Living is a full time job

Life is a full time job when you have an impairment. Last week spent hours of surfing to research how to make a claim for hospital travel expenses. Also gathering photocopies of proof for benefits people wanted.

Monday was taken up by meeting with care agency.

Tuesday involved a trip to the Royal Brompton to stay over.

Wednesday we waited 2 hours to get a doctors signature and walked two blocks to get my travel expenses claim turned down and came home.

Thursday was a blur but I went back on the net to understand the claims system.

Friday the District Nurse and an OT visited with a supplier of bed positioning supports to demo. The afternoon was spent shuffling around the bed. Royal Brompton doc calls twice with some ideas to improve my ventilation.

Saturday night – day two of bed support trial. Agency send a letter saying they refuse to help me. Spend the day in disappointment. Start formulating ‘operation find a PA’.

Sunday – hubs packed up bed supports and put back the usual bedding – not suitable.

This week

Monday – hunt out paper work, passport photo and fill out a form and apply for a cinema card so my PA gets in free. Write advert for a PA and work out pay scales.

Tuesday – bed research and e- mail to hospital.

Wednesday – Researched and wrote a 4 page justification report to beg the NHS to get me a hospital bed. The bed support people arrive 45 mins early to pick up the bed supports I tried. Registered to put my PA job on- line.

Thursday – that’s today. Wrote job description, updated my on-line website with the job details, inputted the job details on the KCC job website for social care… twice because it timed out the first time. Mailed application pack to support service. Got PA to cut out adverts and put one up in the post office. Sent of one pack to an applicant.

… I’m supposed to be retired!! Zzzzzzzz

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