there was talk this week of needing to push through pain barriers. pain behaviour, boundary setting – tenuous terms that sat there, elbows out, in the discussion.


my husband and i came home from the second meeting with the hospital psychotherapist – shattered, relieved, troubled, wary. we talked. disagreed. argued. made up.

at the heart of this very difficult situation is something we both want dearly and need now to make happen. our daughter has to be able to stand up again without our help. if she could do this, it would break the seemingly vicious circle of dependency she has on us.

a friend called this morning and suggested occupational therapy.

of course.

the NHS has guidance on How to Access Occupational Therapy. they assess needs, provide advice on equipment to improve mobility, and will work with the affected person to help them recover their independence.

it is a moot point as to why the clinical psychology team did not suggest this.

coordinated, joined-up care? the hospital can’t provide that.

it is up to us, my husband and i, to make it happen.

patchwork. piecemeal. here, there, everywhere.

– is this the state of the NHS in the 21stC? or had i set my expectations too high?


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