INFANTS, CHILDREN AND YOUNG PEOPLE WITH SPINAL DEFORMITY IN THE UK
Recommended Standards of Care for Patients with Spinal Deformity
Acknowledgements
The development and publication of this document has been funded by the British Scoliosis Society, and supported by the Spinal Deformity Review Project, hosted by the London Specialised Commissioning Group. Special thanks are due to members of the BSS Executive, and in particular to Mr Brad Williamson, who offered time, expertise and commitment to the drafting of these standards.
Introduction
In the United Kingdom, services for infants, children and young people with spinal deformity are based mainly in spinal surgery centres. Patients with spinal deformity require specialised care and expertise over a long period. In their document Commissioning Tertiary and Specialised Services for Children and Young People (2004), The Royal College of Paediatrics and Child Health highlighted that scoliosis should be managed in a specialist centre so that “access to appropriate expertise is gained” for the children and their families (p. 104). Children with spinal deformity often have existing complicated medical problems and require expertise from appropriate paediatric specialists.
In 2002, a national review of spinal deformity services for children was initiated. During the review, it became apparent that the standards of care and range of practice in different regions varied greatly. As a result of this, the project examined:
National clinical guidelines for community care of children at high risk of developing scoliosis due to existing disability. Standards and workforce issues for spinal deformity care. Patient information available to infants, children, young people and their families, and the commissioning arrangements for spinal deformity care.
The British Scoliosis Society is the professional group of surgeons, clinicians and scientists with an interest in the development and delivery of spinal deformity care. Much work has been undertaken over the last four years with the help of members of the Society. This has resulted in the development of these standards that will act as a guide for clinicians, managers and commissioners when commissioning and developing spinal deformity services locally, regionally and nationally .
Clear guidance from the Department of Health is available and has been used in developing these standards. A key document is “The National Service Framework for Children, Young People and Maternity Services (NSF).” This comprehensive document comprises 11 standards, exploring all aspects of children’s care and development. It identifies how services for children will be improved over a 10 year period, across health, education and social care. It is expected that services will:
Give increased information, power and choice to children and young people in the support and treatment they receive. Improve access to services for all children and young people. Tackle health inequalities, paying particular attention to children who are likely to achieve poor outcomes. Promote and safeguard the welfare of children and ensure all staff are suitably trained.
1 The NSF also expects that: “The health and well-being of all children and young people is promoted and delivered through a co-ordinated programme of action, including prevention and early intervention wherever possible, to ensure long term gain, led by the NHS in partnership with local authorities.” (Standard 1, page 21).
With specific regard to the needs of disabled children the NSF states: “Disabled children and young people are first and foremost children, with all the rights, needs and aspirations of all children and young people.” (Standard 8, p7).
The standards set out in this document are the minimum requirements for a paediatric spinal deformity service to be achieved over a period of time. The standards exist to promote excellence in spinal deformity care. It is clear that they will evolve as each standard requires support and commitment from clinicians, allied health professionals, managers and commissioners for implementation. These standards should be read in conjunction with other spinal deformity guidance available on the London Specialised Commissioning Group website. (www.londonspecialisedcommissioning.nhs.uk).
2 Table of Recommended Standards
Standards
1 Spinal surgery requires specialised All surgeons working in spinal deformity should have this as surgical expertise. their principal clinical interest. All spinal deformity surgeons should work with at least one other spinal deformity surgeon in the same institution. All anaesthetic personnel working with spinal deformity surgeons should undertake routine practice in this area.
2 The child’s environment. Children should be seen and treated in dedicated children’s areas and looked after by appropriately trained staff. Support staff such as play specialists, family care officers and teachers should be involved in their care.
3 Care of children with special needs. Children with existing neuromuscular conditions should be under the shared care of a named paediatric neurologist whilst an inpatient with the spinal surgeon. Children with other conditions should be under the shared care of an appropriate paediatric specialist with the spinal surgeon.
4 Transfer to adult services. All young people transferring to adult services should have an informed smooth transition to adult services care.
5 Facilities and infrastructure. At a specialist spinal deformity centre, it is expected that there are appropriate accessible intensive care or high dependency care facilities; 24 hour 365 day access to on site MRI scan or CT myelography; 24 hour 365 day access to onsite paediatric medical care; radiography expertise to take long cassette x- rays and appropriate flexibility x-rays; lung function measurement facilities; support services of plaster casting under anaesthesia, physiotherapy, orthotics and occupational therapy.
6 Participation in audit All spinal deformity centres should be participating in local and national audit to ensure high level of service provision.
3 1. Spinal surgery requires specialised surgical expertise.
All surgeons working in spinal deformity should have this as their principal clinical interest. All spinal deformity surgeons should work with at least one other spinal deformity surgeon on the same site. All anaesthetic personnel working with spinal deformity surgeons should undertake routine clinical practice in this area.
Aim
To promote safe spinal deformity surgery.
Rationale
1. According a recent survey undertaken by the BSS, and the most recent HES data available, (HES 2004/05) most spinal deformity surgery is carried out in specialised spinal units. The Royal College of Paediatrics and Child Health recommend that children with scoliosis are cared for in specialist centres to ensure appropriate access to expertise.
2. The management of spinal deformity in children is demanding, both in the surgical techniques used and the decision making process required. Spinal deformity surgery should be the principal clinical interest of those undertaking spinal deformity surgery.
3. Some spinal deformity surgical procedures are so complex that two consultant surgeons are required to complete the operation within a reasonable time both for patient safety and clinician fatigue. In addition in some cases difficult management decisions are required. The ability to share this burden with a colleague with the appropriate expertise will result in better decision making.
4. Occasional scoliosis surgeons will not have either the expertise or the support and infrastructure to carry out this surgery safely. This practice should not be supported.
5. The Bristol Inquiry: “Learning from Bristol: the report of the public inquiry into children's heart surgery at the Bristol Royal Infirmary 1984-1995” (2002) recommends that competence is assured through team work, shared learning across the professional boundaries, clinical audit and reflective practice, and leadership.
6. Children requiring spinal deformity surgery may have complex medical problems. Only by familiarity with these problems can they be managed appropriately.
7. The Royal College of Surgeons in: “Children’s Surgery – A First Class Service” (2000) recommend that anaesthetists undertaking paediatric anaesthesia on a part time basis should have at least six months of whole time equivalent paediatric training. They also recommend that there is a named trained anaesthetist who is responsible for children and undertakes at least one children’s list a week.
8. All spinal deformity surgery is accompanied by a risk of neurological injury, including paraplegia. Electrophysiological spinal cord monitoring reduces this risk and is essential for safe surgical practice during surgical procedures.
Suggested Audit Indicators
Attempts to define minimum numbers for activity are not currently supported by research.
Spinal surgeons work in teams of no less than two members. Anaesthetists who maintain professional practice by undertaking regular spinal deformity practice. Centres with electrophysiologists who maintain professional practice by involvement in regular spinal cord monitoring.
4 2. The child’s environment.
Children should be seen and treated in dedicated children’s areas and looked after by appropriately trained staff. The healthcare team has a duty beyond the technical performance of surgery. Professional care means that the needs of the child are responded to in appropriate ways.
Aim
To ensure that the physical, emotional and psychological needs of the child and their family are met during the child’s treatment.
To ensure that professionals communicating with children and their families listen to their needs and address their concerns
To ensure that the multidisciplinary team is involved with the child from the preoperative consultation so that trusting relationships are formed and that the patient’s treatment is made smoother by the early establishment of these relationships.
To ensure that the National Service Framework for children and young people is implemented by qualified staff.
To ensure that children and their families have access to high quality, child-centred services, that respond to their needs.
Rationale
1. The NSF recommends that parents’ views are an important part of service planning and development, and that the views of children should be sought in appropriate ways. They are entitled to receive high quality care that is co-ordinated around their individual and family needs and takes account of their views.
2. The physiological and psychological needs of children are different to those of adults. Both physiological and psychological management require adaptation to suit their needs.
3. In order for children and their families to participate in their own care, they need information about services, problems or specific health conditions, and the choices which are available to them. The Disability Discrimination Act needs to be taken into account when considering the provision of information in appropriate formats and language.
4. Children’s information needs change as they grow up. Families who accompany them have their own needs with reference to informed consent, explanation and reassurance. The NSF identifies the measures that should be taken for children to provide appropriate safe care in an environment that is well suited to the age and stage of development of the child.
Suggested Audit Indicators
Percentage of children who are seen in dedicated paediatric clinic areas. Percentage of children who are seen in adult clinic or ward areas Percentage of patients who are given a named care co-ordinator on first admission to the hospital Percentage of children who meet the support staff prior to hospital admission Percentage of teenagers who consider their facilities are developmentally appropriate and physically appropriate. Percentage of staff who have specialist training or substantial experience in the treatment of children.
5 3. Care of children with special needs.
All children with medical comorbidity should be under the care of a named paediatrician with the appropriate expertise, as well as a spinal surgeon, during their inpatient stay.
Aim
To ensure that all children with existing neuromuscular conditions should be under the shared care of a named paediatric neurologist while an inpatient in conjunction with spinal surgeons. Children with other conditions should be under the shared care of an appropriate paediatric specialist in conjunction with the spinal surgeon.
Rationale
1. Children with complex co-morbidities present the medical team with difficult problems which relate to both their underlying condition and to their surgical problem.
2. The paediatric specialists and staff will often know the child and family well, and will be able to advise on the management of problems arising from the underlying problem.
3. The Bristol Inquiry recommends that the specialist advice for children should be sought to ensure the best possible outcome and that when planning and organising services, the “requirements of quality and safety should prevail over considerations of ease of access”.
Suggested Audit Indicators
Percentage of children, with underlying co-morbidities who receive shared care with a named paediatric specialist.
6 4. Transfer to adult care.
The interface between paediatric and adult care is subject to local definition. The NSF states that transfer between services is often unsatisfactory due to lack of co-ordination. This is particularly so in the case of young people with complex or special needs It is important that the transition from paediatric to adult care is smooth – perhaps by a transitional care pathway or care bundle approach.
Aim
To ensure that all young people transferring to adult spinal deformity services receive age appropriate services that respond to their needs as they transfer to adult services
Rationale
1. The time for transition to adult services comes at a point where there is much change occurring. It can be difficult. The young person is becoming a decision making responsible adult. The demarcation between a child and a young person is sometimes unclear.
2. The issues concerning the transition to adult care have been highlighted in several documents. The NSF comments that adult services may be “organ” or “system” based, unlike paediatric services which are generally more holistic in approach
3. Young people with special or complex needs may find it more difficult to make the transitions successfully. They may require additional support. The NSF states that young people with complex needs often receive poor support during this period. It is recommended that transitional care for this group takes account of all their needs.
4. Service planning in many trusts includes the establishment of adolescent units or adolescent clinics so that there is a gradual introduction to adult services for the young person and family. Many adolescent units will look after children from the age of 13 years.
5. Families who are very involved with decision making whilst the patient is young may find the transition to adult services difficult and may feel that they are being excluded. It is important to ensure that families do not feel threatened or alienated and should be invited to participate as long as the young person is agreeable.
Suggested Audit Indicators
Young people transferring to adult spinal deformity services pass through a locally adapted transitional care protocol. Young people who are under the care of other clinicians for different medical problems are transferred within a multi-agency context. Young people are copied into clinical correspondence about their condition or progress prior to the age of 18 years. Gillick competent young people also consent to treatment. Services that care for young people have a written policy on transition to adult services which is the responsibility of a named person.
7 5 Facilities and infrastructure required.
The Royal College of Paediatrics and Child Health recommend that scoliosis surgery is undertaken in specialist centres. There are key clinical facilities that are essential components of a safe paediatric spinal deformity service. The following list is not exhaustive, but as a minimum all are required:
Electrophysiological spinal cord monitoring during spinal surgery, supported by a Consultant Neurophysiologist or an appropriately qualified person in Medical Physics. Ability to take high quality long cassette X-rays and appropriate flexibility X-rays. 24 hour, 365 day access to onsite MR scanning or CT myelography with specialist staff to interpret results when necessary. Both Paediatric Intensive Care, where the paediatric patient may require short term ventilation and Paediatric High Dependency Care. Both paediatric and adult emergency equipment should be available on site. 24 hour, 365 day access to onsite paediatric medical care. Lung function measurements for infants, children and young people should be available. Access to the full range of treatments for children with spinal deformity - plaster casting under anaesthesia, orthoses, and surgery should be available.
Aim
That paediatric spinal surgery is undertaken in specialist centres with specialist expertise in an effective, efficient manner with necessary resources to promote patient safety and minimise patient and family anxiety and disruption.
Rationale
1. As identified in standard 1, the “NSF for Children and Young People”,” Every Child Matters”, “Bridging the Gap – Health Care for Adolescents” and “Children’s Surgery – A First Class Service” all recommend dedicated areas for children and young people that are run by specially qualified personnel..
2. Compliance with implementation of Department of Health guidance and policy initiatives as part of the NSF or Children and Young People
3. Children are not seen in isolation from their families. They often make long journeys to attend outpatient appointments for several years before surgery is planned. A smooth service that provides investigation and treatment on the same day enables minimum disruption to family life.
Suggested Audit Indicators
Electrophysiological spinal cord monitoring is available for each spinal deformity corrective surgical procedure. Radiographer is available to take high quality long cassette x-rays and appropriate flexibility x-rays during office hours. On call rota for staff to undertake out of hours MR scanning or myelography. Number of cancellations due to lack of PICU or HDU beds. Procedures requiring anaesthesia including MRI and CT scanning were undertaken by paediatric anaesthetists. Delayed discharges due to lack of specialist support eg orthotics.
8 6 Participation in audit
Audit is an improvement process that aims to improve patient care and outcomes through systematic review against clearly defined criteria and the subsequent implementation of change. Audit aims to review, change, implement and evaluate practice at a local level. It can help towards the development of guidelines or standards, or may act as a review process for existing ones. Selection of the relevant criteria leads to successful audit.
Aim
All spinal deformity centres should participate in local and national audit to ensure high quality of service provision. There may be several audits that examine different areas of practice.
All spinal deformity centres should participate in local and national audit to obtain an accurate dataset that may be used in the commissioning process.
Rationale
1. Local audit provides an opportunity to examine the quality and effectiveness of current practice, identify areas for improvement and further service development.
2. National audit through one professional body (eg BSS) allows a systematic review of standards and provides reliable information for broad future organisational planning.
3. Only by taking part in multi-centre audit of outcome from surgery can a consistently high level of service provision be ensured. Participation in multi-centre audit is essential to maintain the quality of service provided and maximise opportunities for patient satisfaction and service development.
Suggested Audit Indicators
Any aspect that has already been highlighted in previous standards could be examined and evaluated as part of an annual review, service redesign, process mapping or quality improvement programme. However it is important to participate in national data collection when national audit is undertaken. This has proved to be very successful and useful for cardiac procedures, other orthopaedic procedures and paediatric cancers among others. Completion of real time surgical procedure audit collection to national registry (held by BSS).
9 REFERENCES
National Service Framework for Children, Young People and Maternity Services. Core Standards (2005). DoH www.dh.gov.uk
United Nations Convention for the Rights of the Child 1989 Ratified by the UK government in 1991
Human Rights Act 1998, The Stationery Office
Disability Discrimination Act 1995, The Stationery Office
Learning from Bristol: the report of the public inquiry into children's heart surgery at the Bristol Royal Infirmary 1984 -1995 (2002) Professor Ian Kennedy www.bristol-inquiry.org.uk
Commissioning Tertiary and Specialised Services for Children and Young People (2004) Royal College of Paediatrics and Child Health www.rcpch.ac.uk
Spinal Deformity Activity in Spinal Centres across England BSS survey 2005 Jeremy Fairbanks Nuffield Centre Oxford
Children’s Surgery – A first Class Service A Report of the Paediatric Forum of the Royal College of Surgeons of England 2000 www.rcseng.ac.uk
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