Advice would be really appreciated in relation to getting my full GP medical records

[robertbob]

Hi

I dont have Lupus but am being treated for a couple of other dastardly autoimmune disorders and have found the Lupus site here one of best sources of info.

Getting a diagnosis and treatment where I was in Wales proved to be a complete nightmare. I want to possibly make a complaint and also possibly feed my experiences into research aimed at improving the diagnostic process for autoimmune diseases in general.

BUT

I received my (or a part of my) GP records last week and there seems to be more holes in the record than information provided. So I would be really grateful if folk could let me to know what should be there, so can get better idea of what has perhaps been held back. Including what kind of info you were given.

What was not there included:

1. No referral letters to consultants or for investigations

2. No notes at all relating to GP consultations I had. Is like they never occured. Should there not be some note made after each consultantion and maybe during it (including under GMC guidance), recording what was said, decided etc?

3. Apart from copies of test results, there is nothing that records the GP's clinical findings or thinking about what is or might be wrong. For example, there is no note subsequent to my consultant writing to GP saying what he thinks could be wrong.

4. No notes of phone calls, like with hospitals.

5. No notes of GP discussions about my case.

Thanks very much for any help you can give.

Kind regards

[Lisalou19]

Hello there,

Whilst I can’t directly answer your questions, there is a lot of information on here about the lack of medical attention in Wales.

I will attempt to copy link to you but also can search in the search bar and it should take you to some links x

[robertbob in reply to Lisalou19]

Thanks. and thanks for link. Wales does not seem blessed with a good health service atm for sure.

[Lisalou19 in reply to robertbob]

It’s very sad to read especially this day in age x

[Lisalou19]

healthunlocked.com/lupusuk/...

[Wendy39]

Hello Robertbob

I can email you the draft letter I use.

I specifically ask not just for the computer generated stuff but ALL notes.

I have never seen any notes in mine about telephone conversations between Dr and/or GPs but presumably they do make notes.

Anyway I’ll let you see my letter and anything else, just ask.

Wendy

[robertbob in reply to Wendy39]

Hi Wendy

Thanks. that would be great.

[Wendy39 in reply to robertbob]

Sorry for the delay, had to get Word etc back, after my laptop gave up the ghost last week. You should have it in your inbox now.

[robertbob in reply to Wendy39]

Thanks; thats great. Sorry to hear about laptop. Hope its fixable.

bw R

[Wendy39 in reply to robertbob]

My 15 year old son came to the rescue and saved my data and photos etc- laptop has had it. I am sharing his. Luckily for us, computers are his thing. Hope the letter was useful.

[robertbob in reply to Wendy39]

Glad to hear saved data. That's the main thing. Sounds like your son is a great help. Ive written letter of complaint and will give up-date.

thanks again

R

[Wendy39 in reply to robertbob]

Thanks for letting me know. Stay in touch. Wendy

[robertbob]

Hi Tufty123

Thanks so much for your reply and the really useful practical advice. Is also great to read that I have not been quietly nashing my teeth without good reason.

You say that all medical consultations have to be recorded by law. This sounds like really useful info. Do you know if that is explicitly stated in statute or statutory guidance or is provided for in case law from higher court decisions; and do you have the refs please?

Thanks again for help. Much appreciated.

bw R

[Cann]

I was told when I questioned all the gaps in my records on requesting them, that we are not entitled to all of them only what they choose to let us have for our own good. Quite honestly, I was fed up with the whole system and I rarely go to the doctors now, let alone take toxic drugs that cannot possibly suit all of us when we are all different.

[robertbob in reply to Cann]

Hi

Im sorry to hear you had that experience. I think they are required to give specific, strong and well founded, reasons for witholding information. You could maybe phone up the help line of the Office of the information Commissioner for advice on what can be withheld and under what circs. The helpline can be pretty good I think. In fact, it just dawned on me that I should phone them up too!

I can understand 100% feeling fed-up with the system. I assumed it worked until I really needed it and then found out it didnt.

tc R

[Cann in reply to robertbob]

Me, too, they almost killed me in 2000 with the wrong drugs with my penicillin allergy for a supposed infection which was actually pieces of internal dressing stuck to my insides for six weeks after the dressing was removed.

I developed terrible symptoms of allergies and lupus. My weight plummeted to 5stone 10pounds and they thought I was going to die.

However, I found the spirit to go through the complaint system before I died, as I thought I was going to, to find out the real drug they gave me when they lied about it and I knew they were lying.

Luckily I found marvellous complementary practitioners that helped with the gut, liver, kidney, pancreas, etc. damage. I learned so much and really don't trust the conventional system any more with losing my records conveniently and changing them to cover for their mistakes.

The Ombudsman eventually found out the name of the drug they gave me and they shouldn't have with my records clearly stating penicillin allergy. I received an apology from the hospital eventually about 9 years after.

Thanks for the info, though, I will keep it in case I should need it, but there are other ways to get well or heal and the conventional system for me certainly wasn't one of them! Take care and good luck with acquiring your records. Let us know how you get on - I will be interested to see.

[robertbob in reply to Cann]

Hi

I know that conventional medicine can be a life saver for a lot of people and in theory should help everyone. But, similar to you I think, I find it hard to trust it and the health system anymore and am focussing on life style approaches - like regular exercise, enough sleep and good diet - and it seems to be helping. Maybe my imagination, but I feel that the brain fog has begun to lift a bit for the first time in a couple of years and wonder if the omega 3 etc, and other neuronal building blocks in diet, have contributed. Cant have done me any harm anyway.

Hope things OK for you atm. And will let you know how the quest for my medical records gos.

bw R

[Cann in reply to robertbob]

I am sure life style approaches help especially if we can find what is right for us with all being different.

Look forward to reading how you get on with the records.

[robertbob]

Thanks for all the additional and very useful advice. Hope u are doing OK today.

tc R

[Cetus]

robertbob

If you don't have a copy of something as basic as correspondence and clinic notes of a GP consultation then I have a feeling someone at your GP's surgery just pressed the wrong buttons when creating a copy for you.

There are some exemptions to what an NHS provider gives you as personal data which the Infomation Commissioner's Office (which you mentioned below) can explain on the phone. Basically the NHS can withhold info that might cause you distress (such as unexplain test results) but may have to justify what they do withhold and the bar is quite high. Also data in an "unstructured filing system" such as a Post-It stuck to someone's PC is excluded.

The rest you should get. You can complain to the Info Commissioner's Office who will contact the NHS provider for you but the process is slow and will take several months.

Many GPs provide online access to your notes (mine does) which might let you establish what missing data there is. This does not replace your right to a copy of your data.

There is also some guidance (Dept of Health? BMA?) suggesting a patient may prefer to come in and see their notes online rather than have a full copy.

[robertbob in reply to Cetus]

Thanks for info which was very useful and apologies for delay replying. I thought I had! Maybe I did in my head. Ive now made a detailed complaint and will see what happens. tbh I have no idea whether the missing info has been prinicipally lost, inadvertently not provided (perhaps as result of pushing wrong print out button like u suggested), or is being withheld for other reasons.

thanks again and hope u doing well

R

[cpidoc]

I suggest that you ring the Information commissioner's office, they will be helpful, I think. Good luck.