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Dr Gillian Charlotte HalleyConsultant
Children’s Long Term Ventilation Service
London Health Conference 2010
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Pan Thames Region
London
Bedfordshire
Hertfordshire
Essex
Kent
Surrey
Sussex
NICU - PICU - HDUward - hospice - home
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Care closer to home
• Prolonged hospital stay is no longer acceptable
• Improvements in ventilator technology
• Change in expectations
• What do families want?
How do we make it safe?
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Average time to discharge?
7-9 months from when medically stable
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Why does it take so long?
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LTV Discharge Planning
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Recognise need for LTV – start dc planning and parent education & training
Acute Key Worker (AKW) contacts Community Key Worker (CKW)
CKW informs children’s continuing care commissionerHealth Needs Assessment (HNA) carried outReferral to social servicesHousing assessment1st MDTFunding agreedEquipment list & ventilator purchasedCare Provider IdentifiedRecruitment of carers (CRB)Training of carers
Key Stages in Discharge
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eligible NHS funds?
Access to NHS funds (pathway)
contact PCT if no CKW in post
LAgrant support MDT
care closer to home
staged discharge
multiprofessional reportsequipment ordered
house readytraining needs metparents confident
HOME
recruitment?
yes no
Regular MDTs
training
unsuitable
private rented LA
suitable
House
proceed with discharge
source alternative property
owner
No-unsure
yes
PCT identify cross boundary issues
community OTCKW
HNA
suitable with adaptations
report to GP & Community
agreedcare
package
identify care provider
advertise/recruit/CRB
identify training needs
equipment list
copy to parents
training
AKW
Funding decision
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Delays in decision Making
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Children’s and young people’s continuing care
Review after 3 months or as appropriate
7.Review
1.Identify
2.Assess
3.Recommend
4.Decide
5.Inform
5.Inform
6.Deliver
Referral Provision
Maximum working days for each stage of the continuing care
Cumulative working days for continuing care pathway
1 8
9
14 5
23 28
DH March 2010
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14
(i) Recognise the need for discharge planning
£180,000
£250,000
(ii) Carry out a Health Needs Assessment
Key Stages Case Study
(i)
(ii)
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Hospital Bed Day Costs
Birth to Tracheostomy£290,000
Tracheostomy to HNA£430,000
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£53,008
£270,000
£250,000
£40,000
£205,000
Inpatient cost from tracheostomy = £820,000+carers 20w
Potential Savings = £660,000 + carers <20w
Key Stages Case Study
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Obstacles to discharge• small numbers; highly variable and complex
patient group
• reinventing the wheel
• multiagency communication
• paper based system - erratic, no structure
• lack of urgency in decision making
• lack of structured pathway
• commissioning strategies & responsibility for funds
• no longitudinal tracking for LTCs
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“You never really understand a person until you consider things from his point of view-until you climb inside of his skin and walk around in it.”
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Case Study OneCare Closer to Home
• fifth child (CCHS)
• medically stable
• 2 bed house
• owner occupier
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limited stockrestart discharge if GP changes
risk losing school for siblings
6m private rented = cost effectiveno joint social-health budget
no authority to enable this option
OWNER OCCUPIER Pt needs own room for home care
source alternative property
private rented
HOUSE NOT SUITABLE
local authoritymarket factorsfinding a buyerfinding a house
affordabilityfamily time limited (hospital visits)
new purchase
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Hospice as a transition to home
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hospice available
staged discharge
no
Funding decision
hospice transfer
identify training needs
RBH TRAINING PACKAGE
identify training needs
agency training
Patient
CareProvider
AGENCY
additional staff required
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Training
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Simulation
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Care Closer to Home (Days)
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£517,500
£443,500
£178,000
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Here he is Edward Bear, coming
downstairs now, bump, bump,
bump, on the back of his head,
behind Christopher Robin. It is,
as far as he knows, the only
way of coming downstairs, but
sometimes he feels that there
really is another way, if only he
could stop bumping for a
moment and think of it...
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Case Study 2
• Born prematurely
• local hospital unable to accept transfer for 3 months
• direct discharge home
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Direct Discharge Home “We found the process
happened almost without a
hitch, especially with
Christmas around the corner
and are very grateful for all
the work put in by the LTV
team, discharging hospital
and key workers to make it
happen”.
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IA Cost Savings (Dec-April)
£522,000
£168,000
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Weaned off ventilator & Tracheostomy removed
“We had our first "normal" night last Friday with no nurses or equipment and we all slept 6 hours”
“...everyone here is mentioning how much happier she is at the moment”
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How can we ensure the children are safe?
•standardise clinical pathway
•standardise education and training
•empower parents
•central support & follow up
•patient directed care
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Communication
Advanced Care Plans
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All about me… I haveSpinal muscular atrophy - borderline type 1 / 2BiPAP when I sleepI must not have anything orallyI can move my arms and feet, when I am well I have Good head controlPlease be gentle when touching me & use amitopTalk to me and ask me questions I can answer so Please listen to me
BiPAP settingsIPAP 17cmH20 EPAP 5 cmH20This can changed when I am unwell but be cautiousabout raising the EPAP as I may get hyperinflated
To change settings - slide the black notches up, the pressure is set where the light flashes
My oxygen saturations are normally >100% in airThe Brompton respiratory team look after my BiPAP
Breathing & PhysioWhen I am settled my respiratory rate is usually 20-25 bpmI can have a productive cough and will ask you wipe my faceWhen I’m well: I usually have steady breathingWhen I am unwell: I have nasal flaring, irregular breathing movements, tracheal tug, intercostal, subcostal & sternal recession
Hello I am Lily
My Development?
DOB:
All about me…
I have chronic lung disease and tracheobronchomalacia which means I need a ventilator to keep my airways open
Ventilator (Elisee 150)
•I need to use my ventilator all of the time •I can breathe but the ventilator supports me.•If there is a problem with my ventilator I have a spare ready, please use this.
Breathing & Physio
My tracheostomy is a 4.5 Bivona Flextend
If I need suctioning please suction to 11cm with a size 8 catheter
Named Professionals
I like …sitting in my chairI dislike …mouthcare, please be gentle and tell me what you are going to do
When I’m upset… I like to be patted to make me feel better
My routine is:
Mum/Dad come to visit at 10am &help me wash and change my tracheostomy tapes
My mum is called
My dad is called.
Resuscitation / levels of care
FeedingI have a PEJI am fed with Peptamen Junior @ 37mls/hr & a 4 hour breakI cannot eat but I am allowed to try tastes and textures of food with mum & dad or the speech and language therapist
Communication
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Tetraplegic man's life support 'turned off by mistake
Tetraplegic Jamie Merrett, 37, had a bedside camera set up at
his home in Wiltshire, after becoming concerned about the
care he was receiving. An agency nurse working for the NHS
was filmed switching off her patient's life support machine by
mistake.
http://www.bbc.co.uk/go/em/fr/-/news/uk-england-wiltshire-11595485
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Elisee 150
9 12
2 20 0.9NO
25 1.2
PIP: 9 + 12 = 21 cm H20
Communication
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CommunicationShare Knowledge
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CommunicationPractice Emergency Plans
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CommunicationStructure the conversation
Aims• Missed communications• Prevent breakdowns• A common language• Memory prompt• Reduce the time spent
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e-VENT: Web Based Patient Pathway
NHS London Innovator Award 2009
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Finding Solutions
“If the person you are talking to doesn't appear
to be listening, be patient. It may simply be that they have a small piece of fluff in their
ear.”
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