As I have said previously, the reality of my daughter being away at residential special college and how I naively thought they would be, seem to be poles apart. The trouble isn’t being caused by her being unsettled, unhappy, asking to come home or the care, support and education at college. It’s the DWP, LA and Health Authority that are the thorns in my side, which have lead to me spending several hours waiting on the phone, chasing forms, writing emails and generally creating stress and anxiety, much of which I feel could have been avoided.
I contacted DWP the day after my daughter moved to college, notifying them of a change of circumstance, they reassured me this had been recorded, and as promised I received a form a couple of weeks later to complete for the days she is home. I checked the bank account a couple of weeks ago to discover the payments had not been adjusted. After being on hold for 35 minutes I spoke to an adviser, a form had to be sent to college and returned before the changes could be updated, in the meantime, her PIP payments have been suspended to prevent further overpayments. As requested college informed when the form had been completed and returned to DWP. I called them again this week (another 25 minutes on hold), to be told there was a 2-3 week delay in the post being uploaded on to their system and so there was no change in the status of her PIP. Now we are in a fortunate position, in that my daughter is not being impacted by this delay financially, but I am pretty sure that there are many people who would be. The multiple options when contacting DWP were lengthy and confusing, so not easy to navigate and the wait for an adviser was lengthy. If my daughter had had to make that call, even with support she would not have been able to, and would have lost interest long before speaking to any one. It certainly made me think about what would happen in the future if my daughter, or any one else with support needs needed to contact DWP, the system seems weighted against callers, not enabling them.
I have finally had a response and satisfactory outcome from Direct Payments, and am no longer receiving payments. This of course took additional emails and phone calls to resolve the issue.
My final hurdle to overcome was regarding a routine outpatient appointment for my daughter at a local hospital. I initially received a date that was for the first week of term, I phoned and rearranged it, but not for a date best suitable because they could only offer a date 6 weeks in advance of the current one, I took this thinking we would change it again. I called up for this purpose to be told that as the appointment had been rearranged once they were unable to change it again, and so if my daughter failed to attend this one she would be discharged from the service. I explained the situation and was told ’sorry, but that is hospital policy’. After a few minutes of pacing the house, swearing a little, and asking ‘where are the reasonable adjustments here?’ I decided to circumvent the appointment system. I emailed the Learning Disability nurse at the hospital, who we had met at a previous meeting, outlined the situation and asked for her help. She was my knight in shining armour who spoke to the consultant’s secretary and had a new appointment sent out in the post for a date that was in college holidays. So a positive outcome in the end. I still received a text reminder for the cancelled appointment and found myself on Monday afternoon talking to the appointments line explaining the new date and why this one may not have been cancelled, another 45 minutes in a queue, to be told that a ‘special’ note would have to be added otherwise the threatened discharge could still occur. As I haven’t heard anything yet, I’m assuming the note worked. Again, I found myself thinking about what will happen when I am no longer advocating for my daughter, will there be times when she is unfairly discharged from a service because reasonable adjustments have failed to be made. As we know there is no real definition of what a reasonable adjustment is, but I’m pretty sure we would expect an NHS service to be flexible in it’s systems to accommodate those that are in need and require assistance or understanding when accessing such services.
On a real positive note, when my daughter came home for half term, we had a really good time, just being together and ‘hanging out’ . She has already changed, is more independent, physically stronger and developing her own ways of doing things. I must admit to feeling one proud mum.