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Film-maker urges review of treatment for deadly anaemia
Sophie Goodchild, Health and Social Affairs Correspondent5 Nov 2009
A film-maker is calling for an urgent shake-up in treatment for a life-threatening form of a blood condition.
Sufferer Mairi Sutherland, 45, is making a documentary to raise awareness of pernicious anaemia, a disease caused by vitamin B12 deficiency.
The independent director is warning that doctors are failing to diagnose the condition.
Ms Sutherland, from Rickmansworth, suffered from the disease for years but was only diagnosed in 2007. She says she has been left with long-term thyroid damage because of her late diagnosis.
On 26 November she is holding a fundraising evening at the Empire Leicester Square in support of pernicious anaemia patients.
Tonight, MP Madeleine Moon will call in the House of Commons for a review of how pernicious anaemia is diagnosed.
Reader views (10)
i'm a 15 year old girl and i was in stafford hospital for a week then i went to the doctors for blood tests and he found pernicious anaemia i have to have 6 injections for 2 weeks, i've had my 3rd treatment today and i'm having another blood test after my injections to see if i need more treatment. i must say my doctor was brilliant i've been ill since last septemeber and we can finally relax a little and we know what it is now. I cant thank my doctor enough for helping me.
- elisha bennett, england, 27/06/2011 18:36
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Hi, this is my story i am a 34 yr old woman who got diagnosed with PA seven yrs ago. My b12 level was 78 and the dr gave me one injection per month for three months then every 3 months. I never had a loading dose!!! idiot dr.
Anyway i am seven years later my spine pain is unbelievable i can hardly feel my feet i am constantly tired. My new gp has agreed to monthly injections but i fear the damage is done, i am about to lose my job. If there is a journalist out there please tell my story so it can help other
Tam 30/03/11
- tamie, england, 30/03/2011 20:23
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Dear Evening Standard,
I think out last contributor in the Pernicious Aneamia Debate ie Rogan Irving may have missed the point. Its is cler that a Review of the misdiagnosis and treatment of the disease is needed by the catalogue of mistakes being made by GPs on this matter as witness by the six other contributors to this article.
The UK remains behind in the treatment of the disease because it cant bring itself, based on cost to provide for the monthly injections that are given as of right in the USA, Canada and Australia. The treatment of PA here is out of date, and fails to match current international research findings on new methods of B12 absorption and doses, which are known to cure some of the damaged cause by misdiagnosis and frankly medical negligence.
Doctors play God and their last resort is to kill the patients they made mistakes with in order to cover up for their own malpractice. The correct treatment of PA will save countless lives and money because these patients will not go on to get the progressive sides of the disease which in turn cause the NHS yet more money.
Prevention in this case is part of the cure and correct testing of blood antibodies for PA is necessary as well as a new research programme for better form of absorbable cobalamin-B12 which as yet are only available abroad. What we need are doctors who will champion this new research and pledge allegence to their own hypocratic oath to save patients live not betlittle.
- Mairi Sutherland, London, 23/11/2009 22:19
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@Rogan, thanks for your concern! Pernicious anaemia ruined my life as a result of the failure of my GP to act upon a blood test which showed that I was seriously B12 deficient. Unfortunately, a very low B12 level is also present in serious alcoholics. My dear GP assumed that I was an alcoholic and left me to my fate. I developed an acute psychosis as a result of this and ended up in a psychiatric hospital unnecessarily.
Tell me again that this illness is of no more importance that other ailments.
- Jim H, London, UK, 16/11/2009 08:48
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I don't just feel cheated, I feel robbed of at least 7 years of my life. It took two years to dignose my Pernicious Anaemia and I have nerve damage, hypothyroidism and an adrenal problem as a result. As I use visual clues to stay upright, I fall over in low light and people usually think I am drunk. For years I couldn't feel my little boy's hair when I stroked his head. This is a horrible disease with horrible consequences for real-life people and for those of us who struggle with it every day, it is of huge importance. The treatment is cheap, yet so many of us struggle to get it - anything that publicises our plight and makes things easier is a good thing.
Peony
- Peony, UK, 12/11/2009 21:32
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I'm afraid that to die from any condition is as bad as it gets and this is what is happening to those with undiagnosed B12 deficiency. I have permanent nerve damage to bowel, bladder and leg and, had my problem been diagnosed earlier, I would not now be costing the NHS anything like what I now am, as well as having a better quality of life.
In my own case, it wasn't a lack of effort on the part of my own GP but rather an ignorance of this condition right through the entire NHS. However, in many people's case, there is not even a will to get to the bottom of their symptoms. Even when the answer is handed to the doctor on a plate, many of them won't even try this simple treatment and their patient then goes on to develop serious and permanent nerve damage.
Surely, when we already have an answer to so many people's symptoms, it isn't beyond the capability of the NHS to put together a checklist for GPs to consult when faced with a patient with many of the same set of symptoms.
- Andrea, Scotland, 09/11/2009 16:40
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"people are not being cheated of care and attention"
Please explain....... I was diagnosed with B12 Deficiency, Letter from Specialist please supplement this patient with B12 and Folic Acid. My Doctors overruled this saying " I don't care what Specialists say I'm your Doctor I'm not treating you". 3 mini strokes,fell over 7 times - slipping disc , and numbness in my feet,hands and pelvic area/ damage to my spinal cord and Demyelination. 4 years previous to that blood tests revealed I was anaemic totally ignored.
I feel cheated, I've lost two jobs and on incapacity benefit because my GP's knew nothing about Pernicious Anaemia. Oh! I forgot to mention that my mother and grandmother were both crippled with the same thing.
All I needed was injections costing £2.46 and Folic Acid costing 0.40p. How sad is that.
- Sallyann, uk, 09/11/2009 14:55
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Testing B12 levels is cheap and could be added to blood tests whenever anyone has problems with tiredness, yet doctors rarely do it. B12 injections are also cheap, and many people with problems due to low B12 levels could have their quality of life improved without costing the NHS much - in fact, probably less as they would visit the GP less often!
- Lorraine, Ttelford, Britain, 09/11/2009 10:23
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Mr. Irving, I think it would be of great importance to a young 13 year old Canadian boy who almost died because his doctor did not think to check for B12 deficiency. This would not have happened if our doctors were more aware of the symptoms of B12 Deficiency and pernicious anaemia. It is of great concern to me because pernicious anaemia/B12 deficiency is appearing more often in young children and young adults. This is reflected in the membership of the Pernicious Anaemia Society with the youngest member being 18 months old and who has a sibling aged three, both diagnosed with PA. It is not a disease that should be associated just with people aged 60 and older, the majority of our members fall within the age bracket of 20 to 45 years of age, this age bracket represents a period in their life when they should be most productive within the work-force. Instead, many of our members within this age bracket are unable to work because of fatigue, ataxia, breathlessness, inability to articulate and many other symptoms too numerous to mention here. Our doctors refuse to consider that these symptoms could be treated with more frequent B12 injections, which has been proven effective, over and over again as evidenced by our membership. Instead our members are told that the symptoms are all in their head orthat they are depressed and are usually prescribed very expensive anti-depressants. It costs my daughter 35 cents for a self-administered B12 injection.
- Pat Kornic Canada Delegate Pernicious Anaemia Society, Oshawa, Canada, 06/11/2009 16:19
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Every malady has long term effects, pernicious anemia is just one of them. Sufferers are not being 'cheated' of care and attention, one implication of governments 'reviewing how the disease is being diagnosed'.
Medicine is about excluding causes for problems and arriving at the most likely cause, and thus the (likely)most beneficial treatment. Sometimes this is obvious, and others it is not; sometimes it's effective, others not. It cannot be said - "They have this symptom, so they have that disease". It just doesn't work that way for the most part.
Something else that many fail to understand is that there is a difference between treating symptoms and treating the cause - symptoms are not necessarily exclusive to a single ailment (consider nausea, for an example, or even chest pain).
It's hardly surprising the lady has an interest in her own malady, and I wish her luck in her aims and in her treatment - it is just that in the grand scheme of things, it is of no greater relative importance than any of the other ailments the human race is subject to.
- Rogan, Irving, 05/11/2009 19:09
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