Health Ombudsman Complaint - part 5

Part 5, the final part of my complaint -  about my complaint to the health ombudsman!…

7) 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 a brain scan or a neurologist as urgent- as per NICE guidelines?

8) How can my gait be referred to as normal when I had my husband holding my arm as I walked in the room as I was so unbalanced? Especially as only Dr Brodie did a heel to toe test.

9) Re your advice from the ‘GMC’s good medical practice’, I disagree that many of these points were applied.

10) Please can Giggs Hill show me that they have ‘Significant Event Analysis Meetings’ for cases where there is a serious health concern, or rare diagnosis- but when they did everything correctly?

11) Why was this chart not used by Giggs Hill and a normal neurological exam deemed higher significance than dizziness or increasing and worsening headaches?

www.ncbi.nlm.nih.gov/pmc/articles/PMC2593538/table/tbl1/ (Table shown on part 4)

Re point 7:  

I am also pretty disgusted that my links and comments were supposedly read and yet you stated that your advisor found no evidence that the practice did not adhere to NICE and GMC guidance. How can these links not count?  Maybe as it would mean the doctors obviously failed me if you did take them into account?  

The links are from medical websites, not someone’s personal opinion. If they don’t count then your guidelines need updating.

Although the NICE guidelines say “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]”

I believe I did have progressive, sub-acute loss of central neurological functions, just the doctors either did not check, notice them or deem them significant.  
Please can you tell me why your advisors did not think I had this and had told these issues to the GP?

For your information the words (on the NICE guidelines) ‘central neurological function’ do not give an exact result in Google- which make me wonder if they were written so a layperson cannot prove they had this as there is no simple proven answer as to what this means and so it is far harder to say I had this problem and therefore that the doctor was at fault.  

When there is no direct definition it can be changed to suit in a way that favours the system.

How would the doctors have listed that there were abnormalities on examination if they didn’t even check? Only Dr Brodie did the heel to toe test and that was still the only hard cerebellar sign I had when I was admitted to St George’s at A&E as an urgent case. I also had plenty of other signs that I tried to tell them as many of as possible. 

How do I know which symptom may be relevant when you have a whole list of new issues that are getting worse by the day – and are not helped when you are told to only mention one issue by the GP! 

Also I was certainly not asked if I had headaches that woke me at night, felt nauseous etc. (I had lost about ½ stone in a couple of months by March 2016- making me underweight.)

Finally, I was not aware that GPs were able to ask for direct access to scans, or I would have been pushing for that and not just seeing a neurologist to then refer me for a scan. I KNEW there was an issue with my head or neck, and as you can see I wrote these concerns down for Dr Milne as knew most of my symptoms could have been various serious problems.

Point 8: Raised in comments above. How can my gait be referred to as normal when I had my husband walking me into the room to stop me falling over? If I walked alone I would possibly bounce off the walls, chairs etc, and I always had my hands held up slightly to the sides to balance me!  Dr Vo and Dr Milne also did not test my heel to toe walking, so how could they have seen if balance problems were present?

Point 9: I have already mentioned my concerns with your comment that Dr Vo acted in guidance with the GMC guidelines already in point 3 above.

Re Dr Milne- the concerns I have:

Adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient I do not feel this was done particularly well and there were errors that I feel Dr Milne acknowledged, plus even though she had written I was tearful and anxious I did not feel she belittled me for being that way. Although the fact I felt she understood (possibly more than she did) was why I had assumed I was getting an urgent referral and she took my condition far more seriously than I had received with Dr Vo.

Promptly provide or arrange suitable advice, investigations or treatment where necessary. I do not feel this was done, but do feel from the final reply from Glenlyn that Dr Milne recognises she did not communicate with me correctly about the referral.

Point 10.  I have spoken to two NHS GPs, and a senior GP receptionist who all have told me that these Significant Event Analysis Meetings ONLY happen where the doctors didn’t diagnose correctly or made a mistake. Also on my final letter from Glenlyn it clearly states that this meeting found Dr Brodie’s actions were “considered appropriate” yet fails to mention feedback of any of my other appointments with Dr Vo or Dr Milne – which surely means they did not find the same result with either of them?

Point 11.  I know I have mentioned this chart earlier and included it on my last letter to you, but all the doctors comments and your reply still seem to be saying that (even if done fully and correctly- which I do not believe they were as stated above) that ‘neurological testing’ is the main basis of possible diagnosis, and what needs to be done next and at what speed. 

Yet this graph clearly shows the “Best estimates of risk of tumour with headache presentations in primary care and associated features” that I had all of the top 3 risk factors. 

These 3 risks alone added up to 14, yet an abnormal neurological examination is listed as 0.5 – so why were the GPs saying they hadn’t made a mistake using evidence that was 28 times less accurate then the best available evidence?

And of a lesser concern to my case:

12) Appointment times. You said in your final report that these could not be formally investigated as I had not raised them as a concern previously with the practice, yet I did in my complaint letters to Glenlyn on 16/11/16 “In September I booked to see a GP to go through some of my ongoing symptoms since the operation – the earliest appointment we could get was about 5 weeks later on 24th October!”  

I also listed 5 separate date concerns to Charlotte Cheshire on my letter dated 17/8/17.

13) Re my referral to St Georges- this only occurred on time because ‘I’ had a doubt that it had been sent and called Giggs Hill to confirm if it had been. If I had not have called I would like to find out how Giggs Hill know they would have sent it within the correct time frame?

I would also like to bring up some concerns I have:

14) On my discharge letter from the Physiotherapy Department at Molesey Hospital, the information states “her symptoms have now improved significantly and she has full active range of movement (in) the neck with minimal discomfort”…which is completely opposite to what I was saying to them and untrue!

When in fact neither or the two physiotherapists I saw seemed to be able to explain why I was getting dizziness from the neck symptoms I had, I had told Kamil that when I did the exercises he set they made me feel worse- 

If I did them in the day they made me dizzier after and even if I did them at night I felt dizzier the next morning, and both increased the neck pains I was getting- so I was not going to continue to do them.  

Basically they told me there was nothing else they could do to help with my symptoms as in their opinion my neck was fine- and so I agreed to be discharged. Slightly different to saying I had ‘full active range of movement’ and ‘minimal discomfort’! 

Are comments like this on the NHS basically written to tick boxes and not actually help the patient? 

15) I am also very concerned about the report of my NHS 111 call. The difference in what I was feeling and what was written is enormous! From the operators report it seems I presented with little more than a mild headache, from my experience I was sitting on my sofa, in blinding pain, barely able to move or put my head up or down without it feeling like it was going to explode and my eyes twitching with the severity of pain when I moved. I could barely talk or listen to them as the pain was so severe and I now think I was in some kind of shut down. This pain was FAR worse than anything I experienced in hospital after brain surgery! Even when I refused pain killers.

I know I said no to some of the things listed, but certainly not all on the listed report and I have absolutely no recollection that they told me to go to my GP within 3 days if it continued. I remember thinking at the time that this was a pointless phone call as all they did was tick off boxes and that they didn’t listen to me at all, or understand that I had a neurologist referral and my concern was could this be something serious?

The reason we called them is my husband wanted me to go to A&E, but I refused saying I couldn’t manage it and didn’t want to go. Plus, as keeps being advertised- A&E is for ‘accidents and emergencies’, of which this was neither- as my GP had said it was an ongoing problem. But I agreed that we could call 111 and I would go to A&E if they suggested it.

I would like it if someone could listen back to this recording and see if the call handler acted appropriately?

Finally on this call- what is the point in sending a copy of the report back to my GP if they didn’t follow up that I was supposed to see them? (I was not in a fit state to remember this) nor take into account that my neurology referral should maybe be speeded up due to the pain level increasing severely and needing to call 111 as in severe pain?

The ending of this letter above was written on my first part of this blog post.

I have no idea if the Health Ombudsman will even address it, or on some bureaucratic bullshit they will once again find no fault with any of the GP’s or the doctors practice.

But my next step is to contact the GMC about making a complaint about two of the doctors.

The system where a patient has to complain about their treatment without support from someone who knows how to complain for them is ridiculous. As there is one thing I have learned - there is a system in how to complain and get somewhere, and most patients don't know it.

Although I think complaints to most organisations can me made legally for up to two or three years after the start of the problem and by then the patient will hopefully be more healed from their trauma, but in many ways doing so earlier would be more helpful and beneficial, as both the doctor is more likely to remember details of treatment and hopefully they won’t do the same to anyone else!

But speaking as a patient who has had brain surgery- it is a nightmare.

I know just trying to write the first letter to the doctor’s surgery was awful, I was in tears just trying to express the basics of what I wanted to write. It was hard enough to find the correct organisation  to complain then organise my thoughts to write the address on a new word document.

Then when I knew where who was writing to I couldn’t think of the words, it was so hard to open a web page to find info I needed and try and link it to what I was saying. I knew what I was unhappy about and how disgusted I was with much of my treatment, but I couldn't analyse what they replied back as it just didn’t make sense.

And typing… it was SO hard. For each word I wrote it wrongly- either I couldn't remember how to spell it, or my brain typed the letters in the wrong order, I hit back space more than any other button in the keyboard! If I remembered a point I wanted to raise I had forgotten it before I could type it up.

I had notes that even I couldn't understand as I couldn't read what I had written as my handwriting was so poor.

It was only the last few months (at least 18 months after surgery) where I looked again at the reply comments and could see the instances where they had contradicted themselves in what they had written, or mentioned something that they didn’t do and I had the realisation that I needed to reply back directly to that point.

Yet they are doctors who know the technical names, what the procedures are and can probably have lawyers on it right away to make sure they don't say something they shouldn’t. I was still suffering with a traumatic brain injury - what else can 6 hours of brain surgery be? And yet I was supposed to compete with this system without support. It’s madness and not designed for the patient at all- more to protect the doctors and the system.

I so appreciate I was lucky. My parents paid for a private Dr, then scan. I didn’t have a stroke or anything that caused significant damage to my heath because of the delays that shouldn't have happened, despite the fact that my health was deteriorating fast.  But it really was luck and privilege (or my parents giving me that privilege) that prevented anything more serious, and many people don’t have either.

It is for those other people that I will do my best to make sure that these doctors, and hopefully others will not fail other patients in the future, and urgently refer them for the treatment they deserve… the percentage of survival for brain tumour patients is dire enough as it is, the delay could easily be enough to kill them..

I really was lucky.

The Dr's could not see the woods for the trees

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 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:

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: 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, 
Slurred speech.

Or on: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 
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/ 

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

And on: 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 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

Health Ombudsman Complaint - part 3

Part 3 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 one is mostly on the 2 appointments I had with Dr Vo - when I asked for a referral to a neurologist and did not feel at all listened to, plus how the Doctors can write they did ‘neurological exams’ when they only did a part test.

3) I do not believe Dr Vo gave a true representation of my symptoms, on either of the dates I saw her, on my medical notes and have major concerns in her ability.

4) I have concern that the doctors at Giggs Hill were not following the guidelines for full ‘neurological exams’.

Point 3: On my medical notes on 9th March 2016 from Dr Vo it states that I had ‘no headaches’ which is not the case.

I do remember saying to her that “I never normally have headaches, but that I had been getting an increasing number of dull pains in my head and also head pains and pounding.” Which was significant and new for me. But I recall she asked this while she was sitting at her desk facing away from me and not looking in my direction at all.

To back my case - I had contacted a practitioner in December as I had been getting a dull ache at the bump at the centre back of my skull, and also been seeing, at various times since, a craniosacral therapist, Bowen practitioner, homeopath and osteopath because of these pains and dizziness. 

As well as the physiotherapist I had been referred to via Dr Brodie and had seen twice by the first time I saw Dr Vo, so I know I had both sharp and dull head pains or headaches (if you prefer to call them that) when I saw her. Hence why

 I don’t know how she could write ‘no headaches’.

I also have a chart which I write down any major symptoms on, and from the 28th February I had added a new column where I specifically noted “head/neck pounding” – which means I had already been suffering with this for a while before I wrote it with the start of my new chart.

She also wrote on this date that I had ‘no neurology’ I assume by this she means the nose to finger test? Which after looking at how they should be done online I do not believe she even did correctly as the distance of her finger I felt was the same in all, when it should have been a different depth. 

I had NO heel to toe test done, so with a patient complaining of severe and constant dizziness/vertigo surely this should have been the most obvious neurological test?

Dr Vo also has it on the notes and told me it would be a 3-4 week wait for my x-ray report to come back, despite it showing as arriving back the next day on my notes. Hardly helpful when I was told by her to book a follow up appointment as I left her surgery allowing this length of waiting time, when I felt so awful.

I think in my appointments Dr Vo decided the focus would be neck pain as I had equal concerns with my dizziness as well as the neck pains and headaches. I had told her this- but she focused on the neck pain, saying 

we could only address one issue at a time.  

My husband again walked me into the consulting room supporting my balance- as he did with all the appointments (as I would have bounced off the walls otherwise). I was also clearly told at the start of one of the appointments ‘what was my main symptom?’- even though I had several, which all seemed to be linked. How was I to know which is most serious or relevant in which to tell her? 

At the last count my body is still connected- so why she could only focus on one issue at a time, and not a symptom cluster I have no idea?

I feel my dizziness got ignored over the neck symptoms. If she had counted everything she may have seen a different picture?

On the final Glenlyn reply letter dated 30 January 2017, it says Dr Vo was acting re the specialists suggestion (ENT) when she offered me painkillers – yet the letter from Dr Wilson states that:

 “if her symptoms are ongoing particularly related to her neck then it may be worth pursuing a Neck Specialist Opinion”.  

Surely Dr Vo should have referred me for this if she was ‘doing as suggested’?

On the complaint reply letter from Glenlyn- point 3 states why I asked for a neurologist and on the ENT letter it suggested a ‘neck specialist’. This was as when I went to the ENT appointment, Dr Wilson spoke with a colleague as to my next best course of action and then told me they most likely thought my issues would be from my neck, but to definitely get to see another specialist- either a rheumatologist, osteosurgeon or neurology/neurosurgeon- which ever was best for neck/nerve pain in the area that I live. Surely a ‘neck specialist’ could be all of these?

This letter also states I should have got another appointment within a week if things were continuing, yet it took 2-5 weeks to get a routine appointment. Maybe Dr Vo didn’t realise how bad the appointment waits were at her own surgery?

Dr Vo also made it very clear as I left the emergency appointment that these appointments I was not to use again unless it was an acute emergency- which ongoing dizziness and pains were not. Also that she was not able to advise us in them if I could claim any type of sickness benefit etc -as I was unable to even look after the house let alone do anything apart from sit on the sofa. In fact 

I felt she took more time up telling me why I was wrong and what she couldn’t do then she did listening to and helping me.

It also says “she was reassured by both the ENT specialists opinion as well as the x-ray findings and normal neurological examination”- but surely this should be the opposite and she be even more concerned that none of these tests had found an answer to the cause of my symptoms? And in fact it be more of a reason to refer me to a specialist? (be it neck or neurology)

As I put in my previous letter “Both my husband and I felt that my symptoms and concerns were not treated with respect by Dr Vo, and that it felt she was all but saying I was exaggerating them or being a hypochondriac.

At no point in either of the two appointments with her did I feel listened to and that she was asking questions. I did not feel as though she understood how seriously it was effecting every part of my life. I kept trying to say to her various things that were happening to me in the hope it would make her connect the dots on something and diagnose me, but felt I was just being annoying and that she was not listening.

Also these points were raised on my last letter relating to on your link from:

http://www.gmc-uk.org/guidance/good_medical_practice/apply_knowledge.asp  (although the actual web page you gave me no longer exists) I have copied the comments I disagree with in blue.

14. You must recognise and work within the limits of your competence. So surely a GP should refer me to a neurologist rather than insist in take pain killers or insist I have an x-ray when I was showing progressive, sub‑acute loss of central neurological function?

15. You must provide a good standard of practice and care. If you assess, diagnose or treat patients, you must:

a. adequately assess the patient’s conditions, taking account of their history (including the symptoms and psychological, spiritual, social and cultural factors), their views and values; where necessary, examine the patient

I assume this does not include tutting and rolling your eyes at a patient when they say they don’t take pain killers? – as Dr Vo did to me and was witnessed by my husband.

Dr Vo and Dr Milne also did not examine me with the heel to toe test at all during the appointments. (only Dr Brodie and the private doctor did this)

b. promptly provide or arrange suitable advice, investigations or treatment where necessary. So why didn’t I get referred, even when I asked for a neurological referral?

c. refer a patient to another practitioner when this serves the patient’s needs. This did not happen.

16. In providing clinical care you must:

a. prescribe drugs or treatment, including repeat prescriptions, only when you have adequate knowledge of the patient’s health and are satisfied that the drugs or treatment serve the patient’s needs.

So why did Dr Vo want to prescribe me diazepam? How did she know this would serve my needs, when she had seen me all of 5 minutes, I had none of the main conditions for prescribing it, and was already having the possible side effects as issues? If I had agreed to diazepam there would have been the very real possibility I would have had a stroke or died while spaced out on my sofa!

b. provide effective treatments based on the best available evidence. I did not see this. I believe if a layperson can find the evidence that I needed an urgent scan, a fully qualified Dr should be able to.

c. take all possible steps to alleviate pain and distress whether or not a cure may be possible I totally disagree that this happened. I was given further distress by being refused referral, felt I was not listened to and even ridiculed, even thought my symptoms were going rapidly downwards.

e. respect the patient’s right to seek a second opinion Although as I could not get any referral on request- we had to pay for a private Dr’s opinion.

If you supposedly read and took into account these comments on my previous letter, then 
please tell me how you know that Dr Vo followed all guidelines correctly if you were not there? 

I was there and I left the room in tears as I felt so disgusted and not listened to. She did not seem interested in wanting to help me, and for much of the appointments seemed more interested in writing notes at her desk than even looking at me. I felt she had no respect for my opinion on what drugs I wanted to take – or not, and didn’t seem to care one bit that I could barely do more than sit on my sofa feeling worse each day.  My husband was also there, his opinion was that she just wanted to write a prescription and get us out of the room as soon as possible.

I would also like to know what Glenlyn has written in their Significant Event Analysis meeting about Dr Vo (I am still awaiting this information) as regarding Dr Brodie’s actions it says they were “considered appropriate” at this meeting. What about Dr Vo’s?

Regarding point 4:

I do not believe that I was given a full neurological exam at any point after January 2016 at Giggs Hill, (apart from with Dr Brodie in January) It clearly says on www.gpnotebook.co.uk/simplepage.cfm?ID=x20040509161757089560 that these following 3-minute neurological examination has been designed by neurologists to exclude sinister causes of headache including brain tumour and haemorrhage.

Yet I am 100% sure neither Dr Vo or Milne asked me to do the heel to toe test or walking on heels- both which I KNOW I would have failed.  I walked in being held by my husband- how can they not have tested me for this?

I remember doing some eye tests and possibly facial ones, but even when I did most of these when I was admitted to St Georges their only ‘hard cerebellar sign’ noted was ‘inability to do heel to toe walking’. So surely if this was the ONLY test I failed despite having swelling in the brain and hydrocephalus - why weren’t they done with a patient complaining of dizziness by the GPs?

Health Ombudsman Complaint - part 2

Part 2 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 I gave about each summary point in the same blog post.

The points I want changed or reinvestigating regarding my complaint against Glenlyn are: (although I have tried to write what I feel are the summary points here- I wish ALL the concerns I have in the WHOLE of this letter to be covered under one of these summary points and all of this letter deemed relevant- please tell me if they are not covered and I need to edit them)

1) As I asked on my letter dated 17/8/17: re Summary “Point 2) Please can you change this to:

“I am concerned that the practise refused to refer me to a neurologist upon request on two occasions."

2) “I am concerned the practice did not pick up any of the signs of a brain tumour despite them being almost text book signs.”

Regarding point 1 above. I know that both times I saw Dr Vo she refused me an appointment with a neurologist, despite me requesting one at both the appointments.

My husband was also with me in these appointments and heard her say she would not refer me. The reasons being she had not ruled out lesser issues which meant I needed to have an x-ray and then take painkillers to follow ‘her’ protocol (I cannot see this is any medical protocol).

I was not advised by her to keep a symptom diary or do anything else to show that I needed a referral.

I know it was written on the reply letter from Dr Strickland that Dr Vo didn’t recall refusing my requests for a neurologist, but why would a GP write she refused me as it will only get her into problems if I was right in needing the referral. (Which is the case)

This disregard and my extreme concern of what was happening to me was the reason I took a complete list of all the possible symptoms that might be even remotely related to Dr Milne when I saw her.

Regarding point 2- as I wrote on my last letter: “It says on ‘The Brain Tumour Charity’ website:

If a brain tumour is located in the cerebellum, symptoms may include difficulty with: Balance, A loss of co-ordination, Difficulty walking and speaking, Flickering of the eyes, Vomiting, Stiff neck, Problems with dexterity (skills in using your hands)

Headaches associated with brain tumours are usually severe, throbbing, worse in the morning (you may wake with one) and aggravated by straining or coughing.

Raised intracranial pressure (ICP): Headaches, Seizures, Changes in vision, Nausea, Tiredness

www.thebraintumourcharity.org/understanding-brain-tumours/symptoms-and-information/adult-symptoms/

I had, and told the doctors, that I had- Loss of balance, loss of co-ordination, difficulty walking and speaking, feeling my eyes were flickering when my headache was bad, stiff neck, changes in vision and if they had asked would have said I had problems with dexterity, nausea and tiredness.

I am also very concerned that it says: Headaches associated with brain tumours are usually severe, throbbing, worse in the morning (you may wake with one) and aggravated by straining or coughing as I felt that the headache and dizziness being worse with coughing etc was an issue and made sure the doctors knew this. Plus I was waking at night and the morning with headaches - when I never suffered from headaches previously.

I also have proof that the Doctor Milne knew of this as when I received my medical notes back from Glenlyn they included the letter I took into the surgery when I saw her on 23 March 2016

- Details are below, along with added highlights showing how almost each of the comments I had written were symptoms of a brain tumour.

Evidence 1 (Blue Text is a copy of the letter taken to Dr Milne on 23 March 2016)

I have added in red next to my comments a letter representing the symptoms of

Intracranial Pressure:

Headaches – H

Seizures – S

Changes in Vision – V

Nausea – (no symptoms)

Tiredness –T

Cerebellar Tumours:

Balance – B

Coordination – C

Walking and Speaking – W

Flickering of eyes – F

Stiff Neck – N

Dexterity – D

Current symptoms

Loss of balance- feel I am on a boat. Hit objects as I walk past, or think I will. B, C W

Legs feel wobbly and weak. T B W D

Hurts when I turn round too fast/far (parking car is hard) then get dizzy B N D

Occasional tingling/numbness in neck and head. (like been laying on something hard) N

Tightness on top of head, or back of head (between ears, above or behind) H N

Squinting to focus straight. V

Back of head and neck (atlas joint?) pounds at times. Definitely hormonal (started during period and bad with each since- could feel around eyes too) H N

Head pains seems worse if I sleep wrong (on front with pillow, or tip neck up and back) H N (medical literature clearly states “Headaches associated with brain tumours are usually severe, throbbing, worse in the morning (you may wake with one) and aggravated by straining or coughing”)

Both headache and unbalance worse when cough, sneeze or strain. (if I put my head against the wall it seems ok!) H N (medical literature clearly states “Headaches associated with brain tumours are usually severe, throbbing, worse in the morning (you may wake with one) and aggravated by straining or coughing”)

Occasional headache on front top of head. H

Started neck pain when painting ceiling, but vertigo started getting bad a month or so after this. B N

Symptoms for a while

Occasionally- Struggle to balance self with eyes- walking seems jolted and makes me feel unbalanced. V B C W

Travel sick and feel weak and wobbly after a drive. V B

Blurry eyes & floaters (had checked out my Kingston Hosp ages ago and optician) V

Lights blind me – sun or car headlights in dark V

Find myself pushing imaginary glasses up to see better (I had glasses for years) V

Had odd tingling episodes- was checked for carpel tunnel years ago. Plus have felt similar in legs to when all hairs been pulled out after cranial therapy

Occasional issues swallowing (keep wanting to swallow)

Occasional twitches, where I can feel a muscle tightening up and twitching, esp when stressed/nervous/cold. T F (I also wonder could these have been mini seizures?)

Clumsy! C D

Can I rule out?

Brain tumour or problem? (this was MY main concern… as even I knew I had several symptoms of a brain tumour …and I am not a Dr)

MS?

Chari malformation? neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected (this is a cerebellar disorder- so hence why many of the symptoms were the same)

Dyspraxia? (I have most of the symptoms!) can I get tested?

Irlen Syndrome? Some eye symptoms. Physical problems- Headaches & Migraines. Dizziness. Frowning. Mood swings in certain environments. Nausea. Sore, dry, red or watery eyes. Squinting Strain and fatigue. Stress from computers, reading and lighting. Tiredness. Stress. Panic. A feeling of disorientation. Restlessness.

Health Ombudsman Complaint Is this service honestly here for the patient?

Today I have finally written a formal complaint against the official reply letter I received from the health ombudsman about my initial concern and complaint that my GP’s failed to diagnose my tumour. 

The ombudsman apparently found there was no wrongdoing- apart from my surgery failed to remove my staples!  My reply is a little long and confusing so I will try and break it down into different blog posts… but here goes with the gist what I wrote. This is the basic outline of the letter:

"Sorry it has taken me so long to reply to your letter, but my husband called you shortly after we received your final report that we were totally dissatisfied and disgusted with. We were then somewhat in shock to realise that

YOU gave me the ‘summary points’ as to what you would review and these very same summary points were ONLY what could be taken into account for you to review after this, ignoring my main complaint points against Giggs Hill surgery.

It basically feels like a total farce and a waste of both of our time.

I have since felt rather disheartened to start again with the complaint, as each time I need to re-read it all or I forget some of the issues that I want to make, as my memory isn’t as good as it was before brain surgery and it is very emotionally exhausting re reading how you very nearly died and just how many warning signs the GPs had, and ignored.

We have also been waiting for Giggs Hill/Glenlyn to send us copies of my medical notes and also the ‘significant events analysis meeting’- the last of which after several ignored phone calls we have had to formally request under Freedom of Information act and are still waiting for.

We were also not made aware that I should have asked for my medical records before or during my initial complaint to you, but only got told this when we phoned to ask how do we complain about your service, the final report and the lack of response to my concerns. Surely this should be on your online guidelines or initial reply letter? After all you know what steps need to be followed as you do this every day, I have never complained to the health ombudsman before, nor had a significant illness and brain injury. Are you there to fully support the patient or not?

I am not also sure why I, as a patient, should be researching things like NICE guidelines on what testing should be done for the symptoms I had? Surely that should be what the health ombudsman should be doing for me… not seemingly wanting me to give all the information until you can no longer deny that the GPs made mistakes!

We both feel it needs to be made FAR clearer when you are coming up with the summary that these will be the ONLY points on which the complaint can be addressed. At no point during the phone conversations I had with your staff was I made aware of this. If I was aware I would NOT have agreed to only having the 6 summary points, would have clarified what can be covered under each point, plus would have asked for these summary points to have been in writing so I could digest them better and ask my husband for support.

For example under point 1 ‘Mrs Barlow complains about the care and treatment provided by Glenlyn medical centre from January – March 2016’, I assumed that this would include ALL of the meetings, treatments, referrals, drugs offered, time it takes to book appointments etc that I had with Glenlyn between these dates- but this is clearly not the case!

I have also had 3 different people who dealt with my case- Iqraa S (who I spoke with initially for 60 mins or so on the phone and she went over some of my concerns and clarified the initial complaint letter), then Gemma M and finally Charlotte C. At no point was I notified if this was normal practice, my case was being moved to a different department, or the staff left or were both working on my case etc. I just received another brief phone call from them when they wanted further information. In fact with one of these changes of caseworker, I called up to see what was happening with my complaint and was told that another person had taken over.

None of them called to ask if I would prefer to be called by phone or emailed. Which would have definitely have been mail or email- as I still struggle with memory and understanding since brain surgery, and email gives me time to digest it and reply clearly. Plus the phone line was often too quiet for me to hear well. This is surely against your own recommendations and what your customer service said I should have been offered"

(I have added the summary points and reviewed them all- which I will add on following blog posts)

"Despite your previous finding that the only mistake that Glenlyn had was not to remove my staples when I asked, please read all the info above and

tell me to my face that there were no other mistakes made?

From what I was told by the neurology staff at St Georges Hospital, when they brought my already urgent operation date forward a week due to my increasing brain swelling and fluid, I would be likely to have a stroke within a couple of weeks if I didn’t have urgent surgery. Several of the staff agreed that having a private scan probably saved me from that, or even death and expressed their concern and shock as to how my symptoms got ignored. Maybe I didn’t look ‘ill enough’ as I know one registrar expressed surprise at how well I looked after seeing my scan.

Yet from the mistakes by my GP’s on the NHS I still wouldn’t have even seen the neurologist by the time I had surgery. Even if they did then offer scans and surgery that same day it would have still put me in this dangerous life threatening position!

How can Glenlyn say that they did nothing wrong when basically it boils down to the fact that if we hadn’t paid privately I could well have had a severe life changing consequence - or be dead? They would have been paying out a little more compensation to my family than the costs I asked for…

That is what this case boils down to- two doctors failing to diagnose my severe symptoms, offer me an MRI or urgent referral for a very major, albeit rare, problem that could have killed me if I had not had parents who paid for a private Dr who all but instantly suggested I needed an urgent MRI.

Isn’t this exactly what we go to our GP for?"

…it actually scares me. How many people have died because they were ignored like this when they saw their GP with similar symptoms of a brain tumour? I was ‘lucky’as brain tumours go as mine was benign and this 3 month delay didn’t give cancer a chance to become untreatable with surgery. Mine was able to be cut away. Others are not so lucky as I want ALL GPs to understand what the symptoms are for brain tumours, so they don’t ignore or treat any more brain tumour patients as a hypochondriac

.