1. Moving beyond the bed One womans journey outof her bed
following femurfractureMargaret Goodall, Eleanor Barrett
2. 2 This presentation is dedicated to the memory of one lady
who exceeded all expectations
3. 3 San Fillipo Syndrome Mucopolysaccharidoses III Genetic,
autosomal recessive Lack of enzyme to break down glycosaminoglocan
heparin sulphate. Build up of sugars in brain and other organs.
Management of symptoms
4. 4 Effects of San Fillipo Syndrome for Jean Normal
development to age 2- 6 Learning delay and regression Speech delay
and regression, decreased swallow Stiff joints Over production of
mucus respiratory infections Urinary tract infections Congestive
Heart Failure, Enlarged liver and spleen Sleep disturbance
Behavioural challenges
5. 5 Why was Jean in bed? Series of chest infections and
hospital admissions Spontaneous fracture of Right Neck of Femur
Changing body shape and contractures Spontaneous fracture of Left
Shaft of femur
6. 6 Jeans Priorities 1 to have some social interaction 2 to
have a shower 3 to be comfortable and pain free particularly in
bed.
7. 7 Our objectives Maintain lung health. Maintain skin
integrity. Maintain available joint range of movement. Safe working
practice for staff Comfortable seating and mobility Maintain
personal hygiene
8. 8 Comfort in bed
9. 9 Seating comfort and mobility In conjunction with
Wheelchair outreach clinic Comfort over postural support Flat as
possible for transfers Able to be transported in van Issued with
Regency Care Chair
10. 10 House design Level Family Bath access room room shower
Jeans roomKitchen/living area Patio and garden area
11. 11 Bed to wheelchair transfers Pat slide with 3 staff Chair
did not go completely flat Not comfortable for Jean Staff levels
Staff safety Technique to be used occasionally
12. 12 Lateral transfer difficulties The Regency Over reaching
for chair reclined to lateral transfers. the full extent
13. 13 Sling Options Orthopaedic Consultant consent Sling
options remain in semi-reclined position, maintain hip position
flexion and abduction and external rotation at hips Ease of
positioning and removal
14. 14 Sling choice Sling tried in first instance
15. 15 Jeans sling
16. 16 Hanger barsH- style hanger bar X- style hanger bar
17. 17 Choice of hoist Minimise number of transfers Staff
numbers needed to transfer Space to move Mobile vs Gantry Access to
shower
18. 18 Shower options Swap bedrooms Widen current doorway to
bedroom Add new doorway from bedroom to lounge Extra gantry track
in bathroom Different shower trolley
19. 19 Jeans shower trolley Short shower trolley fits through
doorway into bedroom for transfers
20. 20 Meeting Jeans priorities Jean was Able to get out of the
bedroom and join in with others in the lounge, Having regular
showers As comfortable as possible in her bed and wheelchair
21. 21 Achieving our objectives Maintained Jeans lung health.
Maintain her skin integrity. Staff working safely Maintained
available joint range of movement. Comfortable seating and
mobility. Access to social interactions Improved her personal
hygiene
