All Wales Neurosciences Standards for Children and Young People s Specialised Healthcare Services

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1 All Wales Neurosciences Standards for Children and Young People s Specialised Healthcare Services

2 CMK E ISBN: Crown Copyright July 2009

3 Foreword It gives me great pleasure to introduce the latest in this series of documents which set out to address the specific needs of children and young people accessing specialised healthcare services in Wales, and will form the foundation for the establishment of managed clinical networks to deliver these services. The development of this document is thanks to an enormous amount of work by clinicians, service providers, healthcare professionals, voluntary organisations, parents and our children and young people and I would like to express my thanks to all those involved. The Welsh Assembly Government continues to believe that the best investment we can make in the future is ensuring high quality and equitable services are provided for our children and young people. These documents will build on the important improvements already underway following the publication of the Children s National Service Framework in 2005 in delivering the best services for the children and young people of Wales. Edwina Hart AM OStJ MBE Minister for Health and Social Services 1

4 2

5 Children and Young People s Specialised Services Introduction to the Project In 2002, the Specialised Health Service Commission for Wales undertook a review of specialised healthcare services for the children and young people of Wales, which identified that these services were delivered in an ad hoc and fragmented way. 1, 2 Following this review, the Minister for Health and Social Services announced that Managed Clinical Networks (MCNs) would be developed to deliver specialised healthcare services for children and young people. 3 The Children and Young People s Specialised Services Project (CYPSSP) was established by the Welsh Assembly Government (WAG) to take this work forward. 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 (previously published in 2003) Neonatal Services Paediatric Neurosciences Neurosurgery Neurology Neurodisability Paediatric Oncology Paediatric Palliative Care Paediatric Specialist Anaesthesia and Surgery Anaesthetics General Surgery Trauma and Orthopaedics 3

6 Ear, Nose and Throat Ophthalmology Plastic Surgery Burns Maxillofacial Cleft Lip and Palate Paediatric Nephrology Paediatric Cardiology and Congenital Cardiac Services (and access to Cardiac Surgery) Paediatric Endocrinology Paediatric Gastroenterology, Hepatology and Nutrition Paediatric Inherited Metabolic Disease Paediatric Respiratory Disease The Standards Documents This document is one of a series of standards for specialised services for children and young people, which were issued for consultation between 2005 and The first six final documents were launched by the Minister for Health and Social Services on the 8th December These were the Universal Standards, Cardiac Standards, Respiratory Standards, Palliative Care Standards, Neonatal Standards and the Gastroenterology, Hepatology and Nutrition Standards documents. The standards and key actions (KAs) in this document are written from an all Wales perspective and therefore apply to all children and young people with this particular 4, 5, 6 health need, wherever they live in Wales. There is also a Universal Standards document which contains key actions that apply to all specialised services for children and young people. This document was initially consulted on in 2005, however it has continued to evolve, as further universal key actions have been identified during the development of the service specific standards. The Universal Standards should be read and used in conjunction with each of the service specific standards documents. The CYPSSP standards should also be read and used in conjunction with the National Service Framework for Children, Young People and Maternity Services in Wales (Children s NSF) 7 in particular Chapter 2, Key actions universal to all children, which is relevant to all services and all children and young people. 4

7 The standards and key actions within the CYPSSP documents apply to all children and young people accessing the specific specialised service who are between 0-18 years of age. However, key actions that relate to transition apply to all young people who may require ongoing services beyond this age range. The age for transition to adult services must be flexible to ensure that all young people are treated by the most appropriate professional and in the most appropriate setting. This will depend on the young person s mental, emotional and physical development. Purpose of standards The standards and their key actions have been developed to provide a basis for service planners and providers to plan and deliver effective services. 8, 9 They are to be used to benchmark current services and inform the development of future services to meet the specialised health needs of children and young people across Wales. 10 Developing the standards An External Working Group (EWG) representative of key stakeholders has developed the standards for each service. Membership details can be found in Appendix 1 of the service specific standards documents. The contribution made by EWG members is greatly appreciated. We are particularly grateful to the children, young people and parents who have been involved in the 11, 12 development of this work. The standards have been Quality Assured by a Project Steering Group comprised of strategic stakeholders, details of which are included as Appendix 2. The standards have also been mapped against the Welsh Assembly Government s Healthcare Standards. 13 The Healthcare Standards for Wales set out the Welsh Assembly Government s common framework of healthcare standards to support the NHS and partner organisations in providing effective, timely and quality services across all healthcare settings. There are 32 Healthcare Standards covering four domains; The Patient Experience, Clinical Outcomes, Healthcare Governance and Public Health. These are designed to deliver the improved levels of care and treatment the people of Wales have a right to reasonably expect. The standards will be taken into account by those providing healthcare, regardless of the setting. Examples of how the Healthcare Standards map across the CYPSSP standards are referenced at the end of each section. The Healthcare Standards are used by Healthcare Inspectorate Wales (HIW) as part of their process for assessing the quality, safety and effectiveness of healthcare providers and commissioners across Wales. 5

8 Since the CYPSSP commenced in 2003, three project managers have successfully managed and facilitated the development of the standards documents. We would like to extend our grateful thanks to all of the Project Managers, namely Eiri Jones, Sian Thomas and Mary Francis for their contribution to this work. Delivering the standards Some of the key actions can be delivered within a year, however due to workforce and financial constraints others will take a number of years to achieve. Thus each key action has a timescale for delivery between one and ten years. Every attempt has been made to ensure that the key actions are clear and measurable. However when terms that cannot be measured such as timely and appropriate have been used it will be for the specific MCN to agree on the acceptable definition of the term. This will allow each standard and key action to reflect the particular needs of each individual specialised service. Whenever children are referred to in this document it should be accepted that this also includes young people. Reference to parents includes mothers, fathers, carers and other adults with responsibility for caring for the children. Monitoring the standards Standards will be monitored and audited annually as part of the MCN arrangements and will include audit of training, practice and compliance with pathways, protocols and agreed outcomes. Managed Clinical Networks (MCNs) Children and young people accessing specialised services in Wales inevitably experience different patterns of care depending on the geography and population characteristics that impact on service provision in their locality. However it is crucial that although the pattern of care provided may differ, the standard of care provided does not. Developing MCNs is a way of ensuring that all Welsh children and young people receive equitable and high quality specialised 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. 15 6

9 Through the formal establishment of MCNs, children and young people in Wales requiring specialised healthcare will access services in accordance with 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. 16 An MCN is comprised of a number of disciplines working together in a co-ordinated, non-hierarchical manner, unconstrained by professional and organisational boundaries. As a result of this collaborative mechanism, MCNs aim to facilitate and promote equitable, quality services through the provision of seamless care. Many disciplines already work in an informal professional network. However this is not the case across all professions and health sectors. MCNs provide a co-ordinated and managed structure, integral to which are agreed protocols and pathways of care, clinical audit, training and continuing professional development. It should be acknowledged that a child or young person might need to access more than one of the CYPSSP speciality services. The MCN framework and structures for each speciality should ensure flexibility to work together to meet the needs of the child and delivery of appropriate seamless care. 7

10 Dental Care Dental care is a service that has not been addressed separately. It is important to recognise that oral healthcare is a significant consideration, for all children and young people and because of their medical conditions many of the 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 this group of children and thus preventative oral healthcare advice should be part of every child s overall care plan so that families and carers are well informed as to the specific risks for each child. Specific oral assessment and care should also be available where appropriate. To facilitate this it is essential that the dental team is considered an integral part of the multidisciplinary approach advocated throughout this project and there should be a named dentist with specialised skills and knowledge in the oral healthcare of children e.g. a specialist in paediatric dentistry linked to each large district general hospital (DGH) to provide support and advice to the broader teams and ensure referral of children for appropriate healthcare. 8

11 Neuroscience Services for the Children and Young People of Wales Although it is recognised that one third of a general paediatrician s workload will involve children who have a neurological problem, the purpose of this document is to identify and define specialised neurosciences standards of care for children and young people in Wales, and how these services must be delivered. The document is divided into two sections, Neurology/Neurodisability and Neurosurgery. The two sections were developed by separate external working groups of health professionals, parents and service planners. Neurology, neurodisability and neurosurgery services are closely linked and so the standards and model of the two services have been published within one document and should be read together. Specialist services for children with acute neurological problems will be provided by a specialist centre based in a paediatric unit with access to neurosurgery, paediatric intensive care, paediatric neurology, other paediatric subspecialties and a full range of diagnostic facilities. Specialist outpatient and neurodisability services should be available at the specialist centres. It is only through the establishment of managed clinical networks in neurology and neurodisability with shared standards outlined in this document and in the Children s NSF document 7 that children and young people in Wales will be provided with equity of access and satisfactory clinical care. It is important to emphasise that, wherever possible, services should be provided locally for children and families by dedicated outreach services from the specialist centres. It must be recognised that children with complex neurological problems require care that is integrated at secondary and tertiary level but that is usually delivered by both secondary and community services. This principle is illustrated by the example of the child with cerebral palsy (see page 15). Finally, it is important that transition from paediatric to adult care is recognised and managed appropriately in a smooth and seamless manner. This may be through the involvement of a key worker who works at the interface between child and adult services or through implementation of a joint organisation transition plan. 9

12 PART 1 - Neurology and Neurodisability Services Approximately one third of child neurological disease requires specialised services, although this figure will show local variation. Specialised paediatric neurology includes acute encephalitis, myelopathies, certain categories of epilepsy, muscle and peripheral nerve disease, movement disorders, neurometabolic disease, a wide range of neurogenetic syndromes and cerebrovascular disease. It also includes diagnosis and specific treatment aspects of chronic disabling conditions including the cerebral palsies and spina bifida. The list of neurological problems requiring specialised care is found Welsh Health Circular (2003), 063 NHS Planning and Commissioning Guidance 8 and Specialised Service National Definitions Set, (2003) Department of Health. 17 8, 9, 17 Acute neurological conditions requiring specialist care include (listed alphabetically). Brain tumours Cerebral abscess Cerebrovascular disorders including stroke, haemorrhage and venous sinus thrombosis Hydrocephalus/shunt malfunction Severe encephalopathies: epileptic (including refractory convulsive and non-convulsive status epilepticus) infective metabolic post-hypoxic-ischaemic toxic unexplained Severe head Injury (with access to rehabilitation) Spinal cord compression and myelopathy (transverse myelitis and severe Guillain-Barre syndrome). However, several disorders occur more frequently (e.g. uncomplicated epilepsy) and can be managed in secondary care with access to specialised services where appropriate. 10

13 Close links with a number of other specialised services (below) are vital, 8, 9, 17 including joint clinics. Adult neurology ALAS (Artificial Limb and Appliance Service) Audiology Immunological disorder/infectious disease Medical genetics services Metabolic diseases Neonatal and paediatric intensive care Oncology Paediatric cardiology/cardiac surgery Paediatric endocrinology Paediatric gastroenterology and nutrition services Paediatric palliative care Paediatric pathology/histopathology/chemical pathology Paediatric respiratory medicine and sleep studies Specialist child and adolescent mental health services including those with a specific interest in learning disability Surgical specialties: ENT general paediatric surgery neurosurgery ophthalmology orthopaedics (limb and spine) urology Nutrition and dietetic services. Therefore these standards may need to be used in conjunction with the relevant service standards document. 11

14 The following neurosciences support services are important elements of any MCN: Specialist nursing service Most specialist centre services will incorporate nurse specialists (e.g.epilepsy, neuromuscular disorders and neurosurgery). However, such specialist nurse support is not exclusive to these centres and, for a number of the more common neurological disorders (specifically epilepsy) should also be available at secondary (local) level. It is recognised that that there needs to be an expansion of the nurse specialist service at both secondary and tertiary level. This may be via the establishment of nurse practitioner and nurse consultant rather than nurse specialist posts. Paediatric specialist dietetic services Many children and young people with neurological disorders have associated feeding problems and specific nutritional requirements. The specialist paediatric dietitian ensures nutritional support to optimise growth and development and is a core member of the MCN i.e. feeding team. Neurophysiology Most neurophysiological activity is specialised. This includes EEG recording, video telemetry, evoked responses, intra-operative monitoring, peripheral nerve and muscle studies. Routine EEG investigations undertaken at secondary level should not necessarily be regarded as specialised. However, the interpretation of EEGs should be undertaken by a neurophysiologist or paediatric neurologist. Radiology Most paediatric neuroradiology is specialised. MRI and CT scanning done at secondary level is not specialised, although specialist opinions are often required. More complex paediatric neuroradiology is part of specialised services and is totally integrated with other paediatric neurosciences services. Neuropathology All paediatric neuropathology should be regarded as specialised and will be based in the lead/specialist centres. 12

15 Paediatric biochemistry and genetic clinical and diagnostic services Investigation of neurological disorders requires specialist laboratory services with the support of clinical biochemists and geneticists. Liaison between these services, paediatric neurology and the paediatric metabolic specialist ensures cost efficiency and effectiveness. Neuropsychiatry Paediatric neuropsychiatry is specialised. The high levels of co-morbidity of behaviour/ psychiatric disorder with childhood brain diseases requires integrated neuropsychiatry input as a part of specialised paediatric neurosciences services. These services will work together with non-specialised paediatric and mental health services. Neuropsychology Paediatric neuropsychology is specialised. This service is integrated with other specialised neurosciences services. It contains the evaluation of children with complex learning and memory impairments in the context of childhood brain disease and dysfunction. Specialist therapy and rehabilitation services These should be available at lead and specialist centres as well as at secondary levels via the MCN. This may be facilitated by the establishment of consultant therapist posts. In addition the Bobath Children s Therapy Centre is a specialist resource available to children and young people with cerebral palsy from South, Mid and North Wales. Neurodisability Paediatric neurodisability is a very new speciality and therefore is less well developed than others in paediatrics, and few paediatricians work exclusively in this field. There is a need for more specialised services for children with a neurodisability, as well as academic and clinical leadership within a network for paediatricians. Specialised neurodisability services are delivered by a multidisciplinary team, which should include specialised therapy and rehabilitation services. 13

16 Complex neurodisability and rehabilitation Complex rehabilitation is largely managed by the multidisciplinary community and secondary paediatric services. However, specialised services will be needed when a child has an acute episode resulting in neurological impairment or when the secondary services seek specialist advice to assist in the diagnosis and management of a chronic/ complex disorder. Children and young people requiring rehabilitation or those with, for example, complex congenital impairments will require specialist management to maximise their development progress and minimise their disabilities. These very specialised services require expert multidisciplinary teams, which cannot always be sustained at secondary level, although a collaborative and integrated approach between secondary and specialised care is essential. The following should be regarded as specialised: Short and medium term medical rehabilitation for acute brain and spinal cord injury, including chronic ventilation and severe epilepsy Behavioural/cognitive/neuropsychological rehabilitation programmes Management of spasticity including gait analysis, Botulinum Toxin and Intrathecal Baclofen injections (in conjunction with neuro-orthopaedics and orthotic management) Management of dysphagia/swallowing difficulties (including video fluoroscopy) Assistive technology, such as augmentative communication devices, environmental control and powered mobility Specialist spinal/postural management. There are a number of highly specialised services that would not be expected in every paediatric neurosciences centres. Care pathways should exist for referral of children to England for these services as appropriate. 14

17 Example of integrated working in paediatric neurology/neurodisability A summary of the typical clinical pathway and integration of services between primary, secondary and specialist care is illustrated in a child with cerebral palsy. 1. Primary care - the pre-school child health promotion programme carried out in primary care identifies developmental delay (particularly motor delay) and the child is referred to the secondary (local) developmental paediatrician. 2. Secondary care - the child is assessed, investigated and managed as required for the motor and other possible associated problems. Co-ordination of care is essential as numerous professionals may be involved (e.g.: physiotherapists, occupational and speech and language therapists, child development team (CDT), clinical and educational psychologists, ophthalmologist, audiologist, social worker, paediatrician, feeding team and orthopaedic surgeon). Primary care needs to be kept up to date about interventions including drug treatment. 3. Specialist care - the child may require input from a paediatric neurologist if diagnostic issues require clarification and/or from a clinical geneticist. The specialist spasticity clinic may be involved and, if associated epilepsy is difficult to control, the paediatric neurologist epilepsy service may be required. If feeding and swallowing difficulties are not amenable to medical/speech and language therapist/dietetic at a secondary level, management at a specialist clinic may be needed in arranging gastrostomy and anti reflux surgical procedures. All 3 levels of care and effective communication within and between these levels are essential to ensure that the child is managed holistically and without duplication of services and multiple unnecessary appointments. Typically, other neurological disorders (e.g. social and communication [autism] and neuromuscular disorders and epilepsy) demonstrate very similar complex needs. The rural nature of much of Wales should be taken into account because this will affect the child s access to both their secondary and specialist services. 15

18 Current Service Model Neurology Specialised services for children with acute and chronic neurological conditions are provided by Royal Liverpool Children s Hospital (RLCH) and the Robert Jones Agnes Hunt Hospital (RJAH), Oswestry (chronic), for children in North Wales and by University Hospital of Wales (UHW), Cardiff and Swansea for children in South Wales. The lead centres in North and South Wales (respectively RLCH and UHW) provide access to paediatric neurosurgery, paediatric neurology and PICU within a paediatric unit. In South Wales, Swansea also provides a range of specialised services for children with acute and chronic neurological problems locally and from West Wales. RLCH, UHW and Swansea are recognised by the College Speciality Advisory Committee (CSAC) and the British Paediatric Neurology Association (BPNA) as training centres. Models of care currently vary across Wales but generally, for areas of Wales outside Cardiff and Swansea outreach neurology clinics are currently the mainstay of nonacute access to specialist neurological expertise for children. These clinics have often been provided with inadequate local paediatric support and administration. The current outreach sessions are shown in Appendix 4. There is no consultant paediatric neurologist with responsibility for North Wales and this must be addressed as a matter of priority if the needs of North Wales children and young people are to be met according to these standards. Specialised epilepsy services are provided at RLCH, UHW and Swansea. However, there are clear gaps in service provision (e.g. neuropsychology and video telemetry). Regular meetings of clinicians interested in epilepsy are now held in North and South Wales and the West Midlands and, although these are currently organised on an informal and non-managed basis, they could provide the forum to develop epilepsy services in Wales. There are informal network arrangements for neuromuscular care in North and South Wales. These could provide a framework to develop multidisciplinary care in Wales. Neurodisability There is no specialised neurodisability centre in Wales although much specialised neurodisability work is undertaken at secondary level and by the specialist neurology centres. There are examples of high quality local services and training, but access to these is limited. The current service model in Wales is that the local secondary multidisciplinary team addresses the multiple health needs of the child with complex neurodisability. There are no multidisciplinary out-reach clinics for children with neurodisabilities and all these children have to travel to the lead and specialist centre when requiring tertiary input. An informal network for paediatric neurodisability is at an early stage of development. There are training posts in paediatric neurodisability in Swansea, Newport and Oswestry, and a training rotation in South Wales has been recognised by CSAC (involving Swansea and Newport). 16

19 Proposed Service Model It is impossible to completely separate specialist neurology services, particularly neurodisability, from secondary care and therefore proposals for local (secondary) services within the network are included. Services should be provided as part of a MCN. Neurology Lead centres for acute neurology by definition require PICU, 24-hour paediatric neurology cover and paediatric neurosurgery within a paediatric unit and are already established in RLCH for North Wales and UHW for South Wales. In addition Swansea should be designated a specialist centre and, although unable to provide all specialised services, can provide some acute neurological services, specialist investigations, a joint neurosurgery/neurology outpatient service with specialist nursing input, outreach and neuromuscular clinics and training. The lead and specialist centre will work together as one network across South Wales. This will include a single on-call rota for South Wales and a range of specialist clinics across the two sites. The outreach clinic service in both North and South Wales should be formally commissioned as part of a MCN and dedicated clinics should be both regular and frequent enough to allow standards to be met. In North Wales, additional dedicated paediatric neurology sessions are needed to provide dedicated specialist sessions at the North Wales in order to provide an integrated and holistic service for children with neurological disorders and to achieve the standards outlined in this document. RJAH continues to provide a specialised service for the children of Wales with chronic neurology and neuromuscular disease. In South and Mid Wales remodelling and expansion of the current service is also required to provide a sustainable future and to provide adequate specialist neurology and joint clinics in the lead and specialist centre as well as outreach clinics in all DGHs in South and Mid Wales. Neurodisability A MCN for neurodisability services will need to be established with provision for lead/ specialist centres based on health needs assessment. Dedicated paediatric neurodisability sessions will need to be identified for the neurodisability element of the service and specialised multidisciplinary teams need to be defined in the lead and specialist centres to provide outreach sessions and liaise with local child development teams. 17

20 Standard 1: Access to Neurology and Neurodisability Services Rationale: All children identified with a neuroscience health need will have access to high quality, evidence based care provided by appropriately trained multi-disciplinary teams. Key Actions: Key Action 1.1 Telephone access to specialist paediatric neurology advice is available for staff working in secondary care 24 hours a day. 1.2 Access to specialist professional advice from the neurology MDT in the lead and specialist centres (Appendix 3) is available to families and other professionals Mon-Fri 9am - 5pm. 1.3 A referral pathway is in place for emergency access to the lead/specialist centre for children and young people with acute neurological problems. 1.4 Once a referral is made to the lead/ specialist centre, one of the following actions is agreed: immediate transfer and emergency transport, with appropriately trained staff out patient/day-case appointment at a lead/specialist centre local outreach clinic appointment. Responsible organisation Specialist Centres Specialist Centres Specialist Centres MCN MCN Ambulance Trust Lead centres Specialist Centres Timescales 18

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