Patients Know Best Reviews 591

Received an email from a random hospital from some distant part of the UK inviting me to register. The email claimed that this random hospital holds my data. It took 3 phone calls to establish that this is not a scam, but an email was sent to me in error. No respect for GDPR rules. This is concerning as they might hold some medical data.

Some time ago I got an invite to sign up and on paper this seemed a good idea. The reality is rather different.
The hospital trust had suggested I join and so I did. Initially there was the occasional update for me to look at but this was just a repeat of the letters I had received for appointments so duplication.
Having been refused a simple blood test by my GP, I suggested the practice look at Patientsknowbest. 'Never heard of it' both the receptionist and the doctor said.
Nothing much changed and every 6 months my test results were uploaded for me to look at. However, I was still getting a telephone appointment AND a letter telling me the same thing.
Checking the information today I find that 4 of the last 5 test results are missing. But no matter, I have letters with the results.
Since October last year I have had a number of other unrelated tests for a potentially serious condition. This has meant visits to two hospitals within the same trust, for x-rays, for bloods, to see a specialist and fitting recording equipment. There is NO RECORD OF ANY OF THIS TREATMENT.
So it seems most of the hospital trust and the GP either couldn't care less about this facility or have no idea it even exists despite the trust being signed up to it.
2026 is the digital age but I have to rely on a large, bulging paper file of documents containing all my medical history. Complete and utter shambles.

Initially had a problem but e mailed to get it rectified.The following day,my results were available except radiology.

Can’t praise it highly enough. I used to have to wait a week to get test results from the doctor, now it’s mostly the same day.
All my info in one place. Had to give details for a life insurance application recently and I found dates and details in the app.
Shows trends of blood results - useful if like me you have tests regularly (diabetic)

I had a problem downloading a document and Tarra was an absolute star and guided me through the steps to resolve my problem. Thank you Tarra for all your help.

I knew nothing about this ill-named organisation until I received three messages from it after a medical procedure as an out-patient. I was unable to access those messages, having never heard of Patients Know Best. Then I found the security requirements to register were quite beyond the rather limited IT facilities I had. So three hours of my time down the drain and to no real purpose at all, it seems. Why cannot they simply identify me through my GP practice?

Super response. MY GP and the hospital staff were unaware of how to fix the problem. Jo at the help desk sorted it immeditaely

The assistance that I required on my Patient Know Best communication was easily actioned.

I found this website easy to use and intuitive. I had reason to contact the support team as I somehow ended up with two accounts because I changed my email over the years. The support team responded straight away and resolved the issue. This meant a lot to me knowing someone was there to help and not just an automated bot.
I hope it continues to run but it will only work if all the Health Departments use it. At the moment, I am not seeing all my records. I also know some GPs don’t even know what it is.

A really great service and to keep updated by the NHS. It is a one stop shop for your appointments etc

Personal details updated without problem. Great

I think it is just a waste of time. Another 'app you need'....for nothing. First, you must be an accountant, as the info you add has to be exactly like your tests figure. To most people it looks like calculus, unless you are a doctor.

More disturbingly, in places it says 'doctors might not routinely check here, so contact them directly'.

So what the heck is all that work for? It gives a false sense of comfort, making you believe you are doing a lot, but in fact probably is just a waste of time and effort.

When I first created my record, it unfortunately wasn’t connected to a hospital because my trust at the time wasn’t using the service. However, since moving to a new area, I automatically received an email letting me know that my new hospital is now connected to my record.

I’m really happy that this happened automatically, and I’m finally starting to see some of my records. It makes such a difference being able to access this information.

I hope more and more places start using this service, as it’s really beneficial for patients to have easy access to their records.

Absaloutaly useless, I get emails saying about my hospital updates, but cannot read them , as they have NOT sent me the invite or access codes, try to contact them and NO response, a normal email straight from the hospital would be better and NOT bother with this waste of time company

Patient knows best is a good heading it's a shame that the data site does not keep up. I am fed up with how poor this site is. Appointments made then cancelled with back to back e mails. Appointments that I have cancelled that are then reinstated The amount of confusion worry and stress that this site dishes out is beyond belief. I would like to end my communication with this site and get all my files deleted. Previously you made a telephone call got an date for an appointment put it in your diary/calendar. Turn up for your appointment.
I have been in hospital today for a day patient appointment. Now I have found out that the appointments that I thought I had have been changed back to the previous dates. I feel this is just another way for all the greedy people to ditch the NHS and make it go private. Get all the records by fair means or foul bankrupt the NHS and then contact all those that you have information for. How do I get off the wreck. Why is there no simple way of contacting them?

There should be a no star option for this application it is virtually impossible to use causing frustration and stress when a simple email or message from the hospital will suffice.

Thank you for your reply however I still consider this application to be a complete waste of time and money on the part of the NHS. Sadly yet more bureaucratic mismanagement.

This is the perfect way for all my medical records to be made available to me and the clinical team looking after me. The sooner it is rolled out across the whole of NHS Wales the better for everyone

I get emails that are saying your records has been updated but please read any paper letters you get. I then find that an appointment has been cancelled ( with no notification). I get a new appointment at a different place but no clariry as to what either appointment is about.

And the name - "Patients Know Best" is pathetic. If they did why would I see a doctor ffs?

For my recent minor case all communications and my treatment went perfectly. I could not be happier. Then I get a tricky IT glitch and you would think it would take forever (or never) to sort out but..….it was fixed really quickly and Peaches / IT dept were incredibly helpful. Clear proof to all the complainers that there is good work going on behind the scenes!

I have been going to many different departments and trusts trying to get details for over four months. I have requested SARs and gone through multiple layers of information request databases… only to receive nothing that is of use.
I eventually got through to peaches at patients knows best, the NHS itself has taken four months to not complete the various requestsAnd still has a waiting list of over nine months.yet peaches somehow managed to get 80% of the information I required in less than three weeks. The only things I don’t have are handwritten records and original ECG results printouts
I would say have your patience nose best IDs securely available somewhere in case you ever become unconscious for a length of time and people can’t access your details properly or if you get brain damage and forgetbecause that’s what happened to me….