In your opinion, what are the most critical aspects of patient experience that should be considered in healthcare research?
Potential talking points:
Communication and Information Accessibility:
How effective are healthcare providers in communicating with patients? What strategies can be implemented to ensure patients feel well-informed about their condition, treatment options, and next steps?
Empathy and Compassion:
How important is empathy in healthcare interactions? Share examples of memorable experiences where healthcare providers demonstrated exceptional empathy towards patients.
Wait Times and Appointment Scheduling:
How do long wait times impact patient satisfaction? What improvements can healthcare facilities make to streamline appointment scheduling and reduce waiting periods?
Quality of Care and Treatment Outcomes:
Beyond the patient experience, how do treatment outcomes influence overall satisfaction? How can healthcare organizations strike a balance between providing compassionate care and achieving positive medical outcomes?
Digital Health and Telemedicine:
With the rise of telemedicine, how can healthcare providers ensure a seamless patient experience in virtual consultations? What challenges and opportunities does digital health present in improving patient experience?
Feedback Mechanisms and Continuous Improvement:
What role do patient feedback mechanisms play in driving continuous improvement in healthcare services? How can healthcare organizations effectively collect, analyze, and act upon patient feedback to enhance the overall patient experience?
Feel free to share your insights, experiences, and suggestions on these topics or any other aspect of patient experience research that you find relevant!
Written by
AnnaHU
HealthUnlocked
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Very often, across the world, women's experience of health difficulties is put down by doctors to 'Its all in your head.' Gender perspectives of (women's) patient experience should therefore inform healthcare research by taking their views and feedback seriously.
Having cared 24/7 for my mother following neck surgery which left her paralysed from the neck down, I was witness to the utterly dire care provided by hospital nurses when she was in each of 4 different hospitals. I have an encyclopedia of failures recorded in my memory. This frightens me for my own future healthcare if I ever need a hospital stay in advancing years.Also, the home care package provided was shoddy, erratic, unreliable, Sometimes the staff couldn't understand English!!!!! And they would talk together, in their native tongue when attending my mother. Many many times I had to intervene because they were not aware of her needs and limitations. When bedwashing, they would use 1 bowl of water to wash and rinse!!! Also, the care company do not send the same people, because they do not want their staff poached, so lots and lots of different people. So, having to repeatedly explain pros and cons. After about 6 months, I cancelled them.
I had heard from my godmother, when she needed home care package, that they were not much help for her, wouldn't help her if she asked, spent a lot of the time on the phone, then had to leave for next job.
I was a bit sceptical at the time, but found out the truth later with my mum.
The truth is not out there, or, it's deliberately covered up.
When my mother went in to a care home for respite care, the food that was served to her, I wouldn't give a dog. I visited most days, and saw the food. They didn't even offer to help her eat. She could only just use one hand to grip, but not twist. She couldn't cut food herself.
After every hospital stay, I had to complain, not only in person to the ward sister, but also in writing, because of continuous poor care, at every hospital, some several times.
Every time , I received an apology, and assurances that "lessons will be learnt". They weren't because each time, same old, same old.
Some things that happened were truly cruel and despicable.
Also, because my mother had to use a special wheelchair when she went for hospital appointments. I had to hoist her. And because the only way to get to the hospital was by hospital transport, you have to be ready by 7am to go to hospital regardless what time the appointment is. After the appointment you have to wait for transport home. You could be out for 10 hours. Far too long for a disabled person. It is ridiculous. One time we were over 12 hours door to door.
Naturally, my mum couldn't even have a change of continence pad, because I couldn't get her out of her wheelchair. There was no facility offered for this at the hospital either, also the hoists at the hospital were not compatible with the slings provided for use with the home hoist.
This is just the tip of the iceberg.
Geriatric care in hospital is seriously lacking. They do not consider the extensive needs of the elderly, and the manpower needed to care properly for them.
I’ve experienced diabolical’care’ even in private hospital. Refuse to go to my County hospital after last experience, and I complained, got a load of cobblers, better off at a vets.
so sorry I’ve had same experience , years of neglect through progression , no treatment waited 5 years for neurology appojntment which was awful, letters after appointments not true to fact and dared to complain and absolute cobblers in return. I have nowhere to go now absolute distrust . My father refuses to go and he needs to but I can’t talk him into it as he’s right not to. There is no decent healthcare in this country available with covid brexit and crisis just excuses. I speak for myself and own experience but I’ve witnessed with daughter and brother too and feel doomed. Not once was I looked at and listened to and I agree my dog is treated better at the vets, they listen they examine and test with compassion and empathy and do all for his better health. To healthcare we are not patients just a pay check. If there was any doctor worth his salt who would like to prove me wrong please contact me. I won’t hold my breath.my county hospital is the pits .
I echo your sentiments, after what I observed I am personally petrified of ending up in a geriatric ward and going through what I saw my parent and other poor souls go through. Once in there they never walked again, were in constant pain and there were posters about how to die for them to read.
It is access to whatever health department you need that is a big problem. Trying to get the initial appointment is key. Then it's the wait for the next department's appointment. I will be waiting for 45 weeks in pain and with a huge impact on my ability to live my life for a knee replacement. Then it's the aftercare, sending people home within a day of surgery or the next day is not providing the care needed.
Communication is also key. Listening to the patient is essential. If they don't take into account what other conditions the patient has and then tailoring that treatment to minimise any adverse effects then the outcome can be dire. My last operation caused me to have a huge CFS relapse because I wasn't kept on a drip for 24 hrs after the operation. 2 years on I am still trying to get back to where I was.
Waiting ages in a lot of cases means what you initially presented with is a lot worse . This must cost more money and time . Post op care is inadequate and because my NHS surgery was done in a private hospital I had no follow up appointments and went home at 10.35pm the same day to bewilderment .
!. Having had a stroke with AF Sept. 2019 the Endocrinologist Dr on the Ward suggested meds, She listed BB Metoprolol and I said NO it wil make me breathless. She added it to my list and stated that I could reduce it!
I did down to 27.95mg. ! year 4 months demanding a Heart Specialist and follow up, the 24hr Heart Monitor showed bpm Day 185 I couldn't exert myself and 47vg at Night with pauses!
2. Diagnosed with Papillary Thyroid Cancer, I was rung in the transferred hospital to be asked for a consent to a biospy. Yes, I said and waited 2 months before ringing the ward and Dr.
3. At the point of having my heart monitored at the base hospital, the stickies were removed as I was going for a carotid arteries ultra-sound. Then I was whisked away by St Johns Ambulance to another hospital closer to home.
Never did I get my heart monitored.
4. Biospy results, appointment with Surgeon. He wanted a voice box check before operation which he wanted to do in January 2020.
5. I waited and waited. Sent up to Kaitaia for nurse evaluation anaesthesia. Then down to base hospital for actual anaesathetic check.
6. Had voicebox check OK.
7. Rang Booking Clerk re January operation. She spoke to my surgeon. Yes, he said. She got back to me January Booked out by her Colon/Bowel Cancer patients, my surgeons Booking Clerk away on holiday, my file was still up in Kaitaia!
Finally I nailed her down to 4th Feb 2020.
Riding on Free hospital bus to Whangarei 2 plus hours, I didn't answer a ring then I did my personal support person saying that they wished you to come in tomorrow! But I said I am on the bus. She rang back saying it's OK.
Surgeon came to see me, delighted I was there because he wished to start saline drip bags early. He said 11am operation.
I had 1.5 saline bags from 5am. A blue dye bag an hour before operation, started operation at 1pm.
8. Yearly checkup ultra-sound takes a lot of my time.
The other is grumps about followups, bookings not done, specialists, ongoing. And on my 4th year checkup recalled. Referred to Auckland Hospital. Trying to get information from my Base Hospital - no ring Auckland Hospital.
Finally got an email YES/NO to radioiodine! Not that you need to drink some RAI solution, 2 days later Scan and Appointment with their Specialist, Diet and stopping Thyroxine for Scan. Nothing about caution about my heart.
I have all the paperwork but it seems to not relate to a Radio Active Scan - the Diet and no thyroxine for 21 days. My TSH will soar 30 plus and what about back to high heart rate! I take Diltiazem to control it. Do I have to take more?
NZ or UK it seems no care, empathy or timing action. What about meds I had to go privately Heart Specialist and ther I was introduced to CCB Diltiazem.
As someone said I am my own CEO to my health.
Thank you Anna the best practice is via private but I cant afford it ongoing.
Because efficiency, timely, truth, information, gaining the patient's confidence, listening to the patient, choices, best practices, suitably qualified surgeons, anaesthetists, specialists, opinions to take note of, safe practise, printed matter to mull over.
In NZ we cannot sue a professional! Those woman with Johnson & Johnson Sling causing damage cannot sue our specialists who put them in without warnings.
In 2003 - 2022 I struggled until it was an ACC issue. Our Corporation who will make good these procedures. But I was back tracked to date of damage 2013 and finally a removeable of this horrid mesh in 2022 but ACC waited for actual proof damage and this was done my 2019 3D scan showing 1mm from damage to 2022 actual damage.
The Accident Compensation Corporation gave me no compensation but paid for the overnight stay. Did it contribute to my stroke and AF! Probably 5 weeks pre Stroke when ACC declined my operation.
Please relate your story to enhance accountability in the medicA trail of woes.
Hello AnnaHU , I have been having treatment since last year at my local hospital unfortunately it is to do with cancer and unfortunately is more than just a benign subject . I have to say there have been some poor issues in respect of patient care & poor staff working environment , plus a few unthinking comments that might upset patients . But in general I have received a very high level of care& speed. And hope the next week will be the same and help us to move on to the treatment stage. But sadly hiccups do happen even when someone is seriously ill , my difficulty was one of how disjointed the service can come across . Following a routine test abnormalities were found in two different body areas but the outcomes were dealt with by many different departments which I felt might confuse some patients but that's just my patient perception. The process for myself worked fairly well .
my 60 yr old autistic mentally disabled brother died on a ward in MKUH from ASPHYXIATION in a tuna sandwich confirmed by top coroner. Drowsy on incorrect dose of meds after a serious bowel operation and fed sandwich without supervision, it was all lodged in trachea and chest, nothing digested. No disciplinary nothing. He’d been incarcerated in mental units for 40 yrs and deliberately ignored for autism. This is all true.
a sense of confidence that the medical teams at the hospital have the capacity to look after you is helpful. Ours is on its knees. In the 5 years since my diagnosis I’ve had 4 consultants and no continuity of care. We try as hard as possible not to be a burden on them but it’s not a sustainable situation. Lack of confidence creates stress .
Speaking personally, I feel that patients should always be respected and heard. The health professional should be honest about both treatment and waiting times.
They should always be open to feedback, and having a good rapport with patients goes a long way in patient trust. I have sometimes left appointments feeling somehow small and my symptoms trivial. To the person on the receiving end of this no longer feels confident in sharing how they feel and the impact that it might have on their life. So I think that initially it should be good communication.
Quality of Care and Treatment Outcome The quality of care and it's outcome is most important to me because if at the end of the day the main aim which is to get better should be achieved.
I have had a suprapubic catheter since May 2013, a few months after I had an accident resulting in spinal injury at the base of my neck with paralysis from there down, spasticity (muscle contractions and spasms) and double incontinence. Both my anus and my urethra have been left closed except with manual intervention: I hardly ever pass urine via the usual route; nurses visit on alternate days to give me a bowel evacuation.
Until about a year ago, I had very little trouble with my catheter. Then I started to get blockages more frequently. A catheter blockage is a terrible, life-threatening experience: tremendous shocks of spasms; I have great difficulty reaching my phone to call for a nurse. By the time she arrives which can be up to two hours later, my bedsheets are wet with sweat. 'Sorry I took so long. I've had a lot of catheter blockages tonight'.
Until about a year ago, Nitrofurantoin could be relied upon to prevent blockages: it kills the bacterium Staphylococcus saprophyticus which creates the sediment which blocks my catheter. It still does; but if even a very small amount remains, my catheter now blocks, whereas until a year ago or thereabouts, it would have been washed though with no blockage. About a year ago I started using catheters of a different design.
I have told this to the nurses, who tell me that overnight, most of their calls are for catheter blockages.
The scandal is that no-one listens to them. The prevailing attitude among medical practitioners is that catheter blockages are something for the nurses to fix. They shouldn't be.
As long s those buying inadequate equipment with taxpayers' money, don't listen to patients who have to suffer from blockages and nurses who have to unblock or replace them - with more catheters and increased sales - why should they change? We should. make them listen. Stop buying their equipment.
I didn't get much empathy from the doctor after I woke up from the coma. He was beyond rude and told me it was because I was overweight which was such an emotional and embarrassing dressing down when I simply asked 'what happened, doctor'. I had no recall of going to surgery for a bowel obstruction, getting sick in HDU the next day. I got sepsis and multi organ failure because it was my fault they said, I just would have liked someone to fill in the blanks because they never explained to my family why or what caused the sepsis or why it wasn't spotted in time or why when I was in agony for 2months did they send me out of hospital and missed the chance for surgery 2 months earlier , open honest discussions would save a lot of distress instead of blaming 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.
I would like to be able to have a sensible medical and also full symptoms based discussions, not just a single issue per appointment that misses the joined up picture.
The GPs and many endocrinologists do not measure your active thyroid hormones, they measure your pituitary TSH and sometimes FT4. If someone measures their blood pressure at home and sees it increase, then went to the GP , they check your blood pressure, not something else. Not so with your thyroid hormones.
If I buy the replacement hormone privately that can cause problems at the surgery who then don’t understand the results.
This all leads to late diagnosis and suboptimal treatment and physical complications and other conditions etc.
1. Outcomes for the patient. Does a referral, and any appointments that follow, actually help the patient?
Sometimes feel patient and clinician focus are different.
Clinician ticking boxes lots of them. But patient-centred care lost. Patient can't interact and influence process and it leads to lots of hospital visits, little progress on diagnosis yet increased risks to patients
Example:
Repeated major CT scans showing nothing. Each equivalent to 60 / 70 chest xrays.
Eye hospital - each time a day of waiting in a clinic. Then repeat visits for scans, maybe ever two or three months when one a year is enough. Maybe doctor working remotely so no chance to ask questions or follow up on worries without visit to eye causality another day.
Being called up for mammogram a year early because NHS behind. Then not rearranging appointment for next year on request so patient loses mammogram because did not take a year early.
Needing MRI of head but when MRI of eyes /orbits done, it could not be extended a few cms to include area of head also needing scanning.
All examples of inflexible non patient-centeed pathways
Too many single issue apointments where often referred to wrong place anyway.
2. Do diagnostic pathways work?
Example
- Thinking of the field of rheumatology some people do not get a highly elevated ESR often used to determine if there is inflammation.
- The 2019 SLE Lupus / Classification criteria intended for research are being used by some to determine who is seen yet bloods for the markers can be negative. Some patients seen regularly with no symptoms. Others with lots of symptoms without positive bloods, dismissed and now need to go private for UCTD diagnosis when in the past criteria was based on more than 4 of 11 standard symptoms. Some patients diagnosed years ago are also losing their diagnosis for same reason. Caseload being controlled but those who need help most sometimes not helped.
3. Capturing patient feedback at a higher level than hospital trust.
Example:
With MRI scans use of Gadolinium. The eGFR itself might not be a sufficient criteria to exclude those who may get adverse side effects, some of which can last. When there is an issue it is hard to follow it up. Trusts use nationally defined criteria. Even when patient provides feedback to a trust there is no way for patient to have dialogue with those who set national standards. The patient is left with little confidence anything will change or be reviewed. Trust compliants process and outcomes not sufficient, things can be too easily brushed over or misrepresented.
Maybe having something like FDA that exists in the States as well as NICE.
4. Patient literature can sometimes be really poor. Most patients have a reasonable science education.
There is not enough on risks.
On the phone you can often only speak to those booking appointments. There is nobody to answer queries. Told on the day of appointment someone will, but they don't.
5. Outsourced services. How do we provide feedback?
What do we do if something goes wrong?
Are staff sufficiently trained?
6. Investigations
Time taken to receive specialist blood and scan results can be months.
Worrying things are missed in scans.
Blood test methods vary and different cut off used.
Tests required for diagnosis may be dependent on being able to get extra tests done and repeated privately. Those only using NHS have less chance of getting positive results.
More standardisation after deciding on best practice.
In Rheumatology, finding better more realible markers of disease activity and to differentiate between conditions.
it’s a grand idea for patient feedback to be acted upon or enhance experience but years of feedback have changed nothing for the better and the most critical is a doctor wanting to be so for the right reasons , with each patient a priority and treated with respect care compassion and empathy, . Communication needs to be on a personal level, not diagnose someone and tell them to go google it. Even people with the same problem are individuals and same condition can affect differently STOP putting everyone in a box.
I have no story to share of positive experience of empathy or compassion as there has never been any, it has never existed in my experience of healthcare infact the opposite , how absurd for a rheumatologist to give an unfitting diagnosis and tell me be glad I don’t have cancer. How dare she assume I didn’t. The only sign of compassion and empathy has been a doc doing a scan telling me he’s so sorry he can see how unwell I am and he hoped I found a doc interested to help. In 7 years I haven’t yet.we need more than hope from healthcare.
Wait times for appointments are so damaging not just to satisfaction but to life . When you have health problems you need to be seen at point not weeks months years later. More specialists are needed. My local county hospital has one rheumatologist, no wonder people are getting sicker sheer lack of healthcare,
Digital healthcare is dangerous in many circumstances and should never be used as first port of call only as follow up, face to face clinic appointments should not be replaced with appearance of symptoms as is just another failure of healthcare at this point.bring back home visits with mobile doctors, bring back matrons in hospitals , technology can cause harms as well as good and virtual consultations should not replace physical appointments other than informative or way of follow up on treatment or to explain conditions and treatments AFTER seen.
Blood test results , any test results in other words data cannot and should not ever be the sole reason for diagnosis or not, clinical pictures signs and symptoms listening to patients and hearing them , physical examinations, are more important and skilled doctors. Bloods are a help not an answer.
CCTV is everywhere around us , until specialist can be trusted , maybe appointments should be recorded , patients should be able to record appointments audibly, too many times doctors write letters after appointments which are nothing like the appointment had, omitting things, neglecting things , falsifying things and it is appalling. Many specialists are in denial or prove they don’t listen, that way they can have no excuse to not hear the patient or hear their own words or deny them after the fact. Patients need protecting ,land assurance and may need to refer back to appointment .if specialist are putting the patient first and have nothing but the patients best interest at heart then this should not be a problem. I as a patient have nothing to hide so have no problem with this and if doc has nothing to hide either then it should be standard practice.
You also shouldn’t have to apply for hospital notes each patient should have a copy of their own medical files hospital and gp, identical copies and patients shouldn’t have to Chase and fight to be to be heard or seen when already in health problem . The nags is failing us and will continue to do so if doctors not held to account for poor service. My life and health are worth so much more
I got a telephone appointment with my Rheumatologist after 15 months which lasted precisely 2 minutes and 35 seconds. This is in South Wales. I am used to being dismissed by medical professionals, but this one was really special. I have had brilliant treatment as well, but not in Wales. No communication, no empathy, nothing.
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