Dr Gillian Charlotte Halley
Consultant
Children’s Long Term Ventilation Service
London Health Conference 2010
Pan Thames Region
London
Bedfordshire
Hertfordshire
Essex
Kent
Surrey
Sussex
NICU - PICU - HDU
ward - hospice - home
Care closer to home
• Prolonged hospital stay is no longer
acceptable
• Improvements in ventilator technology
• Change in ...
Average time to discharge?
7-9 months from when medically stable
Why does it take so long?
LTV Discharge Planning
 Recognise need for LTV – start dc planning and parent
education & training
 Acute Key Worker (AKW) contacts Community K...
eligible NHS
funds?
Access to NHS funds (pathway)
contact PCT if no CKW in post
MDT
care closer to
home
staged discharge
m...
Delays in decision Making
Children’s and young people’s continuing care
Review after 3 months or as appropriate
7.
Review
1.
Identify
2.
Assess
3.
R...
14
(i) Recognise the need for discharge planning
£180,000
£250,000
(ii) Carry out a Health Needs Assessment
Key Stages Cas...
Hospital Bed Day Costs
Birth to Tracheostomy
£290,000
Tracheostomy to HNA
£430,000
£53,008
£270,000
£250,000
£40,000
£205,000
Inpatient cost from tracheostomy = £820,000+carers 20w
Potential Savings = £660...
Obstacles to discharge
• small numbers; highly variable and complex patient
group
• reinventing the wheel
• multiagency co...
“You never really understand a person until you consider
things from his point of view-until you climb inside of his
skin ...
Case Study One
Care Closer to Home
• fifth child (CCHS)
• medically stable
• 2 bed house
• owner occupier
limited stock
restart discharge if GP changes
risk losing school for siblings
6m private rented = cost effective
no joint ...
Hospice as a transition to home
hospice
available
no
Funding
decision
hospice
transfer
identify training needs
RBH TRAINING
PACKAGE
identify training
need...
Training
Simulation
Care Closer to Home (Days)
£443,500
£178,000
Here he is Edward Bear, coming
downstairs now, bump, bump,
bump, on the back of his head,
behind Christopher Robin. It is,...
Case Study 2
•Born prematurely
•local hospital unable to
accept transfer for 3 months
•direct discharge home
Direct Discharge Home
“We found the process
happened almost without a
hitch, especially with Christmas
around the corner a...
£168,000
Weaned off ventilator & Tracheostomy
removed
“We had our first "normal" night last
Friday with no nurses or equipment
and ...
How can we ensure the
children are safe?
• standardise clinical pathway
• standardise education and training
• empower par...
Communication
Advanced Care Plans
All about me… I have
Spinal muscular atrophy - borderline type 1 / 2
BiPAP when I sleep
I must not have anything orally
I ...
Tetraplegic man's life support 'turned
off by mistake
Tetraplegic Jamie Merrett, 37, had a bedside camera set up at his
ho...
Elisee 150
9 12
2 20 0.9NO
25 1.2
PIP: 9 + 12 = 21 cm H20
Communication
Communication
Share Knowledge
Communication
Practice Emergency Plans
Communication
Structure the conversation
Aims
• Missed communications
• Prevent breakdowns
• A common language
• Memory pr...
e-VENT: Web Based Patient Pathway
NHS London Innovator Award 2009
Finding Solutions
“If the person you are
talking to doesn't appear to
be listening, be patient. It
may simply be that they...
London health conference 3 nov (halley) binary
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London health conference 3 nov (halley) binary

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London health conference 3 nov (halley) binary

  1. 1. Dr Gillian Charlotte Halley Consultant Children’s Long Term Ventilation Service London Health Conference 2010
  2. 2. Pan Thames Region London Bedfordshire Hertfordshire Essex Kent Surrey Sussex NICU - PICU - HDU ward - hospice - home
  3. 3. 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?
  4. 4. Average time to discharge? 7-9 months from when medically stable
  5. 5. Why does it take so long?
  6. 6. LTV Discharge Planning
  7. 7.  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 commissioner  Health Needs Assessment (HNA) carried out  Referral to social services  Housing assessment  1st MDT  Funding agreed  Equipment list & ventilator purchased  Care Provider Identified  Recruitment of carers (CRB)  Training of carers Key Stages in Discharge
  8. 8. eligible NHS funds? Access to NHS funds (pathway) contact PCT if no CKW in post MDT care closer to home staged discharge multiprofessional reports equipment ordered house ready training needs met parents confident HOME recruitment? yes no Regular MDTs training unsuitable private rented LA suitable House proceed with discharge owner No- unsure yes PCT identify cross boundary issues community OT suitable with adaptations report to GP & Community agreed care package identify care provider identify training needs copy to parents training Funding decision
  9. 9. Delays in decision Making
  10. 10. 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
  11. 11. 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)
  12. 12. Hospital Bed Day Costs Birth to Tracheostomy £290,000 Tracheostomy to HNA £430,000
  13. 13. £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
  14. 14. 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
  15. 15. “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.”
  16. 16. Case Study One Care Closer to Home • fifth child (CCHS) • medically stable • 2 bed house • owner occupier
  17. 17. limited stock restart discharge if GP changes risk losing school for siblings 6m private rented = cost effective no 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 authority market factors finding a buyer finding a house affordability family time limited (hospital visits) new purchase
  18. 18. Hospice as a transition to home
  19. 19. hospice available no Funding decision hospice transfer identify training needs RBH TRAINING PACKAGE identify training needs agency training Patient Care Provider AGENCY additional staff required
  20. 20. Training
  21. 21. Simulation
  22. 22. Care Closer to Home (Days)
  23. 23. £443,500 £178,000
  24. 24. 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...
  25. 25. Case Study 2 •Born prematurely •local hospital unable to accept transfer for 3 months •direct discharge home
  26. 26. 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”.
  27. 27. £168,000
  28. 28. 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”
  29. 29. How can we ensure the children are safe? • standardise clinical pathway • standardise education and training • empower parents • central support & follow up • patient directed care
  30. 30. Communication Advanced Care Plans
  31. 31. All about me… I have Spinal muscular atrophy - borderline type 1 / 2 BiPAP when I sleep I must not have anything orally I can move my arms and feet, when I am well I have Good head control Please be gentle when touching me & use amitop Talk to me and ask me questions I can answer so Please listen to me BiPAP settings IPAP 17cmH20 EPAP 5 cmH20 This can changed when I am unwell but be cautious about 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 air The Brompton respiratory team look after my BiPAP Breathing & Physio When I am settled my respiratory rate is usually 20-25 bpm I can have a productive cough and will ask you wipe my face When I’m well: I usually have steady breathing When 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 chair I 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 Feeding I have a PEJ I am fed with Peptamen Junior @ 37mls/hr & a 4 hour break I cannot eat but I am allowed to try tastes and textures of food with mum & dad or the speech and language therapist Communication
  32. 32. 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
  33. 33. Elisee 150 9 12 2 20 0.9NO 25 1.2 PIP: 9 + 12 = 21 cm H20 Communication
  34. 34. Communication Share Knowledge
  35. 35. Communication Practice Emergency Plans
  36. 36. Communication Structure the conversation Aims • Missed communications • Prevent breakdowns • A common language • Memory prompt • Reduce the time spent
  37. 37. e-VENT: Web Based Patient Pathway NHS London Innovator Award 2009
  38. 38. 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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