Last resort

[may61]

Going to find out from my clinical commissioning group how my gp should be treating me Cos if he treating me as they recommend ?If he not then I want to know why Never heard of them before but seems the last resort cos tried everything else Having eyes tested this week and starting physio see what comes from them Neck and back of head really getting me down but know B12 injections help

[Sleepybunny]

List of CCGs

england.nhs.uk/ccg-details/

Your CCG might be able to tell you which B12 guidelines your NHS area is following . They might be able to tell you if the CCG is following the BSH Cobalamin and Folate guidelines or local NHS B12 guidelines.

Practice managers may be able to tell a patient what policy a practice is following. Not sure if its possible to submit a FOI request to a surgery about policies used.

england.nhs.uk/contact-us/foi/

Local NHS B12 guidelines can be found by an internet search, a search on localNHS website, possibly under haematology guidelines, a FOI (Freedom of Information) request to loacl NHS website or request to CCG or perhaps MP.

BSH Cobalamin and Folate Guidelines.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines.

Unhappy with treatment?

b12deficiency.info/b12-writ...

citizensadvice.org.uk/healt...

england.nhs.uk/contact-us/c...

HDA pct

hdapatientcaretrust.com/

A UK charity that offers free second opinions on medical diagnoses and treatment.

Your MP may be able to help finding out information if you've been unsuccessful. They can be good at getting answers from official bodies who are unable or unwilling to answer members of the public.

parliament.uk/mps-lords-and...

[may61 in reply to Sleepybunny]

Interesting

[JGBH]

Hi May61,

Would be most interested to know how you get on with your enquiries, as would many other members of the Forum, I am sure. So looking forward to hearing from you.

Very best of luck with this and hoping you'll find some help with your health issues.

[Hillwoman]

Good luck May61. I've just emailed my own CCG to ask which guidelines they are following for treatment of PA and B12 deficiency.

[Foggyme Administrator]

Hi May61. Hmm...I looked into this and here's what I found...

Clinical Commissioning Groups consist of GP's from the relevant local health area so...the GP's you will be writing to are the ones who have no idea how to treat B12 deficency.

In terms of local guidelines that individual GP's work to - these are rarely up-to-date and each local area seems to have their own - they all differ.

I sent a Freedom of Information request to my local CCG and what I got back was a single screen print with one sentence 'Treatment of PA: 6 x 1mg loading doses of hydroxocobalamin then 1mg hydroxocobalamin every three months). No mention of B12 deficency (if PA not diagnosed): no mention of B12 deficency with neurological symptoms - no mention of intensive B12 the really. No mention of PA in the absence of macrocytic anaemia.

PA and or B12 deficency is very much a forgotten disease, local treatment guidelines appear to be hopelessly out of date, and it's not clear who (if anybody) is responsible for updating them (the ones I investigated clearly havn't been updated for many years).

GP's also look at something called 'GP Notebook', an online reference tool, so I took a peek (out of curiosity) to see what it said about the treatment of B12 deficency with neurological symptoms. No mention of B12 deficency: the only reference was to PA (albeit with neurological symptoms) and the treatment - 6 loading doses then three monthly injections. And we all know how wrong that is. To our cost.

And here's another thing: the chair of my local Clinical Commising Group is my GP - the very person who stopped my B12 treatment on the grounds that I had B12 'toxicity' and, incidentally, who failed to pick up the deficiency for 20 years - and then failed to treat it properly for four years.

So it seems that in my case, a GP was cast in the multiple role of judge, jury, and executioner. And it's likely that this is a pattern repeated again and again across the country.

So I think May61...if you ask your CCG how your GP should be treating you...they'll have no idea...and simply tell you want the local guidelines are - which are more than likely completely out of date (if they were up to date you'd be getting the right treatment because that's where your GP will be (or should be) looking for guidance).

And it's clear from what you've experienced and what we read hear that GP's really have no idea how to treat B12 / folate deficency or PA. And at the end of the day, the CCG is just another bunch of GP's 😖.

So here's something else you might like to try...

Write a letter to your CCG, explain your circumstances - that you can't get treatment, that you have neurological symptoms, that you're worried you may develop long term irreversible neurological damage etc. Then ask them to explain why you are not being treated in line with all the current guidelines. And best of all...include copies of all the guidelines with your letter. Ask them to arrange for you to commence treatment for B12 deficency with neurological symptoms - immediately. And if they're not able to do this...ask them to provide medical evidence to support that decision (they won't be able to because there isn't any).

You could also send the same letter to the Clinical Director of whatever health area you live in (it'll be on the health authority website) and to NHS England (again Directors' names will be on their website). If you do send to other bodies - mark all the letters that go our with 'cc'd to [insert the name of the relevant person] ...my goodness the CCG will give a collective jump if they see that others are being made party to thei incompetence (which they'll hopefully notice when they read the guidelines you send).

Anyway May61, these are just some thought and ideas that might (or might not) help. I'm going to copy and paste links to the relevant guidelines you'd need for this kind of approach at the end of this reply...just in case you need them...bet the CCG's never seen them...oh how I would love to see them squirm if they ever get to read this little lot 😖😇

Very best of luck May61...and I'd hazard a guess that there's not one person here who wouldn't love to know how you get on.... 😄👍

LINKS TO GUIDANCE

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

pernicious-anaemia-society.... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

👍

[Hidden in reply to Foggyme]

Andrew Lansley set up CCGs and abolished Primary Care Trusts and Strategic Health Authorities. CCGs are mainly composed of GPs with management support, but they are responsible for commissioning secondary and community care.

Because of the possible conflicts of interest GPs were supposed to be accountable to NHS England, and that is who their contracts are with. There has been some blurring of lines, but essentially GPs are independent contractors who are contracted by NHS England to provide a primary care service. So it should be the Area Team of NHS England who are responsible. Health Authorities don't exist now. I would go to NHS England.

[Foggyme Administrator in reply to Hidden]

Thanks Chris193. Was thinking of the new University Hospital Trusts rather than the older Health Authorities. Shame that didn't come out of the end of my fingers.

One of our forum members recently had a good result after approaching them.

Thanks for the detail about CCG's 👍

[may61 in reply to Foggyme]

That is very interesting Having tried everything else to get the correct treatment will have a go At the point now where I don't even feel I can look my doctor in the face ,cos had quite a few run ins with him ,and feel quite ashamed of myself in some respects Have looked at reviews of other local docs in our area, and they don't seem that much better On my last visit to him , middle of December to pick up fbc results , all my reports were on his desk from the neurologist, and TIA consultant There was one sheet waiting for me in an envelope, B12 results 1254, Stop injections ,cos had had 4 more loading doses 3 weeks previous ,so know he wanting to stop injections, although neurologist said to continue with them and why was he doing more bloods .Have got everything to SI and know it goin to be only course of action ,have tried sub linguals ,patches etc .Let you know what I find out Hey ho !!!!

[Foggyme Administrator in reply to may61]

Oh dear May61. You have absolutely nothing to be ashamed of.

'Tis your GP who should be hanging in shame 😱

By any chance....did your neurologist write to your GP and ask him to continue with B12 injections...and maybe increase the frequency to reflect guidelines for neurological regime. If not, might be worth asking...you could ring his secretary and ask her to organise a letter if you're not seeing him again. Worth a shot - excuse the pun 💉💉

Be proud of yourself...you've fought very hard, even while feeling so ill...well done you.

And if you have to resort to self-injection, well...join the club. Lots of help here if you need it.

Take very good care and let us know how you get on 👍

[may61 in reply to Foggyme]

Thankyou

[JGBH]

Excellent information Foggyme, thank you... but how depressing this situation is. Can you ever see this change?

[Foggyme Administrator in reply to JGBH]

I have to think and hope that it will.

Every GP that's educated and converted by one of us is a change in the right direction.

And people like Martyn Hooper and Tracey Witty are brilliant advocate activists, both doing fantastic jobs in terms of raising awareness, facilitating research activities and projects, and pushing forward with an agenda for education and change In treatment protocols and GP / medics awareness and training.

Several weeks ago we had three or four GP success stories (all after long battles) in a couple of days...and that was fantastic.

But there's something very odd...and badly wrong...with the notion of being pleased because three people had to fight so very hard to get the treatment currently prescribed in freely available guidelines. For those that look.

Bad. Sad. Ugly.

👍

[JGBH]

Indeed a very small victory but such a long way to "educating" GPs....Sadlly I think they are not that bothered. It's easier for them to give a "label" and some pills and tick "Job done" than pursue a proper diagnostic, which would take too long and probably would cost the NHS more. Furthermore the majority of gps do not like "Joe Public" to tell them what to do... I can assure you I have had some long and difficult discussions with my GP... she looked stressed, flushed and close to being angry (need to be careful she does not ask me to find another surgery which would cause added problems for me because of circumstances) and then she said "I am a gp working for the NHS and can't do more".... to which I replied " So we're both stuck"... she agreed. So where does that lead me and many others? Left untreated and with a deteriorating health, a scary future and it makes one feel extremely vulnerable and alone. Indeed Bad Sad and extremely Ugly.

Will attempt and re-post my post on the PA Forum section at one point.