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 that 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 -in part 3) 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:
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?
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,
Slurred speech.
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
unexplained headache that becomes progressively severe.
“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.
‘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).
Clinical feature
|
Likelihood ratio (95% CIs)
|
Risk of tumour in headache presentations in primary care, %
|
Headache causing waking from sleep
|
98 (10 to 960)
|
9
|
Dizziness or lack of coordination
|
49 (3 to 710)
|
4
|
Rapidly increasing headache frequency
|
12 (3 to 48)
|
1
|
Abnormal neurological examination
|
5.3 (2.4 to 12)
|
0.5
|
Headache with focal neurological symptoms
|
3.1 (0.37 to 25)
|
0.3
|
Aggravated by exertion or Valsalva-like manoeuvre
|
2.3 (1.4 to 3.8)
|
0.2
|
Associated vomiting
|
1.8 (1.2 to 2.6)
|
0.2
|
Worsening headache
|
1.6 (0.23 to 10)
|
0.1
|
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
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.
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
