Medical history transfers from NHS to private consultations , the learning curve !

[28CS]

Hi folks ,

I could write essays about the journey I've personally had learning to live with the after effects of accidents but it might be more helpful to you reading this , to know how you can benefit from the mistakes I've been through.

Absolutely , this is not about fault nor blame I must stress .

If we go through life looking for the blame and fault apportioning of a situation we often , understandably too I hasten to add , forget to LIVE .

Please , I know you're each fighting your own battles here and possibly registered like myself , looking for that new tunnel to consider asking about after discovering the light at the end of ours just keeps going out despite walking down it as prescribed by every medical expert we've met !

I'm with you all in my heart , living with pain really does make you judge your self , through your OWN eyes , and bugger the eyes of others because THEY can't walk a week in your shoes , no matter how well meaning everyone seems .

SOOO.... you find yourself at another blank end , ask about a second opinion , get advised by everyone to go for it and hang the costs and what then ?

I had this scenario last year after my fourth and final experimental procedure on my spinal cord failed .

I wrote a very cap in hand email to the personal assistant of the most reknowned spinal consultant I could find after periodically researching since a bad motorbike crash in 1992 , and bless her she spoke with the consultant and he wrote back agreeing to meet with me to assess if anything could benefit me from transferring from the NHS to his care for treatment.

I can't travel very well .

I can drop and give you 20 pressups or carry the TV from the bedroom to the spare bedroom if it means my partner gets a good nights sleep.

I have enough fight left in me to do what's right by others even if the pain goes throug the roof , because I'm STILL alive every day so far , and pride and dignity DO drive us onwards , sometimes the only thing that does .

Anyway , what I can't do is sit relaxed as a passenger for longer than twenty minutes without blacking out .

The idea of travelling the two hundred miles by car to be seen scared me silly but had a possible benefit by opening up a new tunnel to work with , hopefully with a brighter light at the end to look forward to as well!

We met , he initially thought I was a diplegic according to his report afterwards , and was extremely interested in the fact that I'd been though the whole mental health sector already , disproving that I could influence my medical issues with CBT , physiotherapist interventions and even seeing counsellors and psychiatrists .

Each eventually gave me a pass out re referring me for physical further diagnosis.

What was important I think from my private consultation , was that after chatting woth me about WHAT happened initially , HOW I live on a sort of daily basis to get by so far, WHO saw me and when to do what , and then , most importantly he threw the book out from my past .

He didn't care who had missed what .

It didn't matter who'd messed what up.

I was in front of HIM right at that point and he COULD offer new treatments that hadn't previously been considered if I was willing to let him try.

What he needed however , was compliance from the NHS.

He asked for , courteously and professionally , new scans of my brain , entire spinal structure , and imaging of the soft tissue surrounding my spinal cord .

Not unreasonable requests eh ?

I had after all spoken with my surgeon about it before being potentially rude in his eyes by going over his head for a second opinion in the first place .

I timed everything for the trip to Bristol from Cornwall to fall before my final follow up with the spinal surgeon who had been treating me so I could report back any information from the second opinion and see if it helped HIM to help ME.

I sure can't afford private treatment and the risk of offending my NHS help didn't bear thinking about after getting this far in 26 years of quite a lot of suffering I kid you not .

What followed was despicable , but sadly , it was avoidable too hence I'm writing this for you all to benefit from .

Initially no private consultation notes were received by the NHS.

My carer phoned the private clinic and was assured they'd posted them physically as back up to the email copy they sent .

All part of the service for someone paying £400 for an hour consultation.

The surgeon I'd been treated by previously has a PA , she consistently assured my carer no such documents had been received and no request for further scans or tests requested of them.

After two weeks of a very frustrated private top spinal consultant waiting patiently to try and help me went by , I'd had enough and had my appointment with said NHS surgeon.

He reassured me no communication had been received .... so I gave him a copy the Royal Spire at Bristol sent me by post as insurance .

He was suddenly very defensive , made excuses for a lack of communication , and said he could help me no farther . Bugger !

Apparently a departemtn in EVERY hospital , private or NHS exists purely for the exchange of medical records called the Disclosure Department.

Three months had gone by before we discovered this , and the lovely lady on the desk said they should have been spoken to by my surgeon , as this was a daily task and nothing out of the ordinary .

My surgeons PA simply didn't like my carers tone when having to get cross about their incompetence when I'd personally gone through a real tough journey following up woth then NHSs alleged support , borrowed the money for the private second opinion , and been discharged by my own surgeon for what ensued .

Please folks ,

This isn't about blame , bugger the money and the adventures ot led to .

What's important here is that you all know there's OFTEN a new tunnel you can go down through seeking additional help outside of the NHS parameters , BUT ...

Unless you know about the hidden departemtn called Disclosures , it won't matter how you ask help from or what you pay to whom .

If you seek a second opinion and existing medical records are requested , please please please , make sure your private help requests this information from the disclosures department or you risk running out of time for any follow up and another light goes out at end of a tunnel you might have benefitted from .

For what it's worth , I had a bad crash that was just one of those things , it was racing .

No insurances for bike racers on the track , no blame , no regrets to live with so I count myself lucky I don't live with hate every day unlike some peop,e who very sadly were injured at the hands of someone else .

Honestly , I feel for you all in that circumstance and yes of course it's u derstandable to feel angry and fouled ! Hence , I think I'm amongst the lucky ones .

Another rider came off , hos bike hit me , I have five damaged vertebrae, over the years three discs have become damaged through not taking it easy as prescribed , eventually leading to being retired from work for the fourth and last time in 2008 .

The experimental procedures MIGHT have worked !

But for me , the knowledge the medical profession gained made it worth the gamble but the scarred tissue on the Arachnid membrane protecting my spinal cord led to the brain disease known as Arachniditis I think it's spelt , resulting in an inability to create nerve repair cells at a molecular level , electrical shocks sensations through my scalp when the damaged pain receptors in my brain short out when I damage something , and still a loss of ability to wake or sleep unassisted due to the physical damage and the chemical result of 26 years of medications which all alter the body chemistry and in an attempt to manage the pain for the damaged bits of my body .

We all , each of , have a fight we try to deal with , but without the proper transfer of medical histories from hospital to hospital , were a little limited as to who can take over what when we come to another stop.

You're ALL worth more , you've ALL every right to smile each day and find your way through your battles , so never quit and the very best of luck in finding the best results for you all .

Best wishes

Mark xx

[28CS]

Ps , there was a chance I'd be able to have an electrical nerve stimulator fitted inside my back to prevent the pain signal from reaching g the damaged pain receptors in my brain , thus preventing gthe messed up routing of sensory nerves from keep flaring up .

It'd need the internal battery replacing every 4 years being the only negative , but the reduction in medication associated with this kind of surgery is immensely encouraging !

That alone gives e. The strength to keep going because someone else is willing to help us and not give up on us .

If we think of it as owing THEM the chance to help as a veritable cause to not quit , it's yet another bad day we were able to get through ; xx

[katieoxo60]

Thank you Mark for sharing your story, I have often raised the issue of records not available to all departments in all hospitals, but beleive the new data system will change this. We cannot get quality treatment if the records are not available or are incorrect, even things like your life status are often relevent. Have a good day understand how hard it must be for you, but as you say blame does not solve the problem, better work practices do, and knowing who to approach when things go wrong helps. At the end of the day it is whats best for the patient that counts not what is best for those administering the treatments.

[cyberbarn]

Thank you very much for your story. There is a huge problem with patient records in the UK, partly because those that hold them don't want to give them up. In other countries the patient actually physically holds their records, and they don't have these problems. Even in the UK maternity patients hold their own records, so it isn't like there isn't a precedent.

As Katie says there is a move to link up hospital and GP records by using bridges, but I have been involved in the network of patients that has been old it will be rolled out in our area 'next year' for three years.

I guess the only other thing that patients can do in the mean time is get copies of everything, and when a secretary says they haven't got the notes, send them a copy directly of everything you have.

And if only we could change the culture between private and NHS so that they work together better!

[morphalot]

Hi Mark - I've had a very similar life to you, in that I had two motorbike crashes and a car crash. I had a decompression, followed by a fusion at L3 and 4. I also had both hips replaced. I was put on morphine for so long that it cumulated in my having a stroke. I now don't speak well, I have poor balance, pretty much no short term memory and partial long term memory. In 2017 I had the neuromodulator fitted, in London. It has enabled me to reduce my tablets, to be awake longer during the day (unfortunately I'm getting pain elsewhere which the implant has no effect on them). My need for sleep in the day is increasing but the implant only affects the nerve it is lying next to. I

foresee more pain in the future. And I'm only 59 (and a very young one at that!) Good luck with all your problems x

[waylay]

I got copies of my entire medical file from my GP, the hospital, and the MH Trust, all digital. It cost me some money, but now I have it all. Interestingly, having looked through them, there are some weird errors in there. One is a diagnosis of alcohol-induced psychosis! I'm not an alcoholic, and have never had a psychotic episode. 🤔