I met Jane Ellison MP in Parliament last week…..

Jane Ellison, Public Health Minister and two advisors kindly spent time listening to the issues facing B12 deficient patients when I met her along with my own, very supportive MP, Nicky Morgan.

I chose to petition Jane as her ministerial responsibilities include; dementia, diabetes, children’s health and school nursing, long-term conditions, health visiting, NHS health checks, preventing avoidable mortality etc. All these categories and more relate to B12 deficiency.

Surprisingly Jane Ellison said that in three years in post she hadn’t heard anything about B12 deficiency and therefore all that I delivered was new to her!

I spoke about the 18,000 odd signatures on the B12 OTC petition, (this asks for our B12 to be made available to purchase over the counter from pharmacies, to bring us into line with so many other countries)  each time it’s signed an email is sent to both Jeremy Hunt – Secretary for Health and Dr Sarah Wollaston; Member of the Health Select Committee.

I spoke about my own personal experience of B12 deficiency and why I feel that both petitions are so vital to the lives of so many who are as yet undiagnosed and those who are currently under treated. I spoke about the 20,000  visits per month to my website of which over 50% are from the UK.

We are all aware that this is a worldwide problem and not just a whine from a disgruntled handful of patients.

I was not allowed to take a paramedic to the meeting with me who would have relayed that around 80% of the calls she attends to are made up from those ‘at risk’ groups; elderly patients who fall, mental health patients, and patients with chest pain.

I also spoke about the petition I have addressed to Jane Ellison herself (to add screening for both B12 and folate to be added to a full blood count) and I left her with some of the many comments left by signers who detail their own delayed diagnosis or misdiagnosis of B12 deficiency. I also spoke about the low reference ranges of the serum test and of the need to treat patients by symptoms.

It remains to be seen whether or not she is convinced that we have a problem.

Jane Ellison will however, follow in many of our footsteps and write to NICE and to the RCGP and other NHS departments following our meeting. Perhaps a letter from a Minister will make the difference?

I will update you when I hear anything.

I know that so many UK patients have met with or written to their MP’s and to NICE and frankly, to anyone else they can think of who may have either clout or heart.

I hate to ask you again – but for those of you who can muster the energy to contact your MP, please ask them to raise the issues and concerns you outline with both Jeremy hunt MP and Jane Ellison MP then perhaps we can help them to understand the strength of feeling that patients have and the desperate need for change?

If you have already done this, could you please make sure your MP has forwarded the information onward too?

Thanks to all of you who have already emailed me the names of your supportive MP’s. My MP Nicky Morgan will have contacted them – it doesn’t mean they have engaged unfortunately but you could ask!

If we all work together on this, we can make a difference.

Al the best, Tracey

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10 thoughts on “I met Jane Ellison MP in Parliament last week…..

  1. Catherine, if you see my comments above, I think it could be useful to try and run a session at next years Annual GPs Conference, with B12 Patients involved, and possibly run a stall. I have been at the last 2 Annual Conferences and I think standing outside with placards etc would not be very productive. There would be a tendency to dismiss you as cranks. I think writing to MPs etc would be useful, as it needs to be tackled seriously, with appropriate evidence.
    Tracey, when people buy B12 over the counter abroad do they do their own injecting and is there training for that.

    • Hi Alison, I think some patients are lucky enough to be shown by a nurse or GP who supports their self injecting due to the restriction on treatment they feel they can give but sadly I think most feel they have no choice but to teach themselves or are shown by other patients in support groups who find themselves in the same boat.

  2. Tracey,
    You may already have similar plans, but how about if we find out about any useful meetings – eg the annual GPs conference, then put out a call for any B12-ers in the area to consider going along, standing outside, waving posters, signs, giving out leaflets etc/ Just generally causing a stir and drawing attention to the still mainly hidden issue.
    The GPs I’ve consulted in my area seem to know literally almost nothing about pernicious anaemia.
    Keep up your great work.

    • Hi Catherine, I tend to agree with Alison’s comments on this. If we could get patients listened to at the annual conference it would be a huge step forward. Yes there is a huge lack of knowledge and sadly it is even worse when the patient who’s B12 deficiency is not caused by PA is told that their deficiency is not serious and can be treated with tablets! Quite bizarre when the symptoms and damage caused is exactly the same.
      Thank you for your kind words! Tracey

  3. Is there a basic form letter to MP that I could use then add the details of my experience and the damage I sustained due to late diagnosis and inadequate treatment.
    Also how very debilitating this condition is which in the long run causes puts more pressure on families and the health service

    • Hi Pauline, perhaps you could use some of this below but add in your own experience. Thanks Tracey

      Dear *

      Currently there is no screening for B12 deficiency for at risk patients, this can and does lead to misdiagnosis due to the lack of knowledge of the condition amongst healthcare professionals. There is a petition asking Jane Ellison MP to help to add testing for B12 and Folate to a full blood count to help tackle this; https://www.change.org/p/jane-ellison-mp-parliament-uk-add-testing-for-b12-deficiency-to-a-full-blood-count-help-to-stop-permanent-disablement

      Dennis Skinner and other MPs, have signed this petition;
      https://www.change.org/…/ian-hudson-please-make-our…? in support of UK B12 deficient patients who are unable to buy their life saving, Injectable vitamin B12 OTC. We cannot absorb B12 from food so injections are essential for life.

      Most countries around the world allow their citizens to buy this essential, harmless injectable vitamin without prescription, from pharmacies.

      Due to out dated NICE Guidelines and GP’s (and other health care professionals) lack of knowledge of B12 deficiency, many patients are restricted to just four B12 injections per year, even though the body needs B12 every day! This level of treatment is clearly nowhere near enough to maintain health and consequently many patients remain mentally ill, bed bound, cognitively impaired, and unable to work or look after their children.

      Please sign and show us your support;

      https://www.change.org/…/ian-hudson-please-make-our…?

      If you have the time to watch even the first 2 minutes of this film;

      You will see just how devastating the effects of B12 deficiency can be. It is an easily treated, serious neurological condition but patients are very often dismissed, neglected and labelled hypochondriacs.

      Just imagine the health care savings if you can help to make this happen.

      For more information on this very common neurological condition please see http://www.b12deficiency.info

      Yours sincerely

  4. Dear Tracey, I am a member of the National Patient and Carers Participation Group for the RCGP. The current Vice Chair of the College is also a member of our group, though I think he may be coming to the end of his term. We do have GPs on our group and can discuss issues which we as patients are concerned about. I have been thinking about how to raise the issue of B12 deficiency and its treatment in the group, but am unclear exactly what you want to happen. One thing I thought of though it’s too late for this year is to run a session at the annual GPs conference. It is held in October, but suggestions for sessions of which there are many, have to be in by the end of December. There are also stalls in the Exhibition area. It might be worth thinking about for next year. If there is anything I can do to help let me know.
    I am also concerned about the variations in what is considered ‘normal range’ in testing. I am assuming that CCGs would commission testing for their area. The bottom of the range in my local area is 110 ng/l and so many GPs just say ‘you’re within the normal range’. I ‘m not sure how it is possible to get more consistency and adherence to national guidance.
    I am glad that you have been able to at least raise the issue with the Minister.

    • Dear Alison

      I did discuss the reference ranges with Jane Ellison too and explained that almost all aspects of B12 diagnosis and treatment are problematic for patients.
      The lack of up to date education for health professionals, our restricted treatment & lack of screening in at risk groups, to my mind are the key things. The B12 serum test is cheap but has it’s limitations due to the low ref ranges but there is no gold standard test. Treating patients by symptoms and not results is key to tackling the incidence of misdiagnosis.

      If we could access B12 OTC this would change the lives of B12d patients who want to be in charge of their own healing, helping them to get back to health more quickly than they can presently. This would also serve to free up time in GP surgeries, as it does in other countries.

      In your unique situation, perhaps you can ask for advice from the GP’s who are the members of your group? I am sure there are many who wish to treat patients more frequently but feel their hands are tied. So far no one has been able to show me the clinical evidence for the maintenance dose of 4 injections per year – please see here *http://www.b12deficiency.info/blog/2016/02/16/uk-b12-deficient-patients-paltry-3-monthly-maintenance-dose-of-b12-injections-is-based-on-cash-not-care/ but it may be that many GP’s are unaware that treatment is based upon cost saving and not care for the patient?

      As you may be aware, I work with fantastic B12 expert Sally Pacholok who has been raising awareness for 30 years. She would be very willing to help educate those who want to learn! Her book Could it be B12?, the film “Sally Pacholok” and this documentary https://www.youtube.com/watch?v=BvEizypoyO0 featuring Dr Carr the misdiagnosed Paediatrician are all excellent tools for our GP’s if we can just get the door open!
      Please let me know if I can help, Sally is fully committed to helping in any way she can too.
      All the very best Tracey

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