I thought that this opinion piece/letters in the Guardian today would make interesting, although not exactly comforting reading for all of us who have encountered false labelling, particularly in terms of being given a mental health/stress diagnosis by doctors too lazy or incapable to listen properly and join up the dots.
theguardian.com/society/202...
I hope the link works.🤞 Wishing you all the best health and the best doctors possible 🍀
Hello Hoofprints
I hope you don't mind me responding to your post. I have been trying to find the courage to reach out and ask for guidance. I read your post and burst into tears. I was diagnosis with bipolar, years ago due to the fact I have had so many still births and miscarriages and many failed attempts of ivf and was put on meds.
In January last year i became physically unwell again but i couldn't seem to get rid of it this time. I had so many infections and started to get swelling in my neck and shoulders, behind and in front of my ears, problems with my mouth, my joints, I feel like there on fire. I have a rash on my face and body, dry eyes, a fever, shortness of breath. I had a routine health check and was told I have an irregular heartbeat due to meds and to stop taking them. They wanted to put me on different meds, but I said no as I was still so physically unwell. The GPs would not help me they all just said get back on meds. I had one GP appointment where the next patient walked in. Eventually, in December one GP said she thought it might be lupus had bloods done and a chest X-ray. The practice nurse called me in for a peek flow test, she told me you have copd, but there is nothing wrong with you get back on meds, your physical health problems will go away at that point the lupus test had not been confirmed and I felt broken. A week later, I got another phone call from a different nurse saying I tested positive for lupus come back for retesting in 3 months. I have tried to talk to a GP asking what exactly I have tested positive for they will not even speak to me I don't even get a phone call back. I do not know what to do. Should I just change my GP? Am I entitled to know what I have tested positive for? I wondered if you could offer any guidance and thank you for the above link.
Download the nhs app, then look up your results on there. It has every document ever written about you on it.
hi lulamay: is this the nhs app you are referring to?
Yes, there's a section called see your gp record
Thanks…but this is So frustrating:
Just downloaded the app…had a feeling using this could be complicated for me: I’m in tertiary care with 3 clinics at a university hospital outside our local nhs catchment area. Am also in care with 2 local hospitals. This app is only letting me see my appts at one of those local hospitals + none of my upcoming appts at the other local + at my university Hosp. Also my gp surgery only puts my meds & appts on this app. So the app advises I go ask my gp surgery to include more of everything to do with the 3 hospitals at which I’m in long term care…
Luckily, 2 of my hospitals have patients portals (my university Hosp & 1 local Hosp) so I do get hold of all m6 reports etc on those portals
Hi Barnclown,
See my reply to Flynn67 regarding another app used by GP surgeries to obtain your medical history information; These apps are in addition to the NHS app.
I did reply on the conversation between yourself, Lulamay7 & Flynn67 but I think my post has appeared towards the end of the entire thread! Lol……
thanks yes: great reply! I’m very lucky because for 20 years have never had any trouble getting hold of my medical records from primary, secondary or tertiary care…they all give whatever I want. Sheer luck. But the thought that this nhs app could centralise everything from all my hospitals & gp surgeries was v intriguing….&, as so often happens with tech, A1 etc, the reality is a bit more complicated 😉…eg my GP surgery uses askmygp + Systemonline, but it doesn’t fill in all the topics & fields these offer, so I get reception to give me anything that’s not on them. I suspect they are all so open with me cause for 40 years they got my version of immune dysfunction so dreadfully wrong resulting in permanent multisystem damage so they are kinda extra helpful now 🤷🏼♀️
Hi Lulamay7,
See my reply to Flynn67 regarding another app/on-line service used by many GP surgeries which enables patients to read information about themselves. These apps are in addition to the NHS App.
Hope you can find my reply to Flynn67 as it appears to have moved to the end of the thread! 🙂
I am so sorry that you have, and still are, suffering so much. I'm so glad you have posted here because there are a lot of knowledgeable and caring folk who can steer you and support you. I'm sure more people will pop up here soon and be able to give you advice. Please also consider reaching out to those working at Lupus UK if you haven't already because they will be able to give you expert advice and support.Yes, I would change my G.P. ultimately, but it sounds to me as if you need to have an urgent referral to a good rheumatologist.
Has your surgery done this yet? Where's the logic in making you wait 3 months to retest your blood when you are already positive?!!! There's none. Some cases of autoimmune disease don't always show up in the blood, or at least not consistently, but the disease is still there. You are highly symptomatic and fit the clinical picture of lupus or similar autoimmune disorder. You need help now.
I would push hard for a referral to a rheumatologist now while looking for another G.P. I don't know which area of the country you are in but maybe you could ask locally about better GP.s , and post separately on this forum for a rheumatology recommendation saying where you live in the country.
I know you are on your knees right now and it's hard to be assertive when we are so physically and mentally low. But you must push on and fight for decent treatment. I found it helpful to:
(a) list on one side of A4 paper my main symptoms and hand this to the doctor. You could also email this in advance of a GP appointment. They can't ignore or wriggle away from what's written down and sent to them;
(b) take someone with you for support if you have such a person. I took my partner who was mainly there to listen but was also able to prompt me when I needed it and to fill in gaps and bear witness to my symptoms (and the fact that I had tried physio on numerous occasions to no avail!!)
I would also email and phone my G.P. surgery to ask for a copy of my blood test results a.s.a.p. You are entitled to have a copy free of charge. It's appalling they are holding back information. At some point I would apply for all my medical records and I would consider doing this via a solicitor, who can state on the letter of application that no legal action is contemplated against the G.P. practice/hospital.
The reason I suggest going via a solicitor is that if you apply in person, sometimes doctors can withhold records from a patient on the basis that it may cause them harm to see certain parts of their records. As you have been diagnosed with bipolar disorder, they may do this in your case. If a legal representative applies however, they must make a full disclosure of your records. You don't need all your records now, but it's something to put on the backburner and to just be aware of. I would focus on getting my blood results for the time being so as not to get overwhelmed.
You mention problems with lung function and heart irregularities. I don't know what medications you take, but I understand that these symptoms can also be symptoms of lupus itself. Therefore the illness needs prompt attention and investigation as it's ostensibly affecting major organs. If you get nowhere fast with a G.P. then maybe it is worth attending A & E with support from someone and get these symptoms urgently evaluated.
The practice nurse sounds grossly misinformed and unduly dismissive to say there is nothing wrong with you. Autoimmune disorders, including lupus, can affect the heart and lungs, and if I'm correct in my understanding, can affect the way the blood clots in some patients.
Some patients are known to also suffer from antiphospholipid syndrome, which is detectable on a blood test. As well as being more prone to forming blood clots with that syndrome ( which if left untreated have the potential to become life threatening) I think it can also cause problems with bringing a pregnancy to full term.
Can I also tell you how very sorry I am for your loss. The grief experienced in losing a child even at a very early stage in pregnancy is immeasurable and beyond compare. It's the most visceral bereavement one can undergo, literally a part of oneself gone and a whole imagined life going forwards vanished. You have suffered this multiple times and anyone would feel devastated with grief and would be expected to suffer some degree of depression afterwards. Our hormones alone can cause this quite aside from the reactive grief itself.
And hormones do seem to play a huge part in autoimmune disease. So, sit back and be kind to yourself for a moment because you have been through an awful lot - and had to deal with a fair few idiots along the way!!!! There's still a good life to be led with or without autoimmune disease, with or without children, once you have the right support and treatment in place.
Sorry this is such a long reply. I hope others with even more experience than me will be along soon. Please do a separate post for a recommendation for a rheumatologists and get in touch with Lupus UK. And don't give up because you are not alone even when it feels that way 🤗
Hi
This has probably been answered below but I missed it. First, sorry u have had such a stressful time dealing with getting a diagnosis. Sounds like real nightmade and one I can in some respects relate to.
1. Access to records
(a) u have a legal right under data protection law to all your medical records, unless one of the limited legal exemptions apply (which I cant see how they could in the case of you requesting your lupus relatedblood results).
(b) They have a legal requirement in most cases to provide the data as soon as posisble and at the latest within one month of your request. Unless, that is, there is some legally relevant and valid reason why they need more time, such as the request is particularly complex etc. This would not seem to apply in teh case of you requesting medical records. These could be probably have been provided the same day you requested them.
(c) Its worth noting that you dont need to say you are making a Data Protection Act subject act request (SAR) for u have to have made one. You asking the nurse for your test results should have constituted such a request. To be on safeside, I would put request in writing and email if posisble and make clear in email what you are asking for and note that u already made the request on whatever date u asked the nurse .
(d) As the GP appears to have already implicitly refused to provide the results (and so is posisbly in breach of data protection law), you would be entitled to make a complaint now to teh GP practice and give them say a week to rectify their non-compliance with the law. e.g.
"Dear GP practice
Data Protection Act Complaint
I requested my test results on [date] when I spoke to [nurse name] but have during subsequent communinations with [name of GP] been unable to get agreement to provide these. I believe that the GP practice is now in breach of the Data Protection Act and am requesting that to resolve this the GP parctice provides my tests results within the next 7 days. In the event this is not possible, I will apply to the Office of the Information Commissioner for a determination as to whether the practice has breached its DPA legal duties.
best wishes
(b) the diagnosis
If they have said that you tested positive for lupus, the I think they have a clear duty of care to refer you without any further delay to an appropriate rheumatologist to confirm/or not the diagnosis and start treatment if indcated. This is partic case in that u have indicated a range of impactful symptoms.
One final thing, am so sorry to hear about miscarriages and still births. These can I think be associated with lupus but are most strongly associated with anti-phospholipid syndrome (another systemic autoimmune condition). I would ask that they test for this - including tests for the principle APS auto-antibodies which (off top of my head are) a re anti-cardiolipin, lupus ant-coagulant, and anti-beta 2 something).
best wishes
R
Hi Roberton
Thank you, I am so blown away with the support and kindness i have received here. Not once have I had any kind of help or support from any gp or nurse.
Thank you for taking the time to write that down for me. I have taken a photo so I can create an email and request my results.
My mum wants me to make a complaint, but I am so frightened to do so because the way they already deal with me is awful, and I didn't want to make it worse.
Please know how truly grateful I am.
Hi
I completely understand being reluctant to complain. In theory, of course, a complaint should lead to improvement in how they treat a patient but I know thats not always the case.
I tend to be a bit combative (as in my sample letter!) and sometimes it works and sometimes it doesnt and the more gentle approach can often be much more effective. Especially to begin with.
Anyways. hope u get things sorted out and things get a bit easier for u soon.
bw
.
Hi Roberbob
I now have more of a clear direction to move forward with, which I never had this morning. I also now feel more able to deal with the gp surgery and request results and answers to my questions, thanks to the guidance given here today.
Please except, my deepest thanks for your guidance it is very much appreciated.
Hi Flynn67,
A lot of GP surgeries now have an online website/app which you can use to see test results, including a full breakdown of blood tests with exact readings and ranges. You can order medication online, make appointments, see past & future appointments, read letters and your Patient Summary. They are very straightforward to use, contain lots of information with links for further reading plus the one my surgery uses, enables interaction between them and the patient if you wish to query something written about you or want clarification.
Examples are, ‘System on Line’ and ‘Patient Access.’
Different surgeries use different apps, to be clear these are NOT the NHS app which is something entirely different.
You can download the NHS app yourself without asking ‘permission’ as it were from anyone, but to obtain the surgery ones, you have to register to do so via the surgery.
It’s worth asking asking if your surgery has one of these apps yet as if they do, you may find it very useful.
All the best to you 🙂
Hi Turquoise-1
Thank you so much for your message, I'm sorry I didn't see it sooner. I have tried with the app but have limited access. I am going to contact the surgery, and j have decided to find a new gp.
If you have tested positive for lupus your GP should be referring you to rheumatology, not sitting on it for three months while it gets worse.
If your GP is not responding then it is time to get some help in making a complaint to your practice manager. Make it simple - tell them you have tested positive for lupus and have many symptoms and your GP is refusing to refer you or even discuss the test result with you.
It's a bit weird, if they don't like dealing with you then you would think they would be thrilled to pass you on to a consultant.
Hi JenniferW
That is so true you would think they would just pass me on, but no. So I have taken on board all the advice given here, which has honestly given me strength. I have contacted Healthwatch and sent an email to the surgery.
You know everyone here has offered me so much kindness and support. I am so grateful more than I can ever express thank you.
Well done for being so proactive 👍👍👍
Hi Hoofprints
Thank you so much 😊 mum and I are also going to see her solicitor at the end of the week just for a chat.
Healthwatch are going to support me. I sent the email that Roberbob helped me with. I have also found a new gp surgery, and they are more than happy to take me on, once I have all the results, they will know what to do.
I also spoke with Lupus UK support on the phone, they were brilliant. I looked up all the information on Lupus, but especially the lupus anticoagulant, and it rang so many bells. I now feel informed and have more understanding.
I went from feeling absolutely lost within this whole process to gaining back my strength to move forward, and that would not have been possible without your guidance 🙏
You all are truly amazing thank you 💕
You are truly amazing - well done for getting so much done in such a short space of time. Good luck with it all, and well done to your mum for being there with you. Keep us posted and good luck 🍀
I can not thank you enough for your message and kindness, Hoofprints.
I was guided here by my peer support officer from Bipolar UK. Your response has given me information, support and hope, which I am deeply grateful for🙏 another kind person mentioned the NHS app which I have now and the gp surgery has restricted my access to my records which I think is due to my Bipolar as you said.
I have not been on meds for the last year with no problems other than physical. A new psychiatrist I saw 3 weeks ago said my bipolar is in remission he feels I've been misdiagnosed, and i am dealing with ptsd he has told the gp this. I have the details of someone from Lupus UK support line. Everything I have found out about lupus and autoimmune illness has been through Lupus UK.
I have my mum and she is coming with me when I am to be retested and I am going to find a new gp but will ask for a referral before hand.
I have taken on board everything you have mentioned and feel more able to deal with the gp surgery and everything that is happening with me and more able to reach out for support.
Once again thank you so, so much from the bottom of my heart ❤️
I am delighted to have helped in any small way I can. And I'm also delighted to hear that you have not only the support of a decent seemingly open - minded psychiatrist, but also of your mum. That's wonderful.I hope that the app is useful - it too is likely to only show some and not all of your records given the previous bipolar diagnosis, so bear in mind your underlying right to see them all. There are plenty of lovely high street firms of solicitors who would help you either pro-bono or for a small fee to get all of your records.
Good luck and keep us all posted with your progress when you can 🍀🤗
I have spoken with my mum and showed her your message, and she said that there are good people in the world like you and others who have showed kindness to me today.
I am eternally grateful 🙏 I will keep you updated as well and again thank you 🙂
Oh thank you for that - it means a lot.There are good people in this world for sure and without their help I wouldn't be here posting now. You will get to a better place, just the road isn't always easy. Have a lovely hug with that mum of yours and keep going 🤗
I was told I had anxiety by a female GP for years before a bad flare up followed by diagnosis (by a male GP). But the argument is compelling (and I think some female GPs have absorbed this kind of misogyny). But also, of course, SLE can manifest in bodily symptoms of anxiety. What's really lacking is the freedom to do wide spectrum tests, which are unusual in primary care and this has got worse in recent years. Healthcare is rationed, so you are filtered through a flow chart and the easiest and cheapest explanation is the one given.
It's frustrating because had I been diagnosed earlier, I could have done more to prevent it escalating, before the damage took place.
You are so right about the rationing of healthcare - it's almost designed now to miss the diagnosis, to put the emphasis on postulating a plausible diagnosis rather than the scientifically correct one (especially where that saves money). Of course, as well as being an inhumane approach to patient care, it's a false economy. I have been unable to work for decades - a once highly productive and independent woman cut down repeatedly in her prime for want of open minded medical inquiry and lack of money put into research.
So much lost financially, both for me personally, and for the economy due to the tax I no longer pay now that I am unable to earn money. I know there are many others in the same position and if doctors don't get better at both diagnosing and treating these conditions, this burden of ill health will just get passed on to future generations.
Completely agree with you. I lost a lucrative career because I was persistently unwell for a few years without knowing why. Managers simply thought I was underperforming and I'm sure we all know how that went. Nope. Turned out I had Lupus, which would have been subject to disability protections in the workplace. I'd love to rage at my GP or tell my former workplace, look, turns out I had this disease, but somehow my brain can't focus on how much money, my life and my future I've lost as a result. You too, by the sounds of it.
I'm so sorry you have experienced this too. I try not to focus on what I've lost, but it's hard at times as the losses are ongoing.
Although illness is a normal (sad but true) part of life, we don't as societies seem to recognise that.
I wish we could educate all children from primary school upwards about disability in all its forms, not in a way that frightens them with details of symptoms etc., but just explains in ways that would hopefully encourage more inclusion and thoughtfulness. I wish all children could be taught to sign as a basic step towards this. Imagine what they could say about their parents without them ever knowing 🤣
I heard someone describe healthy people as 'pre-disabled', especially given our longer average lifespans and the frailty which encroaches with advanced age. If we had a better awareness that lasting disability and illness could impact any one of us at any moment, and will to some degree inevitably with old age, perhaps those unsympathetic and impatient managers, friends, clinicians, politicians etc. would adopt a more empathetic and progressive approach.
I have to live in hope, especially in this moment when I have only just returned from yet another rheumatology appointment in which steroids and mycophenalate seemed to be on the table from the consultant at the start of the consultation, only to be taken straight off the table again at the end.
There was no logical reason that either myself or my partner could fathom for this. Seemed to concede I have ongoing inflammation on a low level and connective tissue disease, even at one point conceded low level of inflammation in my muscles.
But then I was told that we will be taking 'the natural approach ' because it's not showing up in my blood (conceded this was because I am on hydroxychloroquine). I am to continue hydroxychloroquine only, no new drugs and more physiotherapy, all of which have failed to prevent me continuing to to decline...
I'm speechless and very confused
Hi, Hoofprints.
Thank you for your post, in which you describe similar themes to those in this book:
Unwell Women by Elinor Cleghorn review - The Guardian
The Guardian
theguardian.com/books/2021/...
This review was in the Guardian on June 7th 2021.
It's a big book but I found it simply fascinating and very relatable.
I'm glad that you've found help and support on here and I hope your onward journey is a better experience for you.
Thanks for posting that - I had not heard of that book and will have a look at it 👍
Flynn67 You have been given good advice.
Re early loss of pregnancy, this is highly associated with APS/Antiphospholipid Syndrome/Hughes Syndrome, (different names for one autoimmune syndrome which can occur with or without SLE/Systemic Lupus).
There is no specific blood test for SLE Lupus so they have probably tested for APS.
healthunlocked.com/hughes-s...
Blood tests for APS
1) anticardiolipin,
2) beta-2 glycoprotein I (β2GPI),
3) lupus anticoagulant.
They need to do these tests twice, 12 weeks apart, to exclude false positives.
Re NHS APP and other apps the GP practice can decide how much info you can see, and what functions you can use. But as stated by others you have the right to see your FULL records.
I hope there is something in there that helps you.
Best wishes.
Newbie Here!!... Lupus (SLE) Diagnosis in 2015
New diagnosis of Probable SLE
Change of diagnosis 😲
