💬 Discussion Topic: What could improve your trust in healthcare information?

[AnnaHU]

What could improve your trust in healthcare information?

If you are comfortable, please share or explain your experiences that have shaped your opinion in the replies below!

[YorkyinNorfolk]

1. That it comes from an official & central source (like the NHS website),

2. That it’s regularly updated and refreshed with new findings/thinking/research.

3. That it’s qualified/backed up with references to any accepted research, University/medical studies etc.

4. That it’s in an easily digestible and plain English format that most people could understand.

5. That it includes maintained links to other reading or relevant information.

[TiggerMe]

If they actually acknowledged the importance of optimal vit and min levels and gave guidance how to achieve this, rather than waiting until we are deficient before flagging it up!! Would be a good start

[Ontherun81]

Hi Anna

I would be more trusting of healthcare information if it offered a broader range of details such as information from papers that have been written by researchers and Professionals around the world. It seems that there is such a narrow minded view in this country regarding blood tests for instance. My thyroid levels are always 'in range', what range? If I have side effects of low thyroid that effect me daily, then meds aren't right!? If I have all the symptoms of Lupus & Sjorgrens but my blood test says no, why do consultants put a stop to appointments? It is possible to have Seronegative blood tests but still have these conditions. Other countries recognise this and check heart, lungs, kidneys, liver etc. I have read in a couple of papers that sometimes by the time you may be positive there is damage to organs. So we need more out of the box thinking. Fibromyalgia specialists, access to Endocrinologists (which my GP has refused)we shouldn't have to wait around or be bounced around narrow minded consultants who are not forward thinking and dismissive in attitude. Even GP's make sure that with my thyroid blood tests the a tual readings aren't on the app because I question what's abnormal with a test. Openness & honesty are required to be more trusting.

Kind regards

Ontherun81

[89874438863 in reply to Ontherun81]

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[katieoxo60]

I belief we need more knowledge within the new young Doctors or maybe doctors should specialise more . Maybe GPs should train in specific areas of GP practice so at some GP practices you could get diagnosis rather than having to attend a specialist at Hospital . I.e some surgeries have Asthma clinics , blood pressure clinics. Minor injury clinics in outlying areas rather than everyone having to attend A&E placing large responsibility on local hospitals to supply this service when many feel the burden should be shared as it is a National service. Those with more than one illness would be better serviced within community clinics with community nurses and medical advisers, leaving trained Drs & paramedics to deal with severe health matters and home visits to the highly vulnerable. Diagnostic test returns need to be dealt with quicker and more thoroughly even in large practices to allow the Gp to commence treatment quickly to prevent further damage to patients health. One area I find falls down is medical history , no tallying of symptoms that may suggest a change in a persons health , difficult to explain in words. i.e chronic illness does not go away it has to be managed, but also you can get other illness besides. Plus the chronic illness can flare or become worse . Frontline workers need to be trained to deal with these things not just diagnostics.

[BLOSSOMing in reply to katieoxo60]

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[JOY2THEWORLD49]

Hi

For me all Healthcares should on every step 'acknowledge' that the progess as offered is being done in timely fashion.

Correspondence should be allowed or a telephone call.

Also that followups should be clearly stated on discharge.

I never got a followup when transferred to a mior hospital. I had an Endocrinologist (not even a Dr) on the Stroke Ward whilst there. I argued to delete Metoprolol on my prescription list. Proved again breathless, fatigued, and it gave me pauses. I couldn't get the Dr to change the BB.

I want to see all Medical staff to be in front of Research. Now the ? is "Are BBs the best med for AFers?".

cheri JOY. 75. (NZ)

[claudejgreengrass in reply to JOY2THEWORLD49]

Atenolol is "better" or rather less bad for people who need a beta blocker and have asthma

[Lottyplum]

I read recently (from a Dr in USA) that doctors are 17 yrs behind with the latest research! So, you can have all the healthcare info you like, but if our drs are not up to speed across the board, what is the point? Also, after the COVID debacle, I question everything that comes out from the NHS, be it in adverts in the GP surgery, to the TV adverts trying to get us to take more jabs for more 'prevention'. Research from around the world challenges them and so do I. Why not address building up yr immunity to aid better good health?So, for me, truth+NHS info often don't match. And please, don't get me going on self identification,+ female only staff/wards. Personally, I think the NHS has lost the plot+no amount of 'info' will improve their image!

[mrskiki]

Difficult one as I find there is good up to date healthcare information, it’s in books by specialists, online and in research articles.

However many healthcare professionals don’t seem to acknowledge it or be willing to deviate from own beliefs. They wanted to give statins and didn’t seem to believe me that their own guidelines advised against it with hypothyroidism.

It was my mum that suggested a I had endometriosis, took the NHS over 30 years to diagnose me. Too late really it’s now caused complications.

I think that my hypothyroidism had been there and worsening for a number of years but I only got diagnosed when absolutely obvious and badly impacting my health now.

I manage my own vitamin and mineral supplements as I now aim for the optimal ranges, NHS is bare minimum, although since Covid there seems to be an interest in vitamin D.

I’m going to have to do same with my thyroid condition as NHS don’t seem to acknowledge active thyroid hormones at low end, again happy with values at extremes of a distribution in someone who has trouble functioning for more than a few hours a day. I pay for my own blood tests, some by nhs labs, but I am the only one interested in the results.

Some good healthcare information is there, it’s just that for some conditions the system we are in does not always want to know.

[JOY2THEWORLD49 in reply to mrskiki]

Hi

I'm in the bracket of scans that will diagnose thyroid papillary cancer return or not.

The first was my yearly now on fourth neck scan to show if I have any return of the cancer.

None showing in the 3 prior.

But do the front on scans actually see? This has come up. Well, in all 4, I get a new scanner person, I have a different ultra sound tool.

So this latest scan in early Feb show a ? over 72mm of calcification.

The 2nd CT scan with dye shows 2 lymphs 6mm & 7mm calcified and 1 x 19mm x 9mm ? what is it ?

Last Tuesday I underwent a PET/CT without dye and with dye.

Results are inclusive because the radiologist have no former images of the 6 lymphs calcified between 7mm - 2.3mm.

Now what?

I had a full thyroidectomy including 12 Right Lymphs removed with 2 infected with the papillary cancer.

? also is an anemona (benign tumour) on my pituitary Gland which needs an investigation via MRI.

Sounds like the yearly checks weren't good enough.

I joined some research companies as I have nursing qualifications and these crop up if I ask ?s. These like Radcliffe are up to date.

But the PET/CT scan prep (RA TRACERS) was so confusing when NO prep page on the 24 hrs prior to the scan was done and yet answers to my question said..

NO HIGH ACTIVITY 24 hrs prior

Eat no carbohydrates or sugar fruit or deserts

and as for taking my daily Synthroid, stop for a week prior or another said STOP for 3-4 weeks.

So I followed it to the letter apart from synthroid and I did not tale it on the prior day or the day of my scan. I would have been about 6 instead of over 10.

Even the RA Nuclear Scan way down 400kms away sent me a letter first YES/NO for having RAI Treatment. Keeping back the other pages of prep, diet, on the day no food and water when I could drink before drinking the solution, food etc.

I sent a note to my surgeon saying that I needed support as my TSH would be so high and me in hypo was great for my heart for a start. I was taking CCB to bring down an over 200 heart rate. I had AF and had had a stroke because of AF.

Honestly throughout my journey from Flu in Russia brought in by 2 Australians to Stroke with AF and saying NO to Metoprolol but still got it .. this was only the start of my journey which within 4 days of Stroke being diagnosed with Thyroid cancer.

Best of luck - and it is through luck and 'work' you make your way through your personal journey - hopefully you imerge having learnt heaps on the way.

Also declining Drs who did you a disservice on the path.

I have declined two. One an Endocrinologist who forgot to advise through a holestic medical situation and a Public Heart Specialist who left me uncontrolled, even after a change BB. The 2nd 24hr H/Monitor showed 156bpm Day.

We need to make a statement.

I went Private momentarily and was put on CCB Diltiazem (180mg AM too high) but 120mg great. H/Rate is now 60s Day.

But this former problem about whether Papillary cancer returned or not leaves me stunned. But at least we have a base now and the monitoring needs a big step up.

cheri JOY. 75. (NZ)

[Teaching]

To improve my trust in healthcare information, it has to be more open and do not withheld any information . Patients should have every information of what they are going into and not being trapped.

[JOY2THEWORLD49 in reply to Teaching]

Hi

There's not enough trusting pamphlets full of information which I would favour.

But I read one after my Stroke. I did what it said "wait 6 weeks' and get a Drs Pass to Drive. But instead I got a Drs request to have a Driving Test. Of course, because that was not already requested, I had to wait a further 6 weeks.

Yes, I got 10/10 and had to pay for the Driving Test. Also they kept my licence which they should have returned having passed with flying colours!

JOY

[Teaching in reply to JOY2THEWORLD49]

Exactly what I'm afraid of. The say one thing and do the opposite. Hope you got your license back.

[JOY2THEWORLD49 in reply to Teaching]

Hi

Yep but I had to ring them.

Meanwhile I had 2 vehicles with batteries emptied so a call from AA did the trick.

I so missed my driving and using my Camper. It was from October - January NZ's best months to explore my Country.

Thanx, JOY

[Bassetmommer]

Get insurance companies out of dictating what a doctor can prescribe and do for a patient.

[Python42 in reply to Bassetmommer]

YES!

[Dolphin009]

Communication between medical consultants and GPs.

[Hopefull22]

An apology would go along way 4 yrs and very little input all they seem to do is push pills, at our son, which they keep changing Never getting to route of things

I for one wouldn’t be 👏 on my doorstep for NHS

It’s whole families that this affects not just the patients. No support.

Although we as parents have had excellent support Headway here in Ayrshire

We struggle to get our sons to connect with them. He doesn’t go out at all, only goes between our house and his own He’s lonely , his friends don’t make contact which is sad

[Artgreen]

not all consultants have good bedside manner which can be traumatic to the patient. Identify and retrain those that need improvement or move them from patient facing roles. Delivering my diagnosis was not handled well and I was even more stressed due to my fury towards the dr in question only to find this was well known within the hospital.

[DasyB]

Well my GP practice needs to be taught that communication is a 2 -way thing, not just top down diktats by sms. And it would be nice if they could apologise:

For sending me to the Minor Injuries Unit for a chest xray for sternal dishiscence post OHS, when MIU don't do xray,

For refusing to treat ear infection unless the nurse can phone me - but I can't hear because I can't get my hearing aids in due to infection and swelling, costing me £90 to go private.....

apologise for not having a hearing loop available in reception,

apologise for not understanding how hard I work every day to hear what everyone is saying when they are just so important they can't be bothered to repeat themselves...

Should I mention the 2 months with a dental abscess - and 'What do you expect me to do about it?' from NHS 111? his is just par for the course these days it seems.

Also it would be good if th eNHS could acknowledge and apologise for the ward nurse waking me up at 4 am after 14 hrs in A&E and nil by mouth, shaking a 50 ml of oramorph in my face and making me take it when I was not in any pain, and then getting annoyed when I started vomiting, drooling and passing out. Should not have been done - clearly a chemical cosh because she didn't like me on her ward and was too busy to give me time to get my hearing aids in.

For the anaesthetist refusing to believe that I was given it and wondering why I was struggling and my blood pressure was through the roof being called a liar...

For the Cardiothoracic surgeon telling me he never heard of an allergy to metal?

No apologies for any of this, I am now really wary every single time I am forced to see them - it is no wonder they are not trusted.

[CDreamer]

Healthcare is not about making people ‘better’ for me - healthcare should be about prevention of ill health - which primarily means education.

Education starts from day of birth with hygiene, nutrition, exercise and knowledge as a way of being and should continue to grow as we grow. We all have a response-ability for our own health care and that needs to be taught from birth.

I am constantly alarmed at the lack of knowledge most people have about how their own body’s work and about how unique every human is and therefore how unique the offer of healthcare has to be to be efficacious. There is no one size fits all.

In the UK the establishment of the NHS was well intentioned and to some extent successful in improving the health of the majority when lack of hygiene, infectious pathogens were the biggest causes of disease and killers. In our 21stC the biggest killers are self inflicted conditions such as heart disease, dementia, diabetes and respiratory diseases, often caused by excesses of indulgences and a lack of knowledge or acknowledgement of just how important self care is.

We live in the dark ages of healthcare which has gravitated politically to being organised for profit and greed not for wellbeing of people. We as a society have no respect for health or wellbeing, we don’t value it so will not invest in our own wellbeing, let alone others.

Being heard and acknowledged and believed is the first basis of all wholistic healthcare which relies primarily on the therapeutic relationship of helper and patient. Obviously that did not happen with DasyB - and not an uncommon experience. I have learned from experience that I have to check every prescription suggestion from GPs because when you have a rare condition they have no knowledge of, they don’t have the time to read all your notes, inform themselves and advise from a place of care and knowledge.

Unfortunately we as a society have downgraded healthcare into a culture of pill pushers so I have no faith in healthcare providers and after reading The Death of Science I have little faith in that happening in my lifetime.

I know I am asking for Haute Couture when the only thing on offer is currently fast, disposable fashion but the first step to changing the culture would be to lose the ‘expert’ many medics insist on wearing and adopt a more collaborative and multi disciplined approach to healthcare which includes the ‘patient’.

All change starts with the self - there is a very quiet but growing healthcare community which knows that Lifestyle Medicine starts by changing practice and acknowledging people with kindness, compassion and understanding and acceptance of a person’s experience and using the best of scientific knowledge and ability to treat each person according to their unique biology, personality and being. Might take time to catch on but I’ve met the few doing their utmost in a culture of ‘medicine’ where if you speak out against status quo your career is doomed and you are ‘gagged’. First change that culture.

[R2522]

I would like that my MPN journey is discussed with an MPN specialist subsequent to each of my appointments.I wish that my GP would be kept up to date re mmy doagnosis & prognosis so that they can be well informed.

I would like that the many treatment options are discussed with me & the resons why my haemitologist might choose one specific medication over another.

[MalcolmCClark]

Trust is a two way thing. The most important for me is being listened to and appreciation of the fact that I know about my condition and in some cases being the expert of my condition which is a combination of BPD and OCPD

[DENZ01]

Think that it's too late for me to improve my trust in the health care in this country.Not only do I have to do my own research on latest diagnosis but I have even found myself explaining to the GP what the diagnosis actually is 🙄

I also received the results of a heart scan with the findings, not great news,but I phoned the cardiologist a couple of weeks ago and they said that I had an urgent appointment for January, so I said that it couldn't be that urgent if I had to wait until next year,oh no, it's urgent for January 2024! But the cardiologist is running behind!

Getting my prescriptions each month has become farcical (same 12 medicines every month), but I'm almost resorting to begging for the prescription.

(I could go on & on listing the failings that just I have received, but we'd be here all day)

So,unfortunately I'm afraid that my trust in the health "care" is non-existent and I don't believe that it can be sorted out in my lifetime.

Unfortunately, the NHS is no longer fit for purpose.

[Python42]

I honestly just want doctors to take what I'm saying seriously (they often think I'm making stuff up because it's not common) and help finding a specialist when they say I need one

[DandyButch]

There is this myth that the NHS is for everyone. No. It is for the trust and management and cost cutting to the detriment of the patient's health. Since everything has been outsourced to private companies, quality has gone downhill rapidly. I.e. catering, cleaning, bank staff who don't care because they won't see you again, and, them having to use specific suppliers (who are by no means the best value, by far) for everything. I would love to know who owns these companies, how much the bosses get paid and their shareholders dividends. Someone, and not those at the bottom of the ladder, is making loads of money off the back of the NHS, and the people they employ.In my opinion, the NHS needs reforming from top to bottom, to re-establish the trust of the tax payer who pays them.

Having seen, in depth, the 'care' provided by the ward nurses and doctors, I think it should be called 'care-less'.

In the last ten years particularly, I have witnessed the downfall, which is why so many people are being failed by the NHS in one way or another, sometimes even dying due to negligence at the basic level. No-one is ever held to account, and we always hear the same response, 'lessons will be learnt', which they say but ignore.

I have no trust or faith in the NHS. Nor NICE for that matter. The only people that have been good, in my experience are the paramedics.

[DENZ01 in reply to DandyButch]

I completely agree with what you have said. The NHS needs to be stripped right back & started to be run properly but not by more management than medical staff.

[FrenchRonin]

I think that the main thing that could improve my trust in the information is the transparency of data: people explaining why they make their recommandations, based on what data, how they selected the data, who interpreted the data and so on.

For exemple, learning that most people in the studies for Asperger’s were boys helped me understand why my first questions about getting the diagnosis were often dismissed by professional who didn’t expect that women of more exactly AFAB people could get that diagnosis even if the presentation was different than in most AMAB

[Twoblu]

Proper communucation. Someone in the ICU actually have knowledge of agencies family can get support and advice. About Carers, homes, options about any choices families have. A leaflet explaining what hapoens if your loved one has to go into a home.

Funding you can apply for

Accurate up to date relevant support.

[BarrySimpson]

LISTEN TO THE PATIENT

From January to July 2016 I had 23 blockages in my suprapubic catheter. Then I realised that most of them occurred at the same time as urinary tract infections: if they could be prevented, so too would my blockages. Over the following three years I carried out a study during which I had no blockages. During this study three hospital consultants have been involved in guessing the cause of my blockages: bladder stones (2), kidney stones (1). All recommended that I should have hospital tests. Together with a locum who diagnosed emergency admission for suspected septicaemia, that makes four medical practitioners willing to guess a diagnosis in the absence of evidence, all of them wrong. I contacted one of them and sent him my paper: he showed no interest. The other three were surrounded by gatekeepers to prevent patients making contact.

dailystrength.org/user/prof... Preventing Urinary Tract Infections and Catheter Blockages and incontinentsupport.org/phpB...

[katieoxo60]

Hello AnnaHU , some interesting facts in this post replies. I have just had a terrible ordeal at my hospital and then to add insult to injury the nurse suggests I take Lithium before another biopsy is done to relieve my anxiety. Lithium is a no no for renal impaired patients, she said its just a minor tranquiliser. Its not really a tranquiliser at all and has many serious side effects. My Dr has suggested I seek a private opinion if I want a thorough report. Whats the answer to that would you think. ? Not everyone has funds to go private and care in your own home costs from £999 per day and upwards.

[Nightingales]

Competence . Two recent examples. My ENT consultant missed a severe sinus infection on an MRI. My GP picked it up thankfully. Secondly, my rheumatologist wrote to my GP and asked her to prescribe a medication that I am allergic to. He initially prescribed this med 6 years ago and told me never to take it again. I just wonder if they have become so busy they don’t do due diligence reading the notes or checking for allergies. My GP surgery is much better at reading previous notes.

[JOY2THEWORLD49 in reply to Nightingales]

Hi

I'm in NZ and our clinic lost a superior Locum 80s Dr because they told her 15mins per session. 64 patients to see in a working day!

Finally not for her. She said that she could not work that way!

She, herself, had experienced AF so she was a great role model. Drs can only put Specialist's meds up not change them to another group.(Blockers).

cheri JOY. 75. (NZ)