NEUROSURGICAL DEBATE

British Paediatric Neurosurgery – A time for change?

PAUL CHUMAS1, IAN POPLE1, CONOR MALLUCCI1, JAMES STEERS2 &

DARACH CRIMMINS3

1Present and Past Chairmen of the British Paediatric Neurosurgical Group,2Past President of the Society of British Neurological

Surgeons, and 3BPNG audit collator

Key words: Paediatric, Neurosurgery, Kennedy Report.

Paediatric Neurosurgery in the UK and Eire has

progressively evolved as a sub-specialty over the last 20

years. The British Paediatric Neurosurgery Group was

founded in 1988 and formally recognized by the

Society of British Neurological Surgeons (SBNS), ‘to

promote and encourage the development of paediatric

neurosurgery’. In 1998 the SBNS published Safe

Paediatric Neurosurgery1 which set out the minimum

requirements for paediatric neurosurgery. In response

to the Kennedy Report2 and the Report of the

Paediatric Forum of the Royal College of Surgeons

of England (Children’s Surgery – A First Class Service)3

the Council of the SBNS convened a short life

working party to review and update this document

resulting in Safe Paediatric Neurosurgery 2001.4

Seven years have now elapsed since the publication

of Safe Paediatric Neurosurgery 2001 and a number of

its recommendations remain unfulfilled. Addition-

ally, over the intervening period additional new

pressures have come to bear on the delivery of small

volume, high risk, high cost specialties which raise

questions on how best to cost-effectively deliver these

services in the future. The lack of a national strategy

for paediatric neurosurgery coupled with financial

concerns over the viability of local paediatric

neurosurgical services, concerns over the volume of

work required for training and revalidation, the effect

of the European Working Time Regulation (EWTR)

on man-power issues and the need for equity of

access to a high quality service lead to the conclusion

that it is now timely to reconsider how best to offer

paediatric neurosurgical services within a national

framework.

The rationalization of specialist surgical services is

not new and not limited to the UK. In France new

legislation (Cross H, Great Ormond Street Hospital,

London, personal communication, March 2007)

outlines the minimum requirements for a unit under-

taking paediatric neurosurgery with a view to restrict-

ing paediatric neurosurgical services to a limited

number of units.5 In Scotland, the neuroscience

group contributing to the Kerr Report6 suggested that

there should be a single paediatric neurosurgical

centre for Scotland and that it should be on the same

site as an adult neurosurgical service. This continues

to be the view of the Neuroscience Implementation

Group whose work is still in progress and no formal

decision has been reached. When practicable, the

colocation of paediatric and adult neurosurgical

services has many obvious advantages – not least

being the cross fertilization of ideas and the best use of

scarce resources and personnel.

Paediatric cardiac surgery and paediatric oncology

in the UK are presently going through similar

attempts to rationalize services. In fact, the Paediatric

and Congenital Cardiac Services Review (PCCSR)

recommended that there be larger units and a

consensus statement is in preparation. Interestingly,

approximately the same number of paediatric cardiac

procedures are performed each year (4000) as in

paediatric neurosurgery. The expected recommenda-

tion is that there should be a significant reduction in

the number of centres – with the new centres being

manned by 4 or 5 surgeons. The appointment of

more surgeons to the current centres is not con-

sidered a viable solution ‘as the number of cases in

the UK is relatively fixed and each surgeon needs

a minimum level of operating to maintain their

skills’.7

Manpower and volume of work

There is increasing evidence that to achieve best

results in clinical practice, patients should be treated

Correspondence: Mr Conor Mallucci, The Walton Centre for Neurology & Neurosurgery, Lower Lane, Fazakerley, Liverpool L9 7LJ, UK.

E-mail: mallucci@ntlworld.com

British Journal of Neurosurgery, December 2008; 22(6): 719–728

ISSN 0268-8697 print/ISSN 1360-046X online ª The Neurosurgical Foundation

DOI: 10.1080/02688690802505498

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by multidisciplinary specialist teams working in high

volume units with access to the appropriate diag-

nostic and treatment facilities.6–8 There is no data

collected of the number of paediatric neurosurgical

operations carried out each year within the UK or

Eire. To redress this, the BPNG has recently set up a

simple data collection program.

The Specialist Advisory Committee for Neurosur-

gery (SAC) was used to collect operative data but

with the cessation of SAC Inspections in 2004, this is

no longer collected. Data from the SAC (Powell M.

Reported Paediatric Caseloads to Specialist Advisory

Committee for Neurosurgery: 1998–2004 – personal

communication, London, 2007) collected between

2000 and 2004, shows that paediatric neurosurgical

procedures account for approximately 10% of all

neurosurgical procedures performed in the UK

(4,706 paediatric and 47,722 adult cases). Figures

for neurosurgical centres show that the number of

cases performed per year varies from under 50 to

approximately 600 a year. For planning purposes a

figure of 75–85 paediatric neurosurgical operations

per million of population would be a reasonable

estimate (although it should be noted that significant

regional variations exist).

Figures from the DOH show that for the year

2004/5 there were 7031 Finished Consultant Epi-

sodes (FCEs) in England for neurosurgical patients

under 16 years of age (4605 patients and 6659

admissions).7 The number of FCEs has increased by

6% as compared with 1995/6 data. It is estimated

that 70% of this work is ‘urgent’ being admitted

acutely with the remaining 30% admitted electively.

Presently, the majority of this work is carried out

in 20 units (15 in England, two in Scotland, one

in Wales, one in Northern Ireland and one in Eire).

In addition, a small amount of emergency surgery

(mainly head injuries and blocked shunts) is also

carried out at the other (17) neurosurgical centers

around the UK. Table I shows data for those units

with a declared interest in paediatric neurosurgery

with the number of procedures performed coming

from the BPNG audit or (if no suitable data was

supplied) from the last SAC visit.

Safe Paediatric Neurosurgery 2001 recommended

that units undertaking paediatric neurosurgery

should be staffed by at least two neurosurgeons with

a specialist interest in paediatrics. It also recom-

mended that prior to appointment to a paediatric

neurosurgical post candidates should have under-

taken a Fellowship in paediatric neurosurgery. Over

recent years, the number of neurosurgeons appointed

to consultant posts ‘with a specialist interest in

paediatrics’ has increased dramatically although the

requirement for candidates to have undertaken a

Fellowship has often been ignored. There are now

over 50 consultant neurosurgeons registered with the

BPNG, six of whom are in full-time paediatric

neurosurgical posts (four at The Hospital for Sick

Children, Great Ormond Street and two at the

Birmingham Children’s Hospital). These, along with

Liverpool are the only three units in the UK or Eire

presently offering a separate paediatric neurosurgical

on-call rota. In the remaining units the emergency

care of paediatric patients is managed through the

adult on-call system with paediatric cases being

transferred to the care of a paediatric neurosurgeon

on the next working day with second on-call

paediatric cover being provided for complex cases.

Not surprisingly, with the small volume of

paediatric work being undertaken annually in most

units, many neurosurgeons ‘with a special interest in

paediatrics’ spend most of their time managing

adult patients. Conversely, because most paediatric

neurosurgical cases are admitted acutely, a

significant proportion of children will have their

initial care delivered by ‘emergency-competent’ adult

neurosurgeons.

The benefit of combined adult and paediatric

neurosurgical practice is more positively illustrated

by the involvement of adult neurosurgeons in the

treatment of children with conditions more com-

monly seen in adult practice – for example pituitary

tumours, acoustic neuromas, cerebral aneurysms

etc – and with paediatric neurosurgeons assisting

with the management of adult patients with difficult

hydrocephalus, dysraphic spines etc.

Training and continuing medical development

Training in all the surgical specialties is in a marked

state of flux with the introduction of Modernizing

Medical Careers (MMC) and the move of the

statutory powers for organizing training from the

Medical Royal Colleges to the Postgraduate Medical

Education and Training Board (PMETB). The

BPNG has been fully involved in the preparation of

the paediatric component of the neurosurgical

curriculum approved by PMETB.9 In the general

neurosurgical curriculum there is a mandatory 6

month period of training in paediatric neurosurgery

and the BPNG has advised that this should be in a

unit performing a minimum of 250 operative

procedures per year. This will exclude many units

presently undertaking paediatric neurosurgery from

being training units. In these centres it will be

necessary for the trainees to either be seconded to a

larger paediatric unit or to undertake their paediatric

attachment more than once. The curriculum has

been devised to ensure that by CCT, neurosurgical

trainees will have a good ‘knowledge base’ of

paediatric neurosurgery and will be ‘emergency-

competent’ to manage paediatric neurosurgical

emergencies.

Embedded within the neurosurgical curriculum is

the potential for one year in a sub-specialty Fellow-

ship. The BPNG has recommended that trainees

wishing to undertake a paediatric neurosurgical

specialty Fellowship should do so in a unit offering

exposure to all of the sub-specialty aspects of

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paediatric neurosurgery and in which a minimum of

500 operations are performed each year. Currently

such accredited fellowships are only offered at Great

Ormond St, Birmingham and Liverpool.

There is a concern that future consultants may have

less surgical experience by the time of appointment as

a result of the European Working Time Regulation

(EWTR) – with the present limit of 58 hours per

working week reducing to 48 hours in 2009. ‘New

consultants’ will be emergency-competent for both

adult and paediatric neurosurgery and will spend the

majority of their ‘scheduled time’ undertaking aspects

of their chosen sub-specialty. To this end they will

likely work in teams enabling mentoring and continu-

ing development through experience. These changes

will mean that future consultant appointments will

only be possible to units with sufficient workload to

justify a full-time or near full-time appointment in that

particular sub-specialty.

At present the only formal assessment of continu-

ing medical development is the appraisal process.

However, relicensure and recertification are due to

be introduced in 2010 and assessed every 5 years.10

The details for both processes has yet to be defined

but outcome data, an assessment of knowledge and

evidence of continuing professional development

(CPD) will be required to recertify as a specialist

paediatric neurosurgeon. Recommendation 186 of

the Kennedy Report2 states:

All surgeons who operate on children, including

those who also operate on adults, must undergo

training in the care of children and obtain a

recognised professional qualification in the care of

children. As a matter of priority, the GMC, the

body responsible for the revalidation of doctors,

should agree with the Royal College of Surgeons of

England the appropriate number and range of

procedures which surgeons who operate on chil-

dren must undertake in order to retain their

validation.

In the USA revalidation is already established and

occurs every 10 years. A paediatric neurosurgeon has

to perform 125 cases per year or three-quarters

of their annual operative workload must be on

children.11 Whatever the criteria used in the UK, it

would seem likely that it will be more difficult for

those surgeons operating in small volume hospitals to

recertify in the future, and that credentialing might

be appropriate for the most specialist procedures.

Audit

The BPNG has established both Audit and Research

Committees. Current audit is of operative workload.

Presently data relating to paediatric neurosurgical

mortality and morbidity are only discussed at in-

house presentations. The only annual audit relates to

TABLE I. Twenty neurosurgical units in UK and Ireland treat children routinely

Region Unit

Population for

paediatric

service

Operative

procedures

per year

(children

516 years old)

Tumours/

year

Number of

consultants

with SI in

paediatrics

Neurosurgery

performed in

children’s

hospital

Scotland Glasgow 3.1 197 10 2 no***

Edinburgh 2 171* 12.5 2 yes

Republic of Ireland Dublin 4.2 224 N/A 2 no***

Northern Ireland Belfast 1.7 153 7 2 Yes

Wales Cardiff 2.9 152 10.5 3 children’s on site

North-East Newcastle 3.8 200* 23.5 2 no***

Yorkshire Leeds 2.7 223 21.5 3 children’s on site

Hull 1.2 27 1 no

Sheffield 2.2 152* 13 2 yes

Trent Nottingham 3.2 245 22.5 3 children’s on site

North-West Manchester 4 335 28 3 yes

Liverpool 4 501 29 4 yes

Midlands Birmingham 5.6 451 31.5 4 yes

East Anglia Cambridge 2.4 218 22 2 children’s on site

Thames Valley Oxford 2.5 284 18 2 yes

South-West Bristol 3.8 382 23.5 3 yes

South Southampton 3 141 14.5 2 children’s on site

North Thames GOSH 9.5 724 47.5 4 yes

South Thames King’s College 4.9 221 29.5 combined 2 children’s on site

St. George’s 2.5 180 2 children’s on site

Totals 20 69.2{ 358** 50

{Total of population is falsely high because of the overlap between reported catchments of English Units at Safe Neurosurgery 2004.

Scotland, Wales, Northern Ireland (Census 2001) and Irish Republic (Census 2006) populations are accurate.

*SAC data used as no reliable data supplied to BPNG audit.

**UKCCSG data for new tumours/year.

***Units where paediatric general surgeons still undertake surgery for hydrocephalus and spina bifida.

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craniofacial surgery and is organized by the National

Specialist Commissioning Group (NSCAG). Unfor-

tunately non-designated units are not invited to

attend this audit.

The UK Shunt Registry collects data nationally for

both adult and paediatric patients requiring treat-

ment for hydrocephalus. A relatively modest im-

provement in funding would allow more rigorous

control of data collection and further strengthen the

value of this potentially powerful database.

The BPNG recognizes that the public and the

Government expect the collection of audit data.

There is a will within the BPNG for this but further

support is required to enable the collection of

impartial, standardized data. To this end, a centrally

staffed and funded data collection facility to capture

mortality and morbidity figures and co-ordinate trials

is desirable. Data collection at this level would allow

comparison of outcomes similar to that employed by

the Paediatric Intensive Care Audit Network (PICA-

Net) reviewing PICU data.

Research

For this article a brief review of research publications

in the last 5 years on Medline was undertaken

looking for specific keywords (‘neurosurgery’, ‘pae-

diatric neurosurgery’, ‘neonate’, ‘child’, and ‘adoles-

cent’) and author search (consultants with known

interest in paediatrics in each unit). The results

confirm that virtually all the paediatric neurosurgical

research undertaken in the UK emanates from the

larger units (Figure 1). This dominance by larger

centres is mirrored internationally with units such as

Paris and Toronto traditionally having a very high

publication rate (albeit offering single institution

studies).

Because of the relative rarity of most conditions

treated by paediatric neurosurgeons there is virtually

no Class 1 evidence on which to base management.

In paediatric neuro-oncology, an attempt has been

made to recruit all patients with CNS tumours into

trials (or observational studies if there is no new

treatment strategy to investigate). This practice

should be the standard to which all of paediatric

neurosurgery aspires.

Currently academic paediatric neurosurgery is

represented by a single Chair at Great Ormond

Street Hospital. For research into Paediatric Neuro-

surgery in the UK to expand a number of develop-

ments are required including the development of

clinical network groups, encouragement of participa-

tion in national and international multi-centre

studies, the collection of national audit data and

enhanced links with Academic Neurosurgery. In

particular there is a need for collaboration with

University groups studying head injury, tumour

biology, CSF dynamics, functional neuroradiology,

neuro-modulation and genetics.

Unit infrastructure

The resource and estate infrastructure of paediatric

neurosurgical units in the UK & Eire varies

considerably – ranging from being situated in

stand-alone single specialty hospitals to being in-

dependent paediatric neurosurgical units situated

within large children’s hospitals (Table I). This

means that children and their parents experience

considerable variation across the UK when referred

for a paediatric neurosurgical opinion.

Now considered suboptimal, some children are

still seen in adult out-patients in mixed clinics. The

siting of in-patient beds varies from pure paediatric

neuroscience wards with neurologically trained

nurses to beds on general paediatric medical or

surgical wards. Access to paediatric intensive care

beds remains a problem for all paediatric specialties

and, in contrast to most adult neurosurgical services,

there are no dedicated paediatric neurosurgical

intensive cares or neuro-intensivists. Some paediatric

neurosurgical patients are still treated in designated

paediatric beds in adult ITUs. However the greatest

limitation is access to high dependency beds (HDU).

As a result patients requiring an HDU bed, often

only requiring close post-operative monitoring, have

to compete for PICU beds and thus may have their

surgery cancelled.

Paediatric neurosurgical patients should be anaes-

thetized by a paediatric anaesthetist on a paediatric

list and operated on in a theatre equipped and staffed

for the delivery of modern paediatric surgery. At

present, there is often a degree of compromise in

both the children’s hospital setting and the adult

neurosurgical setting. In the former, not all cases are

operated on in a designated neurosurgical theatre or

with trained neurosurgical scrub staff. In the latter,

FIG. 1. Comparing the number of operations per year in each unit

(SAC data, 2000–2004. Powell M. Reported Paediatric Caseloads

to Specialist Advisory Committee for Neurosurgery: 1998–2004 –

personal communication, London, 2007) vs. publications in the

last 5 years (Medline May 2002 to end April 2007), the

Spearman’s correlation coefficient is 0.804 (p50.0001).

722 P. Chumas et al.

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the volume of work and the fact that so little of it can

be planned means that the theatre lists are often

mixed with adult patients and finding an appropriate

anaesthetist can be problematic.

Where paediatric neurosurgical care differs most

from adult neurosurgery is the child’s need for support

from the associated paediatric specialties. Access to a

raft of other disciplines (paediatric anaesthesia, PICU,

paediatric neurology, neuroradiology, paediatric on-

cology, ophthalmology, endocrinology, ENT, ortho-

paedics, maxillo-facial surgery, plastic surgery,

paediatric general surgery, paediatric urology, genet-

ics, neurophysiology, physiotherapy, occupational

therapy, speech therapy, educational and paediatric

neuropyschology, paediatric neuro-rehabilitation ser-

vices etc) is required. General paediatric medical and

non-medical care, in and out of hours, needs to be

immediately to hand for the safe delivery of paediatric

neurosurgery. Paediatric neurosurgery is therefore an

inherently expensive discipline as it is both labour and

technology intensive.

Type of work

In order to better plan paediatric neurosurgical

services, it is necessary to have an understanding of

the more common conditions that require treatment

and how these requirements are presently met.

Hydrocephalus

Historically, many children with hydrocephalus

(especially those in the neonatal period) were

operated upon by general paediatric surgeons rather

than neurosurgeons. Today, this practice is consid-

ered to be sub-optimal and has largely stopped –

although not completely so (Table I). Hydrocephalus

continues to be the most frequent condition treated

by paediatric neurosurgeons and it is estimated

that 50% of paediatric neurosurgery relates to

the management of hydrocephalus. Studies from

America have shown that the risk of shunt blockage,

infection and death are decreased in high-volume as

compared to low-volume centres.12

The majority of cases of hydrocephalus, either

newly diagnosed or at the time of a shunt malfunc-

tion, present acutely. It is still the case that each year

a number of children die from hydrocephalus and

these are usually patients with shunt malfunctions in

whom shunt revision surgery is not carried out

sufficiently quickly. The risk of death quoted for

each episode of shunt malfunction is 1%.13 The

emergency treatment of hydrocephalus is considered

to be a core competency for all neurosurgeons

irrespective of their sub-specialty interest and chil-

dren in need of life saving emergency surgery should

be able to access this in the closest neurosurgical

service, be that adult or paediatric.

In patients with triventricular hydrocephalus,

endoscopic third ventriculostomy may be an alter-

native treatment option. Although a sound knowl-

edge of this technique is expected of the trainees, this

is not considered a core skill. Although many ‘adult

neurosurgeons’ are confident performing this proce-

dure, this treatment option is often unavailable out of

hours within the present on-call system.

Craniofacial Services

Presently, there are four designated Supra-Regional

Craniofacial Services in England which are centrally

funded through NSCAG – Great Ormond Street,

Birmingham, Oxford and Liverpool. There is also

one service in Scotland (Glasgow), and one in Eire

(Dublin), with none being present in Wales or

Northern Ireland. In Safe Paediatric Neurosurgery

2001 it was recommended that all syndromic

craniofacial cases should be referred to a Supra-

Regional Centre but that non-syndromic cases could

be undertaken in other paediatric neurosurgical

centres providing that a suitably trained multi-

disciplinary team was available (including plastic

surgery, maxillofacial surgery, genetics, ophthalmol-

ogy, ENT, speech therapy, psychology etc). Apart

from the supra-regional centres, craniofacial surgery

is also undertaken in at least 5 other units within the

UK.

Approximately 400 craniofacial cases are operated

on annually in the UK – with only about 30

syndromic cases newly diagnosed each year. This is

in keeping with the epidemiological figures quoted

for Western European countries – with a prevalence

of 1 in 2500 births14 with non-syndromic cases

making up 85–90% of cases. The Supra-regional

centres’ main workload also therefore consists

of dealing largely with non-syndromic cases.

The importance of these Supra-regional centres in

the development of craniofacial surgery, both

within the UK and abroad cannot be overestimated.

However, the geographical siting of the Centres

(a reflection of the historical development of the

services) is not ideal.

One obvious benefit from the creation of the

supra-regional craniofacial services has been the

development of a standardized national database

and centralized audit. This is the only subspecialty in

paediatric neurosurgery where comparative morbid-

ity and mortality data is available – although it is

unfortunate that the non-designated units have been

excluded from this process.

CNS Tumours

Data from the Children’s Cancer and Leukaemia

Group (CCLG formerly known as the UK Chil-

dren’s Cancer Study Group UKCCSG) indicate that

there are approximately 400 new tumours diagnosed

in the UK and Eire each year. This overall figure

disguises the fact that each individual type of tumour

(or often more importantly site of the tumour) is

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relatively rare. As can be seen from Table II, for

many types of paediatric CNS tumours less than 50

will be operated on across the whole of the UK and

Eire each year. While most cases present relatively

acutely (usually as a result of hydrocephalus) it is rare

for emergency surgery to be required and when

necessary this is usually to relieve the hydrocephalus

rather than remove the tumour – the latter surgery

normally being undertaken on the next available

routine operating list. All paediatric neuro-oncology

cases require multi-disciplinary input (oncology,

radiotherapy, neurology, ophthalmology, speech

therapy, occupational therapy, physiotherapy, social

work, psychology etc) and most children with a brain

tumour will be eligible for entry into a CCLG trial.

For virtually all paediatric CNS tumours the princi-

ple requirement of the surgeon is to try and safely

achieve complete or near complete resection as this

almost always has a strong bearing on survival.

In contrast to the limited number of centres which

undertake any form of craniofacial work, and despite

tumours representing a similar volume of work,

paediatric CNS tumours are operated on in all 20

centres in the UK and Eire. A number of older

children continue to be operated on by adult

neurosurgeons in these centres or even in those

centres that are not routinely undertaking paediatric

work. In most centres this means that each surgeon is

carrying out 5–10 paediatric tumour cases per year

and at present no morbidity or mortality data is

collected nationally. Although there is no evidence

from the UK, observational studies from the United

States have shown that lower mortality and morbidity

rates are achieved when paediatric brain tumours are

operated on by ‘high-volume neurosurgeons’ in ‘high-

volume centres.15,16 A study from Ontario showed

that children treated for medulloblastoma at the

Hospital for Sick Children in Toronto had a 5-year

relapse free survival rate of 65% compared to 44% for

those treated at other smaller centres (range 25–60%).

Cases treated outside Toronto had a nearly 2-fold

increased relative risk of death or recurrence.

Figure 2 shows the percentage of infants with

incomplete resection at surgery for ependymoma and

this correlates strongly with poor outcome. The

results from the UK are similar to those from

Germany, where paediatric neurosurgery is only

now just starting to be recognized as a sub-specialty.

Studies in America have previously shown that

children operated on by paediatric neurosurgeons

fair better than those operated on by their adult

colleagues.17 In contrast, the surgical resection rate

for infants with ependymoma in France and Italy is

significantly better than in the UK or Germany. The

best surgical resection rates are seen in the USA and

in particular at St Jude’s, which is well recognized as

a ‘high volume’ institution for treatment of paediatric

brain tumours.

If a restructuring of paediatric neurosurgical

oncological services in the UK is to be considered TA

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then some form of validated central comparative

audit process recording throughput, mortality and

morbidity, along the lines of that for craniofacial

surgery, is urgently required in discussion with the

paediatric oncologists.

Head injuries

Reliable information for children admitted to in-

tensive care units is now readily available and is

collected and analysed by PICANet.20 In the UK 5.6

children (less than 14 years old) per 100,000

population per year are admitted to intensive care

units with traumatic brain injuries (TBI). This

equates to approximately 500 children being ad-

mitted each year with TBI to a PICU or adult ITU in

the UK and Eire. Of these approximately 20%

require emergency surgery on the day of admission

(and a further 10% have delayed surgery).21 Seventy

per cent of children require transfer to the Regional

Neurosurgical Unit and although these children

receive urgent A&E department care within (on

average) 40 minutes of injury, in over 50% of those

requiring emergency haematoma removal it is not

possible to transfer them to a neurosurgical unit

within the 4 hours suggested in most guidelines. At

present the estimated average time for resuscitation

and investigation at the referring District General

Hospital is 2 hours, which means that the limit on

ambulance journey time to a neurosurgical depart-

ment in order to deliver patients within the 4 hour

time limit is estimated to be 45 to 75 minutes.22

Studies from the Paediatric Intensive Care Society

show that only 59% of patients with a Glasgow Coma

Score of 8 or less undergo formal intracranial

pressure monitoring. This group also reported wide

variation between centres in all aspects of the

management of severe head injury in children. Of

particular concern is that contrary to published

guidelines, moderate to severe hyperventilation is

frequently being used without monitoring for cere-

bral ischemia. A conclusion from a recent publica-

tion states: ‘There is an urgent need for greater

standardization of practice across UK centres admit-

ting children with severe TBI’.21 Furthermore, the

fact that children are still admitted in some centres to

an adult rather than paediatric ITU remains a cause

for concern.

The PICANet data has shown that paediatric head

injury requiring intensive care admission is relatively

rare, which may explain the differences in care across

the country. With the present limitations in achieving

acceptable transfer times it will be necessary for some

patients to have their emergency surgery at their

regional neurosurgical centre in order to try and

achieve evacuation of an intracranial haematoma

within the 4-hour guideline. The role of paediatric

anaesthesia in the transfer of these patients also needs

to be considered. The extra delay associated with the

use of retrieval teams22 is unacceptable in the

management of acute neurosurgical emergencies.

Yet the decreasing pool of anesthetists in District

General Hospitals to undertake the transfer of

emergency paediatric cases is also becoming a

limiting factor and needs to be addressed. The

increasing use of air-ambulances may assist in this

process in the future.

Spinal conditions

Congenital spinal problems can be broadly divided

into those that occur in the lumbosacral region

(dysraphic spectrum) and those that occur at the

cranio-cervical junction. Open ‘spina bifida’ de-

creased significantly over the last 2 decades but is

now showing evidence of increasing again. As with

the treatment of hydrocephalus, open myelomenin-

goceles are still occasionally closed by general

paediatric surgeons.

More common now are the closed dysraphic states

that result in tethering of the spinal cord – e.g., fatty

filum, lipomyelomeningocele, diastatomyelia etc.

FIG. 2. Percentage incomplete resection of ependymoma in infants (courtesy of D. Eric Bouffet, Hospital for Sick Children, Toronto).19

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While in the USA prophylactic surgery to de-tether

the cord is regularly undertaken, surgery in Europe is

often deferred until the patient becomes sympto-

matic.23 However, even within the UK there is

considerable variation in practice and it is this group

of patients that best epitomizes the need for

coordinated audit and research within paediatric

neurosurgery. Certainly these children need to have

their care coordinated through a service which

includes access to paediatric urology and. urody-

namics, paediatric orthopaedic and spinal services.

Conditions affecting the cranio-cervical junction in

children are even rarer with the Chiari I hindbrain

abnormality being the only relatively common con-

dition. Cases of instability associated with conditions

like Down’s syndrome and the mucopolysachari-

doses are technically difficult to treat but fortunately

only a handful of cases are seen each year in the UK.

The need for expertise to be developed in a limited

number of centres to treat these rare conditions is

self-evident.

Epilepsy and Functional Neurosurgery

Surgery for epilepsy can dramatically improve the

quality of life for childhood sufferers and for their

parents/carers. Despite this, the number of eligible

children who are referred to an epilepsy surgery

programme remains a fraction of those whom might

benefit. The actual number of surgical epilepsy

operations undertaken each year in the UK is

difficult to determine. A verbal survey in 2005

indicated that 11 centres were offering such surgery

with 50 cases being operated upon within 2 centres in

London and the other 30 cases being performed

between the remaining nine centres (Cross H, Great

Ormond Street Hospital, London, personal commu-

nication, March 2007). More recent figures show

that between 150 and 200 cases are performed each

year – although it likely that part of this increase is

due to the increased use of Vagal Nerve Stimulators

for intractable epilepsy in patients for whom more

definitive cranial surgery is not feasible.

The investigative work-up for consideration of

epilepsy surgery is time consuming and arduous.

Apart from imaging (MRI, functional MRI, PET,

SPECT), these patients usually require video tele-

metry, neuropsychological assessment and some-

times a WADA test. In addition some patients will

need to progress to invasive monitoring to determine

the site of origin of their seizures. Invasive monitor-

ing of this kind in children is presently only

performed frequently in two units – both located in

London.

‘Functional neurosurgery’ for children is largely

limited to:

(1) deep brain stimulation (usually for dystonia) of

which there are very few paediatric cases

performed each year in the UK.

(2) spasticity treatment (usually for cerebral palsy)

where there is almost certainly a significant

unmet need. As with most aspects of paediatric

neurosurgery, the management of spasticity

needs to be multidisciplinary. The neurosurgical

input to spasticity management consists of either

the implantation of a Baclofen pump or a highly

selective dorsal rhizotomy. Access to these

treatments varies considerably across the UK.

Miscellaneous

The most important aspect of this miscellaneous

group of conditions requiring paediatric neurosur-

gery is the frequent need to involve other specialists

in their care. For example, intracranial sepsis

(abscess or empyema) remains a relatively common

condition for paediatric neurosurgeons and the

assistance of the ENT surgeons is frequently

required.

Intracranial bleeds from aneurysms or AVMs can

be devastating and their treatment should be

discussed within the adult neurovascular MDT to

see if surgery, endovascular treatment or radio-

surgery should be considered. The need for network-

ing across adult neurovascular and neuroradiology

services is vital in this particular subspecialty where

even in the largest paediatric neurosurgical units in

the world (Paris and Toronto), there is an ongoing

dependence on adult expertise. However, the man-

agement of paediatric ‘strokes’ is a very different

matter where the adult neurovascular MDT is likely

to have very little experience and where conditions

like childhood Moya Moya have a very different

prognosis and treatment requirements from adult

Moya Moya. The rarity of these cases argues strongly

for their management being coordinated in a limited

number of centres.

Antenatal Screening and Neonatal Services

Neonatal neurosurgical problems are largely con-

fined to the treatment of hydrocephalus and the

closure of a myelomeningoceles – both of which

require urgent rather than emergency care. None-

theless any restructuring of Paediatric Neurosurgical

services needs to be linked to and coordinated with

the availability of neonatal services.

An area of growing importance is that of antenatal

screening increasingly involving the paediatric

neurosurgeon in discussions about diagnosis and

possible prognosis. A national network of multi-

disciplinary antenatal clinics (attended by obstetri-

cians, radiologists, paediatric neurosurgeons and

neurologists, neonatologists and geneticists) needs

to be developed and guidelines issued. Currently, an

ad hoc system has developed across the UK and

interested parties such as the Association of Spina

Bifida and Hydrocephalus (ASBAH) report a huge

variability in the standard of service offered.

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Provision of adolescent and young adult services

The transfer of paediatric neurosurgical patients to

the adult services varies considerably across the UK.

Any restructuring of paediatric neurosurgical services

should take the opportunity to develop a national

strategy for this patient population. This ‘new

service’ would need to be situated in the ‘adult’

neurosurgical department but with the provision of

age-appropriate facilities and special services. The

delivery of cancer services for adolescents and young

adults (16–25) is already under review by the CCLG

and discussions with this group will be required in

order to co-ordinate appropriate care.

The development of this service in the regional

‘adult’ neurosurgical centres would not only fulfil a

much required need for these patients but would also

give the opportunity for regular interaction between

the adult and paediatric neurosurgical teams.

Recommendations of the BPNG

The future of Paediatric Neurosurgery in the UK was

discussed by the membership of the BPNG at their

annual meeting (Manchester, 13–14 March 2008).

After much debate the following were agreed:

(1) The size of a unit (determined by operative

numbers) required for training (both for core

CCT training and for a Fellowship in paediatric

neurosurgery) was re-endorsed.

(2) Currently it is only possible to appear on the

Specialist Register as a Neurosurgeon with a

subspecialty interest in Paediatric Neurosur-

gery. There is no regulatory programme of

training for paediatric neurosurgery. This in the

future would require a process in keeping with

the Kennedy recommendations and include a 1

year Fellowship, a knowledge-based assessment

and would be a pre-requisite for a consultant

post in Paediatric Neurosurgery in the UK. It

should be the role of the external College

assessor to ensure that only suitably trained

candidates are appointed to Paediatric Neuro-

surgical Consultant posts and such assessors

should be members of the BPNG.

(3) The General Medical Council will oversee the

process of revalidation. It will consist of

relicensure – essentially a more robust form of

appraisal that will incorporate a multi source

feedback (MSF) and recertification, which will

have three elements, Outcome data, an assess-

ment of knowledge and evidence of continuing

professional development (CPD). These com-

ponents are currently being developed within

the framework of the Academy of Medical

Royal Colleges in conjunction with the GMC

and Health administrations. Surgeons through

the Forum of Surgery have been given the

opportunity to develop their process of recerti-

fication in which the Surgical Specialty Associa-

tions will play a major part. The base level for

recertification will be the CCT, but it is clear

that during a surgeon’s career the job will

change. The individual will have to demonstrate

continuing competency to undertake the re-

quirements of the post. If a component of the

post is to provide an on call service then the

demonstration of the competency to do this will

be as essential as the specialist competencies of

paediatric neurosurgery. For those undertaking

super specialist procedures that should only be

undertaken with special training might be

credentialed for these procedures. The BPNG

is keen to work with the SBNS to develop a

robust process of revalidation in Paediatric

Neurosurgery.

(4) It was unanimously agreed that the status quo

for the provision of paediatric neurosurgical

services will be unsustainable. In the debate on

how to manage change it was the view of the

Group that this should be by ‘evolution rather

than revolution’ and that the emphasis should

be on the demonstration of compliance with

standards of care and not solely on the volume

of work. In particularly, the Group recognized

the geographical and political constraints of

some of the devolved administrations. Genuine

concerns were also voiced over the potential

for delays in children receiving life-saving

emergency surgery as a result of any restructur-

ing of services.

(5) In order for the BPNG to construct standards,

co-ordinate audit and be involved in revalida-

tion, an office and clerical staff will be required.

As a first step a small Working Party has been

set up which will engage with the National

Specialist Commissioning Group and other

interested parties (including Paediatric Oncol-

ogy, PICU, Paediatric Neurology and patient

representatives). The SBNS is to be repre-

sented on this Group by the next President of

the Society.

Declaration of interest: The authors report no

conflicts of interest. The authors alone are respon-

sible for the content and writing of the paper.

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