Care Campaign for the Vulnerable is learning of the pressures faced by conscientious led Care Providers striving to offer a caring and safe environment to both service users and staff. Safety monitoring is proving to be a invaluable care assist tool - bringing a more open and transparent culture into care homes as well as saving valuable resources within the care home sector and the NHS
''My father was a carer for my mum but sadly in 2019 after a brain haemorrhage, she had to go into a care home. He visited her every day to help feed and take care of her and they were both affected by the lockdown where he was only able to see her through the window. It broke his heart in many ways to see her deteriorate without visits from her family and they died two months apart almost to the day. But now his family are traumatised with our father's care he received in hospital and resulting in him suffering unnecessary excruciating pain before he passed away in front of me.
Why was my 74-year-old Dad with an excellent quality of life waiting from 19th August 2020 until his death on 6th December in 'atrial flutter' without any procedure to restore his 'sinus rhythm'? This was four months with a heart rate of roughly 106bpm under rate control medication and with a long-standing history of cardiomyopathy which was extremely well managed with no symptoms for twenty-five years until the 'atrial flutter' began in August 2020.
The change of medications introduced changed his quality of life, lowering his blood pressure considerably so that he was suffering falls and more sleepy as opposed to his lively, strong self. He was taken to hospital many times with falls and a 'drowning' sensation and was repeatedly sent home the next day with minor changes to medication. The NHS guidance states that in emergencies a patient can be scanned with TEE and immediately cardioverted, he should not have been waiting until 23rd November for cardioversion and the 'ablation' which was initially recommended by the doctor had not even properly been discussed. I have no doubt that had this condition been treated in a more timely fashion that my father would still be here today.
On 22nd November - 26th November 2020 my Dad was admitted to hospital after a fall resulting from low blood pressure. During admission CRP peaked at 61 was 59 on the discharge note, his white blood cell count, creatinine, urea and monocytes were also out of range. I reported significant confusion on more than one occasion to nursing staff/doctors by telephone, all said they would follow up but our family didn't receive any explanation or evidence of any investigations. Why were blood abnormalities on the discharge note not investigated further/treated with antibiotics during his hospital stay before he was discharged? Why was confusion not investigated in the context of blood abnormalities? Was then, his discharge safe?
I informed Nurses that my Dad lived alone so was concerned about his safety as he was suffering from repeated falls due to the low blood pressure from the new medications started in August to treat Atrial Flutter. The medication list was very complicated and there were no doesn't boxes prepared for him. My sister-in-law also made a complaint to PALs on 1st December 2020 in the context of how unwell he was on discharge and the safety of this. No discharge note was sent home with my Dad and we didn't receive it until 2nd December as he returned to the hospital by ambulance.
His CT angiogram on 6th November 2020 showed that my Dad's heart may have been too diseased to undergo general anaesthesia for cardioversion on 23rd November, the angiogram of 24th November identified the heart was not as severely diseased as the CT Angiogram showed and therefore he would be suitable for cardioversion to treat Atrial Flutter, there was no indication from doctors that his condition was advanced or end-stage and he was discharged as normal so the family were under the impression of relatively fair news in terms of treatment. My dad's presentation on arriving home was anything but, he was extremely fatigued and drowsy, confused, constipated and barely eating/drinking and also he had severe feelings of 'drowning' when laying down and very bad back pain. How were these symptoms missed at discharge?
As he had no discharge note there was no background as to what could be causing this other than fatigue. We were unaware of any issues with his kidneys in particular or infection markers and sustained a fall before leaving the hospital. He wasn't to resume Metformin until 27th November. He did not remember as was too unwell to register this. The ambulance team took him back to the hospital on 2nd December and called this a 'failed discharge' in their discussions. Was my dad followed up by the renal team during that admission due to his AKI which was noted on the discharge note? Why was he given an angiogram so soon after AKI as the contrast dye could have exacerbated this?
On 30th November a locum doctor visited my Dad's home. I was so concerned about his symptoms, particularly drowsiness, I telephoned the hospital's heart failure nurse who recommended a review by the GP. A locum doctor visited Dad's home that evening and I informed him that he seemed to be excessively drowsy and some purple discolouration/swelling on hand. The doctor told the family he had sustained a fall in the hospital and he checked his hand to make sure this was not broken- there were no other observations taken. I told the doctor of concerns of an infection as the hand seemed warm to touch and he was drowsy, but we were told he had been through a lot in the hospital so to give it a few days and to call back if his symptoms worsened. On the 2nd of December, my dad was readmitted back to the hospital.
My Dad was very drowsy and blood pressure extremely low and his voice was hoarse. I telephoned an appointment with GP and he looked at the discharge note on the system and sent for an ambulance as the infection markers on discharge suggested infection/sepsis. The ambulance crew noted very low blood pressure and also abdomen was distended. What were the blood results taken in A&E on 2nd December? Was there the presence of infection/kidney failure and if so why was treatment for this not commenced?
My Dad's Oxygen Saturation was dropping in A&E which seemed to be causing brief losses of consciousness, he was put on Oxygen in A&E for this. Despite my witnessing a continuation of the saturation dropping and correlating loss of consciousness on all visits to the ward Oxygen was not administered until 5th December. If his Heart Failure was worsening why wasn’t Oxygen administered as a general standard of care? Dad was admitted to the Cardiology Ward and placed on Frusemide drip and limited liquids (to address the liquid on lungs but not considering any other issues such as drowsiness, confusion, possible sepsis or the distended abdomen/constipation previously reported.
Was it the correct decision to place him on a Frusemide drip and limited liquids in light of the previous AKI and potential infection present? On the 3rd December-Reviewed by the consultant, plan for TEE and emergency Cardioversion to follow (This should have been the action taken on one of his numerous trips to A&E from Sept-Dec)
I was allowed a brief 10-minute visit and reported to nursing staff that my father seemed extremely confused, totally unlike himself and paranoid to which they agreed and said would be followed up with blood tests and I repeatedly called the hospital for updates that evening but was told they were still waiting for test results and would take a urine sample. On the 4th of December, I was thankfully allowed a brief visit after asking to speak to Nurse in charge about concerns around my Dad's confusion via telephone. The Junior Doctor advised some evidence of infection but further investigation needed before starting the antibiotics. After being taken off the frusemide drip on 3rd/4th December he was then put on Nil by mouth for six hours and deemed fit for general anaesthesia for the TEE. At the time I questioned this approach as he had been unlimited liquids since 2nd December so would this not cause dehydration? I noticed immediately during the visit on 4th that my Dad was hallucinating he was also very thirsty.
How did staff and the anaesthesiologist miss his confusion and hallucinations /deem him fit to be put under anaesthesia imminently? When I reported hallucinations it was agreed to halt the TEE procedure and take him for a CT scan to check for brain injury from a previous fall on discharge from 26th November, if I had not been allowed in the TEE would not have been halted.
Safeguarding issue resulting in two falls. I was asked to leave on 4th December by nurses due to Covid restrictions after roughly an hour, I felt extremely uncomfortable leaving and made the nurses aware of this as my Dad's mental state was altered and hallucinating, and informed the nurses he needed to be monitored closely as he was mobile but very confused, at risk of falls and it felt like a safeguarding issue. I was still not allowed to stay and pressurised to leave.
The night of 4th and morning of 5th December, my Dad sustained a fall and was found on the floor with his head in a chair, how was this allowed to happen? Why were the family not notified at the time? This was his second fall under the hospital's care and the first being just before discharge on 26th November when again I had reported confusion during that stay. A call from a doctor early evening of 4th December to report CT scan showed no evidence of brain injury but that 'they were not entirely sure what was going on and still waiting for test results. I was informed he was stable in terms of heart and I asked if they had put him on Oxygen as I noticed him losing consciousness when oxygen dropped but the doctor said he didn't think he needed it. On the 5th of December, I telephoned the hospital and was told my Dad had a very unsettled night; I was not informed of the fall which happened overnight but only of the distress caused by his breathlessness.
I arrived at the hospital whilst my Dad's doctor and another doctor seemed to still be examining him. One doctor suggested a CT scan be performed of his abdomen as it seemed to be very sore- this did not happen. The doctor started explaining by the bedside that he was critically ill' and to inform his family. I was asked by the doctor to walk away from the bed as did not want my father to hear this conversation. The conversation was five minutes at most, very rushed we were not taken into a room to be sensitively updated as to what was exactly going on. His decline was attributed to heart failure and there was no mention of renal function decline to which the doctor has since explained to me in the context of low urine output, however, it seems my Dad consumed barely any liquids since admission with the limit on liquids and 'nil by mouth', could he have been dehydrated? There was a mention of sepsis which was now being treated with antibiotics, three days after admission. Why were antibiotics and IV liquids only started on 5th December when he was critically ill’?
As there was barely any explanation as to his decline, I was very confused as an angiogram the week before classified the heart failure as moderate by the doctor. There was no formal discussion regarding DNR which explicitly clarified the hospital's decision regarding this to the family, my dad did not agree to DNR when it was discussed in A&E and the family certainly did not consent to this. At the point of being classified critically ill with heart failure, there should have been the end of life medication prescribed, there was no discussion regarding this or keeping him comfortable, or what we could expect to happen over the next hours/days.
Overnight he was very restless and had two 'drownings' like attacks where oxygen was low and he was very panicky and agitated, oxygen was administered and I comforted him, he said he was scared he was dying and very anxious and it hurt to breathe. Blood pressure was dropping extremely low and no urine output. On one attempt to urinate during the evening of 5th December a female nurse made a crude remark about my father's genitals in front of me, adding to the indignity of the experience, I do not record her name but I was appalled by her behaviour.
On the 6th December blood pressure medication (Bisoprolol) was still given in the morning despite extremely low blood pressure overnight. At approximately 9.20 am my Dad developed agonising lower abdominal pain which he rated a ten on the pain scale, the pain was so intense he could not keep still and was screaming out. I immediately alerted nurses but it took roughly 40mins/1hour for any pain relief to be administered - firstly paracetamol and then finally a doctor shouted for morphine but before this could be written up my Dad died after screaming in pain 'I’ve had enough. He finally arrested unsurprisingly, with the stress of the intense pain he was experiencing and as he was already tachycardic with an average bpm of 106 for the last few months. As he arrested, at least four medical professionals were in the room and watched without intervention as we assume that they had made a DNR decision without communicating this to the family so I tried to revive him, an extremely harrowing experience.
If it had been decided that my Dad was critical, then end of life medication should have been prescribed to keep him comfortable and dignified at his end. As a family, we find this unforgivable that he died in such prolonged intense pain and anxiety. There should also have been clear communication around DNR which there was not. As a family, we are in shock and agony at the loss of our father who was so full of life only months ago. I am still very unwell as a result of his traumatic passing. Nobody should die in agonising pain in hospital in this day and age, my father suffered for nearly an hour whilst I begged for relief for him first from nurses and then doctors, I didn't get to hold him and say goodbye in his final moments, instead of my husband and I struggled to pick him up off the floor and keep him in bed as he writhed in pain as we waited for pain medication to be written up and administered.
As I left the hospital the consultant involved said she "was very pleased that I got to be with my father as he passed" A very insensitive comment as the image of what he suffered in his final moments tortures me daily. Secondly, if and when a DNR is placed family should be notified and consulted, we had no idea that this had happened and would have contested this, the communication between the doctors in this hospital and us as a family was abysmal, I still don't understand what took my father from us as nobody took the time to explain fully and I still haven't received feedback from my complaint to the hospital. This man was my hero and best friend and he simply deserved better, he was disposable to the NHS but this has broken my heart and us as a family."
Care Campaign for the Vulnerable is supporting families reporting a lack of communication with families concerning DNR (Do Not Attempt Resuscitation ) and poor care after admitted to hospital during the Covid pandemic. If interested in this case study or if you have experienced similar issues, please contact us in strict confidence email@example.com
Your kind donation will help CCFTV support even more families in care.
If you would prefer to send a bank transfer, please contact us and we can provide all the necessary bank details
"The evidence from Providers who have installed CCTV seems to me to merit careful attention and to be quite persuasive"
Just some of the Care Providers who support our CCTV Safety Monitoring in Care Homes
Download their 'Safety Monitoring In Communal Areas in Care Homes' document
Chiltern and South Bucks District Council SAFE PLACE SCHEME has called on Care Campaign for the Vulnerable to add our support to the initiative for those who are vulnerable in the community to get help if out and about and feeling scared , lost or confused.Read more
View our supporters