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All Wales Neurosciences Standardsfor Children and Young People’s Specialised Healthcare Services

CMK-22-12-160E1240910ISBN: 978 0 7504 5215 1© Crown Copyright July 2009

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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

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Children and Young People’s Specialised Services

Introduction to the ProjectIn 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 -

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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 DocumentsThis document is one of a series of standards for specialised services for children and young people, which were issued for consultation between 2005 and 2009. The first six final documents were launched by the Minister for Health and Social Services on the 8th December 2008. 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 health need, wherever they live in Wales.4, 5, 6

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.

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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 standardsThe 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 standardsAn 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 development of this work.11, 12

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.

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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 standardsSome 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 standardsStandards 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

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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.

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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.

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Neuroscience Services for the Children and Young People of WalesAlthough 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 document7 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.

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PART 1 - Neurology and Neurodisability ServicesApproximately 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 Guidance8 and Specialised Service National Definitions Set, (2003) Department of Health.17

Acute neurological conditions requiring specialist care include (listed alphabetically).8, 9, 17

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.

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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.

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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.

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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.

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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.

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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.

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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 non-acute 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).

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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 Health Boards 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.

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Standard 1: Access to Neurology and Neurodisability ServicesRationale: 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 Responsible organisation Timescales

1.1 Telephone access to specialist paediatric neurology advice is available for staff working in secondary care 24 hours a day.

Lead CentresSpecialist Centres

Less than 1 year

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.

Lead CentresSpecialist CentresHealth Boards

1-3 years

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.

Lead CentresSpecialist CentresHealth BoardsMCN

Less than 1 year

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 staffout patient/day-case appointment •at a lead/specialist centrelocal outreach clinic appointment.•

Health BoardsMCN Ambulance TrustLead centresSpecialist Centres

Less than 1 year

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Key Action Responsible organisation

Timescales

1.5 Referrals from screening for Duchenne Muscular Dystrophy (DMD) are seen by a clinician with appropriate training and expertise within 2 weeks.

Health Boards Less than 1 year

1.6 Referrals from screening for Duchenne Muscular Dystrophy (DMD) are offered an appointment to see one of the lead clinicians in the neuromuscular specialist centres within 4 weeks of confirmation of a muscle disorder.

Health BoardsWHSSCLead centresSpecialist Neuro-muscular Centres

Less than 1 year

1.7 All children with a neuromuscular condition are offered an appointment in a specialist multidisciplinary muscle clinic (either at one of the specialist neuromuscular centres or at a neuromuscular outreach clinic) on a regular basis in addition to continuing local care. Clinic staff include a consultant neurologist/neuromuscular specialist, specialist physiotherapist and support worker.

Specialist Neuro- muscular CentresHealth BoardsWHSSC

Less than 1 year

1.8 All children with a neuromuscular condition should be seen (when appropriate) in respiratory support and joint scoliosis clinics involving the neuromuscular team.

Specialist Neuro- muscular CentresWHSSCHealth Boards

Less than 1 year

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Timescales

1.9 Access to:urgent EEG is available and reported •within 24 hours at all lead centresnon-urgent EEG is available and •reported within 4 weeks at all Health Boards child friendly EEG facilities are •available to all children with suspected epilepsy video telemetry is available at lead/•specialist centres.

Lead CentresSpecialist CentresHealth BoardsWHSSC

Less than 1 year

1.10 Access to:urgent MRI at lead/specialist centres •(for non neurosurgical emergencies) is available and reported on within 24 hrsnon urgent MRI scans (including •those under general anaesthetic) are available and reported on within 12 weeks at all lead and specialist centres.

Lead CentresSpecialist CentresHealth BoardsWHSSC

Less than 1 year

Less than 1 year

1.11 Access to an integrated team-based spasticity service is available at specialist neurodisability centres to all children with spasticity including the availability of the following services:

Botulinum Toxin •Surgical procedures.•

WHSSCHealth BoardsLead CentresSpecialist Centres

1-3 years

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Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2, 3, 6, 12, 22, 24 and 28.


Timescales

1.12 Children have access to joint multidisciplinary clinics within the MCN including:

joint Orthopaedic clinics •(limbs and spine)joint feeding clinics•assisted technology clinics•joint specialist therapy clinics •and servicesjoint specialist seating clinics•wheelchair/mobility clinics•joint surgical and neurosurgical clinics•joint neuromuscular clinics. •

WHSSCHealth BoardsLead CentresSpecialist CentresALAS

1-3 years

1.13 Access to the all Wales genetic service is available to all children, young people and families with suspected syndromic or inherited neurological disorder.

Health BoardsWHSSC

1-3 years

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Standard 2: Management and Continuing Care for Neurology and Neurodisability Services

Rationale: All children with specialised neurology/neurodisability conditions are provided with fully resourced services based on specific care pathways.

Key Actions:


Diagnosis/Assessment

2.1 Children with complex conditions defined by the NHS Planning and Commissioning Guidance8, 9 Neurology and Neurodisability Specialised Services National Definitions Set17 and the BPNA Guidelines are discussed consultant to consultant.

Health BoardsMCN

Less than 1 year

2.2 Facilities for neurophysiological investigations are available at lead and specialist centres.

Lead CentresSpecialist CentresWHSSC

1-3 years

2.3 Neuro-imaging under general anaesthetic or sedation is available to the network with review of imaging by a neuroradiologist with paediatric experience if necessary.KAs 1.9, 1.10

Health BoardsWHSSCMCN

1-3 years

2.4 There are multidisciplinary teams at local and regional level. (Appendix 3)

Health Boards 1-3 years

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Timescales

All specialised neurology/neurodisability services

2.5 A multidisciplinary team (Appendix 3) is available to all children and young people with a disability (with and without challenging behaviour including sleep problems).7

Lead CentresSpecialist CentresHealth Boards

1-3 years

2.6 Specialist therapy and nursing services are in place across the network to support children, young people and their families and other professionals across the statutory and voluntary services.18


2.7 Specialist neuropsychology support is available for all children, young people and their families who access specialist neurology/neurodisability services.18

Health BoardsWHSSC

1-3 years

2.8 A multi-disciplinary Child Development Team (CDT) is available for each Health Board area.7


2.9 All children and young people requiring wheelchairs are provided with a comprehensive wheelchair service with advice from the multi-professional specialist team on seating and ongoing assessment at each Health Board area. This service will include repair and maintenance procedures and a review of the child’s needs as a minimum on an annual basis in accordance with individual assessed needs.7 (KA 5.17)

Health BoardsALASMCN

1-3 years

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Timescales

2.10 Specialised equipment and aids are available according to assessed need and co-ordinated. This includes maintenance arrangements.7 (KA 5.14)

Health BoardsMCN

1-3 years

2.11 Each Local Health Board provide community resources e.g. those which are sufficient to prevent unnecessary hospital admission and not delay discharge.19


Epilepsy

2.12 A specific epilepsy service for children and young people exists at each Health Board level which includes services for the early management of suspected epilepsy.20


2.13 In every Health Board there is access to a paediatrician with relevant training and expertise in epilepsy based on NICE guidance.20

Health BoardsMCN

1-3 years

2.14 Each Health Board has a specialist epilepsy nurse for children and young people.


2.15 A care pathway exists whereby children with more complex epilepsy are referred to a paediatric neurologist in compliance with NICE guidelines.20

MCNLead CentreSpecialist CentreHealth Boards

1-3 years

2.16 There is a clear pathway for referral to epilepsy surgery services.20 (see part two neurosurgery standards)

Health BoardsMCN

1-3 years

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Timescales

Acquired Brain Injury/Rehabilitation

2.17 A referral pathway is in place for the management of a child with brain or CNS injury.21, 22, 23

MCN Less than 1 year

2.18 Initial referral to the rehabilitation team takes place within 24 hours of brain or CNS injury with early referral to secondary care. Assessment follows at an appropriate time for each child.23

Lead CentresHealth Boards

Less than 1 year

2.19 All children and young people who require neurorehabilitation have access to specialist rehabilitation services which provide a child-centred rehabilitation programme delivered by a multi disciplinary team. (Appendix 3)

Lead CentresSpecialist CentresWHSSC

1-3 yearsFull compliance4-10 years

2.20 There is an appropriate secondary care pathway for children and young people requiring acute and long-term rehabilitation.

MCNHealth Boards

Less than 1 year

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 1, 2, 3, 4, 11, 12, 14, 19, 22, 24 and 28.

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Standard 3: Professional Education and Training Rationale: All professionals caring for children and young people are trained to the required standard to deliver a high quality, evidence based service.18 standard 5

Key Actions:

Key ActionResponsible organisation Timescales

3.1 Specialist nurses and therapists in health and social care have access to prescribing training.7


Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 11 and 22.

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Standard 4: Clinical GovernanceRationale: Care is delivered on the best available evidence. Pathways and protocols circulated widely and agreed nationally ensure that the child receives high quality care wherever it is delivered.

Key Actions:


4.1 Multidisciplinary teams managing children with neurological problems and neurodisability have facilities for clinical audit to deliver agreed audit programmes.18 KA 5.7

Health BoardsMCN

1-3 years

4.2 Clear guidelines and referral pathways are in place across the network for the management of common neurology/neurodisability problems.

Health BoardsMCN

1-3 years

4.3 Young people and or parents are offered copies of neurology correspondence.


Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS, 6, 11, 12 and 28.

28

PART 2 - Neurosurgery ServicesPaediatric neurosurgery is a specialised service delivering surgical care for congenital and acquired central nervous system conditions.

For the purpose of developing these standards, the EWG agreed that paediatric neurosurgery can be defined as having two key management elements:

emergency neurosurgery•

elective neurosurgery.•

As with all specialised services, there needs to be clear working relationships across a variety of services in order to provide effective and safe paediatric neurosurgical care. Elective paediatric neurosurgery needs the support facilities of paediatric intensive care and paediatric oncology on the same site.

Care pathways need to be in place for the emergency management of neurosurgical care. The development of care pathways will be a key role of the MCN.

In addition to the Children’s NSF7 and the Universal Standards18, these standards need to be used in conjunction with the All Wales Anaesthesia and Surgery Standards for Children and Young People’s Specialised Healthcare Services24.

There are a small number of Neuroscience Standards that relate to the management of brain tumours. These are also covered by and clearly referenced to the National Cancer Standards (NCS) for Children with Cancer25 which will be published in 2010. Clinicians providing care for children with brain tumours should ensure they meet the requirements of the NCS and participate in the NCS self assessment process.

Specific links are necessary with the following specialised services:

Neurology and Neurodisability•

Care of the Critically Ill Child•

Oncology•

Neonatal•

Endocrinology•

Ophthalmology•

ENT•

Paediatric General Surgery•

Plastic Surgery•

29

Maxillofacial Surgery •

Palliative Care.•

Therefore these standards may need to be used in conjunction with other relevant service standards document.

Key working relationships include:

Paediatricians•

Paediatric Neurologists•

Paediatric Anaesthetists•

Paediatric Intensivists•

Paediatric Accident and Emergency staff•

Children’s Nurses•

Paediatric Therapists•

Multidisciplinary Neuro-rehabilitation team.•

Some elements of paediatric neurosurgery will need to be delivered in a highly specialist centre. These include:

syndromic craniofacial anomalies•

some childhood epilepsy surgery•

complex spinal dysraphism•

some brain and spinal tumours•

evaluation of complex cerebro-vascular disease including surgical revascularisation•

functional and stereotactic radiosurgery.•

Access to these highly specialised services need to be co-ordinated through the nominated lead centres.

In developing these standards, information has been drawn from the following key documents:

“Safe Neurosurgery” (1993)• 26

“Safe Paediatric Neurosurgery” (1998)• 27

“Safe Neurosurgery 2000” (2000)• 28

“Surgery for Children: Delivering A First Class Service” (2007)• 29

30

“Standards for Patients Requiring Neurosurgical Care” (2002)• 30

“Head Injury Triage, Assessment, Investigation and Early management of Head Injury •in Infants, Children and Adults” (2003)23

“Improving Outcomes in Children and Young People with Cancer” (2005)• 16.

There is a lack of firm evidence within this field and many of the above documents serve only as guidance. Where standards exist they should be used in conjunction with this document.

31

Current Service ModelFollowing on from the Review of Tertiary Services1 and completion of option appraisal and independent neuroscience review,31, 32 significant progress has been made within current service configuration to meet the proposed future configuration.

South and Mid Wales

Provision of elective and emergency surgery for the children and young people of South and Mid Wales is based at the lead centre, UHW. Emergency neurosurgery is also provided at the specialist neurosciences centre at Morriston Hospital, Swansea.

North Wales

Provision of elective and emergency surgery for the children and young people of North Wales will be based at the RLCH.

Proposed Service Model

The proposed service model will be dependent on the location of adult and paediatric neurosurgical services in South Wales and work being taken forward following recommendations of the Welsh Adult Neurosciences Expert Review undertaken in 2008.32

32

Standard 5: Emergency Neurosurgery for Children and Young People

Rationale: All children and young people requiring emergency neurosurgery have access to high quality, evidence based care provided by an appropriately trained and experienced neurosurgeon who is supported by appropriate staff and facilities.28 Pathways and guidelines circulated widely and agreed nationally will ensure that the child receives high quality care wherever it is delivered.

Key Actions:


General

5.1 All children and young people requiring emergency neurosurgical care are discussed with the designated lead centre PICU (RLCH and UHW) in line with the agreed care pathway.


5.2 All children and young people requiring emergency transport and transfer to a neurosurgery centre have access to transport with appropriately trained staff.

Health BoardsAmbulance Trust

1-3 years

5.3 Access to an emergency CT scan is available in every hospital admitting children and young people and there is clinically appropriate access to MRI scanning.

Health BoardsWHSSC

Less than 1 year

5.4 An appropriate image transfer system is in place at every centre that performs neuroimaging.


5.5 24hr telephone advice from a lead/specialist centre neurosurgeon is available to all referring hospitals. No child should be managed without paediatric neurosurgical advice.


Less than 1 year

33


Timescales

5.6 Each neurosurgical unit providing care for emergencies has clinicians with the necessary experience and training to undertake the immediate care of neurosurgical emergencies in children.23


Less than 1 Year

5.7 Children and young people requiring neurosurgery have access to paediatric intensive/high dependency care.21, 23, 30

Health Boards WHSSC

Less than 1 year

5.8 Access to the rehabilitation team is available after emergency neurosurgery; this team provides continuity of care at the lead/specialist centres from time of admission to discharge.

Health BoardsLead CentresSpecialist Centre

1-3 years

5.9 There is a cohort of nurses who have training and demonstrated competency in the care of children and young people requiring neurosurgical management in the lead/specialist centres.

Health BoardsLead CentresSpecialist Centre

1-3 years

5.10 There is access to a neurosurgical nurse specialist.


Less than 1 year

Trauma

5.11 Initial management of children and young people with head and spinal cord injuries is based on a head injury protocol and advanced trauma life support (ATLS)/advanced paediatric life support (APLS) principles.29, 30


34


Timescales

5.12 All children and young people with a head injury have documented assessment using a recognised tool.23, 30

Lead CentresSpecialist CentreHealth Boards

Less than 1 year

Tumour

5.13 All children and young people requiring tumour neurosurgery are discussed with the neuro-oncologist prior to surgery. If the surgery is performed as an emergency, this discussion must take place as soon as possible after surgery.See National Standards

for Children with Cancer 25, (4.1-4.12)


Less than 1 year

5.14 A care pathway is in place for the management of raised intracranial pressure.See National Standards for Children with Cancer 25,

(6.1)

Lead CentresSpecialist CentreHealth BoardsMCN

Less than 1 year

Hydrocephalus

5.15 A care pathway is in place for emergency management of a blocked shunt.30


Less than 1 year

Haemorrhage

5.16 A care pathway is in place for emergency management of an intracranial haemorrhage.30


Less than 1 year

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2, 3, 11, 12, 22 and 28.

35

Standard 6: Elective Neurosurgery for Children and Young People

Rationale: All children requiring elective neurosurgery will have access to high quality, evidence based care provided by an appropriately trained neurosurgeon who is supported by a multi-disciplinary team.

Key Actions:


General

6.1 Elective paediatric neurosurgery is only undertaken at lead centres where there is a PIC facility on site.

Lead CentresWHSSC

Less than 1 year

6.2 Each neurosurgery unit providing specialist care for children and young people has a minimum of two appropriately trained neurosurgeons who are affiliated to the paediatric neurosurgery group of the SBNS.30

Lead CentresHealth BoardsWHSSC

Less than 1 year

6.3 There is an appropriately staffed paediatric neurosurgical rota at the lead centres.

Lead CentresWHSSC

1-3 years

6.4 There are dedicated paediatric neurosurgery outpatient clinics at the lead centres.

Lead CentresHealth BoardsWHSSC

1-3 years

6.5 There are specialist outreach outpatient clinics at local level based on need.


6.6 Access to the rehabilitation team is available post elective neurosurgery; the team provides continuity of care including discharge planning.

Health BoardsWHSSC

1-3 years

36


Timescales

Tumour

6.7 All children and young people requiring tumour neurosurgery are discussed with a neuro-oncology MDT prior to surgery.See National Standards for Children with

Cancer 25, (4.1-4.12)


Less than 1 year

6.8 All surgeons performing neurosurgery for oncology patients are able to provide evidence of appropriate experience and skills.See National Standards for

Children with Cancer 25, (9.1-9.11)

Lead Centres Less than 1 year

6.9 All children under 16 years with CNS tumours receive their surgical care in a CCLG recognised lead centre.See National Standards for Children with Cancer 25, (1.1)

Lead CentresWHSSC

Less than 1 year

Hydrocephalus

6.10 Children and young people with hydrocephalus requiring elective surgical management are referred to an appropriately trained neurosurgeon in the lead centre.30

Health BoardsWHSSCLead Centres

Less than 1 year

6.11 Follow up care is directed by an appropriately trained neurosurgeon and/or paediatric neurologist.29

Lead CentresSpecialist CentreHealth Boards

Less than 1 year

37


Timescales

Spina Bifida and other neural tube defects

6.12 All children and young people with spina bifida and other neural tube defects are assessed by an appropriately trained neurosurgeon and/or paediatric neurologist and facilities are available for follow up.


1-3 years

Examples of some of the Healthcare Standards for Wales (HCS) that map across to the above standard are HCS 2, 4, 11, 12, 22 and 24.

38

GlossaryThis glossary should be used in conjunction with that provided in the Children’s NSF.7

ALAS Artificial Limb and Appliance Service

BPNA British Paediatric Neurology Association

CCLG Children’s Cancer and Leukaemia Group

CNS Central Nervous System

Health Boards All Health Boards delivering children’s healthcare services

Highly Specialised Care A tertiary centre providing highly specialised services on a U.K wide basis

Joint Organisation Transition Plan A plan, based on an assessment of a young person’s needs, which identifies services to be provided by all the organisations involved in the life of the young person to ensure a smooth transfer of care through to adult services

Key Transition Stages Developmental stages in middle and late childhood when children undergo physical, cognitive, social and emotional transitions

Lead Centres 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, Liverpool for North Wales and UHW, Cardiff for South Wales

Local Acute Services Services that are currently provided by the DGH (District General Hospital)

Managed Clinical Networks Linked groups of health professionals from primary, secondary and specialist care, working in a co-ordinated manner, unconstrained by existing boundaries, to ensure equitable provision of high quality and clinically effective services

39

Neuromuscular centres A neuromuscular centre offers a multi-disciplinary assessment that includes clinicians with in interest in neuromuscular disease, specialist support staff and therapy expertise. They are involved in continuing audit of care and education

PICU Paediatric Intensive Care Unit

Specialist A person who is highly skilled or knowledgeable in a particular field or area of work

Specialist Centre A specialist centre provides many but not all of the services provided by the lead centre. Lead and specialist centres will work together to provide the whole range of services across the network

Supra-regional A specialist centre providing highly specialised services on a UK wide basis

Universal Standards and Key Actions Standards and key actions which apply to all of the specialised services

WHSSC Welsh Health Specialised Services Committee

40

Appendix 1

Neurology and Neurodisability External Working Group (at time of consultation)

Irene Allen Head of Children’s Health and Policy, Welsh Assembly Government

Richard Appleton Paediatric Neurologist, Royal Liverpool Children’s Hospital

Michelle Barber Consultant Paediatrician with an interest in Neurodisability, Gwent Healthcare NHS Trust

Laura Beeston Specialist Epilepsy Nurse, Royal Liverpool Children’s Hospital

Steven Boyd Child LD Psychiatry, Royal Liverpool Children’s Hospital

Jenny Carroll Bobath Children’s Therapy Centre

Alison Edwards Pembrokeshire Local Health Board

Glenys Evans Bobath Children’s Therapy Centre

Jane Fenton-May Associate Specialist, Medical Genetics, Cardiff and Vale NHS Trust

Frances Gibbon Paediatric Neurologist, Cardiff and Vales NHS Trust

Janet Horn Community Paediatrician, North West Wales NHS Trust

Vicky Huett Superintendent Physiotherapist, Cardiff and Vale NHS Trust

Huw Jenkins Director of Healthcare Services for Children and Young People, Welsh Assembly Government

Val Klimach Consultant Paediatrician, North Wales NHS Trust

Wynford Lloyd-Davies Artificial Limb and Appliance Service

Eileen Kinley Physiotherapist, Royal Liverpool Children’s Hospital

Ian Langfield Specialised Commissioner, Health Commission Wales

Clare Lucignoli Parent

41

Siobhan McMahon Head of Speech and Language Therapy, Royal Liverpool Children’s Hospital

Phillip Minchom Paediatrician, North Wales NHS Trust

Khalid Mohamed Paediatric Neurologist, Royal Liverpool Children’s Hospital

Johann te Water Naude Paediatric Neurologist, Cardiff and Vale NHS Trust

Pat O’Meara Paediatric Palliative Care Nurse Specialist, Gwent Healthcare NHS Trust

Diane Rogers Head of Children’s Physiotherapy, St David’s Children’s Centre

David Salter Deputy Chief Medical Officer, Welsh Assembly Government

Martin Smith Consultant Paediatric Neurologist, Robert Jones and Agnes Hunt Hospital, Oswestry

Anne Sweeney Specialist Epilepsy Nurse, Royal Liverpool Children’s Hospital

Margaret Stanley Gwent Epilepsy Group

Alan Wardhaugh Paediatric Intensivist, Cardiff and Vale NHS Trust

Cathy White Paediatric Neurologist, Swansea NHS Trust

On the 8th August 2005, a focus group event was held with a cohort of parents who access specialised services for children with neurological conditions. The outcome of discussions held was used to inform these standards. We would like to thank all the parents who took part in this event.

42

Neurosurgery External Working Group Members (at time of consultation)

Dr Frances Gibbon Paediatric Neurologist, Cardiff and Vale NHS Trust

Mr Richard Hatfield Neurosurgeon, Cardiff and Vale NHS Trust

Dr Huw Jenkins Director of Healthcare Services for Children and Young People, Welsh Assembly Government

Mr Neil Buxton Consultant Neurosurgeon, Royal Liverpool Children’s Hospital

Ian Langfield Specialised Commissioner, Health Commission Wales

Andy MacNab Paediatric A & E Consultant, Swansea NHS Trust

Mr John Martin Neurosurgeon, Swansea NHS Trust

Dr Phillip Minchom Paediatrician, North Wales NHS Trust

Dr Khalid Mohamed Paediatric Neurologist, Royal Liverpool Children’s Hospital

Pat O’Meara Paediatric Palliative Care Nurse Specialist, Gwent Healthcare NHS Trust

Diane Rogers Head of Children’s Physiotherapy, Cardiff and Vale NHS Trust

Mr Neil Buxton Neurosurgeon, Royal Liverpool Children’s Hospital

Mr Jonathan Vafidis Neurosurgeon, Cardiff and Vale NHS Trust

Dr Alan Wardhaugh Paediatric Intensivist, Cardiff and Vale NHS Trust

Dr Cathy White Paediatric Neurologist, Swansea NHS Trust

Dr Jeremy Williams Paediatric A & E Consultant, Carmarthenshire NHS Trust

43

Appendix 2

Project Steering Group Members (at time of consultation)

Dr Michael Badminton Welsh Scientific Advisory Committee

Caroline Crimp Association for the Welfare of Children in Hospital

Keith Bowen Contact a Family

Gareth Jones (Observer) Children Commissioner’s Office

Andrew Ferguson Health Commission Wales

Zoe Goodacre Health Commission Wales

Sue Greening Welsh Dental Committee

Becky Healey Welsh Nursing & Midwifery Committee

Angela Hillier Welsh Therapies Advisory Committee

Tom Woods Trust Chief Executives

Alison Lagier Local Health Board Chief Executives

Andrea Mathews Board of Community Health Councils of Wales

Dr Gill Richardson National Public Health Service

Dr Huw Jenkins Director of Healthcare Services for Children and Young People, Welsh Assembly Government

44

Appendix 3

Neurology and Neurodisability Core Multi-disciplinary Team

The list below identifies key members of the multi-disciplinary team whose skills may be called on as and when required to support the care of children and young people. These will not all be based in one place. The list is shown in alphabetical order.

ALAC/Rehab Engineering input•

Audiologist•

Clinical Psychologist •

Paediatric Dietitian•

Educational Psychologist•

Genetics Team •

Orthopaedic Surgeon•

Paediatric Orthotics •

Learning Disability Consultant•

Neuro-psychiatrist•

Neuro-psychologist•

Neuro-rehabilitation paediatrician•

Neuro-radiologist•

Neuro-rehabilitation staff•

Paediatric Anaesthetist •

Paediatric Dentist •

Paediatric Intensivist •

Paediatric Occupational Therapist•

Paediatric Neurodisability Specialist•

Paediatric Neurologist•

Paediatric Neuro-oncologist•

Paediatric Neurosurgeon•

Paediatric Physiotherapist•

Paediatric Speech and Language Therapist•

45

Paediatric Surgeon•

Play Specialist•

Portage Worker•

Respite Team•

Social Worker•

Specialist Nurses i.e. Cardiology, Community Paediatric, Epilepsy, Learning Disability, •Stoma Care, Respiratory, Surgical, Palliative Care etc.

46

Appendix 4

Table 1: Current Outreach Sessions

Table 2: Current Neurology and Neurodisability Clinics

Cardiff Swansea Liverpool

Royal Gwent Hospital (12)Nevill Hall Hospital (12)Aberdare Hospital (28)Royal Glamorgan Hospital (15)Princess of Wales Hospital (12)

West Wales Hospital (8)Bronglais Hospital (8)Withybush Hospital (8)Neath Port Talbot Hospital (12)Prince Philip Hospital (12)

Wrexham Maelor Hospital (6) Glan Clwyd Hospital (7)Ysbyty Gwynedd (7)

Cardiff Swansea Liverpool RJAH

6 general/ specialist neurology clinic/ week

1 general/ specialist neurology clinics/week1 complex neurodisability clinic/week

No dedicated clinics (~20 Welsh children seen in RLCH)

No dedicated clinics (Welsh children equate to 1 neurology/epilepsy clinic/week

47

Table 3: Current Neuromuscular Clinics

Cardiff Swansea Liverpool RJAH

Monthly neuromuscular clinic Ad hoc joint respiratory support clinicOutreach clinics in Nevill Hall (4/yr) Aberdare (8/yr)

Monthly neuromuscular clinicJoint Spinal clinic (6/yr)Joint respiratory support clinic (4/yr)Outreach clinics in Withybush (4/yr) Royal Glamorgan (6/yr)

Weekly new patient clinicWeekly follow-up clinicJoint spinal clinic (4yr/)Joint orthopaedic clinic (4/yr)Respiratory support clinic run in parallel to follow up clinicNo outreach clinics in Wales

Weekly neuromuscular clinicSeparate adult and paediatric services with integrated transitional careMonthly DMD steroid clinic3-Monthly joint scoliosis clinic3-monthly joint cardiac clinicMonthly joint orthopaedic clinic3/4 Paediatric neurology clinics per month with epilepsy nurse specialist Co-ordinated respiratory support clinic organised by respiratory physiciansNo outreach clinics in Wales

Approximately 20% of the RJAH muscle clinic patients are from Wales. The percentage of the Liverpool muscle clinic population from Wales is unknown.

48

Appendix 5

Paediatric Neurosurgical Multi-disciplinary TeamPaediatric Neurosurgeon•

Paediatric Intensivist•

Paediatric Anaesthetist •

Neuro-radiologist•

Neurosurgical nursing and therapy staff•

Neuro Rehabilitation staff•

Paediatric Neurologist•

Paediatric Neuro-oncologist•

49

Appendix 6Designated lead Neurosurgical centres will have the following:

Neurosurgery with appropriate paediatric training/experience•

Paediatric Neurology•

Paediatric Anaesthesia•

Paediatric Intensive Care•

Neuro-radiology with appropriate paediatric training/experience•

Neuro-pathology with appropriate paediatric training/experience•

Paediatric subspecialties including Oncology, Neurology, Endocrinology, Ophthalmology•

Paediatric Nurses (with a cohort of staff with paediatric neuro-surgical nursing •training/experience)

A multidisciplinary neuro-rehabilitation team with specialist training:•

Neuro-rehab Paediatrician -

Paediatric Physiotherapist -

Paediatric Occupational Therapist -

Paediatric Speech and Language Therapist -

Paediatric Dietitian -

Clinical Psychologist -

ALAC/Rehab Engineering input -

Social Worker -

Orthotist -

Play Specialist -

Elements of these roles must be reflected in the acute, community and respite provision for children and young people.

50

Sections 76, 77 and 81 of the Government of Wales Act 2006 provide a basis for our equality work. The National Assembly for Wales is under statutory duties to aim to ensure that its business is conducted, and its functions exercised, with due regard to the principle that there should be equality of opportunity for all people. As the majority of the National Assembly’s functions have been delegated to the First Minister and are carried out by the Welsh Assembly Government, in practical terms it is the Welsh Assembly Government which has principal responsibility for fulfilling these equality duties. This is further underpinned by UK Equality legislation, covering equality and human rights.

51

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