Rant,rant,rant

[Lou]

As some of you know I am currently residing in the UK and will be here  for some time. I had my first six month check up one month ago. I waited patiently for a call, a letter, an appointment, something, anything.I have received Nothing! I contact my consultant, his secretary advised that I will be seen maybe sometime t9wards the end of October, how cray is that! I contact my GP, they are unable to obtain results and ask 'why have you not been referred to a neurologist??
Okay, rant over
Lou x

[Brewers7]

A month ago I fell and brpke my collarbone,  Possible seizure.  My neurologist said that he can see me in August.  My husband called my neurosurgeon who quickly ordered an MRI.  No tumor problems.  Overall, I have had wonderful treatment and I have been very blessed, but there have been moments.  Rant on.  This is the club.   Susan

[Chances3]

Hi Lou,

I have kept you in my prayers.  I was going to send you a personal message to see how things are going.  I'm glad you posted, how are you feeling ?  I'm sorry to hear about your experience with your health care system.  Isn't there something you can do?  Can you contact your local representative and have someone fight for your health rights?  Continue to rant here, you're not alone.

God Bless.

[MDemisay]

Oh Lou,

I didn't know your system over there was so bad! It's awful! I don't know how your system of government works over there but I will pray from across the pond!

Take care, God loves you and we here on the ANA forum care about you too! Come back often and rant as often as you'd like perhaps we can offer suggestions that you may not have thought about.

Mike

[Lou]

Thank you both so much, your kind words and prayers mean so much. I can't believe the system and treatment either...... I sometimes think that maybe I am being overly sensitive and making a mountain out of a mole hill, after all if they aren't worried then why should I be!!! But... They are not dealing with my symptoms,it is a medical condition, it may not be life threatening but it is life changing. I have decided that I am going to be proactive. I am going to go and see my GP and ask for a new referral to a different specialist, not sure how that works on the NHS but going to ask anyway, I am also going to go to the hospital complaints department and see what they can do. I was also thinking of asking about seeing a neurologist, but am not sure if this is needed, what do you think.
Once again, thank you both for you help, support and prayers
Lou x

[MDemisay]

Lou,


I may be showing my age here (55) but anyway here goes, a long time ago before there was the sort of electronic nightmare that is called the Internet ,we dealt chiefly by letter and the deftly handled CC: (which means carbon copy in existence before copy machines). We used them all the time when we wanted to get the message across that we were not necessarily going to be satisfied with the response we got, it usually got the point across.

It is an antiquated system however, it is like killing a fly with a shotgun instead of regular bug spray. Sometimes it's good "to shake the tree" ! It works well and gets the idea out that sometimes the "system" is a little to cumbersome and slow moving. Sometimes a well placed letter with a CC: on it gets a little more attention than a letter only going to one person if it has 3 or 4 people to whom it is going it will surely get more attention! make sure your letter goes to the General Practioner, the Neurologist,the Neurosurgeon, the Representative in Parlement and even The Queen. Although, on the last one I may have gone too far!

I have good intent!!!

Mike

[Jim Scott]

Lou ~

I was sorry to learn about your frustrations with the NHS but if you can't rant here, where?  So, feel free.

Having never lived under a government-run health care system, I cannot offer any credible advice except to encourage your decision to become more pro-active in pursuit of your health care in the United Kingdom.  I wish you success.  Please try to keep us informed as to your progress in this situation.  Thanks.

Jim 

[Derek]

Hi Lou...

I also reside in the UK and have previously raised the matter to which you refer within the 'Top Tips For The Watch and Wait Brigade!' 'sticky' topic in the 'Watch & Wait' forum specifically for those of us who depend on the NHS for our health care needs.

I have successfully used the following system for the past 5 years. Under the terms of the Data Protection Act 1998 you have the right to access your personal health records. Make a phone call to the Records Department at the Hospital which carried out your MRI scan and request that they send you a form headed 'Application For Access To Health Records' which you complete indicating the nature of your request and that you require a copy of the MRI scan CD and neuroradiology report. There is a nominal fee of about £10 and you should have the requested material within a couple of weeks. You will then probably have your results before your consultant gets them!!

If you require any assistance with this please do not hesitate to contact me.

Best Regards

Derek

[Lou]

Mike, your right. I agree with you completely, however, I have never seen anyone but my GP and the ENT specialist, so this is why I am going back to the GP and ask for a different ENT and see where we go from there
Loud

[Lou]

Jim thank you as always for your never ending support. 
Lou x

[Lou]

Derek, my issue with requesting the information is what do I do with it when I get it? My GP , when I first went to my GP after  I was told by my ENT that I had two little findings was a phone call to me at work to say, oh the result is you have two brain tumours. So obviously  I don't want information just given to me. I need support, advise and guidance from people who know what they are talking about. Everything I know about our condition, I have learnt from you and all of the other outstanding members on this site
Lou x

[Derek]

Lou...

'Knowledge is King' specifically when dealing with AN's. Once you have the CD of your scan you will be able to view the images and in conjunction with the neuroradiology report you will know EXACTLY what your situation is. If the report indicates anything adverse then you are in the unique position of being able to demand an early consultation with your specialist. Conversely, if the neuroradiology report indicates no specific problems are apparent then you can relax and just await await your NHS appointment.

Regards

Derek

[Lou]

Thanks Derek, the issue is, I never get follow up appts. I have an ENT Dr who thinks that everything is funny and is to busy to give you appts unless you cause an absolute scene. GP doesn't know about facial nerve neuromas and didn't understand the last report... So hence wanting a different consultant

[Derek]

Lou..

I never rely upon the NHS admin system relevant to follow-up appointments and personally contact my consultant's secretary ensuring that an appointment is scheduled having previouisly obtained a copy CD of my MRI scan images and corresponding neuroradiology report. That is the unfortunate downside to the NHS system and you have to take the initiative to ensure that your requirements are met. It is not an easy exercise to switch specialists but you could of course consider opting to pay for a private consultation.

Best Regards

Derek

[Lou]

Derek, do you see a neurology specialist as well. That is one of the things I think i shoule be having
Lou x