Late covid: My health centre is the... - Pernicious Anaemi...

Pernicious Anaemia Society

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Late covid

3rdNettydoon profile image
9 Replies

My health centre is the same one that my parents used and took me and my siblings to. I am 76 years old. The building and street locations have changed and of course the doctors too but we in our town have always considered the present building to be our local, first port of call when we or our own children feel unwell.

I am struggling so much with being excluded from the care of this trusted sanctuary by two different doctors within two weeks regarding my B12d and PA.

Yes I told them I was self injecting.

Yes I said I could not risk my health by stopping SI.

But I stand by my decision to do this.

There is a history of pernicious anemia in my family and many family members, my son, cousins, great cousins, great nieces and school friends have been diagnosed with B12d. In my mind I think if I deny my SI and doctors think I'm well enough on what they want us all to survive on, there could be less likelihood of them being given adequate treatment.

I'm in a quandary now because I hate feeling 'on my own' with this thing. B12d. I don't want to keep things from them. But neither do I want to feel unwell when it can be put right.

I have relied on this practice so much for so long.

Surely they should have a feeling of loyalty and commitment to me too.

Hope it's OK to post this.

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3rdNettydoon profile image
3rdNettydoon
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9 Replies
jade_s profile image
jade_s

Perhaps you can send them some brochures from the PAS? The for-professionals section of the site pernicious-anaemia-society....

Martyn Hooper's books?

Well done for sticking up for yourself and by proxy for others. I'm sorry it's been so frustrating and disappointing x

jade_s profile image
jade_s in reply tojade_s

Also random thought, perhaps you can look up the hospitals in your areas. Some UK hospitals/clinics now have websites on self-injecting, perhaps if you show them that, they'll calm down.

eastwoodprimarycarecentre.n...

gretnasurgery.scot.nhs.uk/h...

3rdNettydoon profile image
3rdNettydoon in reply tojade_s

Thank you jade_s. I will hand this link in. X

Sleepybunny profile image
Sleepybunny

Hi,

Some of them might be interested in Club B12.

This is a group of researchers and doctors worldwide who are looking into B12.

It was started by a UK doctor who had personal knowledge of B12 deficiency.

They have regular zoom meetings and a conference in UK in September 2023.

Maybe some would like to join Club B12.

club-12.org/

jointpain profile image
jointpain

Telling my doctor that my grandmother mother and father had all been diagnosed with Pernicious Anemia, and though I passed their tests with very low serum B12 after I had been using b12 sublingual tablets and liquid sprays, my own health care virtually stopped through the GP. I've changed doctor surgery but as they are all in a group and know each other I don't hold out any hope of ever getting B12 from them. I have to inject every four days.

3rdNettydoon profile image
3rdNettydoon in reply tojointpain

Quite wide spread isn't it. It is sadly eroding the trust we have had in our GPs.

Cherylclaire profile image
CherylclaireForum Support in reply tojointpain

I have found that, in my local surgery, there are a wide spread of GPs with a variety of approaches and beliefs. Sadly, the three that I had the most faith in have all left and now work in hospitals. Which says something, doesn't it ? That the very best of them are also disillusioned with the route that primary care has chosen to take, post-Covid.

It is worth being persistent. Nackapan tried I think six GPs within her previous surgery before finding one that was more supportive.

I also felt that nothing would change, unless I was totally honest with everyone involved in my care or affected by my condition: GPs, consultants, friends, family, employers and work colleagues. You soon find out who is in your team !

Luckily for me, my (then) GP was excellent - but I once had occasion to have to see another GP while she was on holiday, something that could not wait - and he managed to get my NHS injections stopped almost immediately, and certainly before she returned from holiday. I was informed by letter about the decision made in a surgery meeting : that unless I stopped self injecting, my NHS injections would stop.

I did not bother to reply to him, but discussed it with my usual GP on her return. She had not been made aware of this action, but assured me that nothing would change: I would not get the 1 injection a month that I had been told was for life, but would still get all the same care; continued monitoring, testing (except B12 of course) and referrals.

And she was right - nothing really did change, until she left along with my second-choice GP and my third-choice GP. Guess who stayed ?

So now I've just stopped as I really can't summon up the energy to go over the past seven years with another GP, one whose opinion I will have to guage for myself, just for a few blood tests that may or may not happen. Not even sure that I would build up any real rapport over the phone - or be able to request a particular GP now.

So I place my trust in my own judgement and that of my family. Any blood tests have since been carried out by secondary care - my Oral medicine consultants have been very helpful in that - but know this will end eventually.

3rdNettydoon - I still believe that you were right to be honest, that the world doesn't change without truth and glad you posted this.

Now perhaps it is time for GPs and consultants with B12 deficiency themselves to be as brave - and admit when they have also had to ignore the established regime as being inadequate to their needs and resort to self injecting. Not an easy decision to make for anyone. See brenanddave 's post today.

Nackapan profile image
Nackapan

I dont see loyalty or commitment .My mum has been at the same surgery since 1959.

Makes no difference sadly.

Thd 'groups ' have the same Gps over ? 5 surgeries here .

All have different I.t systems if seems .

Now all to get an appointment have to fill out s form online .

Then seemingly triage snc said all over again.

Then if you ard chosen to be actually seem ard sent to which evef surgery has a slot.

Most people choose surgeries that they can physically get to.when 🤒 ill??

My husband chose one that stated does diabetic clinics.

But no atrip to the hospital needed. ??

I got s blood paper form from the nurse

Tried to book ag reception in person as there.

No.

Have to book online.

What are receptionists doing now. ??

It's all frustrating.

My mum certainly won't be doing anything online.

The most vulnerable cannot seem to access a doctor 😕

3rdNettydoon profile image
3rdNettydoon in reply toNackapan

Can't imagine what they're thinking about. This should be a choice allowing those familiar with IT to book online but over the phone or in person if that is preferred. This take it or leave it could be life threatening to many sick people. How much more impersonal can it get. I also think that lots of patients will bypass the surgeries and go directly to A and E, thus the overload hospitals are struggling with.

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