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

Make your comment count if your B12 injections are being stopped!

First of all THANK YOU so much for your signatures and sharing of our petition which asks if we can access our B12 injections OTC from a pharmacy.

Petition update: Last year Nicky Morgan my MP met with Dame Sally Davies about the petition and the lack of education our GP’s receive on B12 deficiency.
Dame Sally Davies then wrote to the then Chair of The RCGP (Royal College of General Practitioners) about the outcome of their meeting. In the midst of all this Brexit got in the way.

Dame Sally Davies then stepped down and so did the Chair of the RCGP.  So the communication chain here was broken.

Then we had a general election.

This meant that over 7 and a half years of work between myself and my MP had to start again. They were not allowed to keep past records from constituents so all that work and communication on their side was deleted.

You’ll appreciate how depressing this all was.

The work of getting the petition in front of those who can help us to change things did start again a few weeks ago when I met with my new MP Jane Hunt.

Jane has been involved from the very beginning as she was Nicky Morgan’s case worker. She has had to put up with 7 and a half years of me making a nuisance of myself regarding B12, so is fully primed and backs us all the way.

Please consider commenting or writing to your MP too.

This update is asking if you could take the time to comment on the blog posts below to state if you are being denied B12 injections due to #Covid19 or for any other reason. The reason for this is so that my MP can direct those she is working with directly to patient experience.

The problem with only commenting on FaceBook is that this moves quickly and gets lost. Your comments on the blogs give us a clear picture of what is happening to you and it gives us a permanent place to show those who can make change.

If we could buy B12 ampoules from UK pharmacies and self inject this would save millions for the NHS, take pressure off GP Practices and people with B12 deficiency could be in charge of their own healing.

Obviously in the midst of Coronavirus NHS and GP services are under huge strain.
Many are being told their essential injection appointment is cancelled, if all our MP’s and health agencies can work together then maybe we can make change in the not too distant future by making injectable B12 available over the counter.

So please comment here;

If you are being denied treatment due to Coronavirus please comment here;
https://www.b12deficiency.info/blog/2020/03/17/the-new-c-word/

If you are being given tablets instead of B12 injections due to GP’s lack of knowledge:
https://www.b12deficiency.info/blog/2019/07/26/wherever-we-are-in-the-world-we-are-all-in-the-same-boat/

If you are being told you no longer need B12 injections because your levels are normal:
https://www.b12deficiency.info/blog/2019/06/20/a-bizzarre-and-wasteful-practice-is-your-doctor-following-this-crowd/

The World Health Organisation has hydroxocobalamin listed as an essential medicine, we need B12 to live so let’s work together.

Finally, many of you have been asked to “chip in” financially by Change.org to get this petition in front of more people. That “Chip in” money goes to the very wealthy Change.org owners. It does not go directly to the cause you might be supporting. We can do the sharing ourselves without a cost to anyone.

Obviously any spare cash you have at the moment would be welcomed by food banks and the most vulnerable.

If in the future you want to support www.b12deficiency.info this can be done via the donation button at the foot of my website.

Thank you and take care
Tracey x

 

The new C word

I know we’re all up to our necks in Coronavirus blogs but I hope some of the following helps.

UK GP’s
My Practice sent a message late last week saying nobody can have a face-to-face appointment with a doctor. B12 injections are still being given by nurses – as long as the patient doesn’t have a cold or any other flu like symptoms.

But what if they do? And what if you are being shoved to the back of the queue and being told your injection is non essential?

Each practice is going to have a different take on this so it will be down to individuals to try and find a solution from your Practice. It may be that they have something in place on their websites so check this too.

Perhaps there is someone close to you who would be able to give you an injection if you can get your ampoules on prescription?

Perhaps you could ask if a loved one who is well, could be taught to give you your injection whilst we’re in this chaos.

Or ask if there could be provision at your Walk in Centre?

Unfortunately your Pharmacist can’t give you your injection unless there is a Service Level Agreement (SLA) or a Standard Operating Procedure (SOP) in place.

Remember that B12 is listed by the World Health Organisation as an essential medicine (see page 19) and B12 injections are necessary, just as insulin is necessary for a diabetic.

There will be a way you can get your injection and your Practice owes a duty of care to make sure it happens. We just need to try and stay calm and be a bit more patient during the crisis.

The following statutory NHS Bodies are responsible for commissioning health care services so if you are struggling please contact yours;

Find your CCG here if you are in England

Your Local Health board in Wales

NHS Scotland Health Boards

Local Commissioning Groups Northern Ireland

The news
I haven’t chosen to watch the news or read a newspaper for years years because for me it’s depressing and damaging. Currently it’s wall to wall panic with coronavirus.

I was annoyed with myself for becoming glued to the end of a TV report on Madrid and the Spanish State of Emergency on Sunday night where a lone person in a Square was told to go home and stay inside by the police.

This part of the whole crisis made me worry, it interrupted my sleep. I can’t imagine being separated form other humans in this way. I’m already walking around holding my arms by my sides like an Irish dancer, resisting my natural urge to touch people. We are social animals and although some personality types thrive on periods of solitude, mine really doesn’t.


Freedom
The thought of not being able to walk freely, being isolated and being separated from their communities and families may be a bigger terror for people than than catching the virus itself.

So, I’ve had a word with myself, I will not watch anymore news and I’ll deal with any restrictions as and when they might occur.
I will not begin to panic buy.
I’ll do what I advise others to do and that is to set aside only ten minutes out of any 24 hours to worry and leave it at that.
Worrying does absolutely nothing to help anyone, but it does cause us great stress, so conserve your energy and focus on other things that you can effect.

Wildly unthinking behaviour
The meaning of panic -as if you didn’t already know!! Is: sudden uncontrollable fear or anxiety, often causing wildly unthinking behaviour.
This wildly unthinking behaviour clearly helps no one – but is naturally contagious.
I went to a supermarket on Sunday and asked a staff member how she was feeling, she looked exasperated, saying “It’s worse than Christmas“.
These staff are on the front line too, some feel physically knackered by their increased workload, some are also panicked but are carrying on. They’re dealing with fraught customers and the extremes of panic buying, refilling shelves as quickly as they can. They deserve thanks, kindness and calmness at this time.

If Anxiety is part of your B12 deficiency picture then watching the news is going to make you worry about the world at large and your own health. So if you can STOP it or at least limit it, what you do need to know will filter through.
Why not download apps such as Headspace or Calm these may help if you are struggling with rising levels of panic?

Christmas 
If this feels like Christmas to staff in shops and supermarkets then perhaps the best way we can get through this is to treat it like a Christmas break. If there’s nothing we can do why not use this period as an exercise in self-care, get jobs done that you have been meaning to do for an age.
Maybe…..
Have Epsom salt baths
Sort out your wardrobe and cupboards, learn to fold like Marie Kondo.
Bake – if you have any flour
Declutter, so that when this calms down you feel renewed & ready to start living normally again
Start to learn a language or to crochet.
Make soup, there’s plenty of fresh food
Watch your old DVD’s and Netflix Watchlist.
Sort out your photographs
Delete unwanted emails
Finish your unfinished projects
Read that pile of magazines you’ve gathered up over the years
Get that jigsaw out
Weed the garden
Skype your loved ones, write letters, get in touch with long lost friends.

Rather than watching news try and make a point of only watching uplifting things. Watch comedies, funny is better for your heart and soul.

We’re not being made to stay inside, not yet at least, so get outside info the fresh air.
Do things when you feel like it and rest when you don’t.

Take some vitamin C and some zinc. Don’t do like I have in the past and take zinc on an empty stomach, it may make you vomit.

Pull together
If you have been caught up in the hysteria of panic buying but now you can’t move around your home with out banging into your purchases, it’s time to find your local food bank. These are not doing well at all. Remember not everyone could panic buy even if they wanted to.

This is a time to pull together (at a safe distance) rather than to separate, it’s a time to connect with neighbours, if you don’t know their telephone number already, get it and give them yours. You may need each other. Check on people living alone, drop a note through the door to see if they need anything if you feel you can.
Shop local, support the independents, they may still have loo rolls!
Keep safe, wash hands, hello with elbows and limit the news.
Best wishes
Tracey

“YOU are JUST A WOMAN!”

 

What, no loading dose?
I have been helping someone in the county of Lincolnshire to access treatment and I can say with all honesty that it is THE most difficult and frustrating case I have ever taken on.

I have been told on two separate occasions that GP’s in this area don’t give loading doses as there is “no benefit to patients“. Once by a Practice Manager and once by a female District Nurse. Both are seemingly embarrassed about having told me this apparently ‘privelidged information’ about a certain (and hopefully small) group of GP’s.

The Practice Manager now denies saying it and the District Nurse’s superiors also deny it happens and yet the patient still remains ‘unloaded’.

Persistence…
I continue to dig around to get to the truth about this bizarre situation, so if you live in Lincolnshire and have not received your loading dose either, please consider getting in touch and giving me the name of your Practice and GP so that together we can make a change. (This goes for anywhere else in the UK too).

I have reminded the Practice of NICE Guidance. This states that a loading dose of 6 injections should be given and that this every other day frequency should be continued for those with neurological symptoms. This regime exists so that the patient has the best chance of recovery.

My help, or interference as this Practice sees it, is unwelcome and has fallen on deaf ears. Imagine a drawbridge being pulled up and port cullis being heavily dropped. This is arrogance, ignorance and stubbornness at an unprecedented level.

The Clinical Lead at the CCG (Clinical Commissioning Group), who is also a GP has said “the Practice were likely right in regards to their cautious approach” – Shocking! This wet comment smacks of a doctor not wanting to go against a peer rather than making sure (as they should do) that the patient’s needs are at the heart of the matter.

I won’t give up on this patient or on the wider situation, but my persistence causes some health professionals I’m dealing with to become angry …….

Belittling behaviour…
When I explained about the pointlessness of just one B12 injection for someone so severely affected the disgruntled District Nurse I mention above, loudly told me, “YOU ARE JUST A WOMAN!”  (I know, a shocking lack of sisterhood!)

So I agreed with her. Obviously it was meant as an insult, but agreeing with someone when they’re insulting you has a miraculous effect. It completely takes the wind out of the sails.

Essentially her statement was correct, I am just a woman;

Just a woman who cares 

Just a woman who wants to make change

But what the nurses statement was really saying was;

“you are ONLY a woman, you are not a nurse like me or a doctor, how can you know all these things and I don’t? How dare you make me feel inadequate?”

I understand her frustration. I understand her annoyance at not knowing about B12 deficiency, I’d be annoyed too…..she was however shouting at the wrong person, perhaps she should have been asking others around her why she hadn’t been taught more about this vitamin than how to give B12 injections.

It’s a fact that most people with B12 deficiency know more about their condition, how it affects them and how it should be treated than their doctor or nurse does. Wouldn’t it be lovely if this truth could be embraced and the patient’s knowledge tapped without the healthcare professional feeling inferior?

The reason that my site and others like it exist is because the teaching of B12 deficiency for those who need it is far too sparse and this needs to change.

Best wishes Tracey

www.b12deficiency.info

If you are a health professional and you and your colleagues want to learn more about B12 deficiency please click here.

If you are experiencing problems with accessing treatment;

For testimonials please click here.

Please note that the NICE link is unavailable outside of the UK.

 

Can you spare a minute for Matthew?

In November 2012 Matthew Leahy was admitted to a Mental Health Unit  – The Linden Centre, Essex where he was found hanged seven days later. He was just 20 years old!

Matthew’s mother Melanie has since become aware of his low vitamin B12 levels, and probable coeliac disease. His symptoms included; psychosis, depression, insomnia, exhaustion, constipation and stomach problems.

I’m reaching out to ask you to sign Melanie’s petition; https://petition.parliament.uk/petitions/255823

From Matthew’s records it appears the first sign of B12 deficiency was recorded in May 2011 at a level of 127pg/ml, reference range 180 -914. In June 2011 low B12 was recorded again.

In Matthew’s notes it states that in July 2011 his B12 level was 154pg/ml and that B12 was prescribed, however, this was not given by injection, if at all, because in August 2011 Matthew’s B12 level had dropped to 122pg/ml.

It is also clear from Matthew’s notes that his thyroid function was impacted.

Matthew’s B12 levels were below range and dropping. See the note to the GP that they state “T4/TSH and B12 were ‘slightly abnormal and kindly arrange follow up blood test”. BUT NO treatment for these was instructed or given.

You can see that below an extremely low level of 122pg/ml is recorded as ‘normal’. Matthew was heavily symptomatic for both B12 deficiency and thyroid dysfunction and despite repeated testing, correct treatment was not given.

If you are from the UK please sign this petition and share this blog. Melanie needs to reach 100,000 signatures by the 6th of November for her petition to be discussed in Parliament – this date has been brought forward from the 23rd of November due to Parliament closing for the General Election so it is a race against time.

At the time of writing the petition has 54,050 signatures.

Melanie’s aim is to have a Public Enquiry into the failings surrounding Matthew’s death in order to help stop this happening again.

Please sign by following this link; https://petition.parliament.uk/petitions/255823

You only need to give your name, email address and postcode and then you must confirm the email from the Petitions Team for your signature to be counted.

The connection between poor mental health and low B12 was made over 100 years ago but too many remain untreated despite severe symptoms and low B12 levels. Please see; http://www.twitlonger.com/show/n_1s0ggga

If you or your loved ones are experiencing mental health problems and B12 deficiency hasn’t been explored please see; https://www.b12deficiency.info/b12-and-mental-health/ and;

https://www.b12deficiency.info/what-to-do-next/

#matthewleahy #matthewscampaign
#MatthewLeahy #aminute4matthew
You can visit Melanie’s website here and FaceBook 
If you are experiencing problems with accessing treatment;
Thank you for your help in signing and sharing.
Best wishes
Tracey x