"My mums journey through GRI prior to her death"

We as a family feel we need to tell our story of the care and attention my mum received between February and April 2017 throughout various wards in Glasgow Royal Infirmary.

There were a couple of examples of exemplary care and a few areas of concern.

I am amazed that my mum, a frail 81 year old lady with at least one long term condition, had 3 admissions to hospital in a short space of time and nobody at any stage addressed key issues around her support at home which inevitably was being provided by an already stressed and burnt out family. In this current climate of problematic patient flow and care in the community, Anticipatory Care planning was never addressed.

My mum, was a very much loved 81 year old mum, granny and great granny. She had multiple conditions including metastatic Crohns disease, Chronic Obstructive Airways Disease (COPD) for which she required domiciliary oxygen. She received infusions at 6 weekly intervals at the Ambulatory Care unit, where she was treated with the utmost dignity and respect on every visit. Due to these infusions she was susceptible to infections which inevitably resulted in hospital admissions. To make matters worse for her she was hard of hearing and recently had lost most of her eye sight, which caused her much distress.

In previous years she had many hospital admissions with sepsis, however I would like to discuss her care from February this year.

February 2017

My mum was admitted to Glasgow Royal infirmary following a call to her GP with breathlessness and a productive cough. She was admitted to ward 21. Her bloods did not merit IV antibiotics and she was commenced on an oral antibiotic and made good progress. The staff kept us and my mum up to date with her progress at visiting time and we never needed to seek anyone out. We were told that she was responding to treatment and would get home Thursday or Friday of that week. A junior doctor told me on the afternoon on the Thursday that her bloods has started to rise therefore they wanted to keep her in and ensure that her bloods didn’t get worse. I received a call at 10 am the next day to ask us all to go up as my mum’s condition had deteriorated. When we arrived at the hospital the nurse who was looking after my mum gave us an update of what was going on. We also had a conversation with a geriatrician and an HDU registrar. We were informed of the seriousness of my mum’s condition and at all times treated with the utmost dignity and respect.  The nurse and her colleagues should be commended for their caring and compassion manner that they went about their work. My mum continued to make good progress and was discharged home in early March. Prior to discharge I had asked for a Multidisciplinary meeting but was told that as this was an acute ward MDTs were not carried out unless my mum was being transferred for rehabilitation to Stobhill or Lightburn hospital. I myself, called a district nurse to ask for a hospital bed as my mums breathlessness at night was a cause for concern. I voiced that I was concerned about my mum and that I felt that an ACP would be advantageous as recurrent hospital admissions were adding no value to her life.

We as her family could see that she was deteriorating in front of us. We were concerned about her breathlessness and her general lack of energy or interest in things.

On a Monday March I called my mum’s GP surgery (Possilpark) to ask for advice really, I was concerned about her and whilst I didn’t think that there was anything acutely wrong with her apart from the fact she was now expectorating green sputum, I wanted someone to help us! My mum was now frightened at night, and looking for 24/7 care which we as a family were struggling to cover. The receptionist at the surgery knew my mum really well and offered for a GP to come out and see her. I was concerned that she would be readmitted, as she did look unwell although I wasn’t sure that this was in her best interests, however I had to agree that if a GP saw her and felt she needed a hospital assessment, who was I to argue? The GP duly attended and readmitted my mum.

My mum was admitted to ward 10 GRI. This is where most of my concerns come. There were some nurses in the ward who were not only professional but treated my mum and us with the utmost respect. However there were a couple whose lack of professionalism and compassion was a huge concern to us. As I am a nurse I was always the person who called the ward and then cascaded that information to the others, so we didn’t have multiple family members calling the ward. My mum didn’t get a bed until very late on the Monday night so we didn’t get a chance to speak to anyone to pass on all the concerns we had as a family about my mum’s condition as well as help, support at home and most importantly the things that would keep her calm, given that she was deaf, registered blind and now suffering from delirium.

The day after she was admitted, I called the ward 4 times to speak to the nurse looking after my mum so I could either relay some important information to her over the phone or agree a mutually suitable time to chat. The nurse was busy the 1st 2 times I called. on my 3rd call to the ward the clerkess gave me the name of the nurse who was looking after my mum and she was off the ward, I said for the 3rd time I would call back. When I called back the 4th time, the nurse I needed to speak to answered the phone. When I said who I was she interrupted me to say “I’m just going for my lunch” to which I replied “ Well we are all entitled to that, I wonder if I could have 5 minutes of your time later to have a chat about my mum, I will either call back or speak to you at visiting tonight? ” “Visiting tonight will be fine” she replied and hung up.

I arrived in the ward at 6. 15 just as my mum was trying to get out the bed for the toilet and the Nursing assistant was explaining to her that she couldn’t get up as she hadn’t been up on her feet and they didn’t know what she was like on her feet. I was a bit shocked that she had been in bed all day, I told her that I would show her how my mum was on her feet and I walked my mum to the toilet. My mum appeared a bit confused. She was normally self caring with her stoma, however I had to empty it for her.

On returning my mum to bed I went to seek out my mum's nurse to have a chat as I was aware that the day shift would be giving a handover at 7-7. 30. When I got to the nurses’ station there was a nurse sitting writing her notes and she didn’t lift her head. I could see that her first name and believed she was my mum's nurse. I apologised for interrupting her and introduced myself only to be told “I am writing my notes”.  I apologised again and said that I was aware that she would be giving the handover soon and I would really appreciate 5 minutes of her time, to which she repeated “Like I said I am writing my notes” A nurse who was standing behind her introduced herself and said she was night shift and she would come and give me an update when she got a handover. Relieved at the fact someone was going to listen and totally disgusted by the first nurse's manner. I thanked the nightshift nurse and walked away. On return to my mum’s bed there was a doctor at the foot of the bed, at this point my sister, my daughter and my niece were at her side also. At this stage my mum was drowsy, and when she was awake she was clearly confused. The doctor introduced herself and explained to my mum that she was starting her on medication as her potassium was high. My mum's nurse then joined us. I asked if it was calcium resonium and when she said it was I explained that her stoma was quite firm which was unusual so she would need some lactulose. (As a former experienced renal nurse I was aware that calcium resonium rids the body of potassium in the gut and as my mum appeared constipated she would need an aperient) Mum's nurse then says "I think we know what they are doing”.  I told the doctor at this stage that I had brought a sample of sputum into ED yesterday and this was before any antibiotics had been started so this would be a useful sample to have to guide the treatment to be told by mum's nurse “like I said we know what we are doing”.   I was the person in possession of some really important information and as my mum was in no fit state to share that information I was really concerned that the nurse looking after her was not prepared to listen. The only other question she asked us that night was “do you know it’s only 2 to a bed? ” The night shift nurse did come to chat and gave us a handover and she listened to what I had to say which was much appreciated.

I asked every day if I could speak to a doctor. Some of those days I was there from 11am to 7pm and didn’t get to speak to a doctor until the Friday (Mum was admitted on Monday) when I did get to speak to a doctor because I knocked on the door of the doctors room and asked to speak to him.

I voiced my concern about

• How little progress my mum was making

• The fact that 48 hours after stopping antibiotics she was readmitted. I requested that if she was being discharged a GP or DN is arranged to take bloods so we can start oral antibiotics at home if her bloods start to rise. The doctor confirmed that she would be discharged early the following week and would be on oral antibiotics for 14 days.

• I highlighted that I had brought in a sputum sample before any antibiotics were started and that’s what the antibiotic therapy should be based on.

• The fact that she is requiring more support at home

The doctor, reassured me that the sputum samples had grown nothing and therefore she would remain on the current antibiotics. He said that a DN would be arranged to take bloods 48 hrs after the course was complete. He said he would arrange an OT to assess my mum for more support at home.

Less than one hour after leaving the ward the plan had changed completely. A sputum sample had miraculously turned up and my mum was commenced on a 14 day course of IV meds. I was upset by this as I wondered if I hadn’t spoken to the doctor would anyone have looked for the sputum sample? Only when I sought out a nurse the next day did anyone speak to us about the change of plan and the extended IV course of antibiotics. Why was it always so hard to speak to anyone and why did we have to constantly hound staff for updates when my mum was clearly unwell.

My mum remained in ward 10 for another 14 days on IV. That was a difficult 2 weeks for my mum and all our family. I had a conversation with another nurse who reassured me that we would have an MDT prior to my mum being discharged as I had again voiced my concern about support at home. However when my mum was nearing discharge I was told by a Staff nurse that there would be no MDT as that only happened if there was rehab organised for Stobhill or Gartnavel. It seemed to me that there was very poor discharge planning and even worse, that there was no consistency of information from staff. My mum became acutely confused the day before her planned discharge, becoming aggressive at times, which was not my mum. When I asked what was the cause of her acute delirium? I was told that it was normal cognitive decline; I had never heard such nonsense as my mum prior to this admission was sharp as tack. We took her home on Friday the the next day. She looked awful and we were all so concerned but no one was listening to us in ward 10 so we really had no choice but to take her home.

My mum was home for just 2 weeks. In those 2 weeks we had an increased care package but not bespoke as my mum needed support at night. There were 4 of us trying to cover 7 nights a week as well as days, whilst working full time and having our own families. The social worker was trying to get us some self directed funding but that didn’t seem to be easy. To say that the following 2 weeks was difficult is an understatement. We were all literally on our knees. Despite asking for help and an ACP it didn’t happen. I had a couple of conversations with the GP over the following 2 weeks so things were obviously not good. We could see my mum deteriorate before our very eyes.

Following increased breathless and anxiety my mum was readmitted to ward 31 in April at 9pm and around 2am had a sudden collapse, we were told this was possibly due to a cardiac event. The medical staff said that she had possibly thrown off a clot which had caused a stroke as she never regained consciousness. Our mum was taken from us at 10. 25 two days later.

Although my mum was in ward 31 for a very short space of time, a young staff nurse named restored my faith in my own profession. When we arrived in the ward in the early hours after receiving the call of my mum’s deterioration, she could tell us all our names, that she had 2 granddaughters teaching in Aberdeen and the fact that Harry was the love of her life. In a 4 hour period this young nurseknew more about my mum than most of the staff in ward 10 knew in 3 weeks. We want as a family to extend our sincere gratitude to her for that. We would absolutely welcome the opportunity to tell her that face to face.

Whilst in a side room within the ward my mum was dying, surrounded by the family who loved her dearly, and who she hadn’t spend a day away from in a very long time. On a couple of occasions we were told that there was only two to a bed which caused us much anxiety. We had the opportunity to speak to a nurse on the day Mum died, she also showed us nothing but respect and apologised for some of her colleagues and from that moment on we were allowed to spend as much time as we wanted with our mum.

I know this is a very long recount of my mum’s journey. I am sure you will agree that there are a few occasions of absolute professionalism and times when my mum and we, her family were treated with the utmost respect.

1. Staff in ward 21 for their excellent care and attention

2. Night shift nurse in ward 10, intercepting when I was being dismissed by my mum's nurse

3. Young staff nurse in ward 31 who continually showed my mum and us dignity and respect throughout my mum’s whole journey in ward 31.

4. On the day my mum died, the staff nurse for taking the time to sit down with the 4 of us and listen to our concerns as well as offer all the hospitality we needed at that very difficult time.

5. All 3 admissions through ED and the assessment unit were faultless even when the staff were under tremendous stress.

There were also areas of concern that we would like you to know about. All we as a family can ask is that you pass on our thoughts to the relevant wards in order to congratulate them for the great work and to raise concerns about areas of improvement for the others. I would consider myself professional and compassionate, and would not have at any time spoke to any member of staff in a disrespectful manner, therefore would have expected that to be replicated.

1. I and some of my family were spoken to disrespectfully by my mum's nurse in ward 10 and I feel it would be useful to feed this back to her as she may not be aware of her unfortunate manner.

2. The lack of an MDT to planning the discharge of a vulnerable older adult and an already stretched family is disappointing. This should have happened in at least one of the wards.

3. The lack of communication throughout my mum’s 3 week stay in ward 10 was very frustrating for us all. It was not until the 2nd week of my mum’s stay in ward 10 did I get to speak to the SCN and that was only because I requested it.

4. I am not sure if my mum was ever seen by a consultant during her 3 week stay in ward 10. I think it is unacceptable for a member of medical staff to change a plan completely without at least a conversation with relatives, especially when there were communication issues with my mum due to her sight, hearing and possible delirium.

We as a family feel robbed of the opportunity to care for our mum in her last days of life in her own home. We weren’t asking for a lot, we only wanted someone to have the discussion around anticipatory care planning to prevent hospital admissions which added no value to her life. I wanted to be my mum’s daughter and not spend the last months of her life being a nurse and social worker.