Support (or lack of it) in all it's guises
I hear a lot from people whose friends have abandoned them once a diagnosis of dementia enters their lives, who are left to muddle through as best they can, whose families argue amongst themselves over the best way to deal with the situation and whose acquaintances can't see a problem. Everyone's situation is different however and as far as we're concerned we've been very lucky. Jake came on that initial course with me and so we sing from the same hymn sheet and he is always there if I need him while friends have been extraordinarily supportive with invitations to events, short breaks and suppers most definitely not in short supply. Not only that but there is always a plan in place to make sure Ash can cope with whatever social situation we're in which means he's relaxed when we go to anything as he doesn't find any of them difficult. If he doesn't want to go for whatever reason (usually because there will be too many people) I go on my own and everyone understands. This feeling of loyalty from almost everyone we know has, at times, been breathtaking and I really feel that we wouldn't be where we are now without it.
That's the good but then we get to our GP surgery who really should know better. Last year, before dementia was diagnosed, Ash was being treated for anxiety and hypertension which meant regular check-ups. At the beginning of this year, following his diagnosis, the surgery kept phoning and making appointments with him which he promptly forgot about. Not only that but the appointments were made with no thought as to whether I was available to go with him. If he went without me he was not only incredibly nervous but at the end of the visit couldn't remember what had been said. Twice this happened in a very short space of time and each time I phoned to rearrange the appointment, explained that he had dementia and asked them to not only make sure this information was prominent in his notes but in future to make appointments direct with me. Ash had already signed a form to say they could discuss his medical difficulties with me so there really shouldn't have been a problem. Then it happened again and I started to stress so I emailed the surgery in the early hours one day last April to explain the situation and ask that they contact me to make any future appointments and to make sure it was obvious in Ash's notes that he had dementia. I didn't receive a reply but assumed, foolishly it appears, that the matter would be dealt with. Cut to last Friday when I happened to look in the diary and saw that Ash had written an appointment in for 7th January. He had no recollection of the appointment being made and I can't go with him so I phoned to change it and once again explained the situation. The receptionist said that there was 'nothing on the front screen' so they wouldn't have known about the dementia and I pointed out that wasn't my fault. Her response? 'It's not mine either!' I seethed for a while and then emailed the surgery asking for a copy of their complaints procedure. Again they didn't bother replying. I have now looked more closely at their website and it appears that I have to go into the surgery (a round trip of 10 miles) to pick up a complaints pack. I have emailed again asking that they send me an electronic version and am now waiting to see what happens. It seems it's a good thing we don't currently have to rely on the support of the health service as that support is almost non existent and has been since the very beginning.
That's the good but then we get to our GP surgery who really should know better. Last year, before dementia was diagnosed, Ash was being treated for anxiety and hypertension which meant regular check-ups. At the beginning of this year, following his diagnosis, the surgery kept phoning and making appointments with him which he promptly forgot about. Not only that but the appointments were made with no thought as to whether I was available to go with him. If he went without me he was not only incredibly nervous but at the end of the visit couldn't remember what had been said. Twice this happened in a very short space of time and each time I phoned to rearrange the appointment, explained that he had dementia and asked them to not only make sure this information was prominent in his notes but in future to make appointments direct with me. Ash had already signed a form to say they could discuss his medical difficulties with me so there really shouldn't have been a problem. Then it happened again and I started to stress so I emailed the surgery in the early hours one day last April to explain the situation and ask that they contact me to make any future appointments and to make sure it was obvious in Ash's notes that he had dementia. I didn't receive a reply but assumed, foolishly it appears, that the matter would be dealt with. Cut to last Friday when I happened to look in the diary and saw that Ash had written an appointment in for 7th January. He had no recollection of the appointment being made and I can't go with him so I phoned to change it and once again explained the situation. The receptionist said that there was 'nothing on the front screen' so they wouldn't have known about the dementia and I pointed out that wasn't my fault. Her response? 'It's not mine either!' I seethed for a while and then emailed the surgery asking for a copy of their complaints procedure. Again they didn't bother replying. I have now looked more closely at their website and it appears that I have to go into the surgery (a round trip of 10 miles) to pick up a complaints pack. I have emailed again asking that they send me an electronic version and am now waiting to see what happens. It seems it's a good thing we don't currently have to rely on the support of the health service as that support is almost non existent and has been since the very beginning.
Comments