I asked this on my blog but have become more interested to know because of people's responses - Cathie's in particular. I think my GP will be irritated when (if) I ask for copies now so it would be good to know if its more common than not to be copied in.
The paternalistic approach? - how many of you get gi... - NRAS
The paternalistic approach? - how many of you get given copies of your consultant's letters?
52 Replies
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Hi Tilda,
I get a copy of all correspondence between my rheumy consultant and nurses and my own GP - I didn't specially request it , it has just always been so.
Thanks Mags - useful to know. TTx
Hi Tilda
Ive never had any copies of anything sent to me from either gp or hospital!
Didnt realise people did.
Jo
Xxxx
Good evening! My consultant always dictates his letter to my GP at the end of my appt with him, and I also get a copy in the post. Don' t have a rheumy nurse and I can admit to sneaking a look at any letters of referral I collect from GP. BTW my spellchecker keeps trying to change GP to God! Honest - how cool is that? xxx Virge
hi my rheumy sends a copy to my dr and i get a copy from her but i,am sure if you asked rheumy or dr will send you one xxx
The first couple of times I saw the rheumatologist I got sent copies of the letters. Lately I have had to ask her secretary for a copy. I also ask my GP for a copy of all my blood tests. it means if I have to see another consultant I have all the info at the ready. I now have a large file on me, helps me feel I have some control in whats going on. xxx
Yes I think this is so important too. I get copies of blood tests shortly before each consultation but they don't go back too far - I've filled the rest in myself because I usually phone reception and ask. I keep them in a folder but I think I'm going to get more assertive from now on. I plan to give my GP surgery a bit of a polite but firm nudge on Monday morning - a birthday woman's prerogative! X
After Earthwitch's comment on my blog I have decided to just ask for a copy of the last letter my consultant wrote to my GP which he's never read to me at all. Then I can tell him that I would like copies in future without having to pay £25 for the privilege! Also I can explain that I need it in order to know what to say and ask of the new consultant I see in ten days time. Thanks all for your responses you are magnificent! and sorry ive posted this question twice by mistake. son is on my laptop so im forced onto iphone! TTx
My Rheumatologist did a "special" very watered down letter for me that was different to the one sent to the GP. My GP is fine with copying the latest letter on the spot for me during a consultation, though I try not to make a big issue of it, and just ask casually (and only for one thing at a time).
I'd say just ask, and don't give a reason. If GP asks why you want them, throw it back to them and ask if there is any reason why you shouldn't have a copy for your own records.
I have had problems getting copies of notes in the past though, because it is perfectly acceptable in the NHS to withhold notes from patients on the basis if the doctor thinks it might negatively affect you in any way. Also the procedures for formally requesting notes make it a really big deal here, and can end up costing quite a lot - especially if you keep on wanting updates when you already have the bulk of the notes, and they are charging flat fees for it.
Yes I will ask him for the latest letter but I will be open with him about my reasons because otherwise he will frown and look a bit worried probably - and I like to work with him and not try to be too cool or brisk with him. If we have a chronic condition such as RA it's important to get on well with our health care professionals I feel because we are in this journey for the long haul and need them on our side and need to trust them and feel they trust us too.
I didn't think the NHS were allowed to withhold anything because of the freedom of information act? I can see how they might make things awkward but not refuse a patient's request to see their medical records in full? Shocking about NHS Orkney charging flat fees for notes at £25 per shot?! Tilda
I sometimes get copies, and sometimes not. It all depends on the rheumy's secretary, as the last one did send letters to patients automatically but current one is not quite so on the ball. However, usually my GP has been fine about me asking for an informal copy since my GP positively likes patients to be involved in theirs own healthcare, and be clued up on things. Except that she's so busy that doesn't have the time to press the buttons to get the letters up on screen, so I have sometimes just asked receptionist...
Is Scotland is covered by same legislation on this? Down here you do have a right to make a subject access request to see or have a copy of your medical file, and it has to be provided unless the docs think it will affect you negatively (although this can be challenged, so docs should only use this exception as a rare thing). But they can charge up to £50 if you make a formal request, and if you want a copy.
However, there's nothing to stop you making an informal request just for the consultant's letters, and them giving you a copy of a letter here and there without having to pay (or certainly not more than a couple of pennies to cover the photocopying costs). So generally I agree with you that it's best to start with the informal route, as the relationship is more important right now than having the bit of paper. Px
Thanks Polly. I am sure the legislation is much the same here in Scotland - its just that protocol differs from one place to another as it does in England. So Grampian isn't the same as Higlands isn't the same as Edinburgh or Glasgow even.
But the right to access will be exactly the same since we are talking National Health Service and we are all part of the UK still! I feel much better for thinking this through now and will explain to my GP that not having things like letters in black and white is making me find it hard to accept this is RA. I'm so literal (but also suggestable!?) and need to see it written down for myself. I believe the rheum and my GP do trust me not to overreact or come off meds or anything silly and I think if I spell it out very frankly to him my GP will take the same line as yours re responsibility and team work. But exactly the same thing applies to him having time to press buttons or wait for printer as he's a sticker for the ten minute consultation and has to be booked ages ahead too. Tilda x
every appointment I go too,either consulatant or rheumy nurse,I get a copy of what was discussed etc etc.i don't ask for it,they just send it to me Nd a copy goes to my gp,I keep them all as may come in useful in the future.take care Michelle xx
Good for you and lucky you too! X
I have copies of all consultants letters, you can ask at hospital for these.
According to Earthwitch you have to pay a lot for this service and it takes ages though so will just ask my GP on Monday. Thanks - any news about your dad? Tilda x
Hi Tilda, I did answer your original question but just reiterate you are entitled to see the notes about you and get copies of any letters written without having to pay a fee for it. If I was asked to pay £25 for a copy of a letter about me, the surgery would fall down with the explosion!
I know what you mean about your dad standing up for others but not so good for himself. My dad was exactly the same - like a tiger if anyone in his family was threatened in any way, fought tooth and nail to get proper treatment for my mother (being a pharmacist probably helped) but when it came to himself, particularly when he got older and frailer, he couldn't really cope and it was left to me to fight his battles and reassure him. Tables were really reversed.
Been up since 5 with a bad asthma attack - quite frightening - been sitting downstairs in my recliner and having to use my blue inhaler. Just discoverd I should have taken all the steroid tablers in one go - I have been spacing them out!
Love LavendarLady xx
Sorry to contradict, Lavendarlady, but NHS services do have the right to charge for providing copies. The following link says "you may have to pay a fee" and then there is another link that gives a scale of fees
nhs.uk/chq/pages/1309.aspx?...
Just looking at your records doesn't always have a charge, as long as the most recent entry is less than 40 days ago, but getting copies can be as follows:
"Fees to get a copy of health records
If you want a copy of the health records, the fee will depend on how the records are stored:
on computer: maximum £10
partly on computer and partly in another form: maximum £50
entirely in another form: maximum £50"
In my case I wanted a copy of an xray that was on computer, plus a copy of the report (that was in the file) and they charged me £20 - £10 for the computer record, and £10 for a single sheet of paper!
And those charges are for every time you request records. So you could ask for one lot this week, pay up to £50, and then next time you have a clinic visit and want the report, blood tests, xray results etc from that, they could charge whatever the minimum is set for your NHS region. So far I have paid probably close on £200 for records because of that system of charging, though I have on occasions challenged it and ended up paying "actual costs" , i.e. basically cost of photocopies.
Hi Earthwitch, I have never been charged anything for copies of any documents from my GP/consultants/ x ray etc. Perhaps I have just been lucky. The only time we were ever charged was in my law practice when we requested copies of hospital notes for court cases. The GP surgery did once try to charge me £12 for a letter but got told where to get off in no uncertain terms, was reminded i had been a patient since Dr. Outred (now retired) started the practice and If they thought I was paying £12 for a standard letter they had another think coming! They caved in.
As a lawyer I can argue black is white and the wording "may" suggests that it is a discretionary charge only which can be challenged. I think you are absolutely right to challenge and only pay the actual cost of the copying - something in the region of 10p!
You could always offer to take it away and photocopy it yourself! I must admit I take great joy in challenging all sorts of beauracracy and annoying everyone whilst doing so but it gets results to make a fuss.
Freedom of Information requests are usually charged though and that does vary depending on who you are contacting and what it is about.
Best wishes. LavendarLady x
Oh no Lavender Lady - I made that mistake too with Prednisolone for my RA! I thought they were administered like NSAIDs at regular intervals. The weird thing was that after 2 days if this I was finding each middle finger joint was taking it in turns to be heavily pregnant and incredibly painful. A GP friend of mine was staying at the time as hubby was away and she put me right about how to take them all in one go first thing in the morning.
Poor you being so wheezy - I've only had asthma attack one after birth of my son but it was very scary. My lower back is very sore and hot again today and my body aches horribly - think it might be RA after all. Tilda xx
LavendarLady in reply to
Hi Tilda, sorry you are feeling so rough - this RA is really no joke. Try hot and cold packs on your back and put your feet up - I find that works for me. Hope it eases off soon, (I got your message, thanks and have responded). Love LL x
in reply to LavendarLady
Do you think it is RA then LL or do you think I've just overdone it somehow (not sure how because everything I've done has been the same as always i.e exercise on wii, walk the dog etc). Someone suggested that what I thought was a boil on my nose (it's gone back to red blemish now!) might actually be facial shingles? If it is it's not very bad but it has made me think a little? TTx
LavendarLady in reply to
Hi Tilda, it could be - difficult to say. You may have just overdone it and got chilled and damp. But I sometimes find that the RA seems to trigger something else off and cause aches and pains elswhere.
I should get the boil in your nose checked out - it may be something and nothing but always worth getting it sorted.
Hope you are feeling better today. Love LL x
in reply to LavendarLady
Thanks- its definitely not a boil LL. Its quite sore to the touch and comes and goes but never completely? My instincts say its connected to the MTX and moving down from 3 folic a week to one. It seems to tie in with the weird spots I have been getting again on my face - like large bites or blisters. I am fairly sure they stopped when I started taking more folic and have come back now I'm on only one. But whether I can convince my GP of this who knows - he seemed to think one a week would be ample. Its the most annoying thing about not ever seeing a specialist nurse but hopefully the rheumy will know more when I see him on the 18th.
Tilda xx
LavendarLady in reply to
Hi Tilda, I take folic acid 6 days a week - My GP tried to say once a week was enough but was over ruled by my consultant who after all is the specialist and should know best.
Do have a word with your Rheumy consultant when you see him. Is there no Rheumy nurse anywhere that you can contact for emergencies in the Islands? I would have thought the consultant would know or am I being naive here? Good luck anyway. Try also some antiseptic cream on it regularly. Might help. Love LL x
Hi, I get copies of all the letters between my 2 x Consultants and GP, I didnt request them. Take care Ann
I ask for a report from my first Rheumy appointment, My rheumatologist was really happy that i had ask,and said that that is what they do this with all their patients and that i will be sent a copy and also my GP within a week, included in that would be my blood results,
Remember you entitled to this, Also my GP will pull of any report that i want while i am there, She only said the other day, Remember Shirley you are the boss now, not me or the RA, What ever you need just ask... I really hope you have the experience like i did, But don't be worried about asking, They are being paid to do there job properly...Take care xx
Reply to this
Hi Tilda. Whilst I am with my consultant he will speak in to his Dictaphone and go through the whole thing while I listen and understand what he's saying. He will then send a copy to my GP and one to me, so I think I'm really well informed.
I kind of thought that was standard practice, but apparently not!
I must be lucky.
I suppose a boil on the nose is somewhat better than a boil on the bum!!!!!!!!!!
All the best
Carolyn x
in reply to
Interestingly I had a boil on the bum 49.8 years ago when I was an infant and my mum tried to lance it herself with a disinfected nappy pin! Yes you are a lucky thing. I recorded my second consultation on my iphone without asking him and everyone I ever tell has tut tutted about this but it's been the only thing I've had to actually tell me that I have RA because he says it on my recording! TTx
Hi I asked my rhuemy nurse for copy of my x-ray results she didnt like it and said there was a backlog and it would take months for me to get them.i have always had to really fight to get any copies from hospital.
Regards Sharon
I think we should all gang together and make sure that we enforce good practice on this.
I dont understand where paying for this comes from - I would never accept this.
It really isnt a big deal. Filing systems in hospitals and GPs surgeries arent infallible as I've discovered, and if we bring recent relevant information with us, that can save valuable time and even mistakes. Twice now I have brought documents to a consultation to have the dr or nurse ask if they can photocopy whatever they havent got, so there shouldnt be the slightest need for them to see the point of you requesting these letters.
There should be no need to go to this level of detail - but in answer to the issues about Freedom of Information in Scotland - the first is a general website and the second is about the NHS thing. Should you need to see all your records that's where you go. But there definitely is no issue about getting routine letters and reports and this can only help them to deal with you efficiently
itspublicknowledge.info/You...
XXX
I fully agree with you. We should not have to pay anything at all to get copies of our own records - they are about us after all. I think we should all make a point of asking for copies routinely. My surgery frequently manages to lose letters from consultants but do eventually find them again and let me have a copy.
Copying costs only a few pence. Lavendar lady x
Hi, I always receive a copy from my rheumatologist and have my blood. Test results in my mtx booklet. I did notice a poster in my hospital that said all patients will receive a copy of the letter that would be sent to your gp.
Well either you're a lot of lucky bunnies or Earthwitch and a few others on here and I have drawn the short straw in this regard! I think it's the latter though because no one who lands RA is that lucky. It makes me realise how poor things are up here in terms of a paternalistic approach to patients. I will talk to my GP about it on Monday seeing as he's on the health board too and tell him what I've learned on here about letters and the respect that patients in other health authorities are shown. Thanks everyone for telling me how it is elsewhere! Tilda x
I have always received copies of letters that my rheumy team send to my gp. They dont always include blood results so I ask the hospital to complete my mtx patients book even tho im now on injections so dont need them. However I did ask my gp phlebotomist to write some results down and she said she couldnt access results.
Surely if we r to b responsible for monitoring our diseae its important we r kept in the loop with all correspondence onn us.
Tina
in reply to nottsexsportfanatic
I completely agree. There was a survey on responsibility from NRAS quite recently and its the new buzz word for health. So I will make the pint to my GP that our health authority needs to wise up here. Mind you I am one of only two patients in my whole area who takes MTX by injection and that was at my instigation, as was taking Hydroxy too. So being left to run my own treatment is quite a responsibility and has forced me to do a lot of research. I think the GPs know that this is a good thing and will surely see that I have more than earned my right to copies of those letters! X
Tina, on your reply it reads as if to say you don' t need monitoring as you are now on injections. Assuming you mean mtx jabs, how come? If I am a week late with my blood monitoring I get a letter from my surgery . - and I have been using metoject since March. Virge
helixhelix in reply to
When I was taking MTX by tablets I needed the patients' monitoring book up to date to show the pharmacist, as otherwise she wouldn't hand over the prescription -even tho' the GP had issued the prescription.... But now I take it by injection nobody but me ever looks at the monitoring book, but I do like to keep it up to date. Polly
nottsexsportfanatic in reply to
Sorry if my reply was a little confusing but Polly explained why I no longer have to record results. I still have monthly blood tests. Apparently thats only for the first year though. My consultant said come march I will move to tests just once every 3 months.
yep,
I get copied in across all my appts- without asking, seems to be policy here both for Rheumy consultant and gynae- never get anything from the nurses clinic though even though based at the same hospital (Hartlepool and north tees).
Polly x
Well I don't possess an MTX blood monitoring book and I doubt anyone would notice if I failed to book an apt once a month - I like to think I'm wrong but they just seem dead laid back about it all here. Mind you whenever my liver has been raised my GP phones on same day and tells me and they gave me the 2nd flu jab in my area with great entusiasm so they have some sense! X
I appreciate I am probably being thick and, sorry Tilda, for highjacking your question, bit I am really confused about this non-monitoring when on metoject. I know this means less side- effects as it by- passes the stomach but does it mean overall toxicity is reduced? ie, less damage to liver etc? is wine back on the menu? if so, YIPEE! Xxx Virge
nottsexsportfanatic in reply to
I am still having monthly monitoring at the moment. But since moving to injections my blood resulrs are much better. My liver is out of the red for the first time in 6 minths 
not sure if it is therefore less toxic to us in this format.
helixhelix in reply to
Errr, I think it's the opposite - sorry! You get less side effects that relate to stomach & digestive system, like the nausea and horrible acid stomach. But it goes straight into the blood stream without being chewed up by the stomach so it is more effective, and if anything I think that means it's more toxic as you (and your liver) get the full dose rather than whatever your stomach lets through. I was on 20mg tabs, and now am on 15mg injections, so in theory I'm taking less. But It feels as if I'm taking more! the first few weeks of injecting I felt as if I'd been hit on head with a hammer the day after. So wine is still a distant memory..... Polly
No of course not Virge! I am on same monthly monitoring as I was in with tablets but I am not monitored for how effective my medications are or told what the consultant's letters say. I make appointments to get blood taken from either my GP or the practice nurse. If anything the Metoject is more efficiently and rapidly absorbed therefore the potential toxicity is greater. That's what my rheum told the GP anyway. X
dapper in reply to
im surprised you dont have an mtx book for blood tests ,when i was on tablets my pharmacist asked to see it before giving me the prescription ,not quite the samr having injections delivered but the hospital always check aswell ,even though its all on pc directly ,i always have a letter sent to me aswell as the gp from apts ,by the sound of it my surgery and hospital are one of the best
in reply to dapper
Yes be thankful for this Dapper. But then I don't need an MTX book really as my GP prescribes and monitors me and I just collect my Metoject from the pharmacy every six weeks so it is all organised after a fashion. I live on an island off Scotland so can't and wouldn't expect things to be quite as bureaucratic as they have to be elsewhere because so few members of the population here are on these drugs! Tilda
Hi I have just gone onto 3 monthly monitoring of bloods as my levels have stayed fairly constant for quite a long time now. This was suggested by the Rheumy Nurse at the Hospital. She has so far as I know, written to my GP surgery to let them know and my consultant was happy with the new arrangement as well. I still have my MTX blood results booklet which is kept up to date by the practice nurse. Funnily enough the hospital won't accept what's in the booklet and I have to get a print out of my bloods from the surgery - computers rule ok? Why they just can't e mail a copy through to the Rheumatology Dept at the hospital is beyond me. Lavendarlady x
thats what happens with all my results ,direct to the surgery and the hospital ,i then get my book filled in by the nurse at the surgery to keep
My idea would be our own patient care plan that we can take to appointments and they can fill in. It should include blood results, X-ray results,pages to document main results or points of each consultation and a pge for OT, physio to write their assessment, like baby health records and then if the doc writes you have to have a eg bone scan and its not done at least u have written evidence. And yes I get copies of letters love Axx
brilliant idea Allanah - perhaps we could NRAS to follow this one up? LavendarLady x
Victoria-NRASPartnerModeratorNRAS
Hi all
We did actually produce a care plan a couple of years ago. We no longer produce hard copies of it, but it is still available to print from our website:
nras.org.uk/help_for_you/pu...
Kind regards
Victoria
(NRAS Helpline)
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