Patients' own "reports" to doctors

[Taviterry]

When I was awaiting my TAVI, Hammersmith NHS provided remote monitoring, with me filling in an online questionnaire very Monday and giving much the same information via a telephone call from a nurse.

Last November my post-TAVI fatigue was referred to Haematology at my local NHS hospital. I was eventually assessed in March. A few weeks later, I rang up to enquire about a follow-up appointment and mentioned that I was now worryingly fatigued. "Admin" wouldn't let me speak to a nurse, never mind a doctor. The following week, a visiting cousin took me to A & E. Since then I've called an ambulance twice to take me to a day ward; the Haematology consultant in the same hospital knew nothing of the first visit until I mentioned it during a short telephone appointment.

The second visit was last Friday, when two blood results relevant to my condition showed increases – one, for Bilirubin, of 50% in two months. "Will Haematology be told about this," I asked the nurse. All she would say is that the latest results "would be available to them" on my hospital record.

I now have an email address for Haematology and am minded to send them a short report. I also have to email my GP surgery about a minor admin matter, and am thinking of copying it to them.

Has anyone tried this approach, and with what reactions? Do doctors welcome, tolerate or pay little attention to patients' reports?

[Lowerfield_no_more]

I suggest you contact the PALS team at the hospital to enlist their help in getting some response from the Haematology team. That's what they are there for. And/or talk to one one the medical secretaries in the Haematology team. And when you get something back from them in writing of some sort make sure your GP is copied in.

[Taviterry in reply to Lowerfield_no_more]

I'm unsure as to how contactable the medical secretaries are! Since my first post above, I've drafted a note to my GP, to be sent tomorrow and including the "minor admin matter", pointing out that in the small print of my discharge letter to her, "SEDC" (Same Day Emergency Care Department), has recommended a Liver Function Test to include Bilirubin at the end of October. I'm asking that I also have a Vit D test as I'll have been taking supplements for three months then. (NHS does not re-test before then.)

Dr Google suggests that I need to increase my water intake to reduce some of my problems, and that seems harmless enough, but I'll mention that in my note.

I like to think that the note is a neat way of taking matters forward, rather than booking an appointment just to ask a couple of questions. And last month a locum GP ("unable to arrange blood tests as I work outside the surgery" ???), delayed an urgent test requested by Haematology.

I won't bother/update Haematology until I've had the results of the next test.

[JHutton1994 in reply to Taviterry]

If you know the name of the doctor you wish to speak to, call the hospital switchboard and ask to be connected to his secretary, Monday - Friday, it's 9-4:30 at my hospital. Morning or early afternoon to be safe.

[Lowerfield_no_more in reply to Taviterry]

Every specialist team (cardio, urology, orthopaedic etc) has a number of medical secretaries assigned to the consultants, and one secretary may handle several consultants. It's basically their job to handle all the administration for the consultants. They have no medical responsibilities and will not provide feedback on medical matters but can give administration feedback for such things as report timing, and appointment booking, but if they are not directly responsible they should be able to pass you on to someone who can help. So simply ring the hospital switchboard and ask to speak to the Haematology team medical secretaries and take it from there. And'if at first you don't succeed keep trying until you get through to a person, although it can be frustrating listening to engaged tones, or ringing tones on unanswered phones. And when you have found the right person make sure you get their name and their internal number in case you need to talk again.

[Taviterry]

Good tip, thanks, and I've found medical secretaries in the private sector to be excellently efficient.

[scentedgardener]

I send an email to my cardiologist's secretary, and I've also done the same with another consultant.With the cardiologist's first secretary I could never reach her on the phone, she didn't respond to voice messages I left and even ignored a letter I sent.

His current secretary is most helpful, she always acknowledges emails and passes on the info to the cardiologist.

Personally I have found emails more use than phone calls, and from their point of view I would think it was less intrusive than the phone, the matter can be dealt with in a timely manner without interrupting whatever they are doing when the phone rings.

[Shabana1974]

I email my husbands neurologist on a regular basis when his health is unstable. She is amazing she generally responds with a phonecall to ask further questions. Then increases his medication accordingly.

Sometimes she just responds to the email with medication change. But it's a good way of getting the relevant advice from the drs

Best wishes

Shabana

[Taviterry]

Thanks for the replies. You seem to have had more luck than I do when I'm trying to contact Haematology. In the past 21 months of medical problems I've been very respectful and appreciative of the NHS, and the only time I felt "entitled" was when I wanted to update someone about my anaemia and couldn't.

And the irony: following my hospital visit on Friday I've just received a letter from Cardiology giving me a check-up date for November 19, whereas I would rather have had the one with Haematology originally scheduled for early November, now due on December 3! On Friday when the doctor said he would refer me to Cardiology, I should have pointed out that the very first person I saw about my fatigue was my heart surgeon last November, who could find nothing much wrong with my heart. Which perhaps confirms my original inference that quite often we patients need to "link" up reports from people looking after us.

Still, the check-up won't do any harm. After my private TAVI, the surgeon wanted to give me a yearly check-up (at a cost of £750), so I switched to NHS aftercare, where I have the impression that check-ups are less frequent.

[honeybubs]

Hi Tavitetry,

Couldn’t find an email address for my GP and they wouldn’t give one out to me when I wanted to send info to them so I had the information copied attached to a letter I’d written and posted by hand through their letterbox then the reception staff scan it on your notes for the attention of the the doctor you request and it will be on your on line medical notes and they will answer you if you can’t attach the report on line I would do it this way. Best of luck.

[Taviterry in reply to honeybubs]

I've just checked my GP's website and there's no evident email address, just a telephone number and a link to the newish "Contact us" forms, with their smallish boxes for one's text and a limit of 500 characters per box.

The surgery divulged its email address to me during Lockdown when I had a blemish on my arm. I'd had a skin-cancer scare a few years ago, so I was asked to photograph the mark (easier said than done) and email it to the surgery. Later I timidly asked it it was OK for me to occasionally use the email address, and they said it was OK.

[honeybubs]

good hope it works xxx

[Skiffrower]

When l have an appt at the hospital I always ask for a copy of any letter they are going to send to my GP. I also write a note to the GP after the appt to tell them what I was told at the hospital. This is because in my experience it can take a long time before the hospital letter gets to the GP. I have been doing this for the best part of 30 years after experience with my daughter who had congenital heart defect.

At the very least this should mean that the GP has a record that they should be expecting a letter/ that I have had a hospital appt.

The splitting up into separate trusts has definitely caused issues with extra admin.

[Taviterry]

I've had minor problems with hospitals within the same trust communicating with each other. In the summer I managed to get my after-care and the records of my TAVI transferred from the hospital where I had the op to my local one, this after the latter's A & E could access only the results of a pre-TAVI ECG. A visit to the Same Day Emergency Treatment centre on October 4 led to an appointment today with a cardiologist at the hospital just five miles away. Otherwise I suspect that it would be at the original hospital, involving a 90 minutes' journey on public transport.