"Concern about level of care"

Nearly a year has elapsed since my husband died in Ellen’s Glen Continuing Care Hospital

I have left it until now to post this review as I wanted to make sure that the anger and emotion I felt at the time regarding the treatment he received there should not cloud my judgement.

My husband endured a bad death in a place I feared and dreaded.

My husband was suffering from a very rare and aggressive disease. He had been admitted to the Western General in August 2014 where the care and attention he received was totally outstanding. In the past I have had nothing but the utmost respect for the NHS.

This is why I was completely unprepared for the treatment he got when he was moved to Ellen’s Glen three weeks later

Arrival at Ellen’s Glen

Due to the circumstances of the transfer, I had no opportunity to visit Ellen’s Glen before my husband was sent there.

When we arrived the nurse in charge was busy on her computer. She showed us to the room my husband had been allocated and left us. It was a single room with the door closed and the TV on. He was fully dressed in outdoor clothing and was covered with a thick duvet. By this time he was incapable of moving at all so the bed cover would have remained in place with him sweltering beneath it had we not arrived when we did.

There was no jug of water and we had to ask for one. We also asked if someone could explain about Ellen's Glen House to us.

I was alarmed at the indifferent approach and phoned the Western General after we had been there for over an hour without anyone appearing. The nurse who had been in charge of the ward at the Western when my husband was there said she would contact Ellen's Glen herself.

In the meantime, a nurse came to speak to us.

He:

- thought my husband was my father

- didn't know he had come from Western General

- didn't know that he was blind and couldn't feed himself

- didn’t know that he was incapable of calling out for help

- talked about his care being reviewed every six months ( although he had been given days to live )

- said that they would check on him every 3 to 4 hours which was totally inappropriate

Eventually a senior nurse at Ellen’s Glen came to speak to us. She apologised and said she had been dealing with a staffing issue. We discussed his care. She said that the door to his room would normally be open but they had just had a fire alarm check and had not had time to go round to reopen all the doors.

I was not happy with their level of attention or understanding of his condition. It was also very noisy - loud music or TVs (presumably because people were hard of hearing) and people calling for assistance. It was not the quieter environment I had been told he required and was one of the reasons for sending him there.

Normally Ellen’s Glen has limited periods for visiting but they said that we could have the same open visiting that we had had at the Western General because of my husband’s condition and his very limited life expectancy.

I was not happy with the casual attitude and went back to the Western General to see if they could take him back. This was not possible so I returned to Ellen’s Glen.

Care Plan

I met with the nurse in charge and the nurse who was in the process of making up his care plan. I asked if they were using the Western’s Care Plan in the interim. They replied that they did not use care plans from other sources and preferred to make up their own. This in spite of the Western General being a centre of excellence for the brain disease he was suffering from. Although he had been there for several hours, their care plan was still incomplete.

I can accept that they would want to develop their own care plan, but surely they should have used the previous one until they completed theirs? They said they had no experience of the condition he was suffering from but had checked it on the NHS website. I said that I was unhappy that my husband effectively had no care plan in place despite the fact that he had been in the care of NHS Lothian for three weeks.

I informed them that because his brain was dying, he was suffering from hallucinations which really frightened him. It was imperative that a drug which had been recommended for his condition be administered when the need arose. He was no longer able to tell them or call for help. If they were only checking periodically, it was likely that they would miss the signs that he was hallucinating as you had to be close to his bed to pick up the signals. A cursory glance as they walked past an open door would not suffice. I volunteered to bring in a private nurse to stay with him 24/7. At this point they agreed to provide this extra cover themselves.

The following day I met with the same two nurses and the doctor who was in charge of his case. This was the doctor’s first experience of his particular illness, but she said that she had checked up on it. I told them that this was a particularly aggressive form - less than four weeks earlier he had walked into the Eye Pavilion for an appointment. Doctors at the Brain Research Unit in London who had come to assess him two weeks prior to his transfer to Ellen’s Glen had given him approximately three weeks to live ie he only had one week left. ( He actually lasted a few days beyond that )

I explained how it was easy to miss the hallucinations unless there was someone with him at all times. They explained how they gave palliative care to treat the symptoms, irrespective of the disease.

At this stage I was happy that my concerns were being addressed and they were providing appropriate care.

Daily care in Ellen’s Glen

I think that they provided 24/7 cover (with the nurse leaving the room when we visited) for the next two or three days. They then removed the continuous cover, but did not inform me. By the time I became aware of this, my husband’s condition had deteriorated and his level of consciousness was much reduced, as were the hallucinations. Accordingly I did not comment on the removal of the 24/7 cover.

Subsequently I became concerned again about his condition and the level of attention he was receiving. Accordingly, we arranged to be there ourselves throughout the day. For years he suffered from a chronic back problem which could cause pain when lying on his back, which is the position he was in. I often had to find someone to tell them that he was in pain, or that the motor drive syringe was empty. On one occasion when he was in pain, it was found that the syringe line had become disconnected. Their regular checks were missing these things.

I also found Ellen's Glen House to be a distressing place, with patients regularly calling out for help and being routinely ignored. For example, we went to help an old lady who had got tangled up in her blankets and had been calling for help to no avail and the same old lady calling out she needed the toilet, again with no-one to help. On that occasion I rang the bell for her twice and when help finally arrived she was ticked off.

I also noticed when visiting, that often we were not being interrupted for the regular checks to be done. When I mentioned this, I was told that they liked to leave visitors in peace. I was not happy that the visitors thus became the de facto carers, while the professionals did something else. I had no confidence that the checks were being done when I was not there. There was also the quality of the checks - on one occasion the nurse came in to pick up the folder and then stood outside the door to complete the lengthy checklist – it seemed that she had picked up all the information she needed in a glance while passing. Tick box care seemed to be the order of the day.

Often the entry against a heading was AS (asleep). Presumably this was intended to be used when it would not be appropriate to disturb a sleeping patient. Later I mentioned to another nurse that my husband appeared to be sleeping, but no-one sleeps for 24 hours. She said that it was probably more akin to a coma than sleep. However, AS still went on the check list.

Transfer back to the Western General blocked

Eventually I became frustrated at the neglect that I felt he was suffering. I was getting nowhere with Ellen's Glen House so I contacted the Western and the research people who had visited him from London to say that I was withdrawing my consent to a post mortem. They were aware of my full co-operation before this, so appreciated that I did not take this step lightly. It was the only thing I could think of at the time to make someone take notice.

The following morning I got a call from the Western General to say that they were taking my husband back. I was delighted and relieved, as the care that he had received at the Western General was superb. They said that we would have to wait for an ambulance to become available and that Ellen's Glen House would arrange the transfer.

Later that day I was at my husband’s bedside when a doctor came in. The doctor gave him a cursory glance and asked how he was to which I replied 'catatonic'. The doctor then asked if they could speak to me in the lounge and we left the room. I told the doctor that the Western was taking him back. The doctor replied that this was unprecedented and would have to check with someone higher.

An hour or so later, the doctor asked to see me and informed me that they had assessed my husband’s condition and was blocking the transfer. The doctor had jurisdiction as his doctor in Ellen's Glen House. When I repeated that I wanted him to be transferred, I was asked if I had power of attorney. I did not.

I felt that the doctors decision was driven more by dogma than by my husband’s condition, as the doctor had barely looked at him when they came into the room. The doctor said they had consulted the nursing staff and based on their reports, had decided that he was not well enough to be moved so was blocking the transfer. I found the doctor's attitude to be confrontational and completely lacking in empathy.

My husband endured for a further four days, during which time he continued to have neither food nor fluids. The ghastliness of his illness was compounded by our concern about the level of care he had received in Ellen’s Glen during the last twelve days of his life.

What was good? Some of the staff were conscientious and caring.

What could be improved? Read my account - it's obvious. Don't ignore patients who are calling for help. Give patient care priority over paperwork.