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It’s All In My Head

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Health Ombudsman Complaint - part 4

Part 4 of my complaint about my complaint to the health ombudsman… I have listed only a couple of the summary points at a time, so I can include my comments about them in the same blog post.

This is a long post, and involved me looking at the various guidelines in online medical sites as to what the correct response should be with someone with the symptoms I showed. It actually makes me somewhat angry and tearful as I had so many signs that the GP should have sent me for an urgent MRI (something I did not know could happen- I thought an MRI had to be via a consultant)

I also have a now friend who had the exact same tumour and operation as me, yet when she saw her GP she was sent for a CT scan THAT DAY and operated on a week later! Purely as her GP recognised the signs of a possible brain tumour- and apart from nausea they were pretty much the same as mine! To think your life is put in danger – probably partly depending on your GP surgery’s budget - is quite terrifying.

5) I believe Dr Milne did not write down my symptoms correctly, nor understand their seriousness, and should have referred me directly to have an imaging scan.

6) Why was my ENT appointment sent as URGENT (letter dated 27th January 2016 by Dr Brodie) yet when I finally got the appointment with neurology it was not sent as urgent, despite being about the exact same problems?

Point 5: On my medical notes it states than on 23rd March 2016 Dr Milne assessed my gait as normal. How can she have done this without adequate testing? (as point 4)

She also has written that I was ‘tearful and anxious’ which from latest research suggests it would also be related to damage in my cerebellum and I feel should have been taken as yet another symptom that I had a possible issue there.

In fact I had said to all the doctors that I felt I was going insane and was super anxious and felt my ‘fight or flight’ was on overdrive- as I felt it was related to whatever the problem was.

https://en.wikipedia.org/wiki/Cerebellar_cognitive_affective_syndrome “They reported that patients with injury isolated to the cerebellum may demonstrate distractibility, hyperactivity, impulsiveness, disinhibition, anxiety, ritualistic and stereotypical behaviors, illogical thought and lack of empathy, aggression, irritability, ruminative and obsessive behaviors, dysphoria and depression, tactile defensiveness and sensory overload, apathy, childlike behavior, and inability to comprehend social boundaries and assign ulterior motives” & “Levels of depression, anxiety, lack of emotion, and affect deregulation can vary between patients”

On the letter written to referral to the neurologist, she has written “may lose her balance if turns quickly”- when I would have probably fallen over if I turned quickly, even turning slowly I would lose balance, plus that I have “no visial disturbance” when on the letter than I gave her with my symptoms, before she wrote this referral, it clearly states multiple times that I was having visual problems (see evidence 1) and I had run through my symptoms when I was with her.

She also contradicts the point that I had ‘no loss of balance’ by writing “she does fall slightly to the left with her eyes closed” in her notes.

Also I would appreciate answers to my questions in my last letter to you as I feel these all relate for certain by the last appointment with Dr Milne:

I am not sure that you are reading the same NICE guidance as me? (Nice Guidance for suspected cancer of Brain and Nervous System)

As it says Consider an urgent direct access MRI scan of the brain (or CT scan if MRI is contraindicated) (to be performed within 2 weeks) to assess for brain or central nervous system cancer in adults with progressive, sub‑acute loss of central neurological function. [new 2015]

 

Surely I HAD sub-acute loss of central neurological function?

On: http://www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/overview_of_nervous_system_disorders_85,P00799/  

Signs and symptoms of nervous system disorders are:

The following are the most common general signs and symptoms of a nervous system disorder. However, each individual may experience symptoms differently. Symptoms may include: Persistent or sudden onset of a headache, A headache that changes or is different, Loss of feeling or tingling, Weakness or loss of muscle strength, Sudden loss of sight or double vision, Memory loss, Impaired mental ability, Lack of coordination, Muscle rigidity, Tremors and seizures, Back pain which radiates to the feet, toes, or other parts of the body, Muscle wasting and slurred speech

Of which I had: Persistent or sudden onset of a headache, A headache that changes or is different, Loss of feeling or tingling, Weakness or loss of muscle strength, loss of sight and blurry vision, Impaired mental ability, Lack of coordination, Muscle rigidity, Muscle wasting and slurred speech.

Or on: http://www.gpnotebook.co.uk/simplepage.cfm?ID=1905918027

It says to refer urgently patients with:

Symptoms related to the CNS in whom a brain tumour is suspected, including:

progressive neurological deficit, new-onset seizures, headaches, mental changes, cranial nerve palsy, unilateral sensorineural deafness, headaches of recent onset accompanied by features suggestive of raised intracranial pressure, for example: vomiting, drowsiness, posture-related headache, pulse-synchronous tinnitus or by other focal or non-focal neurological symptoms, for example blackout, change in personality or memory, a new qualitatively different, unexplained headache that becomes progressively severe, suspected recent-onset seizures.

Of which I had: progressive neurological deficit, headaches, mental changes, headaches of recent onset.

Accompanied by features suggestive of raised intracranial pressure: drowsiness, posture-related headache, pulse-synchronous tinnitus or unexplained headache that becomes progressively severe.

Or on: http://practicemattersmag.co.uk/article-full-reading.php?id_article=124

“When should a patient be referred to a Neurologist?”

It says for these symptoms how urgently they should be referred:

Upper motor neurone signs-

Cortical, cerebellar or brainstem signs: urgent (referral)

Vertigo

If accompanying earache, discharge, tinnitus or hearing loss: consider referral to ENT

If other neurological symptoms or signs: urgent referral

Which strongly suggests that I SHOULD have been referred urgently, and not at the 4th Doctor appointment, as routine.

On https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2593538/

‘Imaging patients with suspected brain tumour: guidance for primary care’ it says:

Headache with associated features

A recent review of the literature of headache with associated features found the following relevant positive likelihood ratios (likelihood ratio = post probability/prior probability) with 95% confidence intervals (95% CIs): headache with abnormal findings on clinical neurological examination 5.3 (95% CI = 2.4 to 12); headache aggravated by exertion or Valsalva-like manoeuvre 2.3 (95% CI = 1.4 to 3.8); headache with vomiting 1.8 (95% CI = 1.2 to 2.6); headache with focal symptoms 3.1 (95% CI = 0.37 to 25); worsening headache 1.6 (95% CI = 0.23 to 10); and cluster headache 10.7 (95% CI = 2.2 to 52). Another review has given rapidly increasing headache frequency 12 (95% CI = 3 to 48); headache causing awakening from sleep 98 (95% CI = 10 to 960); and dizziness or lack of coordination 49 (95% CI = 3 to 710).

With this table shown: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2593538/table/tbl1/

I HAD headaches causing me to wake from sleep, dizziness and lack of coordination, rapidly increasing headache frequency (from none in November 2015 to every day in March 2016), aggravated by exertion or Valsalva-like manoeuvre and worsening headache severity. On this chart I had the 3 most common symptoms of a brain tumour as well as others and yet the GPs didn’t feel it necessary to even refer me to neurology as urgent!

These top 3 symptoms (which I had) say they are FAR more likely than ‘abnormal neurological examination’ or ‘headache with focal neurological symptoms’ to show the risk of a tumour…yet your report seems to say that the doctors only took into account the abnormalities on neurological examination. How can these other things I had stated not be taken into account?

Recommended guidance for investigating for tumour in primary care.

• Red flags — presentations where the probability of an underlying tumour is likely to be greater than 1%. These warrant urgent investigation.

• Papilloedema

• Significant alterations in consciousness, memory, confusion, or coordination

• New epileptic seizure

• New-onset cluster headache (imaging, particularly of the region of the pituitary fossa, required but non-urgent)

• Headache with a history of cancer elsewhere particularly breast and lung

• Headache with abnormal findings on neurological examination or other neurological symptoms (although evidence base suggests orange flag)

• Orange flags — presentations where the probability of an underlying tumour is likely to be between 0.1 and 1%. These need careful monitoring and a low threshold for investigation.

• New headache where a diagnostic pattern has not emerged after 8 weeks from presentation

• Headache aggravated by exertion or Valsalva-like manoeuvre

• Headaches associated with vomiting

• Headaches that have been present for some time but have changed significantly, particularly a rapid increase in frequency

• New headache in a patient over 50 years

• Headaches that wake the patient from sleep

• Confusion

• Yellow flags — presentations where the probability of an underlying tumour is likely to be less than 0.1% but above the population rate of 0.01%. These require appropriate management, and the need for follow-up is not excluded.

• Diagnosis of migraine or tension-type headache

• Weakness or motor loss

• Memory loss

• Personality change

So if I had these signs below why wasn’t I given an urgent CT scan or MRI?

Red flags:

Significant alterations in consciousness, memory, confusion, or coordination

New-onset cluster headache

Headache with abnormal findings on neurological examination or other neurological symptoms (I could not do heel to toe test)

These orange flags:

New headache where a diagnostic pattern has not emerged after 8 weeks from presentation

Headache aggravated by exertion or Valsalva-like manoeuvre

Headaches that have been present for some time but have changed significantly, particularly a rapid increase in frequency

Headaches that wake the patient from sleep

Confusion

And these yellow flags:

Diagnosis of migraine or tension-type headache

Weakness or motor loss

Memory loss

Personality change

And on: http://www.nhs.uk/Conditions/Brain-tumour/Pages/Symptoms.aspx

Common symptoms of increased pressure within the skull include:

new, persistent headaches – which are sometimes worse in the morning or when bending over or coughing, persistent nausea and vomiting, drowsiness, vision problems – such as blurred vision, double vision, loss of part of the visual field (hemianopia), and temporary vision loss, epileptic fits (seizures) – which may affect the whole body, or you may just have a twitch in one area

and for the cerebellum – may cause balance problems (ataxia), flickering of the eyes (nystagmus), and vomiting.

When to see your GP

It's important to see your GP if you have symptoms like those described above.

While it's unlikely that you have a tumour, these type of symptoms need to be evaluated by a doctor so the cause can be identified.

If your GP is unable to find a more likely cause of your symptoms, they may refer you to a brain and nerve specialist called a neurologist for further assessment and tests, such as a brain scan.

Or on https://www.ncbi.nlm.nih.gov/pmc/articles/PMC515188/

The reasons for a GP sending a patient for scanning with a headache.

 

It says it should be done for people “with symptoms suggestive of raised intracranial pressure, such as new onset headache in the early morning; or headache that is worsening with coughing, sneezing, or straining should each be viewed with concern”

Dr Brodie said I had ataxia in January, and this is listed as a neurological symptom according to the NHS, and it continuing and getting worse is surely a progressive, sub‑acute loss of central neurological function?

So why wasn’t I referred for either a neurologist or for a brain scan with 3 GP appointments and only as NON URGENT on the 4th?

Also regarding the final reply letter from Glenlyn, it clearly states that Dr Milne “did not give sufficient weight to your symptom cluster when deciding upon a routine referral” and did not clarify why she was referring me and why it was on a non-urgent basis. I am thankful that Dr Milne apologised for this, but surely these very comments admit there was wrongdoing and I should have been referred as URGENT on the NHS and not had to pay for a private consultant and then MRI?

The letter again has no comment as to what was said about this consultation at the Significant Events Analysis Meeting (again as I am assuming they did also find I should have been treated differently to how I was?)

Point 6: this has been covered in point 5 above

Next - “Health Ombudsman Complaint - part 5”

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