As many of you know I opened a case with pals against the treatment or should I say lack of by a neurologist who simply gaslighted me by sticking an FND label on my files.
To cut it short I had a call from the case working to say the case was closed in the consultants favour - no surprise there when the system is so currupt.
I was somewhat perplexed at this news and told the case worker it had all been a waste of my time. To my astonishment I received an email last night from the organisation stating I had called the case worker a bitch - I would not and most certainly did not.
I was that annoyed I looked up the NHS ombudsman reviews which was quite an eye opener. Then I came across this which others might find of interest ...........
I had an appointment with a private neurologist and I had the same diagnosis. I asked them whether I could record the appointment. They said NO.
I am sure you did not call the case manager a bitch. It is natural to swear in times of frustration though. Oh whoops, I just had a Tourette’s moment.
It is a long journey to firstly be diagnosed and get adequate treatment. Then the complaint’s process can be long, tedious and off-putting.
Clinicians may become defensive and discuss the patient as a collective with notes being changed or growing legs and walking off.
Similarly, there are great doctors such as Stephen Bolsin. This is not P.A./B12 D related. He was a British anaesthetist and a whistleblower. He exposed incompetence at Bristol Royal Infirmary. This resulted in the introduction of clinical governance. However, because he was a whistleblower, he was unemployable in the U.K.
It is really complex and saddening to know that doctors can loose their livelihoods for simply doing the right thing.
I know and sympathise how you must feel being wrongly accused. It’s a horrible feeling.
1. Ask to listen to a recording. (Highly unlikely there is one but it shows your belief in your innocence)
2.if no recording politely suggest that this should change in the interests of both parties. Try to record yours in the future I record my consultations with or without their consent.
3. Put your denial in writing so it’s on the record - you never know this could be this person’s modus operandi and truth will be out if a pattern appears.
4. Ask for the process to be repeated ie speak to someone else as clearly the conversation was unsuccessful possibly due to the other person having hearing difficulties.
I have already asked to listen to a recording of where I am suposed to have called her a bitch.
The first ombudswoman who was appointed, twice whilst we were on the phone excused herself whilst she went down stairs to open the door to take in parcels for a neighbour ! She went off sick without even notifying her clients so my case was left in limbo until I chased it up.
The ombudswoman I am suposed to have called a bitch was a replacement for the other, I had only spoken to her twice over the phone. From start to finish I have received nothing in writing not even the outcome of the case. I can assure I am having to hold back my anger.
I acknowledge receipt of the appeal detailed in your 9 August email below and I will now forward the same to an appeal officer so that they can consider the restriction, the contents of your appeal and then make a determination on the restriction.
Whilst the appeal is being considered, the restricted contact arrangements will remain in force.
I also acknowledge receipt of your 8 August email.
Omg 😱 If people could've given them 0 stars they would have. How is that even possible? This is beyond duty of care, it's malpractice and corrupt it seems.
I think it will like flogging a dead horse. The odds are stacked in the NHS favour. Which is why I didn't go ahead and sue the NHS over my mother's death even though they were clearly negligent in letting a stoke patient eat unsupervised. What really annoyed me was whilst she lay there dying they tried to get me to fill in a patient satisfaction form. They don't care about patients anymore only stats.
I made a personal decision that my time/life is better spent finding ways for me to heal rather than try and change my relationship with those in the medical field.
I consider my relationship with the medical field to be an abusive relationship.
I do use them for some things. It is hard on me to voluntarily participate in the abusive relationship.
With B12 is made easier as out performing by self treatment is not difficult other than emotionally.
Many years ago I put in a complaint about my endocrinologist ( horrid man ). He basically put in my notes I was a waste of time and money ! ! ! Well that was like a red rag to a bull. Unknown to him I had just been diagnosed with hypoparathyroidism in Oxford.
In those day you had an independent lay person to support your case. I attended the hearing with the said consultant in attendance. We were all sat around a table He went red faced when questioned and made to put a covering note of appology for his incompetence in my notes.
So sorry to hear this Jillymo . I knew things were bad, but the ombudsmans report... sheesh! 😳I believe you when you say this isn't the end of the matter, but feel sorry you have to go through more of this. I, like so many on here know how mentally and emotionally exhausting this is at a time you're unwell.
What are your next steps? A word with your MP perhaps?
Are there any charities set up to address this you could also contact?
A very kind lady helped me to compose an excellent responce to the ombudsman in regard to accusation. I only emailed it yesterday and now waiting a reply.
What makes me cross is the fact since the case started I have had nothing in writing ! Everything has taken place over the phone so iv'e asked if the conversation was recorded.
My Mp is like a car sales. He is pretty good in the showroom but hasn't got a clue what goes on under the bonnet. 🤣
So glad to hear you've got support, but v worrying (but perhaps not surprising) they aren't willing to put things in writing. Love the MP description! 😄
Sorry you are going through that. This doesn't surprise me at all. My friend works at a hospital and she is terrified she is ever ill and in hospital care as says they really just don't care.
Ditto - Funny you should say that I have a friend who works at our local hospital who said exactly the same ! Wild horses wouldn't drag me up to our local hospital. 🐎 It was named one of the worst in the country.
If I am going to snuff it I shall do it in my own bed. 🛌
Just a thought. Are you able to change your GP surgery? I had a lot of issues in the past and fortunately I moved out of the area and signed up to a new GP who was great. He was able to tell me I had a B12 deficiency and from there I got treatment. Albeit not enough but it was the start to my road of recovery.
Perhaps a new Dr will take you more seriously with your ailments.
Constantly fighting will drain you physically and mentally. Sometimes we have to accept some battles we just won't win.
The issue in question was not Gp related it was an arrogant neurologist at my local hospital. I have multipal autoimmune conditions of which many consultants do not fully understand. Rather than address such a complicated case he simply labeled me with FND. 💐
Oh dear. That's not very kind at all. I hope you take some rest before you do battle with them again. I have experienced a not so nice consultant in the past and he said to me. You take antidepressants don't you. To which I seen red and stormed out of his office. I'm sure I valued him as a prick to his nurses 😬
Definitely search for some alternative medicines along side conventional for your sanity if nothing else.
I have had years of seeing *ricks and now quite used to their incometence. But with the FND label if I were in a medical crisis and it were simply passed off as FND it could cost me my life !
I have suffered heart failure, stroke / Tias and also have sticky clotting blood and this pilock come's up with FND. I have small vessel and lesions on my brain. It's all well documented in my notes and if FND is the best he can do then he shouldn't be practising. 🤬
This is shocking Jillymo !I'm so sorry you're being treated like this !!
I did get an inkling of how obstructive the medical profession when I tried to complain about B12 injections being stopped for many people during covid.
Didn't go as far as the ombudsman, but despite involving local MP ( who was VERY kind and supportive) the health board just shut me down .
Even the local press didn't print my letter.
The only letters published were ones praising the NHS.
I didn't bother to take it to the ombudsman because I could see that " Covid was King" and it would be used as the trump card to kill off any investigation.
I know this attitude applies to any complaint, and it's disgraceful !!!
I suffered heart failure. Whilst in A&E I explained to the young Dr I had an endoscopy appt in a couple of days time. He wrote it on the top of my notes before admitting me into hospital.
One of the Drs had seen endoscopy on my notes and assumed I had gastric issues. I were put on a gastric ward instead of cardiollogy ! ! ! 😱
I tried to raise a complaint but due to the seriousness of the incident they blocked every avenue.
You will never win against a doctor. They are protected by the NHS, their colleagues and nurses. No-one rocks the boat as they will be blacklisted and will never be employed by the NHS or private sector again. A friend's son in law was suspended for 6 months for a misdemeanour. The reason she gave me, told to her by her daughter, was not the reason he was suspended believe me. I've worked in HR in the NHS and that reason was not a suspension punishment, itxwas by far a worse case. He now works in Australia because he cannot work here. They have probably given him a wonderful reference hiding his suspension, or, given another less serious reason, so that he can go there out if the way so that they don't have to deal with him.
The NHS don't sack people, they move them around, passing the troublemakers to another NHS area or sideways. There are very few reasons for sacking in the NHS, looking at porn channels fiddling your timesheets (getting someone to clock you in or out or altering them physically), fiddling your expenses or hitting someone are the most serious. Mistreatment is very low down on the list.
My aim is not to get this consultant suspended it is to get the label of FND removed from my notes. The NHS are fully aware of this sort of gaslighting of patients which is carried out to lessen the number of patients on their books.
I reported my gp & rheumatologist. What a difference that made. I git up dates. Everyone in the gp practice was interviewed. Nurses receptionists. Surgery manager & of course the Dr himself. All passed flying Colours , except the Dr himself. He was the one that was neglectful & very rude to me. Got excellent treatment from him afterwardsKeep on don't put up with it. We pay their wages. They work for us, we don't work for them. That was my previous Dr. Have moved now, absolute mess at this new surgery so much do I have a Dr investigating why I was treated & spoken to the way I was. Shocking
I am sitting here now waiting for a Dr to call me as wants to talk over pain in the night. I asked for a telephone appointment.
This practice is so much worse compared to my previous one. One bad apple in there. How dare she talk to me like that. Keep on & on & on.
It is so difficult to get into a surgery these days let alone find a good one.
The trouble is once all avenue's have been exhausted they close the case ! No fear of me giving up I shall make the buggers work for their money if nothing else. 🤪
That's it my friend, keep at them make a pest of your self they will soon listen trust me bang on & on & on. Contact your local mp. They can help too, we'll some of them. Choose one carefully. I had my emergency appointment. Brilliant. Actually had a Dr with a sense of humour! We had a really good laugh. She checked my leg that I was in excruciating pain with. I told her what I had done. She said well done I am impressed. You done everything right. Said to her I know my body & have been dealing with all this for a long time so I know what to do. She replied its been a pleasure to meet you! I said exactly the same to her. I now have 4 more appointments in my diary! Said can I bring my bed. She replied of course I will also do your shopping for you, I replied oh good I will make you a list. Will you pay for it as well, She replied now that's going a bit to far 😅😅😅
We both laughed throughout this banter. I am home feet up on my recliner with a cuppa. What a day. AT long last this surgery are listening to me. The Dr I saw today is the one that is investigating my case as to why I got treated & spoken to like a member of her staff did. One bad apple turns the box bad. This new system of NHS app & askmygp which they will roll out across the whole country has lots of teething problems, It kept crashing on me. Lots of bad comments on it. Why oh why do they not make sure it's working correctly before going live!!! Keep on you got this. Luv & big hugs xx
Thank you Jillymo for posting this information. I have finally put in a complaint to PALs myself over a month ago regarding something quite similar and still haven’t heard back and suspect that either I won’t or it will be next to useless response. So your link has prepared me for the inevitable. I suspect I will receive a traumatising standard non-helpful to letter to my experience. I did contact Patient Safety commissioner and got standard reply of we can’t do anything. So I don’t think the Patient Safety commissioner can be contacted unless somehow as a patient community we get a legal professional to word a letter regarding b12 as a medication being withheld (and so causing deterioration of quality of life and irreversible damage or death) and use it as a basis for individuals to make a complaint.
What I am increasingly finding though is that private services for tests etc mean NHS cannot control the story of the situation entirely and in the event of multiple opinions places responsibility for decisions about health a little more in our own hands. I suspect just before NHS came into being decisions about health were taken by patients after seeking opinions rather than the situation today of being told what is happening without listening to patients. Failure to listen will cost lives and it’s a shame healthcare professionals are being trained to force everybody into a category along the FND route which probably trebles the workload on the already failing Mental Health services who won’t be able to get CBT to cure ultimately haematological or medical conditions!
The declined an answer to any of my questions . The neurologist was suposed to investigate my has apparently had 25yrs experience ? 🤔
The letter simply adds insult to injury which addressed nothing. I sent most of my day yesterday replying and attached the link I posted to the bottom of my email - stating there are many shortfalls in the system. They cant argue with that it made perfectly clear on their link. 😲
Hello Jillymo, Just came across your post. It is always a difficult decision to decide whether or not to complain in these circumstances but my specific recommendation is to put things in writing rather than talking to someone. This acts to remove any ambiguity as you have experienced plus you have a paper trail should you decide to go from a concern needing clarification to a formal complaint.
I know it takes a lot of time to write this sort of letter and it can feel very frustrating, particularly when, like most of us with B12D/PA difficulties we get so frustrated at this ridiculous system we have to negotiate. Yet another hurdle!
I have found the complaints system to be totally corrupt. Pals are a waste of time and the ombuds man/woman are useless.
They deliberatly held my case up by various liaser's going on leave for months which holds the case up. Then you are passed onto someone else where you have to explain all over again. Most conversations were done over the phone by rep working from home. The new rep accused me of calling her a bitch ! ! ! I did no such thing. My case was then suspended for 3 months which held it up once more. You are only given so much time before your case is closed so all this was very clever tatics.
The next step was to call me to say the case has gone in the favour of the consultant ! I asked for the case results in writing and I can honestly say they hadn't addressed any of my concern's.
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Fainted yesterday, very out of things but don't know why...what more care can one take? 
Where in the world are you?
Worth Going to Hematologist for B12 deficiency? (USA)
UK NHS - PA treatment & management experiences 
