Bedbound with osteoporosis - how to get help?

[Aliensrus]

My mother has severe osteoporosis in her spine. She fell last year and after a stay in hospital went straight into a nursing home as after hospital she could no longer walk and was very confused.

I have been told by the Osteoporosis Society that she should be put on second line meds but she needs to see a rheumatologist for this and she can only be referred after a dexa scan. She waited for the scan for 8 months and then they realised that she couldn’t have it due to her mobility and is back on the waiting list for a scan at a specialist hospital.

In the meantime she is becoming very down in the nursing home and seems to have lost the will to live - she has a miserable life trapped in bed alone most days.

I don’t know what to do to try to get the best outcome for her - should I write to her doctor? Complain to someone? Get an opinion from a private doctor to show to her NHS doctor?

I feel like the NHS is just letting her have a slow agonising death. She is aware of her situation and it is heartbreaking to see.
I’m just worried that I’m failing her and should be doing something but don’t know what.
Does anyone have any experience of anything similar?

I don't know the specifics but I am a bit confused by the mobility issue. How would they normally do a scan? I had to lie flat for the dexa scan, is she able to do that?

what is the likely outcome of the second line meds expected to be?

Both my grandmothers ended up as wheelchair users due to osteoporosis, so it's something .i fret about, but I did think medication needed to be administered early to avoid the bedbound scenario. I may be completely wrong but hopefully this will bump the thread and someone with more knowledge can advise.

I wonder what is meant by second line meds? I may be wrong but I believe that osteoporosis meds can only prevent deterioration and not actually improve bone loss. I take alendronic acid since a dexa scan last year and was advised that if my bone loss doesn't reduce by much it will have worked.
There is a lot of info on the osteoporosis website and I felt they were really helpful when I rang.

Thanks @EmmaAgain22 and @SilverSalver for taking the time to respond.
Re mobility, after she fell and spent a month in hospital she came out unable to use her legs. I pushed for physio but was told there was no hope of it on the NHS. I hired a private physio but she couldn’t do the exercises on her own and her pain is also too much to do much rehab. I did look at a private rehab residential place (would have had to take out a loan to afford it) but the social worker said if we took her out of the social adult care system we would not be able to get her back to a state funded care home. So we have had to give up on regaining use of her legs, she can’t transfer herself to the dexa bed and they didn’t have the facilities to transfer her.

The second line meds are medications other than alendronic acid which are administered by injection or UV if alendronic acid has not been effective. She has had lots more fractures since her first in 2018 so alendronic acid hasn’t helped. Also some of these second line meds can reduce pain (so I understand) and the pain is stopping her from getting into a wheelchair. If she could tolerate a wheelchair she could go outside or sit with the other nursing home residents but as things currently are she has been trapped in bed for 10 months.
I might try the Royal Osteoporosis Society again.

Sorry to hear this
Do they know why she lost use of her legs? How old is she?

I'm wondering if morphine can be used to allow her a transfer to a wheelchair. Or the epidural they sometimes use? I had a spinal injury so I might be way off the mark, just thinking of things that were talked about to me at that time.

My mum is probably going to have some sort of infusion - I think it's Zoledronic acid - but that is more in the hope it might prevent a fracture if she falls again. This might be given after a dexa scan so maybe that counts as second line.

I mean this kindly, but if the best case for your mum is to be a wheelchair user, then is it more a case of finding appropriate pain management?

I'm genuinely surprised that a hospital can't arrange for her to be transferred from a trolley bed to the scan bed, but there's probably a bunch of associated stuff that I'm unaware of.

Hi @EmmaAgain22, apologies for the late reply. I got taken out by shingles and Christmas.

Mum is 75. She lost the use of her legs after spending 6 weeks in bed basically completely out of it due to the infection. A physio did try to get her up after 3 weeks in bed but they expected her just to stand up even though her pain meds had been withdrawn (they had to take her off everything to help them find the source of her infection) and they didn’t provide any walking aids (she needed a zimmer frame before she went to hospital).

I have already argued for morphine when she is moved from a bed to a chair and she got this when last went for a dexa scan (the failed one where she couldn’t move herself from the chair to the dexa scanning bed - I think it was in a community medical centre rather than a proper hospital), but if the nursing home decides to put her in a chair for a bit, she doesn’t get morphine. She is obviously very unhappy in a wheelchair but she won’t tell them she is in pain and just tells me instead. I think she has some communication problems and I don’t know if that is a medical problem or natural old age.

This thread has been really helpful to remind me of the things I have already done to try to help her. It has also made me realise that I need to push harder for actual information from the doctors to understand exactly what is happening to her eg they say there is no dementia but last weekend she was trying to use her lip balm as a remote control so surely there must be something wrong!

anyway thank you @EmmaAgain22 and @SilverSalver for taking the time to respond to me. I wish you all the best for the new year.