What happened to my Mother is in two parts…
The first hospital admission
I was away on a one week course and my Mother was complaining of feeling very unwell. My sister took her to hospital. The hospital did some tests. My Mother was dyslexic. Sometimes she misheard what was said or got syllables of words muddled. The hospital did a dementia test. On some questions Mum answered then corrected herself. The doctor said he had to take the first answer or if she took too long answering it was noted she wasn’t able to recall the information. My sister explained but the doctor insisted that was the way the test had to be done and concluded Mother had dementia.
Without divulging personal details about other members of my family, something had been happening for a few years. Mum had been helping but had been subjected to severe stress. She often telephoned me sounding extremely worried and sometimes crying. [I lived quite a long way from my Mother and sister, a journey of about two hours or more. I used to visit once a week to take Mum out. We chatted a lot and I never once thought she had dementia].
The hospital decided to admit Mum for further tests and to give my sister respite.
Mum had been in hospital about one to two days before I returned from my course and visited her. She was in a side room with an ensuite toilet and shower. I noticed one side of the bed was very crowded with an over the bed table stand, a large chair, a bedside table, and an IV stand. Mum seemed a bit shaken and told me she’d had a fall, over the legs of the badly placed IV stand, and cut her arm. She’d been trying to get to the toilet.
I visited the hospital about three times a week, sometimes four. Mum had been moved to a ward. I noticed nurses feeding Mum and when she wanted to go to the toilet the nurses brought a bedpan. When I visited Mum liked to spend the time chatting, the nurses were always busy, and one in particular was always very attentive and helpful with Mum. It didn’t cross my mind to wonder why they were feeding her when she had always fed herself. It just seemed like they were making a fuss of her.
One day I visited and Mum started saying strange things. I then thought maybe she does have dementia or maybe she had developed a mental illness due to all the stress. Mum had also been diagnosed with Parkinson’s. I spoke to a doctor on the ward. I said Mum had been through an enormous amount of ongoing stress in the last few years and I wondered if she had PTSD. I noted sometimes Mum’s right hand would shake, but it was always when she was very upset or stressed about something. Sometimes she’d speak about whatever was upsetting her and use her right hand a lot to gesticulate. I also asked the doctor if this was definitely Parkinson’s. The doctor basically just stood and smiled (a bit like ‘Are you trying to tell me my job?). He just made a slight shrug gesture when I mentioned PTSD. He said Parkinson’s is not a diagnosis. It’s a set of symptoms. I didn’t understand that. My son visited that day or the next and also noticed Mum was acting unusually strange. He looked up the medication Mum was on and found it caused hallucinations. My son insisted Mum be taken off the medication. At that time we didn’t have Power of Attorney so I was surprised when the doctor stopped the medication. Parkinson’s was never mentioned again, and it wasn’t on her death certificate when she died two years later.
It was the hospital’s decision to keep Mum in hospital for a longer stay. However, at one point I visited and a social worker was there saying if Mum didn’t leave the hospital they would have to serve her with an eviction notice. [Mum was 88 at the time]. My sister and two young sons had moved to Mum’s following the separation from her husband. The council refused to add my sister to the tenancy. They also wouldn’t help her with accommodation because they said she had made herself ‘voluntarily homeless by leaving her marital home’ [even though the house was just in her husband’s name and he told her to get out].
The social worker and hospital staff said if Mum agreed to go into a care home they would see to it that my sister and nephews could stay in the house. Otherwise my sister was saying she could no longer cope with all the stress and if Mum returned home she would leave the house; however, because Mum had become used to people being around her she was nervous of going back to an empty house. I said if she went back they would send in care staff and in the meantime I could find out if there was the possibility of a transfer to an accommodation in the next road to my flat.
However, Mum decided to go to the adjoining care home for a trial period. She was worried my sister and the grandchildren would be made homeless. Over the next few days the hospital assured Mum if she stayed in the care home they would see to it my sister wasn’t evicted.
On the day Mum was discharged from hospital I was shocked to see she could hardly move when they got her out of bed. I noticed her legs looked very thin and wasted. When Mother was admitted she could bathe, dress, feed and toilet herself. She could walk around the house, even climb the stairs, and she could walk in the street with the help of holding someone’s arm for stability; but, now, Mum had to be discharged in a wheelchair, and now she had no pillows to support her, she just slumped forward in the chair, unable to lift her back and head.
A couple of days before this Mum had told me she was worried as she hadn’t been allowed out of bed even to go to the toilet. It was because of the fall she’d had on admission. A nurse had been feeding her all meals and Mum could no longer easily or quickly move her hand to her mouth.
I phoned the hospital asking to speak to the head nurse or ward sister. I explained Mum was worried about lack of exercise. The nurse said: ‘The physiotherapist is on the ward now. Would you like to speak with her directly?”….. I asked the physiotherapist why Mum had received no physiotherapy. She said: “We can’t force people”. I said ‘But Mum wants physiotherapy why would you have to force her?” She said: “When we got your Mum out of bed she asked to be put back to bed again.” I replied: ” Mum told me you got her out of bed and left her sitting in the bedside chair for ages until her back hurt her. That’s why she asked to get back into bed, for the pillow support, and because she was just left to sit there with no physiotherapy, and besides, even if she did refuse physiotherapy [which she didn’t], it was your job to explain the consequences of not having any exercise for a long period of time. You can’t force people but you can inform and encourage them.”
When Mum left hospital she was very weak and badly deconditioned. I complained and then took the matter to the PHSO. The hospital refused to take responsibility saying it was now the responsibility of the local health services, via the GP attached to the care home. The care home said there was a very long waiting list; they kept informing the GP but not much happened… It took months before two physiotherapists visited Mum for only about three sessions in the care home. There had been so much delay that three or four sessions just did nothing to strengthen Mum’s back and help the dropped head she developed. I asked to see the GP, on Mum’s behalf. I told him the physiotherapy was nowhere near enough to correct Mum’s issues. He said: ‘ I see. So you’re not happy with the physiotherapists?” I said I wasn’t. He said: “You’re a psychotherapist aren’t you? Do you get on with your clients and your colleagues?”… “You have a sister don’t you? Do you get on with her?”…. ‘You’re married aren’t you? Do you get on with your husband?”… So you don’t think the physiotherapists are doing their job well… Well I do. Now can you leave I have patients to see”…. A couple of weeks later I made an appointment to see the same doctor. I was left waiting for ages. I asked the receptionist why I hadn’t been called and she said the doctor was refusing to see me. I should really have reported him to the GMC but I had too many other issues to see to.
Meanwhile the local council evicted my sister and nephews. When I contacted the hospital saying they had promised my sister would not be evicted as they would help they replied they had helped because they had given my sister the telephone number of Women’s Trust [an organization which helps abused and homeless women]… I informed the local council my sister had PTSD symptoms due to all the stressful situations she and Mum had encountered, but they ignored it. Instead they sent my sister a letter saying if she did not vacate the house by a certain date then bailiffs would evict her, or she would get fined about £200 to £300 and taken to court. This was an enormous amount of stress for someone with PTSD… My sister must have panicked as she called in a house clearance company. They took everything, even some of my things Mum had stored for me [as my flat is small with little storage]; then she accepted the two rooms in the new house her ex-husband had bought. After two years the PHSO told me they were not upholding my complaint as the hospital medical records stated Mum had twelve sessions of physiotherapy!! The only thing they upheld against the hospital was the two years they took to answer simple questions. They advised the hospital to look into that in case of future cases.
Interim
There were many issues at the care home. At one point Mum said to me: “I have made a mistake. I gave up my lovely little house. I don’t know what I was thinking. I want to go back there”. I had to make an excuse. I hadn’t the heart to tell her my sister and Mum’s Grandsons had been evicted. I hadn’t the heart to tell her my sister had accepted two rooms in her ex-husband’s house; or that the house had been taken back by the council. It was 2016 and Mum had lived in the house since about 1980.
Initially the care home manager told me Mum could have her meals in the dining room or in her room. Mum was able to take the daily Multi Vitamin and Mineral supplement she always liked to take; and she was also allowed a homeopathic remedy against influenza that she liked to take every year.
However, a few months or so before Mum’s second main hospitalisation Mum told me the staff no longer allowed her the vitamins. They also refused to allow her to have an Optibac Probiotics for those who have been on antibiotics. When I asked the carer’s manager about this she told me they were no longer allowed to give Mum anything that was not prescribed by the doctors, even if it was something Mum always used to take and even if it was something Mum still wanted to take.
I visited one of the GP’s at the attached NHS practice. The doctor told me Mum didn’t need the vitamins and minerals or the probiotic as it was best done with food and nutrition. I asked: “What nutrition? Every time I visit the food looks terrible and they are given a lot of fast burning carbohydrates and sugars” He just smiled in a patronising manner and said that was what they considered best for Mum.
It is worth noting that when Mum was first admitted to the care home she was in the section upstairs. This area was for those with dementia. It was clean but basic and austere. However, it was soon decided Mum did not show signs of dementia and she was moved downstairs. The only good thing is Mum had a pleasant and well furnished room in this area.
The second hospital admission
Mum was in the care home for two years… Around the start of September she complained of feeling very unwell. The care home senior carer said she had spoken to the GP but he said nothing was wrong with Mum. When I visited the next time Mum told me she felt worse and had pains around her sides and near her diaphragm. I insisted she was examined. They arranged for Mum to go to hospital. After examining Mum overnight the hospital sent Mum back saying there was nothing wrong with her. The next time I visited Mum was again complaining about feeling very ill. The care home called paramedics. They persuaded Mum to go to the hospital again. The hospital put Mum on an A&E ward. Again they said Mum was well enough to be discharged. However, my sister phoned me to say she was very concerned about Mum’s breathing which sounded rasping. She approached another A & E doctor and he examined Mum. He said on no account could Mum be discharged as she had pneumonia.
Mum was kept on the A&E ward and cured; however, I noticed staff would put Mum’s food and drinks on the side tray [where Mum couldn’t reach, or no longer feed herself]… After it had been there a while they would come and remove it. I said Mum wasn’t able to get to the food and drinks unless someone was there to feed her. One nurse just shrugged and said: “We don’t have the time”. I said: “What’s the point of leaving it on the table then taking it away saying she didn’t want it. It’s not that she doesn’t want it. She cannot feed herself”. Family started a rota so that most meal times we could go in and help to feed and hydrate Mum.
Mum was moved to a ward on the third floor. As soon as she was there my sister and I were called into a doctor’s office. She said Mum was at the end of her life and ‘actively dying’ My sister and I were shocked. We had seen no signs of this. The doctor said sometimes a situation can appear very changeable and people who are dying often get sudden bouts of energy before they pass. Then she started talking about a DNR/CPR. She said we had a choice. However, she explained issues with resuscitation. We were told in a lady of Mum’s age cardio pulmonary resuscitation can cause severe bruising, internal bleeding, a broken sternum, broken ribs, and severe pain. Then we were asked to make a choice with this very biased information. No sooner than we agreed to the DNR [Do not resuscitate] than we felt hounded to place Mum on end of life ‘care’…. Initially we believed Mum must be dying if a qualified doctor told us so.
We asked for Mum not to be moved to the unit at the rear of the hospital, for end of life cases. We requested she be transferred to a good hospice we had heard about. However, a day later someone from the hospital phoned to say Mum had worsened and she was on the ward we had asked her not to be moved to. We were told she was too ill to be moved anywhere. I got very annoyed as we had specifically asked for her not to be put on that ward. Also, how was it she was too ill to be moved anywhere but it had been okay for them to move her down three flights, and through the hospital grounds to the very rear, and into a new unit? I was told [actually almost shouted at] that there was “No way!!” Mum could go to a hospice. That would have to go through the Clinical Commissioning Group instead of Continuing Nursing Care and it would be a lot of paperwork for the hospital and take much longer; and, furthermore, it was very unlikely the CCG would fund a transfer to a hospice.
After that things didn’t seem to add up. Some days I went into the hospital and Mum seemed vague and sleepy… One day she made little sense… I noticed her right earlobe was bent upwards towards the middle of her ear and it wouldn’t easily go back into place. There was a deep crease across the lobe. I realised Mum was severely dehydrated and I offered her some mango juice through a straw. She drank the whole lot and kept saying ‘more’, ‘more’…. I gave her a second carton and she drank that too…. After that she was speaking normally, making sense and more alert. I was told Mum wouldn’t eat but on another occasion I sat and fed her and she ate almost the whole plate of food. Again, after food and hydration, Mum became more alert and interactive.
We soon disputed the end of life. The doctors said they monitored patients every day for improvement or deterioration, and adjusted their decisions and the treatment accordingly. They agreed she had improved. However, during this time we had been called to several meetings, all with a very strong bias towards putting Mum on end of life “care”.
There was a final meeting. It was on a Wednesday. The registrar in charge of Mum’s treatment called us to a meeting. There were four members of Mum’s family, my sister, my two sons and me. The doctor entered the room with a beaming smile. He said: “Good news! Mum is fit for discharge!” I said: “What about the infection ?” He replied: “It’s minimal… Negligible” …”She’s in good shape”… So if you agree she needs no further treatment we can fast track discharge her to any care home or hospice of your choice. So of course we agreed. We just wanted to get Mum out of the hospital; and Mum had actually said to me one evening “[name redacted], please get me out of here”. I said we’d like Mum to go to a hospice I’d found that had a rehabilitation unit.
We all went home very pleased and on the Friday I went to the hospital. Just as I entered the ward I had a call. It was the same person who had phoned me previously. This time she spoke in a more polite tone. She said she had some bad news. Mum had deteriorated and could not be moved anywhere. She said they were looking for a suitable bed for her and later that day she would be moved. The person didn’t realise I was already at the hospital and already about to enter the ward.
When I went into the ward I looked to the right. Mum used to be in the nearest bed but the bed was empty. It had been stripped, and all her things were gone. I asked the nurse where Mum was. She looked startled, looked at Mum’s bed, looked around the small ward, and said: “Oh! I don’t know! I’ll find out” The nurse came back to say Mum was along the corridor and in a side room. When I entered the side room Mum was lying with her eyes closed. I said; “Mum, can you hear me? Do you know I’m here?” Mum raised her eyebrows and flickered her eyelids. I wondered if it was a coincidence so I waited a while and the same thing happened… I asked again, the same. She had no hydration, no IV fluid….
When my sons came in my younger son asked for Mum’s blood pressure to be taken. The nurse took it… Later the registrar called by and when my son mentioned the blood pressure the registrar got very annoyed. He said the nurse should not be taking blood pressure or taking any observations.
Unfortunately I didn’t know much about the Liverpool Care Plan then, but in retrospect I know that is what Mum was on. My sister stayed the night. My son stayed with Mum on the Saturday night. I stayed on the Sunday night.
During the night I heard Mum’s breathing become very strong. Initially I thought she was coming out of the semi-comatose state. However, twice when the nurses came in to check on Mum I asked about her breathing. They assured me there was nothing wrong. They said it was only that she was on her back and breathing through her nose rather than through her mouth.
Having been reassured I must have fallen into a deep sleep. The next morning I got up and dressed. I went over to Mum and said I was just going to the kitchen along the corridor to get a hot drink. As I was leaning over talking to her I saw a little frothy liquid at the left side of her mouth. I spoke to Mum saying I was going to wipe her mouth. I wiped her mouth and as I was going to leave I looked back and saw some more froth. I spoke to Mum again as I wiped her mouth. This time as I wiped her mouth Mum’s head suddenly fell to her left side, all the colour drained from her face until her complexion looked pale and waxy. I realised she had died. I went to get a nurse. There were three nurses sitting at a long desk. I said: “My Mother has just died” Without looking up at me the one sitting in the middle said (casually): “Oh has she. The doctor will be along soon to confirm it” and continued writing. The registrar who came along to verify the death. I sat the other side of the screen, tears streaming down my face… The registrar appeared. I stood up thinking he’d say something… Do I want to ask any questions.. That he was sorry for my loss… Something… Instead he brushed past me with a little smirk on his face. My family and I saw the registrar twice more after that, on both occasions he walked past ignoring us all. A nurse came into the room saying they had to move Mum to the mortuary and get the room cleared. She told us to clear Mum’s things. We said we hadn’t expected her to die and had nothing to take the things in. She returned with two black bin liners and said; “There you are. You can put them in these.” My sons said they had arrived by public transport and we couldn’t take the things right then. The nurse said: “I can lock them in the nurses office overnight but you’ll have to collect them tomorrow morning”. We were treated so badly that one of my son’s got annoyed. He grabbed the bags and said: “We’ll find a way. We’ll take the bags. We don’t want to step foot in this place again!”…. and we left. As we were about to leave the building I saw a male nurse who had been particularly helpful to Mum. I opened the door to the small work room he was in and thanked him. As I was about to leave the building someone tapped my arm. It was another nurse who had been very professional and helpful. She said: “I am sorry for what happened to your Mum”… That phrase stuck with me; not “I am sorry for your loss” but… “… for what happened…”
Some time later I requested the medical records… Still later I managed to see a TEP form, [Treatment Escalation Plan]. I hadn’t been able to look through all the medical records at once as I found it distressing. The first question on the TEP form was ‘Do you expect this patient to die within the year?” The answer was they did not.
So why then were so many meetings held with a strong bias towards putting Mum on DNR and End of Life “care”? There was a PHSO enquiry into Mum’s death. It took five years. The Ombudsman said the hospital acted inappropriately (for the second time) but taking too long to respond to questions and supply information. The Ombudsman recommended the hospital pay me £250 for my ‘Time and Inconvenience” which I did not accept.
The Ombudsman found nothing wrong even though in the medical notes there was an entirely forged A4 page of medical notes where the registrar claimed the family had asked for Mum to be put on end of life, and he claimed two doctors were present. The only medical staff present was the registrar. The PHSO accepted the document even though I had alerted them to the forgery. The GMC said they could not comment on what we (four of us) think we heard, or how we interpreted it. The PHSO found no fault with the registrar or the hospital.
The death certificate the doctor who put Mum on end of life stated Mum died of aspirate pneumonia, dementia and frailty.
I requested a coroner. In retrospect I wish I had booked an independent private coroner. The coroner advised me Mum died not of a heart attack but of a changed heart rhythm. I have been advised by medical contacts that this is likely to have been caused by the sudden withdrawal of all long-term medications, even those dangerous to abruptly stop, as well as the end of life drugs, Midazolam and Morphine, added to this Mum would have been severely dehydrated. This, and her condition, would have caused the pharmaceutical drugs to have a greater effect on the body, and they would not have been cleared from the body as they would in a person whose kidneys were working at an optimal level.
The coroner decided the new cause of death was a changed heart rhythm, dementia (even though the Circle of Willis was clear), and frailty (Yes, someone would be frail if they hadn’t been properly fed and hydrated for ages). The part I object to is he wrote every condition he detected in Mum, listing everything on the death certificate. She may have had all those conditions but she was not actually dying of any of them at that point so I think that is very misleading.
Interestingly, Parkinson’s was never ever mentioned again!
This is my story as a: Family member
NHS Trust (or Provider): The Princess Alexandra Hospital NHS Trust
Timespan: 2018
Did you complain?: Yes
Did the Trust (or Provider) retaliate?: No
Would you recommend PALS as an impartial intermediary?: No
After investigation, did the Trust (or Provider) respond satisfactorily?: No
Did you take your complaint to the Ombudsman (PHSO)?: Yes
Your ethnicity: White British
Have you experienced suicidality due to this?: No
Are you autistic?: No
Are you disabled as defined under the Equality Act 2010?: No
