Care Experiences: - Ramsays Disease
Care Experiences
Applied for care assessment in February 2015 (after struggling-on myself for 3.5 years, exhausting my savings and using-up a loan to supply some basic help).
In April/May I recieved assessment visits with kind response and promises made by the commissioning caseworker, yet so far little has materialised except for a home visit by lovely, help OT to supply some equipment.
Too long a wait, when in true need.
I was festering for a long time til friends stepped in with some exceptional heartfelt support (though still not enough to meet the need)
I could see this flowing faster if there was much closer integration between medical and health&social care- for example if the hospital OT or GP would help guide and facilitate the process, rather than leaving the patient to struggle, under-supported when very unwell.
Clearly resources are stretched to breaking point (the council's... and my own and I imagine there's an administrative process going on, but not visible to me)
Financial concerns coupled with limbo waiting for needed help on top of an already tough experience healthwise exacerbates the condition and adds to a challenging life situation for someone who usually loves to contribute and who is usually self-sufficient and unused to asking for help. Hoping and trusting this will resolve soon in the early Autumn, though that may be wishful thinking.
A constant challenge avoiding returning into limbo a new strength for our self sufficiency hold onto wishful thinking RockRose hoping helps fill dreams.
Thank you for such care and heartening encouragement, which feels supportive and so much appreciated, Seascape...and I guess this cultivates even more resilience, they say it is 'the grit that grows the pearl'...
Loosing a sense of personal identity inside a disjointed system producing a minimum of support and incapable of fluctuating with a long term disease in between a rock and a hard place with responsibility for care passed around.
One more dark cloud on the horizon is the care agency's warning that meeting the living wage will close companies providing care.
No experience of care.