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Brain Tumour

Old 17th Nov 2019, 12:05
  #1 (permalink)  
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Brain Tumour

I have thought long and hard before posting personal information on this particular forum, but I have exhausted all other avenues.

I unfortunately have been diagnosed with a brain tumour. This is the sort of news you really don't want to hear. Not that it matters, but I am only middle aged, and hope to live a good while longer.

I had a head MRI scan about three years ago after being unwell, and disclosed this to the CAA. The CAA did not ask to see the scan. Unfortunately, the Dr's who looked at this scan (I assume a neuroradiologist) and a Consultant Neurologist, both missed the tumour. I was then wrongly diagnosed with an illness I had to prove I did not have, which took the focus away from my real illness. The CAA took my medical away for many months before I was allowed to return to work.

By pure chance I had another MRI this year, and it showed I had a brain tumour. The CAA wanted to know how long it had been there, so I sent my previous scan off to the NHS for them to look at again. I heard nothing back, and when I chased this up, it was found they had lost the MRI disc. They apologised for this, and said they would just get the scan direct from the hospital. This was a few months ago. They have not done this.

I was then sent for a further follow up scan, which I have been told nothing about. Because of this, I had a Data Access request to see the results - it is worrying having such a condition, having been told it is 'probably' benign, and nothing else, other than initially losing my sight, etc, etc. When I got the report back, it stated my tumour was increased by 25% in the last four months. I heard nothing from either the consultant or the hospital.

Over a month has gone by, so I have now insisted on being told what is going to happen. When my GP finally got through to the department, they stated that they did not realise I had been sent for a second scan, so nobody has done anything about it. They had not even seen the results, which would normally be sent to them within a few days.

My self and my family are not prepared anymore to sit and wait while my condition gets worse, so I have had to pay for second opinion. Only through this have I found out that I had the tumour for three years, as it is clear on my first scan. All this time I have been unable to work, and lost a lot of income. I am fortunate enough to have paid (expensive) Loss of Licence insurance premiums for many years, but have lost the payments, as the CAA confused the insurance company by sending our consecutive contradictory information, and have given me no guidance at all about the implications for my medical.

I have pleaded with the CAA AMS to give some guidance so I can get appropriate treatment without unnecessarily endangering my licence, but have been told they will not 'speculate'.

Because the CAA won't say what I have to do, I am in a position where I cannot get back to work.

My point is this: all of these folk are trained and highly qualified Dr's, typically vastly experienced and highly qualified. The G.P. The AME. The consultants. The radiologists. The good folk within the CAA - industry experts in their chosen fields. There has to be some accountability. YOU DON'T JUST SIT AT YOUR DESK ALLOWING PEOPLE TO SUFFER. There is physical suffering e.g. a growing tumour; there is emotional suffering - the patient and the family; there is uncertainty, and the potential for long lasting damage to mental health; and there is career and financial damage.

If I was a bus or lorry driver, I could get the information I need in minutes - I'd log onto the DVLA website, and it is there - crystal clear, in detail. I could take this to my treating Dr, and discuss the implications against the risk of any procedure.

There appears to be such a lack of confidence between the Dr's involved in aeromedical certification that it leads on cases such as this, in complete parallasis in decision making.

I wonder how these folk would feel if they were placed in a similar position??

P.S. The tumour has nothing to do with lifestyle or general health - it's just a case of the hand of fate. Rather me than a child or baby.
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Old 17th Nov 2019, 16:15
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It’s a crappy situation to be in and I have the fullest sympathy and empathy for you.

whilst I’ve never had cancer myself, I’ve known many that have. Sometimes the greatest source of information and “what to do next” without going down the expensive route is to get in touch with a charity that deals specifically with your brain tumour (if you’ve had an exact diagnosis). They’ve all been through what you and your family are going through now and are an absolute wealth of information support and will be able to point you in the right direction for treatment and care. And they’re a support network for the crappy days that you’ll inevitably have.
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Old 18th Nov 2019, 07:45
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As b to b has said that sounds crappily awful..

In my experience (PM will follow to explain in more detail) the AMEs/CAA rarely if ever advise in detail on treatment - I stand to be corrected but I think they see that as being something that needs to be resolved between you and your own medics, in this case your NHS or private doctors. I also stand to be corrected again but I think it is possible the CAA has not got much if any actual in house oncology expertise anyway.

If I was a bus or lorry driver, I could get the information I need in minutes - I'd log onto the DVLA website, and it is there - crystal clear, in detail. I could take this to my treating Dr, and discuss the implications against the risk of any procedure.
Are you aware of the oncology guidance on the UK CAA website?

https://www.caa.co.uk/Aeromedical-Ex...e-material-GM/

Last edited by wiggy; 18th Nov 2019 at 08:12.
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Old 18th Nov 2019, 10:53
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Your situation should never happen - that is an appalling state of affairs.

As wiggy says, an AME is purely an occupational health role. They are not responsible for the diagnosis or treatment of any pathological condition. Rather they assess the risk that such a condition poses (within the legislation of the regulatory body concerned) to your occupation as a pilot based on medico-legal or other reports from specialists in the field.

If one sought litigation in the above case it would be a complex case in terms of liability due to the number of parties involved. Read that as meaning it would be expensive and timely to do to.

I wish you all the best with the treatment for your condition and getting back to work.
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Old 18th Nov 2019, 17:50
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I think there are 2 issues; first the illness and getting you well again. Second the poor care

Do you have a diagnosis? Please feel free to PM me and I will guide you through it. I suspect I can guess the diagnosis but need to check with you. Your immediate demand must be to see a neurosurgeon.

As written the issue is that the neuroradiologist misreported the MRI. He is responsible. This is too specialised for the others to be considered at fault. The rest of your sad story is I very much regret the sort of poor communication we see day after day and I share your frustration.

Anyway the first step is your condition and the offer is open if you wish to take it. Good luck
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Old 21st Nov 2019, 11:05
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Thank you all for the above kind posts.

I'd like to say I am not looking for sympathy, but the sympathetic tone here is greatly appreciated. I want to raise the issues that I hope I have highlighted.

I also don't want to give an incorrect impression of my case. Specifically in relation to cancer. I have not been told I have cancer (I have also not been told I do not). I have been told (and seen!) the tumour on scan with my own eyes.

Mistakes also do happen in medicine, and I cannot imagine for one moment any of these are deliberate; it is a complex science, not always precise. I do however, think due care and attention should always be undertaken because of the potentially catastrophic effect of errors.

What is almost impossible to cope with is the lack of guidance from the CAA. Any consultant can diagnose and suggest / recommend suitable treatment. Only the CAA can advise about your licence. This is completely specific to them. Often there are diagnosis specific flow charts. In theory these are clear and non-ambiguous. Failing this there is written guidance from the authority.

For example there is written guidance for oncology. There is also written guidance for an array of conditions.

I have been unable to find any such guidance, anywhere.

They make it so difficult to be able to cooperate and comply with what are 'unwritten' rules.

From a professional perspective, how can you ever keep your employer informed when you don't have a clue??

F&B
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Old 21st Nov 2019, 15:21
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As usual, Radgirl above has it right. Your efforts here should be at clarifying your diagnosis and determining what the course of action should be. I find the delays in finding out, which you have experienced, appalling, and you need to be raising holy hell about that. This is a matter for you and your treating/diagnosing medical people to sort.

After that, then you can get to dealing with the aviation medical people.

Keep in mind that many brain tumors are not cancerous, but still significant due to their location. (Pituitary adenomas come to mind.) And treatment for these has advanced enormously, with excellent results. It is a very sub-specialized area of expertise, and you need to insist on being referred to the proper place. There is every reason to hope for a good outcome here. All the best.

Graham (MD, but not AME!)
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Old 30th Nov 2019, 13:40
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Originally Posted by obgraham View Post
As usual, Radgirl above has it right. Your efforts here should be at clarifying your diagnosis and determining what the course of action should be. I find the delays in finding out, which you have experienced, appalling, and you need to be raising holy hell about that. This is a matter for you and your treating/diagnosing medical people to sort.

After that, then you can get to dealing with the aviation medical people.

Keep in mind that many brain tumors are not cancerous, but still significant due to their location. (Pituitary adenomas come to mind.) And treatment for these has advanced enormously, with excellent results. It is a very sub-specialized area of expertise, and you need to insist on being referred to the proper place. There is every reason to hope for a good outcome here. All the best.

Graham (MD, but not AME!)
Thank you Graham

The only thing holding things up now is the CAA, who refuse to speak to me, and will not reply to letters.

I have actually had to get my Neurosurgeon to write to them, and it will be interesting to see if they even reply to him. I find out this week if I am going to need surgery, and I really hope that I am not placed in a position of having this major procedure done without the knowledge of how it will effect my career.

Can you imagine ANY other Authority getting away with behaving like this - even the not replying bit? Even if you ignore the negative effect on your health (delay, uncertainty), can you imagine a HGV driver having to go through this? It simply would not happen - it would be all over the press.

How can a pilot adhere to medical guidance, if the regulator insists that they will not let you have it?

I intend to write to the CAA when (and if) I have to have surgery, and tell them I have had no choice other than to follow my Doctors advice. I wonder how long after I wake up they will send me a letter telling me how long the grounding will be ...........
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Old 30th Nov 2019, 17:26
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I have actually had to get my Neurosurgeon to write to them, and it will be interesting to see if they even reply to him,
When I lost my Class 2 medical because of leukemia the CAA warned me that it would be a long time before I could hope to restore it, if ever. Two months later, following a successful response to treatment, my oncologist sent a report to the CAA. The Chief Medical Officer then wrote to me restoring my medical which had not yet lapsed. I do not believe that they responded to the oncologist.

I can't help wondering that, as long as they have a professional medical opinion to rely on, they can be quite cooperative. Obviously it may be a lot tougher in the Class 1, commercial world.
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Old 30th Nov 2019, 19:38
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Perhaps the lawyers can say whether Judicial Review is ever an option when the CAA responses are less then satisfactory?
Or any other legal routes ~ EU direction....?
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Old 30th Nov 2019, 20:17
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I am so sorry to hear about your medical problem.

I don’t know what has happened to the CAA, but the last time I went to CAA Gatwick in person for a type rating to be added to my licence, the person dealing with me was unpleasant and rude. Losing your medical data is inexcusable.

Perhaps you could email the CEO of the CAA; Richard Moriarty? Don’t know his email address, but I am sure you can find it.
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Old 1st Dec 2019, 11:01
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Originally Posted by parkfell View Post
Perhaps the lawyers can say whether Judicial Review is ever an option when the CAA responses are less then satisfactory?
Or any other legal routes ~ EU direction....?
Thanks again.

It's more about being able to enact an appropriate treatment plan than lawyers, at the moment.

It has crossed my mind about liability for losses, if you tell them what your Doctor advises, have the treatment, and then they only tell you the consequences AFTER you have been treated. Who's 'fault' would that be?? I have already told them in writing that I can't be expected to follow guidance they refuse to give.

The reply?

None.
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Old 1st Dec 2019, 14:31
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If it helps,

[email protected]
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