Severe mental impairment, are you getting the financial help you’re entitled to?

Many of us have been deeply affected by COVID and the resulting restrictions, the effects on mental health, physical health and finances have been devastating for too many people. So I hope that in some small way this post helps those who have not applied for what they should be claiming from their council.

This post is for people in the UK who pay Council Tax and live in England, Scotland and Wales. Northern Ireland has a slightly different system so please see the link below.

A big thank you to my lovely mum for sharing this information with me.

The following text is from the excellent Martyn Lewis, Money Saving Expert website and details ‘how to claim’:

“Who is eligible for the severe mental impairment discount?

Both of the following must apply for someone to qualify for a severe mental impairment (SMI) council tax discount:

  • They’ve been medically certified as being severely mentally impaired. For example, this may be the case if they have dementia, Parkinson’s, severe learning difficulties or have had a stroke. It will depend on each individual’s case though and simply having been diagnosed doesn’t automatically mean they qualify –  a doctor must also certify they are severely mentally impaired.
  • They’re eligible for (but NOT necessarily actually receiving) at least one of the following benefits:
      • Incapacity benefit
      • Attendance allowance
      • Severe disablement allowance
      • Disability living allowance (higher or middle-rate care component)
      • Increase in disablement pension (due to constant attendance being needed)
      • Unemployability supplement or allowance
      • Constant attendance allowance
      • Income support (which includes a disability premium)
      • Personal independence payment (standard or enhanced daily living component)
      • Armed forces independence payment

    In England and Wales you can also be eligible for:

      • Disability working allowance (based on getting income support including disability premium)
      • Universal credit (including an element for limited capability for work or limited capability for work and work-related activity)

    In Scotland you can also be eligible for:

    • Tax credits (including disability element)
    • Employment and support allowance
    • Universal credit

Just to be clear, some councils wrongly tell people they need to be receiving these benefits. That’s not correct – the law simply says you need to be eligible for them.

In Northern Ireland it works differently

There’s a rates system there instead of council tax, meaning every property is valued individually. The only roughly similar discount is the disabled person’s allowance, which gives a 25% discount on rates for homes where a disabled person lives and the property has been adapted to suit their needs. See full info on the NIdirect website.”

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This link also walks you through the steps of how to calm a rebate and how to claim if you live with someone who was eligible but has since died.

The money comes from Central Government and not the individual councils and this has been highlighted over the years by MSE because only a fraction of people who are eligible actually claim. Check if you can, all conditions are not listed and each case is individual, you have nothing to lose.

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So if your B12 deficiency has lead to severe mental impairment (SMI) or you know anyone at all who should claim, please pass this information on and don’t be fobbed off!

 

 

We are all still trying to get used to life again and unravelling the mysteries of how to do normal things, how to communicate, who we can and can’t see or touch, where to stand, what to wear, how to shop and how to generally be, this takes its toll in many ways and impacts us all differently.

I have struggled with the separation from people in this period and many of us have experienced loss or a sense of loss and a whole heap of confusion.

Some of us try to look like we’re coping on the outside but it’s turmoil within, this can result in even more isolation and less contact than we are now allowed. So if you are struggling, please make sure you let someone know, just so that they can quietly keep an eye on you. We all need each other.

My advice back in March, for what it’s worth, was to limit exposure to the news, I still hold solidly to that, so much of what is given out induces fear, anger and anxiety.

A very wise woman (Lynne M) once taught me about the power of baroque music in times of great stress and although not baroque, I hope this link may be of interest to you.

I’d love to hear from you so please comment below.

Kindness always,
Tracey x

www.b12deficiency.info

P.S Just a quick note to let you know I am still working with my MP on trying to make B12 OTC in the UK. I will keep you updated!

 

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

 

B12 the Antidote – joining up the dots

We may be exposed to poisonous gases and chemical toxins to different degrees at some point in our lives, whether it be from air pollution, exhaust fumes, pesticides, cleaning products or from faulty or poorly fitted appliances within our homes or workplaces.  Flood, fire and warfare are all situations where potential exposure to toxic gases can occur.

However, B12 in the form of hydroxocobalamin is an excellent toxin scavenger, this means that if you are exposed your levels of B12 could be inactivated and depleted.

Could you be an unknowing victim? Do you have diagnosis of CFS, ME, fibromyalgia, depression, Alzheimer’s and have not had thorough screening for B12 deficiency?

Late last year I met Belinda Goldsmid, she and her family were chronically exposed to products of combustion, including carbon monoxide (CO). It was leaking into their home from a poorly installed and situated boiler flue. This had devastating health and social effects. Continual low level exposure can can lead to chronic ill-health, poor mental health and extremely debilitating symptoms.
Belinda is now experiencing phenomenal improvement of her previous debilitating symptoms with the use of B12 (hydroxocobalamin) injections. Following this, Belinda asked for my help in finding research papers documenting the use of B12 as a treatment for toxic exposure, including the silent killer carbon monoxide.

Maybe the origin or the exacerbation of your B12 deficiency can be traced back to toxic exposure?

For more information please see our new page, www.b12deficiency.info/b12-the-antidote

Belinda was helped by the charity CO Gas Safety, you can find more CO charities here.

If you think you might be B12 deficient the What to do next page is your starting point.

If you want to learn more about B12 direct from Sally Pacholok please see our Conference page

 

When rich charities deliberately back the wrong horse, something fishy must be going on….

Do you donate to the Alzheimer’s society?

Has B12 and folate helped your declining memory like it did mine?

Not all of us have these particular symptoms. Those of us who do and have B12 injections and correct folate supplementation regularly enough to help repair the nerves of brain, are proof of the fact that our cognitive decline has halted with this inexpensive treatment.

We as patients are largely ignored on this issue, and so are the scientists who report the same.

Read what Jerome Burne has to say on this issue ;

http://healthinsightuk.org/2015/08/06/policy-on-alzheimers-sure-we-want-a-cure-just-so-long-as-its-not-cheap/

‘Do you believe there is a new drug for Alzheimer’s just over the horizon? That there is no truth in the popular idea that B vitamins might cut your risk of getting this dreadful disease?

Well you are wrong on both counts but it’s not your fault, you’ve quite reasonably fallen for some very sophisticated marketing. Let me explain.

You will be amazed at how tiny the benefit a drug needs to have to be hailed as a breakthrough and how ruthlessly a smokescreen of shoddy trials can be used to obscure the truth about the potential benefits of B vitamins.

This is not biased ignorant pharma bashing; it’s a reasonable conclusion from what has been happening. For instance, compare the enthusiastic way a new drug is greeted, with the low key response to research showing that cheap vitamins might do the job.’

….and what Margaret McCartney has to say; http://www.bmj.com/content/351/bmj.h4064

This is no breakthrough. How did this paper score such extraordinary publicity?’

If you want to learn the truth about B12 deficiency please consider joining us at the conference; http://www.b12deficiency.info/conference-2016/

A couple of research papers for you too;

Cognitive impairment and vitamin B12: a review.
http://www.ncbi.nlm.nih.gov/pubmed/22221769

Relationship of cognitive function with B vitamin status, homocysteine, and tissue factor pathway inhibitor in cognitively impaired elderly: a cross-sectional survey.
http://www.ncbi.nlm.nih.gov/pubmed/23042212

 

Best wishes

Tracey

Go away and die quietly, we’re busy

It is rare that I am lost for words – however, I expect after reading this, you might be struggling too.
The below text is a summary of a patient’s experience just last month. I am paraphrasing but the message is very clear. The quality of life of B12 deficient patients, at least to some doctors, simply doesn’t matter. Their pleading for help falls on deaf ears at this particular practice.

Are you sitting comfortably?  Here we go –

We had a meeting about treating your ‘normal’ serum B12 level of 334 with B12 injections but have decided that even though you tested positive to parietal cell antibodies years ago, that you are;

HEAVILY SYMPTOMATIC and can demonstrate that your;

7 cardiac arrests, 
One major heart attack, 
Pulmonary embolism, 
Over TEN lengthy stays in psychiatric hospital with added ECT treatment, 
A lifetime of complete exhaustion, 
Diagnoses of PND, CFS, fibromyalgia, ADHD, bipolar disorder, and, wait for it, – ‘Treatment resistant depression’ could all be directly related to B12 deficiency –

WE CANNOT POSSIBLY TREAT YOU WITH A HARMLESS, LIFE GIVING VITAMIN B12 INJECTION THAT YOU DESPERATELY NEED. 

We have decided that although we prescribe many chemical ’off license’ drugs to hundreds of people, including you, at this practice (and mainly to those patients with poor mental health), without batting an eyelid, that we cannot prescribe B12 injections to you because it would be considered to be ’OFF LICENSE’ and we might get slapped wrists.

We as a practice, are all sticking together in this so you have NOWHERE to go even though you have shown us there could be great risk to your health without B12.

We have completely ignored the NEQAS report you gave to us; 

http://www.ukneqas-haematinics.org.uk/content/News.asp?id=46
False normal B12 results and the risk of neurological damage (Please click for details)
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

We have ignored the all the journals backing up your research.

We have also ignored the NHS website stating that many B12 deficient patients have within range results due to the inaccuracy of the serum B12 test;

http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Diagnosis.aspx
‘A particular drawback of testing vitamin B12 levels is that the current widely-used blood test only measures the total amount of vitamin B12 in your blood. This means it measures forms of vitamin B12 that are “active” and can be used by your body, as well as the “inactive” forms, which can’t. If a significant amount of the vitamin B12 in your blood is “inactive”, a blood test may show that you have normal B12 levels, even though your body cannot use much of it. There are some types of blood test that may help determine if the vitamin B12 in your blood can be used by your body, but these are not yet widely available.’

Instead of giving you HARMLESS, LIFE GIVING, B12 injections, we would rather you continue to take the countless, expensive and harmful drugs which we are completely happy to prescribe for you, despite your protestations that they don’t work. 

We are also completely happy with the labels we have given you, despite them being common misdiagnoses of vitamin B12 deficiency. 

We are rigid, we cannot muster any compassion or understanding and won’t do our own research, we simply can’t be bothered. We don’t care that you merely exist, have been chronically ill for decades and live less than half a life.

We do hope you understand our position? 

Now, can you run along and stop wasting our time? We are very busy and very important GP’s. We have lives to save, don’t cha know?
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Well what the hell do you do with that??

This patient is someone I know. I went to one shocking appointment with them.

I am completely astounded that this patient has the capacity to continue with life despite the trauma, pain and neglect they continue to endure.
This patient deserves care, compassion, understanding and B12, and quite frankly, an enormous medal!

During the appointment I attended, we challenged the GP when it was stated that, for this patient, B12 injections would be ‘Off License’.  There was no budging this unfeeling, uncaring, unknowing, cardboard cut out.

Can anyone enlighten me as to why or how b12 injections can be considered ‘off license’ for a heavily symptomatic B12 deficient patient?

Can anyone from the medical profession explain why exactly, patients have to jump through hoops to achieve a diagnosis of vitamin B12 deficiency? The current rationale almost completely ignores symptoms and decides everything on a blood test which is proven to be inaccurate.

Why is it that other conditions have no diagnostic blood test and yet the GP and specialist are completely confident in diagnosing based upon symptoms alone?

How can any clinician feel comfortable diagnosing ‘lab test free’ conditions such as Fibromyalgia, bipolar, schizophrenia, CFS, ME, Parkinson’s and Alzheimer’s etc, without fully and I mean FULLY, ruling out vitamin and mineral deficiencies? It just doesn’t make any sense.

There is something gravely wrong here and this horrendous, cockeyed situation has to come to an end soon, surely?

Although some of us have GP’s who treat us well for B12 deficiency, the shocking case detailed here is not isolated and is a tale to be continued……..

If you too are fighting complete ignorance please find support here;
https://www.facebook.com/groups/174928999276739

If you think you may be deficient please use this page;
http://www.b12deficiency.info/what-to-do-next/

If you want to help us to cut out the middle men who don’t, or won’t care – please sign and share and shout about this petition to help us treat ourselves –

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

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

See below for more information on the common use of ’unlicensed medicines’.  A particular worry is that Metformin is being used for the treatment of urticaria as well as PCOS. I wonder if these prescribers are checking their patient’s B12 levels since this drug drags them down by stopping B12 absorption from food? I bet they’re not.

http://www.nhs.uk/Conditions/Polycystic-ovarian-syndrome/Pages/Treatment.aspx

Metformin isn’t licensed for treating PCOS in the UK, but because many women with PCOS have insulin resistance, it can be used “off-label” to encourage fertility and control the symptoms of PCOS.

http://www.ipswichandeastsuffolkccg.nhs.uk/Portals/1/Content/Members%20Area/Clinical%20Area/Medicine%20managment/Drugs%20and%20Therapeutics%20Advisory%20Group/Share%20care%20agreements/Valprorate.pdf

Preparations available and licensed indications
Valproate is available in the UK as sodium valproate (Epilim), licensed for epilepsy and semisodium valproate (Depakote), licensed for the acute treatment of mania.
Even though, neither formulation of valproate is licensed for use as a mood stabiliser, there is a significant body of evidence supporting its use.

B12-life-web