Sophie's Story - Slow Stream Rehabilitation
Setting the Scene
- Sophie - Young female age 22 at time of accident
- Working full time, industrious & ambitious, about to take up position as air hostess for Air 2000
- Living at home with mum and sister
- Loved going out to socialise with friends
- RTA 5 February 1993 - driver took a corner too fast & was killed
- Front passenger - Sophie's boyfriend
- Sophie & friend were rear passengers in vehicle - total of 7 occupants
- Admitted to local A&E, transferred the same day to Large General Hopital with Neurological services
What Happened Next?
- Admitted to ICU - GCS 3
- Neurosurgical intervention to relieve raised ICP - survival said to be extremely fragile
- 1-2 weeks later transferred to general ward
- September 1993 transferred to Step Down Hospital - 7 months post accident
What were the problems?
- Poor prognosis for recovery
- PEG fed
- Multiple contractures - few preventative measures implemented
- Total dependancy for all tasks
- Blind in one eye
- No effective communication system identified
- Clinicians advised withdrawal of feeding to allow death to occur
- Preperations for Court Hearing - regarding withdrawal of feeding
- Specialist assessment of Sophie arranged Prior to Court Hearing
- Some hand movements identified to indicate yes/no - Court Hearing cancelled
What rehabilitation was offered?
- Sophie did survive, transferred for rehabilitation - New Year 1994 in NHS facility
- Neurosurgical intervention - cranioplasty & removal of shunt
- Multidisciplinary rehabilitation implemnted for a two year period
- Transferred to long term placement at Leonard Cheshire residential home 10th January 1996 - 3 years post injury
What did we find?
- Young woman with very severe brain injury
- GCS 3; retrograde amnesia - 5/6 weeks; post traumatic amnesia estimated at 8-9 months
- Poor head control - remained in flexed position
- Non weight bearing
- Contractures in all 4 limb but able to hold cup
- Oral feeding commenced
- Continent of bowel but not bladder
- 7 year post injury
- Litigation concluded
What did we do?
- Case management intervention commenced in the year 2000 - plans made for 3 stages of intervention
- Stage 1 - initial plan to improve mattes whilst she remained accomodated in the Leonard Cheshire facility
- Stage 2 - networking services & resources to enable Sophie to move to achieve her goal of moving into her own adapted accomodation
- Stage 3 - managing Sophie with a bespoke rehabilitation & support package living with her family
- Neuro physiotherapist engaged - serial casting of upper & lower limbs; stretches - head & neck position - starting to unravel her & later assisted weight bearing work commenced
- Neuro occupational therapist engaged - trained residential staff in some enabling techniques in self care, holding sponge to wash face, choosing clothes, self feeding etc. Sourced adapted vehicle & power assist wheelchair to facilitate community engagement
- Recruitment of a carer to work with Sophie in the home, drive her vehicle & provide the link upon discharge home
- Contributed to identification & adaptation of the accomodation
- Stressed the importance of accomodation design to facilitate some social separation for both parties & to limit the intrusion for Sophie's mother
- Assessed & sourced specialist equipment - rise and fall bath, ceiling & portable hoist, relaxing chair
- Further recruitment drive to complete a team of 5 full time carers with mum involved at all times
Stage 3 - Somewhere to Live
- Sophie moved to her house with her mother and care team in April 2002. (9 years post injury)
- Integrated into a quiet residential area within easy reach of good services for both Sophie & her mother. Also easily accessible for care staff to attend for work
Stage 3 - Someone to Care
- Keeping a Care team - most problematic area to manage
- Initial carer & team leader recruited whilst accomodated in Leonard Cheshire Home. Initially very successful but blurred the boundaries of being friendly to being a friend which was not acceptable to mum. After much effort to repair relationships her employment ultimately ceased
Some Fall by the Wayside
- Folding towels
- Drying things on radiator
- Looking out the window
- Putting coffee in cup 10 mins before drink due
- Helping Sophie into bed 2 minutes before the agreed time - everything had to be exact!
- Not living up to mum's expectations
- Multiple complaints became the norm but the overriding problems were clearly not about the actual issues raised.
- Complaints were driven by mum's anxiety of care staff looking after her daughter when she was not present. If they did not follow explicit instruction on how she required simple domestic tasks to be performed, what did they do or not do when she was not present?
- Over the 11 year period of case management repeated recruitment has been the most time consuming & difficult area to manage
- Our records list a total of 27 Carers recruited & 22 dismissed over the years
Time to Get Better
- Long term slow stream rehabilitation
- Physiotherapy - Long term programme of 6 weeks intensive intervention with small goals set & the care team trained to carry out daily work. 12 weeks with no formal physiotherapy intervention attending & the care team working on goals set. Physiotherapist reviewed & set further goals depending on progress.
- Physiotherapy intervention continues today - Sophie can now stand independently for a few minutes and is able to walk a few steps, aiming
at 4 times per day. Limitations on functional capability imposed by remaining contractures of all 4 limbs, hands & head position
- Occupational therapy, set goals for the team for self care. Sophie now participates in washing herself, chooses her clothes & is able to drink from her cup & eat finger food.
- Neuropsychology - 2 separate intervention phases. Sophie was repeatedly asking the time & for her leg bag to be emptied. Initial thoughts were to treat this as a behaviour & ignore it but later was identified as being anxiety related & team advised to provide much reassurance when responding. The problem is now much reduced
- Slow stream rehabilitation carried out over the 11 year period with small goals set by therapists & carried out by skilled support team.
- Regular reviews at multi-professional team meetings to monitor problems & progress
- Provided a cost effective long term rehabilitation programme & much improved health for Sophie
Something to Do
- Gym membership - Sophie goes to the gym on a weekly basis as part of her physical rehabilitation & maintenance programme
- Goes out for coffee & lunch with her family & carers
- Attending & hosting parties for friends & family. Recently celebrated her 40th birthday with a 70's themed event. She dressed up wearing a bright pink wig!
- Sophie enjoys attending music festivals & concerts and met Ronan Keating (lifetime ambition achieved). She also enjoys attending the Dancing on Ice tours.
- Holidays with carers & family. Last year's holiday in south west Wales Sophie said it was the best week of her life
What Did We Learn?
- That the relationship between the case manager and client/family is of primary importance for successful long term case management
- The importance of the finance deputy being part of the team
- How to change - both in terms of adapting to family specific requirements & adapting to legislation requirements such as CQC
What Did Sophie & Her Mother Teach Us?
- That early positioning to prevent contractures is vital for recovery outcome
- Never to give up on a client's ability to recover
- Long term rehabilitation is essential - improvements of emotional, physical and functional status can be made years after the initial injury leading to improved health & life expectancy
- Housing design - very important
- Family education & inclusion is vital
- Teams do settle for some periods
- Families do make some adjustment to long term intrusion of support
- Compromise is always on the agenda
- The teenage years do come to a conclusion!