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"Care of a disabled woman"

About: Royal Infirmary of Edinburgh at Little France / Gynaecology

(as a service user),

Awful nursing care on ward 210.  A general lack of care, compassion, safety, infection control, with only a few pleasant nurses. In September 2022, I arrived on the ward at lunchtime on a Friday from HDU after drastic surgery (for cancer), the nurse in charge greeted me by telling me they were really short staffed - not my fault or responsibility. They saw the catheter from my op and told me they couldn't take it out as they don't have time - 7 hours before shift changeover and left it in.  Luckily nightshift that night were better and took it out at the end of shift for me.  

The side room I was in had no blind on the window, for privacy or light reduction.  There was no chair initially to sit in, and the one brought was odd and not comfortable to sit in so ensured I stayed in bed, which hampers recovery.  The bed did not rise and fall and was stuck at a height that was just too high for me, I had both my walking stick and walking frame due to my disability, so had obvious signs of poor mobility, I am unaware of any fall assessment done for me.  The chair in the shower was a plastic visitors chair initially - no brakes- which was unsafe, it was swapped after time, I think 4 days.  

A towel was basically thrown on the end of the bed with no one checking if I was safe to shower alone after my op - I have since been told by a nurse that after such a major op I was at risk of fainting (which nearly happened on day 5 on the ward) and I should have had help.  Also my disability includes balance issues, which means it was not safe for me to shower alone initially.  I did ask for help and one care assistant told me they wanted to encourage independence, so I didn't get help.  It took till Monday and a change of staff to get help and a shower from a care assistant with so much care and compassion.  On Tuesday I almost fainted first thing and the same nursing team again had care, and were gentle.  

Wednesday the care assistant that refused to help my shower was back on and this time did help me, after me having to repeatedly say it was difficult, is was grudging and made me fell very uncomfortable, I felt a loss of dignity.  

On a ward round, the nurses were requested to remove the multiple steri strips, I tired that day and the following day, I rang over the whole afternoon and only I care assistant came, the nurses never came, never removed the strips.  

My pain was never fully controlled , the medics had problems getting the right balance of pain relief, and early on I woke up in the middle of the night desperate for morphine, but the although the dose had been lowered, the increased frequency hadn't been recorded so the nursing staff left me in pain for hours and made no attempt to get help.  It was rectified the following morning.  

The day I was leaving and the day I kept trying to get the steri strips removed and failed I also need more morphine (on top of the fentayl patches) however as the nurses did not come into the room for hours I was again left in pain. They came into the room after my partner appeared and handed me a closed bag of discharge meds, which I preceded to tear into to get pain relief, and only then did they finally help me.  It was truly awful, I dreaded those two nurses in particular, they had no compassion and gave me very little care.   

It was a time where face masks were still required in wards, and areas where there were patients, however the nurses took their face masks off at the nursing station in the area/corridor between the side rooms and bays, which meant I was unable to walk anywhere safely outside my side room.  I was immune suppressed and had no COVID protection as the meds I have been on meant I had a blunted response to COVID vaccines.  

It also meant that this lack of infection control, ensured I didn't exercise by walking in the area outside the room and so increased my risk of clots and slowed my recovery.  The only person that was careful about mask wearing and told another patient to put a mask on when they wandered into my room without one was the cleaner!   

There were other low points in my care on this ward, however in summary, poor infection control, lack of risk assessment, lack of support for a disabled person - meant it was unsafe and put me at risk of injury, a lack of personal care, leaving me unwashed - again poor infection control, poor pain control (nursing), a lack of care and compassion and at times a callous attitude.  A general disinterest in patient safety and well being. 

Due to the poor level of care, the lack of compassion, the poor facilities, the way I was made to feel a bother, the poor attention to pain relief from the nursing staff, the lack of support for even the basics of washing, it was an awful experience at the time I was most in need of care and compassion after drastic surgery (oncologys description) for an aggressive cancer.  It was truly awful and should never have happened.

Staff attitude

Staff attitude


Seeing the whole me

Seeing the whole me


Pain relief

Pain relief


Medication

Medication


Room

Room


Bathroom

Bathroom


Food

Food


Privacy

Privacy


Heating

Heating


Being listened to

Being listened to


Calling for help

Calling for help


Nurses

Nurses


Doctor

Doctor


Other staff

Other staff


Environment

Environment


Finding your way

Finding your way


Noise

Noise


Access to outdoors

Access to outdoors


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Responses

Response from Aris Tyrothoulakis, Director, NHS Lothian 2 months ago
Aris Tyrothoulakis
Director,
NHS Lothian
Submitted on 16/05/2025 at 10:08
Published on Care Opinion at 10:43


Dear charliecb66,

Thank you for taking the time to share your story. We are truly sorry to read about your experience on Ward 210 in September 2022, especially at such a vulnerable time following major surgery for cancer. The events you describe are deeply concerning, and it’s clear from your words that you felt unsafe, unsupported, and treated without the compassion and dignity every patient deserves.

We recognise that this experience occurred some time ago, and unfortunately it falls outside the timeframe for us to investigate it formally under the NHS complaints process. However, that does not lessen the importance of what you have shared. It is never too late to listen, learn, and reflect on care that did not meet the standards we expect.

Your account raises a number of serious issues: from pain not being adequately managed, to lack of help with basic personal care, and infection control practices that did not support your safety during the pandemic, particularly significant given your immune suppression. You also describe physical barriers to your recovery, such as unsafe equipment and a lack of mobility support, which is particularly troubling given your disability. The feelings of being ignored, left in pain, and treated with indifference are especially hard to read, and we are so sorry that you experienced this at such a difficult time in your life.

We would like to assure you that your story will be shared with the senior nursing manager and the medical team responsible for Ward 210. Feedback such as yours is vital, it helps us reflect not just on the systems and standards in place, but on how patients are made to feel during their time in our care. Where possible, we want to use your experience to improve the care we offer to others, especially around safe discharge, individualised support for patients with disabilities, and respectful communication from staff.

While we may not be able to carry out a formal complaint investigation due to the time elapsed, we would like to thank you again for sharing your story. We are sorry that your time in our care was not what it should have been.

Warm regards,

Aris Tyrothoulakis

Service Director- Women's and Children's

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Update posted by charliecb66 (a service user)

While I appreciate your response and acknowledgement of what happened. This will only be helpful if practises and staff attitudes change on the ward. And this means that the ward managers need to take a long hard look at practises and how certain staff interact with patients. I would question the department culture that has allowed this to happen, and I believe that starts with the managers and the head of services. I won't be the only person to have faced this and I feel probably not the last.

I will say the surgeon that looked after me post op was very good, he showed the care and compassion missing in others. Ward 210 treatment of me is still negatively impacting me, and my subsequent healthcare.

So if sharing my upsetting and at times poor care helps improve care for others - good. If you do not learn from these stories then I think there will be worse outcomes for other patients.

Response from Mariska Vernon-Stroud, Patient Experience Team Lead, Patient Experience Team, NHS Lothian 2 months ago
Mariska Vernon-Stroud
Patient Experience Team Lead, Patient Experience Team,
NHS Lothian

I gather feedback from patients to recognise good practise and supporting improving services in NHS Lothian.

Submitted on 16/05/2025 at 15:38
Published on Care Opinion at 15:40


Dear Charliecb66,

Thank you for your further comment.

You've raised serious and valid concerns about ward culture, staff behaviour, and leadership responsibility. We fully recognise the impact your experience has had, and that genuine change depends not just on listening, but on reflection and action.

We are grateful that you took the time to raise these concerns so clearly.

Kind regards,

Mariska

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