"They all failed their duty of care for a dying woman"

About: East Midlands Ambulance Service NHS Trust Royal Gwent Hospital / General Medicine

(as a relative),

I feel like the National Health Service, St David’s Foundation and Social Services have all tried to shift blame onto each other. None of them have taken responsibility for what has happened. In my opinion, they all failed in their ‘duty of care’ for a dying woman. In this day and age I find it is unacceptable. This is what happened:

I am writing in order to raise concerns over the care my Mother received during her illness.

I feel that all individuals who looked after my Mother were helpful and supportive. However, I feel that the systems in place and the poor communication between all the services involved failed my Mother. Each organisation that was involved in her care failed her at some level.

I appreciate my mother was a very independent and stubborn person, however, I feel this was used as an excuse. Her needs were assesses thoroughly and accurately. The professionals involved in her care should have been involved a lot earlier then they would have had a better understanding of how the disease was affecting her quality of life, ability to cope independently and the amount of pain she was experiencing. I think if they had seen her at home in her own environment they would have known she could not cope and that her pain relief was very poorly managed. From what I saw, often the only contact they had with my mother was over the telephone.

My mother was diagnosed with lung cancer over two years ago. She initially received intensive radiotherapy as an outpatient and was told the treatment had been successful. However, the cancer returned and she then underwent a course of chemotherapy. This did not have any impact on the tumour. She was put o Terevacin to see if this would help to shrink the tumour. However, the side effects were so debilitating and had such a detrimental affect on my mother’s quality of life it was agreed that she should stop taking them.

My mother’s condition continued to deteriorate and by the beginning of November 2009 she was no longer able to go out of the house. The only time she did venture out was to attend hospital outpatient appointments. These often caused her a great deal of stress and anxiety and discomfort. From this point on my brother, aunt and I began o visit her every weekend to ensure she had shopping and to do general jobs for her. Her friends and neighbours called around to check on her and help her.

St David’s made an initial appointment to see her in November and explained all the things they could offer her. My mother said she wanted to stay at home for as long as possible. The nurse’s response was that ‘if they could not do that for one of their own who could they do it for’. My mother gained a great deal of reassurance from this as having been a nurse, working in a local Nursing home for many years she did not want to end up in a home but wanted to remain independent for as long as possible.

The St. David’s Nurse said that my mother’s own St David’s nurse would call and see her the following week, however I don’t think this visit actually occurred.

All of us were increasingly concerned with the amount of pain my mother was experiencing and we all expressed concerns over her ability to cope but we felt reassured that St David’s were now involved. I went to stay with my mother for Christmas and I discovered that St David’s had had very little contact with my mother and I was told they were only making emergency visits over the Christmas period.

On the morning of December 23rd after my mother had had a very disturbed night, when she could not breath and could not get warm, I contacted St David’s who said it would not be possible for anyone to visit. They suggested I phone the GP. This I did but her condition deteriorated and at one point I could not rouse her. I was told by the GP to ring 999. She was taken to Royal Gwent and put into the resuscitation bay as her heart rate was erratic and did not initially respond to treatment. At one point it reached 271 beats per minute and the nursing staff explained that she had come close to needing her heart to be shocked into a normal rhythm. Luckily this was not necessary.

After being moved onto an assessment ward and then the observation ward she ended up on a ward, where she remained until she was discharged on January 8th 2010.

On her admission the doctor had said the Palliative Team would assess her needs and a care package would be put in place before her discharge. I was very relieved that someone was taking our concerns seriously and at last help would be provided.

On several occasions during my mothers time in hospital my brother, my aunt and I all raised concerns about her ability to cope on discharge. We all asked about when the assessment would take place. We explained my mother’s reluctance to be in hospital and asked if it would be possible for her to have some nicotine patches or something suitable to help her cope with the nicotine withdrawal symptoms. I was told by the nurse this would be discussed with the doctor. Nothing was put in place.

As none of us live close to my mother I requested that we be informed of her discharge in advance and be kept informed about the outcome of the assessment made by the Palliative Care Team. I was reassured by several members of staff that this would happen. On the Friday afternoon when my mother was discharged I received a phone call from her saying that she was going home that afternoon. I contacted the ward immediately as did my brother. We both raised concerns that there was no care in place, no assessment had been done and we had no notice of her discharge despite asking for this to happen on several occasions. We were told that my mother was medically fit and had been assessed as being able to climb the stairs. My mother had been very confused during her stay in hospital. Other patients had complained about her, from what I understand, and despite all our concerns no Palliative Care assessment or package of care had been put in place. I don’t think my mother even have a bath during the time she spent in hospital. The nurse I spoke to said that my mother was seeing Age Concern on Monday 11th January and carers would also be in place from the Monday. I was also told that St David’s would do an assessment from home on the Monday 11th. I was confused as to who had arranged this as I was with my mother while she was in hospital. This seems highly unlikely. My brother was told the hospital had arranged for this to happen. I was also told that my mother had turned down an assessment by Social Services earlier in the week, while Social Services are saying the hospital had informed them that she was able to manage her own care and an assessment was not necessary. On speaking to my mother she said that no such offer of a Social Services assessment had been put to her.

At 4pm that afternoon my mother rang me to ask where I was and why I wasn’t there to pick her up. At the time I was at work in Lincoln. She thought she was talking to a friend who had kindly offered to take her home.

The friend who took her home offered to stay overnight to help her settle. She ended up there for almost a week until my aunt travelled from Nottingham to take over. After one day attempting to go upstairs it became blatantly obvious she was unable to manage the stairs and at one point her friend thought she would have to call an ambulance. Her two daughters carried a bed downstairs so my mother would not have to go upstairs again. My mother was unable to cook for herself or make a hot drink when she was initially discharged from hospital even though the hospital said she was able to manage her own care.

Due to the heavy snow my aunt was unable to travel from Nottingham to Newport until 12th January 2010, when she was shocked to see the deterioration in mother’s health and the pain she was in due to her condition. My mother also had a bedsore which was dressed by her friend’s daughter who happens to be a nurse. The District Nurse and St David’s Nurse were due to visit on the 13th January but cancelled due to the weather and visited on the 14th January instead. During that week my aunt telephoned Social Services numerous times requesting carers to be put in place as she could not stay, due to commitments in Nottingham. Duty workers would not to pick up the case as a named worker was supposed to be dealing with it, but obviously this was not the case. It was not until Late Friday afternoon, when my aunt rang Social Services yet again and told them she would be returning to Nottingham that night that I believe this case was taken seriously. At this time my mother was not capable of feeding herself and making a hot drink. Carers were put in place the following day, 16th January. This was one week after she was discharged from hospital.

If she had not had the help and support of friends, neighbours and family I think she would have died during that first week after her discharge.

I made a complaint to the hospital and the ward sister contacted me to say that my mother was managing her own care. I accepted this at the time but it now seems that we have been given conflicting information about who should have been responsible for arranging an assessment meeting. It was inevitable my mother would have been discharged from hospital and she was determined that this would happened. It is the lack of forward planning and discharging her without care in place that is the issue for me. While in hospital she did not need to cook or make a drink. She did not need to go up and down the stairs. In my opinion, the assessment would have shown that she was no longer able to care for herself.

On the Saturday before my mother died, a month after her discharge from hospital, I had a call from her friend who said my mother’s condition had deteriorated but that a neighbour was going to see her that day and would let me know how she was. The District Nurse contacted me and said she would call the doctor and that my mother may be admitted to hospital again. This did not happen on the Saturday as she recovered a little. My aunt went to stay with my Mother that weekend. On the Monday morning I had a phone call to say my aunt had found my mother on the floor, very confused and in a lot of pain and distress. She called for an ambulance. On admittance to the hospital my mother had to wait a long time in the Accident and Emergency Department before being given any pain relief. She was confused about which medication she had taken. However, under the circumstances I believe pain relief should have been the priority. I think no one should be kept in such severe pain when they are terminally ill and have been admitted as an emergency to hospital. It was extremely distressing for my aunt and cousin to see her shouting out in pain, for hours on end before diamorphine injection was administered. In my opinion, the priority for a terminally ill patient has to be to ensure they have as little pain as possible. It seems barbaric to me to allow someone’s last hours to be so dreadful. My mother remained in very severe pain until a bed was found in the afternoon and then intravenous morphine was administered.

I understand that normally a patient with terminal cancer has a file, produced by those responsible for their care, so that if they are admitted to hospital they are treated quickly. Some members of the Nursing staff and the doctor asked several times if my mother was under the care of St. David’s. No file had been made for my mother. If a file had been made in place then I think this may have prevented her suffering.

My mother died the following day at 4pm. During her stay in hospital she was moved three times. One of these times was during the night. When they moved her at 3am, some of the staff started moving her from one bed to another. I asked that she be left in the same bed as it seemed callous to move a dying patient who was distressed when anyone disturbed her. They said she would be better in a different bed however I think it did not make any difference to her care and as she was unconscious it seems unlikely that it would have made her more comfortable, in fact it seemed to me that my mother became more unsettled. Her breathing deteriorated and she showed obvious signs of distress. On the afternoon my mother died, the Palliative Care Nurse came to see her as we had asked for her to be given additional pain relief. She had been given top up injections but they didn’t seem to me to be sufficient to control the pain. The Palliative Nurse wrote up a higher dose of morphine for the pump and also some medication was administered and my mother died shortly afterwards. It seems appalling to me in this day and age that a dying woman, my mother had to wait so long for pain relief and had to be moved from one bed to another because of what I believe is hospital policy.

Three days after my mother died I had a phone call from someone representing St David’s who wanted to see if we had a complaint about my mother’s care. At this time I was unable to piece together the extent to which I believe some of the system failed my mother. This person suggested the hospital were at fault and asked if at any time a full assessment had been carried out. I said it had not. She said that it would be possible for the district nurse to put in a complaint about my mother being inappropriately discharged following her first admission to hospital. She said she would ring back but had not done so.

My aunt complained to Social Services. The person investigating the complaint was the same person the complaint was about. Although they have admitted that their response was slow and there were failings on their part, for me they do not seem to recognise that their lack of response could have led to my mother’s death. Had it not been for her friend and my aunt, I don’t think my mother would have survived being at home on her own that first week following her discharge. The letter from the Complaints Manager, stated that if a response was not received within 10 days then they would assume we were happy with the outcome. None of us are happy with the outcome. We believe they contributed to the pain and distress caused to both my mother and our family, particularly my aunt who feels like she had to continually chase up the department in order to get care for my mother.

Every agency involved with my mother had a responsibility towards her care and I think everyone of them let her down in varying degrees.

I believe St David’s did not check her and monitor her condition. They did not keep the necessary file for admission to hospital. During her illness she was often in a huge amount of pain. I don’t think her pain was ever managed properly which severely affected her quality of life.

Some of the hospital staff were not aware that it was stressful for my mother to attend outpatient appointment because I think they did not know how the illness was affecting her. I feel that the hospital did not carry out assessments to ensure she was safe when she went home. We feel like they did not listen to or act on the concerns raised by members of her family. We were not informed of her discharge and think they discharged her even though she was not capable of self care. She was not bathed while she was in hospital and I think her nicotine withdrawal was not dealt with. On her second admission to hospital she was moved wards three times. She was moved from one bed to another. She waited a long time for pain relief in casualty and a long time for pain relief on the ward.

In my opinion Social Services did not act quickly enough to provide care for my mother. My aunt felt like she had to contact them continually to get a response. It took a week to get care in place. As far as we are aware, they did not carry out an assessment while she was in hospital. They did not contact the next of kin to discuss her needs. They did not deal with the complaint made by my aunt in what I feel required a rigorous or fair manner.

It seems to me all of the various agencies were not aware of how the illness affected my mother. I think they used scan results rather than looking at how the illness manifested itself. This meant to me that her treatment was not based around her needs rather what they thought she needed. She stopped being an individual.

My mother was lucky she had friends, family and neighbours but lots of people don’t. The individuals involved with my mother’s care were kind and caring but I think it’s the systems in place which let her down.

In my opinion, a thorough investigation of what happened in my mother’s case needs to happen with all agencies being held responsible for their failings. Clear lines of responsibility need to be drawn up to ensure this does not happen again to anyone else. I suggest every person with a terminal illness should have one person responsible for overseeing their care from the moment of diagnosis. They should have responsibility for communicating with other agencies and the family of the patient. They should be proactive in the care of the patient. Having a terminal illness must be very difficult, being in pain, having no hope for the future and being unable to enjoy things or look after yourself, must be awful. Patients should be treated with dignity and a holistic approach to the dying and ensuring they suffer as little pain as possible I think should be a priority for all concerned.

I would appreciate a response once you have had time to fully investigate the matter.

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