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CHILDREN AND YOUNG PEOPLE’S         SPECIALISED SERVICES PROJECT (CYPSSP)All Wales Anaesthesia and Surgery Standards for C...
Foreword     Edwina Hart, AM, MBE, Minister for Health and Social ServicesThe best investment we can make in the future of...
CONSULTATION QUESTIONS1. Please state your name, title and place of work (please also state if   you want your name withhe...
7. Can you foresee any barriers to the implementation of these   standards? If so, are there any actions which the Welsh A...
Children and Young People’s Specialised ServicesIntroductionIn 2002, the Specialised Health Service Commission for Wales u...
- Maxillofacial    - Cleft Lip and Palate♦   Paediatric Nephrology♦   Paediatric Cardiology and Congenital Cardiac Service...
The contribution made by EWG members is greatly appreciated. We areparticularly grateful to the children, young people and...
of the NHS in Wales 14 issued by the Welsh Assembly Government in April2008, the Minister for Health and Social Services i...
and pathways of care, clinical audit, training and continuing professionaldevelopment.It should be acknowledged that a chi...
10
Anaesthetic and Surgery Services for the Children and Young People of                               WalesThis document app...
Paediatric Surgery Services for the Children and Young People of WalesA clear distinction must be made between specialist ...
•   Royal College of Surgeons of England – Surgery for Children –       Delivering a First Class Service18 (First Publishe...
at DGH, and that suitable anaesthetic care is provided in larger DGHs toenable maintenance of services for other surgical ...
Paediatric Surgery Service ModelsCurrent Service ModelSouth and Mid WalesChildren requiring specialised surgery, whether e...
Proposed Service ModelThe most important consideration is that the service is of the highest qualityand safe for the child...
South and Mid WalesSpecialist Paediatric SurgeryAll specialist (elective and emergency) paediatric surgery is referred to ...
North WalesSpecialist Paediatric SurgeryRLCH will continue as the lead centre for all elective and emergencypaediatric sur...
Paediatric Anaesthetic Services for the Children and Young People of                                WalesThe provision of ...
Paediatric Anaesthetic Service ModelsCurrent Service ModelSouth and Mid WalesChildren requiring specialised elective or em...
Proposed Service ModelThe most important considerations are that the service is of the highest qualityand safe for the chi...
North WalesAnaesthetic services for children undergoing General Paediatric Surgery inDGHs in North Wales should be co-ordi...
Standard 1: Anaesthetic and General Surgery - Environment andFacilitiesRationale: Children requiring anaesthetic care and/...
service.7 (KA 7.16),17 (KA 2.8)          TrustsExamples of some of the Healthcare Standards for Wales (HCS) thatmap across...
Standard 2: Anaesthetic Care for Elective and Emergency Surgery in AllSettingsRationale: All children and young people req...
2.10 All recovery areas caring for children            Trusts      Less thanhave access to a Child Branch/RSCN at all     ...
Standard 3: Elective General Surgery for all age groups in All SettingsRationale: All children and young people requiring ...
3.8 There is access to radiological services for     Trusts   Less than 1children throughout the MCN for investigations   ...
Standard 4: Emergency General Surgery for All Age Groups in AllSettingsRationale: Emergency general surgical care for chil...
Standard 5: Specialist Paediatric SurgeryRationale: All children and young people requiring specialised surgery aremanaged...
5.7 The MCN has          access to      HCW           1-3 yearscomprehensive   and      appropriate    LHBsinvestigations....
Standard 6: Anaesthetics and General Surgery – Evidence BaseProfessional Education and TrainingRationale: All members of t...
Trusts                                                    MCN6.8 External peer review is part of the annual      HCW      ...
Paediatric Trauma and Orthopaedic Services for the Children and YoungPeople of WalesThe delivery of orthopaedic care has c...
The current key document that has informed the development of the traumaand orthopaedic standards is Children’s Orthopaedi...
Trauma and Orthopaedic Service ModelCurrent service modelsSouth and Mid WalesIn South Wales there are three hospitals with...
Specialist spinal surgery for children and young people takes place at UHWwhere there are four spinal surgeons with an int...
The management of the child with;   • Cerebral Palsy including Botulinum toxin, multilevel surgery and      rehabilitation...
Proposed Service ModelsSouth and Mid WalesSpecialist paediatric orthopaedic services to continue at UHW, MorristonHospital...
Standard 7: Trauma and OrthopaedicsRationale: All children and young people requiring management of theirtrauma and orthop...
7.7 Guidelines for the management, treatment          Trusts      Less than 1and onward referral of fractures and soft tis...
7.17 A paediatric physiotherapist is present at        Trusts      Less than 1paediatric orthotic clinics.                ...
Paediatric Ear, Nose and Throat (ENT) Services for the Children and                        Young People of WalesPaediatric...
The evidence base for the ENT service remains underdeveloped; however,key documents have helped inform the development of ...
Ear, Nose and Throat (ENT) Service ModelCurrent Service ModelsSouth and Mid WalesThe lead centre for specialist ENT surger...
Standard 8: Ear Nose and Throat (ENT)Rationale: All children and young people requiring management of their ENTcondition h...
8.7 Each Trust has a nominated lead ENT                     Trusts      Less than 1surgeon with responsibility for paediat...
8.19 A care pathway is in place for the joint     Trusts    Less than 1surgical and anaesthetic management of            L...
Paediatric Ophthalmology Services for the Children and Young Peopleof WalesOphthalmic health in children encompasses all t...
•   Neonatology   •   Paediatric critical care/HDU   •   General and community paediatrics   •   Oncology   •   Radiology ...
advocated.7, 38 A list of ophthalmic conditions can be found in Appendix Nine.Where children with these conditions are tre...
Paediatric Ophthalmology Service ModelsCurrent Service ModelSouth and Mid WalesCurrently there are five ophthalmologists n...
Proposed Service ModelsSouth and Mid WalesTo continue current service model with all elements of shared care fullycommissi...
CHILDREN AND YOUNG PEOPLE'S
CHILDREN AND YOUNG PEOPLE'S
CHILDREN AND YOUNG PEOPLE'S
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  1. 1. CHILDREN AND YOUNG PEOPLE’S SPECIALISED SERVICES PROJECT (CYPSSP)All Wales Anaesthesia and Surgery Standards for Children and Young People’s Specialised Healthcare Services Consultation Document 2009
  2. 2. Foreword Edwina Hart, AM, MBE, Minister for Health and Social ServicesThe best investment we can make in the future of Wales is ensuring that highquality and equitable services are provided for our children and young people.The Welsh Assembly Government is committed to ensuring these servicesare in place.This document is one of a series, which address the specific needs of thechildren and young people who require specialised healthcare services. Thisseries has been designed to compliment the National Service Framework forchildren, young people and maternity services in Wales.I encourage you to participate in this consultation to help us ensure that thesestandards have the utmost impact on the health and wellbeing of our childrenand young people with specialised healthcare needs.Edwina Hart AM, MBEMinister for Health and Social Services 2
  3. 3. CONSULTATION QUESTIONS1. Please state your name, title and place of work (please also state if you want your name withheld from the publication of the results of this consultation).2. Some of the key actions within this document have been identified for delivery within 1 year of publication of the standards. Implementation of these key actions has been estimated to be low or no-cost because they are organisational issues or are already being planned for, or implemented, in many areas. Do you agree that the flagged early implementation key actions are the right ones to prioritise for early delivery? Please state which of the flagged key actions you do not believe can be delivered by this deadline and why. Please also state if there are any other key actions which you believe could be delivered by the end of the first year following publication.3. Each key action has the organisations which are responsible for their delivery clearly identified. Are there any key actions which you feel that the organisation you work for is not responsible for delivering? Are there any key actions which you feel your organisation or another organisation could contribute to delivering but has not been listed next to a key action?4. When you read both the universal and service specific documents, please consider the following; Are there are important universal or service specific NEEDS of children, young people and their families which you feel have not been addressed by the key actions in these standards document?5. Every attempt has been made to make each key action clear, specific and measurable to allow for easier audit. Are there any key actions which you feel do not meet the above criteria? If so, can you suggest a form of wording that would improve the key action?6. These documents are aimed at service commissioners and providers, however we have developed the documents with the help of children, young people and their families and therefore hope that they are easily understandable. We have identified some key words in the glossary of each standards document. Are there any terms or phrases used within this document that have not been included in the glossary, but which you feel require definition? 3
  4. 4. 7. Can you foresee any barriers to the implementation of these standards? If so, are there any actions which the Welsh Assembly Government should take to help overcome these barriers?8. From those key actions which are developmental key actions please select the three that you feel will have the greatest impact on the specialised services for children and young people or are essential to develop and rank them in order of priority.9. Do you have any other comments that you would like to make about these document?The consultation period will come to an end of the 1st May 2009. Please send all comments tothe address below by this date. Michelle GreyChildren’s Health and Wellbeing BranchHealth and Social ServicesWelsh Assembly Government2nd FloorCathays ParkCardiffCF10 3NQor tomichelle.grey@wales.gsi.gov.uk 4
  5. 5. Children and Young People’s Specialised ServicesIntroductionIn 2002, the Specialised Health Service Commission for Wales undertook areview of specialised healthcare services for the children and young people ofWales, which identified that these services were being delivered in an ad hocand fragmented way.1, 2 Following this review, the Minister for Health andSocial Services announced that Managed Clinical Networks (MCNs) would bedeveloped to deliver specialised healthcare services for children and youngpeople.3The Children and Young People’s Specialised Services Project (CYPSSP)was established by the Welsh Assembly Government (WAG) to take this workforward. The project’s remit was to: Develop high quality, equitable and sustainable specialised children’s health services across Wales based upon the best available evidence and with children and their carers at the centre of all planning and provision.This would be achieved by the following aims:• To develop service specific standards for specialised healthcare services for the children and young people of Wales• To enable equity of access through effective managed clinical network models for all children and young people in Wales requiring specialised services.The agreed specialised services for the project are:♦ Paediatric Critical Care (standards already published)♦ Neonatal Services♦ Paediatric Neurosciences - Neurosurgery - Neurology - Neurodisability♦ Paediatric Oncology♦ Paediatric Palliative Care♦ Paediatric Specialist Anaesthetics and Surgery - Anaesthetics - General Surgery - Trauma and Orthopaedics - Ear, Nose and Throat - Ophthalmology - Plastic Surgery - Burns 5
  6. 6. - Maxillofacial - Cleft Lip and Palate♦ Paediatric Nephrology♦ Paediatric Cardiology and Congenital Cardiac Services (including access to Cardiac Surgery)♦ Paediatric Endocrinology♦ Paediatric Gastroenterology, Hepatology and Nutrition♦ Paediatric Inherited Metabolic Disease♦ Paediatric RespiratoryThe Standards DocumentsThere is a standards document for each particular specialised servicecontaining key actions (KAs) related to that specific service. There is also aUniversal Standards document, which applies to all specialised servicesincluded in the project. The standards documents are written from an AllWales perspective and apply to all children and young people with thatparticular health need, wherever they live in Wales.4, 5, 6These standards should also be read and used in conjunction with theNational Service Framework for Children, Young People and MaternityServices in Wales (Children’s NSF)7, in particular Chapter 2, “Key actionsuniversal to all children” which is relevant to all services and all children andyoung people.The standards and key actions within the CYPSSP documents apply to allchildren and young people accessing the specific specialised service who are0-18 years of age. However, key actions that relate to transition apply to allyoung people who may require ongoing services beyond this age range. Theage for transition to adult services must be flexible to ensure that all youngpeople are treated by the most appropriate professional and in the mostappropriate setting. This will depend on the young persons mental, emotionaland physical development.Purpose of StandardsThe standards and their key actions have been developed to provide a basisfor service commissioners and providers to plan and deliver effectiveservices.8, 9 They are to be used to benchmark current services and inform thedevelopment of future services to meet the specialised health needs ofchildren and young people across Wales.10Developing the StandardsThe standards for each service have been developed by an External WorkingGroup (EWG) representative of key stakeholders. Membership details areincluded as Appendix One in each of the service specific standardsdocuments. 6
  7. 7. The contribution made by EWG members is greatly appreciated. We areparticularly grateful to the children, young people and parents who have beeninvolved in the development of this work.11,12The standards have been Quality Assured by a Project Steering Group (SG)comprised of strategic stakeholders, details of which are included asAppendix Two in the service specific documents.The standards have also been mapped against the Welsh AssemblyGovernment’s Healthcare Standards.13 The Healthcare Standards for Walesset out the Welsh Assembly Government’s common framework of healthcarestandards to support the NHS and partner organisations in providing effective,timely and quality services across all healthcare settings. There are thirty-twoHealthcare Standards covering four domains; The Patient Experience, ClinicalOutcomes, Healthcare Governance and Public Health. These are designed todeliver the improved levels of care and treatment the people of Wales have aright to reasonably expect. The standards will be taken into account by thoseproviding healthcare, regardless of the setting. Examples of how thehealthcare standards relate to the CYPSSP standards are referenced at theend of each section.The Healthcare Standards are used by Healthcare Inspectorate Wales (HIW)as part of its process for assessing the quality, safety and effectiveness ofhealthcare providers and commissioners across Wales.Since the CYPSSP commenced in 2003, three project managers havesuccessfully managed and facilitated the development of the standardsdocuments. We would like to extend our grateful thanks to all of the ProjectManagers, namely Eiri Jones, Sian Thomas and Mary Francis for theircontribution to this work.Delivering the StandardsSome of the key actions can be delivered within a year; however due toworkforce and financial constraints others will take a number of years toachieve. Thus each key action has a timescale for delivery between one andten years.Every attempt has been made to ensure that the key actions are clear andmeasurable. However when terms that cannot be measured such as ‘timely’and ‘appropriate’ have been used it will be for the specific MCN to agree onthe acceptable definition of the term. This will allow each standard and keyaction to reflect the particular needs of each individual specialist service.Whenever ‘children’ are referred to in this document it should be acceptedthat this also includes young people. Reference to ‘parents’ includes mothers,fathers, carers and other adults with responsibility for caring for the children.The standards within this document are based on the current configuration ofthe NHS. Following the consultation of the ‘Proposal to Change the Structure 7
  8. 8. of the NHS in Wales 14 issued by the Welsh Assembly Government in April2008, the Minister for Health and Social Services issued statements on the16th July, 30th September and 1st November 2008 outlining plans for the futureconfiguration of the NHS in Wales. These plans will impact on the key actionswithin this document, specifically the organisations responsible for theirdelivery. Therefore, it should be understood that where the currentresponsibilities are transferred to another organisation, they will then becomeresponsible for delivery of the key actions. These standards will continue to beenforceable subject to any changes to the structure of the NHS in Wales.Monitoring the StandardsStandards will be monitored and audited annually as part of the MCNarrangements and will include comprehensive audit of training, practice andcompliance with pathways, protocols and agreed outcomes.Managed Clinical Networks (MCNs)Children and young people accessing specialist services in Wales inevitablyexperience different patterns of care depending on the geography andpopulation characteristics that impact on service provision in their locality.However it is crucial that although the pattern of care provided may differ, thestandard of care provided does not. Developing MCNs is a way of ensuringthat all Welsh children and young people receive equitable and high qualityspecialised services wherever they live in Wales.MCNs can be defined as: “Linked groups of health professionals from primary, secondary and/or specialist care, working in a co-ordinated manner, unconstrained by existing organisational boundaries, to ensure equitable provision of high quality and clinically effective services.” 15Through the formal establishment of MCNs, children and young people inWales requiring specialised healthcare will access services in accordancewith the following principle:Age appropriate, safe and effective (high quality) care delivered as locally as possible, rather than local care delivered as safely and effectively as possible.16An MCN is comprised of a number of disciplines working together in a co-ordinated, non-hierarchical manner, unconstrained by professional andorganisational boundaries. As a result of this collaborative mechanism, MCNsaim to facilitate and promote equitable, quality services through the provisionof seamless care.Many disciplines already work in an informal professional network. Howeverthis is not the case across all professions and health sectors. MCNs provide aco-ordinated and managed structure, integral to which are agreed protocols 8
  9. 9. and pathways of care, clinical audit, training and continuing professionaldevelopment.It should be acknowledged that a child or young person might need to accessmore than one of the CYPSSP speciality services. The MCN framework andstructures for each speciality should ensure flexibility to work together to meetthe needs of the child and the delivery of appropriate seamless care.Dental CareDental care is a service that has not been addressed separately. It isimportant to recognise that oral healthcare is a significant consideration for allchildren and young people and, because of their medical conditions, many ofthe children and young people requiring specialised healthcare services may:• be at higher risk of oral disease and oral complications• be at higher risk when treated for oral disease e.g. children with respiratory disorders requiring general anaesthetics and children who have had cardiac surgery• have particular problems that make the management of their dental treatment difficult, e.g. there may be associated learning disabilities.Prevention of oral and dental disease is therefore highly desirable for thisgroup of children and thus preventative oral healthcare advice should be partof every child’s overall care plan so that families and carers are well informedas to the specific risks for each child. Specific oral assessment and careshould also be available where appropriate.To facilitate this it is essential that the dental team is considered an integralpart of the multidisciplinary approach advocated throughout this project andthere should be a named dentist with specialised skills and knowledge in theoral healthcare of children e.g. a Specialist in Paediatric Dentistry linked toeach large District General Hospital to provide support and advice to thebroader teams and ensure referral of children for appropriate healthcare. 9
  10. 10. 10
  11. 11. Anaesthetic and Surgery Services for the Children and Young People of WalesThis document applies to all services providing surgical services for childrenand young people in Wales. There are thirteen standards within thedocument. Standards one to six are general and apply to all surgicalservices, whilst the remaining standards are service specific. All the servicespecific standards must be read in conjunction with standards 1-6, along withthe Universal Standards document 17 and National Service Framework forChildren, Young People and Maternity Services.71. Anaesthetic and General Surgery: Environment and Facilities2. Anaesthetic Care for Elective and Emergency Surgery3. Elective General Surgery4. Emergency General Surgery5. Specialist Paediatric Surgery6. Anaesthetic and Surgery: Evidence Base, Professional Education and Training7. Trauma and Orthopaedics8. Ear, Nose and Throat (ENT)9. Ophthalmology10. Plastic Surgery11. Burns12. Maxillofacial13. Cleft Lip and Palate 11
  12. 12. Paediatric Surgery Services for the Children and Young People of WalesA clear distinction must be made between specialist paediatric surgery,undertaken by a Specialist Paediatric General Surgeon (usually in a leadcentre setting) and General Paediatric Surgery (GPS). General PaediatricSurgery may be undertaken by General Surgeons with an interest (in theDGH setting) and also by Specialist Paediatric General Surgeons.18This document applies to all children and young people under 16 years of agerequiring surgical interventions. It is recognised that children with complexhealth needs and/or a learning disability may benefit from being cared for on ayoung person’s unit or a children’s ward during their transition period and thusthe standards will apply into early adulthood for this group. The standardscover all elements of the surgical pathway including:• Pre-surgery• Facilities / Resources• Intra-operative management• Recovery• Follow upEven though paediatric sedation is an area that is relevant to these standards,this has not been included, as guidance already exists. It is accepted that allrelevant support facilities such as staffed children’s wards, blood bank,laboratory services and pharmacy facilities are in place in any environmentwhere children’s surgery is undertaken 7 and these are therefore not repeatedhere.A key component of safe surgery for children and young people is safeanaesthetic care and this is also covered in this document.19As with other standards documents, there is a significant interface with otherspecialised services, in particular:• Oncology• Cardiac• Respiratory• Endocrinology• Neurosciences• Renal• Gastroenterology, Hepatology and Nutrition• Neonatal• Critical Care• Adult SurgeryStandards from the documents for these services may therefore apply here.Current key documents that have informed the development of this document.include: 12
  13. 13. • Royal College of Surgeons of England – Surgery for Children – Delivering a First Class Service18 (First Published 2000, revised 2007) • Royal College of Anaesthetists – Guidance on the provision of Paediatric Anaesthetic Services19 • Scottish Intercollegiate Guideline Network (SIGN)- Safe sedation of children undergoing diagnostic therapeutic procedures20 • Welsh Assembly Government- Caring for Critically Ill Children standards21 • British Association of Paediatric Surgeons – Paediatric Surgery: Standards of Care 22 • Department of Health - The acutely or critically sick or injured child in the District General Hospital. A team response23 • Joint Statement on General Paediatric Surgery Provision in District General Hospitals in Great Britain and Ireland24Provision of GPS in DGHs is currently the subject of active debate. TheAssociation of Paediatric Anaesthetists, the Association of Surgeons for GreatBritain and Ireland, the British Association of Paediatric Surgeons, the RoyalCollege of Paediatrics and Child Health and a Senate for Surgery for GreatBritain and Ireland have produced a joint document which outlined the currentstatus (August 2006). 24 The joint statement highlights the developing crisis,which requires urgent attention by healthcare commissioners. In Wales thereis only one centre for specialist paediatric surgery at the University Hospital ofWales, Cardiff (UHW); and historically surgeons with an interest in paediatricsurgery have undertaken a number of procedures in children in DGHs. Asexperienced surgeons retire, with a lack of individuals suitably trained ingeneral paediatric surgery, it may be that in several DGHs general paediatricsurgery may no longer be deemed possible because skills have been lost oreroded. The impact on families is that they may need to travel greaterdistances to obtain access to surgical care, particularly if the child is veryyoung. Increasing numbers of younger children requiring surgery (previouslyundertaken in DGHs) are being transferred to lead centre for both emergencyand elective surgery without adequate planning, management or resourcing.Thus there is a tension between trying to provide highest quality care and alsodelivering the care as close to home as possible.The issue not only involves surgery but also anaesthetic cover as similarproblems pertain.The joint statement has suggested models to increase the competence ofgeneral surgeons in the provision of GPS, but in the short term this isdependant on adequate numbers of competent general surgeons being willingand able to supervise trainees in the DGH setting, and the number ofspecialist paediatric general surgeons being willing and able to train generalsurgery trainees and consultants. It is uncertain whether there are sufficientnumbers of supervisors to ensure the success of this proposition. There is nodoubt that in order to maintain GPS competence in a DGH setting, managedlocal networks must be developed to enable anaesthetists and surgeonsbased in the lead centre to provide outreach clinics and operating theatre time 13
  14. 14. at DGH, and that suitable anaesthetic care is provided in larger DGHs toenable maintenance of services for other surgical sub-specialities, such asOphthalmology, ENT, Orthopaedics etc.A reasonable model needs to consider elective and emergency surgeryseparately.Elective General Paediatric SurgeryThe vast majority of elective paediatric surgery can be provided in a day casesetting.There are four possible models of care;1. Surgery delivered by a general surgeon with an interest in paediatric surgery2. Surgery delivered by a paediatric general surgeon with a joint appointment to the lead centre and the DGH3. Surgery delivered by a specialist paediatric general surgeon from the Lead Centre operating as outreach from the lead centre4. All surgery in children is performed within the regional centres.Emergency Paediatric SurgeryThere are three possible models of care;1. All surgery in children is sent to the lead centre - UHW for South Wales, Royal Liverpool Children’s Hospital (RLCH) for North Wales2. The majority of paediatric general surgery cases are undertaken in the DGH as long as this is safely and adequately resourced3. There are networks of DGHs (along with the lead centre) which undertake surgery on a rota basis. 14
  15. 15. Paediatric Surgery Service ModelsCurrent Service ModelSouth and Mid WalesChildren requiring specialised surgery, whether elective or emergency arereferred to the lead centre at UHW. There are five whole time equivalent(WTE) paediatric surgeons at this lead centre. General Paediatric Surgery isundertaken at most Trusts (including the lead centre) with varying frequency.North WalesChildren requiring specialised surgery, whether elective or emergency, arereferred to the lead centre at RLCH.General Paediatric Surgery is undertaken by one or two general surgeons ondedicated paediatric lists at three of the DGHs with varying frequency. EachDGH has a number of anaesthetists who anaesthetise children routinely (forGeneral Surgery, Ear, Nose and Throat, Ophthalmology and Trauma andOrthopaedic surgery, as well as for routine MRI scans or other investigations).One DGH has a visiting paediatric surgeon who undertakes one list per monthfor non-specialised surgery on day case patients.Each Trust holds one outreach clinic a month with the paediatric surgeon fromRLCH seeing new and follow-up patients. Paediatric Urology clinics are alsoheld bi-monthly at Wrexham. The local consultant paediatricians act as thelink for referrals to these clinics. 15
  16. 16. Proposed Service ModelThe most important consideration is that the service is of the highest qualityand safe for the child.We need to consider North and South Wales separately as the lead(specialist) centre for North Wales is RLCH, whereas for South Wales it isUHW.The report of the Children’s Surgical Forum, Surgery for Children: Delivering aFirst Class Service (July 2007) 18 states that most General Paediatric Surgerywill be performed in DGHs where the majority of consultant general surgeonscontribute to the emergency surgical service for children in their localpopulation. Children requiring emergency General Paediatric Surgery shouldonly be admitted to a hospital where there is inpatient support and appropriateanaesthetic cover.In DGHs that provide an elective general surgical service, sub-specialisationhas evolved with elective children’s surgery provided by one or two generalsurgeons performing at least one dedicated operating list every fortnight.The joint statement on the provision of General Paediatric Surgery proposed athree-centred model, forming a MCN 24 of care for general and specialistpaediatric surgery. • The small DGHs should be able to provide resuscitation and stabilisation of all infants and children with surgical conditions. It should be able to provide elective children’s surgery depending on the availability of suitably trained surgeons, anaesthetists and other resources. Normally, neonates and infants would not be offered elective surgery. Management of urgent and emergency surgical problems in young children (<5 years) will depend on the training and experience of the available surgeon and anaesthetist and may require transfer to an intermediate or lead centre. • An intermediate centre (large DGH or university hospital) should be large enough to employ specialist paediatric surgeons to undertake General Paediatric Surgery, or general surgeons with an interest in paediatric surgery who will provide emergency and elective General Paediatric Surgery including babies but not normally neonates. • A specialist or regional/lead centre should provide the full range of paediatric surgical care including neonatal, urological and cancer surgery, supported by neonatal and paediatric intensive care and full retrieval facilities. Specialist paediatric surgeons and anaesthetists provide this care. General paediatric surgeons from these centres may provide outreach clinics and operating lists in network hospitals. 18There will be specific instances where referral will be made to a supra-regional centre in England. 16
  17. 17. South and Mid WalesSpecialist Paediatric SurgeryAll specialist (elective and emergency) paediatric surgery is referred to thelead centre (UHW) and there should be development of outreach clinics forspecialist paediatric surgical patients in DGHs. South Wales is unique in theUK in not having specialist paediatric outreach clinics.General Paediatric Surgery i. Elective General Paediatric SurgeryWe advocate that the aforementioned 3-tier model could apply in SouthWales. This pre-supposes that there will be adequate training in paediatricsurgery for general surgeons who wish to develop an interest. It is importantthat both the general surgery faculty and specialist paediatric surgical centreprovide such training.Trusts in South Wales could be designated using the 3–tier model as below;• Newport - Level 2• Cardiff - Levels 2 and 3• Royal Glamorgan/Merthyr Tydfil - Level 2• Bridgend/ Swansea - Level 2• Carmarthen/Haverfordwest - Level1/2 /Aberystwyth ii. Emergency General Paediatric SurgeryThe provision of emergency general paediatric surgery in intimately linkedwith anaesthetic cover.It is not desirable that all paediatric emergency surgery comes to the leadcentre (option 1 as described on page 13)Regarding options 2 and 3 (page 13) it is not clear at the present time which isthe appropriate model.Each hospital within South Wales should be assessed to determine its role inthe overall provision of emergency general paediatric surgery. A MCN of carefor general and specialist paediatric surgery should evolve. Where possible, aminimum of two surgeons should provide general paediatric surgery in ahospital. This may mean performing general paediatric surgery on fewer siteswhere hospitals are geographically close together. 17
  18. 18. North WalesSpecialist Paediatric SurgeryRLCH will continue as the lead centre for all elective and emergencypaediatric surgery. (Proposed NHS Reconfiguration may influence futuremodel)General Paediatric SurgeryElective general paediatric surgery will continue in North Wales as agreed inthe Secondary Care Review ‘Designed for North Wales’25 consultation. Thesurgery will be undertaken by general surgeons, with appropriate expertiseand training, and in some centres by visiting paediatric general surgeons.Emergency general paediatric surgery will continue in all three DGHs basedon appropriate selection of patients in terms of age, clinical condition and co-morbidity and the availability of a suitable surgeon to undertake or directlysupervise the procedure.Any surgical procedure must be supported by appropriate and safeanaesthetic provision.When necessary, the decision to transfer a child to a lead centre will beundertaken jointly by consultants in paediatrics, surgery and anaesthesia.This pre-supposes that there will be adequate training in paediatric surgery forgeneral surgeons who wish to develop an interest. It is important that thegeneral surgery faculty provide such training alongside the specialistpaediatric surgical centre and local Trusts must consider succession planningfor these posts.In the future all DGHs should plan to have General Paediatric Surgeryundertaken in the local DGH by visiting specialist paediatric surgeons. Theadvantages of this arrangement are significant and include • Aspects of service improvement • CPD and training of local surgeons and anaesthetic staff • Enabling local surgeons to maintain their support and advice to local paediatricians in emergency care • Convenience for patients and parents, particularly considering the geography of North Wales 18
  19. 19. Paediatric Anaesthetic Services for the Children and Young People of WalesThe provision of a safe, high quality paediatric anaesthesia service underpinsthe delivery of all paediatric surgical specialties, together with acute painservices, airway management and the resuscitation and stabilisation ofacutely ill children in all hospitals in Wales. Medical paediatric specialities arealso dependant on paediatric anaesthesia services to facilitate investigationsincluding MRI, CT and endoscopy and for the medical management ofchildren receiving oncology treatment.All anaesthetists receive specific dedicated teaching in paediatric anaesthesiaas part of their training. Key competencies need to be achieved during thistraining. However, a minority of anaesthetists in DGHs regularly anaesthetisechildren and all DGH anaesthetists face a declining emergency paediatricworkload as a consequence of the shift of paediatric emergency work to thelead centre. While this shift is largely historical, there continues a steady drift,particularly of emergency work toward the lead centre, reflecting the decline innumbers of anaesthetists in DGHs for whom anaesthesia for children fallswithin their regular workload. Paradoxically it is incumbent on this sameworkforce to provide resuscitation and stabilisation service for acutely illchildren who require retrieval to paediatric intensive care in the lead centresfor North or South Wales.Extended training in paediatric anaesthesia, comprising six months in aspecialist paediatric unit together with advanced training in life support forchildren, is recommended for those who wish to take on the role of designatedor lead paediatric anaesthetist in a DGH. Consultants with a full timecommitment to paediatric anaesthesia will normally have completed twelvemonths of advanced paediatric anaesthesia training in a lead centre.While in the majority of Trusts in Wales elective paediatric surgery tends to beconcentrated amongst a smaller group of general anaesthetists, the majorityof Trusts do not have a separate paediatric anaesthesia on-call rota.However the expectation is that all consultant anaesthetists with a Certificateof Completion of Specialist Training (CCST) should be able to provideanaesthesia for elective and emergency surgery in children over the age of 5years, ASA categories 1 and 2.19With appropriate workforce planning it should be possible to ensure thatanaesthetists can operate within their sphere of professional competencies forelective surgery. However there may be circumstances in which theunexpected presentation of an emergency paediatric patient, with a surgicalor medical problem, will result in anaesthetists working beyond their range ofpractised competencies. This is more likely to occur within Trusts with noformal paediatric anaesthesia on-call rota. While it is the anaesthetist’s dutyto provide the best possible care in these circumstances it is also theemploying Trust’s duty to provide support to the anaesthetist.23 19
  20. 20. Paediatric Anaesthetic Service ModelsCurrent Service ModelSouth and Mid WalesChildren requiring specialised elective or emergency surgery are referred tothe lead centre at the University Hospital of Wales (UHW), Cardiff. There arecurrently seven WTE specialist paediatric anaesthetists at this lead centrewho provide a comprehensive anaesthesia service for these children. Anadditional small but significant cross border flow from neighbouring EnglishTrusts is also managed at UHW.General Paediatric Surgery is undertaken at most Trusts including the leadcentre where a group of specialist paediatric anaesthetists provideanaesthesia. A small amount of elective ENT, Trauma and Orthopaedics,Ophthalmic and Dental surgery undertaken at the lead centre hasanaesthesia provided by general anaesthetists together with some emergencyGeneral Paediatric Surgery in older children. Support for this activity isprovided by the specialist paediatric anaesthetists.Within the DGHs in South and Mid Wales paediatric anaesthesia provision forelective surgery across the range of specialties tends to be concentratedamongst small groups of general anaesthetists both on mixed and dedicatedpaediatric lists. The precise pattern of delivery in each Trust is dependant onlocal factors. The emergency workload however, tends to be spreadthroughout the consultant body with only one larger DGH at Swanseaproviding a separate paediatric anaesthesia on-call rota. Currently nooutreach service is provided from the lead centre.North WalesChildren requiring specialist elective or emergency surgery are referred to thelead centre at the Royal Liverpool Children’s Hospital (RLCH). Each Trusthas a number of anaesthetists who regularly anaesthetise children for electivepaediatric general surgery ENT, Ophthalmic, Trauma and Orthopaedics, MRIand other investigations. At Ysbyty Glan Clwyd anaesthesia is provided forthe visiting paediatric surgeon from RLCH on a monthly outreach list.Anaesthesia for emergency non-specialist paediatric surgery including traumaand ENT, is provided on the same basis as South Wales. Ysbyty Glan Clwydprovides a separate (incomplete) paediatric anaesthesia on-call rota. 20
  21. 21. Proposed Service ModelThe most important considerations are that the service is of the highest qualityand safe for the child. In all hospitals the emphasis should be on teamworking with the aim of providing the best package of care for the individualchild, whether this is at the DGH or through referral to the respective leadcentre.Whilst it is necessary to acknowledge the geographical referral pattern toseparate lead centres for South Wales (UHW) and for North Wales (RLCH),the establishment of a managed clinical network of care for general andspecialist paediatric surgery and other surgical specialties is fundamental tothe delivery of these aims. 1. DGHs should be able to provide resuscitation and stabilisation of all infants and children with surgical conditions. They should be able to provide elective children’s surgery depending on the availability of suitably trained surgeons, anaesthetists and a properly resourced paediatric anaesthesia team, including an acute pain team. 2. Normally, neonates and infants would not be offered elective surgery in the DGH. 3. Management of urgent and emergency surgical problems in children under the age of 5 years will depend on the training and experience of the available surgeon and anaesthetist and will probably only be possible when one of the cohort of anaesthetists who regularly anaesthetise children for elective surgery is on-call. The absence of one or more of this team will necessitate transfer to the lead centre. For certain surgical conditions where success or survival is time sensitive rapid transfer should be ensured with the best available team unless it is considered clinically inappropriate. Transfer will be to respective lead centre in North or South Wales. Transfer to an intermediate centre is not practical for comprehensive anaesthesia care. 4. The lead centre should provide the full range of paediatric general surgical care including neonatal, urological and cancer surgery, supported by neonatal and paediatric intensive care and full retrieval facilities. In the lead centres, care will be provided by specialist paediatric anaesthetists and specialist paediatric general surgeons with appropriate supporting infrastructure. 5. Designated or lead paediatric anaesthetists and those who regularly anaesthetise children in the DGHs should be funded to attend regular refresher training at the lead centre. 21
  22. 22. North WalesAnaesthetic services for children undergoing General Paediatric Surgery inDGHs in North Wales should be co-ordinated in each centre by a nominatedlead consultant anaesthetist.They will be responsible for ensuring that the standards for paediatricanaesthesia services in each centre meet nationally agreed standards in linewith the recommendations of the Royal Colleges. 18, 19They will develop local policies for the provision of anaesthesia for bothelective and emergency paediatric general surgery. Such policies will includeensuring the availability of an appropriately trained anaesthetist to oversee /undertake the anaesthetic and the provision of appropriately trained supportstaff / facilities.For emergency cases factors such as the child’s age, co-existing medicalproblems, nature of the surgery, severity of illness and need for critical caremay necessitate transfer to RLCH. The decision to transfer a child will bemade by consultant staff in anaesthesia, surgery and paediatrics inconsultation with the lead centre. 22
  23. 23. Standard 1: Anaesthetic and General Surgery - Environment andFacilitiesRationale: Children requiring anaesthetic care and/or surgery should be dealtwith in a child-friendly environment with appropriate facilities and equipmentKey Actions:Key Action Responsible Timescales organisationEnvironment1.1 Children and young people admitted to HCW Less than 1hospital for surgery are nursed in a child- LHBs yearfriendly environment. 7,17 Trusts1.2 Children and young people’s surgical HCW Less than 1care is undertaken in an environment with LHBs yearage appropriate facilities and equipment, Trustsboth surgical and anaesthetic, of thecorrect size and type for the child’s age.7,171.3 Age appropriate and suitable inpatient HCW 1-3 yearsfacilities for adolescents are available LHBsbased on choice. The needs of Trustsadolescents are recognised and met withinthe organisation. 71.4 Appropriate paediatric formularies are HCW Less than 1available in all areas where children and LHBs yearyoung people are cared for. 7 (KA 2.27),17 (KA 2.7) Trusts1.5 All intravenous fluids are administered HCW Less than 1through infusion pumps. LHBs year Trusts1.6 The anaesthetic room and theatre has HCW Less than 1appropriate thermostatic control with LHBs yearavailable temperature monitoring and Trustspatient warming devices.171.7 Paediatric resuscitation equipment for HCW Less than 1all age ranges is available in each area Trusts yearwhere children and young people are LHBscared for. 71.8 After surgery, children and young HCW Less than 1people are cared for in a dedicated, LHBs yearvisually distinct, child-friendly recovery Trustsenvironment, and by staff with training andexperience in caring for this age group. 17,211.9 Play specialists are employed in all HCW 4-10 yearsappropriate areas and all stages of this LHBs 23
  24. 24. service.7 (KA 7.16),17 (KA 2.8) TrustsExamples of some of the Healthcare Standards for Wales (HCS) thatmap across to the above standard are HCS 2, 4, 11, 19 and 22. 24
  25. 25. Standard 2: Anaesthetic Care for Elective and Emergency Surgery in AllSettingsRationale: All children and young people requiring surgery have anaestheticcare delivered by anaesthetists with training and expertise in the managementof anaesthesia in children. The delivery of this care is supported byappropriately trained multi-disciplinary teams, facilities and equipment and isapplicable to all locations where children and young people are managed.Key Actions:Key Action Responsible Timescale organisation2.1 Paediatric anaesthesia is always delivered HCW Less thanor supervised by an appropriately trained Trusts 1 yearconsultant.19,20 LHBs2.2 Individual Trusts develop their own Trusts 1-3 yearsguidelines based on the recommendations of LHBthe Royal College of Anaesthetists (RCA). 19 MCN2.3 There is a senior person within the Trust Trusts Less thanwho leads a children’s surgical services LHBs 1 yearcommittee. This committee must include thelead anaesthetist for children and youngpeople. (Appendix 3)2.4 Trusts direct succession planning and the Trusts Less thanspecial interests of the new appointees to the LHBs 1 yearanaesthetic team.2.5 All children and young people have an Trusts Less thananaesthetic assessment prior to surgery. LHBs 1 year2.6 All anaesthetic support staff involved in the Trusts 1-3 yearscare of children have received training in care LHBsof the anaesthetised child and young person.192.7 Anaesthetic assistants supporting Trusts 1-3 yearsanaesthesia for specialised emergency LHBssurgery in children under the age of 1 year are Lead CentrePLS or APLS trained. 192.8 Parents/carers are offered access to their Trusts Less thanchild in the anaesthetic room and recovery 1 yeararea if safe and appropriate.2.9 In the recovery area, following surgery, the Trusts 4 –10child is managed on a 1:1 basis by designated LHBs yearsstaff that regularly undertake paediatricresuscitation training. 18 25
  26. 26. 2.10 All recovery areas caring for children Trusts Less thanhave access to a Child Branch/RSCN at all LHBs 1 yeartimes. 172.11 Paediatric high dependency care is HCW 1-3 yearsimmediately available. Trusts LHBs2.12 There is a clearly defined protocol for HCW Less thanaccess to paediatric intensive care services. 17, Trusts 1 year18, 21 LHBs2.13 All DGHs have a nominated lead HCW Less thananaesthetist with responsibility for children’s Trusts 1 yearanaesthesia services. 192.14 In an acute surgical emergency that Trusts Less thanrequires a child to receive emergency 1 yearanaesthetic care, the most appropriateavailable anaesthetist will deliver theanaesthetic. 192.15 All emergency areas receiving children HCW 1-3 yearsand young people requiring emergency Trustssurgery have 24hr access to staff trained in LHBsAPLS. 18,192.16 An agreed care pathway is in place for HCW Less thanemergency transfer of care for children who Lead Centres 1 yearrequire level 2 (or above) care and will not be MCNretrieved by a specialist Paediatric Intensive TrustsCare Unit (PICU) team. Referring Trust staff Ambulancewill make arrangements for transfer from DGH Trustto another centre. 17, 182.17 Each Trust has an acute pain LHBs Less thanmanagement service for children and young Trusts 1 yearpeople.17Examples of some of the Healthcare Standards for Wales (HCS) thatmap across to the above standard are HCS 2,3,11,12,22,23,24 and 28. 26
  27. 27. Standard 3: Elective General Surgery for all age groups in All SettingsRationale: All children and young people requiring surgery have surgical caredelivered by surgeons with appropriate training and expertise in the surgicalmanagement of children. The delivery of this care is supported byappropriately trained multi-disciplinary teams, facilities and equipment and isapplicable to all locations where children and young people are managed.Key Actions:Key Action Responsible Timescale organisation3.1 All children and young people admitted as Trusts Less than 1an in-patient for general paediatric surgery are Lead Centres yearadmitted to a paediatric ward under the joint MCNcare of a surgeon and paediatrician. Each LHBsTrust has a defined protocol to address this.3.2 Each DGH has a multidisciplinary Trusts Less than 1committee comprising senior clinicians, lead LHBs yearsurgeon and Child Branch/RSCNs. This groupis responsible for improving and integratinglocal hospital services for children andaddressing issues of common concern. 183.3 Trusts direct succession planning and the Trusts Less than 1special interests of new appointees to the LHBs yearsurgical multi disciplinary team as part ofregional planning.3.4 In order for Trusts to provide elective Trusts 4-10 yearspaediatric general surgery it is essential that LHBsthere is a trained general paediatric surgeon.3.5 All general surgeons (appointed after LHBs Less than 12000) responsible for the care of children have Trusts yearreceived six months appropriate training inpaediatric surgery and are competent inmanaging unsupervised general paediatricsurgery. 183.6 On site paediatric services are available 24 Trusts Less than 1hours a day for consultation and assistance in LHBs yearthe care of any child who is a surgical in-patient. 18, 213.7 The staffing of every area involved in the LHBs 1-3 yearscare of children and young people requiring Trustssurgery includes access to Child 17, 18Branch/RSCNs nurses at all times. 27
  28. 28. 3.8 There is access to radiological services for Trusts Less than 1children throughout the MCN for investigations LHBs yearand their interpretation.18Pre-operative Management3.9 All children and young people have a Trusts Less than 1surgical, anaesthetic and, where appropriate, a LHBs yearmedical and therapy assessment prior tosurgery.3.10 A pre-operative familiarisation visit is Trusts Less than 1offered to prepare the child for admission to LHBs yearhospital.3.11 Pre-operative information is offered for Trusts Less than 1children and parents in a variety of formats, LHBs yearmedia and languages.73.12 Whenever possible children are operated Trusts Less than 1on as a day case. 18,22 LHBs year3.13 All children and young people with HCW Less than 1complex health needs are referred to the lead Trusts yearcentre. LHBs3.14 For children receiving day case surgery, HCW 1-3 yearsfacilities are available for immediate Trustsstabilisation prior to any required transfer. LHBs3.15 For children requiring in-patient HCW 1-3 yearstreatment, paediatric high dependency care is Trustsimmediately available. LHBs3.16 There is a clearly defined process for HCW Less thanaccess to paediatric intensive care services. 18 Trusts 1 year LHBsIntra-operative Management3.17 Paediatric resuscitation equipment for HCW Less than 1each age range is available in all areas where Trusts yearchildren and young people are cared for. 7, 17 (KA LHBs2.10)3.18 When children are operated on general Trusts Less than 1surgery lists, wherever possible, children are yearplaced at the beginning of the theatre list.Emergency3.19 In unexpected emergency events the Trusts Less than 1DGH based surgeon has a clearly defined yearprocess to consult with lead centre/ specialist.Examples of some of the Healthcare Standards for Wales (HCS) thatmap across to the above standard are HCS 2,3,4,6,11,12,19,21,22,23 and24. 28
  29. 29. Standard 4: Emergency General Surgery for All Age Groups in AllSettingsRationale: Emergency general surgical care for children and young people isdelivered by surgeons with appropriate training and expertise in the surgicalmanagement of children. The delivery of this care is supported byappropriately trained multi-disciplinary teams, facilities and equipment and isapplicable to all locations where children and young people are managed. Key Actions:Key Action Responsible Timescales organisation4.1 Each Trust has a plan to address out of Trusts 1-3 yearshours emergency general surgery that includes LHBsagreed written protocols for providingemergency surgery for children.184.2 In an immediate unexpected life-threatening Trusts Less than 1situation, emergency surgical care is provided LHBs yearby the most appropriate available surgeon.Examples of some of the Healthcare Standards for Wales (HCS) thatmap across to the above standard are HCS 3, 11 and 12. 29
  30. 30. Standard 5: Specialist Paediatric SurgeryRationale: All children and young people requiring specialised surgery aremanaged in the lead and specialist centres by appropriately trained surgicaland anaesthetic teams. The delivery of this care is supported byappropriately trained multi-disciplinary teams, facilities and equipment and isapplicable to all locations where children and young people are managed.Key Actions:Key Action Responsible Timescales organisation5.1 Children with a diagnosis that HCW Less than 1complies with the definitions listed by Trusts yearthe British Association of Paediatric LHBsSurgeons (BAPS) will undergosurgery in a specialist centre.(Appendix 4)5.2 Senior surgical, anaesthetic and HCW Less than 1paediatric DGH staff have 24 hours a Trusts yearday access to specialist paediatric LHBssurgical and anaesthetic advice fromthe lead centre.5.3 General paediatricians are able HCW Less than 1to directly refer patients to the lead Trusts yearcentre specialist surgical service. LHBs5.4 For every child requiring review HCW Less than 1by a specialist paediatric surgeon LHBs yearappropriate and timely plans are Trustsmade across the MCN in one of thefollowing ways;• Immediate in-patient transfer to a lead/ specialist centre• Out-patient appointment at lead/specialist centre• Out-patient appointment at local Specialist outreach clinics in the DGH.5.5 Waiting times for out-patient HCW 1-3 yearsappointments and surgery in children Trustsand young people comply with LHBsexisting Welsh Guidelines.265.6 Specialist paediatric surgery Lead Centres 1-3 yearsservices are provided by HCW 18appropriately trained specialists. 30
  31. 31. 5.7 The MCN has access to HCW 1-3 yearscomprehensive and appropriate LHBsinvestigations. Trusts5.8 Parents and patients have written HCW Less than 1instructions on how to access Trusts yearspecialist advice during and outside LHBsof routine working hours.Examples of some of the Healthcare Standards for Wales (HCS) thatmap across to the above standard are HCS 2, 6, 11, 12 and 22. 31
  32. 32. Standard 6: Anaesthetics and General Surgery – Evidence BaseProfessional Education and TrainingRationale: All members of the MCN are trained to the required standard todeliver a high quality, evidence based service. The delivery of this care issupported by appropriately trained multi-disciplinary teams, facilities andequipment and is applicable to all locations where children and young peopleare managed.Key Actions:Key Action Responsible Timescales organisation6.1 In accordance with RCA guidelines all HCW Less than 1consultant anaesthetists responsible for the Trusts yearcare of children maintain their competence LHBsthrough regular exposure, continuing education MCNand professional development (CEPD) and/orrefresher courses, including the opportunity forsecondment to specialist centres. 196.2 All general surgeons responsible for the HCW Less than 1care of children maintain their competence Trusts yearthrough regular exposure, continuing LHBsprofessional development (CPD) and/orrefresher courses, including the opportunity forsecondment to specialist centres and specialistpaediatric surgery. 17, 186.3 General surgeons responsible for LHBs 4-10 yearsperforming surgery on children and young Trustspeople are trained in Paediatric Life Support(PLS) or its equivalent. 186.4 General surgeons receive PLS training in Trusts Less than 1their six-month paediatric experience during Deanery yeartheir training programme. 186.5 Joint arrangements are in place for Trusts 1-3 yearssurgeons and anaesthetists from DGHs to LHBsundertake regular supernumerary attachmentsto paediatric lists, or secondments to the leadcentre in order to maintain their paediatricknowledge and skills. 186.6 All members of the multi-disciplinary team Trusts 1-3 yearshave dedicated time and funding to access HCWspeciality training and other professionalactivities to maintain their knowledge and skillsthrough CPD. 176.7 All MDT members regularly undertake HCW Less than 1paediatric resuscitation training. Lead Centres year 32
  33. 33. Trusts MCN6.8 External peer review is part of the annual HCW Less than 1audit programme. 17 Lead Centres year LHBs Trusts MCN6.9 Annual mortality data is published by each HCW Less than 1lead centre.21,17 Lead Centres year6.10 Care pathways are in place for surgical HCW 1-3 yearsinterventions at DGHs and lead centres for Trustselective and emergency surgery. 17 (KA 5.6) LHBsExamples of some of the Healthcare Standards for Wales (HCS) thatmap across to the above standard are HCS 11, 22, 24 and 28. 33
  34. 34. Paediatric Trauma and Orthopaedic Services for the Children and YoungPeople of WalesThe delivery of orthopaedic care has changed over recent years with anincreasing trend to sub-specialisation. The number of children requiringtreatment has increased by more than 40% between 1993 and 2005;however, the number of consultants providing care for children has notchanged.All orthopaedic consultants receive a Certificate of Completed Training inTrauma and Orthopaedics, which includes the management of commonpaediatric trauma and common paediatric orthopaedic conditions. In additiona specialist paediatric orthopaedic surgeon will normally have undergoneadditional specialist training as a registrar in paediatric orthopaedic surgeryand will be able to recognise and manage some, but not necessarily allorthopaedic conditions. It is expected that a specialist paediatric orthopaedicsurgeon will undertake regular paediatric clinics and theatre sessions, withappropriate support from paediatricians, anaesthetists, nurses,physiotherapists and other health professionals. Furthermore, the specialistpaediatric orthopaedic surgeon should be a member of the British Society ofChildren’s Orthopaedic Surgery (BSCOS), which is affiliated to the BritishOrthopaedic Association (BOA).A lead paediatric orthopaedic centre is defined as a centre where paediatricorthopaedic surgery is undertaken by a team of two or more specialistpaediatric orthopaedic consultants. The lead centre will be expected to dealwith a wider range of more complicated paediatric orthopaedic conditions andmust have appropriate support from a multidisciplinary team.Paediatric orthopaedic surgery services that should be regarded asspecialised are indicated in Appendix Five. The more common and lesscomplex conditions can be managed in a district general hospital (DGH) by ageneral orthopaedic surgeon.There is a lack of appropriately trained specialist paediatric orthopaedicconsultant surgeons that has resulted in long waiting times for treatment. Anumber of the surgical conditions are ‘time critical’ and have to be treatedquickly to achieve a satisfactory result.No specialist service for children and young people stands alone and thetrauma and orthopaedic service needs to interface with other specialisedservices in particular: • Neurosciences • Oncology • Paediatric Critical Care • General Surgery 34
  35. 35. The current key document that has informed the development of the traumaand orthopaedic standards is Children’s Orthopaedics and Fracture Care(Blue Book), 2006, British Orthopaedic Association. 27 35
  36. 36. Trauma and Orthopaedic Service ModelCurrent service modelsSouth and Mid WalesIn South Wales there are three hospitals with dedicated paediatricorthopaedic services. These are; • University Hospital of Wales (UHW) which has three part-time paediatric specialist orthopaedic surgeons and four spinal surgeons • Morriston Hospital which has two part-time paediatric specialist orthopaedic surgeons • Royal Gwent Hospital (RGH) which has one part-time paediatric specialist orthopaedic surgeon.These centres provide trauma and elective services for their localcommunities as well as the specialist paediatric services for the surroundingareas and South and Mid Wales.Straightforward trauma and non-specialised elective surgery on children andyoung people is undertaken in most of the other Trusts. Children and youngpeople with complicated trauma or multiple injuries are usually referred to thepaediatric orthopaedic surgeons at UHW or Bristol Royal Hospital for Children(BRHC) except where the specialist services of maxillofacial and/or plasticsurgery is required in which they would be referred to Morriston Hospital.More complex elective conditions are referred for diagnosis and treatment toUHW, Morriston Hospital or RGH. Gwent has a strong relationship with BRHCand has been referring children requiring specialised orthopaedic surgery(except spinal surgery) to BRHC for over fifteen years.Children and young people from across South Wales with musculo-skeletaltumours are referred to Birmingham Children’s Hospital (BCH). There areoccasional specific cases that are referred from UHW and Morriston Hospitaldirectly to BRHC.Children with cerebral palsy requiring gait analysis may also be referred to theRobert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry (RJAH).Each of the specialist centres provide out-patient clinic services to specialschools and also provide clinics for limb length discrepancy, clubfoot, hipdysplasia and muscle clinics.The specialist centres at UHW and Morriston Hospital provide surgery forcerebral palsy, developmental dysplasia of the hip from birth to adulthood,clubfoot treatment with the Ponseti method (and by standard operativetechniques), limb length discrepancy and deformity work including Ilizarovmethods. In addition, most neuromuscular conditions are managed at UHWand Morriston Hospital. 36
  37. 37. Specialist spinal surgery for children and young people takes place at UHWwhere there are four spinal surgeons with an interest in paediatricorthopaedics. They deal with paediatric spinal trauma and spinal deformity forSouth Wales and much of Mid Wales. There are two specialist scoliosis clinicsper month in UHW held in Cardiff and Vale Orthopaedic Clinic (CAVOC) atLlandough Hospital, and one outreach clinic at Morriston Hospital. There arebetween 1-2 scoliosis theatre lists per week (60 cases per year) and onenurse with a specialist interest in the management of children and youngpeople with scoliosis.In Mid Wales virtually no elective surgery is carried out at Bronglais Hospital,Aberystwyth apart from treatment for minor paediatric injuries and conditions.Therapists form part of the multidisciplinary teams within the acute andcommunity settings. Therapy services are provided in a variety of settingsboth in hospital and in the community; however, there are considerablevariations across trusts in terms of the organisation and expertise available.Local physiotherapy developments exist, although these services are limitedexamples of good practice in South Wales include: • Ponseti treatment • Normal variants of gait • Pre-operative assessment for elective spinal and orthopaedic surgery in the acute sector • Selection for Botulinum and specialist follow-up.Overall it is recognised that the South Wales services are under resourced,hence the dependency, particularly in Gwent and South Powys on thespecialist services of BHRC.North WalesIn North Wales and Powys, the majority of specialist care is provided by RJAHalthough some children and young people are referred for care to RLCHwhere there is access to paediatric intensive care.The RJAH offers a secondary and specialist paediatric orthopaedic service tothe children of North Wales. The paediatric orthopaedic team consists of twofull time, two part time and two visiting specialist orthopaedic consultantsurgeons. There are two full time consultant paediatricians, with visitingpaediatricians for specialist clinics that include skeletal dysplasia, clubfoot,limb deficiency and muscle clinics. In addition, the team works with spinal,upper limb, sports and tumour surgeons to treat children. There is a gaitlaboratory and orthotic department on site, along with a basic scienceresearch unit. The orthopaedic consultants provide clinic services to Northand Mid Wales, including the special schools.The department deals with a variety of paediatric orthopaedic conditions asdetailed below. 37
  38. 38. The management of the child with; • Cerebral Palsy including Botulinum toxin, multilevel surgery and rehabilitation, selective dorsal rhizotomy • Spasticity management • Intrathecal Baclofen • Developmental dysplasia of the hip from birth to adulthood • Talipes by Ponseti method • Limb deformity / leg length discrepancy work including Ilizarov method • Neuromuscular conditions e.g. Duchenne Muscular Dystrophy (DMD), myopathies, Hereditary Motor Sensory Neuropathies (HMSN) • Secondary trauma workThere is a weekly outreach paediatric orthopaedic clinic at Ysbyty Glan Clwydand Wrexham Maelor Hospital; and elective orthopaedic surgery is performedat Ysbyty Glan Clwyd Hospital on an adhoc basis.Children and young people from Bangor are generally referred to RJAHexcept for the problem of Talipes, which is referred to RLCH. For traumacases, children aged less than 6 months from Ysbyty Gwynedd, Bangor aregenerally referred to RLCH, as they will require the services of a paediatricanaesthetist. 38
  39. 39. Proposed Service ModelsSouth and Mid WalesSpecialist paediatric orthopaedic services to continue at UHW, MorristonHospital and RGH. However, there is need for further specialist serviceprovision and in South Wales in particular to develop additional services formore complex conditions in conjunction with the other related specialistservices e.g. neurosciences, oncology, paediatric intensive care and generalsurgery. Detailed consideration is required as to where these are located.Until such services are fully established the provision of some services fromBRHC remains important.There needs to be an increase in WTEs in all South Wales centres, with eachcentre taking a lead role in a specific supra-specialist area.Outreach services need to be further developed from specialist centres toDGHs, and each Trust will identify a local lead orthopaedic surgeon with aninterest in children and young people who will be responsible for reviewingchildren and young people with complex trauma and orthopaedic conditions.This person will act as the liaison into the MCN, and locally ensure standardsfor all paediatric orthopaedic conditions are delivered. There will be a closeinterface with the paediatric neurology and neurodisablity service, includingjoint clinics, as many children need combined management.Further development of therapy services is also required, includingestablishing the role of extended scope physiotherapists (Appendix Six).Additionally a specialist nurse in paediatric trauma and orthopaedic care anda specialist nurse in the management of spinal conditions are required in eachof the specialist centres as part of the outreach service.North WalesThere will continue to be two specialist centres providing care for children andyoung people from North Wales, the RLCH and RJAH. There will need to bean increase of one WTE paediatric orthopaedic surgeon at RLCH to supportthis. The two specialist centres will provide outreach clinics to Trusts in NorthWales. 39
  40. 40. Standard 7: Trauma and OrthopaedicsRationale: All children and young people requiring management of theirtrauma and orthopaedic condition have access to an orthopaedic surgeonwith appropriate training and expertise in the trauma and orthopaedicmanagement of children. The delivery of this care is supported byappropriately trained multidisciplinary teams, facilities and equipment and isapplicable to all locations where children and young people are managed.Key Actions:Key Action Responsible Timescale organisation7.1 The treatment of children with conditions HCW 1-3 yearson the paediatric orthopaedic surgery list LHBs(Appendix 6) is managed directly by, or in Trustsconsultation with a specialised paediatricorthopaedic surgeon. 277.2 All children and young people admitted as HCW 1-3 yearsan in-patient for trauma/orthopaedic care are LHBsadmitted to a paediatric ward under the joint Trustscare of a trauma/orthopaedic surgeon andpaediatrician. Each Trust has a definedprotocol to address this.7.3 Children and young people requiring HCW Less than 1emergency trauma and orthopaedic care are Trusts yearonly admitted to hospitals where there is also a LHBspaediatric service.7.4 Each Trust has a nominated lead Trusts Less than 1orthopaedic surgeon with responsibility for LHBs yearpaediatric trauma and orthopaedic serviceswho is a member of the Trust paediatricsurgical services committee.7.5 On site paediatric services are available 24 Trusts Less than 1hours a day for consultation and assistance in LHBs yearthe care of any inpatient child requiring traumaand orthopaedic surgical care.17, 217.6 Child Branch/RSCN nurses who care for LHBs 1-3 yearschildren and young people requiring trauma Trustsand orthopaedic management haveundertaken additional trauma/orthopaedictraining. Each Trust has a minimum of twosuch nurses. 40
  41. 41. 7.7 Guidelines for the management, treatment Trusts Less than 1and onward referral of fractures and soft tissue LHBs yearinjuries in children and young people are inplace in accident and emergency departments(A&E) and minor injury units.7.8 Wherever possible children are placed at Trusts Less than 1the beginning of a theatre list. year7.9 In their training programme, during their Trusts Less than 1six-month paediatric experience, orthopaedic yearsurgeons receive PLS training.7.10 At DGH and community settings children HCW 1-3 yearsand young people are cared for by LHBsappropriately trained MDTs with access to Trustsspecialist advice from the lead centre.(Appendix 7)7.11 Trusts maintain succession planning for Trusts Less than 1consultant orthopaedic surgeons and other LHBs yearmembers of the MDT to ensure that asecondary care children’s orthopaedic serviceis available.7.12 Training is provided to all key workers in HCW Less than 1the psychosocial care of children, young Lead Centres yearpeople and their families. LHBs7.13 Trusts employ extended scope LHBs 1-3 yearspractitioner physiotherapists (ESP) with Trustsappropriate training and expertise to runphysiotherapy-led clinics. (Appendix 5) 287.14 Clinical guidelines are available for each Trusts 1-3 yearsstep of the pathway. Multidisciplinary clinical MCNpathways are in place for the management ofchildren and young people requiring traumaand orthopaedic services including: - pre-assessment clinic - in-patient care - discharge planning - community care.7.15 There is access to paediatric orthotic HCW 1 – 3 yearsservices that meet appropriate standards, Trustsacross the MCN. MCN7.16 There is a care pathway that ensures Trusts Less than 1urgent access to an orthopaedic clinic for LHBs yearsuspected developmental dysplasia of the hip MCN(DDH). 41
  42. 42. 7.17 A paediatric physiotherapist is present at Trusts Less than 1paediatric orthotic clinics. LHBs year7.18 Two paediatric surgeons are present Lead Centres Less than 1when a child or young person undergoes HCW yearscoliosis surgery. 297.19 Telemedicine facilities for transfer of bone WAG 4-10 yearsimaging is available at lead centres and all HCWDGHs. 307.20 Access to gait analysis laboratories is HCW 1-3 yearsavailable by specialist paediatric orthopaedic Lead Centrereferral to lead/specialist centres.7.21 Children and young people are seen in a Trusts Less than 1visually distinct, child-friendly environment in LHBs yearthe out-patient department.77.22 Children’s trauma, orthopaedic and Lead Centres Less than 1scoliosis clinics at lead centres are staffed by HCW yearChild Branch/RSCN nurses with relevant LHBstrauma and orthopaedic experience andphysiotherapists with paediatric experience.7.23 Each lead centre provides multi- HCW 1-3 yearsdisciplinary outreach clinics across the LHBsnetwork. This may include clinics held in Trustsspecial schools. MCN7.24 Where long term follow- up is necessary HCW 1- 3 yearsfor children with orthopaedic conditions, LHBsaccess to paediatric physiotherapy/ paediatric Trustsnurse-led follow up is available whereappropriate.7.25 Correspondence is copied to all members LHBs Less than 1of the MDT involved in the care of children and Trusts yearyoung people.Examples of some of the Healthcare Standards for Wales (HCS) thatmap across to the above standard are HCS 2,4,11,12,22,24 and 28. 42
  43. 43. Paediatric Ear, Nose and Throat (ENT) Services for the Children and Young People of WalesPaediatric ENT services manage diseases that affect the upper airway, nosethroat and ears. ENT problems in children are very common and areestimated to account for 38% of General Practitioner (GP) consultations. ENTsurgery is the single largest contributor to the total paediatric surgicalworkload in Wales; despite this the speciality is often perceived as a minorsurgical speciality in the context of paediatric services as a whole.Services for children have always formed a significant part of the serviceprovided by ENT surgeons and have traditionally been managed as part ofthe adult service, although usually the children and young people are caredfor on a paediatric surgical ward. The management of specialist ENTconditions (Appendix Eight) should be concentrated at specialist centres inpartnership with colleagues from DGHs.Local emergency paediatric ENT services should be maintained through thedevelopment of a professional MCN designed to maintain skills, especiallythose relating to emergency airway surgery. No unit can devolve itsimmediate responsibility for dealing with an airway emergency to the leadcentre. A fundamental principle in the care pathway is that the local teamdeals with any critically ill child. Once the airway is secured retrieval by thelead centre PICU team can be arranged. The PICU retrieval team is not an‘airway team’, although they can safely manage the transfer of a child who isintubated or who has a tracheostomy.A number of support services are necessary and form an important part of theclinical team delivering paediatric ENT services (Appendix 8). These shouldbe available wherever paediatric ENT services are being provided in order tomaintain a quality service for children in Wales.As with other services, there is a significant interface with other specialisedservices, in particular: • Critical Care • Neonatal Surgery and Anaesthetics • Paediatric Surgery and Anaesthetics • Neurosurgery • Oncology • Respiratory • Burns • Plastic Surgery • Maxillofacial • OphthalmologyThe standards documents from those services may therefore apply here. 43
  44. 44. The evidence base for the ENT service remains underdeveloped; however,key documents have helped inform the development of these standards,including: • Newborn Hearing Screening Wales Quality Manual (2006) 31 • Cochlear implants for children and young people (2005) 32 • Working Together Speech and Language Services for Children and Young People (2003) 33 • Guidelines for the Early Identification and the Audiological Management of Children with Hearing Loss (2000) 34 • Auditory, Balance and Communication Disorders (2002) 35Audiology is a speciality concerned with the investigation, diagnosis andmanagement of auditory, balance and communication disorders. A largenumber of children with glue ear would not need to be referred to an ENTsurgeon and therefore they are not discussed in this document. 44
  45. 45. Ear, Nose and Throat (ENT) Service ModelCurrent Service ModelsSouth and Mid WalesThe lead centre for specialist ENT surgery is at the University Hospital forWales, Cardiff (UHW). Children and young people requiring hospital care aremanaged by ENT surgeons at DGHs and referred on to the specialist centreat UHW if necessary. Conditions that require specialised care for complexENT disorders (Appendix Eight) are seen at UHW. Elements of shared careare established across the network and on occasions specialised care isdelivered at the DGH with appropriate support dependent on training andexperience. On the rare occasions that highly specialised care is required theDGH (after discussion with the lead centre) will refer to either Great OrmondStreet Hospital (GOSH) or Birmingham Children’s Hospital (BCH).North WalesThe majority of children and young people requiring routine ENT surgery aremanaged by the general ENT services at the DGHs. Specialised care isprovided at the lead centre at RLCH. Children and young people requiringhighly specialised care are referred via the lead centre or the DGH (inconjunction with the lead centre) to the Queen’s Medical Centre, NottinghamChildren’s Hospital (QMC).Proposed Service ModelsSouth and Mid WalesContinue current service model, with all elements of shared care fullycommissioned.North WalesContinue current service model, with all elements of shared care fullycommissioned. 45
  46. 46. Standard 8: Ear Nose and Throat (ENT)Rationale: All children and young people requiring management of their ENTcondition have access to an ENT surgeon with appropriate training andexpertise. The delivery of this care is supported by appropriately trainedmultidisciplinary teams, facilities and equipment and is applicable to alllocations where children and young people are managed.Key Actions:Key Action Responsible Timescales organisation8.1 All children and young people admitted as Trusts Less than 1an inpatient for an ENT surgical procedure are LHBs yearadmitted to a paediatric ward under the jointcare of an ENT surgeon and paediatrician.Each Trust has a defined protocol to addressthis.8.2 On site paediatric services are available 24 Trusts Less than 1hours a day for consultation and assistance in LHBs yearthe care of any inpatient child requiring ENTsurgical care.188.3 Each unit undertaking ENT surgery on Trusts Less than 1children has a lead ENT surgeon and lead LHBs yearChild Branch/RSCN ENT nurse.8.4 Each unit undertaking ENT surgery on Trusts 1-3 yearschildren has Child Branch/RSCN nurses with LHBsexpertise in the management of children andyoung people with ENT conditions includingtracheostomy management.8.5 An agreed care pathway is in place for HCW Less thanemergency transfer of care for children who Lead Centres 1 yearrequire level 2 (or above) care and will not be MCNretrieved by a specialist PICU team. Referring TrustsTrust staff will make arrangements for transfer Ambulancefrom DGH to another centre. Trust8.6 All consultant ENT surgeons responsible HCW Less than 1for the care of children maintain their Trusts yearcompetence through regular exposure, LHBscontinuing education and professionaldevelopment (CEPD) and/or refreshercourses, including the opportunity forsecondment to specialist centres. 46
  47. 47. 8.7 Each Trust has a nominated lead ENT Trusts Less than 1surgeon with responsibility for paediatric ENT LHBs yearservices who is a member of the Trustpaediatric surgical services committee.8.8 On the occasions when children are Trusts Less than 1operated on general adult surgery lists, yearwherever possible children are placed at thebeginning of the theatre list.8.9 Following surgery, children and young HCW Less than 1people are cared for in a dedicated, visually LHBs yeardistinct, child-friendly recovery environment Trustsand by staff with training and experience incaring for this age group. 178.10 Children and young people are seen in a Trusts Less than 1visually distinct, child-friendly environment in LHBs yearthe out-patient department.78.11 Play specialists are available in all areas HCW 1-3 yearsand all stages of this service. 7 (KA 7.16),17 (KA 2.8) LHBs Trusts8.12 Each DGH unit has access to support Trusts Less than 1from a multidisciplinary paediatric hearing LHBs yearteam. (Appendix 8)8.13 There is an appropriate MDT (Appendix Lead Centres Less than 18) available for children and young people who HCW yearreceive cochlear implants/bone anchoredhearing aids.8.14 All children and young people who have a Trusts Less than 1tracheostomy are supported by a MDT.7 Lead Centres year(Appendix 8) LHBs8.15 Designated time is available for all Lead Centres Less than 1members of MDT to offer outreach and shared HCW yearcare where necessary.8.16 A care pathway is in place for the care of Trusts Less thanchildren and young people with a MCN 1 yeartracheostomy.8.17 Respite care is available for children and LHBs 1-3 yearsyoung people with a tracheostomy. 7 Trusts8.18 The care of children requiring an Trusts Less than 1emergency tracheostomy at the DGH must be yeardiscussed (consultant to consultant) with PICUand an ENT surgeon at the lead centre,pending retrieval and transfer. 47
  48. 48. 8.19 A care pathway is in place for the joint Trusts Less than 1surgical and anaesthetic management of LHBs yearpaediatric airway emergencies.8.20 All professionals caring for children with Trusts Less than 1ENT health needs across the MCN are trained MCN yearand assessed in the management of paediatricairway emergencies. This is a high priority forCPD.8.21 Appropriate age-specific equipment is Trusts Less than 1available for emergency airway management. yearAll relevant staff undergo regular training inemergency airway management. KA 8.208.22 Referral to an appropriately trained and Trusts 1-3 yearsexperienced speech and language therapist is LHBsavailable to children with ENT disorders that HCWare likely to impact on communication and/orfeeding.8.23 Children with acute dysphagia and/or Trusts 1-3 yearscommunication problems are seen urgently by LHBshospital and/or community speech andlanguage services. Children requiring routinespeech and language care are seen within 26weeks total wait by December 2009. 36Examples of some of the Healthcare Standards for Wales (HCS) thatmap across to the above standard are HCS 2,3,4,11,12,19,22,24 and 28. 48
  49. 49. Paediatric Ophthalmology Services for the Children and Young Peopleof WalesOphthalmic health in children encompasses all the sub-specialities ofophthalmology, which include diseases of the lids and surrounding structuresto disorders of the retina, optic nerve and disorders of the nervous system,which affect the visual and ocular motor system.Development of important visual functions occur rapidly after birth, thesensitive period, and the visual system is susceptible to ocular and braindisorders causing abnormal visual development. However, the visual systemhas an inherent plasticity during the sensitive period and most disorders areamenable to treatment if detected early enough.A paediatric Ophthalmologist, a medical doctor who sub specialises inophthalmology and paediatric ophthalmology, is trained in the diagnosis andmanagement of disorders which affect the eye and its surrounding structures,namely the orbit, brain and facial structures.In addition the eye and visual system may be affected by a number ofsystemic diseases where there may be a significant interface with otherpaediatric specialities such as neurology, neonatology, endocrinology,metabolic diseases, genetics and community paediatrics. Certain ophthalmicdisorders affecting adults are rare in children and will require the expertise ofother sub specialities in ophthalmology (e.g. vitreo-retinal and orbital surgery).In these cases it is imperative that, although the numbers referred may besmall, management of these paediatric ophthalmic disorders is child centred,and is viewed in the broader context of general health and development of thechild.The ophthalmic health service is also supported by Orthoptists andOptometrists, who are paramedical health professionals.An Orthoptist works closely with paediatric Ophthalmologists in the provisionof primary and secondary care. An Orthoptist is trained in the diagnosis andmanagement of ocular motility disorders and amblyopia. They often providethe initial contact, assessing the child’s vision and ocular motility when theyare referred to the hospital services. In addition they are also involved inscreening programs for visual disorders.An Optometrist is a health professional trained to detect disorders that affectthe eye and visual system and correct refractive errors with spectacles. AnOptometrist plays an important role in supporting the hospital eye serviceswith the provision of spectacles, contact lens and low visual aids.Paediatric ophthalmology requires the support of a number of otherspecialised services, which include: • Ocular electrophysiology • Paediatric anaesthesia 49
  50. 50. • Neonatology • Paediatric critical care/HDU • General and community paediatrics • Oncology • Radiology / Paediatric Neuro-imaging • Neurology • Ear, Nose and Throat • Maxillofacial • GeneticsThe standards from these specialised services will therefore also apply.This section represents minimum standards in relation to health services forchildren with ophthalmic disorders and/or visual impairment. The RoyalCollege of Ophthalmologists document Ophthalmic Services for Children.37was used to inform the development of these standards and key actions.The provision of ophthalmic health services occurs at three levels, whichinclude: 1) Primary prevention: preventing visual impairment through screening for disorders that affect the visual system, e.g. retinopathy of prematurity, congenital/ developmental cataract, retinoblastoma, juvenile idiopathic arthritis 2) Secondary prevention: to reduce the impact of established disease by early detection, e.g. congenital cataract, amblyopia, strabismus and refractive disorders 3) Tertiary prevention: maximising the functional vision for untreatable diseases by the provision of visual aidsA robust primary screening programme enabling prompt diagnosis isextremely important to ensure consistency, minimise the impact of falsepositive results and the provision of a quality service to the child, youngperson and their family. To deliver high quality services it is essential toaddress the specific needs of children with eye disease. Visual loss inchildhood can significantly impair the progress in physical, emotional andsocial development. The successful management of children with ophthalmicconditions involves an effective partnership between medical and non-medicalhealth professionals and the parents or guardians of the child.37A number of children with severe visual impairment or blindness haveadditional illnesses or other serious sensory, motor or learning impairments.This is nowhere more true than in cortical visual impairment, the mostcommon cause of visual impairment in children. Therefore, it is essential thatwhere a number of health professionals are involved with a child’s eye careeffective communication should exist between them and the parents orguardians of the child. Because a child’s visual impairment impactssignificantly on their educational achievements, a co-ordinatedmultidisciplinary team approach through the use of key worker schemes is 50
  51. 51. advocated.7, 38 A list of ophthalmic conditions can be found in Appendix Nine.Where children with these conditions are treated, will depend on the level ofanaesthetic service available. 51
  52. 52. Paediatric Ophthalmology Service ModelsCurrent Service ModelSouth and Mid WalesCurrently there are five ophthalmologists nominated as the leads forpaediatric ophthalmology who are located individually at the Royal GwentHospital (RGH), University Hospital of Wales (UHW) ,Royal GlamorganHospital, Princess of Wales Hospital (POW) and Singleton Hospital whoprovide services as listed in Appendix Nine. Other hospitals have anophthalmologist who leads paediatric eye services are at West Wales GeneralHospital and Bronglais General Hospital.UHW and Singleton hospitals currently provide specialist services that requirepaediatric anaesthesia for children below the age of one. Some hospitals willrefer children below the age of three years to the specialist centres. Leadcentres (UHW and Singleton) provide specialist treatment for retinopathy ofprematurity, congenital cataracts and glaucoma (UHW).Where necessary, supra-regional referral will be made to the BirminghamChildren’s Hospital (BCH), Great Ormond Street Hospital (GOSH), RoyalLiverpool Children’s Hospital (RLCH), Moorfields Eye Hospital and JohnRadcliffe Hospital.North WalesNorth Wales currently has three consultant ophthalmologists nominated asthe leads for paediatric ophthalmology who are located at Ysbyty Gwynedd,Wrexham Maelor Hospital and HM Stanley Hospital.For the majority of treatment and conditions in Appendix 9 referral is usuallymade to one of the three Consultant Paediatric Ophthalmologists at RLCH. Insome instances, e.g. Retinoblastoma, direct referral is made to BCH butfollow-up care is then shared with RLCH. Retinopathy of Prematurity (ROP)screening is provided locally, however treatment is usually provided by theUniversity Hospital of Aintree.Retinal detachment and congenital cataracts in older children may be dealtwith in the DGHs, though younger children are referred to RLCH. 52
  53. 53. Proposed Service ModelsSouth and Mid WalesTo continue current service model with all elements of shared care fullycommissioned, and with access to newly developing supra-regional centresas required.North WalesTo continue current service model with all elements of shared care fullycommissioned. 53

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