SACD

Well what can I say !

My partner who was diagnosed with B12 deficiency 4/5 years ago told to take multi vitamins .. change to b12 tablets.

December 2021 called ambulance, they refused to take him

" they said he was in too much pain to move him and the six to 8 hour wait in the ambulance at the hospital wouldn't help "

Got appointment next day at surgery, doctor told him to lay down, he could lay properly and explained he couldn't without severe pain. Questioned about b12, told it was ok in october, yet he hadn't had bloods test. I pointed this out to them (doctors not looking at date ) . Anyway eventually got one injection December and he slept for three days and I have injected him since..

He has been in real pain so phoned 111. After waiting over 10 hours they phoned back cant get hold of doctor!

Told physio... went private but he couldn't get up the stairs to clinic.? So been waiting 5 months for a nurse to phone for triage assessment .

Asked to go private .... REFUSED request told he had to follow procedure and have x ray first.

Phoned surgery .... now revealed he has curvature of spine, disc degeneration etc etc.

Now they said we can go private, but we have to do it ourselves, they will give us a letter !

Well done NHS ! 10 out of 10 Sorry to say I wont be recommending you to anyone!

[Sleepybunny]

Hi,

I am so sorry to read about what your partner has gone through. I do hope he has some pain relief.

Has he been officially diagnosed with SACD?

It might be helpful to access all his medical records to see what has been given as a reason for his spinal problems.

If you are very unhappy and think a complaint is possible at some point, I would recommend you get hold of his medical records as soon as possible.

I knew two people who made official complaints (not B12 related) and both of them felt that information that should have been in their records was not there.

My impression from listening to those who have made complaints is that health professionals sometimes close ranks when a complaint is possible.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

BMA article on accessing medical records (16 pages in PDF)

bma.org.uk/media/1868/bma-a...

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

A search for "SACD B12 deficiency" showed links to many research articles on SACD.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

If he has got a SACD diagnosis then I think both Martyn Hooper of PAS and Tracy Witty of B12 Deficiency Info might be interested in his story.

PAS Contact details

pernicious-anaemia-society....

B12 Deficiency Info

b12deficiency.info/

[Hidden in reply to Sleepybunny]

Unfortunately I have been there before with complaints,Where we go from here I have yet to work out, will have to definitely go private as he really needs MRI scan and go from there !

[Narwhal10]

Oh my goodness Sallyannl,

I am so, so sorry to read and at present I’m too gobsmacked to comment.

Unfortunately, closing ranks is common but I feel strongly that leaving someone in acute pain is not acceptable.

Thinking of you both

[Hidden in reply to Narwhal10]

Thanks we will sort it one way or another, in one way I am glad he didn't go to hospital as all but one are pretty much hit and miss, the only one that has the compassion is a small one that treat people as humans, far nicer nurses etc, unfortunately they are for minor things. If I could only find the right pain relief he needs. He went to bed 6.30 at the moment asleep so hoping he will get a better night.The doctor (a lady doctor) was far better today, and kept apologising for delays . It's the NHS at the moment.

[Narwhal10 in reply to Hidden]

Let’s hope your husband does have a better night and adequate pain relief soon. Please keep us updated and feel free to emotionally off load as it must be tough on you. X

[Hidden]

It wasn't the best of nights, but seems calmer this morning, he just can't get comfortable with the shooting pains and burning sensation. Told him to stay in bed if he is comfortable. It all brings back memories of my mum.15 years of nursing her , at least men can go to wee in a pot ! One saving grace.

NHS need educating doctors !

[Narwhal10 in reply to Hidden]

Good your husband is calmer but horrible that he is unable to get comfortable.

Your poor mum and that must have been very difficult for you caring for such a long time. Emotionally and physically. People don’t understand the role of the unpaid carer until it happens to them.

[Hidden in reply to Narwhal10]

While looking after mum she was admitted to the local hospital for respite care. I got a phone call from the sister in charge telling me not to go in as I was responsible for her depression..... I was far from happy and told them a few home truths. Got to the hospital and they met me and repeated the same thing! I told them it wasn't me making her depressed it was the fact that not one person has actually sat down with her and explained to her what is wrong with her ! Next morning went in and the doctor was sat on her bed talking to her..... he said he didn't know how to treat her or anything about her condition !Ha ha what a waste of time he knew nothing even though he had been her doctor for years !

Funnily enough years later they said the same thing to me ..... "I dont know anything about b12 deficiency"

It's a good job we have the internet !

[Narwhal10 in reply to Hidden]

I’m so sorry, ‘You were responsible for her depression’. 😤 Illness per se causes depression because you cannot do the physical things you want to do, like wash, dress, cook for yourself. Good you gave the sister in charge some food for thought.

Well, Doctor, to keep your registration you have to re-apply every few years. You have to provide evidence that you are continually learning by way of teaching, attend multi disciplinary meetings, symposiums, lectures, read, evaluate and carry out research. Some of you get published. So, maybe how about sparing half an hour to learn about PA/vitamin B12 deficiency.

Yes, thank goodness we have access to books, the PA Society and internet.

[Hidden in reply to Narwhal10]

As we all know doctors blame everybody else for there own lack of knowledge. If they couldn't see what was wrong with her (lymphodema for one) they they should of gone to spec savers 🙄

[pitney]

So sorry to read your post Sallyanni hope your partners scan goes well and that you start getting some help soon

[Hidden in reply to pitney]

Thanks for your reply, yes am waiting for surgery to let me know what specialist ... neuro or back specialist.