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

 

 

Pigeonholed by a mental health diagnosis

I cried. I was upset for me, lost career, broken relationships, years crippled in bed and money down the drain.”
 

Will this devastating account of loss resonate with you? Flo’s eloquently written experience sent to me in early September 2020 follows below.

Dear Tracey Witty,

I wish to express my sincerest thanks for all your work. I stumbled across your site a few weeks ago. When I read the case studies especially of Sara and poor Paul, I cried. I’m 47 and I had my first vitamin B12 injection yesterday and will be having another 5 over the next couple of weeks.

I had a diagnosis of bipolar in 2012 whilst working as a midwife. It was my first job and I became hypomanic. My sister who was studying medicine had suggested I had bipolar several years prior and I saw a psychiatrist who put it down to life events. When I realised in 2012, that my thoughts and behaviour were erratic, I visited my GP who referred me quite promptly. I was diagnosed, bloods taken (no vitamin b12) mood stabilisers prescribed but I soon became exhausted, forgetful and I couldn’t do my job. I could barely get out of bed and so became suicidal.

I rang my mum, she and my step dad moved me home where I remained in bed basically for nearly a year. During this time, I asked my GP to refer me as I had peripheral neuropathy in my feet and I had gone off eating fruit (it is relevant). My psychiatrist, kept insisting I walk 5k a day, I’d had a back injury as a midwife so was seeing a chiropractor 3 times a week, needless to say I told the psychiatrist where to go as he wasn’t prepared to treat me holistically.

I had started a little cleaning job which I struggled with as my whole body ached and my feet were painful but I’d skip breakfast, lunch and only eat dinner. My mum was diagnosed with lung cancer and so she asked me to move out. I found a nice place to live, ate healthily – chicken, vegetables and fruit. I didn’t realise how fussy an eater I am until recently but whilst living with my mother I ate whatever she cooked. By the time the appointment for my feet came through 5 months later my symptoms had dissipated. I was back in the gym, enjoyed going to the cinema, etc. I did keep having ups and downs which were quite seasonal but I was discharged from the community mental health team.

Until 2017, I felt awful, I went to my GP with the usual sore throat, swollen glands and flu like symptoms in early February after suffering for 5 weeks. This had always been put down to a winter virus. I went back five times with advocates, each time my condition was getting worse and worse. I wanted to see a rheumatologist and neurologist. I struggled to walk in a straight line, I had hand tremors and poor bladder control. I was told that there wasn’t a need and you don’t need analgesia. I referred myself back to the CMHT (Community Mental Health Team) as again I was suicidal. I wanted to do sport, I wanted to cook for myself but I just physically wasn’t able to. 

I moved Practice and the new GP was very receptive, I had a diagnosis of fibromyalgia, being a midwife, I’d kept diaries, so I had times and dates of symptoms. I also had read about the paleo diet which I had unknowingly done in 2014. I was referred to a private rheumatologist, a private neurologist and nerve pain prescribed. Thinking this was the answer to my prayers, I started to wean myself off the psychiatric medication but didn’t care about what I was eating. Needless to say, in 2018, I got sectioned for 6 weeks. Whilst there, I insisted on seeing the hospital GP as I knew there was something wrong with my body.

I wrongly assumed I had Ehlers Danlos syndrome, my joints hurt, I was chronically constipated and even though my thoughts were manic, I had fatigue. I then phoned the local private hospital and saw their GP. Whilst in hospital, I had gastrointestinal complaints and kept vomiting with exception for one occasion, I was only offered an antiemetic (anti sickness) injection. Only one person asked “what do you think is making you sick?” And I couldn’t answer because I couldn’t remember that I had had a positive blood test indicating that I had coeliac disease.

I have had a bad stomach since I was 21, for 12 years I barely ate, (it is quite common for females who have coeliac or non coeliac gluten sensitivity to have eating disorders). In my twenties, I had a couple of trips to A & E with excruciating abdominal pain, not pregnant, not appendix just IBS or trapped wind, I was just discharged.

Last week, I found the letter from the neurologist dated February 2018 where he had written in bold the actual figure of my gluten test and it was highly likely that I did have coeliac disease but I had told him that I didn’t want endoscopy as I struggled swallowing. I was pretty manic when I saw him which he recognised and the psychiatrist quoted my appointment with him at my tribunal (to continue my detention) but the information regarding my intolerance of gluten was not passed on.

When I was discharged from the psychiatric hospital, I was a broken and confused woman, afraid of my own shadow and I stayed like that for another year. I had insisted whilst an in-patient there that I see a dietician as I was starving all the time but by the time the appointment came through several months later, I did not have the energy to attend. I couldn’t remember how to do housework, how to go shopping, I was practically mute and my brain hurt all the time. I had a CPN beg me, “what can I do to make you better?”. She’d drive me to Boots, she’d sit in the car and I’d have to go in and buy a “meal deal,” whilst waiting in the queue I’d feel dizzy and think I was going to pass out.

On Monday 3 June 2019, I changed my diet, I removed junk food and would only have the occasional piece of bread a week. I dislike most other complex carbohydrates like pasta and noodles and within 2 months I was myself, not trying to stagger around like some drunk person. I was back in the gym, found a Tai Chi class , the psychiatrist had tried all different combinations of medication over the course of a year and when I saw her in August 2019, she said we’ve finally found it. In October 2019, she asked me whether there was anything physically wrong with me and I honestly thought I’d made it all up.

This January, I started becoming ill again, feeling like I’ve got the flu, sinusitis, bad stomach, erratic periods, joint pain and chilled to the bone. I’d complain about my symptoms at my weekly appointment to a psychiatric occupational therapist technician (OTT) but I’d also tell her what I’d done to help myself, like go to the GP, colonic irrigation, keep a food diary.

I was absolutely amazed when a reflexologist was able to tell me that my B12 and calcium was low and my small intestine that it was inflamed. I’ve had lots of reflexology and acupuncture before, but this was precision. I was pretty certain it was my diet but my OTT was having none of it and would tut and roll her eyes. When you have a mental health label you get quite a lot of discrimination. I realised that I was lactose intolerant one weekend after only being able to eat yoghurts with dire consequences and again I was back at my GP’s demanding blood tests. The results showed gluten intolerance, the OTT was astounded when I told her over the phone.

Over COVID I was pretty physically ill, my bloods looked pretty okay, I had fibromyalgia symptoms but it was okay, I’d ride the storm. Done it before, did it again, I knew why. I had home help, I clued up on coeliac disease. Then a new psychiatric occupational health therapist kept ringing me in July and suggesting I go back to do voluntary work as lockdown was lifting. It was so predictable, I tried but post exertion malaise hit me for 9 days after 2 two hour shifts 2 days apart.

Three weeks ago, I rang my GP and I tried to explain the fatigue and how the CMHT (Community Mental Health Team) did not understand, I felt I wasn’t making sense. I also told her that I’d been gluten free since March, I still could not tolerate fruit (for 4 months the thought turned my stomach, I now know fructose malabsorption indicates that the small intestine has been pretty damaged, worse than lactose). I was extremely fortunate that this doctor took control and wanted me to have repeat bloods including B12, vitamin D and informed me to get the OTT to ring the surgery.

I knew I was unwell as I had awful vertigo, tachycardia and was breathless – iron deficiency. I got my results printed yesterday, I knew very little about B12 deficiency until I read your website, bought Sally’s book and I cried. I was upset for me, lost career, broken relationships, years crippled in bed and money down the drain.

Tracey, there are somethings that you are pretty certain of in life, I know what is me, I know what happens to me when I eat large quantities of gluten when I was diagnosed, I’d kept making the girls on the ward cheese scones and mini sticky toffee pudding cakes which I had to sample of course. I’m fairly sure I don’t have a mental illness but it won’t be a biggie if I have to stay on a mood stabiliser. Both vitamin B12 deficiency and coeliac/gluten sensitivity is systemic. I’ve tried to convince my best friend but they do not have medical understanding, so NICE guidelines, the Lancet and BMJ isn’t really on their reading list.

I used to have friends who have mental health issues but I couldn’t really relate to them, their overthinking or not being proactive so I cut them loose. I’ve never had a panic attack, I don’t get anxious about meeting people or going out, I have never needed anyone to hold my hand. I’m quite capable of standing my ground and drawing boundaries. My quality of life has been poor for most of my adult life, it was not IBS. Yes, I was stupid to go back to eating gluten once given a result back in late 2017 as I didn’t realise the dire consequences of it.

I just wanted the opportunity to tell my story and I’d be grateful of just a quick email back saying you’ve read it, I’m happy to pay you £120 just for that, as your work is so insightful.

I’m quite into watchful waiting, you see what arises over a course of time and I do wonder what symptoms I will get.

I’ve decided never to knowingly eat gluten again and to decline the biopsy. Similarly, I’ll be keeping an eye on my vitamin B12 levels.

Thank you in advance.

All the best,
Flo C

________________________________________________

Flo is not alone in being ‘pigeonholed‘ by poor mental health. When physical causes are not explored and treated then the results can be devastating.Please see this page for the many causes of B12 deficiency.

And this page if you think you or a loved one may be B12 deficient.

I created my site 7 years ago last month to help educate both patients and health care professionals. This was because someone close to me was sectioned due to B12 deficiency and was also pigeonholed due to poor mental health. I’m also B12 deficient so understand the issues you face.

If you would like to help in a small way, please use the following link: https://www.b12deficiency.info/how-you-can-help/

Thank you, Tracey x

www.b12deficiency.info

Fingers crossed…

For anyone who didn’t catch the presenting of the petition last night please see this link 

MP Jane Hunt, did an amazing job for us in summarising the written petition, the text from which I add below, but it can also be viewed on Hansard here.

This was not the Change.org Petition
To clarify, this was an entirely new Government Petition signed by me and Damian as it was being presented by Jane who is our MP.
It was however really important to mention the 94,000 signatures we have already garnered from the Change.org petition so that the strength of feeling was demonstrated.

Here’s the full wording:

Petition: Removing classification of Prescription Only Medicine from injectable vitamin B12

To the House of Commons.

The petition of the residents of the constituency of Loughborough.

Declares that a lack of B12 can have far reaching and significant effects on both physical and mental health; notes that a significant number of people who are B12 deficient are unable to absorb the vitamin from food or supplements, and so need to inject it, which they can only do at their GP practice; further notes that NICE CKS guidance states that treatment of B12 deficiency in people with neurologic involvement should include injections on alternate days until there is no further improvement; further notes that a restricted maintenance dose of just four injections per year is what is normally allowed, which can leave people physically and mentally unable to contribute to either family or society, and lead to permanent neurological damage; further notes that, in response to a Freedom of Information request asking for the clinical evidence for the three monthly maintenance dose, the Medicines and Healthcare products Regulatory Agency stated that they were unable to obtain this information; further notes that B12 injectables should be made available over the counter at pharmacies, which would bring our approach in line with that of other countries, affording those with B12 deficiency the same dignity and control over their own health as a diabetic using insulin, and reducing the workload and financial burden on GP practices, District Nurses and other NHS services; further notes that a Change.org petition started by the petitioners on this issue has garnered over 94,000 signatures.

The petitioners therefore request that the House of Commons urges the Government to remove the classification of Prescription Only Medicine from injectable vitamin B12.

And the petitioners remain, etc.

 

Now all we can do is hope and wait for a positive response that will give us the ability to treat ourselves according to our own individual need.

I will keep you updated!

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.

 

 

 

 

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.

 

B12 deficiency affects men too

Men are notoriously resistant to visiting a doctor and this can make their diagnosis and treatment of B12 deficiency much more difficult, especially since it is generally seen as a condition that affects women.

Many non specific symptoms of B12 deficiency, if looked at in isolation, might seem like nothing to be overly concerned with. They could be attributed to age, lifestyle, being a parent or stressful circumstances and many people try to rationalise why they feel a certain way……  ‘it’s work, everybody feels a bit down, irritable, apathetic or tired sometimes’.  But, what if these symptoms are ever present and you carry on sweeping your feelings ‘under the carpet’ when you could be helped?

You have 10 minutes

Some doctors insist we only talk about ‘one problem’ during an appointment of 10 minutes, so before we even start we may feel hurried and stressed. This also makes it really difficult for both parties to get a grip on the whole picture.

Imagine you have erectile dysfunction and impotence and mention this to your doctor but without your other symptoms, for example tinnitus, blurred vision and breathlessness, it might be that a little blue pill is prescribed when what might be needed to correct this for you, is B12 injections.

We can’t see what a complete jigsaw will look like with only one piece and no box lid to look at, so why is it understood that by some miracle the correct diagnosis and treatment will be given if we are only able to talk about one aspect of what we might be experiencing?

It’s essential that you don’t suffer in silence. 

If you haven’t had B12 deficiency ruled out yet, then please see the symptoms here (the poster features just a handful) and list any that you are experiencing.

Check if any of these causes strike a chord and note these too, you may have a family history of B12 deficiency or you could be taking a drug which interferes with absorption of B12.

Make an appointment with your doctor, make sure you have someone with you for support, they may remember things you have missed. Don’t be shy, the fuller and clearer the picture, the better the chance of the right help.

Timely, correct treatment of B12 deficiency can reverse symptoms and give you your life back!

Sharing information

If you know someone with symptoms of B12 deficiency who has not explored this as a cause, then please share this blog with them.

I’d love to hear your thoughts, so please comment below.

Very best wishes

Tracey x
www.b12deficiency.info