Parliamentary and Health Service Ombudsman

[ClaireWF1346]

Good day all. I have finally found the emotional strength to submit a complaint request to the Parliamentary and Health Service Ombudsman about the service I received/am receiving from my surgery this year. Not only did one locum fabricate things about me and portray me as somebody obsessed with getting a pernicious anaemia diagnosis and refusing to listen anything else...but the wider issues I have included are:

- prescribing oral B12 after just six loading doses, despite new symptom of dizziness, tinnitus and more

- no neurology referral despite several worsening neurological symptoms

- no investigation into WHY I had developed B12 deficiency at the age of 40

- current refusal to allow my to have blood tests to check folate, ferritin and vitamin D, despite having a letter from the Cambridge B12 specialist to state this is important and needed

- the surgery trying to "sneak in" a B12 test to the co-factors blood test they did agree to provide

I just wanted to share this really. A few members on here are already aware that I've been brewing this for a while but it's taken so much emotional strength to address this as it causes me anxiety to look back into it all. Now that I'm feeling much better, it's actually terrifying to look back at how unwell I was.

Has anyone had any experience of the health Ombudsman? I've lost all faith in the system so they will probably come back to say they can't help me, but I'm trying to raise awareness and increase their patient care for their future B12 deficient patients!

[Nackapan]

Well done you 👏 So pleased you've done this .

I've challenged along the way too.

It's scary looking back.

Hope you get heard

[ClaireWF1346 in reply to Nackapan]

Even reading my initial to complaint to the surgery took me back to the fear and desperation I felt. I just wanted help. If I hadn't come on here and found the support and guidance needed I would probably be unable to get out of bed now.

[Nackapan in reply to ClaireWF1346]

Yes. I'm not even sure how I found this forum as so ill at the time and bedbound .Never been on face book or any forum before.

I've got copies of all the letters ive sent.

I'm not able to access them on my NHS app now.

'Limited access ' when had to change G.p surgery.

( old one closed)

It's been a yesr since I requested my medical notes.

Big chunk. Over 30 years missing.

Still waiting.

M.p gave two letters 'lip service ' from an admin.

Posters taken but never put up or indeed looked at .

Most receptionists have marked me as a trouble maker .

It's so ridiculous when all I wanted was to receive the right treatment.

Also for symptons to be acknowledged as real.

Not 'in my head '

Not due to stress

Not due to me refusing to the antidepressants as nog clinically depressed.

I once pointed out how strong emotionally i am to deal with them.

Do take care of yourself with this process.

It is very difficult.

You shoukd feel better by acting on the injustices you've recieved.

[ClaireWF1346 in reply to Nackapan]

"It's so ridiculous when all I wanted was to receive the right treatment" - pretty much sums it up! None of us want to be battling GPs and surgeries, but it's out of necessity and desperation. I am sure I am (or soon will be) marked as a troublemaker. Just glad I have the severe B12D diagnosis letter from the specialist on my record as they can't (factually) argue with it.

They have also recently mis-diagnosed me with osteoarthritis and only because I was persistent by going back and explaining my symptoms are not of OA but of psoriatic arthritis (which I know now has a proven link to B12D) I have seen another person who has actually referred me to rheumatology. Meanwhile, my joint pain increases...

[wedgewood]

Sorry I’ve no experience of dealing with that Ombudsman . Congratulations to you for doing that . You deserve all our support . If you are a member of PAS. , you should be able to get tips from them on dealing with your case .

I wish you plenty of strength . Very best wishes . .

[ClaireWF1346 in reply to wedgewood]

I am a PAS member and their advice factsheet states to complain directly then to the Ombudsman if unhappy. Slightly more difficult for me as I don't have a PA diagnosis but severe B12 deficiency should be treated in the same way. Fingers crossed!

[Myoldcat]

Well done Claire! So many of us here can empathise with you, and admire the strength of purpose needed to take this step, when one is so physically and mentally unwell and exhausted. I hope you get a positive response to your complaint about such outrageous behaviour.

[ClaireWF1346 in reply to Myoldcat]

Thank you 😊 I still can't believe a medical professional stooped so low as to fabricate things about me on a personal level. Feels very fishy to me that my appointment with her is the only one in my adult life that has no medical notes made. Despite all her alleged concerns about me having MS or some other condition. Anyway...now we wait!

[Myoldcat in reply to ClaireWF1346]

That certainly is fishy... I suppose we like to think that all our doctors are bound by a higher ethical if not moral code, but some of them seem keen to cover their own backs at the expense of their patients and the truth.

[ClaireWF1346 in reply to Myoldcat]

Exactly. Especially with the job I've just walked away from, I know a lot about codes of ethics and assume GPs are bound by similar ones! "If it's not written down, it didn't happen" was the mantra in my job training! A**e covering, basically. I did read something on the GMC about the quality of medical notes required but hopefully the Ombudsman will know more about those.

[Myoldcat in reply to ClaireWF1346]

Well I hope they have met their match!

[ClaireWF1346 in reply to Myoldcat]

Down, but not out 💪

[deniseinmilden]

So well done to you!

I feel like you are doing this on behalf of all of us in a way, and thank you!

I hope the Ombudsman is more helpful than the Drs!

[ClaireWF1346 in reply to deniseinmilden]

I am really! So many on here have the same issues, especially recently with so many people's injections being stopped. I feel like Alan Bates vs. Post Office 😁

[Cherylclaire Forum Support]

Sorry, I've no experience. I just wanted to add my support, Claire.

There should be no need for anyone to have to do this. Just trying to get symptoms under control is exhausting enough, even with help - but a fight to get access to that help on top ?

Good for you for taking this on, and hope someone here has some tips and advice for you.

Please let us know how you get on.

[ClaireWF1346 in reply to Cherylclaire]

I will keep the group posted! The automated email says they will reply within 5 days to let me know if they will take it on...so we'll see. I won't hold my breath! Totally agree. I'm not considered vulnerable and I'm feisty enough to stand up for myself but I really worry about others who implicitly trust medical professionals (as we should be able to) or are too vulnerable for other reasons to realise they aren't getting what they need.

[mickeymouse42]

An advocacy service that helps you with your complaint might be useful; your local Healthwatch should be able to point you at one in your area.Before you get to the PHSO, the complaints team in your local area should have addressed this. Did they act on the letter from the Cambridge doctor?

[ClaireWF1346 in reply to mickeymouse42]

I did look at the advocacy service before I submitted to the PHSO but when I entered my postcode it told me they don't cover my area. The reply to my complaint from my surgery states that if I'm not happy with their response, I should contact the PHSO, and this is the PAS advice too, so I followed that advice. There is a Healthwatch service for my area though, so if the PHSO route fails, I will follow that one! Did my surgery act on the letter from Cambridge? They agreed to provide B12 ampoules on prescription (for now at least) but are now refusing monitoring blood tests, despite the letter stating I will need these to keep ferritin, vit D and folate in the correct ranges.

[mickeymouse42]

NHS England used to handle complaints about GPs but they seem to have passed it on to ICBs: england.nhs.uk/contact-us/f.... Have you contacted your local ICB?

GPs are advised (by the Vitamin D guidelines) not to "routinely" test Vitamin D unless the patient has a known bone metabolic disease (e.g. osteoporosis). Have you ever had a Vitamin D test? I see that you have psoriatic arthritis which seems a good reason to have one.

The Vitamin D guidelines unfortunately don't take into account that the cost of a Vit D test (NICE estimates £19) is far less than the cost of a GP appointment; making blood tests far more accessible on the NHS would save lots of pointless GP appointments where they refuse tests.

Have you considered just buying the tests yourself? A Vitamin D test costs £33 here:

onedaytests.com/products/vi...

Unfortunately I imagine there's probably a long wait before the PHSO will process your complaint.

[ClaireWF1346 in reply to mickeymouse42]

Actually, the PHSO have already replied to tell me they've created a case for me, so hopefully not too long. I'm not really worried about the time it takes as I'm out of the woods now thanks to self injecting. Vitamin D testing is the least of my concerns! I've had several vitamin D tests via my GP in the past 11 months. Like most of the UK population my levels have always been low but I'm supplementing now. Folate and ferritin are the ones I'm concerned about (but they all need monitoring during B12 injection treatment). My folate was as low as 4 in February and >26 in July so this needs checking now my supplementation has been reduced. The importance of this is all in the letter from the specialist, stored on my patient record at my surgery.

I have not taken up any GP appointments asking for these tests as correspondence for these kind of requests is via messages at my surgery.

[mickeymouse42]

It seems astonishing that you cannot get a Folate test - it's far cheaper than a Vitamin D test.

I hope things work out for you - it should not be this difficult.

[ClaireWF1346 in reply to mickeymouse42]

It's actually this recent issue that has spurred me to complain about the issues I had in March and overall with my surgery. I had mentally parked it. I asked for these follow up blood tests on 18th October as it was 3 months since my last ones/changes to my supplementation. They first told me if the specialist wrote a letter they would allow them. I directed them to the sentence in the letter they already have that states this. Then "we will discuss at our clinical review meeting and get back to you within a week". 9 days later I followed up and "we still haven't discussed it". Still no word as of today. Patient care = zero.

[Sleepybunny]

Hi,

I haven't had experience of health ombudsmen in UK. Thank you for having the courage to raise your complaint and I wish you good luck with it.

I hope others will be inspired by your example.

PAS (Pernicious Anaemia Society) might be able to offer some support if you're a PAS member.

pernicious-anaemia-society....

pernicious-anaemia-society....

The person who runs B12info.com might be interested in your story.

b12info.com/

Links here for anyone reading this thread who wants to know more about making a complaint.

Patient Association article about NHS complaints

patients-association.org.uk...

Parliamentary and Health Service Ombudsman (PHSO) - England

ombudsman.org.uk/

PHSO have leaflets explaining the process.

ombudsman.org.uk/publicatio...

Public Services Ombudsman Wales

ombudsman.wales/

Scottish Public Services Ombudsman (SPSO)

spso.org.uk/

Other useful info for UK forum members in this thread about Patient Safety.

healthunlocked.com/pasoc/po...

This thread might also be of interest.

healthunlocked.com/pasoc/po....

[ClaireWF1346 in reply to Sleepybunny]

Thanks, Sleepybunny. I am a PAS member and read through their information before submitting my complaint. I don't have a PA diagnosis though. I will see what comes of my PHSO complaint and reach out if I hit a wall. Once I get going, I'm like a dog with a bone!

I will drop the B12info lady a message though as she's currently doing a PhD in the barriers to diagnosis and treatment of B12 deficiency, so this might make a useful research tool for her!

[Hockey_player]

I hope you get more B12 injections and the other tests you need! As to the "why" for pernicious anemia, I think most of the time it is hard to unearth that. The critical thing is to get the B12 injections you need to avoid damage to your body.

[Hockey_player]

The critical thing short term is to make sure you take care of your self. The health care system appears mostly broken over there for PA patients. That is why so many are self-injecting and you may have to do that as well. Very best wishes.

[ClaireWF1346 in reply to Hockey_player]

I have been self injections EOD since April - I can't imagine how unwell I would be now if I'd blindly accepted the B12 pills from my GP. After 7 months of injections and co-factors, I'm at a place where I can live a fairly normal life. Back at the gym, socialising, working part time. I still need a nap when I've overdone it or those sleepless nights come back but none of this healing can be attributed to my GP. Is the situation better in Canada?

[Hockey_player in reply to ClaireWF1346]

I have a great family doctor. But many people here do not have one. I don't know how easy it is to get the right treatment. One major advantage here is that injectable B12 is available here over the counter with no prescription and it is very inexpensive.

[ClaireWF1346 in reply to Hockey_player]

I'm glad to hear you have that support! I did fight for B12 on prescription so it's £9 for that (55 vials each time) but they will probably stop that if my complaint does get through the channels to them...

[Hockey_player in reply to ClaireWF1346]

Other people get their B12 from Germany. There is info on this forum about that in case you have problems keeping your prescription. Best wishes!

[Hectorsmum2]

I would personally prefer to seek legal redress than go through a government body. There are soliciter firms advertising for pooly treated B12 deficient people. Well done for taking some action however and i wish you well.

[ClaireWF1346 in reply to Hectorsmum2]

I'll see what happens with this route and look at other routes if this comes to nothing.