Be Afraid, Be VERY Afraid….Coming to a Hospital Near You……The Liverpool Care Pathway
The Liverpool Care Pathway was designed by the Marie Curie Hospice in Liverpool. It was designed to stop Cancer patients who expected to die within 33 hours, receiving unnecessary and often painful treatment. It was developed to help a patient die with dignity… that was until greedy hospital administrators and British Government officials got hold of it.
The Liverpool Care Pathway is now readily being used throughout England and Wales to help hospitals cut back on expensive treatments of the young, disabled and elderly patients, it is simply being used to free up hospital beds and cut costs.
Here is my Mum’s story – please be aware that this is not an isolated incident of cruelty and deliberate abuse. if after reading this you want to know more, or know how you can help fight against this happening to other vulnerable people please feel free to contact me.
Florence May Holmes 20.8.32 – 20.3.12
Up to 29th November 2011 my Mum was fit and well, she commuted alone to and from Fleetwood every week , and lived independently despite having a disability.
In November 2011 one of my mums kidneys stopped working and she acquired pneumonia, Mum was admitted to the Medical Assessment Unit (MAU) at Aintree University Hospital on 30.11.11. My sister and I were informed that our Mum might die. We made it known to all medical staff that Mum was scared of hospitals (how right she was) and would often use the phrase “I’m fine” even when she was ill. Mum also had a fear of doctors and because of her genuine fear (her lack of visits to her GP is evidence of this) my mum, my sister and I requested in writing, that we should be present at all ward rounds and consultations,, both my sister and I took time off work to facilitate this.
This request was blatantly ignored. on 1.11.11 one doctor argued with me in front of my mum and said they would only allow us to stay with her IF she was dying which she was clearly not! . I later met with this doctor who informed me Mum was not dying.
Mum had lost her left hand in an accident many years ago and her right shoulder had been broken some years ago when doctors at Aintree were fixing a dislocated shoulder, because of this mum struggled to cut up food open containers etc. My sister and I made this known to staff and requested that we stay with Mum to help her eat. This request was refused and we were told that we would have to leave during meal times. I was already concerned about the poor standard of care and conflicting information on the MAU and made excuses to have to “call back in to collect something” and on more than one occasion Mum was sitting in front of a cold tray of food with the food uncut, and tops left on desserts and drinks. When I challenged this Nurses replied that they were busy and they would get round to it. This type of neglect was consistent .
Mum was then sent to Ward 22 where she stayed for approximately 2 weeks and discharged (approximately 15.12.10) She was discharged without an aftercare plan despite my telling staff mum lived alone. Mum had also developed a pressure sore on one heal on ward 22. (This is more evidence of neglect) The night Mum got home, she fell on the stairs on her way to bed and she was readmitted to ward 32, we were informed that Mum was still ill and the pneumonia had not cleared.
On January 5.1.12 she was discharged with a full aftercare package and still requiring a nurse to dress her pressure sore. Mum was readmitted on 20.1.12 to ward 15 with community and hospital acquired pneumonia that had not cleared.
It was at this point my sister and I decided we should catalogue the abuse.
22/1/12 Tablets left on her table in a dispensing cup Mum had restricted use of her arm and had poor eyesight. We Informed staff of this and were told they would make sure she had her tablets.
23/1/12 Tablets left on her table in a dispensing cup
26/1/12 tablets left on a table in a dispensing cup
We requested a meeting with The doctor and the Consultant. Again we raised our concerns about mums treatment and her fear of hospitals and doctors and it was agreed there should be 3 way communication.
26/1/12 Mum had water retention and her ankles were swollen . The footstool provided was far too high and it was causing mum pain. The physiotherapist said they would get mum a lower footstool.
27/1/12 My sister and I noticed that Mum was not eating but Mums foodchart stated that she was eating almost everything. We informed the nurse. We were told they would monitor her food intake.
28/1/12 I informed the nurse my mum was in severe pain and was tired and that she appeared to be deteriorating. I asked if her oxygen levels had been tested and I was informed they were OK, however Mum was visibly weaker.
29/1/12 I spoke to the deputy ward manager and told her mum was still not eating and her breathing seemed laboured I told her Mum was tired and weak. The Deputy Ward Manager told me Mum was not too weak and that she had walked to the toilet alone using her delta frame.
30/1/12 At approximately 7pm, we observed that all of Mums tablets had been left on the table in the dispensing cup. Mum had been put on oxygen and had deteriorated further. A Nurse brought a drip and hung it over the bed lamp She informed us that Mum had a chest X-Ray and had pneumonia on her lower left lung. She was surprised that Mum did not have a canula and said that she had asked the Doctor to do it at 9.30pm the canula still had not been done. At 10pm we were informed that this had been done and Mum was on anti-biotics.
31/1/12 10.55am I telephoned the consultant’s secretary to request a meeting with him. We were given an appointment on Thursday 2/2/12 at 11.30am I informed the secretary that we wanted to meet with the consultant himself
When we met him we asked about Mums prognosis – given the fact that we were told on the MAU that mum was dying. We were informed that mum was poorly and may require an operation on her kidney.
We informed him that Mum was not eating or drinking properly and asked what was being done to ensure she was kept hydrated and had enough nutrients
We informed him about tablets constantly being left on Mums table for these points he said he would speak to the ward manager
I asked why I was ignored when i had told the nurse I suspected Mums oxygen levels had dropped and was subsequently proven right there was no reply
I asked how they would monitor Mums oxygen levels I was told this would be done through blood tests.
We informed him that Mum had deteriorated that her speech was not right and the fact she struggled to get to the toilet with a frame and assistance was a long long way from how she was in October. He did not comment
We also informed him that Mums legs were swollen but despite this she was not being provided with a footstool. he said he would ensure that a footstool was provided.
31/1/12 Mum informed us she had not eaten all of her food but her food chart said that she had. Tea was being counted as fluid (despite the dehydrating effect of caffine) and Mum was only having small sips of tea. Mums chart said that her canula was fitted at 20.20 but it was not fitted until 22.00
While we were there a nurse had asked Mum what she had eaten – Mum could not remember, it was at this point we realised mum’s food intake was not being monitored rather than someone simply asking mum what she had to eat.
31/1/12 3pm it was noticed that her antibiotic drip had finished and was tugging on mums arm. we asked for it to be removed . At 7.15pm I had to ask staff again to remove the same drip. The footstool mum had been provided with was on the opposite side of the bed.
1/2/12 Tablets left in dispensing cup on the table
1/2/12 Nurse said Mum was lively – this was a lie Mums speech was slurred and she was very grey in colour and was lathargic. again tablets had been left in the dispensing cup on her table.
2/2/12 We met with the consultant
We informed him about Mum not having the canula fitted until 10pm
Drs kept referring to Mums TB – Our mum had NEVER had TB
We highlighted that up to 29.11.11 Mum was able to walk, she was independent despite her disabilities. We highlighted that mums speech was slurred and she could not stand unaided the movement in her left arm had deteriorated Mum was drooling from one side of her mouth. Since the admission to ward 15 Mums short term memory had deteriorated.
2/2/12 My sister asked for Mums oxygen to be put back on a Nurse did this. Later the doctor pulled me to one side and told me that ONLY nurses should put the oxygen back on Mum. He was implying that my sister had done this and it was against the agreed plan of care. I informed him that a Nurse had put the oxygen back on. He said nothing in reply.
2/2/12 tablets left in the dispensing cup on the table but the Nurse informed us they had watched mum take her medication
2/2/12 Mum had not had any of her ensure drink. Mum was clearly upset and had been crying. She informed me that the urologist had told her he was going to put a drain in her kidney “early next week” . I spoke to nursing staff about this – they were gathered around the table having a chat. They informed me the Urologist had NOT seen Mum and she was confused . I spoke to The doctor who informed me nothing would happen until the pneumonia had cleared. Once the pneumonia had cleared, they would move mum to the rehab unit and she would be treated as an outpatient for her kidneys. I went to explain this to my mum, telling her she had been confused but the patient in the next bed to Mum “Dot” said that she had heard the doctor telling Mum and what my Mum had told me was right. I went back to tell the Nursing staff and they laughed and said “we have more than one confused patient on the ward’ I found this comment particularly offensive and left the ward sobbing as the pressure and stress was becoming too much to bare.
3/2/12 tablets left in the dispensing cup on the table
3/2/12/ Mum had a very sore mouth, it was dry and had open wounds and it was too painful for her to eat. i asked the Nurse if Mum could have porridge she said porridge was not on the menu but used a low salt menu to get Mum her porridge.
4/12/12 Mum did not have the footstool
7/2/12 mum still had difficulty eating her mouth was still very sore I asked another nurse about porridge, she brought Mum a soft food Menu – mum had never been offered this before despite needing it.
7/2/12 I arrived on the ward Mum was sobbing. She had had a canula put in and was told she was having a nephostromy tomorrow . A Nurse confirmed this. Again despite numerous requests to be present whenever mum was seeing a consultant our requests were ignored. We had even put the request in writing and Mum had signed this.
8/2/12 Mum had been put back on oxygen The doctor informed us that Mum had pus in her kidney and the kidney wont clear while the pus is there so a nephrostomy was essential. Mum also had an abscess in her stomach and we were told this may clear after the nephrostomy – if not it may need to be drained. we were also informed that the swelling in mums legs could be an indication that everything was “backed up from the Chest infection ” and this could affect her heart and she was to have a heart scan. I informed the doctor that at 9am Mum walked to the toilet but was very breathless and needed 2 nurses to help walk her back to bed
8/2/12 Mum was taken down for her Nephrostomy. The surgeon informed me that mum had TWO pressure sores, one on each heel and told me that she was completing an incident form as one wound had gone close to the bone. She asked me to ensure that the staff on the ward dressed the wounds.
8/2/12 3pm had to remind The nurse to dress Mums pressure sores 7.30pm two nurses came to dress the sores.
On ward 15 on 2 occasions mum contracted the Norovirus, yet doctors and wrd staff were frequently observed not following the correct hand hygiene procedures when they were walking on and off the ward and between rooms.
My sister and I complained about the standard of care in writing to the Matron.
9/2/12 Mum was moved to ward 2 Much better standard of care! Mum was given a chair with a leg rest and was offered a soft food menu, without us having to ask. Mum was also given a red tray for assisted feeding.
10/2/12 Mum moved to another room her legs were dressed to help with the swelling
12/2/12 The abscess in mums stomach Burst.
On ward 2 we didn’t keep detailed notes as the standard of care was good.
On 9.3.12 Mum was informed she would be home in a few days
11.3.12 Mum got another infection. Doctors tried to insert a drip into her arms but couldn’t find a vein.
A senior doctor told us Mum was close to death and they thought it best not to take her to intensive care and scare her by putting “lines in her neck” He said all of this in fornt of my mum who was terrified so she said she didn’t want to go to intensive care.
11.3.12 Mum was moved into a side room. The doctor told us Mum would die in a day or 2. On the first day we tried to give mum sips of water but when she swallowed it wrong the nurse said we were best not giving her anything to drink and just to swab her mouth, we did try this but Mums mouth was still far too sore and putting gauze in her mouth was causing her pain. After 5 days of no food and drink, Mum was still alive but was in a great deal of pain. My sister and I queried the withdrawal of treatment and we were asked to speak to a pallative nurse. The pallative nurse informed us that mum was on a care pathway and this slow death was normal and could take up to 2 weeks . When I said I felt like we were murdering our Mum we were told “it wasn’t your choice to make, the doctors make the decision” We were told that Mum would not be feeling hungry or thirsty as her body was preparing to die. We were given a leaflet about the Liverpool Care pathway.
Mum was in agonising pain for 10 days this was caused by the Liverpool Care Pathway. It got to the stage when we were unable to hug our mum, or comb her hair or hold her had . We were told by a nurse just to rest Mum’s hand on ours – even this became too painful for Mum to bare. Mums body began swelling – we were not warned of this we had to remove her rings from her fingers as they were turning blue, this had not been picked up by nursing staff. Fluids were leaking through mums hands (we were not told about this either) after 10 grueling days Mum died. This was not a painless and peaceful and kind death this was torture for our Mum and for us. We had wrongly put all of our trust in the people who were meant to be doing what was best for Mum.
I have since looked at survival rates for people with no fluid or food intake and what I have seen states 8 – 14 days. The fact that Mum was almost 80 and lived 10 days without any food or water surely proves she was not dying and may still be here without the Liverpool care Pathway.
The treatment of my Mum was wrong it was abuse Emotional/psychological, physical, neglect/acts of omission.
This has made my sister and I suffer with haunting memories – we have since learnt of people surviving because families removed relatives from the Liverpool Care Pathway – we trusted doctors and nursing staff we wanted what was best for mum but we feel we helped the hospital murder her.
The Liverpool Care Pathway it is far far worse than any euthanasia , if an animal is ill and a vet diagnoses a terminal illness you are expected to do the kindest thing and have the animal put to sleep. You do not have the right to withdraw treatment and starve the animal to death – if you did this you would rightly be prosecuted.
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Oh, this is just heartbreaking, Carol. . . I am so, so sorry for your loss, and the pain your mother suffered. I ran across an article in The Examiner several weeks ago about The Liverpool Care Pathway, and how hospitals were, and perhaps still are, being paid to use this protocol as a means to cut healthcare costs. Here in the US, we may be facing a similar fate as our government has taken over our healthcare system as well. This is all distressing beyond words; When did we stop valuing the sanctity of life . . .:-(
This is a disgusting litany of failures from our health service.
Sadly it is not an uncommon story. My father In Law died 6 years ago in a hospital in Brighton. The care he received there could not be faulted. He died, peacefully, without pain and with dignity. My Mother in law’s treatment in another Sussex hospital could not have been more different and was, in fact very much the same list of failed procedures and orders not being carried out.
The whole system seems to be a lottery. Some places do a great job with damn all resources, others, with overflowing coffers do a poor job.
As for the Liverpool Care Pathway? Care? Where is the care in this procedure? To my mind there is none.
I am so sorry for the terrible treatment of your mother and her subsequent death.
I am sure your story is not unique and has been repeated many times in many hospitals.
To my mind, it is a scandal that needs to be exposed, Dealt with and remedied, not at NHS pace, with enquiries and committees for years, but now. Right now!
Horrific Carol, went through the same thing with my Dad in 2000. Still raw and very painful. 6 weeks of neglect and endless complaints my Dad died. No one can imagine what you are going through. Take care Sasha xx
this is terrible carol i really feel for you and i know how you feel so well…my mum is in hospital right now and it scares me so much
Shocking carol, I am so sorry this happened to your mum, you and your sister. I do not like hospitals either, had experience at a private hospital, there for an emergency op, didn’t have time to choose my surgeon, he appeared just before i went to theatre told me i probably had cancer or might die in the theatre, if i survived i would be in hospital for five days. nurse did not appear at any time when i was back in the ward inspite of me ringing the bell. When hubby came in he unplugged me and took me home and looked after me himself. When he had an emergency I told the ambos to take him to public hospital in our street, they were wonderful. he was transfered to private hospital for his op so we could choose surgeon, first night nurse went off her head shouting at patients and staff in icu. got him out of there into private room, then a particular staff member kept harrassing him insisting he be moved to rehab, he rang me to come get him, i did and this person rang me at home and told me he must come back for rehab, i asked what was it, told he had to walk up and down the corridor lol. Apparently different wards have to keep their numbers up, I said no and she rang every day until i threatened to call the police. I feel very scared for our seniors in hospitals and nursing homes, both mum and dad had falls under their care. (((((((hugs))))))) to you carol I think you did the very best you could for your mum and i so hope with time the pain will ease for you xxxx
I worked as an aide in three different nursing homes in Oklahoma. The types of abuse your beloved mother suffered are not unique, but I am proud to say they did occur where I worked. All patients, of all ages, and all medical problems deserve the best of care by the best of providers.
It does not matter whether the care is provided freely, or at cost. Those providers who are unable to obey the laws of common decency should ALL seek another form of employment.
Your mother’s suffering is over, praise God. Only time will lessen your’s. Everyone here is as one in their love and compassion for you and your family.
Love, Jackie XXXX
Oh Carol I can empathize with you – my mother was treated very badly in the last 10 months of her life at two public hospitals and eventually a nursing home. She died 5 years ago in agony, and I still cry when I think about it. My niece (my mum raised her) and I complained in writing but nothing was done. To let someone die in agony is criminal – like you said if we did that to our animals we would be prosecuted. I have made a vow to myself that I will never go into a nursing home or linger in a public hospital. I am so so sorry for your mother’s treatment, and know how helpless you feel when no-one will listen to you. I pray that your pain will lessen as time goes by. Take care xoxox
Thank you all so much for your comments and support.
I implore you, share this story and warn people that if they tell you someone is only going to live for a day or 2 so will put them on the LCP – tell them no. Tell them you will sue them if they do it. It is happening every day where people far exceed the given 33 hours which proves it is being used inappropriately.
Doctors are Doctors they are not God and have not right to choose who lives and who dies.
the liverpool pathway scares witts out of me,i think it cruel no human should do that to another,one thing withdrawing active cancer meds but water pain meds and food are humans rights….food water pain meds wont extend life but will make passing alot bearable and it is possible to get a fair judgement as to life may be extended…79/80 is not as old these days and good care could expect to live another 30yrs..what happen to your mum carol is sadly not uncommon…
the days when i was a nurse care and kindness and common sense with a must,that seems to gone by the bye now..
it should been down to your mum and you and sister how best to treat your mum,not alot of know all lack of humanity medical staff…my heart go out to you
dear carol..i don’t know what to say..i cried when i read what your poor mum went thru..i believe there’s a special place in hell for those in the medical profession that abuse the elderly…they should have been taught better and not got away with this abuse…i pray you and your sister find peace as you did all you could or was allowed to do.. xxxx kat
Thank you
I have heard from a solicitor I contacted. He is based in Wales where I understand the same thing is happening. He is looking at a ‘group’ application to the European Court of Human Rights for a “declaration of the violation of a persons human rights” against the Liverpool Care Pathway. He is organising a conference for those people affected who wish to be represented by him.
Being from Liverpool I know only to well there is strength in numbers – the Justice for the 96 Campaign only goes to prove that, so I am hopeful that one day we will get justice for my mum and for anyone else who has suffered as a result of this barbaric and inhumane practice after which I will be able to try to focus on on the positive happy memories of my beloved mum rather than of the haunting memories of her suffering and horrific death.
Dear Carol, how my heart breaks to read your post, to hear how your much loved mother, your family, and yourself have suffered and are undoubtably still suffering over this appalling instance of neglect and cruelty. You see my family are suffering in a similar way. Almost a year ago, we lost my father due to the lack of care, which resulted in his agonising death. At the time I posted here, and I have just gone back and taken a look at it. It was called ‘our wonderful National Health Service’. I thought I would update………… our complaints against the hospital have been going backwards and forwards between them and us, since…they have lied in many instances, and are undoubtably hoping that we will tire and give up. This is not the case, whilst I personally am not actively involved in what is now happening, as I am not strong enough to take it on board, my sister and brother are copying me into all communication. In the past few days, it has been agreed to involve our MP…(he has been spoken to previously). Unless this can have the desired effect of them admiting blame, and apologising then the next step will undoubtably be to take legal action. This is all a very long drawn out and painful process, and adds greatly to the grief suffered over the actual loss, but it is the decision of all my family that someone has to be accountable for the terrible circumstances of our Dads death. Only then, will he be able to rest in peace, and we able to remember the good times shared with our wonderful father
So Carol, I hope you believe me when I say that i understand totally what you are going through, and yes through experience I am afraid, very afraid!!!! My thoughts and prayers are with you xx
I am so vey very sorry to hear of your suffering. Thank you for sharing this. We have been invited to meet with the hospital and discuss our concerns, I am waiting for the solicitor to adIvse me. I have been diagnosed with post traumatic stress Caused by these events. I know in my heart that iwhen the LCP is stopped is the time I will find peace. I hope that one day you and your family and anyone else who Is suffering also finds peace. Take care. Carol x
Carol
Please make contact as I would like to meet with you as you are not on your own regarding this Hospital and what happened to your Mother. I would like to discuss what happened as a family and what happened to our Mother at this Hospital.
Please make contact I have read what you have wrote, and can fully understand.
Make an Alliance and Group in numbers.
Look forward to hearing from you so we can discuss and meet.
Henry1234
Carol
Please make contact as I would like to meet with you as you are not on your own regarding this Hospital and what happened to your Mother. I would like to discuss what happened as a family and what happened to our Mother at this Hospital.
Please make contact I have read what you have wrote, and can fully understand.
Make an Alliance and Group in numbers.
Henry1234
I just tonight read your post, Carol. My heart goes out to you and your family. I was in tears reading the ordeal your Mother was put through. There is a place called Hell for the people who did these horrific things. Your Mother however receives eternally blessed peace .
I am in the USA but of course there is mistreatment and medical malpractice here as well. We did not suffer the terrible nightmare that you did, but your story brought back memories of both my Father and Mother’s separate hospital treatment. My brother found my Father bruised, strapped in his bed by the wrists, waist, and his one ankle as he was an amputee. No .. my Father wasn’t a mental patient … he was a HEART patient. A brilliant man who’d questioned his medication. My Father insisted pictures be taken of this. I hope I never run across them. Nothing came of it legally. After this, a hospital blood procedure gave him Hepatitis C and also he was forced to take heart medication in a way he knew to be inconsistent and detrimental. We brought him home where he recovered. Later he suffered a broken sternum and ribs while receiving emergency paramedic treatment, but lived until the Hepatitis and heart complications took him in 1994.
My Mother was prescribed 13 medications which were not meant to be given together. She was getting seriously worse. We questioned it. When the mistakes were realized she was abruptly taken off ALL of them at once. The reaction to it required her to be placed on the psychiatric floor. We got her to a rehab facility and then home where she lived until 2010 under my personal care.
My bladder was sliced during the Cesarian and also my son had to be aspirated at birth 33 years ago. The delivery was so sloppily done and another doctor took over afterwards because, as I later learned, my physician was hurriedly rushing to get to the car races. Also my surgery 15 years ago was a travesty, done unnecessarily for the insurance payment. I have not seen a doctor or taken any medicine since. I have not even signed up for Medicare and will be 65 years old in less than 2 months. Why?? I’m n-e-v-e-r going to another doctor or near another hospital.
None of this compares to your story. You say you continue to suffer and I believe you and I’m so so sorry. The medical profession is an inhumane money making business where people are reduced to cases not faces, and it is only getting worse. God bless you Carol, and your whole family, and I hope nothing like this ever again happens to you or yours.
Love, Heart / Carole
Hey Carol,
I’m really sorry for your loss. My dad died at the hands of the murderers on Ward 22 of Aintree Hospital March 2014. He suffered through much the same treatment as your mum. Even as a nurse I was unable to stop them because they are so practiced at their craft.
I have an ongoing complaint with them that just seems to be going back and forth so far. I contacted the Ombudsman who suggested I follow up the original complaint with a list of specific questions. They said if the hospital fails to answer them satisfactorily (as they did with the original complaint) they will take up the case. However, it is beginning to look as if all of the government robots at every level from the police, the coroner, PALS, and even the lawyers we’ve contacted are all in on the big secret as we have been blocked at every turn from investigating the suspicious circumstances surrounding my dads’ death thoroughly. When I’m in the UK, I honestly can’t drive by a street sign with the name of Aintree University Hospital on it without becoming nauseated and distressed. I know what they did.
I would love to contact you as I see you have an interested lawyer and other people that have been through this.
My prayers are with you and yours for a resolution and some peace from the nightmare I know you’re going through.
Hi Carol, so sorry for your loss. I’m just wondering if there was anyway I could contact you. My Father passed away this year in Aintree Hospital under very similar circumstances horrendous neglect. Thanks, Rebecca