Equipment and services that are supposed to make life easier.
The past couple of weeks our lives have been hindered by equipment or services that are supposed to make life easier.
With regards to equipment, my daughter collected her new wheelchair this week. The face to face service was good, the therapist took her time getting to know my daughter and observing her propelling around the room. She even listened to us parents, and trusted us with the allan key to make minor adjustments, if they were needed. My issue is not with the service, but with the equipment. We need height adjustable handles, this in itself is OK, but the design of the new chair means that the release button for the handles is hidden under the fabric of the backrest and so virtually impossible to press to move the handles. It’s hard for us, so handing this over to school and PA is going to potentially cause problems. The chair also has a tension bar linking the two push handles. The bar has to be loosened from one side prior to closing, but the bar is then left dangling, we have already slightly bent in trying to put the wheelchair in the car. I wonder how long it will be before it breaks and we are requesting a replacement. I cannot help but feel that these designs were not really thought through for ease of use, but more as an ‘add on’ to an existing design.
Now for the real stress causer of the month. My daughter’s direct payments were originally agreed for a 26 week period only and were then to be reviewed. I contacted her social worker 9 weeks before the payments were due to stop. He thanked me for reminding him that the time was nearly up, he asked a few questions and then said he would complete the paperwork for panel. I met him at a meeting for my daughter and asked the outcome from panel as I hadn’t heard from him, this is with 5 weeks to go until the deadline. He said he thought he had submitted the papers, but now wasn’t so sure, so my daughter had not been to panel at all. We met 2 weeks later at another meeting, where he informed me that in the time between filling in the form and now, the actual procedure had changed and he had to start again. I reminded him of the fast approaching deadline, he reassured me all would be ‘sorted’ and my daughter would be going to panel that week. I received the payment invoice from the LA for the month and there was only 3 hours of money paid into the pre paid account. I rang the social worker, who informed me that panel had been cancelled, and would meet the following week. I told him of the lack of funds going into the account, he again assured me that all would be OK and that any money would be back dated, as I pointed out that doesn’t help me pay the PA this month. So I have used reserves to pay her and not made a commitment for dates this coming month until I have received confirmation of the panel outcome. Time is tight, as LA closes for 2 weeks for Christmas the day after the panel meeting. This is an example of how services are supposed to be making life easier and better for my daughter and our family and has instead caused stress and anxiety, and I feel I am constantly chasing the social worker to do his job. I know social services are under resourced, with a high rate of sickness in the team and difficulty in maintaining an experienced team, but this oversight has caused so much anxiety for us as a family. I shall be calling him first thing tomorrow to find out what has happened, and then relax and enjoy the festive season.
I wonder sometimes if equipment manufacturers, social services, health services, equipment services realise the impact their design or actions have on us as users or customers of their service or product. Isn’t life challenging enough for those in contact with such services??