"Liverpool Pathway"

About: Devon PCT / District nursing South Western Ambulance Service NHS Foundation Trust / Emergency ambulance Torbay Hospital

(as a relative),

There has been much comment both in the paper and on television about the Liverpool Pathway, especially so since a number of patients have recovered after intervention by relatives despite hospital staff being against it. I had never heard of this until my niece mentioned about end of life protocol as my mother lay gravely ill in hospital. As you will see, like the media says, the Protocol was not followed. I was never informed what they were doing, why or when. The hospital doctors did what they did without consulting anyone.

A nurse in charge was particularly unhelpful to say the least as was one ambulance driver. Instead of contacting me as he should, I found it very difficult to see the consultant. What is worse, I now find the hospitals are paid extra for every patient they put on this pathway. Also that in some hospitals the death rate is much reduced following them being paid extra to keep patients alive. "If a cash bonus results in more lives being saved then what that is really saying is that normally the hospital allows people to die when they could be saved. The money does not directly affect the care, it only affects the mind-set of the people providing the care. They COULD save more lives, but they really can't be bothered without additional money as motivation." This is from the Daily Mail Online.

I am told I am not allowed to name names and perhaps the hospital involved but have very little faith in this hospital and some of its staff who failed us all. I and many others will now feel strongly about what may be another national disgrace.

This is but a mere cut down version of my original opinion.

Mum was ill and an out of hours doctor found all to be okay except for a severe urinary infection, making a prescription. Whilst this was correct it did not have the usual effect so I called NHS Direct and explained position to a nurse, then a senior nurse who advised hospitalisation and an ambulance took her to hospital.

Later that night a doctor rang to ask about medical history and said Mum had pneumonia from listening to the chest and an X-ray. Antibiotics being given. A woman was changing the catheter (odd because it should have been changed the night before when it was blocked). I was told by her to wait in the common room and would be told when they had finished. 25 minutes later no-one came to inform me so I went to the bedside, all finished and the woman was busy elsewhere. I asked her if he could see the nurse in charge to find out how things were. She repeated the question and went off. No-one came after 15 minutes. I asked again at the desk and was told someone would see me. Eventually the same woman came and asked if I wanted to ask about mum. Apparently she was a nurse. She certainly didn’t act like one and her attitude to a few simple questions about my extremely ill mother were not compatible with her job. Mum was on a saline drip but only a quick attempt with an NG tube to administer liquid nutrients was made and abandoned. Mum also had an oxygen mask.

A doctor rang to point out further complications and said further decisions would be made after the weekend. In my opinion, it is now a well known fact to all who read the papers that at weekends there is a lack of more experienced doctors available and that the death rate of patients goes up as a consequence.

Mum did not respond to the antibiotics and I was informed she may not live very long. On the Monday morning I found the drip and drugs had been removed but could get no reason why from the staff. I asked repeatedly to see the consultant and after some hours he saw me for the first time. He showed me a scan and said there was hope and that mum was in a vegetative. He said giving further antibiotics for the infection would not in effect help the brain and reattaching the saline drip would if anything only increase pressure on the brain. In his view the best thing was to leave things as they were and let nature take it’s course. Death would come within hours or a few days at most.

If all had been done properly and explained beforehand I would not have felt so bad. They should not have initiated the Liverpool Pathway without my permission.

When later that day they even removed the oxygen mask I asked for mum to go home with me. Some hours later this came about. I had to write a dictated letter and sign it first. I will say one of the ambulance men was very sympathetic but his partner was to put it mildly extremely unhelpful. I could say much more!

Mum died 4 hours later in her bed as she would have wanted whilst the district nurses were in attendance. I saw her draw her last breath, a moving experience. Mum would have been happy knowing she died at home in the care of one she loved and held on long enough for this to happen.

I believe mum was in a dire situation and would have died anyway but the way she was treated and the failure to notify me beforehand regarding the Liverpool pathway was disgusting. It is a time when relatives need as much information as possible so that they and only they can make the choice whether to proceed. I feel sure countless others have had bad experience with this so called Liverpool Pathway and the way it is administered. I see reports that some patients have actually recovered with help from loving relatives despite reproval from attending medical staff.

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Response from Torbay and South Devon NHS Foundation Trust

Dear ‘Elvis’

We are really sorry to hear about your family’s experience at Torbay Hospital last year.

We would like the opportunity to discuss your experience with you. If you are happy to talk to us about this, please contact our Patient Advice & Liaison Service (PALS) so they can look into your situation in more detail.

A PALS Officer is available in person, Monday to Friday, between 10.00am and 2.00pm. You can contact them by calling 01803 655838 or on our 24 hour freephone number 0800 02 82 037. If you get through to the voicemail service please leave your contact details and you will receive a call back within two working days. PALS can also be contacted by Text Phone on 01803 654742, by FAX on 01803 617162, or by email (your email will go direct to our PALS Service).

In the meantime it might be helpful to read the Consensus Statement made recently by more than 20 organisations in the UK including Age UK, Alzheimer’s Society, British Heart Foundation etc in response to the recent headlines regarding the Liverpool Care Pathway http://www.endoflifecareforadults.nhs.uk/assets/downloads/LCP_consensus_statement_24_09_12.pdf