The North West Children’s Major Trauma Network
Completing the Jigsaw: Putting the Pieces Back Together Again. Rehabilitation
for Children after Major Trauma
Friday 24th April 2015 at the Centre, Birchwood, Warrington, WA3 6YN
Report
nwchildrenstrauma.nhs.uk
Completing the Jigsaw : Putting the Pieces Back Together Again V.1 Author: Mike Wafer
Page 1
Contents
1.
Introduction
2.
Objectives of the Day
3.
The Outline of the Day
4.
The Target Audience
5.
Summary of sessions
i.
Overview of Rehabilitation in Children after Major Trauma Nicola Adamson,
Associate Director of Strategy Royal Manchester Children’s Hospital
ii.
Rehabilitation in the Context of the Major Trauma Pathway Helen Blakesley
Rehabilitation Coordinator Royal Manchester Children’s Hospital/Sharon Charlton
Rehabilitation Coordinator Alder Hey Children’s Hospital
iii.
Psychological Impact of Major Trauma on Children :Stewart Rust, Consultant
Clinical Psychologist Royal Manchester Children's Hospital and Dr Victoria Gray
Alder Hey Children’s Hospital
iv.
Return to Education :Tracy Gallier Assistant Head Teacher. Royal Manchester
Children’s Hospital
v.
NHS England Overview and Paediatric Neurorehabiltation: Anthony Prudhoe NHS
England
vi.
Neurorehabilitation after Major Trauma: Dr Ram Kumar Consultant Paediatric
Neurologist Dept. of Neurology, Alder Hey Children’s NHS Foundation Trust
vii.
A therapist’s view of complex step down from hospital to community care: A case
study Gareth Troughton MCSP Specialist Paediatric Physiotherapist St Anne’s
viii.
Barriers to delivering rehabilitation in the community Dr Lisa Kauffmann
Consultant Community Paediatrician Manchester
ix.
Rehabilitation of the child following femoral shaft fracture and fracture
management with external fixation Rose Davies Orthopaedic Nurse Specialist
Sharon Atherton Senior Physiotherapist Orthopaedics Alder Hey Children’s
Hospital
x.
Traumatic Amputation Dr Fergus Jepson, Consultant Rehabilitation Medicine ,
Lancashire Teaching Hospitals Trust
Workshops
i.
ii.
iii.
iv.
How can the Transition of Children’s from Paediatric to Adult Services for
Rehabilitation after Major Trauma be improved? Groups led by Krystina Walton
and Stewart Rust
How can Step-down from the Tertiary Centres to local care be improved? Lisa
Kauffman & Rob Boon
What should future rehabilitation services for Children after Major Trauma look
like and how should they be resourced ? Nicola Adamson Rachel Greer
4.How can a Children’s Major Trauma Rehabilitation Network be developed in the
North West? Helen Blakesley and Sharon Charlton
Closing Comments : Miss N.Davis, Joint Clinical Lead NW Children’s Major Trauma
Network
8. Appendices
Appendix 1 : A Young Persons Experience of Major Trauma Care
Appendix 2 : Programme : Completing the Jigsaw: Putting the Pieces Back Together Again.
Rehabilitation for Children after Major Trauma
Appendix 3: Delegates Registered Completing the Jigsaw: Putting the Pieces Back
Together Again.
7.
Completing the Jigsaw : Putting the Pieces Back Together Again V.1 Author: Mike Wafer
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1.Introduction
In the North West of England, North Wales, and Isle of Man in 2013/2014 there were 350 children
who experienced major trauma. Currently the majority of rehabilitation for Children after the Major
Trauma event if required is provided in the two children’s major trauma centres at Alder Hey and
Royal Manchester Children’s Hospitals. This can mean when hospitalised that children are a long way
from their homes and this results in additional stress on the child and their family. After discharge
children and their families can be required to undertake long journeys to the Children’s Hospitals
disrupting school and family life.
2.Objectives of the Day
The objectives of the event were
1. Initiate a Children’s Rehabilitation Network in the North West of England, North Wales and
the Isle of Man
2. Map services across the North West, North Wales and the Isle of Man
3. Share knowledge of the Major Trauma pathway for Children
4. Identify expertise outside the Children’s Major Trauma Centres in rehabilitation for Major
Trauma who can support service development in the North West
5. Develop a model for Children’s Rehabilitation after major Trauma in the North West
6. Seek support from Commissioners in developing the service
3. The Outline of the Day
The day was divided into 4 main themes
1.
2.
3.
4.
Overview of Rehabilitation in Children after Major Trauma
Rehabilitation in children after Traumatic Brain Injury
Rehabilitation in children after Orthopaedic Major Trauma
Group Work on
 Transition of Children’s from Paediatric to Adult Services for Rehabilitation after Major
Trauma
 Step-down from the Tertiary Centres to Children’s Local Services after Major Trauma
 Future rehabilitation services for Children after Major Trauma how they be resourced
 How can a Children’s Major Trauma Rehabilitation Network be developed in the North
West
4. Target Audience
The audience targeted for the day are professionals in the NWChMTN area including Therapists,
Clinicians in primary care and hospital services, Secondary Care and Community Paediatric Nurses,
Commissioners Managers Education professionals and Clinical Psychologists.
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5.Summary of sessions
Overview of Rehabilitation in Children after Major Trauma
Introduction: Nicola Adamson, Associate Director of Strategy Royal Manchester Children’s Hospital
Presentation included a teenage girl’s perspective of the care she received after major trauma before
the Major Trauma Network was established in 2012 . Issues highlighted included the traumatic impact
of the initial event, issues about being cared for so far from home, transferring out of intensive care to
critical care to high dependency and feeling vunerable on a general ward. Once discharged the
difficulties of returning to education were described , issues about availability of physiotherapy,
feelings of isolation and depression and eventual description of feelings of recovery 5 years after the
initial major trauma.
Rehabilitation in the Context of the Major Trauma Pathway Helen Blakesley Rehabilitation
Coordinator Royal Manchester Children’s Hospital/Sharon Charlton Rehabilitation Coordinator Alder
Hey Children’s Hospital
An overview was given of rehabilitation in the context of the Major Trauma Pathway. Information was
given on how children present, prehospital care, NWAS prealerts , Bypassing local trauma units of
patients to take to the MTC and 45 minute isochrones . Explanations were given of how Major
Trauma is defined by Injury Severity Scores.
Psychological Impact of Major Trauma on Children :Stewart Rust, Consultant Clinical Psychologist
Royal Manchester Children's Hospital and Dr Victoria Gray Alder Hey Children’s Hospital
All types of traumatic physical injury can have significant psychological impacts on children and
families. Medical treatment for physical injury can also have significant psychological impact.
Psychological needs are wider than PTSD / PTSS Psychological Needs can emerge over time and
can be long term. Parents are really important and their reactions can determine how children
respond. Children (and Parents) need to regain a sense of safety and it’s everyone's job to help them
do that.
Return to Education :Tracy Gallier Assistant Head Teacher. Royal Manchester Children’s Hospital
Overview was given of the Royal Manchester Children’s Hospital School and case examples given of
children who had experienced Major Trauma .In any given year there are some 100,000 children and
young people who require education outside school because of illness or injury. In addition, there are
a significant number of children who experience clinically defined health problems .The situations of
these young people will vary widely but they will all run the risk of reduction in self-confidence and
educational achievement.
NHS England Overview and Paediatric Neurorehabiltation: Anthony Prudhoe NHS England
Subjects discussed included -Five Year Forward View ;what are the drivers of change? :New care
models; Specialised commissioning and co-commissioning ; new care models ;specialised
commissioning and co-commissioning .Specialised paediatric neurorehabilitation
Neurorehabilitation after Major Trauma: Dr Ram Kumar Consultant Paediatric Neurologist Dept. of
Neurology, Alder Hey Children’s NHS Foundation Trust
Rehabilitation begins from the initial emergency response (early supportive care) Through inpatient
stay (acute and post-acute rehabilitation) To return into the community (cognitive and educational
rehabilitation, complex community rehabilitation, vocational rehabilitation, slow stream rehab,
psychiatric rehab)Neurorehabilitation after Major Trauma consists of 2 main groups: the walking
Completing the Jigsaw : Putting the Pieces Back Together Again V.1 Author: Mike Wafer
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wounded; and the complex inpatients .Not all the rehab can be provided by one person or team at all
stages in recovery and long-term.
A therapist’s view of complex step down from hospital to community care: A case study Gareth
Troughton MCSP Specialist Paediatric Physiotherapist St Anne’s
A case study was presented of a 10 year old girl, running outside house and hit by a car that had loss
of consciousness and was air lifted to Alder Hey. Issues which the case highlighted included greater
inclusion of community teams in discharge planning. Avoidance of common holiday periods for
discharge! Better access to specialist treatment options & equipment Better use of information
technology and communication for community services Post-op protocols & clinic letters . Staff
numbers in the community .
Barriers to delivering rehabilitation in the community Dr Lisa Kauffmann Consultant Community
Paediatrician Manchester
Knowledge and skills are out there too in Community In addition there are special skills in witness and
develop understanding of the life experience of the children and their families Understanding of child
development and rehabilitation of many conditions Access to, understanding of, and empathy for local
social and educational services .It’s all about communication, mutual respect, Effective information
sharing Meetings when everyone important can attend Written information in advance, listening. The
knowledge, skills and desire are there in the community the current community delivery model
doesn’t work for acute rehabilitation, but could do There is not currently enough resource We need to
listen to and respect each other if we are going to provide joined up care for families
Rehabilitation of the child following femoral shaft fracture and fracture management with external
fixation Rose Davies Orthopaedic Nurse Specialist Sharon Atherton Senior Physiotherapist
Orthopaedics Alder Hey Children’s Hospital
The session illustrated the Orthopaedic rehabilitation pathway using the examples of children with
femoral shaft fracture and children requiring limb reconstruction with external fixation. This included
treatments including hip spica, fixed traction and flexible nailing ( dependent on age) Fractured femur
is a difficult diagnosis for a family – no quick simple fix. Parents happy with traction as long as child is
comfortable Hip spica option does not offer a great deal more normality, it involves GA and risk of
position loss. Surgical option only benefits a child old enough to use crutches Support of Hospital at
Home is well received but community nursing input not always available . There are a reduced
numbers of nurses and doctors skilled in traction The role of the physiotherapist includes liaison with
MDT. Pre op explanation. If possible Ensure adequate pain control prior to any treatment intervention
Observe pressure ,colour, and active movement Explanation pre-treatment Ensure good resting
position Oedema management.
Traumatic Amputation Dr Fergus Jepson, Consultant Rehabilitation Medicine , Lancashire Teaching
Hospitals Trust
Overview given of service available for amputees in Lancashire Teaching Hospital Trusts. Different
prosthesis described . Numbers of children under his care low and are treated as a priority group. The
management of expectations of type of prosthesis was discussed. Dr Jepson was willing to take
referrals for children if advice needed.
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6.Workshops
1. How can the Transition of Children’s from Paediatric to Adult Services for Rehabilitation after Major
Trauma be improved? Groups led by Krystina Walton and Stewart Rust
What are arrangements in place now ?
 Currently variable.
 Examples of good practice in CF and Burns
Where are the gaps ?
 Communication
 A 16 - 18 year old hole i.e. Children’s services end at 16 , Adults start at 18.
 In some stand-alone Trusts difficult to link
 Pathways unclear to who or what ?
 Geographical variation
 Processing health different to social services
What needs to be in place ?
 A rehab tariff that acknowledges transition
 National standards that are currently and honestly applied
 Key workers case manager for transition
 Cross over transition clinics – staffed by Adult Child Team
 Hand held records
 Planning for transition from a younger age
 Dissolve Organisational Boundaries
 Promote Collaboration not competition
 Tripartite funding – clearer, quicker and more transparent
What actions need to be taken and by who?
 Alder Hey : Transition Champion Karl Emerson Neurorehab
 NHS England has to pay for it
 Complex need Maria Burney
 Reignite Trusts interests in Transition
 We can agitate/advocate for transition- be passionate about our jobs
2How can Step-down from the Tertiary Centres to local care be improved? Lisa Kauffman & Rob
Boon
What currently happens ?
 Local teams are invited into MDT re discharge
 Early involvement with discharge
Can the process be improved ?
 Yes
How could it be improved ?
 Access to hospital notes by local teams
 Joint teaching sessions
 Local Leads
 Standards of care for rehab
 A rehab package for every child
 Advising what the local team needs to do especially for less severe major trauma
 Clear discharge plans
 Clear pathways to community and for them to be clear who they are to interact
 Wheelchairs
 Early communication with local units
 Knowing who the local leads are
What actions need to be taken and by who ?
 Improving the rehab prescription – make sure its comprehensive
 Need a patient passport
 Early communication local unit
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3What should future rehabilitation services for Children after Major Trauma look like and how should
they be resourced ? Nicola Adamson Rachel Greer
What do the rehabilitation services for children after major trauma are in place now?
Services depend where you live
Where the gaps are Rehabilitation Services for Children, are services in the right place?








Access to equipment hydrotherapy variable
Communication with hospital teams
Lack of coordination IT
Gaps and Differences in Community Services
Some teams look after children with specific conditions some don’t
Services that meet the specific needs of cultural groups
Services are not equitable depends where you are
Lack of continuity in some services
What needs to be in place and how should it be resourced ?






Rehab Tariff that follows the patient
Specialist Outreach Team
A network to drive change
Equipment and Wheelchairs
Specialist Outreach team
Full MDT to include health and Education
What actions need to be taken and by who?







A network that builds relations
Centralised patient held records
Use of IT to support Community Teams, Allow people to attend a virtual MDT
Focus on preparing families for going home back to community
Advocate with commissioners for a tariff for paediatric rehab
Needs to be an equivalent Tadworth of the North
Need locality based hubs for patients – Liverpool and Manchester great but Lancashire less
well served
4How can a Children’s Major Trauma Rehabilitation Network be developed in the North West? Helen
Blakesley and Sharon Charlton
What would be the Network Objectives be?
 Map the gaps
 Build evidence to support practice
 Communication on line – directory better local links
 Positive referral pathways – all areas signed up to
Who should be members of the Network?
 Geographical representation
 GP/Patient and parent involvement
 Therapy, Nursing, Sch Nursing HV, paediatricians, education, social care ,voluntary sector
How would the Network Function?
 Meet /contact regularly
 Work together on equipment, rehab prescriptions, structure to plan discharge
What actions need to be taken to develop a network for Rehabilitation after Major Trauma ?
 List of contacts to develop a Directory
 Wok together outreach
 Website – all professionals have access ,
 Accept referrals, training events , share knowledge
 Work with not for profit sector
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6.Concluding Comments ; Naomi Davis
1.
2.
3.
4.
5.
There is a need for a Rehabilitation network for Children after Major Trauma
Standards should be set in
Rehabilitation extend beyond neurorehabilitation
Services for Rehabilitation for Children after Major Trauma must be cohesive
The Idea of In reach from community services into tertiary care as well as outreach from
tertiary children’s centres
6. Communication and IT solutions must be explored
7. Equity of Care for rehabilitation needs to be achieved across the North West
8. Plans need to be drawn up from the day for the next steps
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Appendix 1 A Young Persons Experience of Major Trauma Care
The Accident
In September 2010 I was involved in a car accident. I have no recollection of the event (or for several
days before) and there is some confusion over what actually happened. It is thought however, that
the horse I was looking after at the time, Blue, spooked in the yard whilst we were getting ready for
a competition the following day. A series of unfortunate events led to the gate being wide open at
this point, with an extremely fit horse heading towards it. Although I would always say that people
should put their own safety before anything else this is something we rarely do when a loved one is
in great danger and there is little time to think. I have been told that I attempted to stop Blue in his
tracks. My Dad, who was with me at the time, said that I was successful and I had him heading back
towards the gate before Blue made a second attempt for freedom. Unfortunately this time he was
successful and with me hanging on to him ran down the drive and into the main road.
Although this road is not the busiest and regularly has long gaps with no traffic, sadly the moment
we reached the road we were in the path of a Landrover. In many ways we were fortunate as the
driver happened to be going below the speed limit in an area where a large number of people speed.
The landrover collided with Blue, and possibly myself- we are still not sure, before Blue fell on top of
me. Blue weighed around 400kg. As with most horses (and men!) he only had thoughts for food and
with what I have assumed to be several broken legs he got himself to the grass verge and spent the
last hour of his life eating grass. I like to think he would have been happy. I on the other hand was
lying unconscious in the road. I had my airway opened by the farmer whose yard it was, a family
friend who happened to be a bank theatre nurse in his spare time. A lady who had learnt first aid off
her mountain rescue husband arrived at some point and held my head still. Whilst this was going on,
my Mum had been rung by the farmer’s wife and he was on the phone to the ambulance service.
Mum, who thought I’d just had a bump in the yard was shocked to find the road blocked and the
flashing lights of police cars.
Pre Major Trauma Centre Care
The North West Air Ambulance arrived and I was treated by them and an on-call anaesthetist at the
scene before being flown to Preston Hospital. There I was stabilised, given blood transfusion,
ventilated and decisions were made about whether to start operating now or leave it all to a
specialist paediatrics hospital. My parents had been driven by the first aider and one of my brothers
had driven himself, unaware of how serious the situation I was in. I will always remember Mum
telling me at a later date that the A&E consultant came out and told them to get anyone there that
needed to be because he didn’t think I would survive. Apparently my brothers face dropped, we are
extremely close and I can only imagine how I would feel if our roles were reversed. My eldest
brother was rung in London as well as my Godmother and my uncle who was a paediatrician.
I am unsure about the timing in this but it was decided that I needed to go to PICU and a bed was
free at RMCH. I was transferred in the middle of the night by road ambulance accompanied by
medical staff.
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Major Trauma Centre Immediate Care
I was met by a fantastic team of consultants covering a wide range of specialities including
orthopaedics, urology and general surgery. My Dad and middle brother had gone home to get things
they thought we might need whilst my mum and eldest brother drove to Manchester. That night I
was in surgery for twelve hours. I had broken my pelvis in multiple places, ruptured my diaphragm
and had a compound fracture of my right humorous amongst many other breaks, scrapes and tears.
I had an external fixation put on my pelvis until a pelvic specialist from Wigan could come to repair
it. My orthopaedic surgeon was very worried about the nerve ending in my arm and there was a fear
that my right arm would be paralysed. I have been told there was great excitement when I wiggled
my fingers for the first time!
Intensive care ( 2 weeks)
Pain relief
I remember very little of intensive care. I was ventilated for the first seven days and then the
sedation was lifted. At this point, through the eyes of the intensive care consultant I was better and
he was happy to wheel me next door to HDU but the other consultants objected and I stayed for
another week. I have flashbacks of severe abdominal pain and I know the pain team spent lots of
time with me trying to get it under control. Morphine wasn’t effective and in the end I was put on
ketamine, quite ironic considering the nature of my accident.
Personal Care
When I came round I got very irritated by the beeping of my machines which seemed to be set off by
the slightest movement and I had a few demands for my parents; apparently I invented my own sign
language to communicate these! Firstly and most importantly I wanted my legs shaving! Very
important aged 14. One nurse sent Mum off to Superdrug with a list of things she thought would
make me more comfortable including nice soap, a razor and lip balm. On day ten a pelvic specialist
came and I spent a further seven and half hours in theatre where he put two plates in. I have no
recollection of meeting him but one of my most clear memories is having my hair washed and
French plaited a few days later by a fantastic nurse so I could feel pretty (when I was very
unattractive) for my friend coming to see me. Although some may think that having smooth legs and
clean hair is very trivial in the grand scheme of things, it was these small things that made such a
huge difference to my happiness which I believe affected my recovery.
Physiotherapy
Now that I was awake, all though very drugged up, lessons and physiotherapy began. I never
thought there would be lessons in intensive care but there I was telling my new teacher, extremely
slowly, what 2 x 3 was. My physio began with tiny finger stretches and elbow extensions as the
elbow joint of my broken arm was locked in flexion. I also had a chest physio who had a small plastic
object I had to blow in to, trying to raise a tiny ball. I did quite well at avoiding the teachers; because
I had so many consultants and two physios I was quite often being seen by one of these when they
arrived so they left me to it!
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Transfer out of Intensive Care to High Dependency
On day 14 I was moved to high dependency. I found it quite confusing to no longer have my own
nurse and I know my parents were worried about it too. It was a big change. It was on this ward that
demands first started being made of me. One consultant was insisting that I had my catheter taken
out due to the risk of infection. In my eyes he didn’t realise the difficulty I would have using a bed
pan or the fear a teenage girl has of wetting the bed. Even when I was very poorly I felt embarrassed
about such issues. At the same time the same consultant was demanding that I had what appeared
to be enema after enema as my bowels hadn’t been open for over three weeks. Although I now
know that he meant well and that he was worried he would need to operate again at the time I was
very confused about having things put up my bottom! The physios began using the hoist to get me
out of bed and sat in a chair which was a huge step forward. I got along with the nurses on HDU like
a house on fire. One night, mine logged on to my Facebook account on her phone for me and read
out all the messages people had been leaving for me. I was most pleased to hear that several of the
rugby team at the local boys grammar schooled had posted comments and it was great to hear from
the girls at school too.
Nutrition/ Appetite in High Dependency
I developed severe nausea during my time on HDU which I was given cyclazine for, extremely
effective for short periods of time until I had an allergic reaction to it causing scary uncontrollable
shaking. The nurses were trying to tempt me with food but I had no appetite. My first attempt was
ice cream; I had a tea spoon, decided I was full and gave the rest to Dad. Next I tried toast several
times and threw up after each lot, having only taken a couple of bites. It took me many years to get
over my fear of toast but I now happily eat it!
Realisation of Loss
It was on HDU that it really sunk in that my beloved horse was no longer with us. He had helped me
get through many hard times and we had developed a strong bond so I was obviously very sad. Dad
brought me some pictures in of him so I could think about all the good memories we had.
The physios began getting me to stand with a Zimmer frame, starting with only a few seconds. It was
incredibly difficult and I am still shocked at how quickly muscle wastes. It was decided that I would
remain in HDU until I was well enough to travel to Lancaster Hospital, where I would be close to my
home and my friends. Mum went home for the first time after a week in HDU; she stayed a night
before coming back with two of my school friends.
Move to a General Ward
It was with some surprise that when she arrived back at the hospital she found her daughter
confused and upset being moved from HDU to a general ward when this wasn’t part of the plan.
With the time it took to move me I barely saw my friends before they had to go home again, they
had travelled 60 miles to see me and only had a few minutes with me.
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Vulnerability /Personal Care on General Ward
I stayed on the ward for two weeks and it was the only part of my hospital experience I found
unpleasant. I was put on a side ward with three young toddlers and three creepy Dads. One
introduced himself by saying he had only just got custody of his child as his wife had stabbed
someone and another only came to see his child when social services were coming. The third spent
ages complaining about the service his child was receiving and even told us that a few weeks ago he
hadn’t been able to see a doctor all day because they were in theatre for twelve hours... I wonder
who had caused that! I got very little sleep which I found very difficult. As previously I had been
sleeping most of the time and was awake at funny times like the middle of the night. I found the
nurses had very little understanding, and I might even say interest, in how poorly I had been and still
was. I also found most of them didn’t smile and this was very unwelcoming, particularly on a
children’s ward. I am shocked to tell you that whilst I was on the ward I wasn’t actually offered a
wash. My Mum had been helping with my care previously but now she was left to do it all. Me and
my mum have a great relationship and I was quite happy for her to wash me but the majority of my
teenage friends would have been mortified being seen naked by their mother and yet no one asked
me if I was happy with this arrangement. Also there was no bath hoist or shower chair so Mum had
to shower me in the wheelchair (Don’t tell the physio’s!)
One night during my patient checks I was found to have a temperature of 43.5 degrees Celsius. I had
lost nearly two stone and as a result I was very cold all of the time, I had several blankets and thick
fluffy socks to keep me warm. These were quickly whipped off me despite my protest and the doctor
was called. I had not yet covered much human biology at school and although I knew the human
body temperature should be 37 degrees I did not understand why a few degrees mattered so much.
The situation was improved remarkably when an extremely handsome doctor arrived to see to me.
He discovered my central line had become infected so he took it out and gave me antibiotics. After
this I was moved to my own room and could finally sleep as much as I needed to. It was now that I
was told I really had to start eating or I would have to go back to theatre to have another central line
fitted. I can honestly say that eating was the most difficult part of my recovery but I tried my best
and ate minute amounts of plain rice or jacket potato which I managed to keep down.
Nutrition
My nausea remained very bad and I did not want to eat. I met with a dietician who gave me protein
drinks to try and increase my weight without having to eat huge amounts. Things progressed very
quickly all of a sudden and one day I had a go with crutches. I got the hang of these rapidly and could
soon get to the toilet by myself and hop up steps. I could only use these for a short period of time
due to my broken arm and used a wheelchair when I had a further distance to travel. I had little trips
around Manchester in my wheelchair, wrapped in blankets to keep me warm. The plan had still been
to transfer to Lancaster but Mum and my consultant decided that the eating difficulty could be best
managed at home! After five weeks, a much shorter time than expected, home I went. This was just
the beginning!
Discharge Home
On the way to the car I saw my face in a mirror for the first time and couldn’t believe it was me. I had
become so thin that I hardly recognised myself. I slept for the majority of the car journey home and
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became apparent how painful I would find speed bumps for the next six months, no matter how
slow we took them. I was very excited to tell my friends that I was coming home but I quickly
realised their lack of understanding of my situation when I was asked if I would be back at school on
Monday. I was thrilled to back in my little village and to hear the birds singing again. I found home
cooked food much easier to stomach although I still ate miniscule amounts and I relished having a
duvet and my favourite teddy bear again.
Wheelchairs
My OT assessment at the hospital had resulted in me coming home without a wheel chair as
apparently these could only be given to those who really needed them and I didn’t class as that. Had
it not been for kind neighbours who leant me their own I would have been housebound as I could
only travel very short distances on my crutches. The local OT came round very quickly to deliver the
items it had been decided that I needed. She was extremely confused as to why I hadn’t been
classed as needing a wheelchair and ordered me one. This was delivered in only a couple of days and
was very light weight so my parents found it much easier to push that the one we had borrowed.
Personal Care at Home
We had difficulties using the shower in my bathroom as the door is very narrow and there was little
room for my carer (mum) to help me get in or wash me. I am fortunate to live in an area full of
incredibly kind people and my neighbours offered me the use of their wet room with a walk in
shower. There was plenty of space and they even gave me a stool to sit on. I remember the shock of
the Manchester OT’s when they heard I would be using a neighbour’s bathroom as I imagine this
would never happen in cities! Getting washed took such a long time as I could do very little for
myself. We usually found the morning was gone by the time I had eaten breakfast and had a shower.
I remember finding simple tasks such as brushing my teeth or my hair incredibly difficult and tiring.
One of the problems we faced was that you can’t get temporary blue badges for disabled parking so
it was often a struggle when we went out in the car.
Physiotherapy at Home
In the first week of me being home I was in the village swimming pool. I used the hoist to get in
which was quite daunting and with the support of Mum and the use of floats I had a splash around
and did some floating. I wasn’t in long as I became tired so quickly and then there was the slow
process of getting washed and dried. I have always loved swimming and I felt a huge sense of
freedom to be able to move around a bit by myself. I also started going to physio at Lancaster
hospital this week. I went twice a week for the next few months. And have been on and off for the
last few years. They particularly worked on my core stability and continued with the arm extension
exercises. It was through physio that I became involved in hydrotherapy. Our local hydrotherapy is
run by two physios and it is a charitable organisation. I started by just walking with floats and other
simple exercises but I progressed quite quickly as my muscles began to strengthen again. Very
quickly my left leg became twice the size of my right leg just from weight bearing. I attended
hydrotherapy for one year and it was of huge benefit to me.
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Relationships with Friends and School
I became very isolated at home as my school friends had quickly lost interest in me. None of them
came to visit once I was home and I became very used to the company of those much older than me.
I had a trip in to school in November where once again I became exciting although it was short lived.
I had home schooling with different lessons a few times a week covering the basics of maths, science
and English but I struggled to concentrate for more than a few minutes at a time. The teachers were
very patient and took their time with me, going over things until they stuck.
Outpatient Appointments
At the end of November I had my first outpatient’s appointment with my pelvic specialist in Wigan.
He asked me how I was feeling and then told me to walk to x-ray! It was the most peculiar feeling to
walk again after nearly three months of non-weight bearing on my right leg and I felt extremely
wobbly! I tottered to and from x-ray and was thrilled to find out my x-rays showed great healing of
the bones. It then asked the all-important question of when I could ride again and he told me he was
happy for me to ride now! Although I could now walk I needed to use my wheelchair for long trips as
I still became very tired and my right leg was weak.
Back on a Horse
The next Saturday I went to my riding school. The girls were thrilled to see me walking and when I
told them I could ride again my favourite horse was tacked up in minutes. With my riding instructors
help I climbed on board and had a walk around, I had rather a large audience and I think most of
them were crying! It was the most fantastic feeling to be back on a horse but an incredibly emotional
one too! The next week I visited the children’s hospital for outpatients and was told very firmly that I
should not be riding by my General surgeon... It didn’t stop me but I did take it very slowly!
Returning to School
It became apparent that I would have to go back to school earlier than I should purely for social
reasons. For some reason the government will not let a patient be home schooled at the same time
as going into school for short visits. We had tried to get me back to school much earlier but I was
told I could not attend school in my wheel chair as I was a fire risk! How this is acceptable in the 21st
century I don’t know, and I still get very angry about it. I had my first session at the end of December
just before we broke up for Christmas so my home schooling stopped then. I only stayed for a couple
of hours and even though it was very relaxed work I was exhausted.
I started going back part time in January; I started by doing a few hours a week and building up.
Mum had to drop me off and pick me up at the door and I remember feeling completely zoned out
and taking in almost nothing for the first few months. My teachers did not understand and I was
regularly shouted at for not remembering things and for not attending all the lessons. It was difficult
because I had recovered so well physically and looked perfectly fine but I was still so tired all the
time. The teachers had obviously never come across serious health issues and had no idea how to
cope with them. I attended a very highly sort after Grammar school but I have a very poor opinion of
it after my experience. They should have been pleased just to see me in lessons but the worry of me
ruining the GCSE results was too much of a risk for them. I was put under incredible pressure to drop
subjects that I really enjoyed including history and food technology so that I could focus on the core
Completing the Jigsaw : Putting the Pieces Back Together Again V.1 Author: Mike Wafer
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subjects and even told that “perhaps the school wasn’t for me”. I was told that I would never catch
up and I was predicted D’s or E’s in an environment where few girls get below an A. My self-esteem
plummeted and every day was difficult. I no longer fit in with the other girls at school, I had been
forced to grow up very quickly and there was nobody I connected with. Despite being at school for
the social reasons I became more and more isolated.
By Easter I was nearly back in full time education, only missing the one day for a rest and
hydrotherapy. I had been offered a place at another school and a lot of me wanted to accept it but
being an extremely determined (some may say stubborn) girl I refused to let the school win and
stuck it out. The sense of relief I felt when the summer holidays arrived was huge. I spent a lot of
time catching up on school work but we had a long family holiday in Wales where I could chill out
and literally forget about all my worries.
As September grew closer my fear of returning to school began to grow and to make matters worse
I sprained a ligament in my sacroiliac joint causing incredible pain, difficulty moving and once again
having to have mum wash and dress me.
Psychological effects
I became very depressed, although people who knew nothing of my current situation tried to tell me
I wasn’t, and it was at this point that I began to see my GP very regularly. I am very lucky to have
such a wonderful doctor who put me on the end of his day so I could stay and talk as long as I
needed to. He managed to get me bumped up the list for seeing a psychologist who I also saw
regularly. With the combination of the two I managed to stay relatively calm at school. I was still
exhausted all the time, always being in bed by 8pm at the latest, having no social life and still
struggling at school the next day.
Perceptions of School
The school continued to be very unsupportive and there were several heated arguments between
me and my deputy head. I had been awarded ESAP funding giving me £3000 a year to help get me
back into education and the school were spending none of it and hoping to keep it for themselves.
We did spend some on private lessons in maths and science and found these extremely useful. I
fought the entire to time I was at school and eventually I reaped the reward. After missing nearly six
months of my first GSCE year I achieved five A*’s, three A’s and a B ! It makes me even happier to
say that two of my A*’s were in History and Food Technology, the subjects I had fought to carry on.
Continuing effects of accident 3 years before
It is amazing how even health professionals have a lack of understanding about how long it takes to
recover. I was told by several doctors that I was better and had to get over it but they weren’t living
my life with my body. Three years after the accident and I was still under three consultants following
issues related to the initial injuries. I still suffered with severe nausea and I was still struggling to eat.
It turned out that the volume of tablets I was taking to cope with this raised my prolactin level so
high that my periods stopped and I was suffering from other gynaecological problems which caused
me severe pain and it turned out that I had damaged nerve endings in my vagina. It was here again
that my GP was very useful, we still saw each other regularly and we tried different medication until
we found the ones that worked best.
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Recovery
It is now coming up to five years since that accident and I’m pleased to say that I no longer have any
consultants, I no longer see my GP regularly and I am loaning a beautiful (but huge) horse! I
completed my A levels last year and I am currently in my Gap Year and enjoying it thoroughly. I work
as a receptionist in a GP surgery and as an ambulance care assistant on a private ambulance. I have
been to Uganda on a medical mission for three weeks and have an exciting summer of travelling and
horse competitions coming up before I go to university in September. I am going to Bradford
University to study clinical sciences before hopefully going on to study medicine at Leeds University.
Advice for Professionals
I would like to offer you two pieces of advice; firstly to smile at your patients and secondly don’t
judge a book by its cover. Just because a patient looks well it doesn’t mean they are! It takes a very
long time and a huge number of people to ensure full recovery after major trauma.
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The North West Children’s Major Trauma Network
Completing the Jigsaw: Putting the Pieces Back Together Again. Rehabilitation
for Children after Major Trauma
Friday 24th April 2015 at the Centre, Birchwood, Warrington,WA3 6YN
Time
8.15- 9.00
9.00 -9.05
Subject
Registration
Opening Comments
Speaker
Nicola Adamson Associate Director Strategy,
Royal Manchester Children’s Hospital
Session 1 Chair :Rachel Greer Manager Head and Neck Alder Hey Children’s Hospital
9.05 – 9.25
Rehab in Context MT Pathway
Helen Blakesley Rehabilitation Coordinator
Royal Manchester Children’s Hospital/Sharon
Charlton MCSP Rehabilitation Coordinator
Alder Hey Children’s Hospital
9.25-9.35
Patient perspective
TBC
9.35- 9.55
Psychological Impact MT
Stewart Rust, Consultant Clinical Psychologist
Royal Manchester Children's Hospital
9.55 – 10.15
Return to Education
Tracy Gallier Assistant Head Teacher. Royal
Manchester Children’s Hospital
10.15- 10.35
NHS England Overview
Anthony Prudhoe Programme of Care Manager
NHS England
10.35-11.00
Coffee/Tea Break
Session 2 : Chair Bimal Mehta : Joint Clinical Lead North West Children’s Major Trauma Network
11.00-11.20
Neurorehabilitation after Major
Dr Ram Kumar
Trauma
Consultant Paediatric Neurologist
Dept. of Neurology, Alder Hey Children’s NHS
Foundation Trust
11.20 -11.40
Community Therapists and Rehab Gareth Troughton MCSP Specialist Paediatric
Physiotherapist St Anne’s
11.40 – 12.00 Complex Step down
Lisa Kauffman ,Consultant Paediatrician
12.00 -13.00
Lunch
Session 3 : Chair Naomi Davis Joint Clinical Lead North West Children’s Major Trauma Network
13.00 -13.20
Fractured Femur / Limb
Rose Davies Orthopaedic Nurse Specialist
Reconstruction : Rehabilitation in Sharon Atherton Alder Hey Children’s Hospital
children
13.20 – 13.25 Questions
13.25-13.50
Traumatic Amputation
Dr Fergus Jepson, Consultant Orthopaedic
Medicine , Lancashire Teaching Hospitals Trust
13.50 – 13.55 Questions
13.55 – 14.40
Break out Group Work
Workshop
14.40 – 15.00 Coffee/Tea
15.00 -15.20
Feedback Group Work
15.20 -15.40
Overview and Way Forward
Miss N.Davis, Joint Clinical Lead NW Children’s
Major Trauma Network.
15.40 – 16.00 Concluding Comments
Dr Mehta Joint Clinical Lead NW Children’s
Major Trauma Network
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Delegates Completing the Jigsaw: Putting the Pieces Back Together Again. Rehabilitation
for Children after Major Trauma Friday 24th April 2015 at the Centre, Birchwood,
Warrington,WA3 6YN
NAME
1. Adamson, Nicola
2. Aitken,Iris
3. Atherton Sharon
4. Bacon Wendy
5. Barnes Lynne
6. Bedson Chris
7. Bell Ingrid
8. Benbow Helen
9. Benstead Jacqueline
10. Blakesley Helen
11. Boon Rob
12. Booth Nicola
13. Brennan Adele
14. Brown Amanda
15. Brown Shelley
16. Butler Frances
17. Chamberlain Jeanette
18. Charlton Sharon
19. Clancy Tanya
20. Dainty Jennifer
21. Davies Rosemary
22. Davies Leanne
23. Davis Naomi
24. De Goede ,Dr Christian
25. Dixon Gill
26. Dunning Annette
Job Title , Organisation
Associate Director Strategy, Royal Manchester
Children’s Hospital
Assistant Practitioner, NMW/TCU Alder Hey
Children’s Hospital, Liverpool
Alder Hey Children’s Hospital, Liverpool
ODN
GM
Care Co-Ordinator, Children’s Community
Assisted Ventilation Service Royal Blackburn
Hospital.
Lead Nurse/Matron, Paediatric Family Divison
Royal Bolton Hospital
Ward Manager NMW/TCU, Alder Hey Children’s
Hospital, Liverpool
Children's Complex Care Specialist Nurse
Northwest Commissioning Support Unit, Countess
of Chester Health Park
Paediatric Occupational Therapist, Bridgewater
Community Healthcare, Platt Bridge Health Centre
Clinical Therapy Manager for Rehabilitation,
Physiotherapy Dept., Royal Preston Hospital
Major Trauma Rehabilitation Co-Ordinator, Royal
Manchester Children’s Hospital
Consultant Paediatrician - Royal Manchester
Children’s Hospital
Senior Sister Newborn ICU St Marys
Family Support, Royal Manchester Children’s
Hospital
Clinical Manager, CAMHS Families Directorate,
Bridgewater NHS Foundation Trust
Paediatric Nurse The Complete Group, Telford,
Clinical Team Lead, Children’s
PhysiotherapyCentral Community Health Centre, ,
Douglas, Isle of Man
Service Manager, NMSS Clinical Business Unit
Alder Hey Children’s Hospital, Liverpool
Major Trauma Rehabilitation Co-Ordinator Alder
Hey Children’s Hospital, Liverpool
Team Lead Physiotherapist Paediatrics Royal
Oldham Hospital
Clinical Psychologist, Alder Hey Children’s
Hospital
Orthopaedic Nurse Specialist Alder Hey
Children’s Hospital, Liverpool
Specialist Nurse Practitioner - Neurosciences
Acquired Brain Injury
Joint Clinical Lead North West Children’s Major
Trauma Network
Consultant Paediatric Neurologist, Royal Preston
Hospital
Paediatric Nurse CCNT St Helens and Knowsley
NHS Trust
Senior Children’s Community Nurse Bridgewater
Community Healthcare,
L&SC
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27. Nicola Durham ,
28. Edwards Tracey
29. Ellery Patsy
30. Ellis Pauline
31. Emmerson Karl
32. Fillery Caroline
33. Fissler Sarah
34. Frith Dawn
35. Gallier Tracy
36. Gould Deborah
37. Gray Dr Vicky
38. Greer Rachel
39. Hargreaves Vicki
40. Hazlehurst Kath
41. Hewlett, Kate
42. Hogg Denise
43. Horsley Louise
44. Hutchens Lisa
45. Fergus Jepson
46. Jones Samantha
47. Kauffman Lisa
48. Keable Hannah
49. Kisseh Sarah
50. Kumar Ram
51. Lancaster Rachel
52. Lees Susan
53. Lipshen Gabi
54. Lloyd Gaynor
55. Mehta Bimal
Children’s Complex Needs/Additional Needs Sister
Paediatric Outreach Team, Royal Preston Hospital
Lead Nurse, Paediatrics The Complete Group,
Telford, TF2 9TU
Ward Manager, Neurosurgical Unit, Alder Hey
Children’s Hospital, Liverpool
Community Nurse Manager Health Visiting
Service, Wirral Community NHS Trust
Neurology Clinical Nurse Specialist NMW/TCU
Alder Hey Children’s Hospital, Liverpool
Occupational Therapist Alder Hey Children’s
Hospital, Liverpool
Emergency Paediatric Trainee Alder Hey
Children’s Hospital, Liverpool
Paediatric Occupational Therapist
Blenheim
House Child Development and Family Support
Team, Whitegate Health Centre
Assistant Headteacher Hospital Education, Royal
Manchester Children’s Hospital
Specialist Speech and Language Therapist
Bridgewater Community NHS Foundation Trust
Consultant Clinical Psychologist Alder Hey
Children’s Hospital, Liverpool
General Manager, Alder Hey Children’s Hospital,
Liverpool
Ward Sister, NMW/TCU Alder Hey Children’s
Hospital
Royal Manchester Children’s Hospital
L&SC
Advanced Physiotherapist,Liverpool Community
Physiotherapy
Complex Health Needs Service Lead for
Children/Young People Bridgewater Community
Healthcare
Clinical lead , Paediatric Occupational Therapy,
Halliwell Health Centre, Bolton
Highly Specialised Paediatric Physiotherapist,
Neurosciences, Bristol Children’s Hospital
Consultant Orthopaedic Medicine , Lancashire
Teaching Hospitals Trust
Major Trauma Co-Ordinator, Royal Manchester
Children’s Hospital
Consultant Community Paediatrician, Royal
Manchester Children’s Hospital
Trauma & Rehabilitation Co-Ordinator Sheffield
Children's Hospital
Paediatric Occupational Therapist, Royal
Manchester Children’s Hospital
Consultant Paediatric Neurologist, Alder Hey
Children’s Hospital, Liverpool
Chartered Clinical Psychologist Preschool
Integrated Services for Children Rowan House
Clinical Service Manager Active Assistance
Paediatric Trauma Rehabilitation Lead Bolton
Children’s Occupational Therapist, Disabled
Children’s Services, Liverpool City Council
Joint Clinical Lead ,North West Children’s Major
Trauma Network
C&M
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56. McCullagh Dr Gary
57. O'Neill Cheryl
58. Partington Naomi
59. Pemberton Angela
60. Perera Dr G Sheran
61. Perry Shona
62. Preston,Christopher
63. Prudhoe Anthony
64. Ramirez Roberto
65. Roberts Nia
66. Rodway,Sarah
67. Rust Stewart
68. Sakthivel Kumar
69. Shackleton Tracey
70. Simpson Jayne
71. Smith Barbara
72. Starbuck-Ashton Joanne
73. Sutch Alison
74. Spurling Emma
75. Stringman Laura
76. Sutcliffe Julie
77. Tatham Steve
78. Toman Marie
79. Toft Alison
80. Trenchard Sian
81. Troughton Gareth
82. Vasallo Grace
83. Wafer Mike
84. Walton Dr Krystyna
Consultant Paediatric Neurologist, Dept. of
Paediatric Neurology,
Paediatric Physiotherapist, Bridgewater
Community Healthcare, Platt Bridge Health Centre
Paediatric Nurse Manager, The Complete Group,
Telford, TF2 9TU
Clinical Tutor, Radiology
Wirral University
Teaching Hospital
CD Community and Neurodevelopmental
Paediatrics. Royal Blackburn Hospital
Consultant Acute and Community PaediatricsBetsi
Cadwaladr University Health Board
Advanced Paramedic Practitioner South Sector
North West Ambulance Service
Programme of Care Manager NHS England
Neurosurgical Consultant,Neurosurgery, Royal
Manchester Children’s Hospital
Paediatric Physiotherapist Ysbyty Glan Clwyd
Children’Occupational Therapist,Rowan House
,Hyde,Cheshire
Consultant Clinical Psychologist , Royal
Manchester Children’s Hospital
Consultant Paediatrician, Salford Royal NHS
Foundation Trust
Major Trauma Co-Ordinator,Alder Hey Children’s
Hospital
Practice Educator - Paediatrics Ward E5, Bolton
NHS Foundation Trust
Quality Improvement Program Lead NHS England
Family Support , Royal Manchester Children’s
Hospital
Disability Nurse Specialist for Children and Young
People Bridgewater Community Healthcare,
Physio Team Leader Paediatric Occupational
Therapy, Halliwell Health Centre, Bolton
Community Paediatric Physiotherapist Alder Hey
Children’s Hospital, Liverpool
Clinical Lead in Paediatric Physiotherapy,
Physiotherapy Dept., Royal Preston Hospital
Lead Commissioner – Maternity, Children and
Families
Warrington Clinical
Commissioning Group
Children’s Complex Needs/Additional Needs Sister
Paediatric Outreach Team, Royal Preston
Hospital
Highly Specialist Team Leader Paediatric
Occupational Therapy, Halliwell Health Centre,
Bolton
Clinical Psychologist
Highly Specialist Paediatric Physiotherapist St
Anne’s
Consultant Paediatric Neurologist, Royal
Manchester Children’s Hospital
Major Trauma Network Manager Major Trauma
Centre, Royal Manchester Children’s Hospital
Major Trauma Neuro Rehabilitation Consultant,
Hope Hospital, Salford
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85. Williams Clare
86. Wright Elly
87. Wright Linda
88. Wright Liz
Highly Specialised Paediatric PhysiotherapistChild
Development and Family Support Team,
Whitegate Health Centre
Specialist Health Visitor Wirral Community NHS
Trust
Clinical Manager, Children’s Community Nursing
Services Children's Specialist Services, Children &
Families Directorate Bridgewater NHS Foundation
Trust
Principal Physiotherapist in Neurosciences
Physiotherapy Department Birmingham Children's
Hospital
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