The event was very well organised, set up in the market square of the pavilion of around 25 to 30 stakeholder stalls all providing information for older people. The communications and engagement team were there to a number of issues including the community-based specialist palliative care review.
It is difficult to guesstimate how many people we spoke with, but approximately 80 to 100 people. Some of the conversations lasted only a couple minutes, while other conversations were up to 10 minutes. It is impossible to just listen to the information you want to hear, it is important to recognise and show interest in all of the feedback heard.
In these type events that are not specifically around palliative care, it is difficult to start the conversation about palliative care. However, it was possible to discuss other health-related service concerns, listen carefully and assess where palliative care had been used. Some of the stakeholders at the event, either supported carers or delivered end of life caring in the community, they provided some interesting feedback.
Patient feedback 1
My husband wanted to die at home – the decision was made and I felt agreed, it was really hard battle for my husband to come home from the Hospice back to our home. They kept trying to persuade me to let my husband pass away in the hospice, which was nice, but wasn’t his surroundings. I thought that there had to be another agenda or reason that they weren’t telling me. But I insisted and Peter was getting more and more agitated.
When it was agreed for him to be brought home, the transport said ambulance on the side, but it wasn’t. They tried to carry him into the house, he was screaming in pain, they were not paramedics and didn’t seem trained or know how to move end of life patients. I had to asked my neighbours to help carry Peter back into the house.
The palliative care team were really good and cared for Peter in a dignified way, by the end of that week he died peacefully in bed, with me sitting next to him holding his hand. It was the right way for him to die, but getting there was not very nice and I was really afraid that he would die in a place where he didn’t want to.
Patient feedback 2
I cared for my husband for 2 years for the first year to 18 months, I received very little help. My GP gave me the prescription and I got on with it. I suppose I didn’t let anyone else in, but no one informed what was out there. How would I know. My daughter pushed and pushed me to let her seek assistance or support for me. We did have carers visit but they were hardly ever the same carers. I could see my husband didn’t like them caring for him, so I just assumed that all of the caring service was the same and preferred to care for my husband myself.
In year two, my own health started to deteriorate, I happen to see another GP at the practice, when I informed of my husband’s condition, he got other services involved. The palliative district nurse came, she ordered an NHS bed – we were then offered palliative care carers who were much better than the other carers. Unfortunately, my husband died in hospital.
So yes, there does need to be a review of palliative care services, just to have been better informed by the GP would have been really helpful.
Feedback from Life Care Plus
As people accessing the service, a big part is which part of the area you live. In one part of Hillingdon, you are likely to know more about how to access palliative care, if you live in another part of the area, you are likely to know less.
The main issues for the carers are:
- Waiting for GP prescriptions, when patient is clearly in pain.
- It is so difficult to leave a patient and go to the next client when the patient is in pain.
- Prescriptions made pharmacist sometimes out of stock.
- Unsure when to call the district nurses team.
- Budget needs to be available for carers to receive further end of life training, so they can more clearly assess to see the signs.
- Line manager of live care plus - finds herself having to chase clinicians to provide the right medication.
We come across so many families who had no idea about palliative care and or how to refer. When they are referred the family has often done so much for their family member there is an immediate lack of trust and uncertainty when carers are referred.