not limited to, paediatric|
|general anaesthesia, paediatric chemotherapy administration services and paediatric oncology/surgery/neurosurgery/diagnostic servic[pic]es, |
|paediatric intensive care); |
|an age appropriate TYA environment with capacity to support TYA patients; |
|a robust site specialist MDT structure with sufficient capacity to discuss and manage PBT patients; and |
|support to access local and/or charitable access to travel and accommodation as required. |
| |
|3.10 Population covered (including others e.g. the Republic of Ireland) |
|UK Demand. |
|3.10.1 In 2012, the National Radiotherapy Advisory Group (NRAG) identified that there were in excess of 60,000 potentially curative patient |
|episodes of radiotherapy in England each year. Separate commissioning arrangements will be agreed with the Devolved Administrations and |
|capacity may also be available to other countries. |
| |
|3.10.2 The original list of tumours produced in the NRAG report in 2007 estimated that 1,500 cases might benefit from PBT in the UK. Clinical |
|commissioning policies will set out the indications for treatment and this list will continue to be updated in accordance with international |
|evidence and clinical consensus, as defined by NHS England. |
| |
|3.10.3 Category 1, indications are those indications for which there is sufficient supporting clinical and cost effectiveness evidence, and |
|these form the basis of the UK service as routinely commissioned by NHS England (please note that access for other nations will be determined by|
|their respective commissioning policies). |
|3.10.4 Clinical indications outside of the “core” indications for PBT, Category 2, fall into the category of evaluative commissioning, which |
|tend to be indications for which there is strong clinical consensus of potential gain but which are not so well evidenced. Funding these |
|indications, which includes an element of clinical trials, involves a commitment to collect and build the evidence for that indication, for |
|potential inclusion in the list of “core” indications. As many of these tumours are very rare, it is difficult to obtain clinical evidence in |
|the conventional way. |
| |
|3.10.5 Evidence Base [DN: to be updated when the current evidence review is completed] |
|The current evidence base is small but will develop over time. The NHS England commissioning team, Clinical Reference Group (CRG) and other |
|bodies will keep international clinical evidence under review, particularly as it will involve clinical trials wherever possible and a high |
|degree of prioritisation due to the limited capacity. The following partners are involved in this process: |
| |
|National Cancer Research Institute; Clinical and Translational Radiotherapy Research Working Group (NCRI, CTRAD); |
|National Institute for Health Research; |
|Cancer Research UK; and |
|On-going international fora to consider appropriate indications eg Particle Therapy Co-operation Group. |
| |
|3.11 Any acceptance and exclusion criteria and thresholds |
| |
|3.11.1 Patients are excluded from these services if they do not meet the eligibility criteria set out within published NHS England clinical |
|commissioning policies or other agreed evaluation / access schemes or have not been approved under NHS England’s individual funding request |
|(IFR) processes. |
|3.11.2 The eligibility criteria will evolve as the PBT service is established and develops. Reference should be made to the extant NHS England |
|clinical commissioning policies. |
| |
|3.12 Interdependencies with other services/providers |
|3.12.1 The PBTC must be co-located with a conventional/advanced photon (X-Ray) and electron radiotherapy service to support: |
|integrated photon (X-Ray) and electron treatment required for some patients; |
|transfer and maintenance of best practice in radiotherapy delivery; |
|contingency planning in the event of equipment ; and |
|wider staff group development and training. |
| |
|4. Applicable Service Standards |
| |
|4.1 Applicable national standards e.g. NICE |
| |
|4.1.1 PBT is a highly specialised service and should only be given in commissioned radiotherapy centres that have the requisite clinical, |
|scientific and physics support. Supporting services must adhere to appropriate national and local guidance and quality standards, including |
|(not exhaustively): |
|‘Improving Outcomes in Children and Young People with Cancer’ guidance, NICE |
| |
|4.1.2 For both paediatric and Teenage & Young Adult patients (TYA, from 16-24 years of age inclusive), services should adhere to the principles |
|set out in the NICE Improving outcomes in children and young people with cancer guidance. |
| |
|() and associated Quality Standard ‘Children and young people with cancer’ |
|() |
| |
|Children’s Cancer Primary Treatment Centres (PTC) |
|4.1.3 Paediatric PBT services (for patients up to but not including 16 years of age) will only be delivered in the designated NHS PBTC centres |
|and should only receive referrals from tPTCs within England. Referrals from outside e.g. Devolved Administrations should only be made from |
|centres meeting the standards of the CCLG. The consultant clinical oncologist(s) should also be a member of the CCLG and radiotherapy discipline|
|subgroup. |
|(CCLG- ) |
| |
|‘Improving Outcomes for people with Sarcoma’ guidance, NICE |
|4.1.4 [DN: Need to outline key points and links to the guidance here] |
|() |
| |
|‘Service Guidance for improving outcomes for people with brain and other central nervous system tumours’, NICE |
|4.1.5 [DN: Need to outline key points and links to the guidance here] |
|() |
| |
|4.2 Applicable Local Standards |
| |
|Training /Education |
|4.2.1 PBTCs must ensure the provision of suitably trained, qualified and experienced site specialist oncology teams with an adequate core of |
|medical and non-medical registered practitioners dedicated to the delivery of the PBT service. To this end, PBTCs must be able to demonstrate |
|that their proton staffing structures are independently robust at all times and that patient treatment will not be impacted in any way by the |
|PBTC’s provision of other radiotherapy services. PBTCs will also adhere to and maintain set minimum staffing levels and skill sets for the |
|treatment of proton beam therapy patients across the entire treatment pathway. This will also include the ability to demonstrate compliance in |
|terms of age appropriate treatment in proton services. |
| |
| |
|4.2.2 There will be a need to employ/engage and begin training staff in advance of services becoming operational. Staff must receive appropriate|
|training and some will be provided with hands-on training and experience at overseas centres. Competency assessment will form an integral part |
|of training for all staff. Staff groups included in the provision of proton beam therapy services include: |
|clinical oncologists and other doctors involved in the immediate supportive and concurrent care of PBT patients, including paediatric |
|oncologists, paediatric anaesthetists, neurosurgeons etc; |
|Clinical Scientists and physics staff; |
|clinical technologists including dosimetrists; mould room, and engineering and workshop staff |
| |
|therapeutic radiographers and supporting roles and practice educators roles including paediatric specialists and diagnostic radiographers; |
|specialist nurses; |
|physiotherapists; |
|psychology and psycho-social care support staff; |
|play therapists; |
|educational support for children; |
|immobilisation technicians; and |
|dedicated management and administrative support posts; |
|Quality Assurance lead ( maybe linked to wider Radiotherapy Service) |
| |
|4.2.3 All staff should receive annual performance appraisal/ reviews in line with the NHS Trust policy in order to support staff development, |
|and a policy should be in place to support this. Clear training policies should be in place to enable to both maintain and develop their |
|specialist skills and knowledge to further enhance services for patients, which should include: |
|how to support delivery of age appropriate care; |
|time allocated for mandatory training and to maintain and develop cancer knowledge and skills; |
|time allocated for training on PBT equipment in accordance with relevant standards; |
|time allocated to enable continuing professional development (CPD) in the related field. |
|Learning from Incidents, errors and near misses |
|Identifying time to share learning and good practice to the wider radiotherapy community via conference and events |
|Research (for those in specific research roles but also for others working in the centre) |
| |
|4.3 Incidents Requiring Reporting Procedure |
|4.3.1 The PBTC will notify, as required under IR(ME)R (see section xxx) the Commissioner of any incident requiring a reporting procedure within |
|48 hours of the incident taking place. The linked document ‘Serious Incident Framework’ sets out what constitutes a Serious Incident and the |
|actions that may need to be taken in the event of a Serious Incident taking place: |
| |
| |
|4.3.2 For the purpose of this particular service, the PBTC will also notify the Commissioner on a quarterly basis through a structured reporting|
|system of: |
|the number of patients not attending treatment sessions without good clinician reasons and where all reasonable efforts have been made to ensure|
|that they attend; |
|the number of patients (or their families/carers) not observing planned transport arrangements; |
|the number of patients (or their families/carers) not observing advised accommodation arrangements that is compatible with safe medical care; |
|the number of patients (or their families/carers) under the influence of drugs and/or significant amounts of alcohol; |
|the number of patients (or their families/carers) being a danger to themselves or others. |
| |
|4.4 Patient and carer information |
|4.4.1 In line with national guidance patient and carer information must be provided which covers generic and tumour specific information for |
|patients with cancer. |
| |
|4.4.2 The information provided must be appropriate to the age and competency of the patient and must be provided in a variety of forms. It |
|should follow the principles of the national “Information Prescription”. |
| |
|4.4.3 Patient and carer information must be provided which covers the treatment plan and patient pathway, how to access care out of hours and |
|the shared care arrangements with paediatric and other oncology services. |
| |
|4.5 Audit and Clinical Governance |
|4.5.1 The PBTC providers should record and audit: |
|source of referral and discharge destination; |
|capacity and staffing in line with national measures; |
|safe use of anaesthetics in line with national measures; |
|multi-disciplinary training undertaken; |
|how users and carers are involved; |
|information provided to patients and carers; |
|adverse incidents: reportable errors under IR(ME)R, adverse of near miss incidents and complaints; and |
|Radiotherapy Dataset (RTDS) appropriate to these patient groups. |
| |
|4.6 Research and Evaluation |
|4.6.1 Core research, audit and evaluation should be facilitated by the PBTCs in partnership with the Commissioner. |
| |
|4.6.2 Additional funded programmes of research should be facilitated where possible within operational limitations of capacity, with other |
|research partnerships with academic departments, Universities, The Gray Laboratory, Research organisations such as CTRad, NCRI, NIHR, MRC, STFC |
|and charitable funding bodies such as CRUK, Macmillan and single diagnosis oriented or patient group specific charities. |
| |
|5. Applicable quality requirements and CQUIN goals |
| |
|Applicable quality requirements (See Schedule 4 Parts A-D) |
| |
|Applicable CQUIN goals (See Schedule 4 Part E) |
| |
|The terms of the Development Agreement will apply to CQUIN. |
| |
|6. Location of Provider Premises |
| |
|The Provider’s Premises are located at: |
| |
|o University College Hospitals London, former site of the Odeon Cinema, Tottenham Court Road, and the Rosenheim Building, Huntley Street, London|
|NW1 2BU |
| |
|The Christie Hospital, 550 Wilmslow Road, Manchester M20 4BX |
| |
|7. Individual Service User Placement |
| |
|Insert details including price where appropriate of any individual service user placement e.g. mental health. This is likely to be relevant |
|where the service provides tailored specialist placements. It may also be used to record any specialist equipment that is provided as part of an|
|individual care pathway. |
Appendix Two
Quality standards specific to the service using the following template:
|Quality Requirement |Threshold |Method of Measurement |Consequence of breach |
|Domain 1: Preventing people dying prematurely |
|Insert text | | | |
|Domain 2: Enhancing the quality of life of people with long-term conditions |
|Insert text | | | |
|Domain 3: Helping people to recover from episodes of ill-health or following injury |
|Insert text | | | |
|Domain 4: Ensuring that people have a positive experience of care |
|Insert text | | | |
|Domain 5: Treating and caring for people in a safe environment and protecting them from avoidable harm |
|Insert text | | | |
|The following sections are for information and are a direct lift from the current Radiotherapy Specification in relations to paediatric |
|and TYA services |
| |
|Additional standards for the provision of services to children |
| |
|Aims and objectives of service |
| |
|This specification to annexe applies to all children’s services and outlines generic standards and outcomes that would fundamental to all|
|services |
| |
|The generic aspects of care: |
|The Care of Children in Hospital (HSC 1998/238) requires that: |
|Children are admitted to hospital only if the care they require cannot be as well provided at home, in a day clinic or on a day basis in |
|hospital. |
|Children requiring admission to hospital are provided with a high standard of medical, nursing and therapeutic care to facilitate speedy |
|recovery and minimise complications and mortality. |
|Families with children have easy access to hospital facilities for children without needing to travel significantly further than to other|
|similar amenities |
|Children are discharged from hospital as soon as socially and clinically appropriate and full support provided for subsequent home or day|
|care. |
|Good child health care is shared with parents/carers and they are closely involved in the care of their children at all times unless, |
|exceptionally, this is not in the best interest of the child; accommodation is provided for them to remain with their children overnight |
|if they so wish. |
| |
|Service description/care pathway |
| |
|All paediatric specialised services have a component of primary, secondary, tertiary and even quaternary elements. |
| |
|The efficient and effective delivery of services requires children to receive their care as close to home as possible dependent on the |
|phase of their disease. |
| |
|Services should therefore be organised and delivered through “integrated pathways of care” (National Service Framework for children, |
|young people and maternity services, Department of Health & Department for Education and Skills, London, 2004) |
| |
|Interdependencies with other services |
| |
|All services will comply with ‘Commissioning Safe and Sustainable Specialised Paediatric Services: A Framework of Critical |
|Interdependencies’ – Department of |
|Health |
| |
|Imaging |
| |
|All services will be supported by a three-tier imaging network (‘Delivering quality imaging services for children’, Department of Health |
|13732 March, 2010). There is an imaging accreditation system: ISAS and it is recommended that these services are accredited to this |
|quality standard. |
| |
| |
| |
|Within the network: |
|It will be clearly defined which imaging test or interventional procedure can be performed and reported at each site |
|robust procedures will be in place for image transfer for review by a specialist radiologist, these will be supported by appropriate |
|contractual and information governance arrangements |
|robust arrangements will be in place for patient transfer if more complex imaging or intervention is required |
|common standards, protocols and governance procedures will exist throughout |
|all radiologists, and radiographers will have appropriate training, supervision and access to continuing professional development |
|all equipment will be optimised for paediatric use and use specific paediatric software |
| |
|College of Radiographers and Association of Paediatric Radiographers |
| |
|Practice Standards for the Imaging of Children and Young People |
| |
| |
| |
|reference British Society of Paediatric Radiology/ College of Radiographers guidance |
|Imaging Children; immobilisation, distraction techniques and use of sedation |
| |
| |
|Specialist Paediatric Anaesthesia |
| |
|Wherever and whenever children undergo anaesthesia and surgery, their particular needs must be recognised and they should be managed in |
|separate facilities, and looked after by staff with appropriate experience and training.1 All UK anaesthetists undergo training which |
|provides them with the competencies to care for older babies and children with relatively straightforward surgical conditions and without|
|major co-morbidity. However those working in specialist centres must have undergone additional (specialist) training2 and should maintain|
|the competencies so acquired3 *. These competencies include the care of very young/premature babies, the care of babies and children |
|undergoing complex surgery and/or those with major/complex co-morbidity (including those patients already requiring intensive care |
|support). |
| |
|As well as providing an essential co-dependent service for surgery, specialist anaesthesia and sedation services may be required to |
|facilitate radiological procedures and interventions (for example Magnetic Resonance Imaging (MRI) scans and percutaneous nephrostomy) |
|and medical interventions (for example joint injection and intrathecal chemotherapy), and for assistance with vascular access in babies |
|and children with complex needs such as intravenous feeding. |
| |
|Specialist acute pain services for babies and children are organised within existing departments of paediatric anaesthesia and include |
|the provision of agreed (hospital |
| |
| |
|wide) guidance for acute pain, the safe administration of complex analgesia regimes including epidural analgesia, and the daily input of |
|specialist anaesthetists and acute pain nurses with expertise in paediatrics |
| |
|*The Safe and Sustainable reviews of paediatric cardiac and neurosciences in England have noted the need for additional training and |
|maintenance of |
|competencies by specialist anaesthetists in both fields of practice. |
| |
|References |
| |
|Guidelines Paediatric Anaesthetic Services Paediatric anaesthetic services (GPAS). RCoA 2010 rcoa.ac.uk |
|Certificate of Completion of Training (CCT) in Anaesthesia 2010 |
|Continuing Professional Development (CPD) matrix level 3 |
| |
|Specialised Child and Adolescent Mental Health Services (CAMHS) |
| |
|The age profile of children and young people admitted to specialised CAMHS day/in-patient settings is different to the age profile for |
|paediatric units in that it is predominantly adolescents who are admitted to specialised CAMHS in-patient settings, including over-16s. |
|The average length of stay is longer for admissions to mental health units. Children and young people in specialised CAMHS day/in- |
|patient settings generally participate in a structured programme of education and therapeutic activities during their admission. |
| |
|Taking account of the differences in patient profiles the principles and standards set out in this specification apply with modifications|
|to the recommendations regarding the following |
|Facilities and environment – essential Quality Network for In-patient CAMHS (QNIC) standards should apply |
| |
|Staffing profiles and training - essential QNIC standards should apply. |
|The child/ young person’s family are allowed to visit at any time of day taking account of the child / young person’s need to participate|
|in therapeutic activities and education as well as any safeguarding concerns. |
|Children and young people are offered appropriate education from the point of admission. |
|Parents/carers are involved in the child/young person’s care except where this is not in the best interests of the child / young person |
|and in the case of young people who have the capacity to make their own decisions is subject to their consent. |
|Parents/carers who wish to stay overnight are provided with accessible accommodation unless there are safeguarding concerns or this is |
|not in the best interests of the child/ young person. |
| |
| |
| |
| |
|Applicable national standards e.g. NICE, Royal College |
| |
|Children and young people must receive care, treatment and support by staff registered by the Nursing and Midwifery Council on the parts |
|of their register that permit a nurse to work with children (Outcome 14h Essential Standards of Quality and Safety, Care Quality |
|Commission, London 2010) |
|There must be at least two Registered Children’s Nurses (RCNs) on duty 24 hours a day in all hospital children’s departments and wards. |
|There must be an Registered Children’s Nurse available 24 hours a day to advise on the nursing of children in other departments (this |
|post is included in the staff establishment of two RCNs in total). |
| |
|Accommodation, facilities and staffing must be appropriate to the needs of children and separate from those provided for adults. All |
|facilities for children and young people must comply with the Hospital Build Notes HBN 23 Hospital Accommodation for Children and Young |
|People NHS Estates, The Stationary Office 2004. |
| |
|All staff who work with children and young people must be appropriately trained to provide care, treatment and support for children, |
|including Children’s Workforce Development Council Induction standards (Outcome 14b Essential Standards of Quality and Safety, Care |
|Quality Commission, London 2010). |
| |
|Each hospital which admits inpatients must have appropriate medical cover at all times taking account of guidance from relevant expert or|
|professional bodies (National Minimum Standards for Providers of Independent Healthcare, Department of Health, London 2002).”Facing the |
|Future” Standards, Royal College of Paediatrics and Child Health. |
| |
|Staff must carry out sufficient levels of activity to maintain their competence in caring for children and young people, including in |
|relation to specific anaesthetic and surgical procedures for children, taking account of guidance from relevant expert or professional |
|bodies (Outcome 14g Essential Standards of Quality and Safety, Care Quality Commission, London 2010). |
| |
|Providers must have systems in place to gain and review consent from people who use services, and act on them (Outcome 2a Essential |
|Standards of Quality and Safety, Care Quality Commission, London 2010). These must include specific arrangements for seeking valid |
|consent from children while respecting |
|their human rights and confidentiality and ensure that where the person using the service lacks capacity, best interest meetings are held|
|with people who know and understand the person using the service. Staff should be able to show that they know how to take appropriate |
|consent from children, young people and those with learning disabilities (Outcome 2b) (Seeking Consent: working with children Department |
|of Health, London 2001). |
| |
|Children and young people must only receive a service from a provider who takes steps to prevent abuse and does not tolerate any abusive |
|practice should it occur. Outcome 7 Essential Standards of Quality and Safety, Care Quality Commission, London 2010, defines the |
|standards and evidence required from providers in this regard). Providers minimise the risk and likelihood of abuse occurring by: |
|ensuring that staff and people who use services understand the aspects of the safeguarding processes that are relevant to them. |
|ensuring that staff understand the signs of abuse and raise this with the right person when those signs are noticed. |
|ensuring that people who use services are aware of how to raise concerns of abuse. |
|having effective means to monitor and review incidents, concerns and complaints that have the potential to become an abuse or |
|safeguarding concern. |
|having effective means of receiving and acting upon feedback from people who use services and any other person. |
|taking action immediately to ensure that any abuse identified is stopped and suspected abuse is addressed by: |
|having clear procedures followed in practice, monitored and reviewed that take account of relevant legislation and guidance for the |
|management of alleged abuse |
|separating the alleged abuser from the person who uses services and others who may be at risk or managing the risk by removing the |
|opportunity for abuse to occur, where this is within the control of the provider |
|reporting the alleged abuse to the appropriate authority |
|reviewing the person’s plan of care to ensure that they are properly supported following the alleged abuse incident |
|using information from safeguarding concerns to identify non-compliance, or any risk of non-compliance, with the regulations and to |
|decide what will be done to return to compliance. |
|working collaboratively with other services, teams, individuals and agencies in relation to all safeguarding matters and has safeguarding|
|policies that link with local authority policies. |
|participating in local safeguarding children boards where required and understand their responsibilities and the responsibilities of |
|others in line with the Children Act 2004. |
|having clear procedures followed in practice, monitored and reviewed in place about the use of restraint and safeguarding. |
|taking into account relevant guidance set out in the Care Quality Commission’s Schedule of Applicable Publications |
|ensuring that those working with children must wait for a full CRB disclosure before starting work. |
|training and supervising staff in safeguarding to ensure they can demonstrate the competences listed in Outcome 7E of the Essential |
|Standards of Quality and Safety, Care Quality Commission, London 2010 |
| |
|All children and young people who use services must be: |
|fully informed of their care, treatment and support. |
|able to take part in decision-making to the fullest extent that is possible. |
|asked if they agree for their parents or guardians to be involved in decisions they need to make. |
| |
|(Outcome 4I, Essential Standards of Quality and Safety, Care Quality Commission, London 2010) |
| |
|Key Service Outcomes |
| |
|Evidence is increasing that implementation of the national Quality Criteria for Young People Friendly Services (Department of Health, |
|London 2011) have the potential to greatly improve patient experience, leading to better health outcomes for young people and increasing |
|socially responsible life-long use of the NHS. Implementation is also expected to contribute to improvements in health inequalities and |
|public health outcomes e.g. reduced teenage pregnancy and Sexually Transmitted infections (STI), and increased smoking cessation. All |
|providers delivering services to young people should be implementing the good practice guidance which delivers compliance with the |
|quality criteria. |
| |
|Poorly planned transition from young people’s to adult-oriented health services can be associated with increased risk of non-adherence to|
|treatment and loss to follow-up, which can have serious consequences. There are measurable adverse consequences in terms of morbidity and|
|mortality as well as in social and educational outcomes. When children and young people who use paediatric services are moving to access |
|adult services (for example, during transition for those with long term conditions), these should be organised so that: |
|all those involved in the care, treatment and support cooperate with the planning and provision to ensure that the services provided |
|continue to be appropriate to the age and needs of the person who uses services. |
| |
|The National Minimum Standards for Providers of Independent Healthcare, (Department of Health, London 2002) require the following |
|standards: |
|A16.1 Children are seen in a separate out-patient area, or where the hospital does not have a separate outpatient area for children, they|
|are seen promptly. |
|A16.3 Toys and/or books suitable to the child’s age are provided. |
|A16.8 There are segregated areas for the reception of children and adolescents into theatre and for recovery, to screen the children and |
|adolescents from adult patients; the segregated areas contain all necessary equipment for the care of children. |
|A16.9 A parent is to be actively encouraged to stay at all times, with accommodation made available for the adult in the child’s room or |
|close by. |
|A16.10 The child’s family is allowed to visit him/her at any time of the day, except where safeguarding procedures do not allow this |
|A16.13 When a child is in hospital for more than five days, play is managed and supervised by a qualified hospital play specialist. |
|A16.14 Children are required to receive education when in hospital for more than five days; the Local Education Authority has an |
|obligation to meet this need and are contacted if necessary. |
|A18.10 There are written procedures for the assessment of pain in children and the provision of appropriate control. |
|All hospital settings should meet the Standards for the Care of Critically Ill |
|Children (Paediatric Intensive Care Society, London 2010). |
| |
|There should be age-specific arrangements for meeting Regulation 14 of the Health |
|and Social Care Act 2008 (Regulated Activities) Regulations 2010. These require: |
|a choice of suitable and nutritious food and hydration, in sufficient quantities to meet service users’ needs |
|food and hydration that meet any reasonable requirements arising from a service user’s religious or cultural background |
|support, where necessary, for the purposes of enabling service users to eat and drink sufficient amounts for their needs. |
|for the purposes of this regulation, “food and hydration” includes, where applicable, parenteral nutrition and the administration of |
|dietary supplements where prescribed. |
|providers must have access to facilities for infant feeding, including facilities to support breastfeeding (Outcome 5E, of the Essential |
|Standards of Quality and Safety, Care Quality Commission, London 2010) |
| |
|All paediatric patients should have access to appropriately trained paediatric trained dieticians, physiotherapists, occupational |
|therapists, speech and language therapy, psychology, social work and CAMHS services within nationally defined access standards. |
|All children and young people should have access to a professional who can undertake an assessment using the Common Assessment Framework |
|and access support from social care, housing, education and other agencies as appropriate |
|All registered providers must ensure safe use and management of medicines, by means of the making of appropriate arrangements for the |
|obtaining, recording, handling, using, safe keeping, dispensing, safe administration and disposal of medicines (Outcome 9 Essential |
|Standards of Quality and Safety, Care Quality Commission, London 2010). For children, these should include specific arrangements that: |
|ensure the medicines given are appropriate and person-centred by taking account of their age, weight and any learning disability |
|ensure that staff handling medicines have the competency and skills needed for children and young people’s medicines management |
|ensure that wherever possible, age specific information is available for people about the medicines they are taking, including the risks,|
|including information about the use of unlicensed medicine in paediatrics. |
| |
|Many children with long term illnesses have a learning or physical disability. |
|Providers should ensure that: |
|they are supported to have a health action plan |
|facilities meet the appropriate requirements of the Disability Discrimination Act 1995 |
|they meet the standards set out in Transition: getting it right for young people. |
|Improving the transition of young people with long-term conditions from children's to adult health services, Department of Health, 2006, |
|London |
|Service Specification No. |Cross reference External Beam Radiotherapy |
|Service |Paediatric Radiotherapy |
|Commissioner Lead | |
|Provider Lead | |
|Period |12 months |
|Date of Review | |
| |
|2. Scope |
| |
|2.1 Aims and objectives of service |
| |
|The care of children and teenagers with cancer |
| |
|Cancer in children is rare. About 1,500 children under the age of 16 years develop cancer or leukaemia each year in the United Kingdom. |
|They have a wide variety of diseases, each of which comes with a range of risk factors. These govern treatment and outcome, and when |
|coupled with differing family circumstances mean that each child is unique. Patient care is complex and involves the input of many |
|different healthcare professionals. It is coordinated by specialised multi-disciplinary teams at one of 19 principal treatment centres, |
|and is often delivered in conjunction with staff at paediatric oncology shared care units closer to home and in the community. Rarely, the|
|best type of radiotherapy for an individual patient may not be available at the closest paediatric radiotherapy centre, and referral to |
|another city or even abroad may be required. |
| |
|Radiotherapy is a component of treatment for many children with malignant disease. While this contributes to the likelihood of cure, it |
|can also result in adverse effects. For best results, radiotherapy must be given by an experienced and well-trained team in a |
|well-equipped department with appropriate specialist paediatric and adolescent support. The different needs of teenagers compared with |
|younger children must be recognised. Excellent communication both between colleagues and with patients and their families is essential. |
|Research to clarify the role and to improve the effectiveness of radiotherapy is also necessary. |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
| |
|As children’s cancer is rare, paediatric clinical oncologists should develop professional networks through membership of organisations |
|like the Children’s Cancer and Leukaemia Group and the Paediatric Radiation Oncology Society and by attending meetings and conferences. |
| |
| |
|2.2 Service description/care pathway |
| |
|The pathway is described on page 34 |
| |
|For children and young people with cancer, Multidisciplinary team (MDT) working is an integral and essential part of modern cancer |
|management. The primary function of an MDT is clinical to ensure that: |
|All relevant information is available |
|All the relevant treatment options are considered |
|Options and decisions about patient care are documented [ref] |
| |
|This is particularly important for the optimum management of paediatric tumours because of their rarity and complexity of multi-modality |
|treatment. The structure of MDT working has been formalised by NICE through its Improving Outcomes Guidance for Children and Young People |
|with Cancer. |
| |
|Membership will include paediatric and clinical oncologists, surgeons, radiologists, pathologists, and other relevant healthcare |
|professionals. There will be a core membership and an extended membership which brings other expertise as appropriate. Established staff |
|should be facilitated to attend paediatric oncology and radiotherapy meetings and courses to maintain and improve their knowledge base |
|and skills |
| |
|It is essential that clinical oncologists with responsibility for paediatric radiotherapy are fully integrated core members of the |
|paediatric oncology MDT to ensure that patients for whom radiotherapy may be appropriate are not overlooked. Therapy radiographers can |
|also make a valuable contribution to these MDT meetings. |
| |
|A documented discussion with a clinical oncologist of a patient at the MDT, although essential, is not of itself a referral. The |
|discussion should be followed up with a formal written referral containing all relevant information to enable good communication and |
|appropriate treatment in the light of the family circumstances |
| |
|The planning, delivery and aftercare of radiotherapy for children and young people is a complex multi-professional activity. It requires |
|clinical oncologists, therapy radiographers, mould room staff and play specialists supported by nurses, anaesthetic staff, physicists and |
|dosimetrists, and psychologists or psychotherapists. The members of this team must have regular meetings to communicate about the |
|requirements of individual patients. |
| |
| |
|2.3 Population covered |
| |
|Delivery of care to children has complexities which do not exist in adult practice, and so more time is often needed for consultation, |
|preparation, planning and treatment. It is essential that all members of the team have training in, experience of, and continuing |
|development in paediatric issues. ‘Paediatric’ practice ranges from babies and toddlers through primary school age children to younger |
|teenagers. Patients should be treated in age appropriate ways in age appropriate facilities. |
| |
|There should be integration of the therapeutic radiographer into the paediatric oncology multi-disciplinary team. The radiographer must |
|have specific training and take the lead responsibility for children and young people. |
| |
|All radiographers in a department treating children should receive Level 1 training for safeguarding children. |
| |
|Children may or may not have the capacity to consent. This depends not just on age but more importantly on their level of development and |
|understanding. At 16 years of age a young person can be presumed to have the capacity to consent. Under 16, a young person may have |
|capacity, depending on their maturity and ability to understand what is involved. Children with capacity should be encouraged to involve |
|their parents in decision making. |
| |
|The family should be offered the opportunity to receive a written summary of the radiotherapy consultation. This should normally be a |
|summary produced specifically for the family and appropriate resources in terms of time and secretarial support should be made available |
|to enable copying of letters to patient’s and or their families. |
| |
|Immobilisation is a prerequisite for accurate radiotherapy. Most children older than three to four years of age can be encouraged to lie |
|still with good radiotherapy play specialist input. Anaesthesia is required for younger children, and some older patients with learning |
|difficulties or behavioural problems, and is more likely to be needed if beam-directing shells or prone positioning are used. |
| |
| |
|2.4 Interdependencies with other services |
| |
|Safe paediatric anaesthesia, which is conducted in an area remote from the normal environment of anaesthetists with immediately available |
|support in the event of a problem, requires an experienced team. This should be lead by a consultant paediatric anaesthetist supported by |
|an operating department practitioner and nurse. There should be a full range of paediatric anaesthetic and resuscitation equipment |
|available. |
| |
|A paediatric anaesthetic service should be available as often as necessary. This is at least five times a week on a regular basis, and a |
|weekend service may occasionally be required for emergencies or to compensate for gaps caused by machine breakdown or public holidays. As |
|some current treatment protocols call for hyperfractionated, accelerated treatment, a twice a day service may be needed on occasions |
| |
|The play specialist will make an initial assessment as to whether radiotherapy without the need for anaesthesia is possible. If it is, or |
|if there is uncertainty, additional play sessions may be scheduled to help to prepare the child. |
| |
|Excellent communication skills are essential for all oncologists, and all should have been on an advanced communication skills course. |
|Paediatric clinical oncologists need to develop expertise in talking to children and young people in an age appropriate way, and also in |
|communicating well with parents and other family members. |
| |
|Patients and their families need to be seen regularly through treatment – usually at weekly intervals. This is the opportunity for |
|monitoring of toxicity, and to answer questions which often arise after the initial consultations. |
| |
|It is essential that children undergoing radiotherapy or chemo-radiotherapy have rapid access to expert paediatric supportive care to |
|manage complications of their disease, toxicity of treatment and co-morbidity. This will often be the referring paediatric oncology team, |
|or may be shared care paediatricians in local hospitals closer to that patient’s home. |
| |
|Common problems include myelosuppression with the need for blood product support, neutropenic sepsis, fluid and electrolyte disturbances |
|if there is severe vomiting or diarrhoea, and the need for neurosurgical investigation or intervention if obstructive hydrocephalus |
|develops. Paediatric support is also needed in the radiotherapy department for resuscitation, and paediatricians should be immediately |
|available during the administration of IV contrast in case of an adverse reaction. |
| |
|Not all late effects of cancer treatment are caused by radiotherapy – surgery and chemotherapy can also result in permanent functional or |
|cosmetic impairment. Some late effects are more likely in some individuals because of a genetic predisposition. Late effects should be |
|discussed in the wider context, not just in relation to radiotherapy. |
| |
Suggested protocol for paediatric verification
|Fraction 1 (Images acquired & |Acquire orthogonal image set, minimising dose to critical structures (where possible) |
|auctioned before treatment |If field edge verification is needed, where possible image all treatment fields |
|delivery) |Assess for and correct gross errors immediately |
|Fractions 2 & 3 |Image orthogonal set |
| |Assess each image and correct gross errors for each fraction where necessary |
|Action before Fraction 4 |Calculate the overall systematic error (average of the isocentric set-up error) in each orthogonal |
| |direction |
| |Apply the systematic set-up error correction |
|Fractions 4 & 5 |If the set-up has been corrected, confirm by repeat imaging (typically two or more fractions) |
| |If practical, calculate the new overall systematic set-up error and correct |
|Weekly & first day of each |Image orthogonal set each week |
|phase of treatment plan |Assess each image and correct gross errors for each fraction where necessary |
| |If set-up error is greater than the tolerance value, check by repeat imaging (typically two or more |
| |fractions) |
| |Apply any systematic set-up error correction |
|Daily verification may be required for treating tumours planned with very small margins or hypofractionated techniques |
|Patient immobalisation devices to help maintain treatment position is essential |
|Anaesthesia may be necessary for adequate immobilisation |
|Concomitant exposures should be especially considered in children and adolescents |
|Tolerances and action levels to use will vary, particularly with the immobilisation and treatment technique used as well as compliance of|
|the patient and should be chosen accordingly |
Anatomical match structures
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