"Compassion, communication, competency and commitment were severely lacking in the care of my mother"

About: St James's University Hospital / Older people's healthcare

(as a relative),

I would like to praise the urgency with which surgical intervention took place. Within 24 hours of arriving at A&E my mother received what I believe to be life saving surgery. Please pass on my thanks to the consultant Mr Sarela and his team.

Naturally the recovery phase and its management are equally important in achieving a desirable outcome for any patient post-surgery. It is this aspect of her care where my concerns lie.

During my mother's stay on Ward 82 there were close members of her family present every day. I visited most days and was in constant contact with my stepfather, who was at my mother’s bedside between the hours of 1400 and 2000 every day.

From the outset and repeatedly through her stay on ward 82 I reiterated to staff that she had Alzheimers and Vascular dementia. I explained how this meant she was an unreliable historian and answers to the most basic of questions could not be relied upon to be accurate or true – because her short term memory was almost nonexistent. I also explained how she would need prompting and assistance in eating food, taking medication and going to the toilet. The presence of dementia was clearly written in her notes.

Despite this I lost count the number of times in those three weeks on ward 82 my mother was asked questions which were reliant upon memory, and other patients in beds alongside her’s commented how food and water was brought to her bedside but no-one offered her assistance to eat or drink (the domestic staff serving food were very friendly however).

At one stage a urine sample was required and staff had placed a sample bottle on her bedside table expecting her to remember to collect the urine. I work with dementia patients on a regular basis and the majority of staff I witnessed on ward 82 that spoke to my mother either did not have the skills necessary to be able to make allowances for, manage or communicate with a dementia patient, or they were simply not made aware she had dementia during handover. Communication appropriate to the patient’s needs I consider a basic fundamental cornerstone in any care plan and on this occasion it was repeatedly and grossly wide of the standard required.

The first week following the operation no-one from the surgical team had come to the ward to see any member of the family to tell them of what surgery had actually taken place. The nurses told us that part of her small bowel had been removed. I am unaware if a member of the team had spoken directly to my mother – this of course would have been unfortunately a futile exercise as the information given would have been instantaneously forgotten. I was keen to ask questions and find out what procedure had been performed on my mother and to also ask what the surgeons thoughts were around the original cause of the presenting problem and the likely prognosis. I don’t consider the increasing sense of need to ask these questions constitutes an unreasonable request. I asked the nurses if it would be possible to meet with one of the surgical team – I was told this would be highly unlikely and was given Mr Sarela’s secretary’s telephone number.

I took it upon myself to read my mother’s medical notes on a daily basis and this gave me some insight into the procedure undertaken and the recommended management to follow. She had undergone an ileal resection and was awaiting results from histology to perhaps help indicate a cause. During the first week of reading the notes I came across two instances of basic mismanagement by the nurses. On one occasion the 0900hrs ward round had asked that she be placed on an IV saline infusion of 75mls/hr. she was currently nil by mouth and was only drinking very small amounts of water. I had arrived on the ward at around 1800hrs that day and no infusion had been set up. I politely asked the nurse why this was and was told that sometimes the doctors forget to tell them to which I replied that it was written in the notes as an instruction and that surely they should read these.

The following day the ward round had recommended that she was to start eating food (again written approx 0900hrs) but when I arrived that evening and asked her husband whether she had been offered any food he reported that she hadn’t and he had simply assumed she was still nil by mouth. Again the nurses when asked were not aware that she was to commence eating food that day.

It was at this point I was approached by a senior nurse on the ward who said I was to stop reading the medical notes due to patient confidentiality. I was then asked why it was I was reading them in the first place. I explained no-one had been to visit us from the surgical team to explain what procedure my mother had received, and due to the fact that basic instructions given to the nurses from ward round visits were not being implemented, this had prompted me to check the notes on a daily basis. The senior nurse asked if it was an issue with the quality of the nursing, to which I replied yes, followed by them asking me what I intended to do about it. My reply was nothing further for now as I had made them aware of my concerns and I expected that as a senior nurse of the ward they would consider my plea and act accordingly. After my mother's first week on Ward 82 I no longer read her medical notes.

The first few nights and days she was on Ward 82, she was frightened and disoriented. She appeared to be very anxious and paranoid. She had no recollection that she had undergone surgery or even that she had been acutely unwell. In her world she was in a strange room with strange people and she was unable to make sense of it. It was as if the experience of the operation and general anaesthetic had exacerbated her dementia greatly, as prior to hospital admission she was a calm and polite person. I understand that an ordeal such as the one she had undergone in the previous 48 hours can often has this type of effect on dementia patients. I was therefore surprised to be told that on her first night in the ward she had managed to escape and was eventually found in the basement of the Bexley wing.

Staff said they would get a healthcare assistant to sit with her on the second night to ensure this did not occur again. No healthcare assistant was arranged and she once again escaped from the ward during the night. Thankfully on this occasion she only managed to get to a neighbouring ward on the same floor. I feel it was just pure luck that a disoriented dementia suffering 74yr old patient, having just undergone major abdominal surgery, did not come to serious harm or at the very least risk jeopardising a successful recovery through being poorly monitored and allowed to wander off ward. To allow this to occur on two consecutive nights is completely unacceptable and seriously calls into question the quality of care that is able to be provided during a night shift on ward 82. I believe on those nights there were only 2 Nurses for a 32 bed ward. I believe the posters on display as you enter ward 82 states that the desired number of nurses is far in excess of this figure.

After the first week on ward 82 she appeared to be deteriorating. During the second week we were finally met and spoken to by doctors to give us brief updates on the progress of her recovery. There appeared to be a problem of infection of unknown origin along with her being off her food and not having had a stool for several days. The knowledge that she had not been eating and had not had a bowel movement was because her family were resilient in taking note of this – the bowel and food charts at the end of her bed were rarely updated with the day’s events. I would have thought that in the case of a patient having had bowel resection that an accurate history of bowel movements and food intake were of utmost importance for the daily visiting ward rounds to make informed decisions and conclusions about my mother's ongoing treatment plan – by the absence of these records it would appear that the nurses I met on ward 82 would disagree with my opinion.

My mother went into hospital with no bed sores. After 3 or 4 days on Ward 82 we noticed that she was developing erythema on her buttocks. We reported this to another senior nurse on the ward immediately who confidently replied that arranging for a special air mattress to be brought the following day would be no problem whatsoever. Despite numerous requests over the following days the mattress did not arrive until 4 or 5 days after it was requested.

She was discharged from the ward with developing bed sores to her buttocks – the ward failed to pass on this information to the appropriate district nursing team and as a result it took the family nearly a week to get the relevant help in place. This apparently neglectful and quite frankly slack approach to ensuring the discharge procedure ensured continuity of care has, in my opinion, contributed greatly to the fact that my mother is now at home trying to recover with the added complication of very painful bed sores which so far do not appear to be healing (skin broken down and bleeding) and have the potential to become a major threat to her health. Bed sores are common and all nursing staff are trained to be proactive in their management of them – prevention is far more superior and effective than cure. This approach was first taught and adopted in the 1980s. This philosophy does not appear to be embedded in the framework of care that ward 82 adhere to. Bed sores should not occur in hospitals today – the manner in which they have in this instance constitutes, in my view, neglect.

On one occasion when arriving at the ward, as usual I enquired how my mother had been and was told as usual that she was fine and doing well by nurses at the nursing station. When I arrived at her bedside I noticed she was shaking. I made a note of her respiratory rate and it was 28 breaths per minute at rest. I looked at her observation chart and she had been recorded as having a respiratory rate only an hour earlier of 18. With my observations she recorded a significantly higher early warning score than what the HCA had calculated. I found this to be the case on several occasions. The shaking that my mother was presenting with was potentially rigors. These presenting signs went unnoticed until I brought it to the attention of staff.

The point of highlighting this is that I genuinely feel that on most occasions when I asked about how she was doing – either on the phone or face to face with staff – it would seem I was always met with standard replies and a majority of the nursing staff I met seemingly had no insight into the stage or rate of progress of recovery that the patients they were assigned to care for were actually at, and more significantly they were unaware of signs of deterioration. Genuine meaningful and informative updates on my mother’s journey of recovery were never given to her family by Nursing staff, the amount of participation that staff had with us was minimal. It felt at times, I’m sad to say, that no-one really cared.

After two or so weeks on ward 82 medical staff decided she was imminently close to discharge – possibly the following day – I was naturally pleased to be told of this. My stepfather had phoned me to tell me of the news. I arrived at hospital that very same day and was quite shocked to see mum just lying there looking as poorly as ever. She needed to go to the toilet so I assisted her from the bed to her feet to walk to the toilet. As she stood she wavered and I noticed the loss of a radial pulse and she almost collapsed. I put her back to bed and asked if staff could do a supine and a standing blood pressure as I suspected my mother had a significant postural drop in blood pressure. I very much doubt if this would have been picked up by nursing staff as all blood pressures were recorded either supine or sitting. All blood pressures up to this point had a systolic of no more than 130mmhg and were sometimes below 100mmhg.

Despite this medical staff had restarted all suspended medications including several antihypertensives. Whether this decision was a contributing factor to the now presenting orthostatic hypotension is difficult to say but feel that if I had not picked up on the basic observation of postural drop in blood pressure the likelihood of my mother falling/collapsing in the very near future was high. Falls are the main cause of morbidity in the elderly and so in this context I consider the failure of staff to discover the orthostatic hypotension so close to discharge as substandard care.

On the few occasions where I had a clinical discussion with various doctors none of them could give me the cause of why Mum’s ilium had become necrotic and needed to be removed. I was told that histology results would perhaps indicate a cause by one doctor but on a different day and by a different doctor I was told histology would be unlikely to provide useful information. I was accepting of this. I understand medicine is vast and complex and very often answers to questions just cannot be found. Mum was discharged home in the morning in late February 2014. I managed to get to visit her that very same afternoon.

My stepfather showed me the discharge notes. Imagine my shock to see before me in plain typeface a diagnosis of Neuroendocrine Carcinoma of the ilium. None of the family had been told this diagnosis. This is a significant and very serious condition and none of us are aware the prognosis. To break such news by means of a discharge letter home with the patient is appalling conduct. I have taken the letter and have yet to break the news to the rest of my family. I wish to have more information so that the process can be done informatively and with compassion and care – just how the hospital team should have carried out this duty in the first place.

I have listed the major concerns around the poor quality of care my mother and her family received whilst on ward 82. I note from the Leeds Hospital Trust Website the extensive narrative given to how the Trust is striving to improve in key areas of care such as pressure ulcers and falls by means of the ‘safety thermometer’ and asks relatives if they would recommend the ward to other people based on their experiences. Please be assured that ward 82 has certainly failed the friends and family test for this particular family.

The Ward is certainly clean, airy and appears to have all the latest equipment but the fundamental human factors of care such as compassion, communication, competency and commitment were severely lacking in the care my mother received. I have over the years had much contact with patients and their relatives over the care received from NHS Trusts. It saddens me that the journey I have experienced in the last several weeks can at times feel endemic to the whole of the NHS when you speak to other service users.

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Response from Leeds Teaching Hospitals NHS Trust We are preparing to make a change

Dear gtp

I am sorry to read about the experiences you have described during your mother’s admission to ward J82. This is not the standard of care and patient experience we aim to provide and I can appreciate the distress this has caused you and your family.

I believe the experiences you have described have been investigated and I have asked Matron to contact you to ensure we have resolved this to your satisfaction. Alternatively, if you would like to discuss the issues further please contact the Trust's Patient Advice and Liaison Service (PALS) on 0113 2067168 or email patient.relations@leedsth.nhs.uk

I would like to thank you for your positive comments about Mr Sarela and his team. I will ensure these are passed on to him directly.

Thank you for taking the time to give us your feedback.

Response from Clare Wyke, PALS and Patient Experience Manager, EMBED Health Consortium

Dear gtp,

I am so sorry to hear about your mother’s experience as an inpatient at St James’ Hospital. It was upsetting to read about what you all went through and I passed your post to Diane Hampshire, Director of Nursing and Quality at NHS Leeds West Clinical Commissioning Group (who commissions the service). She has replied by saying:

“I would like to thank you for taking the time to share your family’s experience. Every patient should be treated with respect, dignity and compassion and we are already working with the hospital to understand the reasons for your experience and what steps the hospital can take to improve and maintain the quality of care.“

Kind regards


Clare Wyke

Patient Advice and Liaison Service for NHS Leeds West Clinical Commissioning Group

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