My now long suffering wife, had another blood test this morning, and told to go home afterwards and await the results. The results were Hgb 79 platelets 4 yes 4 white cells 25, because she was bleeding within and had BP of less than 100 over 42ish the nurse said she should be admitted, but the ONLY way was through A and E , she is now there waiting to be seen, even though triage saw her within an hour. Meanwhile she is still losing blood and hasn't seen any medical staff at all, and won't until she becomes unconscious. This is modern day Welsh National health service.
Getting admitted to hospital, why is it so blood... - MPN Voice
Getting admitted to hospital, why is it so bloody difficult in Wales?
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jointpain
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hi there. How absolutely terrifying for you both. I do hope that by now she has been admitted fully, and emergency treatment started. Good luck let us know how you get on. Seems like the health services are collapsing around our ears! Bruddery
Oh jointpain - so sorry that you and your wife continue to try and batter your way through the health service - I would have hoped that your wife’s haematology dept would leap into action following an A &E triage! - I hope she is seen soon to get appropriate treatment. Anne-Marie.
The haematology dept has never leapt into action, they only work a four and a half day week, and I suspect that the consultants split that between them. She won't be seen by a doctor that will give her any blood until she's on the floor or the weekend is well and truly over.
That is truly appalling! Definitely time to be very assertive. Hopefully she will be admitted and under care by the time you read this.
Please let us know how things turn out.
Thank you hunter, it's impossible to be assertive when you can't speak to anyone that could do anything to help. Her consultant is off sick, and though he does read his emails , he has only replied to one in the past three months, and that was two days ago. When he asked if she had an appointment at Christies in Manchester yet. I did say she has but that's another month and a half away, and I've only been asking for one for her for 5 years. The other consultants are never around. The A and E do not answer the phone at all. Weekends are a joke when it comes to emergency care.
You may need to contact one of the patient advocacy organizations in your locality for help. I believe that this link will connect you with PALS in Wales.
So sorry to hear you’re having such a worrying experience. Hope your wife is seen very soon.
Me too! I may be arrested tomorrow when I visit and she is still waiting and unfed.
Well, maybe the email to her consultant that is off sick but still has influence got her a bed? After describing how she waited 35 hrs for a bed two years ago. Still no blood for her yet or a visit from a doctor.
WhatsApp dialogue of getting a bed!
This is disgusting. Is there another hospital you can take her to? Would it be any better if you went home and called an ambulance? If not then I would say time to lay her on the floor and shout for help saying she's unconscious. Please keep us updated.
Carol
I’m absolutely disgusted with the NHS it’s virtually gone I’d email your local MP on this fiascos it’s appalling
Email patient liaison to PALs put a complaint in
Hi jointpains husband, Im hoping as it's now morning that's she's receiving blood and has had a consultant assigned to her case!I'm hoping you've got some family with you and you can get the help she needs today.
Maybe get your local Macmillan Nurse involved,Pals etc.
I’m so sorry your wife is suffering from her illness and the breakdown of our NHS. I also would recommend you contact PALS.
I hope she can receive the treatment and care she needs and deserves very quickly. How awful for you to witness this, I know from experience how helpless, angry and afraid you must be feeling
Maggie-ol
Have only just seen this post, but pray that by now this has moved forward and the treatment she needs has been administered. What a truly dire and stressful situation you have faced. I witnessed this with my own father and know how distressing it is. A previous post mentioned PALS , it certainly may be worth going via them as soon as your wife has had the treatment she needs. I hope by now you are in a better situation.
Only just seen this post. It is a horrific situation.
Please contact your MP asap and demand they intervene. Pals should be able to help but they tend to be an after the event group.
I hope by now she is getting some treatment. Is there anyway you can contact the Christie and have her transferred there?
You must be at your wits end, I can’t imagine how people who have nobody to speak for them go on.
What about contacting the press about this, national paper or tv station?
Sending prayers for both of you.
Liz
Well thank you Liz, I've just got through to her, as the hospital's WiFi had been shut down overnight! She's just had her first bag of blood, and had a sandwich at 4am, brought by an actual doctor. She's still in a small room within a and e but happy she has a bed. Though not had any sleep because of the noise. Which is odd as she will sleep all day at home!Her arms are like a battlefield as they can never get the needle into her veins, even though they are plainly visible, so each attempt causes a bleed under the skin.
Thank you all for your replies. All the best.
I have read this late...but am so relieved she is more comfortable.Whilst she is there, as Hunter has previously said, try and get someway forward and search around the hospital to get the contacts for a dedicated ward that is connected to hematology....if they have one of course...details of which you should have given already anyway.
Best wishes
I was born and bred in North Wales, moved away years ago for work. My dad passed away a few years ago, abysmal treatment from the NHS, my mother is now late stage dementia, I visit as often as I can, I live 200 miles away. My partner is a retired senior nurse and she has always said that if I became unwell in North Wales she would drive me to England. Yes it is that bad, my late sister had adenoid cystic carcinoma and they suddenly withdrew her steroids and she went into freefall...
They kept sending new hospital appointments even though she was dead and her medical records were marked as deceased.
Try Googling Betsi Cadwaladr Health Board, there are some real horror stories... Yes Wales has free car parking and free prescriptions but the medical care is truly abysmal.
bbc.co.uk/news/uk-wales-686...
bbc.co.uk/news/articles/c0w...
bbc.co.uk/news/uk-wales-666...
bbc.co.uk/news/articles/cge...
bbc.co.uk/news/uk-wales-677...
bbc.co.uk/news/uk-wales-681...
I'm so sorry to hear about your wife and totally empathise with you. My wife collapsed due to to temperature of 40 degrees. We waited 5 hours for an ambulance and then spent next 8 hours in the back of the ambulance. This isn't the first time this happened. A friend of mine had a heart attack whilst walking a river. I phoned ambulance. Time of arrival will be between 2 and five hours - for a heart attack. Bundled him in the car and took him to hospital in England. Four hours kater emailed me to say stent fitted and all good having his tea. From experience frontline staff are very good, but are stressed out.
Yours is a terrible situation but what is also so sad is the breakdown of the NHS. As a child (in Ireland but with regular visits to our many family in England) we were in awe of how how brilliant and efficient it was. A truly wonderful State institution that worked for both patients and staff. Thinking of you both. Valerie
Totally agree. Hope your wife is feeling better and getting the treatment she needs. In our thoughts and sending you positive energy.
So sorry to hear of you wife's awful treatment, wishing you both well.
what a horror story! I sat in hospital all last weekend as there was nobody available to say I could go home but I have never experienced the sort of problems you talk about through A&E. I lived for a while in North Wales so I’m thanking my lucky stars that I now live in Devon. I am praying that your wife gets the treatment she clearly urgently needs
Good grief! My thoughts are with you both.
Just a bit of an update, my wife has had two bags of RBC leukocyte depleted, and, after a talk with today's doctor, she will be admitted into a ward at some point, and have a bag of blood which will contain platelets, something she is lacking at this time which is why she is bruised and bleeding! This blood is what she should have had yesterday morning, because it contains platelets!I should have been a doctor 😜
Glad to hear that she is finally getting the care she needs. It is appalling that it took so long for care that was so obviously needed. Hope she is feeling better soon.
It's difficult having to teach the front line doctor about myelofibrosis and how it is treated when the hematologist isn't available, and knows very little themselves. So little that their lack of knowledge really caused this drop in platelets and subsequently an acute GI bleed.
I have found it to be quite common to need to educate doctors about MPNs and how they manifest. I am very fortunate to see a MPN Specialist for care planning and also a local hematologist for ongoing care. My local hematologist is not by his own definition a MPN Specialist, but he is an outstanding physician who listens to his patients. He is also more knowldgeable about MPNs than other hematologists I have encountered.
I hope you wife will be able to arrange for higher quality care in the future.
My wife has trouble understanding how a log burner works, nevermind arguing the toss over the rights and wrongs of quality care with the educated elite! She is too trusting in the medics, I've learned not to be.
Well she's still in Acute medical unit short stay, attached to A and E. Her platelets hadn't risen last night so still at 4 her Hgb has dropped but no figures, had a bag of blood in the night which includes platelets. Doing well under the circumstances.
We have a neighbour who's platelets are typically around the 4 mark yet still works a very physical job, doesn't tend to bleed or bruise though, and, though Christies see him now and again they aren't too bothered. My wife, once her bleeding stops, should be fine so long as her Hgb is increased to above 95. The epo blood test she had drawn a couple of weeks ago was lost in transit to the test facility in Cardiff! You couldn't make it up could you!
LoubprvVolunteer
hi JP.
We have a holiday home on Anglesey. ( a lodge) Live in Cumbria.
I went to Bangor hospital A and E during our last visit. I sat for 6 and a half hours then left.
Saw no one. Turns out I had pneumonia.
It’s gets better.
A friend of mine aged 54 lives not far from Bangor, and was diagnosed with stage 4 ovarian cancer. After two years Bangor sent her home to die. Palliative care in their words. She applied privately to guys and st Thomas’s who operated. She is now at home recovering.
Another friend aged 77 ( fit as a flea) was diagnosed Jan 24 with pancreatic cancer.
He too went to Bangor where he was told there was nothing they could do.
He decamped to Leicester where his daughter is an oncologist..
He is on his 8th round of chemo. before an operation to remove his pancreas, spleen and another organ ( I forget) the outlook is good.
We all need hope do we not?
Sadly the nhs has in many parts become not only a postcode lottery but a bank account lottery.
I urge you to pay and seek a second opinion - although I have met 2 people from wales who are patients at the Christie in Manchester, which is the superb hospital I attend.
Sending you both my very best wishes and hope you resolve this ridiculous problem soon.
With love
Louise Cumbria xx
Blood count test need 15- 30 minutes only for the result.
Hope your wife get the treatment she need already.
Good luck
CBC can take a few minutes,! If they have the modern equipment, but here in Wales it now takes at least an hour or much longer. Her Hgb was 90 yesterday after two bags of RBC, her platelets had risen to between 4 and 6 and she had a bag of platelets in the night. Just visited and she's doing well.
Hi there sorry not much difference in N.I. in fact best chance for A&E is Monday to Thursday, Friday and Saturday not a chance, Sunday recovery from previous two days, unblocking the "system". I was stuck with suspected broken neck, stuck outside women's toilets for seven hours! They mean well but it is the system [what system🙄] complete chaos😷😖
I'm so sorry you're going through this, it must be hideous and I imagine very uncomfortable waiting for your wife. Just awful. Unfortunately this isn't a Wales only problem, the only way to be admitted to hospital anywhere in the UK is via A&E or as part of a planned procedure. What is absolutely disgraceful is that she was sent home when her results should have triggered an emergency response. I do hope she has now been admitted and is more comfortable and being cared for 🤞
NHS is gone, it's barely functioning. It needs a total overhaul.Hope your wife is recovering.
Thank you, her acute bleed seems to have subsided, probably due to the transfusion of a bag of platelets and her ability of producing platelets when not taking the Anagrelide and hydroxycarbamide which she hasn't taken for a week now. Another blood test today and probably another blood transfusion of RBC. The CT scan showed up problems with her lungs, heart, pancreas and possibly a new spleen growing. Personally I think these are hematomas/bleeds due to having virtually no platelets, an MRI scan is proposed and an echocardiogram to assess these anomalies. Hopefully she'll be home soon, the washing up is piling 🙄
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