Here we go again.......

[Nackapan]

My G.p practice hax been taken over.

Was expecting a review.

Today went for usual IM b12 injection

Different nurse (permanent staff) from Gp 'group'

Flustered. Looked at notes.

Not me .

Had been waiting and should be done before you go in.

Said she couldn't do injection as not 3 months.

I said okay I'll do it at home.

Very flustered .

Have I been trained.

No it was refused.

It went on like this and she didn't listen.

Didn't believe my b12 frequency .

I repeated No worries I will do it at home.

She wanted to speak to a doctor.

I waited outside. freezing as in s t shirt for a 'quick ' injection ' I'm anc out

Nearly left for home 3 times as so.long . ( 4omins)

Gp partner arrived.

Not willing to take responsibility for current treatment without a neurologists say so.

It's in writing on my notes from a neurologist.

He was aware of this but it didn't state for how long !!

Give him his due he listened I covered.

No other cause found.

Treating in the patients best interests off label

PAS Society

Forum with problems of alot of anxiety and problem with getting b12 treatment

Underground statistics as patients have to self inject to keep well because of sheer lack of training.

PAS have information for medics

Overdosing not a problem

I'm not prepared to get more ill go backwards for him to justify my treatment

Have symptom charts when i tried to reduce frequency

Have tried b12 tablets ,sprays to no avail.

Anyway despite having the opportunity to say all of this face to face with a senior partner I'd never met before.

Asked him to speak to my Gp. ( salariex)

Feel upset and angry like we all have time and time again

Glad I didn't go home . Nearly did.

Said my piece but have to wait for a neurologists who has never met me to either condone present frequency or stop it .

Nice guidelines were quoted

I didn't realise how much I was able to quote back.

Really held 'our' ground .

Bottom line though the Gp partner hatnt the ......to take responsibility for a treatment without s neurologists backup

No respect for him.

Went to leave and the nurse said I can give you an injection today ????

so over sn hour on arriving had it.

Stress !!! i pointed out so unescessary to put me through.

Unfortunately the neurologists that I saw a few times and wrote that letter has since died.

A rare one that had B12 definitely himself and could not fit the NHS regime!

Out of 3 I saw.

So s lottery who this Gp gets advice from

I pointed that out too.

Hope everyone having a calmer day.

.

[Sleepybunny]

Hi,

I'm so sorry to hear you're having problems accessing NHS treatment.

I sometimes think if the B12 deficiency doesn't get us then the stress of dealing with uneducated health professionals might.

[Readdaily in reply to Sleepybunny]

I second that!!!!! Outrageous and such unfair treatment.

[Hidden]

I'd liked to press the like button, but sorry I cant. I do not understand there stance. Perhaps you could locate the information from the Netherlands? Where thier treatment is every other day for two years.I am sorry for you nackapan, the stress and constant arguments with the medical profession must be driving you up the wall.

At least you have the ability to self inject.

Sometimes it just too much to get doctors on your side and work at improving your health.

Chin up !

[Welsh15 in reply to Hidden]

You don't need to have to keep fighting your corner!! I am frustrated on your behalf. Well done for sticking with it. Take care. X

[Sunshine1932 in reply to Hidden]

Wow that's refreshing to know. Every other day???? No wonder my nerve pain is not improving. Thanks a million for sharing as it puts some perspective for me and I shall adopt this regime straight away. Cheers

[Narwhal10]

Hi Nackapan,

I’m so sorry to hear. The stress of going through all that as well as the illness.

I hope you do manage to relax from all the BS, if not today then .soon. Well

done on remembering facts and figures.

THANK YOU you for fighting our corner.

Best wishes

[Vonnie-72]

Unbelievable! I despair of how were treated by the medical professionals sometimes. Sorry you had to go through this. It just shouldn’t of happened!

[Nackapan]

Thank-you for all replies.I've written to my Gp who originally diagnosed me in 2018.

Very cathartic.

Took if to the surgery as post very dlow at present .

Asked for it yo go to that named G.p.

She's seen me ah my worst and got everything moving eventually.

She promised my treatment wouldn't stop.

All I've requested is she speaks with thus Partner Gp .

I've discovered there are six partners!

Four salaried.

My Gp . Not named Gp that's

stopped but one i see/ stay with mainly.

She is salaried.

Less clout .

The letter is scanned onto my notes which has airways been the case.

However the named doctor doesn't get to read it first ??

Much easier read on paper !

You then you have to ring.....yawn last time wax number 16.!!

To simply bring the scanned letter yo the doctors attention??

They call that progress.

So there's no point on addressing it to a named it seems.

Only the cleric gets to read it first.

So no way will she get that before the gp I saw todneurologist.a neurologist.

Unbelievable.

I will continue with this process as I'm quite frankly not willing to be treated like this .

Better than I was last time i had to fight .

Much better position wittha box under the stairs of b12 ampoules and needles

Fortunately just got the NHS prescription .

[Sleepybunny in reply to Nackapan]

Have you thought about sending a copy of the letter to the practice manager?

[Nackapan in reply to Sleepybunny]

Thanks. I will be sending her another but waiting for outcome first. This letter was to try and get GPS to discuss my case . New partner and My gp who eventually decided to prescribe 2 weekly injections mostly done at home.

Not so good at links .

Will go through your links .1 Tkort Dutch info on not being able to overdose

2 British society haematology on not testing levels once on injections

3 off label prescribing

Weary at present .

Hopefully brain in gear tomorrow

[clivealive Forum Support]

😢

[GalDriver]

Wow, what a day you've had! How very upsetting too. So unnecessary. I told my MS nurse that I self-inject and that I take cannabis fudge (home-made) when pain get's too much. She was surprised, almost judgemental (but I gave her "the look" that I inherited from my Dad) then intrigued and asked me loads of questions. Good luck with your situation. It's not your GP's place, nor your neurologists, to tell you what you can or cannot do. They can advise but it's YOUR life.

[Nackapan in reply to GalDriver]

Yes you are very right. Why meddle with treatment that's the only thing giving some relief. Apart from pain killers. .

I will see what happens and how else they intend to treat the many symptoms I still have

K have Bern moving forward at a snails pace .

I'm certainly not going backwards

Very wearing and very disappointing.

Thanks for your reply.

Hope b12 is helping you

[Sunshine1932]

Sorry to hear.I am in a new surgery and they out my 10 weeks back to 12 weeks. They where even willing to stop my b12 because I said one jab every 12 weeks is not enough so I do my own at home. For God's sake do not take me off the 12 weeks as you will think I'm completely fine.

This whole telephone system of now seeing your GP is horrendous. The Dr just prescribes pills and says get on with life.

So, rather than get stressed I just upped my jabs and I'm grateful they are cheap enough to do so and that we can buy them online.

My gut says that we will be able to buy ampoules in this country soon and not due to out GPS understanding, quite the opposite. I feel a lot of us will be wiped off and asked to buy our own like normal vitamins to save surgery's spending necessary. I could be wrong but that's the feeling I get.

Please try not to stress because we have a solution and that's standing in our power and buying what we need.

Much love ❤

[Nackapan in reply to Sunshine1932]

Yes I think you are right.I'm stubborn and after working in the NHS fir 36yrsrs dismayed at what's happening.

I know principles can wear you down.

I've fight in me and won't let things go.

Was a good trait in work as an advocate but I get what you say.

Thank you

I have my own supplies.

Really want it yo be on my notes the need fir frequent b12 Injections .

Incase something happens to me and the notes needed.

[Sleepybunny in reply to Sunshine1932]

"My gut says that we will be able to buy ampoules in this country soon"

I really hope so.

Petition to get injectable B12 available over the counter in UK

change.org/p/dr-june-raine-...

Tracy Witty of B12 Deficiency Info has been campaigning to get B12 available over the counter in UK

b12deficiency.info/category...

[Emsworthy]

You know, I don't bother with my GP regarding B12 anymore. I am happily self injecting at home to keep myself alive. All my GP does is 'allow' me to have a vial of Hydroxocobalamin on repeat prescription every 3 months. Four times a year is what they feel is sufficient. I don't even go in for the injections anymore, the vials are in the bag with my other medication from the pharmacy, so I self inject that, too. If it weren't so serious, it would be laughable.

[Nackapan in reply to Emsworthy]

Yes it needs addressing. Needs research.

I totally get its the the way yo ho as disputes are not good for anyone.

I have my own supplies otherwise would be distraught.

I will pursue this though

My brain is waking up

I am able to write more

I'm too tenacious at times but fir me letting go very hard and can give me stress in a different way.

Injustices festering

Thank you

Glad you've found a way

[MePo in reply to Emsworthy]

If you don't go in for the 3 monthly jabs they may stop prescribing , haven't you been asked why you don't book a jab 🤔

[Soulquest]

I simply cannot understand why the healthcare system insists on discrediting the reality of this disease. It’s crazy-making. I’m sorry for your grief.

[Nackapan in reply to Soulquest]

It's Lack of training and research. Would save billions if it better diagnosed and understood

Nice guidelines are guidelines they can prescrubd off licence and do with many many 'heavy' drugs.

Doctors seem note worried about being being sued ect nod abd have less 'botyke ' with individual case prescribing out of the box.

You end up being sent in circles.

Listening skills ate being list.

Clinical skills being lost

Without face to face or continuity of care its impossible as every time you are supposed to start from the beginning .impossible.

Medics too stressed .

Systems broken.

An simple example yesterday.

I was told by the nurse to book a doctors telephone appt before leaving to be informed or his decision.

Receptionist said not possible.

The nurse or doctor cxn only book telephone appointments.

The nurse couldn't do it . The doctor had gone.

So have to ring and queue 🙄 to book an appointment the day they are in with no guarantee of getting onf.

I actually asked his I would know outline he blanked!!

So much time and energy wasted

No memory used.

Communication appalling

[Midnight_Voice]

Nackapan - much sympathy, and kudos for still fighting the good fight. Like Emsworthy we have given it up, and just SI at the frequency we feel we need - 4 weekly, sometimes 3 weekly.

But we have a vague feeling of guilt, because every sub rosa SI is a missed statistic for the NHS, one that could have told them that their two to three months’ guidelines just aren’t working - while on the surface it looks like they are.

Our GP knows we SI though, and it’s a relief for her, because she doesn’t have to fight the system on our behalf to get our frequency on the NHS - a battle which seems to win the doctor and the practice no brownie points, in fact quite the reverse.

Maybe we should all send in the schedule of shots we have actually had, every three or six months, and get them recorded in our notes? Then, at least, the evidence that two to three months isn’t enough would start piling up, on the record.

[Nackapan in reply to Midnight_Voice]

Good idea. Would it be noted nd coated though or just filed.

I'm going to pick a few trips NHS doctors brains as a way forward.

Unfortunately rather have it embedded 3 monthly fits all.

It's knowing how to navigate te system without putting up backs otherwise strong brick walls appear

Despite the ridiculous reassurance from s neurologist this gp wanted updated.(only 18m old letter and neurologists can't update as has died) He did listen .

Will see .

Also will try again to source the late neurologists medical notes on me.

Last attempt failed.

He was at the top if his game sbd respected.

Only have 2 letters written to gp

Last one advising 2 weekly b12 injections to continue .

Also asking to allow me to self inject sc at home .

My go refused initially but then rang out of the blue as stood up to her peers. I hadcto take responsibility for snt harm injecting .

[Sleepybunny in reply to Nackapan]

"Also will try again to source the late neurologists medical notes on me."

How long ago were the notes written?

Retention of UK medical records

bma.org.uk/advice-and-suppo...

[Nackapan in reply to Sleepybunny]

That neurologist I paid yo see . After his quite sudden sad death I left it a decent period then asked gof my notes. The secretary trued but soon after his widos stopped all contact.

Not sure if same rules?

Last consult was by phone. 2020.

Have z copy of that letter.

Previously 2 face to face. 2019

[Hidden]

Gosh Nackapan how awful for you to have to fight so hard to try and stay well! I admire you so much but I can see it is so stressful for you and upsetting. Try and have a relaxing weekend and do something nice, you so deserve it . Best wishes xx

[Nackapan in reply to Hidden]

Thank-you. You too.

[Hedgehogs15]

It’s so unfair the way you were treated. It’s like having a B12 deficiency is a sort of stigma. All we want is our rightful injections to feel ok [ not even on top form] to get on with our daily lives. I fought for 6 years to get my injections back after a stupid young doctor said pernicious anaemia goes away.I really hope the stress hasn’t made you too I’ll and hope all will be resolved.

Even with all your problems you still find time to look after us all. Very best wishes x

[MePo]

I just wanted to send my support 🤗 My husband & I were saying last night that it's a shame all the 'mental torture', because that's what it feels like to me, can't be Seen by the faceless people causing it. I've been quiet on here as girding my loins & energies for mesh removal surgery on 20/1 - which has just now been cancelled for 4th time 😭 We need an honestly committed caring 'Tzar'🤔 to sort the nhs out. I do recall a well respected businessman making a programme 'inside' the nhs a few years ago, with lots of recommendations on how to improve things, it obviously fell on deaf ears! I live in different area to where my operation is booked, there is a booking system in place to arrange out of area pre-op CV Swabs (ICE), my area trust uses it, the trust where I'm having my op doesn't so can't access the swab results........

[Nackapan in reply to MePo]

Yes problems problems I took s cd of my brain MRI after organising your get it .

Very impressed with the radiologist dept at out local hospital.

Took your s long awaited appointment (1im wait) top neurology Hospital our of ares as referred to a Neuro ophthalmologist who requested it.

On my appointment I had z crude eye test in a 'cupboard '

No equipment g your vies mri scans

I could go on. A waste of time.

I sat outside demoralised

Then saw so many ill people snapped out of it.

I really hope your next date not cancelled i wish you well

Thanks for reply

[Cherylclaire Forum Support]

Hey Nackapan !

You are so right about continuity - you have been very ill, very obviously ill, and any GP who has seen you regularly (....back when that was a thing !) will have noticed a good few of your symptoms in the same way that your colleagues, friends and family do.

It would be almost impossible to know where to start now with a "newbie" over the phone (especially knowing that that in itself will cause you some symptoms). It cannot streamline the process of reinstating your treatment at an effective frequency and any delays will as you already know be detrimental to progress.

What is very evident to all of us who have followed your story with interest is that you have worked really hard over a long period to regain your health, with little real medical support beyond an acknowledgement that your case is complex. Far too complex for a telephone call.

You have certainly made improvements. Because of the length of time this has taken, it may not always be clear to you but it is to us. Your innate stubbornness is your best friend, but there are plenty more friends here that you can count on if you need support.

Stress can suck up all that fresh B12 - although good that you managed to get your points across in a face-to-face with new practice partner.

While there is often a completely unwarranted "fear of overdose" within the medical profession regarding B12, I believe that in your case there may also be "fear of deterioration".....

Well, good. So now they know how we all feel !

Why else would anyone order B12 online and teach themselves how to self-inject it ?

(Please don't let anyone mistake this for "addiction" )

Good to be back. Wishing you every success !

[Nackapan in reply to Cherylclaire]

Good to have you back! So right relient but not addicted !

Thank you for your kind words.

'Innate stubbornness '

Made me laugh.

I've said the very same to my daughter and mother

Often in frustration when trying to help them... but it does see them through difficult times.

Never thought of ME being stubborn . Ha

[Cherylclaire Forum Support in reply to Nackapan]

Family trait that has probably has helped you over the years to secure better healthcare for both. Now time to do it for yourself !(I remember for years thinking of myself as "easygoing" - causing sisters to howl with laughter!)

[Hidden in reply to Nackapan]

Stubborn

(You visibly feel anger, frustration and impatience when others try to persuade you if something/someone you don't agree with.)

Go go go girl !

[Nackapan]

As u understand it Yes. Partners own the business.

Definitely have more clout how business is run .

Some invest in it and their earnings vary.

Salaried have a constant wage .

I'm

Sure it's more complicated but that's my basic understanding

[jaybirdxNHM]

GPr practices are private businesses.They then take on NHS patients. The NHS pays them to give certain treatments. Some treatments get cancelled by GPs , eg ear syringing, so one now has to go privately for simple ear syringing, Specsavers charge £35 let ear or £70 for both.

NHS dental treatment is similar. But, NHS only now does the very basic quality of things like caps, dentures, fillings etc. My dentist keeps me informed!

[Blake55]

Hi, my wife has similar problems and in can relate. So here is a soothing floral image.

After listening to all you have endured a the hands of this heartless system focus on >

[Nackapan in reply to Blake55]

What a beautiful shade . Thank you