"End of life/palliative care experience"

My 82 year old father was admitted to the Edinburgh Royal Infirmary, in October 2013 and he was very quickly diagnosed with end-stage stomach cancer. It was suggested that he be transferred to an NHS Continuing Care facility. Ellen’s Glen hospital was highly recommended to us by a friend (and NHS worker) and so we were delighted when the consultant confirmed that a bed had been found for my father there. Up until this point, we as a family, had no idea of what services a Continuing Care Facility offered, we soon found out a high proportion of patients go there to die, which would mean that Continuing Care was in fact a hospice facility. Not so (and more of this later).

On transfer to Ellen’s Glen, my father, although suffering from early-stage vascular dementia, was conscious, able to communicate, drinking lots and eating little and his pain was being managed by oral painkillers. His mobility was poor, he was unsteady on his feet and was deemed a high risk for falls. Within a few days it became clear to me (his daughter), that his condition was worsening, he was becoming weaker and experiencing more pain. On a number of occasions I spoke to staff members to highlight my concerns and asked for his condition to be reassessed, with specific regard to pain management and the issue of him falling out of bed when trying to use the bathroom.

Family members visited my father at different times every day and we all soon noticed a number of issues regarding staffing levels.

The staffing levels were clearly too low as many of the patients had complex conditions requiring intensive nursing care. Patient’s buzzers were constantly ringing, with some patients also continually calling for help. Lots of changes of staff – which is very confusing and distressing for someone suffering from dementia. Staff sickness levels seemed to be high, meaning that bank and agency staff were continually being called in to cover.

Exactly a week before my father died, my family and I visited him. We found him in a distressed state, clearly in a lot of pain, and he had tried to get out of bed to use the bathroom. We called a nurse and asked for immediate pain relief. This took some time to organise. We expressed our concerns regarding my father’s pain relief and lack of pain management and the nurse confirmed that they were aware that my father was hiding his oral pain relief “as he didn’t want to take it”. Given that my father was confused, dehydrated and suffering from dementia, we felt that the staff should have been more responsive and we requested that a syringe driver be set up for him as his pain was clearly not being managed. The nurse said that wouldn’t be possible, or appropriate and would start with injecting small amounts of pain relief. We spent some time with staff that evening, outlining our concerns, emphasising that my father was too weak to use a normal cup, and that he needed help and encouragement to drink. We were given reassurances that staff would monitor my father more closely and make sure his pain relief was administered by injection.

The next morning my brother and I visited early. What we saw will haunt us for ever. We found my father in an even more distressed stated, half undressed, in soiled underwear, hanging off the bed, shouting for help. There were several large ceramic mugs of tea and cups of water on his side table, which he was too weak to lift to drink.

We demanded to see a senior member of staff. The staff member apologised and said, “ I am sorry that you saw your father like that”. We related the events and discussions of the previous day. The staff member was visibly shaken and upset. They returned to speak to me in my father’s room, and had been crying, it was obvious. In the meantime staff come and go, cleaning the room, cleaning my father and STILL we wait for pain relief. What is taking SO long? The staff who are cleaning my father are on the verge of tears, one says “I am so sorry”. They look ashamed and embarrassed.

Another staff member returns alone to reassure us. They have been wonderful, compassionate and caring in all my dealings with them. Now they look humiliated. Another staff member who is choking back tears.

It becomes clear to us over this period that the home was originally resourced based on simple nursing care needs for residents but this home now has people like my father with very complex palliative care needs. The home simply cannot cope with the demands now being placed on it.

My father finally received a syringe driver on the Friday, only to be told that there was no Doctor on duty at the weekend – only an on-call locum doctor who could be called in emergencies.

We asked medical staff to ensure that the drug levels would be adequate to sedate my father and ensure he would be pain-free. However, it quickly became clear that this wasn’t the case. He was experiencing break through pain every 1-2hrs. This meant that our family had to stay with my father over the whole weekend to ensure that we could get staff to respond as soon as his pain broke through. It was a very stressful weekend as my father still wasn’t pain free and we muddled through as best we could. At no point did any staff member offer to contact the on-call doctor to adjust the meds in his syringe driver. This was eventually done on the Monday when the doctor was back on duty.

Over that particular weekend, 4 patients died at Ellen’s Glen. One of which I witnessed coughing, and choking and his buzzer went unanswered. We found another patient collapsed just outside their room. She had been calling for help and no one came. I had to help one until my brothers could locate a member of staff. This took some time. We were so concerned about patient safety at this point that I took the decision to contact a minister in Scottish Government. I spoke to their office and explained that due to the “dangerously low staffing levels” we felt that patient care was being severely compromised and that someone needed to intervene. We were informed that we should go through the relevant NHS channels to highlight our complaint.

I would like to make it clear that without exception, every member of staff who came into contact with my father, was polite, caring, compassionate and clearly experienced in palliative nursing care. They all expressed the wish that “they could do more”. However, the staffing levels at Ellen’s Glen do not allow for the appropriate end of life care to be given. There just isn’t enough staff or time to tend to the complex needs of so many patients.

We expected a dignified and pain-free end of life experience for my father.

Indeed, that very statement can be found in the government guideline: Living and Dying Well: “ our aim is to ensure the delivery of high quality palliative care to everyone in Scotland on the basis of clinical need not diagnosis, and according to established principles of equity and personal dignity”.

We only get to say goodbye once to a loved one and sadly the last words my father spoke, in pain and distress were: “help me, please someone help me, I’m dying”.

I will never be able to erase that horrendously, traumatic memory.

The facts speak for themselves, patient safety, human rights and dignity are being compromised due to inappropriate staffing levels. This is not just my opinion. May I direct you to the RCN report: Guidance on Safe Nurse Staffing Levels in the UK, where it states:

"in the current financial context there is a real danger that health care providers will look to reduce staffing as a means of achieving short-term savings - but without consideration of the long-term costs or risk to patient care. Fiscally-led changes to care delivery need to be risk assessed for the potential impact on staffing and patient care".

If anyone within the NHS, Scottish Patient Safety, Health Improvement Scotland, Royal College of Nursing or any other official body would like to speak to me further, I would welcome the opportunity to discuss our experiences to ensure that no one else is exposed to needless suffering. Thank you.