“Perhaps there’s a need for people to listen more”

By Dori-Anne Finlay

Dori-Anne looked after her daughter, who had late-stage breast cancer, for four years, until she died in 2013. Last year, she took part in the Palliative and end of life care Priority Setting Partnership.
Led by Marie Curie, the partnership was set up to identify what patients, carers and healthcare professionals felt were the 10 most important unanswered research questions about palliative and end of life care. The questions are designed to help Marie Curie and other organisations prioritise their future research.

Dori-Anne is also a volunteer with Cancer Research Consumer Forum at Queen’s University, Belfast.

Dori-Anne FinlayMy daughter Belinda was given three months to live when she was diagnosed with stage III breast cancer. In the end, she lived for another four years.

She died in her sleep peacefully, with her sister, cat and dog by her side. It was just the way she had wanted it. Although I wasn’t next to her, it was comforting for me to know that she had her last wish.

I think Belinda was looked after really well at home. I was fortunate to be there to care for her, and we had support from different care professionals who were very helpful.

As we enjoyed a good rapport, I was caring for my daughter the way she wanted to be cared for. I think this was really important - for her, and for me.

What I went through looking after my daughter


I joined Marie Curie’s priority setting workshop to share my experience of caring for my daughter.

There were a few things that didn’t go so well but in the end, my daughter got her wish of dying at home with those that matter to her. I have heard and seen situations when this wasn’t the case. I wanted to find out what the general consensus is for people going through a similar situation as me.

In my daughter’s case, I felt that there was a big gap between the GP and hospital services, particularly around the sharing of information.

When my daughter found a lump under her arm, she went to see her GP who told her she would be referred to the hospital. But three weeks later, and with the lump growing twice the size it was, we were still waiting for the hospital appointment. We found out that her GP had forgotten to send the referral so, not wanting to wait much longer, I paid for my daughter to see a private consultant. We were told on the same day that she had stage III breast cancer and only three months to live.

Belinda expressed her wish to be at home when she dies, so when she was told that her treatment was finished and they had done all that they could, she was discharged from hospital. However, the care she received after her discharge home was lacking  ̶  no one had explained to us about the care she would get at home or how we might deal with the difficulty she was having with breathing and eating. It felt disjointed to me.

Towards the end of her life, my daughter was being triaged and three different areas of care staff got involved. She became very distressed at her loss of control over the care she was getting. At one point, I had to step in and advise the care professional who was ‘ticking the boxes’ that it was not an appropriate time to talk to my daughter as she was having breathing difficulties.

Getting the priorities right


At the Marie Curie priority setting workshop, I spoke to other carers and we agreed that it is really important for professionals to get to know the person who’s ill as an individual  ̶  what they are like, what their situation is  ̶  and not just as a patient.

As I was spending so much time with my daughter, caring for her, I was observant of subtle changes in her condition, especially when things were getting worse.

At times, I felt that some professionals didn’t take what I have to say about my daughter’s condition on board, so perhaps there’s a need for people to listen more.

I would certainly like to see more professionals, from consultants to nursing staff, listen to patients and their carers more, so that there’s more of a partnership and connection between them.

 

Marie Curie has published a new report with results from its 18-month consultation project involving more than 1,400 people including current and former carers, and health and social care professionals. The report, Palliative and end of life care Priority Setting Partnership, highlights the top areas in need of research funding including better out-of-hours care, access to services no matter where one lives, advance care planning and support for carers.