Spires Cleft Lip and Palate Centre Annual Report

2013

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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 Salisbury Foundation NHS Trust Headley Way Odstock Road Oxford Salisbury OX3 9DU SP2 8BJ

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Spire Cleft Lip and Palate Team

Stephen Robinson – Clinical Director / Orthodontic Consultant

Norma Patterson – Network Service Manager

Clinical Team – Oxford Clinical Team - Salisbury

Tim Goodacre - Primary surgeon 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

Sandip Popat – Restorative dentist Nichola Hudson – Lead nurse

Tina O’Neill – Specialist Nurse Maureen Warren – Specialist Nurse

Jane Sibley – Specialist Nurse Ginette Phippen – Lead Speech therapist

Emma Waterworth – Specialist Nurse Fiona Jeyes – Principal Speech therapist

Carrie Luscombe–Principal Speech therapist Sandra Treslove – Speech therapist

Lucy McAndrew – Speech therapist Catherine Caterall – Speech therapist

Leda Koutsoulieri – Speech therapist Cindy Williams – Speech assistant

Helen Piggott – Speech therapist Jane Lewendon – Clinical psychologist

Lucy Smith – Speech therapist Mary-Ann Brewer – Co-ordinator

Angela Shanly – Lead psychologist Teresa Rodgers – Cleft secretary

Sian Thomas – Clinical psychologist Janet Orriss – Cleft secretary

Steven Berry – Co-ordinator

Lorraine Linekar – Cleft secretary

Kayleigh Preston – Cleft secretary

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CONTENTS

Executive summary…………………………………………………………………………………………………..………4

Summary of achievements in 2013…………………………………………………………………………………..5

Management report…………………………………………………………………………………………………..…….6

Speciality Reports

Nursing…………………………………………………………………………………………………………………………….7

Surgery………………………………………………………………………………….…………………………………...……9

Psychology……………………………………………………………………………………………………………..………11

Speech and Language Therapy…………………………………………………………………………………..……16

Dental Health (incorporating orthodontics, paediatric dentistry and restorative dentistry) ……..18

Appendix

Appendix I Activity comparisons 2007-2013……………………………………………………………..20

Appendix II Objectives 2014/15…………………………………………………………….……………………21

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Executive Summary

The Spires Cleft Lip and Palate Centre has provided a regional specialist service for nine years. The

multiple services involved in the comprehensive cleft pathways continue to provide high quality care

for our patients in the ever evolving NHS.

In April 2013 NHS England was formally established and became responsible for commissioning

Specialist Services. One of the key elements in developing this new model of commissioning was the

creation of Clinical Reference Groups (CRG’s) who provide the primary source of clinical advice to

NHS England, with focus on scope of the service, patient pathways and improving quality of service.

In 2012 the development of the service specification provided the service with core and

recommended standards to improve quality and aim for excellence across all cleft centres. This has

now led to the development of the Quality Dashboard this year which reflect appropriate and

deliverable outcome measures, these are currently in a pilot phase and are reported at

commissioner/ Trust and service level, it is hoped these will be published on the Craniofacial website

www.craniofacialsociety.org.uk during 2014.

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 an opportunity to

measure ourselves against agreed national outcomes.

The role of research within cleft continues to be embedded in our work, Spires commenced

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. We have

already operated on some of these babies, and look forward to reviewing their speech development

post-surgery and contributing to this international study.

We are also taking part in the Cleft Collective Study, a large prospective collection of DNA from

family trios for the study of genetic and environmental determinants of cleft lip/ and or palate. The

Oxford site has been supported by the Thames Valley, Comprehensive Local Research Network and

hope to recruit a Research assistant early in 2014, followed later in the year by Salisbury.

Salisbury was sad to see the folding of the Wessex branch of CLAPA, which was always extremely generous to Salisbury cleft service, with funding and equipment, for which we were very grateful. Spires Cleft Centre will continue to liaise with the National CLAPA group, around areas of collaboration, mutual support and funding.

A summary of The Spires Centre achievements for 2013 follows.

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Summary of achievements in 2013

Research

Supporting parents of children with cleft lip (SPOCCL) – research to explore the early relationships between mothers and babies with cleft lip

Louise Dalton with Lynne Murray, Alan Stein & Tim Goodacre

Initial recruitment to TOPS (Timing of Palatal Surgery). Multicentre International trial run from Manchester

Nursing/ Surgical team

Minor structural abnormalities in the infant face disrupt neural processing: A unique window into early caregiving responses, Journal - Social Neuroscience

Christine E Parsons, Tim Goodacre et al

Outcomes in facial aesthetics in cleft lip and palate surgery: A systematic review, Journal - JPRAS

V.P. Sharma, M.C.C. Cadier, T.E.E. Goodacre et al

Measuring Outcomes in Craniofacial and Pediatric Plastic Surgery, Journal – Clinics in Plastic Surgery

Karen W. Y. Wong, Tim E. E. Goodacre et al

Oxtex self- inflating tissue expander project move to authorised use for veterinary conditions. Human trial projected for 2015.

Marc Swan & Tim Goodacre

Contributed to development of cleft specific questions for parents and reviewed appropriateness of psychology questionnaires proposed for use by Cleft Collective.

Spires Psychology Team in collaboration with National Psychology SIG

Education

Publication of Speech Therapy in Cleft Palate and Velopharyngeal Dysfunction, J&R Press

Speech therapy team

Three members of the speech therapy team are currently involved in post graduate study at University of Sheffield

Speech therapy team

Teaching Doctoral Clinical Psychology trainees Sian Thomas/Jane Lewenden

On-going regional education programme for paediatric/ specialist nurses & midwives

Nursing team

On-going regional and national education programme for Surgical (Plastics and Maxillofacial) and Paediatric trainees

Spires Clinical team

Audit

Tri Centre Audit – collaborative audit between 3 of the NHS England designated cleft centres, pooling data and sharing outcomes to improve the quality of care. This then links to national programme with other centres and in the future Quality Dashboard.

Spires clinical team

Patient experience

Trial of NOSI (Nasal Obturator for Speech Improvement) Ginette Phippen

Telephone screening for psychology referrals Psychology team

Database for psychology referrals, waiting times and intervention required established in Oxford

Oxford psychology team

Re-introduction of psychology at spoke clinics Oxford psychology team

Integration of secondary care pathway admin process into Spires admin team Oxford and Salisbury teams

Support and funding for patient equipment and activities Wessex CLAPA

Bi-annual out- patient surveys Spires Clinical team

Contributions to national policy/ committees, eg Clinical Reference Group, Cleft Development Group – development of National Service Specification and Quality Dashboard

Steve Robinson, Tim Goodacre, Nichola Hudson

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Management / Administration

This year has brought with it a variety of challenges and developments within Spires Cleft service.

The development of the quality dashboard has made us focus on our quality of data collection and

data entry. The process and paper trail have been reviewed and robust systems are now in place to

ensure a high standard of data quality for use in the dashboard and in all aspects of audit.

Having both the service specification and quality dashboard to drive improvements in the quality of

our service has provided some leverage for the service. As an example, the outcome measure for

hearing assessment has supported our request for additional audiology at our audit clinics at

Salisbury. In Oxford a problem with cleft procedure codes impacted on the data extracted centrally

from the Trust which required additional validation this is now being addressed by the Trust.

At our Salisbury site our secondary surgeon Tim Flood decided to ‘retire and return’ this year, with

his ‘return’ contract providing primarily cleft care. This then gave us an opportunity to review the

admin and secretarial support for the secondary care pathway which had always been provided by

the oral surgery department. The outcome of this resulted in the integration of the secondary care

pathway into the admin process of the main Spires Cleft admin team.

Similarly in Oxford due to vacancies in the oral surgery admin team that supported the orthodontic,

maxillofacial and restorative dentist, the secondary care pathway was also integrated into the main

Spires Cleft admin team which has greatly improved the communication between the clinicians and

the wider team and improved elements of patient care.

In Oxford, our primary surgeon Tim Goodacre has advised us of his pending ‘retire and return’ plans

for April 2014, and plans are being put in place to recruit for this post, although we hope to have Tim

with us for a while before he takes up full time retirement!

The team have started preparations towards the Annual Scientific Craniofacial Conference which will

take place at Keble College, Oxford in April 2014. We look forward to welcoming our colleagues from

the national and international cleft world to join us where we plan ‘To Inspire and to inform’.

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Speciality Reports

Nursing

Staffing

There have been staffing changes in the Oxford team during the year and at times this has had an

impact on the workforce. Despite this and mainly down to the team’s commitment to our families

we have continued to provide a 365 day service throughout the year.

In June we recruited a new member to the team who commenced on 0.4 WTE but by January next

year will increase to 0.6WTE which will mean the nursing team will be up to full establishment.

Antenatal

Our antenatal referral rates were noted to have a mark decline from 83% to 62% detection, which

falls well below the recommendation of 85% set by the Fetal Anomaly Screening Programme.

However, we did have an increased number of incomplete cleft lips in this cohort and two babies

that had been detected but not referred. Our mothers who are referred to the Oxford site continue

to be offered MRI at 34 weeks for absolute diagnosis of a cleft palate.

Having audited the results of our 2012 antenatal outcome measure ‘ A Clinical Nurse Specialist will

contact the parent/s within 24 hrs of antenatal diagnosis of CLP’ we addressed the pathway and

increased our contact from 52% to 82%. This contact and subsequent visits enables the mother and

family to receive accurate and specific information pertinent to them and allows the CNS to tailor

their advice and support to meet the needs of each individual family. We also identified that some

parents following the 20 weeks scan who go on to have amniocentesis choose not to be contacted

within 24hrs, preferring to wait until they have the results of the amniocentesis, whilst these

numbers are small they are not considered an exclusion to this outcome measure.

Cleft palate only

The referrals to the team for infants with a diagnosis of cleft palate indicate a marked decrease of

late diagnosis. This year we recorded 85% of babies were diagnosed within 24 hrs compared with

71.5% in 2012. This is the first year where detection has been significantly improved. However, the

remaining 15% of infants are diagnosed late with a small number detected after a month and some

over a year. We should not under estimate the impact on families where a later diagnosis is made.

This may include multiple visits to clinicians outside the cleft team prior to diagnosis, this can

inevitably result in a feeling of not being listened to by health professionals. Some babies may

require higher nutritional feeds due to faltering weight and maternal bonding can also be affected.

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The percentage of late referrals remains a concern nationally and we have provided information and

data to the working party at the Royal College of Paediatrics and Child Health to agree a national

protocol for the examination of the newborn palate, this work should be completed by late Autumn.

The data for 2013 shows two infants were diagnosed within 24hrs, sent home and then referred.

One of these infants subsequently was admitted to neonatal care for management and appropriate

discharge planning. We also had one family who diagnosed their own child within the 24 hr period.

The nursing team continue to provide education to our colleagues in the referring unit especially for

diagnosis of cleft palate in the newborn so we hope that these figures will continue to improve.

Education

The Spires nursing team hosted the national Specialist Interest Group for Clinical Nurse Specialists in

October. We also continue to represent Spires at local, regional and national meetings and provide

educational events across the network ensuring best practice within the hospital setting and

community.

The Lead Clinical Nurse Specialist attended the 12th International Conference in Florida and

presented a paper to the International nurses group on the Implementation and Development of a

Nursing Team in a designated UK service. While attending the conference she was invited by

Professor Gunvor Semb, Chair of The International Task Force Team, to become a member of the

International Task Force on – ‘Improved infant feeding’ . This international nursing group is

developing a programme for feeding initiatives in the developing world. Progress on this project will

be reported next year.

Objectives for 2014

To continue to focus on education particularly in our maternity units and Universities

A member of the nursing team will be submitting a paper to national conference Oxford 2014

Agreed protocol for management of infant with Robin Sequence and referral to appropriate

ophthalmologists

Attendance at the International Consensus meeting on Robin Sequence, Netherlands October

Nichola Hudson Lead Nurse

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Surgery

Surgical activity for our children and adults is almost entirely run with planned elective admissions,

although occasional urgent or unplanned procedures can require additional operative time.

However, we are constantly running at a near capacity level of booking, and in the past year have

spent much time considering how better to manage the caseload on a longer-term basis. The mis-

match between demand and supply of surgical time is most acute at the Salisbury hub, but it is

hoped that relatively minor ‘tweaking’ of the service provision along with some ‘backfilled’ sessional

time from a new appointment in 2014 might alleviate the situation permanently. For the year 2013,

the team pulled together and weathered the impact of some unanticipated service disruptions

including national epidemics of childhood illness as well as some surgeon related absence.

Two ‘high spots’ of the year were our attendance and presentations at the National Craniofacial

Society annual meeting in Birmingham (April) and the quaternary International Cleft Meeting in

Florida (May). At the National meeting, our team presence was considerable, with several papers

presented alongside an invited presentation by TG on the outcome of the James Lind Alliance cleft

research Priorities Setting Process which he had been the initiator of some two years previously. The

JLA ‘top 12 priorities’ were the final product of a process that had begun with the invitation of a

small steering group from the specialty. A further keynote lecture was given by visiting Professor

Anne Klassen from McMaster University, Canada, on the development of a cleft specific Patient

Reported Outcome measure – to be termed Cleft Q, that TG had also been instrumental in

generating and was one of 5 core steering group members. A poster presentation of the work of our

MSc student, Jenaleen Law from Australia, on the prevalence of associated genetic conditions within

our cohort of children over a period of 15 years, was well received. (post conference report; JL was

awarded her Oxford MSc by Research in May 2014).

The 12th International Congress on Cleft Lip/Palate in Orlando, Florida, was well attended by our

team, and TG had 5 presentations of material (one personally delivered on the work with Lynne

Murray and Louise Dalton). The team were most grateful to the Network for facilitating the time to

meet with international colleagues and share ideas and perspectives in a unique setting that is only

possible every 4 years. Despite the fact that as a setting for the conference, Disneyland left a lot to

be desired (the A-V facilities in particular in the Hilton hotel were dismally poor), the meeting was

enormously valuable, not the least for the international links made and novel ideas brought back

home for future consideration here. The final Friday was crowned by the UK team winning the vote

to host the 2021 Congress in Edinburgh, against stiff competition from Japan and Australia. This will

be the first time that the International meeting is held in the UK, and congratulations go to Felicity

Mehendale of the Edinburgh unit for galvanising such a successful bid.

Other overseas highlights of the year included the opportunity for TG to present the Unit’s cleft work

in Bangalore in March (a half day meeting), followed by the invitation to be Keynote Lecturer at the

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Chinese Smile Angel Foundation’s 4th International Symposium on new technologies in Cleft Lip &

Palate. This short visit to Beijing (the first for TG) proved to be an outstanding opportunity not only

to share ideas from our work, but also to visit the new hospital built for cleft care in that city by the

Foundation. He was also invited to join two distinguished Chinese surgeons from West China and

Taiwan as they demonstrated difficult bilateral cleft repair in the operating theatre.

A busy summer period of clinical work was interspersed by a two holiday breaks; a short pure

vacation, and a 10 day visit in October to Uganda, and the Congo where cleft services are minimal.

An unexpected moment in the visit to Bukavu in East Congo was meeting the most senior surgeon

who greeted with enormous enthusiasm having only read of our past work, and who delivered a

truly humbling presentation on the current state of surgical services in that lately war torn part of

the world.

The close of the year saw work alongside the network team leaders to create an innovative and

flexible job plan and process for a new appointee, which would enable TG to reduce some sessional

commitment alongside supporting MC in Salisbury with some additional ‘backfilled’ sessions. This

development to be enacted in 2014 is much needed!

As always, the surgical activity can only function with the considerable support of every other

member of the team, and especial thanks go to the hard working administrative teams in both

centres, the nurse specialists who never stop travelling in support of the children, and the other

disciplines who ensure that the service we offer to our cohort of families is second to none.

Tim Goodacre Consultant Plastic Surgeon

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Clinical Psychology Service

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.

Staffing and Clinics Lead Psychologist for Oxford Spires is currently Angela Shanly, who is standing in for Louise Dalton,

(currently on a two year Career Break, engaged in Research on CLP – see below). Angela works one

day a week as Lead, providing supervision and an overview of the Clinical Psychology Service from

Clinical and Audit perspectives, for Salisbury and Oxford. She also works one day a week clinically in

Oxford, with Sian Thomas, who in 2013 has worked two days a week, until September, when she

increased to three days a week. Helen Care who previously worked in the Cleft team returned from

Maternity Leave, but to work only in the Craniofacial Service, from September. We were sorry to

lose her from the CLP service and wish her well for the future. Jane Lewendon continues to do

approximately four days a week in the Salisbury service. All staff work flexibly over the whole week

rather than on specific days.

In Salisbury, Jane attends the majority of hub and spoke clinics and is available for consultation for

the pre- and post-op clinics, and the new baby clinic, when needed. In July of 2013, the psychologists

resumed attendance at the Swindon and Milton Keynes clinics, having processed a backlog of

referrals from 2012, due to the staff shortage at that time. From September, with Sian Thomas

increasing her hours, we were able to cover the Slough and Reading Spoke clinics as well. There is

currently an 18 month Nursing/SLT and Psychology clinic running in Salisbury, which we plan to re-

establish in Oxford in 2014.

General Developments A continuation of a development initiated at the end of 2012 this year has been the use of

Telephone Screening when referrals have been received from our CLP colleagues, in order to make

sure that clients were aware of the referral, to clarify what help they needed, to give them options

around who attended the initial meeting (either individual/parents/family), and to identify a date,

time and location that was convenient. The telephone screening system has been successful in

increasing the numbers of whole families who prefer to be seen, and in reducing DNAs to initial

assessments. It has also enabled identification of patients who needed simple advice on the

telephone, thus avoiding the time and travel involved in a face to face appointment. Sometimes a

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series of appointments has been offered to parents by telephone over a number of months, which

would not have been possible face to face due to travel constraints.

We have had a number of joint Nursing and Psychology meetings in order to increase collaboration

and to have a greater understanding of our different roles, and potential overlap. It has been agreed

to facilitate a joint Study Day next year, for Radiographers and other Medical and Nursing staff

around the topic of sensitive ante-natal diagnosis of CLP. One of the National Standards for Clinical

Psychology, Standard 20, which recommended that Clinical Psychologists see all CLP babies by the

age of 1 year, was dropped after a National Audi Review in June 2013, but we will continue to see all

babies with a cleft lip in Oxford, at the age of 3 months, prior to their lip repair. In Salisbury the

psychologist aims, where possible, to see all new families prior to their cleft repair,. Clinical

Psychology and Nursing teams often work closely together in the first year, where their work

complements each other.

In both Salisbury and Oxford, there has been a focus on identifying the number of babies with 22q11

syndrome, who often have a cleft palate. As Clinical Psychologists we are frequently asked to

provide consultation to parents of children with 22q11 deletion syndrome, and other complex

conditions, where the burden of care can be great, and there is rarely a service offering this kind of

support and specialist psychological advice. We are identifying the need to provide clear signposting

to other services, and in Oxford are considering the feasibility of running a joint 22q11 assessment

clinic with the local Paediatricians. We recognise that there are a significant proportion of babies

with CLP or CP only, ( in addition to those with 22q11 deletion syndrome) where there are complex

problems in the early stages, which often require special educational input and other specialist

resources as the children develop.

The Alveolar Bone Graft pathways have been identified for each discipline in previous years, and the

Salisbury team has been developing a Child-Centred Care Pathway. It is hoped to create a similar

pathway in Oxford. A similar process is being started for the Orthognathic Care Pathway and it is

hoped to establish joint Speech and Language Therapy, and Clinical Psychology databases whereby it

is possible to keep track of where a patient is in the pathway, and who they need to see next. It has

been a challenge over the years to make sure that patients are seen as required by the protocol. We

are anticipating that secretarial support for dentists and orthodontists being provided ‘in-house’ by

the CLP Administrative teams will facilitate better identification of patients’ needs with respect to

these procedures, and improved liaising with SLT and Clinical Psychology.

This year we have had discussions with the Administrative team, and Service Manager about keeping

more comprehensive data regarding our activity which would require adaptations to the Electronic

Patient Record system – Excelicare. Currently the main information recorded is for the purpose of

National Audit, this provides information on the level of Psychology input provided in the Multi-

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Disciplinary clinics. We hope to keep much more detail in the future of the types of referrals we

receive, from whom, the types of problems people present with, how often we see people and

ultimately, we hope, some measures of effectiveness.

As described last year, there has rarely been take up of groups offered at what seem to be key

stages for children and their families: aged 7-8, when appearance issues can become more

predominant, and at the transition to Secondary School. We have not pursued this any further this

year, but will be considering what might be possible in 2014 in terms of talking to families about

what might work for them.

The online CBT and social skills programme for adults with appearance issues, Face It continues to be

used by some patients, and the Face It programme for children continues to be developed by the

University of the West of England. These programmes are particularly useful for patients who find it

difficult to travel to the hub site for individual therapy.

Education and Training

Both Sian Thomas and Jane Lewenden have provided teaching on CLP issues to Doctoral Clinical

Psychology trainees in the Oxford and Bristol training courses respectively, and we plan to

collaborate with Nursing Staff re a workshop for radiographers in 2014 ( see above).

National Audit:

The Spires Clinical Psychology Service continues to work with the Psychologists in the National

Special Interest Groups to look at ways of capturing concerns and difficulties, in particular though

review of audit protocols. We contributed to and attended the Tri-Centre Audit in June, and

Representatives of the Psychologist SIG attended the National Review of Audit measures in the same

month, in an attempt to streamline and make meaningful our National data collection.

At this National workshop the CLP Psychology SIG was tasked with researching types of measures

which would be useful for all CLP services to evaluate Patient Satisfaction, in order to meet National

Audit guidelines. The SIG has developed questionnaires, to be piloted in 2014, based on the Friends

and Family Measure, and adapted for the CLP service setting. The intention is to create

questionnaires which are age-appropriate, child and parent-friendly, and can be done in either paper

or electronic form.

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Research:

The National SIG continues to work with the Bristol Cleft Collective in developing psychological

measures in their longitudinal research with CLP families. Spires has agreed a way forward to

participate in the research as a Centre, and it is hoped that this will start in 2014. Thames Valley

Comprehensive Local Research Network (CLRN) have agreed to fund a research assistant post for

this study who will support the team with sample and data collection, including an extensive battery

of questionnaires on psychological and family issues.

Louise Dalton is currently engaged in Research in CLP, which she reports on below: Supporting Parents of Children with Cleft lip – SPOCCL, University of Oxford and University of Reading: Chief Investigator Professor Alan Stein

SPOCCL is a research study looking at different ways to support parents in the first few weeks after

their baby has been born with a cleft lip (with or without a cleft palate). The Spires Cleft Centre has

been closely involved in the development of this project, which is being led by colleagues from the

Universities of Oxford and Reading, and is one of the main cleft centres from which potential

participants are invited to take part. The study is comparing two different types of treatment,

offered by a research psychologist to mothers and their babies at home. Mothers who decide to

take part in the study are randomly allocated to either ‘Watch & Discover’ or ‘Support, Information

& Advice’ and receive six sessions of input before their baby has their first operation.

Watch & Discover involves making short films of the mother and baby playing together or doing

everyday things. The research psychologist (Dr Louise Dalton) then looks at the videos together with

the mother and shares particular moments illustrating the baby’s developing understanding of the

world and emerging facial and social signals. There is also an opportunity for the mother and

psychologist to talk about what to expect in terms of their baby’s development over the forthcoming

week.

SIA offers mothers a therapeutic space amongst the busyness of life to reflect on whatever issues

feel most pertinent to them. Many mothers use this as a chance to reflect on being a parent and

adjustment to this new role, coping with older siblings or the particular experience of parenting a

baby with a cleft lip. The research psychologist is able to offer specific psychological advice and

support to help manage any concerns that the mother may have.

Following completion of the therapy sessions, mothers and babies are then seen for a review at 11

weeks, 9 months and 18 months by an ‘independent’ assessor, Dr Leonardo d’Pascalis (who is

unaware of the treatment the mother has received) so that the research team can follow their

progress.

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The research team are delighted that the feedback to date from participating mothers has been very

positive. The acceptability of the treatment to mothers is also indicated by the absence of any drop-

outs from the study. This is particularly pleasing given that the study is conducted during the first

weeks of a baby’s life, which is such a busy, exciting and challenging time for parents.

The research team hope to continue recruiting new parents to take part in the research over the

forthcoming year, and are particularly grateful to the Clinical Nurse Specialists for introducing the

study to potential new participants.

www.spoccl.org.uk

SUMMARY

Spires Cleft service ended 2013 providing cover to the majority of central and spoke clinics, and has

been available flexibly to provide telephone consultation and face to face consultation to patients

and their families presenting with a wide range of mainly cleft-related difficulties. We are pleased

that we have been able to be so responsive and effective and will continue this in 2014.

Our aims in 2014 are:

To continue to provide cover or access to a Clinical Psychologist for all clinics

To continue to provide quick response for additional requests for psychological input to patients and consultation to our CLP colleagues, in a flexible way

To restart the 18 month clinic in Oxford, to match the service provided in Salisbury

To continue to develop patient focused ABG and orthognathic care pathways, and the systems and databases for making sure that patients are signposted in a timely fashion to the next stage of the pathway

To develop databases which can keep meaningful data about our Clinical Psychology activity Ms Angela Shanly Consultant Clinical Psychologist and Family Therapist Lead Psychologist

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Speech & Language Therapy

Staffing

The Speech & Language Therapy team at both Salisbury and Oxford has been fully staffed during

2013. There will some changes in Oxford in 2014 with our Principal SLT taking maternity leave in

addition to another team member moving on to a new post. This amounts to a 1.3wte reduction; 0.6

permanent and 0.7 temporary. We hope to recruit to the permanent sessions quickly and to cover

the maternity leave with a temporary post.

Achievements

The cleft SLT handbook written by the team is now in print and available from J & R Press

and Amazon. The book is primarily aimed at community based therapists and can be used as

an educational guide for speech and language therapy students. It can also be of value to

families who want to know more about how to help their child if they have speech or

feeding difficulties related to cleft palate or palate disorders. In addition the book includes

valuable feedback from children and families about their experience of speech therapy. The

team now plan to follow up with the production of two DVDs for parents entitled ‘Show me

a Sound’ and ‘Say and Play Together’. These DVDs will demonstrate activities to promote

speech and language development in very young children. Video footage has already been

taken for these resources with the kind cooperation of families from the Oxford site.

The iPads generously funded through a patient donation to CLAPA Wessex are now being

used routinely to support direct speech therapy as well as with children when they are

undergoing medical investigations and procedures. Evaluation of the use of the iPads is

being carried out.

A simple and innovative new prosthetic treatment for nasal speech has been developed in

partnership with maxillofacial technicians in Salisbury. The NOSI (Nasal Obturator for Speech

Improvement) is suitable for both children and adults with a wide range of conditions that

affect palate function for speech. It is being trialled with a small number of patients with the

hope that it will offer a low-cost, low-burden alternative for patients who are not eligible for

surgery or other forms of prosthetic treatment. The Innovation service at SFT is supporting

the NOSI development, with plans for a trademark application and discussion regarding

production using 3-D printing.

Three team members are currently involved in post-graduate study with the University of

Sheffield.

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Research

The SLT team continues to be actively involved in research:

1. TOPS (Timing of Primary Surgery) – pilot speech recordings have been completed and trial

recordings commenced.

2. Cleft Collective – Lead SLT appointed as Principal Investigator. Oxford R&D approval has

been gained for the study and recruitment of an Oxford Research Assistant is underway with

funding from Thames Valley Local Clinical Research Network. This process will then be

started in Salisbury.

3. SLT Intervention Studies group- we are represented on this group, in partnership with the

Healing Foundation and University of Sheffield, with plans for the submission of a

programme grant application.

4. MSc project to examine the relationship between the type of cleft and the presence of

middle ear effusion or hearing loss in babies between 3 and 6 months of age and whether

parents/carers are accurate in their assessment of their child's hearing ability.

Quality

The team monitors service delivery using an annual self-evaluation cycle framework which includes a

range of service areas and performance indicators. This is modified each year to reflect priority areas

and has developed a culture of critical thinking and peer review, with an expectation that existing

service models will be challenged on an on-going basis. This year there is a focus on expanding

provision of group and intensive therapy and evaluating the effectiveness of these approaches. In

addition, criteria for specialist outreach provision by the team are under review, in order to

maximise impact and efficiency.

The priority objectives for 2014 are:

1. To maintain effective service levels in Oxford during recruitment to vacant post and

forthcoming maternity leave.

2. To complete the DVD project by producing two parent resource DVDs to support speech and

language development.

Ginette Phippen Lead Speech & Language Therapist

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Dental Health (incorporating orthodontics, paediatric dentistry and restorative dentistry)

The development of a national service specification by the Clinical Reference Group (CRG) has

resulted in a review of our current dental services this year. We have an existing dental health

programme developed after the Spires was first designated in 2004. This was largely based our own

concept about an ideal dental service to support a multidisciplinary cleft service. The national service

specification is a consensus view on what core dental services are required and what are desirable.

We were able to fulfil most of the criteria but we lacked a comprehensive paediatric dental service

across the network and a specialist in restorative dentistry in Salisbury. We have always had access

to these services in the community setting but the new national service specification means they will

now be designated service developments for the future. We are one of the two NHS England cleft

networks not to have a university dental school in the region (the other being Cambridge – Cleft

Network East) which does influence access to specialist dental care and we will have to look at

innovative models of delivery to fill the gap in the future.

A Quality Dashboard (QD) has been developed in parallel with the national service specification to

allow parents and patients to compare the quality of services provided by the different centres.

There are 12 outcome and process measures on the QD with 2 specific dental measures included.

These are a measure of dental health for 5 year olds (DMF – decayed, missing and filled teeth) and

the orthodontic peer assessment rating (PAR) which is used to measure the outcome of orthodontic

care in the permanent dentition. The QD covers all aspects of multidisciplinary cleft care and will

evolve over the next few years to include parental and patient views. It is due to be published on a

Department of Health website in the near future.

The pressures on the surgical service with increased referrals following the closure of the Poole Cleft

Unit has meant more MDT clinics being held centrally with more responsibility being taken by our

spoke orthodontists who work with the team. Retirements and changes to commissioning will

probably influence further restructuring in the future as the service evolves.

We have developed a cleft orthodontic training scheme that has been admired and copied by the

other UK cleft centres. This exposes the trainee to the spectrum of work carried out by the MDT

team rather than concentrating on orthodontics alone and hopefully will produce a more holistic

approach to care in the future.

Research is an important area of our work and we were fortunate this year for one of our SPR

trainees to present her work on PAR scores in cleft orthodontics to be presented at the International

meeting in Florida in May.

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Future developments as discussed previously will include fulfilling the requirements of the national

service specification through a paediatric dental network and improving our access to specialist

restorative dental advice and treatment where required. This will be particularly important for the

adult cleft service which has grown significantly over the last few years.

Steve Robinson Lead orthodontist/ Clinical Director

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Appendix I – Centre Activity 2007-2013

New referrals 2007 2008 2009 2010 2011 2012 2013

Cleft Salisbury 66 55 36 51 48 52 45

Cleft Oxford 57 39 51 45 58 47 59

Non cleft - Salisbury 60 60 146 171 228 139 148

Non cleft - Oxford 38* 65* 41* 31* 63* 131 124

Total Cleft 123 94 87 96 106 99 104

Total Non Cleft 98 83 187 193 291 270 228

TOTAL 221 177 274 289 397 369 332

Surgical Activity

Primary - ORH 119 106 106 143 154 151 157

Primary - SDH 128 131 138 135 127 149 160

Secondary - ORH 3 10 1 9 9 13 17

Secondary - SDH 33 58 44 33 42 61 42

TOTAL 283 305 289 320 332 374 376

Clinic contacts

Oxford 722 674 644 644 791 727 793

Salisbury 704 706 789 833 843 890 811

Total 1426 1380 1433 1477 1634 1617 1604

*These figures were prior to refinement of data collection in Oxford

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Appendix II - Objectives 2014

Education Craniofacial Scientific Conference 2014

Oxford will be hosting this conference in April at Keble College and look forward to welcoming delegates from the national and international world of cleft and other craniofacial anomolies

University of Sheffield Completion of current post graduate studies in the speech therapy team

Commissioning NHS England To continue to work with colleagues in CDG/CRG to meet objectives set

out in A3 Change Proposal for specialised services

Service improvement Production of two parent resource DVD’s

To support parents with their children’s speech and language development

Research TOPS Timing of Palatal repair – pilot speech recordings completed

Cleft collective study To recruit to this prospective collection of DNA of families which will study the genetic and environmental determinants of cleft lip and/or palate

Staffing

Succession planning Plans for surgical succession will continue to be a priority for Spires due to the age profile of our consultant staff

Speech – vacant post and maternity leave

To maintain effective service levels during this period

Finance

Allocation and spend Ensure the funding allocated to Spires supports the service provision