Safe and Sustainable Paediatric Neurosurgical Review

1. Safe and Sustainable Paediatric Neurosurgical Review Dr Amber young Consultant paediatric Neuro-anaesthetist, Bristol

2. Standards of care: Parents taking their children to be treated in Bristol assumed that the level of care provided would be good. Their children were cared for in a `supra regional centre' designated as such by the Department of Health. They trusted the system. The story of the paediatric cardiac surgical service in Bristol is not an account of bad people. Nor of people who did not care, nor of people who wilfully harmed patients. It is an account of healthcare professionals who were victims of a combination of circumstances which owed as much to general failings in the NHS at the time. It is an account of time when there was no agreed means of assessing quality of care… no standards for evaluating performance…… confusion through the NHS as who was responsible for monitoring quality of care. It is an account in which vulnerable children were not a priority, either in Bristol or throughout the NHS. Few had any idea that there were no agreed standards of care for Paediatric Cardiac Surgery or for any other specialty. 2001

3. Children’s healthcare needs must be given higher priority in the NHS. • The healthcare needs of children are different from those of adults • Specialist care must be concentrated in a limited number of centres • All healthcare staff who treat children must have training in caring for children There must be agreed and published standards of clinical care for healthcare professionals. Hospitals which do not meet these standards should not be able to offer services within the NHS.

4. Until recently ……. there were no nationally accepted standards or structure of care for paediatric neurosurgery..

5. Paediatric Neurosurgery • Age range: neonatal to 16-18 years • 3500- 4000 operations/year, 70% emergency • More non-operated admissions • Specialised Care: high cost/ low volume • Sub-specialty interests • Multi-disciplinary teams • Varying outcomes internationally and nationally 2013

6. How did the Safe and Sustainable process for paediatric neurosurgery come about?

7. Safe Paediatric Neurosurgery SBNS Safe Paediatric Neurosurgery 2001 Carter report Kennedy Report Surgery for Children Children’s Surgery – a first class service Commissioning Safe and Sustainable Paediatric Services Paediatric Neurosurgery – a time for change Bruce Keogh Safe and Sustainable 2009 2008 2006 2007 1998 2001 2000

8. Safe Paediatric Neurosurgery(1998): …ensure that children’s care would be of highest quality, delivered by recognised Paediatric Neurosurgeons, so that children requiring neurosurgery obtain same degree of care and expertise currently available for adults. The objective of Safe Paediatric Neurosurgery (2001): …… not all recommendations in the original document have been enacted. 1998 & 2001 • If separate facilities for children unavailable, children should not be housed in adult facilities longer than required for safe neurosurgical care Neurosurgeons providing specialist paediatric neurosurgical expertise …. regular defined commitment to paediatric neurosurgery

9. National standards needed -all children can benefit from access to surgical care of consistently high quality. • NHS investment in information technology and data collection to ensure national standards for children’s surgery are objective and evidence-based. • Occasional practice unacceptable except in the treatment of life-threatening emergencies • The surgery of childhood should be concentrated in appropriately trained designated surgeons with paediatric surgical sub-specialty commitment and workload of sufficient volume to maintain competence. 2000

10. …. propose improvements to commissioning arrangements for specialised services in England. The review recommends changes to structure, and powers to ensure the commissioning process is robust and fair, is understood by all, engages patients and offers optimal value for money. Recommendation 1: National Specialised Services Commissioning Group A National Specialised Services Commissioning Group (NSSCG) should be established to coordinate specialised services commissioning and to provide a framework within which binding commissioning decisions requiring can be made. 2006

11. Recommendation 17: Designation of Specialised Services Providers: • Formally designate specific providers for specialised services based on nationally agreed sets of patient-centred, clinical, service, quality and financial criteria • Patient and public input in designation process • Activity at undesignated providers should not be funded by commissioners

12. 2006 BPNG

13. To avoid de-skilling, UK paediatric neurosurgery activity should be concentrated in major centres with large catchment populations (6–8 million) • ….enable sufficient workload to provide dedicated paediatric neurosurgery rota staffed by 4-5 neurosurgeons 2007

14. The Kennedy Report into paediatric cardiac surgery at Bristol alerted us to major concerns. Six years later recommendations not fully implemented • We need to plan better for future availability of clinical specialists and improve on-call arrangements • … use of clinical networks is a way of addressing these issues, but brings the need to work and use services differently. It is no longer possible to safely sustain this diverse and sometimes fragmented pattern of service provision. Standing still is not an option….. in moving forward, how can we promote safe and sustainable services for the future? 2008

15. ….. there is increasing evidence that to achieve best results in clinical practice, patients should be treated by multidisciplinary specialist teams in high volume units with access to the appropriate diagnostic and treatment facilities.” “…..pressure 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. … lack of a national strategy for paediatric neurosurgery coupled with financial concerns over the viability of local paediatric neurosurgical services, concerns over volume of work required for training and revalidation and need for equity of access to a high quality service …… …now timely to reconsider how best to offer paediatric neurosurgical services within a national framework.……”

17. 2009 “Safe, sustainable and world class. Not ordinary, OK or just good enough. Children and young people who need surgery must have excellent care.” “….. canvas opinions of professional bodies, patients, families, to weigh evidence for different views of service delivery, develop proposals to deliver high quality and sustainable services in the future”

18. The review aimed to deliver a national service that: • Agreed set of national standards/ model of care to ensure best care • Balance: convenient treatment and specialist high quality surgery • Expert workforce • Specialist neurosurgery centres • Specialised support services

19. Structure • Steering Group: • Chair: Paul Chumas, • Members: commissioners, clinicians (neurology, ITU, anaesthetics, oncology) • Standards Writing Group: • Chair: Ian Pople • Neurosurgeons, anaesthesia, commissioners , statisticians • Model of Care Group Clinical Implementation Advisory Group

20. Evidence – basis for review? • Longer symptom to diagnosis time of brain tumourscfother tumours • Complete resection rate for some brain tumours lower in the UK than international centres • The 30 day, 1 and 5 yrsurvival rates for some UK brain tumours lower than US • International evidence suggests: • Centresperforming more VP shunts better outcomes than lower volume centres • Shunts by a consultant out-of-hours do better than if by a trainee

21. Evidence – severe TBI? • Outcomes vary (England and Wales): • Mortality: 8.1% -18.8% of severe paediatricTBI PIC admissions • Wide variation in process of care for children with severe TBI • Internationally: • lower mortality rates for children with TBI treated in paediatric trauma centres than those in adult trauma centres

22. SBNS • “unanimously agreed that the status quo for the provision of neurosurgical services was unsustainable” • Change should be by “evolution rather than revolution” • “Emphasis should be on the demonstration of compliance with standards of care and not solely on the volume of work” • Concern about de-skilling of the adult neurosurgeon for the life-threatening paediatric injury

23. “Joint Statement” Joint Statement from the Society of British Neurological Surgeons (SBNS) and the Royal College of Anaesthetists (RCoA) Regarding the Provision of Emergency Paediatric Neurosurgical Services Endorsed by the: Association of Anaesthetists [AAGBI]; Association of Paediatric Anaesthetists [APA]; Intensive Care Society (ICS); Neuroanaesthesia Society [NASGBI]; Paediatric Intensive care Society [PICS]

24. Hospitals accepting children should be co-located with EDs, Anaesthesia, ICU, on-site CT…. possible to perform a CT scan on a child within one hour. Children with emergency neurosurgery should be discussed with closest service providing paediatric neurosurgery except if admitted to hospitals with on-site "adult" neurosurgery when discussion initially with resident team In true emergency involving a child requiring neurosurgery admitted to ‘adult-only’ neurosurgery, the most appropriate surgeon, anaesthetist and intensivistwould be expected to provide life-saving care including surgery. There should be full consultation with clinicians at paediatric neurosurgery and will be supported by senior hospital managementand fully supported by both the RCoA and SBNS. Children deteriorating from acute neurosurgery will be transferred directly by the referring hospital following resuscitation / CT in consultation with lead centre paediatric neurosurgeon and PIC. Transfer should be undertaken by most senior team. Very rarely, use of retrieval teams may be appropriate. Referring Hospitals should have policies and protocols in place for such situations.

25. 2012

26. Steering Group final ‘principles’ For services to be safe, sustainable and world class status quo not an option Service should be delivered by fellowship trained consultant paediatric neurosurgeons (PN) with on-going commitment (50% of their jobs) to PN Children, families, other clinicians and services access to advice/ treatment from a PN 24/7. Every in-patient child should be seen every day by PN Surgeons may have a “mixed practice” (across adults and children) - recognising that some skills apply to both

27. Need for national data collection: outcome data for comparisons PN Services come under remit of National Commissioning Board…. a review mechanism to evaluate success of Children’s Neurosurgical Managed Networks Each Network should offer a world class service for virtually whole range of PN conditions

28. Standards A The network approach B Making choices C The patient and family experience D Access to services E Age appropriate care F Prenatal Screening G Excellent Care

29. Best Practice Principles: Pathways of care: epilepsy, hydrocephalus, tumours, trauma, spinal dyraphism

30. Anaesthetic Competency Every child should have care delivered by an anaesthetist or anaesthetists who possess the relevant competencies as demanded by the patient’s age, disease and co- morbidities. • In Children’s Neurosurgical Centres Consultant anaesthetic competencies: • Regular commitment to elective paediatric neuroanaesthesia • New appointees with whole time interest in paediatric neuroanaesthesiacompleted ‘Advanced Level’ training in paediatric anaesthesia • Additional 6months training in adult and paediatric neuroanaesthesiain recognised neurosurgical centre

31. In adult neurosurgical services admitting less complex elective and emergency paediatric cases: • Anaesthetic competencies provided by neuroanaesthetists undertaking regular paediatric anaesthetic practice • CPD in paediatric anaesthesia, resuscitation and perioperative care • Emergency cases may require combined efforts of adult neuroanaesthetist with paediatric anaesthetist to ensure required competencies It should be noted that all qualified anaesthetists are competent to undertake life saving care for children in an emergency situation.

32. Where do we go now …………

33. Networks: evolution rather than revolution It is envisaged that there will be approximately 8 regional children’s neurosurgery networks across England, … some networks will comprise two or more centres one of which would be Lead Centre. • Overarching principles of care for services across the network: • 24/7 advice and support provided by Consultant PNs • Referral pathways for urgent review and assessment, diagnosis and treatment for each network for each condition, by Lead Children’s Neurosurgical Centre

34. Networks – current position… • Networks agreed (letters this week) • Lead centres and board appointments in progress

35. Children’s epilepsy surgery in England is now nationally commissioned: • NHS chose 4CESS centres to provide paediatric surgery for children with epilepsy: • Bristol, Birmingham Children’s Hospital, Great Ormond Street Hospital with King’s College Hospital, Liverpool’s Alder Hey Children’s Hospital with Royal Manchester Children’s Hospital • The 4 specialist centres will increase capacity to provide surgery for children with difficult to control epilepsy • By 2015-16 around 350 children each year will benefit from surgery. Previously, only 110 children each year have undergone surgery

36. Other Safe and Sustainable Processes…. The revolutionary approach………..

38. Mr Hunt said that decision to close units in Leeds, Leicester and west London were to be put on hold after an independent review suggested that the consultation process was based on "flawed analysis". The £6 million review into streamlining paediatric cardiac surgery in England "left too many questions unanswered", Mr Hunt asked NHS England to continue with the process of looking into the reorganisation of children's heart surgery and asked them to report back by end of July. ….. clearly a serious criticism of the safe and sustainable process. I therefore accept their recommendation that the proposals cannot go ahead in their current form and am suspending the review today.

39. Professor Terence Stephenson, Chairman of the Academy of Medical Royal Colleges, said: “The Academy recognised that the Safe and Sustainable review concluded that fewer larger surgical centres will improve cardiac services for children based on the evidence of their review of the evidence linking volume of cases to outcomes. Change remains a matter of urgency – it is 12 years since the report of the Bristol Inquiry was published and patients have waited too long for improvements to be made.”

40. Clinical Reference Groups

41. Parents taking their children to be treated in Bristol assumed that the level of care provided would be good. Few had any idea that there were no agreed standards of care for PCS or for any other specialty. There must be agreed and published standards of clinical care for healthcare professionals to follow. Hospitals which do not meet these standards should not be able to offer services within the NHS.

42. Paediatric Neurosurgery from the patients perspective…. • We need to ensure that this child has access to world class treatment whenever and wherever he presents……….. • Revolution or evolution? • How long does evolution take? • Networks? • CRG Specification?

43. Thank You

45. The Steers and StowerReport (Sept 2010): • Paediatric neurosurgery not planned systematically, developed incrementally • Visits highlighted different ways units resourced (structure and personnel) • Variation in access and support for different conditions across UK • To improve children’s neurosurgical services, 24/7 advice and care from paediatric neurosurgeon needs to be available across networks • 5units provide 24/7 paediatric neurosurgical on-call rota • In 3 - cover for paediatric neurosurgery relies on adult neurosurgeons with ‘official’ written rota • In 7 - no identifiable rota: on-call adult neurosurgeon find available paediatric neurosurgeon when necessary

46. “We noticed that some Children’s Neurosurgical Centres were appointing additional Consultant Paediatric Neurosurgeons (PNS) to deliver 24/7 paediatric neurosurgical rotas in isolation from the network proposals. I wrote to Trusts outlining the risks that this strategy posed in terms of diluting the skills and experience of PNS. The Steering Group decided to amend the standard (requirement that 50% of a PNS work load is allocated to PN), to state that PNS should be involved in approximately 80 operative paediatric cases per year.” Feb 2012

47. Mike Bewick, Deputy Medical Director NHSE “How does the ‘PN PCS Safe and Sustainable’ work transpose into the new Specialist Services commissioning structure?” 19th June 2013

48. Neurosurgeons • 24/7 care by consultant paediatric neurosurgeons: • 50% time in paediatric neurosurgery • 80 operative cases per year • All new admissions seen by a paediatric neurosurgeon within 24 hours • All children requiring neurosururgical input should be reviewed daily by a paediatric neurosurgeon