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Struggling to care against a backcloth of cuts
Cuts are forcing struggling families to pick up the slack (Click to enlarge)
The following is an account of years of struggle by parents of a disabled child to secure the proper resources to meet their daughter's needs. A situation made more difficult by draconian cuts in funding local services.
Our story by John Morrow
When my daughter was first diagnosed with cancer and a one in ten million neurological disorder side effect, we were told our council house was unsuitable for adaption and exchanged to a house the authorities said was more suitable.
Her condition meant it became dangerous taking her up and down stairs so I contacted Occupational Therapy (OT) to start the adaptations. An OT person came out and took one look at the house and told us "sorry it cannot be adapted you will have to move" (we had spent £2,500 doing it up as it was a dump).
It took two more years to find a suitable house and then five months to adapt. For the first couple of years everything was great.
My daughter was given a bath seat, and a comfy chair. However, no thought was given to her growing out of these aids.
When she became ten her replacement chair would not fit in the lift. We kept her old chair in the lift and swapped chairs to get her upstairs as all lift adaptations were for a five year old.
Rejected
We were still using the same bath chair when she reached 13. An occupational therapist told us we needed an extension for a shower room, which the person put in writing, then denied saying it.
We endured six years of fighting the council for the shower room extension. The application was rejected.
We appealed and lost, then won after going to the ombudsman who said Gateshead council broke the rules in its appeals procedure. A council OT came around with an architect - but there were a series of fitting problems.
Relationships between us and the council became increasingly fraught. I was constantly lied to and started recording conversations, but was banned from doing this. This was extremely stressful.
Even once the work was finished we have had ongoing problems. They fitted a bedpan sluice instead of a sink to wash soiled clothes in. We were told it would be possible to use this, but when we asked for a demonstration of how, the penny dropped that it wasn't possible.
We understand that OTs are at the sharp end of council cutbacks. The situation is exhausting for carers of disabled children/adults. There needs to be a better understanding and more resources available to us.
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