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Let down again

Have just been to see my GP and have come away so upset. This is the GP who said she was totally on my side and would organise a second opinion as soon as I asked.

Well I went today and told her that the neuro psych said she didnt think my problems were psychological but the GP said she would wait to see the report. She had written to my eppy neuro to ask what I could have to help with the pain and when I said I hadnt heard anything she said that my neuro is the type to wait and see!

She then started saying that even pain caused by psychological problems is still real pain. I said that surely if it was psychological it would be there all the time and she didnt really answer. I said I just wanted someone to believe and help me and she just said we would wait until my eppy nurse appointment in october and go from there.

I feel so let down by yet another medical professional and she was the last one on my side.

I want my life back

I am so sorry Nikki. I am waiting for my first Neuro appointment and I am really nervous because of the way I have been treated over the years I don’t want the pattern to continue. My appointment is in October also, we will have to try and keep each other going until then!! Did she give you any help or advice until the next appointment? I really feel for you and at the same time not knowing what to say :frowning: Sam x

Oh no Nikki. Thats a let down.

Is there anyway you can speak to the neuro psych team to say the GP is waiting to hear from them and won’t do anything further until he knows its not psychological. I don’t understand why your GP is waiting for your eppy nurse appointment to decide what pain meds are suitable. Can they not call each other and liase or is that too simple?

I’m so frustrated for you Nikki. Don’t give up though. It’s been proven your symptoms aren’t in your head - you’ve done the psych tests. You need to persevere - hard though it is. Maybe this GP is having a bad day (im giving benefit of the doubt if they’ve been good with you before). Try again perhaps in a few weeks. Are there any other GP’s you could see.

Lots and lots of hugs

Reemz

X

oh Nikki ((((big hugs)))), keep trying tho, but as Reemz says maybe in a few weeks, you’ve always got us on your side :slight_smile:

x

Hi Nikki!

Don’t give up! (hugs)

I have had my diagnosis for several years as you know and i still have trouble getting my gp to believe me about my symptoms. He thinks they are all in my head!

I wish all gp’s with a patient with ms were educated about it as it’s so frustrating for us and can be so upsetting when you are not believed. You even start to question yourself sometimes.

Deep down you know there is something wrong - you know your own body. You will get there in the end.

We are all here to support you and WE believe you.

Best wishes

Teresa.x

Thanks. I’ve taken this all really badly. She also casually dropped into conversation that my notes said I don’t have fits. Well I’m sorry but no one told me or my brain that (or the eeg machine come to think of it!!)

I had some serious mental health issues a few years ago as an extreme and rare reaction to a medication and I can’t help thinking this is being held against me.

I feel that this is the end of the road for me, I put crap into my body everyday to stop the fits the gp now says I dont have. Whats the point really.

So there you have it. No further help just go away.

Hi Nikki

I am really sorry this is happening to you. GPs seem to be a bit of an enigma to me as I have had great GPs and absolutely rubbish ones over the years.

I think you should maybe firstly contact the eppy nurse to clarify what your GP is saying. And ask him/her the questions re. medications. Surely you would be able to have a kind of telephone consultation?

It is the most horrible feeling to not be believed. I know as when I went to my previous GP with my right arm jerking uncontrollably and I was struggling hard to hold my arm by my side, he wrote on my notes - and on the referral to the neuro - ‘symptoms of a tremor’!. Luckily I was referred to a MS specialist because I had severe ON in both eyes at the time too. I had never had any eye problems and certainly no jerking arm problems in my life before (I am 48) so I was so scared what was happening to me, and then had to contend with a stupid doctor! I changed my GP and now this new one is absolutely brilliant - she is the one who re-referred me to a MS specialist!

I know you have changed your GP Nikki, and thought this one was proving to be great, and now this! I really do feel for you. Maybe your GP was just having an off day?

I think, unfortunately, that in this day and age, it really is a case of ‘he who shouts the loudest’. I think I would go back to the GP and make him/her clarify their position re your meds. Perhaps telephone the surgery/practice beforehand and make sure they get the report - it can be faxed over in just a minute!

Nikki. Please keep your chin up and I know its difficult when you are just worrying about what is going on with your body, but try to look at the positives in your life as all this can really get you down and depressed. Please PM me any time Nikki.

Thinking of you

Paulaxx

Hmm - if you don’t have fits then why do you have an eppy neuro??? and why did he/she prescribe anti-epilepsy drugs??? Did the GP not consider these rather obvious facts?!

If I were you, I would be asking this GP precisely why she has changed her tune and if I didn’t get a proper answer, I would be requesting a full copy of my medical records. This is not something to do lightheartedly because there are always errors and sometimes jaw-droppingly awful things in them, but until you see what’s in there, you can’t properly address what’s causing GPs to not take you seriously.

I would also be calling my neuro’s secretary and asking if they have received a letter from my GP. Because I’m wondering if it’s the neuro who is a “wait and see” sort of person or it’s actually the GP?! (In other words, did she really send a letter? A copy would be in your medical file, if she did.)

Don’t let them get away with it - time to get assertive!

Karen x

Thanks Paula and Karen. Well I left a message on my eppy nurses answerphone yesterday and she hasnt rung back yet. I spoke to my neurologists secretary who told me to just contact my nurse. She did say though that there was no record of a letter from my GP.

I phoned my gp surgery and was told to ring tomorrow morning when she is doing the emergency clinic and she MAY speak to me.

I did change my GP but its within the same practice and only because my previous one left.

I asked about seeing my medical records and was told I had to put it in writing and I would have to look at them with the same GP but she would decide what I was allowed to see.

I am so close to just telling everyone to forget it. I will stop my aed’s since I don’t need them and just deal with things myself.

Hi Nikki

Okay this really doesn’t sound right. I would do as Karen said- get copies of all your medical notes as evidence so that you can decipher what’s happening.

It’s amazing what gets overlooked or written wrongly.

My mother was told for many years her dizzyness was down to arthritis and then she moves and recently saw her new gp because she was having a problem wtih her hand and said is it the arthritis and he said what arthritis you don’t have arthritis. It transpires she doesn’t and the original dr got it wrong - they didn’t do a blood test. All her problems dizzyness, leg cramps and the pain are possibly realted to severe vit B12 deficiency for which she has just been put on liftetime injections.

Crazy hey that for almost 20 years she thought she had arthritis.

Take a look at the notes and see whether you can find out why the GP is saying you don’t have epilipsy. If the evidence is there show him. Its wrong you have to go to such lengths but your healths at stake and you certainly aren’t imagining the fits.

Good luck Nikki. Let us know how you get on. But its definitely time for some action it sounds like.

Reemz

X

Nikki, Sadly I think MS is reverting back to the “in your head” illness of old!! Too many nurses and doctors dismiss you and inevitably your left high and dry with no real help or answers, like everyone says on here, you just have to push harder, don’t be afraid to tell them that they are wrong!! I’ve been told its MS, ME, possible Parkinson’s, back to ME then your depressed then back to MS, despite scans etc, I’m never 100% confident in what they say, or even sure that they are sure. Chin up kidder, keep fighting, only you know you xx Pen

I actually agree about docs getting it wrong or not putting things in the notes , i moved house a couple of years ago when i registered with new gp , a few things wernt put down properly by last doctor . so keep pushing , you know yourself as we all do . Good Luck xx

She would decide what you could see???

Nope. That’s not the way it works!

If you make a formal request for a copy of everything in your medical records, I’m pretty sure that they are not allowed to refuse. They literally photocopy everything and give you it. The maximum they can charge you is £50.

Here’s an extract from the NHS rules (http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_113206.pdf):

"Introduction

  1. Individuals have a right to apply for access to health information held about them and, in some cases, information held about other people. NHS organisations should ensure they have adequate procedures in place to enable patients to exercise this right.
  2. The following guidance assists NHS organisations in England, through the process of dealing with an access request in accordance with the relevant legislation and any subsequent considerations. This supersedes previous guidance issued by the Department of Health in July 2002 and June 2003 titled ‘Access to Health Records’.
  3. The main legislative measures that give rights of access to health records include:
    • The Data Protection Act 1998 - rights for living individuals to access their own records. The right can also be exercised by an authorised representative on the individual’s behalf.
    • The Access to Health Records Act 1990 - rights of access to deceased patient health records by specified persons.
    • The Medical Reports Act 1988 - right for individuals to have access to reports, relating to themselves, provided by medical practitioners for employment or insurance purposes."

I found a link to this from here (a very useful site): http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/what_to_do.aspx

Don’t let the b****** get you down!

Karen x

Thank you all x Karen as always your wonderful and your last line made me smile. Thank you so much for the info. So I should be able to just get a paper copy without going in. I’m really not keen on sitting looking at it with a doctor looking over my shoulder. No one rang me back today and I’m starting to feel like if they are all working against me.

Hi Nikki

I think I posted just after you so only just read everything thats happened. Poor you. As Karen said don’t give up. They won’t like what you’re doing but it is your legal right to be able to look at your hospital records and have copies of everything. It’s something I’m planning on getting from my first neuro opinion just so that I can keep a track of everything.

And certainly there should not be someone sat over your shoulder whilst you look at them. I know at my work you write to the medical records team and there is a charge (as Karen said I think it’s under £50) and everything is copied and I mean everything.

Let us know how you get on Nikki.

Reemz

X

Hi Nikki, I think underdtand how you feel, the neuro appt I had recently didnt go very well, I think the neuro missed s lot of things that are cns related and concentrated on the peripheral nerves (I got dx diabetes)despite the clonus and spasticity in my back and lots of other things which are ms symptoms. I also had an mri which will probably not show anything cus of no contrast. Like you I feel let down as the neuro didnt believe or dismissed the history I told him -thats the part that I dont like. What to do ? I’m not sure I could do with some advice. Frank.

Hi Nikki, what a mess! Like you, I have also been pushed from pillar to post by those who are paid to help us.

What else can we do? They are our only choice. Even if we pay privately, we could end up seeing the same doc on the NHS.as happened in my case. he held his head in his hands and said he didn`t know what to say to me, after tests came back normal.

Yet here I am 14 yrs later and still not much wiser!!!

Don`t stop taking your eppy meds, as something awful could happen to you.

going up against the NHS hasnt done me any favours. I expressed my discontentment and a referral was refused. Then I was put thru a painful procedure and I cant help feeling it was done to hurt me, in the hope that I would go quietly away…well I won`t!!!

Don`t you either!

It all makes me want to spit! It really chuffin` does!

luv POllx

Hi Nikki,

So sorry you are having to cope with this.

The LAW states that you can have full access to your medical records from the date the Act was passed - I think that was in 1992 but it was def sometime in the nineties. Notes that were made prior to the Act can be with held if your GP considers this advisable…but he or she has absolutely no control over what you see of the notes written after the Act. She has no right to with hold anything, it is your RIGHT to see them. If you have any problems contact your local PALS service and they will sort it out for you.

You might also advise the GP of the law and suggest she contacts her medical defence society for advice. That should sort things very quickly.

Well I spoke to my GP and she gave me a massive apology. She said she didnt mean to come across as not believing me and was still on my side. She said there isnt much she can do until the report from the neuro psych but my appointment was 6 weeks ago and it still hasnt been done.

I asked about her saying that I didnt have fits and she rekoned she didnt remember saying it but I know she did. I also asked about the letter she said she had written to the neuro about pain relief and she was very vague and said it would be best to wait for this report even though she told me twice she had done it.

My eppy nurse also called and she was not impressed. She is ringing the GP and also chasing up the report, I know she is always on my side.

Thanks for all the support.

xxx

If you are going to put in a request for medical records then make sure you keep a copy of the requests you send out, make sure you use a signed for service. The GPs surgery should be able to provide copies fairly quickly the hospital records can take a bit of time to come through. Do not be surprised if you don’t receive copies of all your records, I’ve had to pay my previous practice £150 just to get information they were not providing me with they even promised everything is there and nothing has been withheld when I requested them for the third time. I didn’t believe them took records and moved on and about 1 week ago I put in a request for all my medical records from the surgery I’m registered at explicitly requesting all my old information from previous surgery. I got my records and had a quick browse and I wasn’t surprised the previous surgery had not provided me with my full records. I hope your surgery follows the procedure and provides you will all your records and you don’t have to pay four times. The hospital records took time countless information is missing but I’m not really bothered because they did not charge me for the copies no idea why.