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