Letters from hospital: I have had two letters... - CLL Support

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Letters from hospital

jangreen profile image
8 Replies

I have had two letters from the same hospital but from two different depts. One from the haematology dept one from pallative dept. Although I know that these are copies of my GP's letter and are therefore meant for a Dr I like to get them to stay informed and also to ensure that I have not got anything mixed up or forgotten something from either consultation. The difference in styles and content could not be further from one another. The specialist haematology one is mostly repeats of previous letter (blood counts on presentation-4yrs ago chemo-2yrs ago ect) its technical information which isn't relevant to today (I know past history is important but its all on file)but very limited information about my current blood counts or about my current health. I have asked if the letter could be revamped but got a negative response. The pallative one however is written in a style and vocabulary which are easy to understand. Its informative, confirms medication and brings a feeling that the letter has been worth writing and receiving. My husband once had a letter from the hospital which neither of us could understand and he had to go to the GP to make sense of it. When consultations tend to be about 10 mins long its important for every min to count and I know that I try to approach them as if they were an important business meeting.Do others ask to get copies of letters and are they helpful?

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jangreen profile image
jangreen
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8 Replies

I've had two such letters. The first, which I had requested a copy of, was upon initial diagnosis and contained the bare facts. The second, after a mystery illness that earned me a week in hospital, contained a brief summary of the past and then covered the hospital treatment.

My wife had breast cancer a few years back but never received copies of any communication between the surgeon/ oncologist and the GP. However, she visited the oncologist recently and it was decided that she needs a full body bone scan. The copy of the letter that we received was really quite detailed, covering the history of diagnosis, operation, further removal of lymph nodes, the type of chemo and radiotherapy and all the drugs she has had since. It then went on to detail the reason for the scan.

With both of us visiting the hospital, it is nice to occasionally have this detailed summary but it is not something I request after every watch and wait review.

You mention that everything is on file...a few visits ago, my file could not be found. Either they had lost it or had a clean out because now the file contains just a few pieces of paper. My wife visited the oncologist about a year after finishing radiotherapy and was told that now five years had passed, she would no longer need to be followed up by the oncologist. It was her name on the document but someone else's history.

littleriver profile image
littleriver

My consultant who I saw for the first time on my third visit to the hospital copied me in on a report to my GP ,It was clear in plain English and left me without any further questions at this time, however my two previous visits i was seen by other Drs who were pleasent but left me with unwarranted fears.

David39 profile image
David39

I have CLL checkups at both my local hospital and Barts, and routinely receive a copy of the letter to my GP from Barts. They're succinct and contain only salient detail, but sufficient for me and give me reassurance about my understanding of the consult discussion we had. They also often, but not always, give the results of the blood test I had done on the day of the clinic which I would otherwise have to wait (currently) 6 months for. I find the letters valuable.

Newdawn profile image
NewdawnAdministrator

I feel lucky in view of how practice can be. I receive copies of the letters my haemotologist or his senior staff write to my GP. They are very detailed, explain what's been done and found/not found and even detail my response. In the diagnosis letter the Consultant talked about the impact of hearing the word 'leukaemia' and how impressed he was that I'd researched the subject to try and bring some balance. He's even rung me at home twice to give me results of the scan etc. and I'm grateful that he has such a personal approach when he's so busy.

I would expect letters from the palliative service to be more detailed and 'human' Jan because they are expected to offer a more 'holistic' response not just scientific details.

I think sometimes Consultants are so busy they can forget we are more than a set of symptoms.

I do have to request results of the blood tests however at consultation but it's never a problem and I'm given the pre-prepared documentation and sample bag ready for my next blood test.

It's so interesting to hear other people's experiences on this.

Newdawn

louise66 profile image
louise66

I too have copies of all the letters my consultant sends to my GP. They are usually just confirming whats been said in the appointment, I am very lucky in that my hospital appointments are not rushed and I have time to talk to my consultant about what changes I have noticed or any other concerns, and my consultant takes the time to fully explain any answers he gives.

I know that I always have to wait over an hour to see my consultant, but I don't have any compaints about that as he gives everyone the time they need.

The only compaint I have is that on the last letter he put my age down as 48 and I'm 46!

Louise

jangreen profile image
jangreen

Hi whenever I leave a blog I'm so impressed with the responses. They are able to give a wide experience. I find this site a great source of information. Thanks for all the comments.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Letters must be a U.K. thing.

In B.C. Canada we have electronic medical records, so my haematologist, GP, pathologist, radiologist and dermatologist all access the same medical record, diagnostic test and notes... it is set up like a timeline and any doctor can add to the central record in real time. All medications are centralized as well, so any doctor can see at any time what medications I'm on.

In the future patients will also have full access, but currently I must request printed transcripts.

Everyone is on the same page...literally. From my experience it works extremely well and my GP says it saves her a great deal of time...

~chris

jangreen profile image
jangreen in reply to Cllcanada

Hi we in the UK were to have this system but the NHS commissioned a new untested system which has cost the earth and has yet to deliver. Hopefully it will come on line soon. Thanks for the info.

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