Consultation /GP Notes

[shiftzz]

In Leicestershire,after every consultation, the note sent to your GP are also sent to the patient...In their views all notes should be transparent..

I now have a large folder..

Is this standard?

[lizk1993]

Hi there, I don't get them. I have to ask just to get blood test results, though they're pretty good at giving me a print out of them. I think it would be great if all departments did the same as yours.

Liz

[Rachelthepotter]

In theory yes, letters contaning results get copied to GPs and patients. The problem is that it can take so long for a letter to get typed at hospital, copies posted second class to the local aematologist , the GP and me and then scanned into the record system at the GP surgery and at the hospital. When I go to the GP surgery whoever sees me often has no idea that I have myelofibrosis, what myelofibrosis is, or what the last blood counts or medicstion changes were.

I still remember vividly the forst time I went back to the excellent local haematologist who had referrred me to Guys , after I’d been seen there, and asking him if he’d heard anything back from them. “Not a dicky bird”, he said sadly. So I had to explain as best I could what I remembered from the consulation and what might be happening next.

Th clinicians are excellent, but the processes for keepng everyone informed are woeful.

The patient ends up being the communication link, but if they haven't been given the information themselves ....

[francesb in reply to Rachelthepotter]

Totally agree. My letters take at least two weeks after the consultation to arrive with me and the GP. Best wishes, Frances.

[jane13 in reply to francesb]

2 weeks! that's super-fast!!

[Rachelthepotter in reply to francesb]

Thanks , Frances. It all adds to the stress and tension.

[francesb]

Hi, every patient can ask to be sent copies of any correspondence about them. I don't keep all mine any more. Best wishes Frances

[Sand-Dancer]

Hi shiftzz. I live on Tyneside and get my copied letter two to three days after my appointment. I too have a large folder 😊

[skipperL]

Letter to my GP from the haemotologist take four to six weeks for him to receive as apparently they get sent to India to be typed. I do get a copy, but am no longer able to get printouts of my blood results, I have to ask my haemotologist. All very frustrating.

[beetle in reply to skipperL]

Are you serious about them being typed in India😲?

[shiftzz in reply to beetle]

Yes so are mine..Mine got mixed up and they advised my GP that I was suffering from Parkinsons and they were suggesting that I start Hydro, which I had been on for over two years... This came up on my pre-med for my gallbladder removal.. A worry, I managed to get the records sorted,

[beetle in reply to shiftzz]

😲😲!!

[skipperL in reply to beetle]

Yes - it's hard to believe - but it's a cost cutting process! And this is at a top London Hospital..........

[francesb in reply to skipperL]

Could you ask the consultant to tell you the most relevant results individually at each meeting and note them down? I take a notebook for this purpose every time. Best wishes, Frances.

[skipperL in reply to francesb]

Yes I do - he gives me the most relevant results, but a printout shows many more results than he has time to list - and its good to be able to keep tabs on everything!

[Inca]

I have a huge collection of every test,X-ray,M R I scan given to me after every consultation for nearly 8 years now ,needing a filing cabinet soon!I think every one should be given their results every time,my blood is monthly,then it is easy to look back over the time since diagnosis.Makes sense to me..

[HardwareHarry]

Never once have a had a copy of a letter from the hospital or from my GP. Other consultants are better - Prof Harrison I always get a letter from, even if there is nothing substantive and she sends to my GP and copies in all the various consultants. All I can say is that I wish everyone was like her! I’m pretty sure that she is st least as busy as anyone else, but still manages to make sure these things happen.

My local hospital is the worst (despite being one of the largest teaching hospitals in the UK) - my medical file is a massive brown folder, weighing 2-3 kilos that has to be moved around the hospital. Often I end up at my next appointment waiting for an hour or more for my notes to arrive from the last consultant. Sometimes they just give it to me and tell me to take it between appointments.

I was recently added to the hospital’s online portal that gives a access to notes, appointments, results and it is COMPLETELY EMPTY! Not a thing on it - if they ever lose my paper file I’ll probably cease to exist.

For the letters I do get, I have a multifunction printer/scanner, so I just scan them, archive them on my home network and sync them to Dropbox so I carry every piece of documentation with me via my phone or iPad. All blood results - they never give me the actual results - the best I can do is either they will give them to be verbally or I grab a quick photo of the results sheet on my phone. All blood tests get put into a spreadsheet and again that goes on to Dropbox so I always have access to it.

[Swede]

No, I dont get any. I have my own little book that I write down the results in but nothing from the Doc.

[Cmg5935]

In the States I believe it is standard. I am sent an email copy of the consultation letter from my hematologist to my gp. Also, each time I see the hematologist I am given the blood results from that day in a printout that includes a chart with my past blood work results, so I can see the comparison from visit to visit. It super helpful for monitoring my progress and keeping records

-Christina

[Ovingite]

Some of the replies here are horrific, but not surprising. I always make a voice recording of every consultation on my phone, so I have a record of everything that is said. I replay it when I get home and make summary notes for my files and store the recording. It works for me!

[AndyT]

Always get mine from LRI - normally about 7-10 days after my appointment

[shiftzz in reply to AndyT]

Yep. they are good, but, always running late,,,

[AndyT]

Having attended clinics elsewhere I don’t think the late running is unique to this clinic and at least the treatment is good when you do see them!

[skipperL in reply to AndyT]

My consultant is always exceedingly late - but he gives everybody as much time as they need and is so supportive - no one could possibly grumble.