I have come here to moan about my GP surgery. I live in Pembrokeshire, Wales.
I am always made to feel that I shouldn't be accessing my blood test results from my doctor's surgery. I have 6 weekly monitoring blood tests for a DMARD I take for my lupus. I take Methotrexate and MMF, daily. I monitor my own levels, with a record at home and take these results to consultant appointments.
My GP surgery always make it such an ordeal.
The receptionist used to print them out and hand them over, there and then, when I asked in person.
Then one day I got told that they weren't allowed to do that any more and that a GP had to sign them to authorise their release.
I was told I needed to give them 48 - 72 hours hours notice for them to be printed and signed off by GP, before collecting from reception.
So I email in advance and ask for them to be printed for me. I call in a few days later to collect.
I have always questioned this - getting harder for me to access my records, rather than easier. I have a chronic condition. I am encouraged to self care. But I cannot access my blood test results without this palaver.
Plus, from contact with other patients and groups I know that many in England can now can access their notes online! I see posts on one patient support group of people saying they are frustrated that they cannot access their blood test results on their app, the day after they've been done. This always fascinates me. This is 2024 after all. In some places in England you can even access your referral to secondary care online and if there is somewhere with a shorter waiting list or a different consultant you would prefer, you can redirect the referral letter yourself! If only this was happening here.
But my GP surgery have now told me that I can still access my blood test results, after authorisation by my GP, but I will be charged £1 per sheet of paper.
I thought that they weren't allowed to charge for access to your medical records, under the Data Protection Act 1998 & GDPR 2018 and so I have contacted my equivalent of the Community Health Council to check this out.
There is a huge problem there and I have already had to contact the practice manager to ask for help sorting a few things out. I've had never ending infections this year (chest, UTI, ear infection, shingles, chest infection, UTI, UTI, UTI, chest infection, UTI, thrush) and have not been referred for any appointments or investigations at secondary care. My ferritin is 26 and I got told that this had nothing to do with anything and I was looking for answers and links that were not there. My private lupus doctor said I should have a brain MRI, last October, due to some serious symptoms, this has been side stepped at every opportunity.
I've had lots of UTIs and should have been referred to Urology for tests etc - even the Incontinence Nurse recommended they refer me, in July this year - ignored. I had an appointment in August, a GP said she'd look into a few things and said she'd do 2 open referrals for me to try to get brain MRI and an appointment re Urology issues and she'd leave them in reception for me (we have private health insurance but they don't always play ball with chronic illness and wont monitor anything)......3 weeks later when I ask where the letters are, they haven't been done and she's leaving the next day.....nothing she'd said she'd do, was done. So I made an appointment and saw someone else and did manage to get a chest x-ray referral - my cough is horrific and my family have been telling me to get it looked at for months, they say it sounds like I'm taking my last breath...
But I now need to get further appointments to go over these many issues and referrals yet again.
They seem to be avoiding NHS referrals but agree if you say private.
It is so hard when you have to fight so hard to get care.
I needed a moan. Sorry.
Wendy x
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Wendy39
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Hi Wendy 39, I live in London where there are different NHS trusts. I cannot access any test results ordered by my surgery. I am able to access all test results ordered by the different departments monitoring my conditions, general respiratory, lupus and general rheumatology, and general gastro the same time as the doctors because they are automatically added to my records to which I have access. The hospital is part of a different NHS trust. Yesterday another hospital sent the outcome of biopsies taken from a recent endoscopy, ordered by my GP, directly to me. If they had not these would just have sat on my GP notes. I can now take this with me to my next general gastro appointment. I cannot understand why GP practices are a law unto themselves and present cobbles and stones on the hard road many of us tread daily. I do hope you get things sorted soon.
Thank you for your response and support. It is infuriating that there is such a variance in trusts and countries!
I cannot even access the hospital results.
I have the NHS Wales App and can order repeat prescriptions. It should, looking at it also allow me to make appointments and see records - but these aren't options right now. I can only do the repeats.
Wendy, Are you registered on the NHS app. Your GP should be loading up all your files like your doctors letters from the hospital, blood test and so on all on the app. There is also excess to order prescription on the app. By registering the app you will need a code from your GP once you are registered. Hope that helps. It is a free excess . You can then download all blood test from the app. That depends how efficient the surgery is in uploading the results and the documents.
Unfortunately this isn't available at my surgery and in fact I don't know anywhere else in Wales where that is possible, unless you have kidney disease / are on dialysis / need a kidney transplant.
I cannot access any results, blood, tests, biopsies, letters or notes at all.
I wish all hospital trusts / GP surgeries offered this service - you would think it would be the minimum for 2024!
Whilst all of us are on the thread .just wondering on a different subject, has anyone had a call from their pharmacist or GP surgery about COVID and flu jab as I had an email and a call from them and got an appointment for it booked end of next week.
it is not much better here nowadays , its nhs on whole. I came straight out gp consult after telling her my referral they'd made only gave me local hospital as option for booking and I didnt want to go there. she said you have patient choice go see reception and tell them you want form changed to open your choices and book elsewhere , I went to receptionist and she said no its not that easy you cant just choose and if you do you likely will be turned down 😡 its crazy times. when you get the referrals the specialists are not available either, my daughter has still not been seen by neuro ophthalmologist , I have a year to wait and all the referrals saying you will see the consultant ....or someone else, its always someone else I dont think either of us have seen the actual specialist consultant ever we've been referred to but their reporting colleagues. the stress of constant chasing, fighting is so detrimental I feel hassle after hassle but admire your fight be it you shouldn't have to 🙏
Patients in England do have the right to chose and if you request a second opinion, you should be granted it and have the option to chose where that second opinion comes from. GPs shouldn't be blocking this right.
We don't have the right to a second opinion in Wales and no right to chose where we get our secondary care from.
It's a complete postcode lottery! Which makes me angry when living with a chronic conditions as serious as lupus.
Sending you and your daughter my best wishes and hope you get what you need.
Not all GP surgeries use ‘System-on-line,’ some use other online portals, eg ‘Patient Access,’ or others. I’m in England, & even in my hometown, GP practices use different online portals, (I know this from experience).
My current GP surgery has used ‘System-on-line’ for many years, but over the last few weeks they’ve ceased doing so & are encouraging patients to use the NHS App instead.
I feel for you Wendy and Wales. I've had my DMARDS bloods done today. I will get a message at 4.02am telling me my results are able to view on the NHS app via the UKKA. They will also be on my records on patient access by dinnertime once my gp has seen them. I know I'm lucky and it's beyond me why you arnt entitled to the same access. Think of the hassle the 👽 from another planet would be spared if you were. Xx
It's absolutely ridiculous the variation across the UK! Everyone should have access this way, in 2024. In the long run, it would save time at GP surgeries and hospitals and allow patients to be really proactive in managing their chronic conditions. I am all for empowering and self education. But old school doctors and managers are clearly not.
OMG Wendy I thought my surgery were bad. Mine do not do my bloods for monitoring let alone give me a copy . I have had the promise of referrals then find they haven’t been done and when I confronted the GP she denied that she had agreed to and put the phone down on me but your surgery seem to be actively encouraging a two tier system NHS via private healthcare. Just because you have private healthcare does not mean you are not entitled to NHS care.
Have you contacted the Practice Manager direct? I tried repeatedly for weeks to speak to the Practice Manager of my surgery. Was told she wasn’t there, was busy, they would not give me a number or email. I eventually found it on a patient participation notice and emailed her. She rang me the next day. I told her how badly I had been treated at the practice and she agreed to a named GP, double appointments which was all I wanted. Had she not I would have approached the Health Board. Worth a try lovely.
I am so very sorry that you are feeling so ill and being treated so badly. I sincerely hope that you can get something sorted Wendy.
On a positive note, we in `wales can now be referred out of country for conditions that require specialist care. Xxx
We have had that option for decades , it just wasn't being used for various financial reasons.North Wales had a relationship with Chester. It fell apart because the costs for appointments and procedures cost marginally more at a Chester hospital than the Welsh one.
The Chester hospitals said they couldn't subsidise the difference anymore and could only accept patients if the full cost was paid. The Welsh Trust refused to pay the extra amount and said they'd only pay as much as they will fund in Wales so Chester had to stop taking the patients.
We have always had the Welsh Referrals Scheme for patients to apply to access to Specialist centres across border or the treatments when unacceptable delays were occurring and affecting the patients condition.
It's virtually impossible to get contact information from the system as a patient so that you can chase up an application, I've not managed it yet after hours over months wasted trying.
When you do receive an answer it's usually a rejection for funding using the usual excuse that they have specialists , say for example in Rheumatology, and that they treat , for example , Lupus , therefore they are providing quality services for patients and they should be seen locally.
The fact that the local Rheumatology may not have any up to date knowledge on the illness you need a specialist for or experience of treating seems to be of little importance to them.
I got to go to Centre of Excellence in England when I was being assessed for Behcets. Only because of the help I got from the Behcets forum and society to know that this was centrally funded so free to all UK patients. That was the only reason my Consultant and GP sorted it out.
When the CoE found I had Dysautonomia symptoms they weren't experienced in testing and treating it. They were really sorry because they said that if I was from England they could have referred me to the Dysautonomia Clinic straight from there , but because I was in Wales they could only recommend that my Welsh GP and Trust funded it.
This should have been available through the Welsh Scheme but my local doctors refused and then I was stuck with a fight , that was four years ago I've still not been , I'm just lucky that my Cardiologist works with me and realises he needs help to treat me because trying to fight to get to the Unit was too much for me.
I am currently under Walton Neurology for Migraines and Cluster headaches. This only happened because I'd had some tests there with the Behcets Clinic and a local Consultant also works there. They had already stated that they would not be able to do much more in Wales so he organised the cross border referral the previous contact meant it was approved. Since then Walton organised for me to get a Vagus Stimulation Device.
It's apparently meant to be approved in Wales but not rolled out everywhere so you can get it easily in South Wales but must apply to fund it elsewhere . This funding should apparently be automatic.
My GP and Consultant put the paperwork in within a month of the three month free trial to make sure funding was in place. In the end Walton kindly decided to fund it while I'm on their books because there was no word on my approval. It's been over a year of chasing up this allegedly simple funding by my doctors and I've still not received funding from Wales.
This is the reality of the cross border system in Wales . All the Welsh Secretary has suggested is the old system that has been tried ( but not with any enthusiasm) and is failing.
There's no point in having a system in place if local Trusts and Health Boards refuse to apply and fund the referral and actively deter doctors from applying because of the costs.
Unless all Specialist Centres for less common conditions are made into centrally funded , free access to all units like the Behcets Clinics , there is not a hope in hell that a patient from Wales, NI or Scotland will be actively referred to use it.
For a start many of these Specialist Clinics require you to be referred by a Consultant, not just a GP, so you have to manage to get a Consultants appointment first.
And then you need to convince that Consultant that you require a referral, how many are willing to admit that they need the help to assess someone.
Despite requests from four other Consultants and my GPs for an urgent Rheumatology appointment I still haven't had one since 2019 and I was apparently meant to be left on their books.
They won't take requests for referrals for conditions like Fibromyalgia or EDS in North Wales.
75% of the Senior Rheumatology positions are empty across the North Wales hospitals so it's not a surprise.
So you still have the delay occurring before you are able to apply.
Devolution has not done much for the regions health services at all.
Although if you are in England, you can get access to free spaces or special clinics in other Counties or cross border more easily as long as your doctors apply for it.
Having Labour in charge won't change that because they are already in charge of the second class system in Wales.
We might have free prescriptions and free parking, sounds great to people whom don't have to rely on health care all the time , but that comes at a heavy price.
The only thing the new policy seems to be encouraging is less care in England , at least in Dentistry,
Let's face it the only reason Wales brought in 12 months check ups instead of 6 months ones is because we've had a dental crisis and severe lack of dentists for nearly twenty years. It was meant to free up appointments on dentists books so that they would open up their books again to new patients reducing the amount of us whom cannot get an NHS dentist in Wales. They made the changes but did not open up the books so nothing really changed. England are only just experiencing what became normal for us.
Government changes don't change the health care system no matter how big their promises are. Extra money doesn't make a big difference either. It's a change in mindset and management that can only do that.
Sorry it sounds so gloomy , but it is, take care , Bee x
Dear Bee thank you for taking the time to post this. You have pointed out all that I have been told and experienced. I am not well enough to write it all down in such a concise and detailed manner. But you have summed it wonderfully. Take care and I wish you all the best going forward. xx
It is gloomy. In 2011 I was able to be referred very easily to the Lupus Unit in St Thomas`s from South Wales, however the diagnosis was worth nothing because they discharged me to the care of my Rheumatologist who refused to accept their diagnosis. He told me “ I know you want to have Lupus but you have not got it” .I discharged myself from his care and refused a referral somewhere else as I had completely lost faith in the system.
Two years later my GP was struggling to help me and I became really poorly so I had to accept an urgent referral locally. I have had, like many others, extremely poor and often negligent “care”. I thought it could not get any worse but lately it has been so bad I feel broken.
It has obviously touched a nerve that I mentioned the availability of an option of being transferred out of country now but I was just passing on what I had been told in the hope that it helped someone else here.
Our system in Wales is broken yet some disciplines provide excellent care. Rheumatology and Pain Control are sadly lacking.
Looks like you've been through the same sorts of situations as me.I often wonder why they waste the money to refer you elsewhere if the doctors refuse to take the recommendations or even abide by the diagnosis of an expert in that field when you return.
It's that level of arrogance that infuriates me. That they won't accept anyone's opinion but their own and often snub their nose to a diagnosis done elsewhere not because it wasn't potentially right but because they seem to take getting expert support as a professional slur. It's those sorts of Consultants and GPs that usually have outdated ideas and need the guidance.
A good Consultant is more than happy for professional support and to work with and listen to their patients ideas , as they realise when it comes to a less common condition the poor patient whose had it for years in search for solutions has probably done more research than they have . Finding those is like finding hens teeth.
After going to the Behcets and other clinics I have literally had to contact them after receiving any letter with advice on medications or treatments to ask if they could write again and firmly request the medication was prescribed because my doctors always used to think they could pick and choose if they took the advice and usually made the decision based on cost.
I obviously wasn't ranting at you , I wish the announcement had given me hope but it was that , that hit a raw nerve for me. The idea that they acted like when they were offering something special and new when it was just a faulty idea in new packaging.
I think they've only managed not to get too much comeback on it because most people in Wales never got to know that the system was available to them before. That's how cunning they were with it to make sure patients didn't come in and demand what they were entitled to.
I just wish we didn't all have to use up what little energy with got chasing after our doctors to get stuff done and waiting around for calls that never occur. I always say , " There is nothing that makes you feel more sick than trying to get well" , these days I don't think a truer word has been spoken.
Thanks Bee. Your post caught nevat a bad time as the Rheumatology Nurse had just rung and ranted and patronised ne for not having my pre DMARDS bloods done. Excuse me for having a blocked bowel, a UTI, ecoli in my bladder because of my bowel, severe leg pain for 7 months and now thrush from the antibiotics. She interrupted. Lectured and finally in the middle of me trying to explain something said got to go a patient needs assistance and the line went dead.🤬
I was told I could not have more steroids let alone DMARDS then two days after received two prescriptions and blood stickers in the post. One for steroids, the other for DMRDS l No explanation nothing. I arranged for the blood tests but was at A&E at the time. Since then I have had so many appointments, no sleep, and been rolling around with gut pain. I could have just taken them but I was wanting to speak to my GP who has been off fine month. It was negligent to just sent prescriptions without the preliminary discussions. It is just a disgrace really yet the blame is mine? X
I collected my notes and paid the £1 and made them produce a receipt.
I have got Llais onto it, who have involved the Hywel Dda UHB.
I am really needing help from GPs right now, a few worrying issues and not getting the support and help I feel I need. But what is new hey?
I have contacted the practice manager and set out all my issues over the last 12 months and she has said that it's not up to her to sort 1/2 of them....I've asked her if it's not her, who is it??? I have made it clear I am not making a complaint, just genuinely need help sorting through issues that are worrying me. I need a referral for a brain MRI, urology and have my cough investigated, as I meet a few of the criteria for lung cancer referral.
I have now also contacted my lupus expert, re my cough.
Fingers crossed I get some help.
As always, fighting for what should happen without a battle and feeling for those who cannot fight for themselves for many reasons.
I am so very sorry that you are having these issues. Sadly I can identify I continue to receive appalling, negligent and unprofessional care. This year has been one of the worst of my life and I have been passed back and forth like a ping pong ball. I am it seems no-one`s problem. I got my GP sorted then She went on annual leave for a month so I have been pushed from GP to 111 to A&E, to Rheumatology and back again on repeat.It sucks. I feel as low as I have ever been and sadly I have no hope that my life will improve .
The Rheumatology Nurses have been insulting, patronising and confrontational. Apparently someone my size can expect keg pain, shouldn’t eat carbs and make their job as clinicians difficult. Currently I have no fight left in me.
I totally concur that if it isn’t a practice nabagers job to sort things out then whose job is it? I suspect the Health Board would not agree with her. Why is no one in the Welsh NHS taking responsibility either for their negligence or their lack of care? I have never known things to be this bad.
Like always when we feel at our worst we least likely feel like fighting. It is truly abysmal that yet again you have to seek the help of a private Rheumatologist to get basic care . I honestly feel that you should make a formal complaint if you are strong enough to do so lovely.
I read an interview with Jeremy Miles where he appeared to be very much back tracking from the stance that people in Wales can be referred out of Country. What a total disgrace that is. They have only just stated that we were now allowed to do so. Such a shambles and it generates mistrust and uncertainty for so many.
nhs seem to be collapsing I agree nor referrals, referrals being turned down and it is so hard to fight all the time. referrals seem to be one test at a time too, one test wait for results another test wait again, nothing seems joint up or happening. its unaffordable to be ill, prescriptions, every thing for self care, decent diet, keeping warm or cool, i could go on now pay £1 sheet , its madness . do you ever feel like you're in the way and not wanted 😡
My feeling is NHS pathways can be limited. Some conditions covered comprehensively, others not touched.
Testing can be outdated, not always reliable ( room temperature may affect some tests, and whose blood is used as normal etc) and not thorough enough so people get missed (eg reliance on ESR to look for inflamation).
Text books and criteria not being reviewed.
Where is the force for good, to update everything?
Yes I was asked to do test twice for porphyria as sample not protected and dont even know the outcome as neurologist left and wasn't seen but also for many years and bloods ive not once been asked to fast before a test yet for some things this must surely be relevant and thyroid checks are done any time of day in bloods yet ive learnt there's an optimal time for testing. I will argue the inflammation tests till the cows come home. I have been many a time told I have no inflammation (re bloods) and if that is the case why does my body clearly show swelling.why would steroids reduce it, if its not there in the first place.
its ok saying bloods ok or this out of range that out of range but when nothing done and symptoms persist how do bloods have any relevance at all.
Interesting what you say about hospital blood tests as I dont know if gp has ever had or seen them. I recently asked gp about antibody test and was told it was a hospital ordered test id have to see them about it. I thought care was supposed to be joint up.
I wonder if I should become a blood donor to get my bloods checked accurately 😡
I phoned local immunology department, who do the blood tests of this sort for local GP surgeries.
( I had symptoms of systemic autoimmune disease which GPs agreed could be autoimmune but they like froze and did not suggest anything.)
Phone call was put through to Immunology clinical lead, who was very helpful. She told me that the test to ask for was an AntiNuclear Antibody (ANA) test and that if I could not get this through my GP to change GP as it was a test I was entitled to. She said some people had to change GP.
I then asked the advanced nurse practitioner who I was seeing most of all. She did not hesitate to order it. Two years earlier she had suggested my symptoms warranted referral if they continued, but covid then prevented this being followed up maybe.
ANA then came back strong and positive but I did not get results for full ENA screen, some got missed.
So GP also has to request full ENA screen, if ANA comes back positive this then should be done.
Not sure this was done in my case.
I think we need to bear in mind the test methods, like for anti DsDNA, can vary re: cut off and reliability.
Dr Thomas suggests better tests are available too now.
I am fortunate to be able to get blood results online, from GP 'Patient Access' and Hospital Trust 'HealthierYou'
However it is the hospital access that gives me all my GP blood results because not everything gets imported to the GP system.
I actually end up telling my GP some of their results. They never import hospital results, so they may have to be prompted to view them too.
Also surprisingly my lymphocytes counts are often lower when tested at hospital appointments. Proof being that over successive days blood tests done alternatively at hospital department , GP surgery and then hospital, this time A&E, show ridiculous lymphocyte changes that could not sway back and forth so quickly. Yet testing is supposed to be done in the same lab. Maybe it is a different team ..different method..
I have joined my local surgery Patient Participation Group which meets with the practice manager and one of the GPs every three months, and has social patient-only get togethers. This is helping smooth things out as we gently give the patient prospective.
It might be done at the same lab but it all depends on whether they chose the budget version of the test or a more costly high specification or different assay. Every surgery, hospital department and even consultant makes their own decisions on which to use the cheap version or the sensible one. Often Emergency will use a better service from the same lab than the one used for routine monitoring by the hospital department, most GPs are in a lottery , mostly they use the cheapest test of all but in some cases they will spend out if the patient is complex and you've had irregular sets of results from different units.
Oh , but then you also get the clincher.
Sometimes your GP or Consultant will order the gold standard test but the lab itself is also given guidelines to follow by the healthcare service you are under and can refuse to do the higher cost test if it's not what they have been given authorisation to do by the health service paying the bill, so you can't even put the blame on penny pinching doctors or surgeries in many cases.
I learnt all about this from getting copies of my blood results and letters and having to fight to get a follow up Vitamin D test as labs are only meant to give them once a year per surgery per patient ( a hospital can order another) so if you are Deficienct you can't get a test after treatment to see if it worked. It hadn't between my hospital test and surgery one despite treatment but they all live under the assumption that if you take a supplement it will work. We contested the lab decision and got one I was still Deficienct.
I still had to wait another year after that one to check if my treatment had worked though.
If you don't use the high sensitivity tests borderline issues of inflammation, infection and early markers of certain health conditions are often missed.
Lymphocytes were 0.87 measured through Dermatology, then 1.74 measured through GP, then 0.68 when went to A&E. This was when I had had a bad reaction to Gadolinium used for an MRI resulting in a flare.
Lymphocyte results at doctors surgery have never gone beneath 1.0. Hospital ones do, even over same short time period.
Vit D was32 nmols/L at hospital appointment. Think this is quite low
Normal range 50 -250. I had to ask for Vitamin D prescription as neither GP nor local rheumatologist suggested it. Local rheumy had also said my symptoms were in my head.
Then I asked GP to repeat test four months later. Thankfully then 61...
That was three years ago. Not sure what happened then, as I never asked again, you get fed up.
Having difficulty though now getting Fultium as prescription defaulting to Strivit, coating of which causes issues..
Your Vitamin D level was only just above Deficient , it is classed as a Severe Insufficiency between 25-50 and requires immediate treatment . It is still classed as Insufficient and still requiring supplementation under new guidelines between 50-85. GPs have a terrible habit of giving patients with deficiency a very low supplement level of 1000iu- 2000iu and often for too short a period without being able to test if the treatment was effective.
A severe Insufficiency requires doses of 3000iu - 4000iu ( maximum). And you need to have your Vitamin B 12 and Folate tested because if these are Deficienct ( which they were in my case ) you can't metabolise Vitamin D or Iron properly so the supplements treatment doesn't work.
I was on 4000iu for over 18 months before my range increased above 40 because of my B12 and Folate Deficiency. After I began B12 injections and Folate my Vitamin D rose to 113 in six months and I've not experienced Anaemia since. GPs seldom think about testing B vitamins even testing the thyroid before this but B vitamins and Folate are often a common factor in people with Chronic Health issues and on certain types of medication.
NICE does recommend that people with long term health issues that can affect digestion or the heart , or on various medications , including statins, steroids , PPIs and various pain medications should get tested every 6-12 months for Iron/ Ferritin , B12 , Folate , and kidney electrolytes , and every 12 months for Vitamin D , and it is available on request from the NHS , if you remind the GP of the guidelines! If they refuse to do your baseline and monitoring blood tests you can ask if there is any medical reason that they will not do them, there won't be.
It's confusing because B12 Deficiency even without Anaemia causes the same or similar symptoms to Anaemia and Vitamin D deficiency as well as causing cardiac and neurological symptoms, Fatigue , chronic pain , insulin resistance, weight gain , muscle loss and numbness in arms and legs , skin problems and increased thyroid dysfunction.
Vitamin D is classed as normal between 85-115. At this point treatment can continue but at lower doses or doses on alternate days with the Vitamin D winter protocol ( taking a daily Vitamin D supplement over the winter months of between 1000iu- 4000iu).
I still take my BetterYou D3 and K2 spray every other day in Summer and everyday in Winter my levels up until Jan 24 were 111. I got this initially to supplement the 1000iu tablet they were giving me to top my dose up to the maximum 4000iu.
The spray is recommended and contains 3000iu in a three spray dose on the tongue.
Levels are too high and any supplements should be suspended over 118-120 because this can cause symptoms and levels above 125 can be toxic.
There are some people with certain conditions that can't take Vitamin D supplements though so checking your medications and history are important.
I know exactly how you feel though , trying to get the right treatment is a full time job and you feel like you have to choose your battles , always trying to get help for the immediate problem and then the Preventative help gets neglected.
I was diagnosed with low bone density only then I was prescribed calcium and Vit D. I was also taking high dose spray on alternative days . My Vit d and cal is back to normal now. I dreaded what it was like before . I have been on it now just about a year now.
You are right.First, you have right to access your records and request a print out of those results without having it authorised by a GP, although it is understandable that the need you to give them the courtesy for it to take 24-48 hours to sort out because they have a lot to do.
All you should need to do in any region of the UK is fill in a request and sign it,
There are only some very individual circumstances that a doctor or Trust can try to refuse you access but looking at basic test results isn't on of those.
So there's the first guideline they are breaking.
Second, unless you are asking for a full print out of your records or a large amount of print outs in one go they are not meant to charge you money for the information .
A page or two per time is not considered a request that uses a lot of time or supplies so that would not be considered as one of the times they are allowed to charge you for a printed record.
If your surgery is like my backward Welsh surgery and isn't even properly using a basic surgery app for you to access to see results and letters , let alone the more sensible central apps they aren't fulfilling the data sharing requirement that is expected from any surgery online. This means you have no choice but to request to be printed out by them because you have no access to print it at home. In that case , they don't have the right to charge you for a service they should be providing to follow the basic practice guidelines they are all given.
You can refuse to pay for these reasons and tell them politely but firmly that if they keep breaking the data guidelines by charging money for a service that is your right and making it more stating that patients need GP permission to access their data you will have to report them to the Intergrated Care Board ( ICB) about their breach of regulations. Trust me , unless they are complete idiots they'll probably pay you to collect your test results from then on.
The data guidance rules are under central government legislation not Welsh Health care so they couldn't change your rights in that case ......no matter how much they will all try to!
I'm in the same boat at the moment as I've got a general surgery due for my teeth which has been over a year in the making, and they want to do it at the same time as a kidney test to reduce sedations .....amazing in theory but its been eight months in the making with me checking up or chasing up communication because they just don't liaise as they need to when they need to. Now I've suddenly started to get diastolic orthostatic hypertension ( not that suddenly really I pointed it out in January when it wasn't as bad but the Cardiologist just brushed it off, despite the evidence at clinic, as " White Coat Syndrome" even though I've never had high blood pressure no matter what Emergency situation I've been in ( in fact it would usually drop into hypotension ) . This on top of my sinus tachycardia and POTs ( Dysautonomia) . It's only now at my annual sitting standing heart rate test on Monday that the GP surgery started to panic .....yes because it's out of control now at 157/132 after three minutes standing still.....up side my heart rate was under 99bpm!!!.
But it's still me that's stuck , chasing up being able to get a pre-booked GP appointment because they can't just book you in until the Managers release pre-book sessions!!! Chasing up the Holter test they wanted to book at their own sister surgery.
Now I will have to email the Cardiologist and find a way for them to get involved too without saying " I told you so" because the GP won't be able to prescribe anything with my other medications it's beyond their knowledge set of which drugs can be given or which might need altering.
To be frank , it's beyond the Consultants too, he usually follows my lead looks up what I tell him about and chooses one of those options to try ( it's the only advantage to that Cardio he will listen on specifics about the illnesses I have I just have to get him to believe the test results he sees with his own eyes first!)
I'm then going to have to get him to organise an Echo too and let Anaesthetics know because the blood pressure has been high so long it could have caused a heart change since the Echo they were all using from 19 months ago and I'm not willing to be sedated without making sure their isn't a chance something could have changed and make a problem for the surgeon, I asked the dentist today , whom is doing the flipping surgery , if they would contact the Anaesthetist instead to let them know. " Oh I don't think we can do that" .....no , what you mean is you could , it would be sensible you said so yourself , you just can't be bothered to do the work , especially if you can try and get the patient to do it for you because it is a thankless stressful task.
This is all so flipping stressful which probably isn't helping the blood pressure either, it's certainly a full time job I never wanted. Thanks for letting me let off steam , like you it's driving me mad!
Hi Wendy, I’m with NHS Scotland, our GP surgery keeps trying to sort out their online system but it never works, you are supposed to be able to order repeat prescriptions and appointments etc but it never works. I have to email my prescriptions to them as they don’t want you to call them anymore, when I get bloods done I only get a call from receptionist if something is wrong with them so I just wait for the call as there is usually something not quite right with them. My Rheumy always checks these tests before I see her and she usually sends my GP a prescription if she doesn’t like what she sees so I suppose that’s something. We have to pay £25 for a letter if we go abroad as my hubby has to carry some weird things in his medical bag.. This letter only lasts three months and we go quite a few times in the year. Half the time they don’t look at it, seems crazy that we have to keep getting them every 3 months. It seems harsh charging £1 for a sheet of paper, it prob takes a minute for her to press a button on her computer. Best wishes and moan away, that’s what this group is here for. X
I’m in Scotland too and it’s same ie nothing anccessible online or app - although hugely variable from practice to practice. The current one I moved to when I fell out with the last one over very similar issues to the ones you’re facing. I was lucky that I relocated and was just in the catchment area for this rural practice. They have been excellent and their website works well for the online GP consultation system and ordering repeat prescriptions. Better still I can get my DMARD monitoring (every 3 months for me with MMF) results by emailing the practice. Once they’ve been signed off by a GP they are sent to me electronically in PDF format. This saves on paper and print costs and I get them within two days of when they were taken.
All the staff are always friendly and polite and my only concern is that the two Gp partners, a husband and wife team, seem to be around my age (early 60s) and, although I really like them and their full time locum (used to be a partner until she retired) I don’t much like either of the younger GPs I’ve met. One just seems like a very bad dr and the other is competetant but unengaging young man with a pompous bedside manner. So I’m not sure what the future will bring for this practice and I dread having to go back to the old one with their payments for printed blood test results and their general hostility and barriers to getting appointments etc - very much like yours by the sound of things.
Meanwhile I do hope your spell of infections eases up. I imagine it’s related to being very immunesuppressed in your case. I’ve just started Rituximab so hoping I don’t suffer similarly this winter Xx
Hi Wendy. I'm also in Pembrokeshire and yes, I have no access to blood test results. The surgery staff are lovely but it caused quite a stir when I asked them to email me my blood tests done at the hospital:" We don't generally pass on this information as we are not allowed to comment on tests done for a Consultant". I was emailed them, but by special dispensation. Shriek!!! It concerns nobody as much as me! I asked my consultant to copy me in on any correspondence sent to my GP, and she did, so it's worth asking. Devolving the Welsh NHS was a bad move in my opinion. There is an old fashioned, patronising attitude towards well informed patients...we don't need to know.
Blimey! …. & on top of all that, there’s you, the poorly patient….I’m annoyed for you!
My thoughts -
1. Check the FOI (Freedom of Information) for NHS Wales. Here in England, if I’m struggling to obtain medical records, results, referral letters, reports etc, etc from GP or Consultants, my local hospitals have a Medical Records Department called, “Ministries” who are obliged to provide the patient with anything they request about themselves, (or others with appropriate documentation). CD discs of MRI/CT/Nuclear Medicine Scans etc can even be provided alongside the Radiologist’s reports….all free of charge. If you can’t find the Ministries Dept listed anywhere, ring the hospital switchboard & asked to be transferred through to them. Where I live, there are 2 separate NHS Trusts who have completely different methods for obtaining information from their own Ministries Dept!
2. How you pay should be your choice…you may prefer to use a card or write a cheque! Get GP surgery to write you a receipt as proof of payment, just to put them to a bit of extra trouble 😂…..Maybe Trading Standards could advise you as to whether GP should be charging for such services & that they’re requesting cash only?
3. Could your GP practice not email you the blood results? Seems the obvious answer to me….
4. Could your Rheumatologist request blood results from your GP?
5. Could you &/or your private Rheumatologist request blood results direct from phlebotomy lab?
6. Could your private Rheumatologist refer you for NHS brain scan, or write to/email your GP requesting they, [ie, the GP) refer you?
7. Your GP has a duty of care for you as their patient- they seem to be forgetting that, which is very remiss of them. These days patients can request referrals & 2nd opinions, no reasonable request should be refused. This will be in the NICE guidelines somewhere…..
Grim for you, I recently heard a talk by Prof Harris in Edinburgh who woke us all up by saying
You have to be your own advocate!
I was alarmed but not surprised she is only saying exactly what you are experiencing. Everything has to be checked and monitored by self!
Not reassuring when you can be so tired, it’s a big thing to keep up with.
The best information she gave on keeping in best condition with lupus was to try and keep your BMI below 24. I have some work to do for that, apparently Wendy it will improve effectiveness of any treatment you are on. Wow eh we were all quite shocked by that but I am trying as it’s something I can fix for myself.
We need all the energy we can get
Good luck Wendy I’m surprised your consultant doesn’t arrange your blood test issues a bit better.
We have a rheumatology helpline at Ninewells Dundee which is active and helpful.
Self advocating has been normal for me since around 2017, I was diagnosed in 2013 but only realised how badly I needed to do this later, after being denied a second opinion and realising that I couldn't access the LUPUS UK Centres of Excellence all in England.
I am over weight and this is very challenging. I cannot exercise and I am now post-menopausal at 50, which I am realising effects your metabolism so much! However when I have discussed this with my private lupus doctor, he is not so concerned. I am over weight, but I wouldn't say obese, but the BMI might say I am....However for someone with lupus I do think I am fairly active, but I know I cannot exercise as this tips me into bed for days, so a balance that is very hard to get right.
I have no NHS rheumatologist and this causes issues however they all tell me I don't have lupus or no longer have it and can come off all my meds. Hence my refusal to put myself through that time and time again.
Prof Harris did say that in her opinion if you are ANA positive at diagnosis you are always considered ANA positive in her books. She knew it wasn't supposed to be used as a disease activity marker - if only everyone was a good as her!
My late partner lived in Neath , South Wales and had the Patients knows Best App( I think that’s what it’s called!) and could access his hospital blood test results and hospital letters etc online within hours . I’m not sure about GP monitoring tests though .
reading everyones comments, it never fails for me to understand why are we called the united kingdom, when each section of our small island does things so different to each other?! At 69 I’m still learning new things everday 😊
Wendy, a cough is worrisome if you are taking MMF. Is there anyone at your practice who knows about lupus - that is the person you should be seeing.
Also - you could ask your consultant(s) to register you for the childishly named "Patients Know Best" (used to be renal patient view and then patient view, now PKB) - which should let you access most of your blood results in a timely way for free.
I’m sooooooo very sorry that you’ve experienced all of this especially while being so sick love.
To be this sickly and get this deplorable treatment by your medical team is inexcusable inappropriate and unacceptable. Too bad there’s no place to report such people and get them reprimanded to comply without retaliation.
It’s almost impossible to get our records over here. We have to go to the hospital and (like you ) pay for every sheet of paper. Our dad passed and the insurance company demanded copies of every medical paper regarding his care. There were over 2,000 pages…then we were instructed to mail them to an address that had only a small mail slot for delivery. I spent 5 months pleading with the insurance company to help with this crisis. On the last day of my dealing with this young insurance agent he brought me to tears. I guess that melted his heart as he gave me an address where someone would physically sign for and receive the humongous box mailed. Eventually everything was sorted but that took almost a year of battles that caused my husband’s 1st widow’s maker heart attack and my worsening overall health issues.
Those days where the patient was the first priority in all things are over. Seldom do we see the ways things used to be and that’s so unfortunate and wrong.
Precious Wendy I hope and pray that all things will begin to be sorted with your nightmare of medical issues and no help to get the care you deserve and so desperately need.
I’m here for you to listen support and give my compassionate empathy to. Please don’t give up; don’t let them get away with this deplorable treatment of you instead of the proper and timely care you need and deserve.
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