"Disjoint, uncommunicative, broken, pathetic"

After 50 years suffering from rheumatoid arthritis, and being mostly ignored recently by specialist departments that once were second to none, my wife ended up needing to be admitted to hospital because of intense pain and greatly reduced mobility. 

In the first 2 – 3 weeks in hospital, good work was done to adjust pain meds to bring her pain back to a manageable level. Not eliminated, just manageable. Results of a full-body MRI a week earlier came back, showing extensive cervical and lumbar vertebral damage, due to osteoporosis, had developed greatly since first being found before 2018 and monitored by annual scans up until COVID-19.

Four weeks after that, seven weeks in total, the clinical care has been pathetic. Repeated requests by my wife for physiotherapy were met with empty promises of daily physio which never happened – probably no more than two or maybe three ten-minute visits a week, and rarely by a physio who had seen her before. I was invited in to be shown how I’d be able to assist my wife in sitting up, mobilising, getting to the loo, getting to bed, but no time could be given, just “afternoon”, so I took the afternoon off work. Around 3:15PM two physios arrived, said “hello” to me, worked together to get my wife up from her chair to a Zimmer, and after less than 10 minutes, went away without speaking to me. This contrasts greatly with a previous very positive experience in 2021.

Repeated requests for referral to ORU were met with comments that she was too young so doesn’t qualify, she hasn’t broken anything so doesn’t qualify, and the incredibly hurtful, she's fallen through the cracks in the system. A brief flirtation with getting a place in the Rosewell Care Home which has extensive physio facilities was finally quashed by both osteo and neuro – she hasn’t seen rheumatology at any time - still with the same “don’t qualify” line. That message came from a visit by a physio staff member in the morning. My wife feels abandoned, betrayed and hurt.

Four weeks ago, the stated plan was to offer physio daily to get my wife able to mobilise with just one person – me – assisting. The plan has now changed to putting a care package in place for four visits a day by two carers, because two people are required to assist her in mobilising, therefore she’ll be stuck wherever the carers leave her after their visit because I can’t assist by myself, and of course I’m terrified that I’d cause greater injury to her spine. That means that she becomes a housebound invalid, who has to get out of bed according to the care schedule, eat according to the care schedule, visit the loo according to the care schedule, and go to bed according to the care schedule, because I can't help alone. No wonder she, and I, feel abandoned and greatly let down by the system. None of the medical staff that has spoken to her has indicated that they don’t think physio rehab would be a good thing, just that she “doesn’t qualify”.

The system is badly broken and we have heard that the only way to get taken seriously is to cause a stink. The system is obviously failing and hurting staff as well as patients, yet the care that nursing staff offer has been excellent, aside from understaffed and overworked weekends.

At this time, I’m sole carer for my mother, who suffers from demential/Alzheimers, and last week had her care package cut from four times a day to just once a day at lunchtime. She can be assisted to have a shower, or have a microwave meal heated, but not both. When my wife finally gets home, I become sole carer for her too. I’ve got a meeting with Aberdeen City’s benefits advisor, then with the care managers for my mother and, hopefully, my wife (I’ve already been told that they’ll be two different people), with a view to giving up work to care for both.

I despair of the medical staff’s lack of empathy and of being unable to see the bigger picture. I despair that “you’ve fallen through the cracks” is a position that any professional in the care sector can take and still sleep at night. I despair that the opportunity to avoid being abandoned and thrown on the scrapheap is not available, apparently because the facility that my wife desperately wants to access is unavailable to her.

I’m in tears.