"Extremely poor care and some good care of my terminally ill Mum"

I would like to share with you my mother’s experience in the Leicester General Hospital, Ward 22.

You may wonder why I am writing to you, maybe, just maybe someone may read this and know a way to ensure practices I have witnessed recently will not happen again in our local hospital, or in some way try and improve the way we do things. I myself witnessed what happens on this ward every day for nearly 3 weeks, I spent hours on this ward and am seriously concerned for the welfare of some of these patients now and in the future. Other patients have also spoken up regarding the same issues. Patients that have had surgery and recovering on this ward for a few days, who can eat, drink and communicate well should be fine and perhaps have an acceptable stay on this ward. It is the patients recovering from more serious conditions I worry for and the “code zero” I am extremely distressed to have heard. Unfortunately this code was made in regard to my mother and was also heard by my mother which is most upsetting. This is what has prompted me to write to you in hope no other family has to endure this agonising journey.

My Mum is currently suffering from terminal ovarian cancer (known as the ‘silent killer’) only diagnosed over a year ago after being offered a “70 Year health check” by her local GP who picked up a higher than average reading of her CA125 blood test. Mum had all the usual symptoms for ovarian cancer, bloating, back pain, indigestion and tiredness which is often disguised as IBS. Unfortunately my mother’s cancer had already progressed to a late stage upon diagnosis. My mother bravely started chemo immediately at The Spire Hospital in Leicester and was operated on in March 2016 at the Leicester General where she had her large bowel and ovaries removed, and bits of tumour removed from a number of other organs in her body. Losing her large bowel meant she had to have a stoma, an ileostomy bag. She got on with this huge change to her body so positively and courageously. For the next 9 months she learned to cope and live with her stoma with confidence. Mum was amazing and has been an inspiration to many family members and friends. She always said she could be dealing with something so much worse, and realised that hundreds of women in the UK are also dealing with it too every single day, many of which probably don’t have a strong family support network like we are lucky to have which is crucial for this heartbreaking journey. Severe vomiting started on a few months ago and mum was readmitted to The Spire Hospital in Leicester where she remained for the next 7 weeks and received wonderful care and support. Mum was too weak for more chemo at this stage and so the surgeon was prepared to perform a laparotomy peritoneal biopsy (basically an operation to open her up and find out what was going on. ) Being placed on the Surgeon’s emergency operating list, Mum was transferred to the Leicester General Hospital, Ward 22 with the expectation of surgery 2 days later.

I can now begin to tell you what my sisters and I have witnessed, but worse of all, my mum, having to personally experience such lack of care.After fighting so bravely and courageously from the day she was diagnosed it was so unfair to see her have to endure 19 days  on ward 22.

Mum’s operation was cancelled  as there were no beds available in intensive care/ high dependency where it was likely mum would be following surgery and mum was told ‘there were patients with greater needs’.

Over six days more often than not, nurses did not attend the call bell to assist with going to the toilet or attend the TPN machine alarm for at least 30 minutes. On one occasion it was 90 minutes before a nurse appeared. Mum has been on a TPN (‘Total Parenteral Nutrition’ – basically her food line) since for months due to her vomiting. Most of the ward nurses at the General did not know how to use the TPN machine, and one nurse had set the speed incorrectly (130 instead of 82, the deputy matron acknowledged this to my mum and had to stop the machine for hours as the flow speed had been too fast. ) The constant beeping of these machines is enough to send you mad, my mother’s TPN machine seemed faulty at the beginning as the alarm was constantly going off. If it wasn’t my mother’s TPN machine, it was someone else’s. The TPN is Mum’s life line, she is unable to eat properly due to vomiting. If felt like the nurses disregarded the importance of this and this behaviour made Mum anxious, upset and distressed as it was hours between getting the machine functioning properly. Ensuring Mum’s strength is absolutely vital, especially in the preparation for her operation that she was already extremely worried about however most of the nurses did not seem to understand this. Do we expect too much? It appeared that many of the nurses during this time had very little or no understanding of stomas.

Communication and continuity of information including the treatment/ care plan from one nurse to another or even between doctors and surgeons as well as shift changeovers was extremely inconsistent and contradicting. It doesn’t provide confidence to patients, you start to lose faith in the people caring for you, how and why do you get conflicting answers? There seemed to be control in the ward only when the matron was on duty, or one particular sister.

Mum finally had surgery (laparotomy peritoneal biopsy) 8 days after admittance unfortunately without a successful outcome (recurrent ovarian carcinoma/ metastatic adenocarcinoma). The surgeon explained to Mum there was nothing they could do unfortunately about the partial obstruction she has in her small intestine as there was too much tumour in the abdomen, they said perhaps the oncologist could suggest something. We were not offered any support straight after the surgeon had spoken to Mum, my sister and I. Surely after hearing such devastating information you would expect to have some degree of support from the hospital? It was only when my sister and I made an appointment to personally visit Mum’s oncologist at the Spire the following day so we could speak to someone face to face to understand what was happening. So for 24 hours after surgery you can only imagine what worry and heartbreak we would all be feeling as a family. The palliative care nurse at The Spire spoke to us and kindly advised us what we needed to do in order to receive the support we greatly needed at The General Hospital. On returning to the General, I demanded we see the palliative care team immediately. (Charlotte and Gabby the Macmillan nurses arrived Wednesday afternoon, and they were absolutely amazing, Angels, they helped us get in touch with Loros and get mum on the waiting list)

A couple of days after her operation a satff member walked past my mum’s bed and said something like ‘oh I hear the operation wasn’t a success yesterday? ! ! ’. Seriously? How so very thoughtful of a staff member to say this to a patient, but to a patient with terminal cancer?

Staff were to remove the fluid line away, as well as the TPN and pain relief, less than 24 hours after having her laparotomy (large incision into abdomen). Only when Mum had text my older sister to let her know the pain relief had been removed, and my sister contacting the ward and asking to speak to someone regarding pain management for her did the specific Pain Management Nurses appear. The Pain Management Nurses were wonderful and stabilised Mum’s pain quite quickly showing empathy and compassion, and were also surprised at the decision to remove everything so soon. Was Mum already now labelled “code zero” following this op?

The same day, a Ward Nurse handled Mum very heavy handed, showing very little consideration for what Mum has just been through or even what she will be going through no doubt in the future. We thought the nurse's attitude was despicable and thy showed no empathy at all. Mum said they are like a bully. It made my mum very distressed and worried about any future contact she may have with this nurse on her remaining stay on the ward. This is not what I want to have my mind when I go to bed at night.

One nurse could not tell us how much water mum should be drinking, they said just sips. How often can she sip, how much is a sip? They had no idea, again giving uncertainty of what she should be drinking.

A senior member of staff argued with Mum that she had finished her antibiotics for a water infection she had, Mum knew she had missed 4 doses and still needed to have 4 to finish the course. This staff member was adamant there were no pills left in the box.

The Macmillan nurse confirmed that my mother was correct after looking at her medication charts. They then surprisingly found the 4 antibiotics in Mum’s drug cabinet next to the bed.

During one handover a senior member of staff then explained to the nurses taking over for the night shift that Mum could not have the paracetamol intravenously due to heart and blood pressure medication’ My mum knows she is not on any such medication and questioned this, and only when my mum quizzed this did they then realise they were talking about the wrong patient! The handover is exchanging important information about patients, how can you get this wrong? Especially in front of a patient, fortunately mum knows exactly what medication she is on.

On a different handover, Mum heard the Nurse handing over to the night shift, answer another nurse when asked about Mums operation ‘… open close’, meaning nothing was done during the operation, too bad. My mum heard this ‘medical lingo’ comment, thank you for reminder that she is still full of cancer.

On another occasion I have found someone else’s medication charts at the end of Mum’s bed. The medication charts belonged to the elderly lady next to Mum. Furthermore regarding medication, many nurses were unaware that stoma patients could not take (plastic coated) pills orally due to the plastic coating not dissolving in the ileostomy bag and can cause a blockage. Nurses were still offering these pills to mum to take, fortunately mum is quite on top of what she can and can’t swallow. So to overcome this the pills are split open and put into a yoghurt to eat. Nurses were breaking the pills with their hands without gloves, is this hygienic?

One Nurse also attached a saline drip on to a stand, a separate stand to what Mum already had for the ‘syringe/pain driver’. Choosing to use a second stand, consequently Mum needing to drag two stands to the toilet. Surely common sense would tell you to use the same saline drip stand?

This Nurse had also not fitted the saline bag correctly and the saline fluid was slowly leaking on the floor next to Mum’s bed, my Niece noticed this and asked them, who responded that some one must have tampered with it. A nurse would accuse a family member of tampering with a saline bag, knowing full well the importance of mum having fluids at this stage? Again, the poor attitude is thrown in my mums face.

I also found medication on the floor (a pill) I assume it was the elderly lady next to Mum on the ward, I thought nurses were supposed to watch a patient actually take the medication?

My Mum’s drug cabinet was left unlocked, the cupboard door left wide open for 30 mins. As well as the drug trolley being left unattended at the end of the bed with the door wide open for long periods of time.

One nurse would record the fluids in and out, another would say don’t bother, again is this ‘code zero’ talking?

The elderly lady next to Mum was left on the commode for at least 30 minutes during one night and was forgotten about. It was only when another nurse reminded this patient's nurse that she was still on the commode. Mum heard this and noted the time.

The lady opposite Mum fell in the bathroom and waited lying on the floor for 30 minutes before a cleaner found her, who then said they needed to go down to another ward to get a bucket and mop, ‘can you get a nurse? ’ the cleaner asked. This lady has also been violently vomiting for days and nurses have just walked past her and ignored her, not even pulling the curtain around her for privacy and dignity.

The lady next to my mum, an elderly lady who doesn’t communicate too well, (dementia) hardly ate or drank because the nurses did not assist with helping her. On many occasions I witnessed hot drinks and hot meals being left on her table. She not want to be a nuisance and insisted she was ok. Why didnt the nurses go that one step further and encourage her to eat or drink? They left the hospital in a gown and a blanket with no dignity at all, I guess this was satisfactory to a respectable elderly lady who doesn’t want to cause a fuss.

I will never forget “code zero” for the rest of my life. I thought nurses would show respect towards patients, I would have thought they would have given MORE empathy and care to a terminally ill patient? The sister in charge told me they do not use any sort of code on ward 22. I am not stupid, code zero denotes “unnecessary health care use”. Using ‘code’ conceals transparency, adding insult to injury especially when heard by a patient. This secret language is thought to be indecipherable to outsiders, a language that doctors/ nurses say to each other to convey what is otherwise unsayable, especially to the patient, not necessary the truth but rather what they do not have the guts to say to the patient.

I just wonder how long Mum was labelled a ‘code zero’, was it immediately after the op, who makes this decision I wonder? I also wonder what physical state she would be in if she didn’t have her daughters to keep an eye on her and standing up to these nurses and questioning what they are doing and why they are doing it. We have witnessed errors, neglect and such rude staff so many times during her stay. Maybe Mum would be a lot stronger physically if she hadn’t been labelled ‘code zero’. I do know if all the nurses would have treated her with dignity and love, she would be in a better place mentally. Mum has terminal cancer, the family are all aware of this, we are under no illusion on what the outcome is, it is late stage ovarian cancer, the ‘silent killer’. But ironically, I will not be silent on how my mum was treated in Ward 22, I know that ovarian cancer will take my mum, not today, not tomorrow but one day soon it will. If this story will change anything at all, even it makes one person aware to keep an eye out for a patient on this ward, then I have done my job as a decent human being. One thing is being labelled ‘code zero’ in a medical lingo world between medical staff but to be dying in a hospital bed and hear the words ‘oh this lady is code zero’ is something else and it makes me wonder where the health care system is heading?

Maybe this will go nowhere, maybe it will. I know it is too late to change anything for Mum, no matter how many ‘Note to the Matron’ cards I write or the times I have spoken to the matron or Sister in Charge, but if I can change something for at least one lady in a similar situation to my Mum then it is worth every second I have spent writing to you.

Following the unsuccessful operation we got in touch with the Macmillan Nurses, this is when we did get hope again. We were listened to and received the support and guidance we so desperately needed. Within minutes of having the Macmillan Nurses on board Mum was given fluids, her pain was managed correctly and arranged for Mum who has now been transferred to Loros as a transition to coming home as soon as possible. Why did this journey have to go to such a dark and upsetting place, it really didn’t have to be this bad, did it?

Thank you for your time in reading this, I do appreciate it.