"Palliative Care Service"

I would like to draw several points to your attention regarding the Community Palliative Care Service in Bunbury that I believe needs your urgent review as to ensure others who are in this position are not forced to suffer indignity and substandard care as my spouse did.

My spouse was referred to the Bunbury Community Palliative Care service a few years ago; at the time their main issue was pain management. They had a very complex disease called Graft versus Host disease following an Allogenic Bone Marrow Transplant a few years ago. At the time they were admitted to the service we were a young family with children.

Over a year ago, the Haematologist told my spouse they had only 3-6 months to live and they were admitted to SJOG Palliative Care. My spouse was stabilised and went home with a Nikki pump which the community nurses would administer at home. To do this, 2 nurses were required to come into our home. At times the language that was used by the nurses was inappropriate, for example, “can I chuck a piss in your toilet”, “don't worry the drugs will kill them anyway”, “if you don't go back into hospice the consultant will withdraw their services and you will not have appropriate palliative care in the South West”. There are multiple witnesses from private organisations, as we had cleaners and private carers in our home caring for my spouse who is willing to verify these inappropriate comments.

My spouse was not like the ‘run of the mill’ patient; they were complex, and their treatment varied greatly. My spouse, at times, presented as if they were near recovery whereas, at other times, they were bedridden. They managed to come off the Nikki pump and went on patches for pain control. At times, my spouse relied heavily on oxygen whereas other times they did not require it. My spouse went in and out of hospice care for approximately 18 months. During this time, we had the nurses visit, but it seemed to become a joke and apparent that they thought my spouse wasn't really a palliative patient as their needs varied greatly.

An example of the lack of care given is when my spouse came home from the hospice with a wound on their abdomen that was from a Nikki pump site. I rang and spoke with the hospice and they said the community team would follow this up as my spouse was in the community. However, I was told by the Bunbury team that they do not do wound care in the community. What the hell! Wound care, as is my understanding, is part of general nursing care and Registered Nurses are expected to administer general nursing care. If this is not part of their job description, then surely the community team could have organised someone to address the wound. Luckily for my spouse, I had a nursing background and I did the dressing myself, but the wound took a total of 7 months to heal and put further pressure on myself and my family, not to mention the pain that it caused my spouse.

This year, my spouse became very unwell again and was admitted to hospice. My spouse’s need for pain management was, I believe, stronger and required a larger dosage of medications, therefore it was decided that they would go home with CADD pump as these last longer and we didn't need the community nurses coming out every day.

We welcomed this and thought this was great. But it was not that easy to organise through WACHS; they did not have the capacity to do this in their pharmacy and the Bunbury Community team were not confident in making up the cassettes that go in the CADD pump. My spouse’s admission to the hospice was extended while they could sort out this issue. Unfortunately, my spouse ended up coming home with 2 Nikki pumps, which is what they did not want as they require daily visits from community nurses. I telephoned the Regional Palliative Care Manager and they had no idea what I was talking about and in my opinion, passed the buck to CNS of the Bunbury Team. I believe it was made very clear that there is no communication within this service. Eventually, the CEO from SJOG called me and went to see my spouse to explain that SJOG will cover the costs for the CADD pump and understood our family’s needs.

Further to this, a few months ago my spouse became very unwell and was not able to breathe and was becoming very distressed. Lucky earlier in the afternoon I called the Palliative Care Consultant who gave me some direction over the phone as to what medications I could give my spouse, further advising that if they deteriorate further, I could bring them back into the hospice.

My spouse did get progressively worse at home and I called the on-call palliative care number twice once in the evening no answer. Then again 7 minutes later, no answer. I then sent a text message asking if anyone was on-call; no answer. I gave up calling the on-call number as my spouse was needing medical assistance and rang 000, 43 minutes after I first called the on-call number. My spouse was eventually taken into the hospice. The on-call nurse, from the CNS Bunbury service, finally called me back approximately 1.5 hours after I first called them, then sent me a text message stating that they had fallen asleep and then the on-call phone was knocked onto silent.

I feel this is extremely unprofessional and again caused undue stress and discomfort for my spouse. All nurses who are on-call should be able to be contacted during their on-call shift just as we would expect fire fighters, police and ambulance drivers to answer calls while on-call. We understand that nurses are human, accidents do happen but to ensure these types of preventable accidents does not occur again I would suggest having a back-up phone number that families can call and extra training to ensure all nurses understand their professional requirements.

My spouse was again stabilised and was able to return home with the CADD pump. Only 1 nurse in the employ of the service knew how to operate the pump, therefore when untrained nurses came out to change the pump, they arrived with written instructions on how to change the pump. I could have done this myself. In my opinion, the Community Palliative Care Service needs to ensure all staff who are expected to work with CADD pumps are trained professionally and not relying on written notes. Imagine the consequences if these instructions were wrong or lost and someone just guessed how to change the pump. The CADD pump needed to be changed every 4 days which was much better as it gave our family a chance to be normal without the restriction of having to be home for the community nurse visits. My spouse had a bit more freedom to move around with only 1 pump. I believe the government should invest more in these pumps, as I feel it would reduce the amount of time the nurses need to be in your home.

I really thought that palliative care was supposed to give people, especially in the community, quality of life and up hold dignity and respect. I believe this service should be given additional training especially around CADD pumps and be educated that they don't know everything - listen to their relatives get informed about Graft verus host disease as more people are having bone marrow transplant and not everyone will fit in the same box.

I believe Palliative Care has been given all this additional funding, but isn’t being used for education and putting the right people into these roles - where is the compassion and empathy gone – I believe WACHS SW needs to take a good hard look as to where this service is headed. I don't understand why additional staff is required for the regional team when I feel more nurses are needed on the ground.

My spouse passed away recently in the SJOG hospice. They finally got some peace and dignity from Dr Carolyn and the SJOG staff. The Bunbury Community Palliative Care service has not contacted us to offer any bereavement support. Isn’t this one of the national standards/benchmark for palliative care?

On a positive note the Allied health services at Bunbury hospital, OT, Social worker and physiotherapy are exceptional, we never went without equipment, Adina (OT) has been amazing, as with Melissa (Social Worker) and Jennifer and Alison (Physio).