THE SPIRES CLEFT LIP AND PALATE CENTRE
Annual Report
2012
The Spires Cleft Lip and Palate Centre. http://www.spirescentre.nhs.uk/
The Centre comprises of two sites (Hubs) shown below – patients receive their surgery at each of the Hubs. Other services e.g., speech therapy, orthodontics and ENT may be provided at the Hubs or closer to home by either local specialist clinicians or those from the Hubs.
Oxford University Hospitals Trust Headley Way Oxford OX3 9DU
Salisbury Foundation NHS Trust Odstock Road Salisbury SP2 8BJ
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Spire Cleft Lip and Palate Team Stephen Robinson – Clinical Lead/ Orthodontic Consultant Norma Patterson – Network Service Manager Clinical Team – Oxford
Clinical Team ‐ Salisbury
Michael Cadier – Primary surgeon
Andrew Currie – Secondary surgeon
Tim Flood – Secondary surgeon
Giles Kidner – Consultant orthodontist
Steve Robinson–Consultant orthodontist
Penny Lennox – ENT Consultant
Marcel Geyer – ENT Consultant
Tim Goodacre ‐ Primary surgeon
Sandip Popat – Consultant Restorative dentist
Nichola Hudson – Lead nurse
Tina O’Neill – Specialist Nurse
Maureen Warren – Specialist Nurse
Jane Sibley – Specialist Nurse
Ginette Phippen – Lead Speech therapist
Debbie Clark – Specialist Nurse
Fiona Jeyes – Principal Speech therapist
Carrie Luscombe–Principal Speech therapist
Sandra Treslove – Speech therapist
Lucy McAndrew – Speech therapist
Cindy Williams – Speech assistant
Leda Koutsoulieri – Speech therapist
Jane Lewendon – Clinical psychologist
Helen Piggott – Speech therapist
Mary‐Ann Brewer – Co‐ordinator
Zoe Gordon – Speech therapist
Christine Adams – Cleft secretary
Angela Shanly – Lead psychologist
Ryan Kowalewski – Cleft administrator
Sian Thomas – Clinical psychologist Steven Berry – Co‐ordinator Lorraine Linekar – Cleft secretary Kayleigh Stone – Cleft administration assistant
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CONTENTS Executive summary…………………………………………………………………………………………………..………4 Summary of achievements in 2012…………………………………………………………………………………..5 Management report…………………………………………………………………………………………………..…….6 Speciality Reports Surgery…………………………………………………………………………………………………………………………….7 Clinical psychology…………………………………………………………………………………………………….……10 Speech and Language Therapy………………………………………………………………………………..………13 Nursing……………………………………………………………………………………………………………………..……15 Dental Health (incorporating orthodontics, paediatric dentistry and restorative dentistry) ……..17 Appendix I
Tri centre Report……………………………………………………………………………………..18
Appendix II
Activity comparisons 2007‐2012…………………………………………………………….…27
Appendix III Objectives 2013/14………………………………………………………………………………….28
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Executive Summary The Spires Cleft Lip and Palate Centre have provided a regional specialist service for eight years. The multiple services involved in the comprehensive cleft pathways continue to provide high quality care for our patients. During 2012 the commissioning of all specialist services have been reviewed nationally and each speciality has developed specific service specifications to support contracts for Trusts. There have also been developments in line with this for quality dashboards within speciality services and members of the Spires Centre have contributed to the development of these new documents for the cleft service which will continue to raise standards. The core standards set out in the service specification are primarily outcome based and some of these will be reflected in the dashboard during the pilot phase of 2013/14. The quality of patient care remains a top priority for Spires and the continued link with West Midlands, South West and South Wales Centres‐Tri Centre Audit Group provides annual results against agreed national outcomes, these can be seen in Appendix I. The role of research within cleft is embedded in our work, this year the centre completed their contribution to the Cleft Care UK 2010‐2012 (CSAG II) which evaluated cleft care and outcomes following the establishment of specialist cleft centres. Next year Spires will commence their recruitment for the Timing of Palatal Surgery (TOPS), an international randomised trial looking at speech outcomes for children who undergo palate repair at either 6 or 12 months of age. A summary of The Spires Centre achievements for 2012 follows.
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Summary of achievements in 2012 Audit Audit of speech and hearing outcomes for children with cleft palate Tri Centre Audit Research Supporting parents of children with cleft lip (SPOCCL) – research to explore the early relationships between mothers and babies with cleft lip *Comparing results of lip repairs in children with UCLP using different repair technique – looking at facial aesthetics in a six year cohort *Review of suture techniques and effect of removing dissolving stitches to ultimate lip scar **Pre op palate width in comparison to speech outcome Education MSc – Effect of cleft type on speech outcomes for children aged 5 years MSc – Quality of life and velopharyngeal dysfunction DClinP – Visual feedback therapy for individuals with nasal speech associated with velopharyngeal dysfunction Teaching (Psychology)– to Oxford Clinical Psychology Doctoral Course and Consultants & Registrars in Plastic surgery Completion of SLT book for use by community SLT’s to support assessment, diagnosis and treatment of children with cleft palate and velopharyngeal dysfunction – publication due Autumn 2013 Cleft study days held in Oxford and Salisbury for midwifes, nurses and allied professionals Patient experience Face It – online CBT and social skills programme for adults Completion of DVD and workbook for children about Alveolar Bone Graft – supported by White Lantern Film Company and Children in Need In progress in conjunction with CLAPA – film about children’s experience of living with cleft lip and palate, in collaboration with White Lantern Films Commencement of prosthetic service for patients with persistent speech difficulties related to palate dysfunction Nasendoscopy is now carried out by trained speech therapists – this allows more patients to be seen by SLT’s when the surgeon is unavailable
Lucy McAndrew Spires clinical team Louise Dalton Michael Cadier/ Ben Khoda (SpR) Michael Cadier/ Ben Khoda (SpR) Serryth Colbert (SpR) Leda Koutsoulieri Carrie Luscombe Ginette Phippen Sian Thomas SLT team
Nursing team
Jane Lewendon Jane Lewendon Jane Lewendon Sandra Treslove Sandip Popat Leda Koutsoulieri SLT team
*Both of these studies have been accepted for presentation at the International Plastic Surgery meeting in Brazil November 2013
**This study has been accepted for presentation at Craniofacial Conference April 2013
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Management The administration team in Salisbury commenced the preparatory work for a Trust wide electronic patient record six month pilot which will ‘go live’ in 2013. Although this has been resourceful the team acknowledge the benefit of having clinic attendees notes viewable electronically which will negate the need for piles of notes to be transported to each clinic both locally and across the network. The team have also been part of the pilot for TheatreMan, a new theatre booking system. The transfer of patients from Poole continue to bring challenges not only for the clinical teams but also for admin, these patients are now all entered on Excelicare (cleft electronic patient record) and will follow the appropriate pathways for the remainder of their cleft care. The end of the year brought some staff changes and it is hoped that the new members of staff will embrace the world of Cleft as much as their predecessors. The team in Oxford remain stable and the additional administration support secured last year has proved an asset to the clinical teams. The introduction of Cerner Millenium as an electronic patient record system in Oxford University Hospital Trust experienced many teething problems and is not ‘cleft friendly’ but has shown its benefit in supporting audit and reporting for the clinical teams. The cleft electronic patient record – Excelicare continues to prove a useful tool to the Centre, enabling data to be captured accurately and utilised for national and regional audit. Its value will also be seen in supporting the data collection required for the quality dashboards from April 2013. The year ahead brings continued work to support the clinical teams and on both sites the move towards complete electronic patient records. 2012 also saw a change in Network Manager. After 10 years with Spires Alison has taken up a new post of Paediatric Network Manager for South of England Paediatric Strategic Partnership between Oxford and Southampton. We wish her well in her new post and would like to thank her for all her hard work and support over the years. Norma Patterson has joined the team as Network Manager and she brings with her experience in commissioning, project management and paediatric nursing, she is looking forward to a new challenge as part of the Spires team.
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Speciality reports Surgery We have faced a number of challenges over the last 12 months with an increase in surgical activity specifically in the number of returning adult patients requesting treatment not previously available as a child. This has been exacerbated by the transfer of patients treated previously at the Dorset and Stoke Mandeville Cleft Centres. This has put significant pressure on our services most notably on Salisbury surgical waiting times. We are reviewing the surgical pathway looking at all options to control pressures if national standards are not to be breached. The appointment of a further cleft surgeon is currently being considered as part of the solution. The patient workload at the Oxford hub has been more stable, with treatment times and outcomes remaining within national guidelines during a period when no abnormal peak in new patients has been experienced. However, the consolidation of the Stoke Mandeville patient caseload has produced a bulge of cases requiring secondary surgery for speech and nasal deformity (as with the Poole transfer to Salisbury), and this additional caseload is anticipated to take about a further year or two to be managed satisfactorily. This year began with a period away from work for Tim Goodacre at the Oxford end for elective surgery from which he has fully recovered. The team managed the leave of absence very well and there has been no noticeable backlog in case management as a consequence. However, this time did shed some light on the need for the network to be vigilant when it is dependent upon a small number of clinicians for service delivery, and the surgical team are grateful to the network board for their support with this in future planning. We have engaged with a number of national research projects over the last few years. All clinical staff has now completed the training requirements to participate in the nationally organised Timing of Palatal Surgery (TOPS) Trial, emanating from the Manchester University Clinical Trials Centre. This is an international multi ‐ centre trial. Michael Cadier & Tim Goodacre have both completed Good Clinical Practice (GCP) training and evaluation (a national requirement for participation in research) and both also underwent a collaborative training session with Brian Sommerlad at Great Ormond Street Hospital. An unexpected benefit of the collaborative training sessions has been two significant changes in clinical practice which it is hoped will improve the quality of the surgical outcome for the children undergoing cleft palate repair. Firstly, the use of Tranexamic Acid to reduce postoperative bleeding with the specific aim of reducing blood collection within the surgical site which may predispose to development of scar tissue. Secondly, extra drainage holes in the nasal layer of the cleft palate repair have now been instituted as standard practice following Brian Sommerlad’s protocol which again is hoped to reduce scar tissue formation as a result of blood accumulation. It was noted Great Ormond Street had an imaging system directly leading from the operating microscope which was able to generate high resolution photographs and videos that could be directly transferred onto an electronic patient record. At the current time in Salisbury a low resolution system is being employed without the facility for electronic transfer. We are looking to upgrade the monitoring and imaging facility. The benefits of these imaging systems lie in teaching, producing photographs and videos for conferences and have the potential to store records directly into patient notes, perhaps eventually to record the whole of the operation. This may become a standard medico‐legal requirement over the years to come.
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Michael Cadier has been undertaking visits to a number of other UK cleft surgeons most recently visiting Bruce Richard in Birmingham, sitting in on a clinic. From this visit a number of potential improvements in the Multidisciplinary Team Clinics in Salisbury have been mooted and also potential improvements in the surgical management in patients with velopharyngeal insufficiency. It is hoped this will be taken up by other cleft surgeons. The Bilateral Cleft Lip and Palate Facial Aesthetic Scoring System project is still ‘work in progress’ with the main challenge at the current time being to obtain consent for photographs of children aged 5, from a number of units around the country in order to form a facial aesthetic index. This work is in collaboration with Marc Swan who is currently a Plastic Surgery Fellow in Toronto and is about to join the Great Ormond Street cleft team as a UK Cleft Fellow appointed by the Training Interface Group. Three other projects have been undertaken in collaboration with Ben Khoda (Specialist Registrar in Plastic Surgery). One of his projects is to evaluate the result of lip repairs in children with unilateral cleft lip and palate and comparing the results obtained using the technique performed by Tim Goodacre in Oxford (a modified Fisher Rotation Advancement Repair) with those undertaken by Michael Cadier in Salisbury (a Malek Repair). This will look at the facial aesthetics in a six year cohort of children treated between 2000–2006. At the same time an evaluation of the lip scar in these children has been undertaken to compare the results of suture techniques with particular reference as to whether removal of dissolving stitches conveys any benefit to the ultimate lip scar. Both of these projects have been accepted for presentation at the International Plastic Surgery Meeting in Brazil in November 2013. A further study is also underway by Ben Khoda looking at the results of facial aesthetics in the same group of patients treated in Salisbury and linking the facial aesthetics score to anthropometric measurements made from preoperative and postoperative models. The aim of this project is to determine whether there are particular characteristics preoperatively that is predisposed towards a better outcome and also as to whether there are any particular markers postoperatively anthropometrically that will relate to a good aesthetic outcome. Serryth Colbert (Specialist Registrar in Maxillofacial Surgery & newly appointed Cleft Fellow in South Wales) has also undertaken several studies and undertook a retrospective review of the speech outcomes and burden of care of children who had bilateral cleft lip and palate repairs in Salisbury. The preliminary findings from this study were presented at the Cranial Facial Conference in April 2012. He is also undertaking work on looking at the width of palates preoperatively and comparing it to speech outcomes. This work has been accepted for presentation in the April 2013 Cranial Facial Conference. In Oxford, surgical research has focussed on the existing projects looking at early psychological intervention for families with newly born babies with clefts. Tim Goodacre has also been engaged in supporting longer term evaluation of the outcomes of secondary surgery for speech in cleft palate children, the subject of several projects developed by the speech therapy team. An idea for better imaging of cleft palate musculature is being explored with imaging researchers in Oxford, which it is hoped might deliver significant advances in the medium term. Tim Goodacre has also been closely involved with the psychology team at McMaster University in Canada and Dr Pusic in New York, developing a new patient reported outcome measure for cleft children. – The ‘Cleft Q. A publication has already emanated from this work, and much more is anticipated. His work initiating the James Lind Alliance Research Priority Setting Process (JLA_PSP) for cleft care has reached its conclusion, and has led to a 12 item priority order which is being adopted as a guide
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for national research funding mechanisms. This work is to be presented at the annual Craniofacial Conference in April 2013, as well as at the International Cleft conference in Florida in May 2013. Tim has also been elected to the national Commissioning Group dealing with cleft care, as well as currently representing plastic surgery as cleft lead from the Royal College of Surgeons of England. The new government focus on the performance of units in which surgery forms a significant part of the care has rightly caused the Spires Cleft team, and surgeons in particular, to reflect on how we currently perform, and what improvements to care we should be addressing ourselves. In many respects our service is somewhat ‘ahead of the game’ with our now well established and accepted participation in the annual ‘Tri‐Centre Audit’ of performance alongside 2 of the other 8 UK cleft networks. This annual data is a thorough, externally validated, collection and analysis of outcomes across from all disciplines, with a longitudinal perspective that increases year on year. Much attention is paid to the outcomes, and any outlying performance indicator is scrutinised and action taken as suggested by the combined teams. Considerable debate has been stimulated over the years of what from this audit should be publicly available. The Leeds situation has shown just how difficult the analysis and interpretation of performance data is in practice. This reflects a wider concern about the use and abuse of statistics, as consistently warned about in the very helpful BBC Radio 4 series ‘More or Less’ on how numbers can be manipulated. Andrew Dilnot and Michael Blastland, the originators of the series (and Andrew Dilnot now sits as Chief of the Office of National Statistics) issue many cautionary tales of how statistical reports are misused, and in the current climate where data is requested regularly (and understandably) by the public, there is an urgent need to ensure that we present a truthful and transparent view of our performance, taking into account the full spectrum of patient variability that we encounter, which easily skews perspectives when our numbers in any given year might be extremely small for any given condition. As can been seen from the above 2012 has been an exciting and challenging year for surgery in the Spires Cleft Centre.
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Clinical Psychology The Clinical Psychology Service provides specialist psychological assessment and interventions across the lifespan, through attendance at multi‐disciplinary clinics, administration of national protocols for psychological assessment and intervention for pre‐ and post‐surgery, direct referrals to Psychology and the use of screening and audit to identify individuals and families in need. In mid‐2012 Louise Dalton left for a two year Career Break and in September Helen Care went on Maternity Leave. From September Sian Thomas worked independently in Oxford for several months, with supervisory support from Karen Steinhardt, Lead Psychologist in the Paediatric Psychology Department. We are grateful to Sian for her hard work in covering the Service in Oxford during this time and to Jane Lewendon for continuing to cover Salisbury. Sian who works two days for Spires Cleft was joined by Angela Shanly in November, who picked up two days (one as Lead, and one Clinical), to cover Louise Dalton’s Career Break. Jane Lewendon provides a service for the Salisbury area four days a week. All staff work flexibly over the whole week rather than on specific days. In Salisbury, most of the hub and spoke clinics have been covered, and Jane is available for consultation for the pre‐ and post‐op clinics, and the new baby clinic, when needed. All new families are now given an audit questionnaire through the nurses, which are posted back to Clinical Psychology, and aim to pick up any areas of psychological need. The orthnognathic protocol is being administered for the majority of patients pre‐surgery. Jane Lewendon has completed, with support from the White Lantern Film Company, and funding from Children in Need, a DVD and accompanying workbook about Alveolar Bone Graft. A film about children’s experience of living with cleft lip and plate is in progress, in consultation with CLAPA, also led by Dr Lewendon and Sandra Treslove, SLT, in collaboration with White Lantern films. In Oxford cover has varied according to staff availability, but the key multi‐disciplinary clinics have been attended. It has not been possible to cover the spoke clinics since September but consultation is available for any patients about whom there are concerns. In the first half of the year, Clinical Psychology ran a joint 18 months clinics with the Clinical Nurse Specialists, and it is aimed to review this and hold it again in the future. There is an on‐going process of endeavouring to administer the pre‐orthognathic protocol, and this, along with other aspects of the Clinical Psychology Service requires review of our data bases, and a reliable system for keeping track of patients who fall within this remit. In both Oxford and Salisbury, we hope to develop overall care pathways for orthognathic surgery from initial assessment to post‐op care. In Salisbury psychology and nursing are jointly developing care pathways for alveolar bone grafting which it is hoped will be adapted for use in Oxford. For direct referrals to Clinical Psychology in Oxford, Telephone Screening is currently being used to identify what is needed by the referred patient and family, and this has successfully resulted in some telephone consultation instead of face to face contact, and careful clarification of what is needed from meetings, including the involvement of other family members. The option to involve other family members has been taken up on many occasions. Identifying a suitable date and time for meetings has resulted in virtually no DNAs to initial assessments and reliable follow‐up appointments.
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In previous years there have been attempts to engage children and families in groups, at key stages, such as 7‐ 8 when appearance issues often become apparent, and at 12 yrs, in relation to Transition to Secondary School, but there has been little take‐up. We are considering other approaches to this, such as holding structured groups for parents and children across the life span, rather than limiting it to specific ages. In this way parents and children can learn from each others experiences in relation to issues such as having a new baby with CLP, appearance, teasing and bullying, and experiences of surgery. We will explore the viability of this approach. We will also look at targeting vulnerable groups in other ways, through developing our website and patient information packages. In line with this, CLAPA Wessex has funded training in Face It, the online CBT and social skills programme for adults with appearance related issues, and we are now using it with patients. Face It for children is currently being trialled and it is hoped that eventually this will become available for our use. Face It has been particularly useful for patients who find it difficult to travel to the hub site for individual therapy. The Spires Clinical Psychology Service continues to work with the Psychologist in the National Special Interest Groups to look at ways of capturing concerns and difficulties, in particular though review of audit protocols. Jane Lewendon took a lead on the Tri Centre Audit for Psychology in June 2012. Along with the other Centres we are currently looking at whether it is possible to support the Bristol Cleft Collective with the psychological measures in their longitudinal research with CLP families. Teaching and Research ‐ Sian Thomas provided teaching on Cleft to the Oxford Clinical Psychology Doctoral Course and to the Consultants and Registrars in Plastic Surgery. Louise Dalton is currently engaged in Research in CLP, which she reports on below: ‘Supporting Parents of Children with a Cleft Lip (SPOCCL’) ‐ Following the award of a grant from the Barclay Foundation and the generous support of the Cleft Research Fund we have been able to build on our longstanding collaboration with colleagues from the Universities of Oxford and Reading to initiate an exciting programme of research to explore the early relationships between mothers and babies with a cleft lip. The first phase of this work has been an observational study (July 2011 – December 2012), following the unfolding relationship and early communication between mothers and their infants during 5 fortnightly visits over the first twelve weeks. Thirty mothers and their babies took part in this study, including ten under the care of the Spires team, which involved video recordings of mothers playing with their babies while wearing special eye tracking glasses. Information collected during phase 1 has now been used to inform the development of a treatment to support parents of babies born with a cleft. This treatment is being tested using a randomised controlled clinical trial over the weeks following birth and prior to surgery (Phase 2). Families from Spires are being invited to join the study (SPOCCL) which plans to recruit a total of 80 babies in SE England. Participation will involve 6 sessions of either ‘Watch and Discover’ or ‘Support, Information and Advice’ and three assessments in addition to routine care from the cleft team. The study treatment will be delivered by Louise Dalton who has taken a career break from the Spires Psychology Service to work on this project for two years.
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Despite resource constraints, the Spires Cleft Clinical Psychology service continues to work to provide a responsive, timely and effective Psychology Service. Aims for 2013 are as follows: •
To tighten up processes for identifying patients with psychological needs, in the Oxfordshire and Buckinghamshire Spoke clinics, which are currently not attended in person by the Oxford Clinical Psychology team
•
To develop an effective system for identifying and accessing patients requiring psychological intervention in relation to orthognathic surgery and Alveolar Bone Grafting surgery and to clarify the Care Pathways.
•
To continue to work to find ways to access individuals and their families who are in most need of support from the Clinical Psychology service and to continue to develop a range of interventions which will most effectively target their particular needs.
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Speech and Language Therapy
The Speech and Language Therapy team is fully staffed at both Salisbury and Oxford sites; with a recent change in one team member in Salisbury where we have been fortunate to recruit an experienced SLT. We continue to work closely with our colleagues in the multidisciplinary cleft team as well as providing on going liaison and support for our colleagues in community SLT services across the region. Our main achievement for 2012 was to complete a therapy book which is due for publication in Autumn 2013 by J&R Press. The aim was to produce a high quality practical and accessible handbook of evidence‐based practice for the assessment and management of speech disorders relating to cleft palate. More details can be found at: http://www.jr‐press.co.uk/speech‐therapy‐cleft‐palate‐ velopharyngeal‐dysfunction.html There have been a number of positive clinical developments during 2012: 1. A charitable donation through CLAPA Wessex enabled us to buy five iPads and relevant apps to support children’s speech therapy and psychology across the two sites. 2. The protocol for prosthetic treatment has been finalised. This describes the service available for patients who may benefit from a dental prosthesis to address persisting speech difficulties related to palate dysfunction. This is jointly provided by the consultant orthodontist/restorative dentist with the SLT team and technician support. It is hoped that this specialist service may also be extended to meet the needs of other patients, referred on a tertiary basis 3. The patient group directive for SLTs to carry out nasendoscopy has been approved. This allows appropriately trained SLTs to administer nasal anaesthetic for nasendoscopic examination of palate function for speech. This means that more patients can be seen at clinics led by the SLT team, when the consultant surgeon is not available. The SLT team continues to develop audit and research activity on an individual and team basis. Several team members have completed MSc and doctoral studies which explore important clinical questions relating to speech therapy and cleft palate. This work is shared across the two clinical sites as well as with the wider multidisciplinary team and it is anticipated this will lead to further collaborative audit and research. Recent projects:
Audit of speech and hearing outcomes for children with cleft palate
MSc: Effect of Cleft Type on Speech Outcomes for children aged 5 years
MSc: Quality of life and velopharyngeal dysfunction
DClinP: Visual feedback therapy for individuals with nasal speech associated with velopharyngeal dysfunction
In addition two SLTs have attended calibration meetings for the TOPS trial (Timing of Palate Surgery). This international randomised trial is looking at speech outcomes for children who undergo palate repair at either 6 or 12 months of age.
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The priority objectives for 2013 are;
• to maintain effective specialist SLT outreach across the Spires region in partnership with local services and including the development of defined care packages •
to join the TOPS trial and commence speech recordings for recruited children
•
to evaluate the use of iPads in speech therapy
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Nursing
2012 bought new challenges to the Clinical Nurse Service with a steady rate of new referrals balanced against a reduction in available nursing hours. The commitment of the nursing team enabled new referrals to be assessed as a priority which impacted on other areas of care that the team provides, such as ongoing management of infants in the community, availability for ward rounds and clinics. There was also the ‘hidden’ impact of extra hours incurred. The on‐call service for weekend referrals was also affected with 1:4 weekends covered by telephone access only. This enables the team to provide expert knowledge with our referring units prior to carrying out a full assessment. Antenatal referral rates were maintained at 83% ‐ only incomplete cleft lip not being diagnosed. We also had an undisclosed pregnancy. This information has been verified with both WANDA and CAROBB. The audit for our antenatal referrals has indicated a disappointing first contact with the mother once the referral has been made. This is due to governance restrictions and patient confidentiality. We have now developed a new referral pro forma where the referrer gains consent from the mother that information may be left as a message on either a mobile or landline by our team. We will continue to receive telephone referrals to ensure a swift referral is made for the benefit of the women. Next year we hope to demonstrate an increase rate for initial contact. Cleft palate referrals to the team for our cleft palate only infants continue to indicate a 34% rate after 24 hours. Many of the infants are referred between 24 – 48 hours as per protocol for newborn checks. However, there are still significant infants referred after this period. National audit across the UK indicate a similar situation for other units. The CNS team held a ‘cleft awareness’ study day in May 2012. With venues at Salisbury Foundation Trust and The John Radcliffe Hospital we were able to provide a great day for colleagues across the region. The two days were highly rated by attendees with request for annual events. We were able to utilise the expert knowledge of our clinical colleagues and enabled the whole team an opportunity to share their knowledge. We hope to continue annual events to raise awareness of the work the nursing team provide. This will probably be with an event at each site alternate years as opposed to two on the same week! A huge thank you to both administration teams who provided their expert organizational skills on both days. The patient information booklets have been reviewed and edited and continue to be used for al new infant referrals. The nursing team has worked tirelessly to develop a new dental leaflet for families. We will work closely with the families highlighting the ended for oral health with further support at our 18 month clinic, ensuring children are registered with a general dental practitioner and providing further information and toothbrushes and feeding beakers. We have been supported by our local CLAPA in procuring these items for families. The nursing team has also developed an initial document we will use at our clinic to determine parental access to dental health and their experiences. We will hopefully develop this to obtain meaningful information. The future ‐ After recruitment in March the team will be fully established to the agreed hours. As a service we will be reviewing locality areas for all the team to ensure appropriate and best care.
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The on‐call referral system will also return to an available nurse for each weekend. Audit and research ‐ A team member continues to represent the service at national audit meetings held by the SIG group. We were also represented at the Bristol study day for The Cleft Collective. All the nursing team successfully completed their Good Clinical Practice training by April 2012. We will continue to audit to the agreed national standards and provide accurate information for the new quality Dashboard. As the Timing of Palatal Surgery (TOPS) study has goes live the nurses will start recruitment for this study. The Oxford team will continue to recruit for SPOCCL. The nursing team will continue to provide education at local, regional, national and international level.
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Dental health (incorporating orthodontics, paediatric dentistry and restorative dentistry) The restructuring of the NHS with the introduction of national commissioning of dentistry is likely to have a significant influence on the provision of services over the next few years. The majority of dentistry is currently provided on a local basis with direction from the MDT team centrally. The development of payment by results (PBR) will necessitate more formal contracting between hub and spook in the near future. The service has evolved over the last few years but it is recognised that further development is required particularly in restorative dentistry in Salisbury and more formal arrangements for paediatric dentistry at both surgical sites if we are to fulfil the requirements of the new national service specification which has now been agreed. We continue to produce good outcomes for dental health in 5yr olds which compare well with our TriCentre partners in the South West, South Wales and the West Midlands. We have looked closely at the worst performing areas and are targeting the most vulnerable groups through a dental health education programme introduced at birth through our clinical nurse specialists. Restorative services need development particularly to support young adults nearing the end of the care pathway. A recent development at the John Radcliffe in Oxford has been the introduction of a specialist clinic to provide dental prostheses to address persisting speech difficulties related to palate dysfunction. This is jointly provided by the consultant orthodontist/restorative dentist with the SLT team and technician support. It is hoped that this specialist service may also be extended to meet the needs of other patients, referred on a tertiary basis. Orthodontics is currently provided through a network of spoke orthodontists directed by the lead orthodontists in Oxford and Salisbury. We have been at the forefront of developing a national cleft orthodontic outcome using the Peer Assessment Rating (PAR) and a paper has been accepted for presentation at the forthcoming International Conference in Florida. We will continue to innovate and take part in research projects through the national research centre in Manchester. The use of De‐Clerk bollard anchors for early maxillary traction is currently be considered which would be an important development and useful clinical tool for the future.
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Appendix I – Tri centre Outcomes The quality of care provided by the NHS is top of the news agenda at the present time. Cleft services were reconfigured over 10 yrs ago and as part of that process a national database now hosted by the Royal College of Surgeons in London was established to register new births and promote audit reporting. The recent changes in the commissioning of health services in England will result in all speciality services having to produce outcome measures that can be easily understood and scrutinised by patients and parents. Cleft services will be one of the first wave of nationally commissioned services utilising the ‘Quality Dashboard’ which will be published. We have been involved for over 10 years in collaborative audit with the West Midlands and South West & Wales Cleft Centres which is known as the TriCentre Audit group. There are important milestones in child development which allow for the outcome of multidisciplinary cleft care to be measured and compared. The TriCentre group has gradually evolved a model of collaborative audit that has now been followed by other cleft centres throughout the UK. This year the annual meeting was hosted in Salisbury with a summary of the results presented below. A development this year was a workshop on patient and parent satisfaction of cleft services. This will hopefully become a regular feature of future meetings. The results below show a comparison mainly of 5yr old data from the 2005 birth cohort and are presented under the headings of the different specialities involved. Cumulative data is presented for previous years where available for comparison and as part of a process to establish a regional benchmark.
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1. 5yr Speech Outcomes ‐ 2005 Cohort There were 33 children who had speech records taken out of 46 children born in 2004. 13 children have unilateral cleft lip and palate (UCLP), 3 have bilateral cleft lip and palate (BCLP) and 17 have isolated cleft palate (CP). Each child attended a clinical review clinic during the year they were 5, where they completed a video‐recorded standard speech assessment. This recording was then assessed by a group of trained speech and language therapists, including therapists from outside of The Spires Cleft Centre, using a nationally adopted speech outcome measure. Speech Outcome Standards
Results Number
Comments %
1. By the age of 5 years at least 50% of children have
speech within the normal range.
19/33
58%
Achieved
2a) By the age of 5 years at least 70% of children have
speech with no evidence of a structurally related
26/33
79%
Achieved
b) By the age of 5 years 10% or less of children have
had further palate surgery and have no evidence of a
5/33
15%
Not Achieved
had further palate surgery and still have evidence of a 3/33 structurally related speech problem
9%
Achieved
d) By the age of 5 years 10% or less of children have
had no further surgery and have evidence of a
0/33
0%
Achieved
3. By the age of 5 years at least 50% of children have
speech with no evidence of speech sound difficulties
22/33
67%
Achieved
problem.
structurally related speech problem c) By the age of 5 years 10% or less of children have
structurally related speech problem
related to their cleft.
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Summary • •
• •
Two of the three national standards were fully achieved. 58% of the children have speech rated as normal at age 5 years which is above the national average of 50%. Over ¾ of the children (79%) have speech with no evidence of an ongoing problem with palate structure. This includes 5 children who have needed further palate surgery before the age of 5 yrs who now have good speech (15%). This is slightly higher than the target of 10% or less for this standard but does indicate that these children’s palate related speech difficulties were resolved by the age of 5 years. There are a small number of children who do still have evidence of an ongoing problem with palate structure at the age of 5 yrs (9%). We will review these 3 children’s cases to see whether any action could have been taken to resolve their speech difficulties earlier. Next year we plan to also report the outcomes of children at age 10 yrs and to continue to add to our data collected over the last four years.
2. 5yr Growth Scores The Spires participates in the national OSIG 5 yr index project. We had 18 eligible children with UCLPs this year and 11 records scored. The table below shows the scores returned for the whole centre. 5yr Index Score UCLP Births Records
Miss. Recs Group 4/5 1 2
3
4 5
2005
18
11
7
1
0 2
7
1 0
2004
15
12
3
2
1 8
1
1 1
2003
15
11
4
2
1 3
5
1 1
2002
13
7
6
2
0 2
3
2 0
2001
7
6
1
1
0 3
2
1 0
2000
17
15
2
4
1 8
2
1 3
Total
85
62 (72.9%) 23 (27.1%) 12 (19.3%) 3 26 20 7 5
Summary – We now have six consecutive years of growth results and the pattern emerging of about 20% of children with UCLPs potentially requiring maxillary osteotomy in the longer term. This is lower than the UK average of nearer 30% and 40% in the 1998 CSAG report. The percentage of records collected at 73% is higher than the national standard of 67%. Next year the 2006 cohort should add over 20 children with UCLP and be enough to assess individual surgeon’s outcomes with nearly 30 from both surgical centres in Oxford & Salisbury.
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3. Psychology Outcomes
This year’s audit looked at outcome data from patients and their families using a validated screening questionnaire, The Strengths and Difficulties Questionnaire, (SDQ) and audited the provision of the psychology service using nationally developed categories of psychology involvement. 1. Patient Outcome Data (SDQ) The SDQ is a standardised brief behavioural screening tool used in children’s mental health settings to screen children aged 3‐16 for behavioural problems such as emotional, conduct, hyperactivity/inattention and peer problems. A total score is generated which falls into one of three categories: Normal, Borderline and Abnormal. Using national expected norms for the general population, we would expect that 80% of respondents would fall in to the Normal category, 10% in the Borderline category and 10% in the Abnormal category. Tricentre Outcomes:
•
Parents reported higher overall problems than national norms at 5yrs and 10 yrs.
•
10 yr olds self‐report showed better outcomes than nationally expected norms.
2. Provision of Clinical Psychology in Cleft Care .The national Special Interest Group for Psychology has developed a measure of level of intervention (tiers) provided by psychologists for each service: 0 = Patient not seen in clinic 1 = Seen but no concerns 2 = Psychological needs met during clinic 3 = Seen in clinic, consultation work required outside of clinic 4‐6 = Outpatient appt offered (could be wait list) 7 = Therapy We audited the level of psychological intervention patients required at the age of 5yrs and 10yrs when attending the Clinical Review Clinic.
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Tricentre Outcomes:
5yr olds at Audit Point
10 Year at Audit Point
3%
11%
10%
0% 1 2
51% 35%
2% 1
14% 44%
2
3
3
4-6
4-6 7
7
30%
•
At 5 yrs, 49% of families required input at tier 2 and above
•
At 10yrs, 56% of families required input at tier 2 and above
Summary: •
Parents report greater levels of difficulties for their children at 5 and 10yrs than expected in the general population and when their child is 10 years old report higher levels than the 10yr olds report themselves.
•
Although the SDQ still shows that the majority of children fall within normal range, around half the families we see in clinic at age 5 and 10yrs require intervention for psychological concerns.
Future Directions: •
Further investigation into why children with cleft rate themselves as having a lower level of difficulties than their parents report and a lower level than the national average would be useful.
•
There is a need to develop a more sensitive patient outcome measure which reflects the level of need and the particular issues that we come across in cleft clinics. The national Clinical Psychology Special Interest Group has been working with the Bristol Cleft Collective Birth Cohort Study to decide the most appropriate psychosocial measures to use in their research. We are now planning to use a similar process to review our national audit measures and develop more sensitive measures of patient experiences and outcomes within the cleft population.
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4. 5yr Dental Health Results – 2005 Cohort Year
Births
No records
Caries free
Total dmft
Mean dmft
2004
101
66
45 (68%)
80
1.21
2005
49
30
19 (63%)
37
1.23
2000‐04 Cohort Spires Total
423
_
Records
274
64.77%
Caries Free
205
74.81%
Total dmft
286
_
Mean dmft
1.04
_
Reg BASCD
1.72
_
Summary ‐ The dental health scores for 2005 demonstrate an improving overall picture and combined with the previous 4 years data shows a better than mean score for the general 5yr old population. Children with UCLP/BCLP have generally higher than are desirable dmft score and we hope this would improve over the next few years as the influence of our early dental health preventative programme shows through. 5. Nursing Outcomes There were 96 new cleft and 18 non cleft referrals to the nursing service. 85% of infants with a cleft lip +/‐ palate were detected antenatally. The highest across the TriCentre. 86% of infants and their families were seen within 24hrs of referral. This was a slight reduction on the previous year but this may have been affected by prolonged adverse weather conditions. Cleft palate detection continues to be an area of concern with 34% of late diagnosis. However, many of these late referrals were made just after the 24hr standard. There are a small but significant group of much later referrals. This will be a priority for 2011/2012 and an area where we continue to audit and strive to improve.
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20% of babies with a cleft palate only had complex needs such as airway and feeding management in the community. There is an increase risk of gastro oesophageal reflux in all cleft babies but particularly with isolated cleft palate. This was reflected across the TriCentre group. Summary ‐ The nursing team try to accept all new referrals to the service within the defined standards of the referral pathway. There is some risk to the response time to see newborns if there are any reductions in available nursing hours or if there are adverse weather conditions. Infants with isolated cleft palates are being detected later than the newborn assessment. Infants with a cleft palate have a higher burden of care. 6. 5yr Appearance Outcomes – 2003 Cohort 31 images were received, most with pre‐op view to confirm UCLP. The images were cropped & coded, then assessed by 10 non‐surgical assessors on a 5 point scale: 5 Best, 3 average, 1 poor. Good inter‐rater reliability was noted, though the results have not been statistically validated. A database of cropped images with a codebook, plus the results has been setup to aid future audits. The chart compares the outcomes for surgeons over the three cleft centres involved for 2003 and the cumulative data for the years 2000‐2003. Using the colour coding, green represents the best outcome with red the worst.
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The 2003 results:
TCA Aesthetic Audit 2003 Pts F 5
S u rg e o n
E
4
D
3 C
2
B
1
A 0%
20%
40%
60%
80%
100%
F
E
5 4 3 2 1
D
C
Cadier
A
All
0%
50%
100%
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7. Casebook 2010 – Cumulative outcomes 2000‐2004 cohorts
Casebook provides a ‘snapshot’ of outcomes for the 5yr old cohort of children born with a unilateral cleft of lip and palate. It combines the data for speech, hearing, psychological development, aesthetic, facial growth and dental health using the colour coding system, green represents the best outcome with red the worst. Case No.
SLT res
SLT CTC's
ENT
Psy
Gro
Den
App
UC200301
0
0
No data
5
3
0
n/a
UC200302
3
1
No data
1
2
2
4
UC200303
1
1
5
3
2
0
4
UC200304
0
3
No data
1
3
0
3
UC200305
3
1
No data
5
3
2
5
UC200306
0
1
No data
5
2
0
5
UC200307
3
3
No data
No data
2
0
1
UC200308
0
1
No data
5
5
12
5
UC200309
0
2
No data
No data
4
12
3
UC200310
No data
No data
No data
4
3
0
3
UC200311
2
1
5
4
2
1
4
UC200312
No data
No data
4
No data
1
9
4
UC200313
1
3
5
3
1
3
UC200314
1
2
5
2
4
0
2
UC200315
No data
No data
5
5
4
0
3
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Appendix II – Centre Activity 2007‐2012 New referrals Cleft Salisbury Cleft Oxford Other referrals ‐ Salisbury Other referrals ‐ Oxford Total Cleft Total Non Cleft TOTAL Surgical Activity TG ‐ PSORH MC ‐ PSSDH VB ‐ PSSDH AC ‐ SSORH TF ‐ SSSDH TOTAL Clinic contacts Oxford Salisbury Total
2007 66 57 60
2008 55 39 60
2009 36 51 146
2010 51 45 171
2011 48 58 228
2012 52 47 139
38* 123 98 221 119 128 NA 3 33 283 722 704 1426
65* 94 83 177 106 131 NA 10 58 305 674 706 1380
41* 87 187 274 106 138 NA 1 44 289 644 789 1433
31* 96 193 289 143 82 53 9 33 320 644 833 1477
63* 106 291 397 154 127 NA 9 42 332 791 843 1634
131 99 270 369 151 149 NA 13 61 374 727 890 1617
*These figures were prior to refinement of data collection in Oxford
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Appendix III ‐ Objectives 2013 Commissioning National dashboards Tariff
These have been agreed nationally, we will be ensuring the data collection is fine‐tuned during the pilot year Further discussions will take place during 2013 to agree a national tariff for cleft – Spires will be involved in this decision making through the Cleft Development Group(CDG) and with specialist commissioners
Service improvement Spoke clinics
Review of spoke services to ensure continued quality and cost effective service provision These have appropriate apps for use in psychology and speech therapy
Evaluate the use of iPads in speech therapy Improving a way of identifying patients on these pathways who require Patients undergoing psychological intervention orthognathic and ABG surgery
Research TOPS Cleft collective study
Staffing Succession planning Finance Allocation and spend
To recruit to this international multi‐centre trial looking at the Timing of Palatal repair To recruit to this prospective collection of DNA of families which will study the genetic and environmental determinants of cleft lip and/or palate Plans for surgical succession will be a priority for Spires in 2013 to ensure continuity and maintain high quality of care across the service
Ensure the funding allocated to Spires supports the service provision
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