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
To view profiles and participate in discussions please or .
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.
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.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
