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!

 

Have you been told to shut up about B12 deficiency?

Something happens to people who discover they are B12 deficient, it seems that an internal switch has been flicked and it leaves you with an uncontrollable urge to tell everyone you know and even people you don’t know about B12 deficiency.

Sometimes this has a positive outcome, sometimes what you say falls on deaf ears and sometimes expletives are involved. You may even experience stonewalling from you doctor.

Your B12 spotting radar becomes highly attuned and when you see a child with a few grey hairs or someone mentions they have fibromyalgia you feel compelled to explain about B12 to random strangers.

People outside our shared experience don’t understand the seemingly obsessive and bizarre behaviour they are confronted with.

They think that your focus in every living moment is infused with B12 deficiency. They hear B12 deficiency blah blah B12 blah blah blah B12 blah blah……

Over the years I have driven my family and many of my friends (who I felt could be B12 deficient) completely bonkers to the point where they ridiculed rather than listened.

They switched off internally and in panic, this made me ramp it up even more.  To see the symptoms, know the family history and not say anything, feels like walking by a person dying in the street and not helping at all.

This situation is hard to take, especially when it’s someone you love who is ignoring your concern and you are simply asking them at the very least, to have B12 deficiency ruled out.

The thing is that not everyone is confident about asking for anything from their GP, most people wouldn’t dream of questioning a doctor or suggesting something to them, they might feel rude and disrespectful – and after all, shouldn’t the doctor know best?

Even though we might think we’re discerning and can spot a mile off where we think B12 deficiency is occurring, our friends and family think we think it’s everywhere and everyone has it, even the next door neighbours budgie.

We know that B12 deficiency is very common and due to a lack of education and commonly misdiagnosed, so it’s natural that you will sound like you think everyone has it.

I want to make the point that I don’t think everyone has B12 deficiency at all and that I’m fully aware of its shared symptoms with other common conditions, but I can’t help but say when I see a situation where I feel it should be confirmed or ruled out.

We were sat in traffic the other day and I saw a super market lorry go by it’s sides featuring an ad with a smiling model. I could see her swollen tongue, it’s sides were indented just like mine gets when I need my injection . So naturally, I want to find her and tell her to get checked .

A friend of mine who is type 1 diabetic and a solicitor, was struggling at work through total exhaustion, she also had numbness and tingling in her hands and feet which the GP had of course told her this was due to diabetic neuropathy. (Why wouldn’t he? He’s never been fully trained in B12 deficiency). I nagged her to get tested. I knew she wanted a family and I couldn’t bear the potential that her fertility might be affected.

I was so happy that once her results were in, the Practice rang and asked her to go urgently for her B12 injections.

My grandma had a diagnosis of PA but my mum, who to me had a multitude of symptoms, was attributing those she recognised she  had, to pre-existing conditions. This is of course completely natural but very frustrating for those who recognise themselves in the one they are trying to help.

Breathing difficulties can be put down to asthma, COPD etc,

Back pain to wear and tear,

Incontinence to pregnancy,

Depression to work or family situations,

Tinnitus to loud music or noisy work environments

IBS to stress  – I could go on and on, and of course these can all be factors – but, what if they all improved with the right frequency of B12 injections?

Very often it’s quite clear that undiagnosed B12 deficient patients don’t recognise their own symptoms, it’s those around them who see that they are irritable, apathetic, depressed, and it’s when we are so poorly that we don’t want to be told we might have a ‘condition’. Certainly not one that requires injections.

The person you are trying to help might feel picked on or pressured to do something that they simply can’t tackle and they may feel totally out of their depth in discussing this alien subject confidently with a doctor.

They may get angry when you mention B12, they want you to stop badgering them and they may well decide that the doctor must know best.

I suggest you keep your B12 radar on but perhaps only say “I think you should have your B12 checked” just twice and then leave it.

If you can.

It will be very hard.

You will feel like you want to explode.

You will want to shout from the top of your lungs.

I’m finally learning that sometimes less is more, although I do feel as though I’m fit to burst each time I’m confronted with somebody who has a tremor, mania, stroke etc and has not had B12 deficiency either confirmed or ruled out or who is only receiving three monthly injections it still gets me – really gets me, and I ramp it up again. I’m sorry, I can’t help it.

What is astounding to the newly diagnosed and correctly treated, is the incredible flowering of their personalities, the clearness of their minds, the lifting of depression and an all round improvement in their well being. Their renewed ability to move more easily and have stamina where they thought it had gone for good and it’s only then, when we sigh with relief that the nagging – (even though it’s taken umpteen years), can stop because finally your loved one is safe B12 wise.

I have never managed to mention B12 just twice yet – but I am working on it.

The message is never give up, keep your B12 radar on but use your judgement on how far you can push it with your friends and family. At some point (and it may be years in the future) they will be grateful for your persistence.

So really this post is an apology to anyone out there who has wanted to gag me, but it’s also a message to everyone like me who does this – that we want everyone we’ve driven to distraction, to know that all the nagging comes from a place of love and care.

It’s also a thank you to Damian, who has never once told me to shut about B12 deficiency and helps this cause immensely.

And for all those who can get their loved ones to read this post – they may want your help in getting to the place where you are.

Wishing you all the very best.

Tracey x

 

Sally Pacholok mentions this phenomena in Could it be B12? An Epidemic of Misdiagnosis

Pat Kornic’s open letter may help to share with your families too.

A huge thank you to Dr Marjorie Ghisoni, who gets what I do and why I do it! Read here.

If you think you may be B12 deficient PLEASE DO NOT supplement before testing. Please see this page and use it as your crash course!

 

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?

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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