Claire Jones

• “Lateral scissoring” can irritate a misaligned pubic symphasis.• Many activities create lateral scissoring motion, e.g. walking,

running, climbing hills and stairs, carrying shopping or children unevenly.

• Photo credit:

The Pubic

Symphasis

“Volition, habituation and performance capacity are maintained and changed through what one does and what one thinks and feels about doing” p.27

“A shift in volition, habituation, performance capacity or the environment can alter the overall dynamics, leading to the emergence of something new” p.28

Keilhofner, G. (2008) Model of Human Occupation, 4th

ed.

Volition• Driven personality

• High pain threshold

• Pride in Joint breadwinner role

Habituation• Very busy lifestyle

• Long hours on feet

• Used to running/ lifting/

carrying

Environment:• Housing-

Steep hill with no vehicle access

Carrying shopping up the hill

Often carrying toddler up the hill

Steep stairs in back-to-back housing

House on three floors

• Work- Very busy M H Inpatient

Ward

Poor advice from GP and Midwife• outdated with reference to published research about PGP,

• services under re-organisation led to use of locums without specialist expertise,

• administrative and communication problems,

• my pride- perhaps I didn’t state my case forcefully enough?

Good advice from Doctor at work • recognised the problems with my gait and insisted I pursue the physio.

referral, despite several unsuccessful attempts

Finally, advice from Physio• Physio couldn’t believe I was still working with the level of injury

Started OT on Wheels blog http://otonwheels.wordpress.com/2010/06/26/so-what-happened-to-you-anyway-why-you-in-that-chair/

“Occupational deprivation is...a state in which a person ...(is) unable to do what is necessary and meaningful in their lives due to external restrictions.

It is a state in which the opportunity to perform those occupations that have social, cultural and personal relevance is rendered difficult if not impossible.”

(Whiteford, 2000)

•Side lying with knees

gripping pillow is most

comfortable position

•It is surprisingly difficult

to do things in this

position!

•Started to use

painkillers and

mindfulness to deal with

pain

Using services gave me valuable insight into the service user experience- things don’t always go the way we think they should!

Took delivery of a bed-stick, two urinal bottles from OT- at last I can get out of bed independently!

Blogged about attitudes of the staff and services I encountered, including Patient Transport

If I can’t work the system, what hope has anybody?

http://otonwheels.wordpress.com/2010/06/30/disabled-people-arent-allowed-to-be-parents-btw/

http://otonwheels.wordpress.com/2010/06/27/a-few-examples-of-how-disabled-people-are-treated/

http://otonwheels.wordpress.com/2011/04/29/patient-transport-again/

DLA- Disability Living Allowance• Benefit in the UK for people to address the increased

cost of living with disability• Very difficult process to claim, but necessary as a

gatekeeper to other disability serviceshttp://otonwheels.wordpress.com/2011/02/14/valentines-day-my-dla-story-ombh/http://otonwheels.wordpress.com/2011/04/22/still-waiting-to-be-awarded-dla/http://otonwheels.wordpress.com/2011/04/22/i-finally-won-my-dla-tribunal/http://otonwheels.wordpress.com/2011/04/23/higher-rate-mobility-dla-it-means-freedom-i-hope/

Motability• Scheme in UK where part of DLA is sacrificed to

provide independent transporthttp://otonwheels.wordpress.com/2011/05/16/all-aboard-the-motability-scheme-renault-review/http://otonwheels.wordpress.com/2011/05/22/motability-scheme-citroen-c4-grand-picasso-review/

Cried each night before going back up the stairs- it hurt so much

Despairing about the future

Hoping that after the birth I would recover quickly

Blogged about problems in the home http://otonwheels.wordpress.com/2010/06/26/whats-the-access-to-my-house-like-rubbish-and-heres-too-much-information-about-how-it-is-in-

the-house-too/

Successful elective c-section

Celebration shared through Social Media-#clairesbaby is born!

Baby develops anaemia within first few hours of birth- soon becomes critically ill

What is it?• Haemolysis leads to elevated bilirubin levels. After

delivery, bilirubin is no longer cleared (via the placenta) from the neonate's blood

Symptoms• Jaundice increase within 24 hours after birth.

Treatment is• Phototherapy• Exchange blood transfusion

http://en.wikipedia.org/wiki/Hemolytic_disease_of_the_newborn

#clairesbaby Tweets became huge source of support

Agreed treatment:

• Triple phototherapy

• Fed baby expressed milk under phototherapy lamps

So happy she was going

to make it!!

Allowed to resume

breastfeeding

And to pick her up for

cuddles

Looking after baby from my

bed- all dressing, nappy

changing and feeding done

in the same way.

Bathing baby in hospital

breastfeeding room-

partner needed to carry

filled bath to table in order

for me to participate in

bathing

PROBLEM SOLUTION

Couldn’t open

heavy fire doors

from wheelchair-

need access for

• Meals

• Toilet

• Shower

Make friends with the

housekeepers, who

brought me meals and

tea!

Plan loo visits during

visiting hours when

many people around to

hold doors

Have daily shower

when I have my own

visitors

Handy grab Toilet frameUrinals (downstairs

and bedroom) Bath seat Shower seat Perching stool

(bathroom) Bedstick Trolley Zimmer Frame

I want to go home, but

don’t know how I’ll

manage!

Home Care helped to: Carry baby downstairs PADL

• Showering• Dressing bottom half• Emptying urinals

DADL• Hoovering• Pegging out washing• Making a cup of tea• Ironing• Making bed• Washing up

Blogs http://otonwheels.wordpress.com/2011/0

1/23/the-woman-who-would-not-take-off-her-shoes-in-which-i-discuss-my-disappointment-with-home-carers-lack-of-respect/

http://otonwheels.wordpress.com/2011/01/23/social-care-the-forgotten-public-service-in-which-i-discuss-the-lack-of-education-of-the-role-of-the-helping-professions-in-our-primary-schools-at-key-stage-1/

http://otonwheels.wordpress.com/2011/09/23/a-funny-story-about-psychosis-in-which-i-discuss-occams-razor/

http://otonwheels.wordpress.com/2011/01/23/social-care-the-forgotten-public-service-in-which-i-discuss-the-lack-of-education-of-the-role-of-the-helping-professions-in-our-primary-schools-at-key-stage-1/

Still in pain, but healing from the birth now

Still find side lying to be best relief from pain

Parenting tasks very difficult- Nappy changing Couldn’t carry baby Couldn’t bathe baby Couldn’t use oven

My set-up each

morning- reducing

trips up and down

stairs- keep

everything handy!

Receiving services- not providing services!

• Daily Home Care

• Family aide 3x weekly

• Social Services transport

• Wheelchair Taxi http://otonwheels.wordpress.com/2011/02/28/

going-out-maybe-or-maybe-not-in-which-i-discuss-problems-booking-out-the-wheelchair-taxi-service/

http://otonwheels.wordpress.com/2011/04/22/access-to-my-house-from-car/

• Physiotherapy• Perinatal Mental Health

Support• GP• Pharmacy delivery

Found online support networks to be invaluable

Couldn’t get out to meet friends

Couldn’t get to schoolHousebound, except

when partner / wheelchair taxi took me for medical appts

Kubler-Ross

Cycle of grief

Denial-Anger-Bargaining-Grief-Acceptance

http://otonwheels.wordpress.com/2011/01/23/life-changing-injury-in-which-i-start-using-the-kubler-ross-stages-of-grief-model/

http://otonwheels.wordpress.com/2011/06/02/feeling-rotten-sucks/

Impact on friendships:

http://otonwheels.wordpress.com/2011/09/19/so-good-to-see-you-back-on-your-feet-again-in-which-i-discuss-the-well-meaning-but-misinformed-friend/

http://otonwheels.wordpress.com/2011/02/14/a-little-knowledge-is-a-dangerous-thing-in-which-i-discuss-medical-student-syndrome/

Starting to accept my situation- assessing how I lived my life before and after disability

I didn’t miss my daughter’s

Nativity- first Family outing!

Spiritualityhttp://otonwheels.wordpress.com/2011/09/24/

faith-and-healing-in-which-i-discuss-faith-healing-prayer-and-christianity/

Familyhttp://otonwheels.wordpress.com/2011/03/13/

a-weekend-away/http://otonwheels.wordpress.com/2011/05/15/

childcare/http://otonwheels.wordpress.com/2011/05/17/

childcare-2-time-to-start-letting-go/

Fit for work?

http://otonwheels.wordpress.com/2011/04/29/fit-for-work/ http://otonwheels.wordpress.com/2011/06/09/telecommuting/

Personalisation

http://otonwheels.wordpress.com/2011/04/23/a-tale-of-personalisation-in-adult-social-care-personal-budgets-and-how-i-still-cant-access-them/

Disablism

http://otonwheels.wordpress.com/2011/09/17/disabled-or-just-lazy-scroungers-in-which-i-discuss-the-home-care-ladys-disablism/

Pelvic Instability Network Scotland• http://www.pelvicinstability.org.uk/pregnancy.asp

Pelvic Partnership• http://www.pelvicpartnership.org.uk/

Wikipedia• http://en.wikipedia.org/wiki/Pelvic_girdle_pain

Kielhofner, G. (2008). Model of Human Occupation (4th ed.) Lippincott Williams and Wilkins. Baltimore.

Kübler-Ross, E. (1969) On Death and Dying, Routledge. Cited on Wikipedia. Accessed 17.35 25/10/11

[http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model]

Whiteford, G. E. (2000). Occupational deprivation: Global challenges in the new millennium. British Journal of Occupational Therapy, 63(5), 200–204.

Haemolytic Disease of the Newborn. Wikipedia. Accessed 15.05 07/09/11

[ http://en.wikipedia.org/wiki/Hemolytic_disease_of_the_newborn]

Nhs local (2011)Women with pelvic girdle pain left in agony unnecessarily. Thursday 31st March. Accessed 15.05 07/09/11

[http://nhslocal.nhs.uk/story/women-pelvic-girdle-pain-left-agony-unnecessarily]

Contact details can be instantly

uploaded to your phone by

scanning the QR code

opposite.

E: tech4health@gmail.com

Blogs:

Claireot.wordpress.com

Otonwheels.wordpress.com

T: @claireot

G: +claireot