My deep apologies to everyone for this post but I think it’s going to be a long one. Partly about PA and partly on NHS attitudes I am encountering about the worth of life. Warning for sensitive members, this post might be shocking.
So you will know me through my posts regarding seizures and both neurological services and haematological services being unaware of PA neurological complications. As with my discovery by accident that B3 improved my health, another accident that vitamin d fixed severe bone pain, and more recently yet another accidental discovery that calcium halts my tetany seizures in their tracks it’s pretty clear that when PA guidelines are not followed complications arise. I have news about calcium and PA which I will discuss below at the end.
So unfortunately my father was taken recently taken into hospital as an emergency in early April. One of those nightmares of long ambulance waits, 3 days in A&E wait for a bed. When finally given a bed a 7 day wait for a treatment that was necessary to stop anaemia worst affects on breathing-brain etc. and then sudden discharge arranged. Nurses whispering about inappropriate discharge and a porter refusing to help with the discharge as well. I had to step in and speak to a bed manager about it who said they needed the bed as there’s sick people needing it. I retorted my father had equal right to health care because he still wasn’t well. The penny dropped for me (even with PA brain fog) that life does not matter any more in NHS but the statistics do so that they don’t have people waiting for beds in this case. I spent the next week believing (and even sometimes now) that perhaps I should stop asking for help for seizures , PA complications etc. even at my relative young age because my life has no worth, nor my father’s nor anyone who has the misfortune of stepping into an NHS facilities.
Sure enough my father was readmitted with a serious complication escalated to urgent emergency surgery. Surgery was postponed and he was moved to another ward. Lost the notes and no doctor cover since all surgery teams refused to accept my father as their patient. Kept on clear fluids off and on for the past few weeks and losing weight super fast and finally rescheduled for emergency surgery this morning. Waiting all day and while listening to handover to the night shift discovered a DNR was issued without family involvement. My father’s on powerful pain medication so just shrugs when asked if he agrees. Older patients in the same unit have not been given an DNR. So a second shock on worth of life and not involved.
Over the weeks while this was happening I discovered that my GP had previously said he would run a Parathyroid test to rule out or in calcium problems caused by the parathyroid only to discover on the results (which I had to obtain) that it had been cancelled as ‘not crucial’. They were in fact the entire point of the tests. I decided enough was enough and registered with a new GP who is now asking for new PA tests to prove that I need b12 despite long neurological complications. I suppose I wasn’t entirely surprised but explained that b12 was crucial for dna. She was surprised and something seemed to sink in although I don’t hold out much hope. I walked out thinking that the NHS is now a danger to health.
To come back to calcium. I discovered that PA can cause more than B12 deficiency when gastritis and low stomach acid starts. A number of deficiencies can happen. In my case I have long term pleural pain and falling egfr. It may be possible that these things are combining to cause alkaline ph in blood leading to tetany seizures. A thing I think PA patients should be aware of. Having said that I also now have neck pain and permanently hard lymph nodes in my neck so nothing is certain. Only thing is I don’t want to tell my GP while my father is still facing major surgery and still feel that life has no worth in the N.hS.
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RoseFlowerDew
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We have spoken before. If I remember correct you have APs the same as I.
I am so sorry to read about your fathers abysmal treatment on the NHS. I have experienced the lack of care myself and just like your father spent hours (11) on a trolly in a corridoor with heart failure. When I eventually got onto a ward instead of a cardiac ward I was put on gastro ?
We are just numbers on a long list and as we age the care simply isn't there anymore and turfed out of our hospital beds to make way for another. The stress your going through with your father will be taking its toll on your health. It is of no surprise they loose notes when your passed from one to another. I lost count of how many drs I spoke to and due to a pending endoscopy they spotted in my notes was the reason they stuck me on a gastro ward ! You cant even resolve a complaint these days because your pushed through Pals and then onto an ombudsman. The NHS is finished and now putting patients lives at risk. I feel as you do and no longer have any faith in my Gp or hospital care.
Interesting about the improvement of your tetany and as for the swollen glands I have them too. I am sick of battling with ignorant consultants and Gps. It is dificult enough getting them to understand APs let alone our B12 deficeincy despite our autoimmune conditions. I feel your frustration which upsets me because so many of us have experienced the same.
Take care of not only yourself but that dear old dad of yours. 😘 💐
sadly I feel it’s true, my mum was discharged from hospital in March 2021 on a Saturday at 2am. They bundled her into a taxi and sent her home with no care package in place, Monday morning she rang an ambulance as she was feeling so unwell they re admitted her and she died later that day. On her own, none of us children were contacted to tell us she was back in hospital. My older sister was working in the same hospital that day but didn’t know mum was back in. She also had a DNR on her notes that none of us had agreed to not even mum they just told her that’s what would happen. We were not allowed to view her body at the undertakers we had a retched funeral with none of her friends present. We went to a service station afterwards as no wake was allowed and sat outside in the rain nursing a cup of coffee in shock! That shock has not yet gone away ….
I read of so many appalling and sad stories on here and not surprised your still greiving. Such a sad end to a beloved family member. I didn't think a DNR was aloud to be put in place without discussion ! My friend was in hospital recently, she has MS and was taken in with a urine infection. Her family were told she was end of life, she is now home ? I am beginning to feel it is legalised murder.
I think covid changed the rules on DNR’s I still remember my mum ringing me in tears as she was told if anything happen they would not attempt resuscitation. She was very frightened and on her own as we were not allowed to visit her in hospital. She had been in and out over the last year. But both my sisters work in the hospital as does 3 nieces so they did sneak in and see her, but not on the day she died as we didn’t know! It was very traumatic for us all knowing she was on her own, as we know she would have been terrified.
There are many similar stories which are not only unredeamable but rudy unforgivable. I am finding it hard not to swear as your story tugs at my heart strings. Big hugs hunny.
thank you for sharing. I’m so sorry to hear what’s been happening with yourself and your father and totally agree with your concerns and conclusions. It’s a country wide problem within the NHS, due to long term underfunding so our medical services don’t function correctly. The frontline staff are run ragged. I’m not sure what we can do except call out bad practices and complain to PALS about it. It’s hard to have the extra energy when you’re ill or a loved one. I stand with you in solidarity and send a big hug.
Really, the NHS is not underfunded, it is badly managed and the waste is unbelievable, no government has ever reduced funding, sadly it is a black hole which no amount of money can fix. It has long been a political weapon clearly demonstrated by the current very damaging strikes by staff who are not under paid. It needs to be scrapped because it can't be fixed and people are suffering because of the poor standard of care and supposed professionals. They still do some things well but for the most part they fail frequently.
I totally agree with you. Historically NHS staff wages have been low but they have a very good pension. If they want high wages their pensions should be reduced to pay for it. You can't have your cake and eat it.
I am really sorry to hear what you are going through . Yes I agree with you that the NHS is unfit for purpose . There is no need for you to apologise at all . It’s good that you come on to the forum , and tell us what’s happened . We hear shocking things on this forum every day. I see that yet another member has had B12 injections stopped just because of blood results ! ( the gross ignorance defies belief)
I can’t begin to think how the dreadful situation can be remedied . Doctors better trained would be a start .But that won’t help the elderly . How does the rest of Europe manage ? We certainly wouldn’t want the American system ……..
I’m shocked to hear how many doctors are taking early retirement, and shocked again because the reason is financial ( tax)and not being “burned out “ which was first given as the reason .
I do hope that the situation for you and your Dad improves. RoseFlowerDew. I wish that I had some practical advice . SleepyBunny has lots of links that you can use , if you feel up to complaining to the “Powers that be” .
You know where you can come and unburden yourself . I hope it helps , if only a smidgen , to come on the forum . Very best wishes for you and your Dad .
A big thank you to everyone for listening. Wedgewood I wanted to pick up on your point about injections stopped. My new GP wants to rerun the tests and said almost in the same breath ‘I won’t stop your injections now but in 6 months time’. I had to explain that I quickly develop incontinence, walking and speech issues. So not only has my father been manipulated into a situation of denying possibility of recovery by putting him clear liquid diet for the majority of the previous two weeks, the NHS is also denying nutrition to PA patients. It’s stunningly clear that I have multiple deficiencies which I manage on my own because I can and do but in effect the GPs are issuing blanket implicit DNR to PA patients. It’s medical manslaughter only in the community rather than a hospital setting.
Might also be worth starting a symptoms diary if you haven't started one as could be useful evidence of deterioration in symptoms over time to show GP.
hi Sleepybunny, I know that you can write but my appointment with a new GP was just after the sudden discharge last month and sudden readmission. Because I have been struggling for 10 years for guidelines to be followed and treatment to be in line with neurological complications this last appointment made me almost give up. She seemed very intelligent and if she’s diligent she’ll recognise the stupidity of her approach on her own. If not then I was planning a private appointment regarding the acid base and gastritis issues which may confirm the need for b12. Sadly it is draining my savings looking after my father as he lives at the other end of the country.
I wanted to thank everyone for the kind wishes. An update….My father is just about to pull through from surgery except the weight loss is so severe a TPN line has been given along with a possible small bowel lymphoma question hanging in the air. Ironically it has links to h plyori(?) stuff which I know is mentioned occasionally on the forum. I’m currently trying to advocate for and help my father through this because the ward staff just aren’t noticing things (not their fault they are kind but are losing cover). Patients all around are developing complications because apparent basic things aren’t noticed (drips falling out, patients getting cold, not fed or washed, never seeing the same doctors who don’t properly give handovers of important information). I would almost say anyone going into hospital as an in patient should find someone to sit by as an advocate and stand in auxiliary nurse even if it’s a paid carer to keep an eye out.
What a sad story. The NHS is a joke. Especially for those of us who are older. They don't seem to care about us. My mum was dying in hospital due to their negligence and all they wanted to do was cover their asses by getting us to fill out a patient satisfaction form. BTW It was supposed to be filled out by her but she was in a coma. I couldn't believe their cheek. Of course she wasn't satisfied.
I am very sorry to hear what you and your father are going through and what you've been through with your family. Being from the US it is very scary to read some of the things that you guys write about the NHS. You guys know more than the US does about all of this and if we follow you it's very scary to know that things could get even worse than they are already here in the US.
For 11 months now I've been trying to figure out why the B12 treatments that I'm on are not helping the pain in my feet and my hands and really my whole body. I feel like I am too old for anybody to care about me and I'm only 61. I see the difference in the way people are treating me. It doesn't help to be old and have rare complicated medical conditions. That puts us in a category far away from everybody else. They're not going to deal with a complicated medical history of diseases that they have no idea how to treat on top of the fact that somebody's older. They just don't have time for us. And we don't seem important. It's very very sad. But I'm still going to fight because I have the right to be here just like any healthy person does. Most of us have been fighting for our lives our whole lives. And in 60 years or more nobody's listen to a lot of us and now that we're old I don't think we have credibility with doctors because of our age. Yet we should know more than anybody. It's really remarkable when I read these posts how medically trained we have all become because of our condition. We know more than our own doctors do yet they won't listen to us. Don't know where the disconnect is with B12 deficiency and treatment. Let alone when you have hypothyroidism on top of it and other conditions like you have and your father. I'm really sorry that this is happening to you and too many of us. We have nowhere to turn and it just isn't fair. It also seems the larger the city you live in the worst your medical care is. There's just too many people for them to care about there's a shortage of doctors because of the pandemic. Nurses and doctors and medical people are burned out not that that's any excuse, but it's like a perfect storm. Three years of a pandemic, greed from pharmaceutical companies, doctors with egos, it's almost impossible to get the care we need.
I wish you and your dad the best. I sure hope his surgery goes well and that you get the care that you need. I'm worried that you're delaying your own care for your father's care. It's terrible that you're put in that position. But you have to care for yourself just as much as you care for your dad. Or you won't be there to care for him. It's like putting the mask on in an airplane You're supposed to put it on yourself first and then you put it on the children. So you need to take care of yourself. Because YOU DO MATTER!! Sending hugs. Keep fighting.
god this has made some sad reading today my heart breaks for everyone and yes I think we’ve come to the end of use by date as far as the nhs is concerned it’s tragic.
I don’t know what to say that would be helpful because we are all in the same boat these days,I’m sat here worrying that I’m going to go blind like my mum but they won’t even look at wether I deserve an appointment with a consultant then I know that’ll get dragged out to massage the numbers as pointed out here. My husband hasn’t had his annual echogram for three years now just eventually managed to get an appointment for the end of October ,bloody October I want to scream at them.
Im so so sorry everyone and I wish you all well and as said previously use this as a platform to vent because we really all do need something. Best wishes xxx
We are all here for you and your dad. My heart goes out to all those who have shared their painful stories via this forum.
Looking forward I think we will need to walk two paths from now on - our own self help and wellbeing path and the limited “complementary” input from the NHS (I use the term in the context of what we can usefully obtain rather than what we need).
I realise I need to choose my battles now in the context of a broken NHS as I am tired of fighting and I am finding that realisation in itself is giving me relief from the stress I was feeling. The value of our lives has not changed but the resources to value that life are dwindling and that is the shift we must deal with.
This forum has an incredibly important role in all our futures. I shall be eternally grateful for the knowledge and generosity of thoughts that are so freely shared here because even had the NHS been up to scratch it would struggle to come second place to this forum.
I often reflect on this Apache Blessing as it helps me when I feel frightened and overwhelmed by what is happening in society and in the world. I hope you don’t mind if I share as it’s given me strength over the years:
May the sun bring you new energy by day
May the moon softly restore you by night
May the rain wash away your worries
May the breeze blow new strength into your being
May you walk gently through the world and know it’s beauty all the days of your life - Apache Blessing
Hugs to all I feel so blessed to be surrounded by your kindness - you are my breeze! 🤗🤗🤗🤗
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