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Fresh Mud

A blog about living with FSH muscular dystrophy. Questions?

Entry 35 of 41

One-to-one time

Sometime in 2016 I had the idea of asking my funders for some one-to-one time each week so that I could go out under my own steam rather than rely on my family and friends. I found the appropriate address and sent a letter, but received no reply. I sent another letter, this time with support from one of the therapy team here at The Dean. After sending another letter and more than a few emails I was very frustrated at getting zero response, not even a “No.”

In the meantime, I had a review that resulted in my funding being cut (mentioned in this entry) and having to pay towards my care myself. When one of the ladies from The Dean's finance department came to talk to me about my first bill, she mentioned that my funders had granted me three hours of one-to-one time per week. Apparently they had been receiving my letters and/or emails but couldn't be bothered to respond and, seemingly, only decided I was worthy of having any time when I was paying for it myself. I was incensed.

Once the one-to-one time started, things went well for a while. One of the HCAs whom I knew quite well came in on her day off every Wednesday morning and we would go out for three hours; we went to the cinema, the coffee shop, I visited my niece, and sometimes we just went shopping. It was great until, one day, the management at The Dean decided that HCAs were no longer allowed to drive resident's cars. Suddenly, I was limited to either getting a taxi, which was out of the question for cost reasons, or visiting places within walking distance; this was either the pub next door or the coffee shop 15 minutes walk away.

Things carried on like this for a while, ie. alternating between the pub and coffee shop, but then continued staffing issues saw me missing out. There were weeks where a carer was booked to spend time with me, but, when the time came, no one was available and my one-to-one time was cancelled. This steadily got worse and worse until I brought it up at my next review; when I mentioned it, the lady conducting the review said she would contact the Dean to discuss it. The next I heard about it, the operations manager asked me to provide her with the total hours I had missed during the previous 12 months. When I checked my calendar I noted that, out of 52 weeks, I had a missed 32; time that I had believed was “saved up.” I heard nothing more until a fortnight later when I asked, on a day where there were plenty of staff, if I could have someone for three hours. I waited for around 45 minutes for a decision until the operations manager informed me that I was in fact no longer entitled to any one-to-one time. It turned out that my funders had claimed back all the payments for the cancelled time and then revoked my entitlement; neither my funders nor the management at The Dean saw fit to inform me. I was, once again, incensed.

Earlier this year I was moved to different funders and, during my first meeting, I asked about getting my one-to-one time back. I also asked that, if they awarded me the time, could they also look into bringing an outside care agency in to avoid a repeat of The Dean's staffing issues; the lady at the meeting promised to look into it. Less than three weeks later she emailed me to say that I had been awarded three hours per week “in principle” and that she was looking for an outside agency as I had requested. About four weeks after that I got a phone call from Bluebird Care telling me that they would be covering my one-to-one time; I was elated!

A lady from Bluebird came to meet me and discuss my needs and requirements. She informed me that they were currently suffering IT issues and therefore it would be a couple of weeks until my first one-to-one time could take place; I really didn't mind. I received an email from her three days ago to let me know that I would be meeting my first carer, Adam, in two days. I am so looking forward to it.