Better late than never

[clivealive]

At last a response from David Lidington after our request that he attend a function held by Martyn Hooper this month.

Dear Mr P,

Thank you for contacting me about the diagnosis and treatment of pernicious anaemia. Sadly I was unable to attend the meeting on 1 November.

However, I realise it is important that patients suffering from pernicious anaemia receive a prompt and appropriate diagnosis. As you will know, pernicious anaemia develops gradually, and can cause a range of symptoms, which vary from patient to patient, and are often shared with a range of other conditions: this can make diagnosis at early onset challenging.

I know that the British Society of Haematology (BSH) produces guidelines, written by expert consultants and clinical scientists, providing evidence-based guidance on the diagnosis of haematological diseases, including pernicious anaemia. Their 'Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders' recommend cobalamin status as the first line diagnostic test, but also make it clear that there is no gold standard test for the condition and the clinical picture of a patient is the most important factor in assessing the significance of the test results. The guidelines were last updated in 2014: any adjustments to current best practice in the diagnosis and treatment of patients with pernicious anaemia, would be for the BSH to consider.

More general clinical guidance on the diagnosis and management of pernicious anaemia is also available from the National Institute for Health and Care Excellence.

Thank you again for taking the time to contact me.

Yours sincerely,

David Lidington

Member of Parliament for Aylesbury

At least he didn't suggest eating broccoli

[JGBH]

Thank you Clive. No no recommendation to eat broccoli.. but nothing signaling a positive important and much needed change in the way the medical professionals will treat or mistreat patients.

Clearly your MP did not write to the BHS suggesting they update their guidelines... so not really expecting any improvement in the diagnosis of people suffering from B12 deficiency or PA.

Thanks for trying nevertheless. Best wishes.

[deniseinmilden]

Well done Clive - at least he's now aware of the situation (assuming that he's seen his letter to you!).

I have an opportunity to meet with a couple of my MPs in a couple of weeks time and will speak to them briefly about it too.

[JGBH in reply to deniseinmilden]

Excellent idea. The more they are made aware the better the chance of anything being done to change this dire situation...

[NannaTV]

I just got the exact same letter from my MP!

[clivealive Forum Support in reply to NannaTV]

they are all clones down there NannaTV

[Polaris]

I met a small number of MPs during my life and was not impressed - their responses always seemed rehearsed and robotic.

It seems I probably lived near you Clive for 30 years. Whilst there, I wrote to my MP, John Bercow, about thyroid medication, T3 (now unavailable altogether) and, later on, the problems around PA/B12 def.

John Bercow was actually very concerned and bothered to write long, empathic replies and each time passed my letter on to health secretary at the time, Jeremy Hunt, who then sent the usual robotic response, passing the buck to NHS, England!

Seems JH is now on the rise, even though he was found not to have declared various health interests......

[clivealive Forum Support in reply to Polaris]

I think Mt Bercow is MP for Buckingham as well as Speaker but I agree the reply from Lidington didn't say a lot.

Hope you are keeping as well as possible.

[Cherylclaire Forum Support]

Your MP at least sent you something, however contrived and pompous. Me ? I'm still waiting for a reply to my e-mail or to my card with photo of latest self-portrait painting/mosaic on the front (hoping visual image might prod MP into caring) Oh well........ >sigh< ............ >deeper si...overlapping sigh< ....... sorry, folks, that was just one of my many symptoms.

Maybe I should've just sent a video of me sighing like a fish out of water at the supermarket checkout queue, with everyone turning round to laugh or stare at me - if words or paintings are not doing the trick, should we all do that instead ? Perhaps one mass response deserves another !

[EVMD]

Ha! I had the same response from my MP in Wales! Truth is, they don't care! Not unless it affects their seat in Parliament.

EVMD.

[clivealive Forum Support in reply to EVMD]

Seemingly so EVMD - perhaps we need a latter day Guy Fawkes to put a rocket up their ....

[EVMD in reply to clivealive]

I couldn't agree more!! Personally its a pity all sufferers couldn't collectively take up a class action (is that what its called?) and sue for malpractice!

I'm one of the lucky ones, my Diabetic Nurse prescribed it for me 4 years ago. My heart failure has gone from being classed as severely impaired, in 2016 to moderately impaired in 2018. The only thing that's changed in my lifestyle is B12 injections. Bit of a clue there eh? My niece and I are desperately trying to get her on it and she is being fobbed off every time.- its nearly 2 years now.

Can you tell me what are the implications of going to a private GP for this treatment (other than cost!!!) - can you keep your NHS Gp as well?

(You get the rockets, I'll get the Jackie Jumpers!!

Lovely to talk to you,

Regards

Eve. EVMD

[clivealive Forum Support in reply to EVMD]

I'm sorry I don't know the ramifications of having "two doctors" but I guess there would be no harm in trying your niece on some "over the counter" B12 supplements to see if there is any improvement. Presumably her levels are in the "NORMAL" (I hate that word) range.

You are right - a "class action" is where a group of "similarly affected" individuals club together in a legal challenge.

I am blessed in that my P.A. has been treated by injections for over 46 years - no need of fireworks at my surgery

[EVMD in reply to clivealive]

We shall have to start "Crowd Funding!"

My niece is one of the unlucky ones to be "borderline". Although she occasionally uses an oral supplement (? which) in the main she uses patches. I don't think they have much effect. We both use patches. Me to support my 3 monthly inj., E to give her some support. Sadly, over the last 3 years she has repeated blood tests after being asked to withdraw the patches to give a clear picture. This has happened at least twice now and each subsequent time, treatment has been refused. She has just been, yet again, with a repeat performance. All different Doctors. At least she is going to consult and "endocrinologist (not holding my breath!) with a view to MMA.

We are, not to hold back, gutted!! I am going to write to her Doc. (with E's permission. It is a waste to add anymore research but I shall try to be polite and appeal to her compassionate side!! (Emma says she likes this one!)

She has sent 2 brilliant letters, giving an insight into physical and mental state, (she has been taking Sertraline for 6 years!) , history, research and reasoning, to support her request. All to no avail. All I want to know is WHY! (I can answer that myself I think - being an old cynic!) What I don't understand is - why some Drs. are supportive like yours, and some are not- if it is strictly a no no from the Health Police! Is it discretionary?

This time though, I have picked up that in 2017 her RBC distribution width was 14 (upper limit) recently it is now 14.5. Oh, strangely enough, her thyroid is involved as well. Fancy that!

Clive alive - I have taken enough of your very generous time.

Thank you for allowing (??) my rant. Watch this space.

May I offer you my sincere good wishes and appreciation for all you do.

Regards

Eve.