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2015/16 ANNUAL REPORT Children’s Hospitals Network Page 00

TitleOxford University Hospitals

NHS Trust

Children’s Hospitals Network

oxford and southampton

Annual Report 2015/16

University Hospital SouthamptonNHS Foundation Trust

Providing a sustainable Clinical Network Delivering healthcare to patients requiring Specialist Services


www.oschn.nhs.uk


Introduction 2Message from our Clinical Directors 3About us 5Sharing Best Practice 6The regions we cover 8Our ambition and vision for success 9Our patients 10Our Clinical Networks 18Children’s Cardiac Network (ODN) 18Children’s Neurosciences Network (ODN) 20Children’s Critical Care Network (ODN) 23Children’s Rehabilitation Network 25Children’s Orthopaedics Network 28Children’s Rheumatology Network 30Other Network News 31Conclusion 36

Contents

ANNUAL REPORT 2015/16Page 02 Children’s Hospitals Network

The Children’s Hospitals Network formed in 2012 following a review of national specialist services, linking Oxford University Hospitals NHS Foundation Trust (OUH) and University Hospital Southampton NHS Foundation Trust (UHS), to form a regional Network focussing on Children’s Specialist Services. The CHN currently encompasses Cardiac, Neurosciences, Critical Care, Rehabilitation, Orthopaedic and Rheumatology specialties, with further services planning to join this innovative Network.

This is the third Annual Report which reflects on the developments that have taken place during 2015 and focusses on the priorities for the coming year.

Introduction


Message from our Clinical Directors

Dr Karen SteinhardtClinical Director of Children’s Services

Oxford University Hospitals NHS Foundation Trust

Dr Alyson O’Donnell Divisional Clinical Director for

Women and Children University Hospital Southampton

NHS Foundation Trust

The Children’s Hospitals Network has been in existence for more than three years and prior to this Oxford and Southampton Trusts have worked collaboratively for much longer. This has strengthened relationships and enabled us to develop our understanding of what works well and how we can share best practice.

This past year has continued to be a challenge for all Trusts and Hospital Services, with further financial restraints and ever increasing demands on our services such as Accident and Emergency which are often highlighted in the UK media. Despite the challenges we have continued to see the benefits of working collaboratively and we are inspired by the innovative ideas and projects that have been achieved by our teams.

2015 also solidified the hard work that had taken place previously when we were nominated to host Operational Delivery Networks for three of our services. This is a good step forward as this provides the opportunity to involve our stakeholders much more and will enable us to ensure that patients receive the best standard of care and are seen as near to home as possible. You can read more about Operational Delivery Networks here http://www.oschn.nhs.uk/operational-delivery-networks/

With 2016 underway we are reviewing our strategy for the future and we are committed to delivering world class clinical outcomes comparable with the best hospitals nationally and internationally.

The first Network of its kind…


University Hospital Southampton NHS Foundation Trust

As the major university hospital on the south coast, University Hospital Southampton NHS Foundation Trust provides the full range of tertiary medical and surgical specialties, with the exception of transplantation and burns, to more than three million people in central southern England and the Channel Islands.

UHS is a centre of excellence for training doctors and nurses of the future and developing treatments for tomorrow’s patients. Its role in research and education, developed in active partnership with the University of Southampton distinguish it as a hospital that works at the leading edge of healthcare developments in the NHS and internationally.

Every year our 10,550 staff:• treat around 140,000 inpatients and day patients,

including about 50,000 emergency admissions;• see over 500,000 people at outpatient

appointments; and• deal with around 110,000 cases in our emergency

department.• Providing these services costs more than £1.6 million

a day.

Oxford University Hospitals (OUH) is a world renowned centre of clinical excellence and one of the largest NHS teaching trusts in the UK. We became a Foundation Trust on 1 October 2015 and believe that this will enable us to work more effectively in partnership with our patients and our local community to provide high quality healthcare. The Trust is made up of four hospitals – the John Radcliffe Hospital (which includes the Children's Hospital, West Wing, Eye Hospital, Heart Centre and Women's Centre), the Churchill Hospital and the Nuffield Orthopaedic Centre, all located in Oxford, and the Horton General Hospital in Banbury, north Oxfordshire.

We provide a wide range of clinical services, specialist services (including cardiac, cancer, musculoskeletal and neurological rehabilitation) medical education, training and research.

Most services are provided in our hospitals, but over six percent are delivered from 44 other locations across the region, and some in patients' homes.

In 2014/15 we had:• 1 million patient contacts• 114,000 planned admissions• 89,500 emergency admissions• 130,000 emergency department attendances• We also delivered 9,000 babies• We employ 12,163 staff (including 3,800 nurses

and 2,000 doctors) and our total turnover in 2014/2015 was £916 million.

The Children’s Hospitals Network is a partnership between Oxford University Hospitals NHS Foundation Trust and University Hospital Southampton NHS Foundation Trust, but it connects with over 20 District General Hospitals, sharing patients, clinics and services.

About us


Since the launch of the CHN in 2012, the Network has continued to develop and is always keen to find further opportunities to collaborate and to share best practice, expertise and resource. Working in this way has presented innovative and beneficial opportunities for the services and patients across the Thames Valley and Wessex regions.

Sharing Best Practice

West Midlands Critical Care Network

In November 2015 Alison Sims was invited to speak at a West Midlands Critical Care Event. The teams there have been working in a networked way and were keen to see what they could learn from the CHN model. Working with them has been inspirational as they have progressed their services in different ways and are keen to share their learning also. This has been a mutually beneficial relationship. At the end of the event day the West Midlands team signed-up to become an official Network. This is fantastic news as they have all the skills and experience to consolidate the fantastic work that they do. We will continue to link-up and share best practice wherever possible and we look forward to working with them more in the future.

Kids Intensive Care and Decision Support Team (KIDS) West Midlands


Alison SimsAssociate Director


Liz WardDirector of Operations

Child Health, UHS

Paul ByrneGeneral Manager

Children’s and Women’s Division, OUH

Hosting Operational Delivery Networks (ODNs)

2015 presented an opportunity for the CHN to host a number of Paediatric ODNs for the Thames Valley and Wessex regions. In essence this will support us to develop some of the Children’s Services so that they are in line with the NHS England National Operational Delivery Network Governance Framework. This, we believe sets a good foundation and will enable our non-ODN services to embrace this compliance style, in preparation for transition to ODN status if available at a later date. Working in an ODN-style will also develop the links with all stakeholders that work with us to provide many children’s services.

Clinical Leads and Network Managers for the Neurosciences and Critical Care ODNs were recruited this year and you can view updates in their sections of this report. Cardiac ODN implementation is also underway.


The map The map below demonstrates the areas covered by the Network.

The regions we cover

Dorset

Cornwall

Devon

Hampshire

Wiltshire

Sussex

KentSurrey

Berkshire

London

EssexHerts

Bucks

Oxfordshire

Shropshire

WarsNorthants

Beds

Cambs

Suffolk

Norfolk

Leicestershire

Notts

DerbsCheshire

Yorkshire

Lancashire

Rut

Somerset

Glos

Herefs

Worcs

Staffs Lincolnshire

Beds = BedfordshireBucks = BuckinghamshireCambs = CambridgeshireDerbs = DerbyshireGlos = GloucestershireHerefs = HerefordshireHerts = Hertfordshire

Northants = NorthamptonshireNotts = NottinghamshireRut = RutlandStaffs = StaffordshireWar = WarwickshireWorcs = Worcestershire


Our ambition and vision for success

We will continue to focus on delivering high quality specialist services through a unique partnership of clinical and operational networks across more than 20 District General Hospitals in the Thames Valley and Wessex regions.

We have established strong foundations during the past three years and we continue to proactively review the services that we host. We are currently assessing our future strategy and look forward to sharing updates via the CHN quarterly newsletter and website.

Our priorities for 2016/17

l Continuation of Implementing Operational Delivery Networks for Cardiac, Critical Care and Neurosciences

l Developing our Rehabilitation regional networkl Developing further services where patients can

benefit from a networked modell Implement a Network-wide Transition

programme – transitioning patients from Paediatrics to Adult Services using the Ready Steady Go model – you can read more here http://www.oschn.nhs.uk/our-services/transitional-care/

l Implement a Network-wide Patient and Public Improvement strategy


Our patients

Declan’s StoryDeclan Wilson, a 12 year old school boy, had been suffering with chronic fatigue when he developed an insidious onset of chronic leg and abdominal pain. This pain had been ongoing for a year and soon became so debilitating that Declan started missing school and using crutches.

Declan was referred to the Chronic Pain Team at Oxford University Hospitals and initially attended the Pain Education session which teaches children, young people and their families about pain and how to manage it. Declan found this extremely insightful and immediately stopped using his crutches.

A few months later after several sessions with the team, it was suggested Declan attend the two-week intensive rehabilitation programme. The programme is tailored to the individual’s needs and all members of the Multi Disciplinary Team (occupational therapy, physiotherapy, psychology, teaching) have several sessions with the patient over the two weeks. Declan started the rehabilitation programme in January 2016 and included personalised goal setting, hydrotherapy sessions, pacing advice and mindfulness sessions.

Declan’s mum, Mrs Wilson, commented “We found the team fantastic because they took the two weeks entirely at Declan’s pace and he could do it how he wanted. Declan is significantly better, he has gained so much confidence and has really blossomed. He is now attending school full time and participates in all P.E. sessions.”

Patient Story


Patient Story

Charlie’s Story Charlie Pearson first started experiencing chronic abdominal pain in 2013 which left him unable to play his favourite sport, basketball.

Charlie first visited the team in July 2015 and after several psychology and occupational therapy sessions, Charlie attended the two week programme in January 2016. Charlie’s individual needs meant that psychology and occupational therapy sessions were most appropriate for him.

Charlie had his 6 week follow-up review at the end of February 2016 and was pleased to see his goal attainment scores had improved. The programme allowed Charlie to explore what exercise works best for him and he is a new member of his local leisure centre where he swims often. He is looking to enrol in the junior gym where he will be able to use the cardiovascular equipment.

Sarah Pearson, Charlie’s mum, said “I can’t rate the service enough, it has been a real help. The team are so dedicated and made the time to get to know Charlie. Often in the NHS, you can feel you are just another patient but this is very personal. The programme gave Charlie management techniques for his pain and anxieties and he has learnt how to manage the pain on his own. We felt very lost and didn’t know where to go for help before Charlie was referred, but this whole experience has been a real life saver.”


Felix’s StoryFelix Barrow was knocked down by a car outside his home in October 2015. He was flown to Southampton General Hospital by the air ambulance and placed in a coma. Among his many injuries, Felix suffered a traumatic brain injury which was potentially life-limiting and very severe.

Felix is now under the care of the Southampton Children’s Integrated Rehabilitation Team (SCIRT) consisting of Physiotherapists, Nurses, Occupational Therapists, Speech and Language Therapists, Dieticians and Play Specialists.

Felix has been receiving extremely intensive rehabilitation from all members of the multidisciplinary team (MDT), often with multiple sessions of therapy per day. Felix has had rehabilitation 7 days a week with timetabled sessions of 45 minutes (physiotherapy twice a day Monday-Thursday, once a day on Friday, Saturday and Sunday). After 19 weeks from admission, the physiotherapists have delivered Felix an estimated 190 hours of rehabilitative physiotherapy including Christmas Day and Boxing Day. Felix has also received in excess of 95 hours of OT rehabilitation, in excess of 50 hours of speech and language therapy and additional sessions for the other rehabilitation disciplines. He also has support from the Child Brain Injury Trust family support worker and input from the Tadworth Brain Injury Specialist.

Felix has also received input from the wider MDT including orthopaedics, ENT, tracheostomy nurse specialist, infection control, neurosurgeons and orthotics.

Felix, a sports fan who had qualified for Team GB’s U13’s biathlon team by age 10, loves the physiotherapy sessions and calls them ‘training’. He is determined to walk unaided.

Felix and his story have featured in local newspapers, on local radio stations and on BBC South Today. Felix’s parents have set up “Fit for Felix” a charity raising money for Felix’s care when he is ready to return home but also for PICU at UHS and the Hampshire and Isle of Wight Air Ambulance.

Patient Story


Felix is learning to walk and talk again but it doesn’t stop him from interacting with everyone around him. When not undergoing therapy, he enjoys playing Fifa on his X-Box with two of his best friends and also plays board games with his family. Felix is very thankful for all the visitors that come to see him. Most notably are two sporting figures; Steven Davis from Southampton FC and Rob Hayles, three-time Olympic cycling medallist.

After 130 days in hospital, Felix was able to walk through his front door for the first time since his accident, with Mum and Dad’s assistance. This would not have been possible without the ongoing rehabilitation that has been provided. Felix is now mobilising indoors and in familiar outdoor environments with close supervision whilst also building up time in hospital school. Felix has been able to stay at home for the weekend and it is hoped that he will be able to return home each weekend whilst his rehabilitation continues during the weekdays.

Nan, Jean Reynolds, said “The staff are very responsive and when he found the high dependency unit too loud, they moved him to a side room which Felix was much happier with”

Felix walks through his front door for the first time since the accident


Connie’s story In December 2015, Connie and her family were visiting Hampshire from their home in Buckinghamshire, when an accident in Lymington caused a major head injury.

Six year old Connie was on holiday in the New Forest between Christmas and New Year with her parents and her 4 year old sister Grace, when an iron bollard collapsed, on which she had climbed, and she fell onto a cobbled street, severely injuring her head. Connie lost consciousness, was bleeding from her nose, and vomited. Within approximately 5-10 minutes of calling, two ambulance crews arrived to tend to Connie and took her, and her family, to University Hospital Southampton (UHS) Emergency Department. At the scene, aside from the bleeding through her nose and a contusion to the back of her head, there were no other clear signs of trauma. Connie was put into a head and full body brace so she was immobilised for the journey to Southampton. During the journey, Connie vomited again and the paramedic team noticed what appeared to be a further contusion at the front of her head, although her face was not otherwise marked.

There are many things that the family can’t remember clearly about their arrival at UHS, however both parents remember being met by the large team that had been assembled for Connie’s arrival. Connie’s Dad, Richard, recalls many moments of small kindnesses from staff such as someone playing and talking with Grace whilst in the Emergency Department whilst both parents were dealing with the immediate trauma. If you go through something like this, he tells us, “there are moments of kindness that mean as much as the big things, you can never underestimate the powers of the words that are spoken in those initial moments.”

A CT scan was performed which showed that Connie had a significant skull fracture at the front of her head. A valve was inserted into her skull and Paediatric Neurosurgeon Mr Mathad decided that the pressure in Connie’s brain was too high and could increase further in the next 48-72 hours. Connie was taken to

Patient Story

Connie, Caroline


theatre where an emergency craniectomy was performed. This is a neurosurgical procedure in which the front part of Connie’s skull was removed to allow her brain room to expand as it swelled from her injury. It was explained to both parents that the brain is rather like a lunchbox, and that to protect her brain from any further damage, that the ‘lunchbox’ needed to be opened to release the pressure. Connie’s family was told that whilst it would be dependent on Connie’s recovery and how the brain reacted post-surgery, that it could potentially be 2-3 months until the skull was replaced. Until then, the pieces of her skull would be kept within her tummy to protect it from infection and protect against possible rejection when replaced. In fact, within five weeks of the accident, Connie’s brain had recovered enough for her skull pieces to be put back. Whilst Connie’s emergency craniectomy happened unusually quickly (within three hours of arriving at hospital), her parents are convinced that this action saved her life.

After the operation, Connie was taken to the Paediatric Intensive Care Unit (PICU) where she stayed for two weeks. She was ventilated and in a coma. For several days her chances of survival were uncertain as her brain was very swollen. Her parents have stayed with her 24 hours a day since the accident, and the PICU team were always on hand. Also keeping Connie company was Trumpet, her PICU elephant which is given to all children who are treated on the ward.

Connie’s parents credit the PICU medical team’s communication and care; “Their communication was incredible, caring and very transparent. They were careful to be factual, we knew that Connie’s prognosis was uncertain, but never did they stop us hoping. As much as they took care of Connie, they also took care of Caroline and I, and for that we will be eternally grateful”. Connie’s Mum and Dad can easily list off the names of at least half a dozen members of staff including doctors and nurses, who they remember for their assurance and care, and for their moments of kindness that went above and beyond the requirement of a medical professional, whilst on PICU and since.

After a week in hospital, a further CT scan showed Connie had developed a brain aneurysm, felt to be a direct result of the accident. An aneurysm is a ballooning of a blood vessel, which if it bursts can be fatal. This scan was repeated 2-3 days later, and showed that the aneurysm was increasing in size and Connie


would require further treatment to prevent a bleed. For Connie’s parents, although given gently, this news was hard to take as it came on the same day that Connie’s neck brace was removed and Mum Caroline could cuddle her in bed for the first time since the accident. A first attempt to control the aneurysm was abandoned after three hours and Connie had to have further surgery.

Connie had left sided weakness because of her right sided brain injury, yet since the middle of January and her move to the neurology ward, Connie has steadily progressed. Nobody would want to spend their birthday in hospital, but on Connie’s 7th birthday she managed to give her Dad a thumbs up and by the end of January she moved her left arm for the first time. This is testament to the regular sessions Connie has with speech and language therapists, occupational therapists, play specialists, physiotherapists and psychologists, as well as the determination of Connie and her parents.

During this time, Connie also underwent her third operation in two months, to replace the skull pieces that had been stored in her tummy for safe-keeping. Around four days after this operation, Connie managed to quietly speak her first words and later the same day took her first shuffling steps into the arms of her Mum and Dad.

Her parents say they never asked about the future as they knew that no-one could give an answer “all that was said was that the range of future possibilities was so great and each injury was different, and so we simply continued to hope”.

In Richard’s words, her recovery so far has “been nothing but miraculous.” Only a matter of weeks ago, Connie hadn’t spoken and couldn’t put her feet on the floor. Throughout her time in hospital, Connie has met and been treated by many people, both medically and emotionally. Medically she is improving every day and the care and compassion shown by all not only to Connie but to Richard, Caroline and Grace, has made what has been a very difficult time for them easier to cope with.

Support has also come from friends, family, work and Connie’s school. “School friends have sent in recorded messages and cards which have been great for Connie to see and recognise the voices and songs of those she knows”, said Richard. In addition to this, Connie has also started attending occasional school sessions at UHS as part of her recovery.


Connie’s family praise every team they have met highly for both their medical knowledge and the way they inspire trust. “They have done the little things that go above and beyond the requirements of a medical professional like the staff from the ambulance service, PICU and the original trauma team who have continued to visit Connie to see how she is doing.”

Thanks to the efforts of the multi-disciplinary team, Connie’s awareness and alertness is improving. Conversations now are about working on her complex cognitive function which is a great stride on from a few weeks ago. Dad Richard tells us “There are many things that Connie doesn’t know or currently cannot explain. Her communication is challenging, equally some of her memory and cognitive functioning. She remembers and knows some things but cannot find the vocabulary or the sentence structure to tell it, and she struggles greatly with a lack of attention, fatigue and the ability to focus for short periods of time.”

Connie’s four year old sister Grace was there when the accident happened and has had to cope with time apart from her sister and parents since the accident. Her parents have been living at the Ronald MacDonald House at UHS. To try and keep things normal for Grace, she has continued to attend her village pre-school, travelling to Southampton each weekend to be with her family. Only recently has she been reunited with Connie as Grace had expressed fears and memories around the accident. The play and psychology team have worked closely with Grace to help her through this.

Discussions have now started regarding Connie’s short to medium term rehabilitation program and where that will be undertaken. The family were back together again for Dad Richard’s 40th birthday in early March. Richard says “The future remains unclear for Connie, and so it’s difficult to look forward too much given our life has changed so much, but if today is better than yesterday, and yesterday better than the day before, then we know that today has been a good day.”

Connie, Richard, Grace, Caroline (L-R)


Since 2010 the teams at Oxford and Southampton have been working as a regional Network. James Gnanapragasam has been Clinical Lead during this time and has been integral in navigating the teams through the complex and lengthy national reviews, which have been taking place for a number of years. We would like to thank James for all his hard work as he will be stepping down from this role although will continue as part of the team based at Southampton. We are currently recruiting a Clinical Lead to develop the Cardiac service as an Operational Delivery Network (ODN). Interviews will take place in May.

The New Congenital Heart Disease Review started in June 2013 following the National Safe and Sustainable review. This assessed all Paediatric and Adult Cardiac services in the UK and its aims were:

• securing the best outcomes for all patients, not just lowest mortality but reduced disability and an improved opportunity for survivors to lead better lives;

• tackling variations so that services across the country consistently meet demanding performance standards and are able to offer resilient 24/7 care;

• improving patient experience, including how information is provided to patients and their families, and consideration of access and support for families when they have to be away from home

The teams at Southampton and Oxford have continued to provide an excellent service for our patients that come from as far north as Northamptonshire and as far south as Cornwall and the Channel Islands. The end of the review is imminent and we expect to gain feedback from the National Team regarding the changes we may need to make to our service. You can read more here www.england.nhs.uk/ourwork/qual-clin-lead/chd/

Our Clinical Networks

Children’s Cardiac Network (ODN)

James GnanapragasamNetwork Clinical Director for Cardiac University Hospital SouthamptonNHS Foundation Trust


Our priorities for 2016/17

Cardiac imaging project – we are currently launching an IT project that will improve the sharing and quality of images across the Network. Mike Ives, IT manager, UHS will be leading this project which will upgrade the current software. Images are shared during regular Multidisciplinary Teleconference meetings between Oxford and Southampton teams. The upgrade will enable the team to view a patient’s condition in more detail supporting joint decisions about diagnosis and the treatment pathway.

National Data Collection – The National Institute for Cardiovascular Outcomes Research (NICOR) have recently published 2012-2015 UK audit results. Southampton as our surgical hub has continued to maintain an excellent standard of care, as can be seen on the following diagrams taken from

the report which is available for view on the link below:https://www.ucl.ac.uk/nicor/audits/congenital/documents/annual-reports/NCHDA2012_151.1

l Appoint ODN Clinical Lead l Appoint regional Network Manager (depending

on National Decision regarding Super Network outcome)

l Implement TV/Wessex Clinical Forum (building on the existing communication structure)

l Review Protocols and pathways – ensuring full stakeholder inclusion

l Develop improvement plans, service specifications and policies

l Analyse and streamline data processes across TV/W


Building on the previous excellent work that has been achieved by clinicians and other health professionals working together across the region, the Children’s Hospitals Network were pleased to succeed in their bid to host the Paediatric Neurosciences Operational Delivery Network (ODN) for Thames Valley and Wessex in 2015. Paediatric Neurosciences ODNs are NHS England mandated networks designed to ensure that children with neurological health care needs receive consistently excellent care that revolves around them and their families.

Children’s Neurosciences Network (ODN)

Heather DeeleyManager

Neurosciences (ODN), Thames Valley & Wessex

Aabir ChakrabortyClinical Lead

Neurosciences (ODN), Thames Valley & Wessex


l Staffing – In October 2015, Heather Deeley started in role as Network Manager for the ODN. In January 2016, Aabir Chakraborty, Paediatric Neurosurgeon at Southampton Children’s Hospital was appointed to the role of Clinical Lead to complete the team.

l Clinical consultation – One of the first priorities of the ODN once established was to conduct a clinical consultation in order to understand where there were areas of excellent practice and where there were clinical pathways that could be improved. This was undertaken in January 2016 and used to inform the 2016/17 work programme.

l Joint MDT – A joint MDT has been piloted between the Neuro-oncology teams at Oxford and Southampton with plans to embed this into routine practice in 2016/17. This will provide the teams with expertise across the network, improving outcomes for children with conditions in this specialty.

l Clinical Forums – The Wessex Paediatric Neurosciences Clinical Network (WPNCN) and the Oxford Regional Epilepsy Network Group (ORENG) have continued as well established forums with representation from hospitals and community providers across the regions, focussing on the improvement of care for children with neurological conditions through education and case discussion.

l Neuromuscular – Oxford Children’s Hospital was successful in its bid to become a Centre of

Neuromuscular Clinical Excellence as granted by Muscular Dystrophy UK. Southampton Children’s Hospital expects to receive this accolade in the next audit.

l Neuro-rehabilitation – Teams at both Oxford and Southampton have been busy developing their acute neuro-rehabilitation services in line with the business cases agreed by NHS England and supported by UK-ROC. The improved services will see patients receiving enhanced rehabilitation both in hospital and out of hospital in years to come.


Our priorities for the coming year:

• ODN development – joint pathways and clinical forums – This year we plan to merge the Thames Valley and Wessex clinical forums in order to share best practice across the regions. The first joint multi-professional clinical day will take place in May 2016. Cross-regional working groups will be established to address network priorities as highlighted by the January 2016 clinical consultation. The neurosciences service specifications will be reviewed from a network perspective to ensure that patients in our region are receiving the best care possible and that pathways of care are improved where necessary.

• Epilepsy – The outcome of the recent national Children’s Epilepsy Surgery Service (CESS) consultation is expected imminently and the network will work with commissioners and designated CESS centres to ensure that all children with epilepsy in the region receive excellent and equitable care pathways, regardless of where they live.

• Patient stories – We will continue to listen to our patients and their families in order to understand where excellent care is provided and how we could improve the care in our region. This information will be used to inform changes in care pathways and to educate clinical teams.

• MRI project – A project manager will review regional access to MRI for children, not only in neurosciences but across all children’s services. The project will audit and review access to standard MRI and MRI under general anaesthetic and as a result, propose and implement appropriate service improvement initiatives.


Children’s Critical Care Network (ODN)

As mentioned in our 2014/15 annual report, we have spent the year joining up Thames Valley and Wessex Clinical Forums with new staff at OUH well established in their roles. Both Thames Valley and Wessex run a clinical forum which comprises teams from hospitals around the region, with a focus on improving care for children who are critically injured or unwell. We will take this joint working further in 2016/17 by launching the first Thames Valley & Wessex Joint Clinical Forum, in June 2016.

Our collective mission statement is;• To ensure that the clinical management of critically ill children in

both the District General Hospitals and Paediatric Intensive care in the Thames Valley and Wessex senate region is of a high standard. That any shortfalls in service are recognised and managed. That quality improvements are shared and introduced throughout the region.

UHS PICU nurses have undertaken an extensive extracorporeal membrane oxygenation (ECMO) training programme to gain competency in managing children requiring ECMO.

A new policy in managing the transfer for time critical patients, and a tool in managing sepsis have been developed and shared across the Network.

Carolyn CairnsManager

Critical Care (ODN)Thames Valley & Wessex

Mike LinneyClinical Lead

Critical Care (ODN) Thames Valley & Wessex


Our priorities for the coming year

Our priorities for the coming year will focus on reviewing our performance as hospitals in Thames Valley and Wessex against the updated national Paediatric Intensive Care Standards, which were published in February 2016. From this we will select a work programme which will seek to address any network issues we find.

The ODN is also working hard to build relationships and dialogue with other Paediatric Critical Care ODNs around the country so that we can learn from work already done, and work together on things we may all need to resolve.

The ODN will be working to establish its governance structure to support member Trusts and District General Hospitals to get the most out of working together. A website will be established to share and promote the work of the network.

The ODN will support members to peer review other hospitals – and be peer reviewed by other members – to draw out good practice, success stories, and learning for the wider network.

We will ensure that the voices of children who experience our services are heard. We will collect patient stories throughout the year to help us understand what we have done well, and what we could work on to do better.


Children’s Rehabilitation Network

Southampton:

• The rehabilitation team has expanded to include Psychology, additional Physiotherapy, Occupational Therapy, Speech and Language therapy, Dietetics and Play Therapy.

• From 1 September 2015 commencement of a service across 7 days for rehabilitation by Physiotherapy and also Occupational Therapy. The additional weekend service looks at treating the acute patients on site and for those who are able to leave hospital and focus on reintegration into home or the local area to facilitate earlier discharge. This is the first 7 days therapy service for paediatric rehabilitation in the UK.

• There are clear pathways for paediatric rehabilitation from admission through Paediatric Intensive Care Unit (PICU) through the High Dependency Unit (HDU) and the children’s wards to discharge home or, if funded, to Bursledon house or Tadworth

• The Children’s Trust, Tadworth have generously funded a Brain Injury Co-ordinator, Aimee Mehrabian. Aimee is a brain injury specialist working alongside clinical staff in order to provide information, education and support to families and schools after a child's discharge from hospital.

Oxford:

• Creation of a new Department of Children’s Rehabilitation, comprising the existing Pain Rehabilitation Service (OXCYPP; Oxford Centre for Children and Young People in Pain) and the new Neurological Rehabilitation Service.

• The number of senior staff has been increased by 3.0 WTE (Psychology, PT and OT). A Speech and Language Therapist will be recruited later in the year. This team will be supporting both the children and young people requiring inpatient and outpatient

neurological-rehabilitation and the chronic pain team.

• Consideration of and planning for a weekend service for children with acquired brain injuries. This service will be for physiotherapy only for now.

Network ResearchIn addition to reporting on outcomes for children with acquired brain injury admitted to Southampton, Fenella Kirkham is developing methods of measuring Patient Reported Outcome Measures (PROMs), including an app to monitor pain in sickle cell disease as part of her NIHR funded Phase 2 trial. Konrad Jacobs has met with Professor Sally Lamb from the University of Oxford who has an interest in paediatric rehabilitation.

We have plans to collaborate in contributing to research over the coming year as there is a lack of research into basic aspects of the conditions that we see in our young patients, as well as a lack of intervention studies.

Service development

The neurological rehabilitation services at both Oxford and Southampton are rapidly growing and have developed significantly in the past year:


l Joint Network Meetings – The Clinical Leads and Network Manager meet monthly to discuss service developments. There are plans for a Network Meeting with all clinical staff from UHS and OUH in the summer of 2016 to revise protocols and compare datasets and discuss how best the teams can continue to support each other

l Rehabilitation Steering Group – the Oxford Steering Group meets quarterly to prioritise developments and guide the operations of the Network. We are extremely pleased to have a patient group representative from the Child’s Brain Injury Trust who influences strategic direction.

l Aligned outcome measures – The UHS team have accreditation by UKROC meaning they meet the national minimum dataset for Specialist Rehabilitation services. They are the first acute paediatric rehabilitation service within UK to achieve this.

Oxford does not currently contribute to the dataset, however the Network have commenced the process of aligning outcome measures. The Clinical Leads have agreed to use the EQ5D-Y self-reported outcome measure to allow for comparison across the region.

Professor Fenella Kirkham

Dr Konrad Jacobs

Oxford’s paediatric virtual gym was awarded the winner of the category for Emerging Best Practice from the British Society of Rheumatology in February 2016 which was great news to the team. This excellent achievement was awarded by the panel due to the novel approach taken by the initiative and the impact it is having on transforming the lives of children and young people.


Priorities for 2016/17:

• Develop Patient Reported Outcome Measures (PROMs) that are comparable across Oxford and Southampton. The Clinical Leads are hoping to find funding for appropriate software that has sufficient capabilities to collect and analyse complex statistics across both regions. Meanwhile, Sophie Goddard, Rehabilitation Network Manager is working with Bev Watson, Service Improvement Lead at UHS and Vinnie Vijayakumaran, Registrar at UHS to discuss the development of comparable measures across the Network.

• Research: The Network members are currently discussing research opportunities and have expressed initial interest into research surrounding the biomechanics, sleep and the patient experience of victimisation and bullying for our patients undergoing rehabilitation. We

will organise a meeting between Oxford and Southampton specifically for the purpose of developing joint research projects. We hope to work closely with local, national and international researchers and publish Network papers.

• Third Sector collaboration: We hope to continue working closely with third sector organisations such as the Children’s Trust at Tadworth, Child Brain Injury Trust and Young Epilepsy to share learning and best practice.

• Network study days: Implement joint clinical study days to occur yearly. These would be an opportunity for the CHN teams to share best practice and education. We would also like to organise joint study days for GPs, secondary and tertiary care Doctors and allied health professionals

Sophie GoddardNetwork Project Manager,

Rehabilitation


The Orthopaedic Network has existed informally for over 10 years. Tim Theologis, Consultant Paediatric Orthopaedic Surgeon in Oxford and Mike Uglow, Consultant Paediatric Orthopaedic Surgeon in Southampton wish to develop and grow the Network over the coming years.

So far the Network has evolved from an informal partnership that has been functioning for a number of years. This involved Oxford, Southampton and a number of DGH’s in the Thames Valley region including, Northampton, Milton Keynes, Stoke Mandeville, Wexham Park, Reading, Swindon and Cheltenham. Surgeons meet 2-3 times per year to discuss challenging clinical cases, listen to lectures and exchange ideas. This network in now formalised under the umbrella of the CHN. The last two network meetings, one at Southampton and one in Oxford, were very well attended, stimulating and helpful.

Children’s Orthopaedics Network

Mike UglowNetwork Lead

Consultant Paediatric Orthopaedic Surgeon, University Hospital Southampton

Tim TheologisNetwork Lead

Consultant Paediatric Orthopaedic Surgeon, Oxford University Hospitals


For 2016/2017, the Network has four main priorities:

1. Develop a fast and safe web-based communication platform to facilitate discussion of cases and review of radiographic imaging.

2. To facilitate clinician contracts across the region in order to allow Consultants to move fluidly between DGHs and the tertiary centres. This will allow colleagues to collaborate in highly specialised cases. This will also help maintain routine work outside the tertiary centres.

3. To facilitate patient movement across the region, including care pathways shared between more than one hospital (e.g. treatment in a tertiary centre and recovery in a DGH).

4. To keep orthopaedic cases within the Network so that patients do not have to travel long distances for surgery.

2016/2017 projects:

The Ponseti technique in the management of clubfeet in the neonatal period: This is a well-established and evidence-based technique internationally. Adhering to the principles of the technique is key to its success. We discussed auditing the results across the region with the aim to ensure that uniform protocols are followed and results are consistent.

Hip surveillance in children with cerebral palsy: There is a national initiative to improve the standards of surveillance in this area in order to prevent silent dislocation and the onset of painful secondary arthritis in the population of non-ambulant children with cerebral palsy. Setting consistent criteria and surveillance protocols acrossthe region would be a challenging but worthy project.

Two projects have been identified as potential future targets for the development of common pathways across the network:


Children’s Rheumatology Network

There have only been very recent talks regarding the Rheumatology Network but Kathy Bailey, Consultant Paediatric Rheumatologist in Oxford and Alice Leahy, Consultant Paediatric Rheumatologist in Southampton hope to work more closely in the future.

There are 2 research studies currently on-going – Healthcare Quality Improvement Partnership and Capture JIA. Both studies are reviewing outcome measures and capturing the core data for every episode. The CHN teams look forward to the recommendations of these studies, which are due to be released by the end of the year.

We hope that this will be another successful partnership of collaborative working to improve the quality of care for patients in the Network.

Kathy BaileyConsultant Paediatric Rheumatologist,

Oxford University Hospitals

Alice LeahyConsultant Paediatric Rheumatologist,

University Hospital Southampton


Southampton Oxford Neonatal Transport Service (SONeT) was launched on 1st July 2015 following a successful tender award in April 2015.

SONeT is a joint venture between the neonatal services in Oxford and Southampton Trusts, providing a comprehensive 24/7 retrieval and repatriation service for the 15 neonatal units across the Thames Valley & Wessex areas with a single point of contact through the SONeT control centre.

The service has a dedicated website (http://www.sort.nhs.uk/SONeT/SONeT-home.aspx), which includes a dashboard of cot and maternity bed availability for each hospital, as well as information for parents & families, referral units and the SONeT staff. The control centre provides cot location for babies requiring urgent transfer and facilitates conference calling where required.

SONeT held a stakeholder event in November 2015, and received excellent feedback from both referring units and families who have used the service. SONeT

also ran two well received Pre-Transport Stabilisation study days in 2015 to

support staff managing sick new-born infants in our

referring hospitals.

The teams transferred 872 patients between July 2015 and March 2016, with 314 patients requiring urgent transfers for intensive care treatment.

For more information about the service please visit the website at http://www.sort.nhs.uk/SONeT/SONeT-home.aspx

Other network news


Update on changes at Southampton Children’s Hospitalis vital we improve and expand our children’s hospital facilities to meet increasing levels of demand.

“This funding, in addition to the £800,000 already invested by the trust, enables us to move forward with our plans – but we wouldn’t find ourselves in this position if we had not been fortunate enough to have the support of some very passionate and dedicated campaigners.

“We would like to say a special thank you to the Murray Parish Trust, Winchester MP Steve Brine andhis parliamentary colleagues and our local media fortheir fantastic efforts to drive this campaign forward but, most importantly, to our patients – past and present – and their families, staff and members of the public.

“We have seen an amazing display of teamwork from so many people to get us to this point and we now look forward to working with our partners to begin planning a fundraising campaign to meet the remainder of the costs.”

For more information, visit our children’s ED development page http://www.uhs.nhs.uk/Ourhospitals/SCH/Supportourcaseforadedicatedchildrensemergencyandtraumadepartment.aspx

Chancellor agrees £2 million investment in children's emergency department

Chancellor George Osborne has today (Wednesday 16th March 2016) announced the government will invest £2 million in a new £4.8 million children’s emergency and trauma department at Southampton Children’s Hospital.

Commenting on the announcement, Fiona Dalton, chief executive of University Hospital Southampton NHS Foundation Trust, said: “We are absolutely delighted the chancellor has agreed to invest £2 million towards a new children’s emergency and trauma department for children from across the South of England.

“We are extremely proud of the excellent clinical care our staff already deliver every day but, in order to maintain our high standards over the coming years, it

With kind permission of University Hospital Southampton NHS Foundation Trust


Transforming your hospital

There are a number of exciting improvements happening at Southampton Hospital

Creating a new front entrance The original entrance to the hospital was built in the 1980s when we served far fewer patients. Today almost 10,000 people walk through our doors (on average) every week day so we wanted to create a modern space that better serves everyone’s needs.

The new design includes larger, lighter, double-height entrance housing:• a welcoming atrium with new main reception• a spacious and comfortable waiting area• information and travel update screens• accessible WC facilities, including baby change• adult disabled change area.

PLUS a wide choice of cafes and food venues, shops, outpatient pharmacy

Improving accessibility and parking

We are currently reviewing our parking facilities

Our aim

• To make the site more user friendly for patients, visitors and staff and to ensure we can cope with increasing demand for our services.

• To increase the number of parking spaces on site, while making it easier for drivers to find available spaces.

• To reduce the hospital related parking in local streets.

With kind permission of University Hospital Southampton NHS Foundation Trust


Plans are underway for a new development to provide on-site accommodation for the parents of sick children and babies who are patients in our John Radcliffe Hospital.

The Trust is working with the independent charity Ronald McDonald House Charities, which already provides 17 bedrooms in the Oxford Children's Hospital for parents and families. Plans are at a very early stage (pre-planning application) to develop a new Ronald McDonald House within the grounds of the John Radcliffe Hospital.

The plans were unveiled on 16 January 2016, and marked the ninth anniversary since the charity opened its first accommodation in the Oxford Children's Hospital in 2007. The outline designs are for a new stand-alone House with around 60 bedrooms to be built in the hospital grounds adjacent to Woodlands Road.

The designs can be viewed on the Ronald McDonald House Charity's website: proposed relocation of Ronald McDonald House Oxford.

The House will give families a place to rest, relax, cook, clean and be together away from the stress of the hospital. Communal facilities such as kitchens, playrooms and lounges that are found in other Ronald McDonald Houses across the UK have been included

in these plans to provide a real 'home away from home' for the families that stay.

Like all specialist children's hospitals, Oxford Children's Hospital provides services across a wide region. Children and their families travel from all over the UK, including Northern Ireland, to receive treatment and care. Whilst accommodation for parents is possible overnight next to their child's bed or cot, the current facilities are not suitable for use for longer than a few days, or for more than one parent. The proposed new family accommodation will also support families who have babies in the hospital's Newborn Intensive Care Unit.

Funding of around £9 million needs to be raised over the next couple of years before the expansion and relocation of the Oxford Ronald McDonald House can be progressed.

To find our more visit: www.rmhc.org.uk.

Ronald McDonald House at OUH

Design for new Ronald McDonald House


Ronald McDonald House Charities opened their Southampton facility in December 2014. The 53 bedroom House provides free ‘home away from home’ accommodation and support for families who have children being treated at Southampton Children’s Hospital and the Princess Anne Hospital. In 2015, the House accommodated over 1,200 families, helping them stay close to their children in hospital. The average time a family stays at the House is 12 nights, but the longest stay was 326 nights. The House is more than just a place to stay, offering comfort, support and safe environment where families can share their experiences with other families in similar situations. The House has communal living facilities including kitchens, lounges, playrooms and a laundry room. This enables families to stay close to their child and maintain a degree of normal family life. Every bedroom in the Ronald McDonald House also has a telephone linked directly to the children’s ward. In the House’s first full year of being open, the team have succeeded in bringing some much-needed respite to families. With the help of some incredible volunteers, they’ve organised quiz nights, ‘Waffle Wednesday’, therapy dogs, Easter festivities, a book reading by Matt le Tissier and Francis Benali, Santa’s Grotto and so much more. And the Charity’s

supporters have raised money to donate breast pumps for the use of mums staying in the House, as well as taken on some intrepid adventures, such as the Talisker Whiskey Atlantic Challenge, skydives and runs. Ronald McDonald House Charities is an independent charity, and relies on the generosity of supporters and fundraisers, including McDonald’s customers, without whom it would be unable to continue its work. There are 14 Ronald McDonald Houses across the UK, and helped over 7,000 families in 2015. The Charity was founded in 1989 and has been keeping families together for more than 25 years.

Ronald McDonald House at Southampton


Conclusion

It has been another fantastic year where we have developed the services in our portfolio whilst proactively seeking opportunities where other patient cohorts can benefit from this Network model. Nationally we are working with other services and regions who are keen to replicate a similar model and we are pleased to collaborate and share best practice wherever possible.

The teams that we work with are passionate about their services and continuously surprise us with the innovative ideas that they offer. Combining this expertise with patient and parent representation will ensure that we are involving the public as much as we can in the continued design of services allowing us to deliver the best possible outcomes for patients and staff alike.

We will continue to lead the way nationally, continuously developing and we look forward to updating progress in our Newsletters, the website and our next Annual Report.

Providing a sustainable Clinical Network Delivering healthcare to patients requiring Specialist Services

www.oschn.nhs.uk


University Hospital SouthamptonNHS Foundation Trust

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