Petition update – Your help is needed for the next stage!

Petition response

We’ve had a response to our petition from the Department of Health and unfortunately they have reported what we already know about the regulations for a POM (Prescription only medicine).

They state that we can’t have injectable B12 made available from pharmacies in the UK because of the Human Medicines Regulation 62 section 3.

Westminster Hall Debate

This doesn’t mean we give up. This means we keep on going and thankfully My MP, Jane Hunt is committed to helping and will be making an application for a debate on our petition in Westminster Hall. The focus of this will be that the MHRA allow B12 injections to be given as a boost via hair salons and clinics. More on this in the next blog.

Your MP can help

We need your MP to speak for you, alongside Jane when this happens.

Please ask your MP to come on board, to make a speech on your behalf and get in touch with Jane so that they can work together on this.

Find your MP here: https://members.parliament.uk/FindYourMP

So if you feel strongly about being in control of your own health …

If you have had B12 injections stopped due to COVID…

If you are restricted to 3 monthly injections but need them more frequently…

If you feel you have no choice but to buy B12 from abroad because you can’t access what you need from your GP then please help to make this happen…

Here’s how you can help

I’ve added a draft email for you to use and adapt below so that you can easily send a message to ask your MP to help. It would be lovely to hear of their interest in this, so if possible please let me know by commenting on the blog.

Thank you so much for being part of this, I feel sure that if we keep working together we can make this important change happen.

Together I’m sure we can make this happen.

Kindness always

Tracey Witty

www.b12deficiency.info

Draft email 

Dear

Please can I ask for your support in making injectable vitamin B12 available OTC from pharmacies.

Following a reading of this petition at the House of Commons on the 23rd of September 2020 the Department of Health responded: They state that we can’t have injectable B12 made available from pharmacies in the UK because of the Human Medicines Regulation 62 section 3.

Jane Hunt MP is making an application for a Westminster Hall Debate on this petition and she needs your help.

This issue is really important to me because………………………….

Please contact Jane Hunt MP ( jane.hunt.mp@parliament.uk ) and get involved on my behalf.

Yours faithfully

If you can’t copy the above please find a copy of the text here

 

 

B12 Awareness Day 2020 In the House of Commons

I am delighted to announce that MP Jane Hunt will present a petition to the House of Commons today, Wednesday the 23rd of September 2020, which asks for injectable vitamin B12 to be made available over the counter from pharmacies.

Please note this is my New Government Petition and NOT the Change.org petition.

If your MP also has an interest in this issue, please ask them to come on board and help us to get this passed.

Jane is scheduled to present the petition titled “Removing classification of prescription only medicine from injectable vitamin B12,” at the end of the day just before the adjournment debate, usually around 7pm. There is no precise time yet but you will be able to watch it live on Parliament TV or on BBC Parliament.

The full petition text will be also posted on House of Commons Hansard and the Government will need to respond to it. Too many people are restricted to just four vitamin B12 injections per year which is not enough to heal damaged nerves.

All we can do now is sit and wait for a positive outcome which would bring us into line with many other countries who do allow injectable B12 to be purchased over the counter. This has the potential to make treatment of vitamin B12 deficiency free from stress and anxiety for millions of UK citizens, affording us the same level of dignity and control over our own health as a diabetic injecting insulin.

Huge thanks to everyone who has supported this movement and to MP Jane Hunt and her team for making this possible and for for caring about people with B12 deficiency.

I have everything crossed and I’m you sure you do too.

Kindness always

Tracey x
www.b12deficiency.info

Thank YOU for your kindness in sharing this post. You can buy your “B12 for life” campaign pin here.

 

Incontinence in women, men & children

One of my symptoms of B12 deficiency was bladder incontinence, I had to keep going to the loo and there was no let up during the small hours either.

Thankfully this was one of my symptoms which corrected within the first weeks of regular B12 injections. Had I not realised I was B12 deficient, I may have believed it was due to my age or my shoe size or my eye colour and perhaps even ‘perfectly normal’. Some of us have difficulty seeking help for incontinence and see it as something to ‘put up with’ rather than something that could and should be treated.

Each time I see TV adverts for companies selling incontinence pads (or those weird ‘pretty??!’ crepe britches) showing young women stating that incontinence is ‘perfectly normal’ I’ll ask the telly, “what if it’s caused by B12 deficiency?”

Apparently 1 in 3 women experience bladder leaks, this is a massive number, some of whom might potentially be in need of B12 but may be unaware of low B12 being a cause.

This report from the BBC shows that the Royal College of Nursing (RCN) has issues with these adverts. They criticised TENA for not highlighting to mothers that treatment for the condition is available.

The RCN said: “Incontinence is known to be under reported due to the embarrassment experienced by women living with the condition.

Female incontinence
As you’ll see from the information on the NHS link below, there are a few causes for bladder incontinence related to the pelvic floor muscles, and although they do list ‘neurological conditions that affect the brain and spinal cord such as Parkinson’s disease or multiple sclerosis’  –  just think how helpful it would be if they could alert people by adding B12 deficiency to this list?

  • damage during childbirth – particularly if your baby was born vaginally, rather than by caesarean section
  • increased pressure on your tummy – for example, because you are pregnant or obese
  • damage to the bladder or nearby area during surgery – such as the removal of the womb (hysterectomy), or removal of the prostate gland
  • neurological conditions that affect the brain and spinal cord, such as Parkinson’s disease or multiple sclerosis
  • certain connective tissue disorders such as Ehlers-Danlos syndrome
  • certain medicines

Male Incontinence
Men also experience incontinence and it’s no surprise that they are even worse than women for talking about it or seeking help. Naturally there are some different causes listed for males (please see below), but would it be on the radar of the GP to test for B12 deficiency even if the subject of incontinence arose at an appointment?

  • chronic cough
  • constipation
  • obesity
  • bladder or urinary tract infections
  • an obstruction in the urinary tract
  • weak pelvic floor or bladder muscles
  • loss of sphincter strength
  • nerve damage
  • enlarged prostate
  • prostate cancer
  • neurological disorders, which can interfere with bladder control signals

Other lifestyle factors that may lead to UI include:

  • smoking
  • drinking
  • not being physically active

When you can’t remember where you live, or who loves you…..

Our poster boy Jasper has been showing the signs of his advancing years.  He was a rescue so we can’t be sure how exactly how old he is, but he’s at least fifteen.

His eyesight and hearing have been deteriorating for a while so we clap to get his attention. People seeing this think we are congratulating him rather that trying to communicate where we are!

A few weeks ago he suddenly stopped being interested in food, he was noticeably confused, he stopped barking, or making any sound at all.

 

dooby-b12-text-version

He has always loved a particular fluffy sheep toy but he no longer recognised this previously constant companion.

He wanted to be outside a lot, but then could not find his way back in, he would stand in one spot under a tree or would stare at the wall vacantly. He failed to recognise us.

His eating habits completely changed and some days he turned his nose up at everything offered. His co-ordination was also affected and at times he struggled to stand up.

He was very distant and for a normally loving and friendly dog this was a real shock.

Three weeks ago our vet came out to assess him and check he was not in any pain and confirmed he was showing signs of senility.

The first thing the did, was give him a B12 injection.  Stating that he could have these when required.

The following two days were much the same as before but on the third day, we were astounded. He wanted to eat, he was happy, he had stopped wanting to be apart from us, he barked and found and chewed on his old friend the sheep!!  He still moves like an elderly dog, he still can’t see or hear too much – but the essence of him is back.

Of course B12 is not the answer to every ill. It is however essential to life and for those who are deficient, whose systems have been starved of it, it can have a miraculously swift effect. This is what B12 does for those of us in need, it gives us our essence back.

Don’t all dementia patients deserve this chance, before it’s too late – just in case?

B12 deficiency is very common in the older population, for many reasons; one being low stomach acid, not helped by the over medication of PPI’s and other acid suppressants.

There is no routine screening of so many at risk patients and too many elderly B12 deficient patients may be missed when there are guidelines for doctors like these below;

Wouldn’t it be lovely if our doctors were not constrained by such ridiculous and out dated instruction?

The name ‘Pernicious anaemia’ confuses doctors – many patients NEVER present with anaemia/macrocytosis – this is very late stage. NICE and BNF Guidelines still categorise B12 deficiency under anaemia and this needs to change.

Thankfully our vet did not have to concern himself with proving Jasper was anaemic, he didn’t have to wait for a B12 serum test, he knew that this kind of presentation in an elderly dog could be down to B12 deficiency and his injection was given without any hesitation. He can also have B12 injections regularly without any quibbling.

If only B12 deficient humans, of any age, could be treated in the same sensible way as this little old fella, the world for them would be so much less confusing.

For those who may be B12 deficient please see this page;  www.b12deficiency.info/what-to-do-next/

If you feel strongly about the restrictions on our B12 treatment please sign and share this petition

www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Best wishes

Tracey

 

East Lancashire NHS Trust – you win the trophy hands down, for dangerously low, lower reference level for serum B12 test, 110 – 914ng/L!

Just take a look at these results, which are being ignored by the GP (see previous post) and then have a gasp at that lower reference range, are you still standing?  NO?…. neither is the patient.  They remain exhausted with regular blackouts.

What are you doing to your patients East Lancashire NHS Trust?

How many Lancastrians have been misdiagnosed with other illnesses due to the almost impossibility of achieving a diagnosis of B12 deficiency under this Trust?

IMG_20140611_100402

 

East Lancashire NHS Trust need to identify all the inevitable misdiagnoses due to this incredibly low reference range – we thought Cardiff and Vale NHS Trust were bad but this really takes the biscuit.

Exactly how many patients have been incorrectly misdiagnosed with;

Alzheimer’s/Dementia?

Depression?

Chronic fatigue syndrome?

Fibromyalgia?

Multiple sclerosis?

M.E.?

Psychosis?

Bipolar?

Vertigo?

Congestive heart failure?

Chronic pain disorder?

Anaemia?

Autism?

ADHD?

How many babies fail to thrive?

How many children have a diagnosis of developmental delay, mental retardation?

How many metformin taking diabetics have their neuropathy incorrectly attributed to diabetes?

How many new mothers sectioned with post natal depression from inactivated B12 supplies?

How many benign essential tremors have automatically led clinicians to an incorrect diagnosis of Parkinson’s?

How many Strokes and heart attacks?

How many suicides?

East Lancashire NHS Trust we implore you to change this assay kit and re test all who have gone before and to screen all those patients who have left the GP’s office with nothing more than a diagnosis of hypochondria.

TAKE ACTION NOW – THIS IS SERIOUS!!

Please visit www.b12deficiency.info

http://b12deficiency.info/children-and-b12.html

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Please sign and share our petition

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Best wishes,Tracey