Put Me Through
You all read my article last week about the carers' strike, didn't you? Great. Well one of the things the business caused me to wonder is: what counts as caring? I mean, there's the direct intervention stuff, like sorting out medication and massaging limbs and so on, but there's also the indirect stuff. I spend a certain amount of time doing things she can't do, because she can't lift, or because she is too tired, or because, as I have mentioned before, she has run out of willpower. One of these things is making sometimes endless phonecalls.
The round of calls itself is bad enough. Having navigated my way through the maze of calls to adult social care over the last month or so I am now basking in the eventual success my persistence has reaped. That may have been a slightly jumbled metaphor. This week I am chasing an appointment we should have heard about ages ago for an MRI scan. Today was my nadir in this respect, in that the imaging department's phone produced what felt like a sensory deprivation experiment. First of all they would play some truly horrible tinny electric music at me until just before I was ready to wrench the phone from its socket. Then they made the phone actually ring for three successive rings, then I heard what sounded like a person on the other end, concluding a conversation before speaking into the handset. Then the music started again. I've left three voicemail messages now, with two different departments. On Friday last week I finally got through to a human, but she wouldn't speak to me because of data protection.
I do understand the data protection argument, I really do. I'm just not sure the people who use it do. I understand the idea that they won't discuss my wife's medical details with me, but one of these days I will say, 'Can you explain the Data Protection Act to me, please?' and see if they actually can.
Meanwhile I have a problem. I need to talk to these people, and time in which I get through to them in usually the same as the time my wife isn't here. I can't be the only carer trying to make calls on behalf of somebody else and trying to sort out medical appointments and so on. My wife gave our doctor a letter giving him permission to talk to me about all matters relating to her health. This doesn't seem to have filtered down to the office staff, who are still extremely reluctant to give me any information when I phone and ask for it. How this helps me with the many sundry departments in health and social care I don't know. I can't really ask my wife to write letters to every single of them. What I need is something in the order of a carers' passport.
I don't know if the idea I am about to pitch already exists, but I am happy to cede the credit if that proves to be the case. Basically my idea is that I should be given a card with my name on it which proclaims me to be a carer. It should include the details of the person I care for and of their care needs. Perhaps it should also have attached some sort of password or PIN1 which could be used when identifying the owner over the phone. Then my wife's medical records should include a note to the affect that she has a carer, who has a specified level of access to her medical records (none, if requested by the patient) and whose presence should be expected and acknowledged at appointments. They are a key part of the care team and, where appropriate, they should receive copies of medical correspondence. I already have a ‘someone depends on me' card, which means that if I am found in a car crash, say, someone can ring the attached number and people will dash round to my wife and check that she is okay. The passport should also incorporate that idea.
There are probably more ideas that I haven't thought of. If you have any, please suggest them at the foot of the page or drop them in to Carers of H2G2. Thanks.