Lost myself

[Queeniz]

My memory started going bad 2yrs ago now nearly 5yrs untreated I forget how to spell my own name I wanna shout out cos I’ve started feeling as if I’m in Stone & cant get out. I black out at least twice if not more a day I feel awful myself. I’m a shell of who I was 5yrs ago I can sleep 20 hours a day , I feel weak, I’m in pain & so depressed. I hate waking up I only live for my cats x

[wedgewood]

Queeniz please speak to someone on the PAS helpline . You are a member , and you will get advice . I wrote to you this morning giving you details . This could be a first step to you getting treatment and recovering your health. PHONE THEM TOMORROW MORNING. Best wishes .

[Queeniz]

Sorry if I’m upsetting anyone I’ll stop posting x

[wedgewood in reply to Queeniz]

You are not upsetting anyone Qeeniz . It is important that you get some help . The first step is to speak to the PAS helpline . It’s fine for you to tell us how unwell you feel , but you must take action , and do something constructive. Please do phone PAS tomorrow morning between 8–12 . They will do their best for you .

[Nackapan]

Please take advice and get some help. I'm glad you posted.

Let us know you've made that phone call.

[Queeniz]

I’ve been trying to get help but the reason I’m in this state is cos nearly 5yrs ago I had blood tests done and my GP sat and looked me in the face & said “they’ve all come back fine” .... I knew something was wrong then last summer I had to see a new GP I was telling him how bad I felt he said “well I should think so with Pernicious Anemia etc” .... he saw the shock on my face & said “you didn’t know did you?” I said this is first I’ve heard of it but the other GP that lied to my face put on my medical records “ I refused treatment “ why did she do that???

[deniseinmilden in reply to Queeniz]

You are not the only one who has been treated really badly. You have found us now and just need to get some injections.

Please do what you can to get them.

[deniseinmilden in reply to deniseinmilden]

buster_uk can you help with this at all, please?

[Queeniz in reply to deniseinmilden]

Help with what ???

[deniseinmilden in reply to Queeniz]

Sorry that I wasn't clearer.

Help with this situation of you not getting the treatment you needed at the right time.

He has also been treated like this but has recently been able to turn things around and finally is getting the treatment he needs so will be sympathetic and could have some very useful tips to help you.

Good luck with getting things sorted for yourself - I know how impossibly difficult it can seem/be but it is very important and you aren't so alone now.

[wedgewood in reply to Queeniz]

Dont forget to phone PAS this morning . You have the details . Please do this .

[BirdlessBox in reply to Queeniz]

So is the new GP being helpful? If he can see you have had untreated PA for 4 years what is he doing for you?

[Sleepybunny]

Hi,

Please think about calling PAS today.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone] answerphone

You may need to be a member to get support. It costs about £20 for a year's basic membership.

pernicious-anaemia-society....

"put on my medical records “ I refused treatment"

1) GPs have to correct factual inaccuracies in records eg wrong name, wrong date of birth but they do not have to change a diagnosis/opinion just because a patient disagrees. It is possible to ask for a comment to be inserted in medical notes that explains patient disagrees.

pulsetoday.co.uk/news/polit...

gponline.com/amending-medic...

2) Have you considered writing a brief, polite formal letter to GP, possibly copied to practice manager,explaining that you wish to be treated for the PA diagnosed in (insert year) ?

Change GPs

Is there another GP surgery you could go to? Why stay somewhere where you have been lied to?

nhs.uk/common-health-questi...

Advocacy

If you need support to make a complaint then there are advocacy services.

nhs.uk/conditions/social-ca...

CAB (Citzens Advice Bureau) can also offer support if making a complaint.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Local MP

MP may be interested if you are unable to get recommended treatment. MPs website should list when MP holds advice surgeries. If it's difficult for you to get out then it should be possible for someone from MPs office to visit you at home.

parliament.uk/mps-lords-and...

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

May be some useful B12 info in link above and elsewhere on B12 deficiency info website. There are letter templates that people can base their own letters on.

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

[Queeniz in reply to Sleepybunny]

She wrote “i refused treatment “ And she didn’t even tell me in fact she lied to my face and has watched me get so ill over nearly 5yrs,

i had pneumonia 2yrs ago to the point i was put in to a coma it had got so bad i nearly died .

[wedgewood in reply to Queeniz]

Have you phoned PAS ? Let us know when you have please . We are concerned about you . I know that you are a member of PAS , and they have some clout .

[buster_uk in reply to Queeniz]

I too have been treated the same way queeniz. Please double click on my name and search for "my story so far" I still have no diagnosis, so took it upon myself to self inject. It's slow progress

But when you are not being helped to get healthy by the people you should be able to trust and the fact they lie to you over an over again. I can only conclude they want people to suffer. Its all very wrong.

Please read my story, your not alone.

[Sleepybunny in reply to Queeniz]

You could write a letter to GP/practice manager asking for a comment to be inserted into your medical records saying that you disagree with the statement that you refused treatment for your PA.

However , GP may see this as confrontational.

Easier to write a letter to GP and practice manager stating that you want to be treated for the PA diagnosed 5 years ago and that it is vital your treatment starts now to avoid damage to your spine.

You could ask to see practice manager but I'd suggest taking someone with you.

Do you have a supportive friend or family member who can go with you and back you up when you ask for PA treatment to be started?

"last summer I had to see a new GP"

Could you make an appointment to see this new GP, as he at least told you about the PA.

If GPs think there is a possibility of a complaint from a patient then they may become very protective of each other.

I think your best bet is to contact the PAS today but PAS office closes at 12 noon.

PAS tel no 01656 769717

There is an answerphone so you can leave a message if no-one answers and someone, probably Martyn Hooper who is the chair of PAS, will get back to you.

The PAS can in some cases write letters to support patients needing treatment.

These are blog posts about PAS supporting people whose injections have been stopped.

martynhooper.com/2016/04/24...

Please don't delay seeking support as there is a real risk of permanent neuro problems if you remain untreated for PA.

You could ring HDA patient care trust and see if they can help you.

HDA patient care trust tel [phone]

You can also contact HDA patient care trust by an online contact form or a letter.

hdapatientcaretrust.com/con...

They are a UK charity. They offer (usually) free appointments with specialists across UK. They will probably need a full medical history and are quick to reply.

[Queeniz in reply to Sleepybunny]

I’ve got osteoporosis which started at age 24yr and it started in my L5 in my spine

[wedgewood in reply to Queeniz]

Queeniz it’s important for you to get in touch with PAS . As you haven’t responded to our pleas , I’m assuming that you haven’t phoned PAS . If you feel you cannot speak to someone , you can email them in the first instance . You will then at least establish a link . Best wishes .

[Queeniz]

I’ve only just come round on the hallway floor I must’ve blacked out earlier. I’m in a state I know & thank you all for caring you’ve all been so welcoming thank you x

[Nackapan in reply to Queeniz]

Have you made that phone call?

Start from today .

Get your treatment

Don't look back .

Look forward.

When you see the doctor you can put the record straight.

You must act NOW to start to get well to look after yourself and your cats.

You are getting good advice on here.

Please do something.

You posted . We are glad. We have responded.

But YOU must act now

[Queeniz]

I will make the call in the morning and then I will post up to tell you all whats been said & my next move x

[wedgewood in reply to Queeniz]

There is no one in attendance today . You can only leave a message . The phone will be manned tomorrow , Saturday.8-12

[SunnyWorld]

Thankyou. We await in anticipation. Please do it. Take care.x

[buster_uk]

Any news Queeniz?

[Queeniz]

I’m not gonna lie to you all, but I didn’t call today cos I’ve found out my cat izzy has Cancer & I’m not taking it well nor do I know where I’m gonna find £3,000 from for her OP???? 😢😢💔💔

[SunnyWorld]

Oh I'm sorry to hear about your cat. There are charities to help if you are in the UK. You really need to help yourself first and ring the PAS. Take care x

[Queeniz]

Thanks for your kind words I’ve found a vets she’s going in tomorrow morning 8:30am she’s a strong girl I know she’ll be okay !!!

After I’ve sorted her out I’ll sort my self out. I’d be a mess without her x

[Queeniz]

Sorry its been long for a reply, my cat Isabelle had the op it went well but she’s still dying, its gone to her lungs

ive everything down so I know what to say tomorrow when I call Pernicious Anemia number ……. im going to die if I don’t I went GP on Monday he didn’t hear a word I said so thats it enough….. I will let you know when ive spoke to them x