As I have said before my husband has more than just Parkinsons to contend with. We are currently under four different clinics and to be honest it is really hard going. I am not sure if that is just services are over stretched or if they just don’t know what to do to or please excuse me for saying this: he is too damaged to help. That is how I feel at the moment.
I know the NHS is on its knees but I have reached out to our GP for some very basic assistance. All I have asked for is two email addresses. Not asking for anyone to break data protection. Give me access codes to some clandestine secret service operation. Just a means of contact. This has triggered a special GP appointment to discuss. Delaying tactics? We have a month to wait to see him. Maybe my letter wasn’t clear? I just have a few questions to ask the consultants. We don’t have appointment dates so why not send an email. They are as far as I see it; yes/no questions so we can make some plans. Now I should point out this goes back to his stay in hospital at the end of last year for which we are still to see two different clinical consultants.
I can hear you muttering; why not make a phone call? I tried that with one department and couldn’t get to anyone. I also tried with another clinic for which we were asked to make two calls to notify them when we had seen other parties so they could look at the notes/results. So calls I made, messages left as per our instructions. Also made another two calls leaving requests for a call to talk about possible medication side effects. Nothing sinister there. Didn’t hear anything. Radio silence. Tumbleweed as far as the eye could see. During a telephone appointment with a clinical nurse we mentioned this. Oh yes sorry we aren’t dealing with the messages as we are short staffed. What now? So why tell us to leave a message and secondly change the answerphone message so that urgent calls can be made to an alternative department.
Let me get this straight. Can’t have an email address. No point leaving a message as no one will call you back if they even listen to the message and appointments are more sort after than a winning lottery ticket. I am sat here scratching my head thinking what are we supposed to do. Is it any wonder I feel frustrated and to be honest: alone. I am out of ideas where to turn. If I am truly honest if this was for me I would be throwing my hands up and giving up but I can’t do that.
To compound the frustration the letter containing the notes from the telephone consultation. Well what can I say? I must have been on a different call. Nothing we said was in the notes. Assumptions had been made which were incorrect. Its a complete nightmare. Another letter to put them straight. Is this incompetence? Poor training? I am at a loss. Oh I know we were talking Klingon. My bad. Note to self: don’t do that again not everyone is into Star Trek. Husband probably wouldn’t know what I was referring too.
Am I scared? Damn right I am. Am I stressed and upset. Also yes. Its my job to help him but who is supposed to help me? My natural reaction is to scream and shout to get some attention but that won’t achieve anything. I’ll get labelled as a stroppy female who has raging hormones or something along those lines. I have to take a deep breath and be patient but let me assure you that is not easy when the weeks are flying past. In my head I have already written this year off. 2024’s achievement – a big fat zero. Not one step forward have we made. The later half of 2023 was spent on pause waiting for the Parkinsons diagnosis so be damned if I am willing to waste 2025 too. I just need to figure out a way of getting the answers we need. Keep your ears peeled you might hear the fall out from there. E x