"Mum's care at the end of her life"

When I found out my mum was dying, every moment spent together really mattered for both of us and my family. From the minute we were told this heartbreaking news, the district nursing team from Nottinghamshire Healthcare Trust (Borough of Broxtowe Community) started to visit and it felt like a nightmare.

Nurses would sometimes just turn up without warning to check on mum and would just walk into our home, look at mum, and walk out again, or I would call them because mum was in pain and then they would come to provide medication. Sometimes medication wouldn't be administered because a nurse couldn't determine if mum was feeling sick or in pain and so they would just leave. Within 10 minutes, I had to call them back again.

I had to fetch and chase up the anticipatory medicines with the GP and the pharmacist, which often meant I was away from mum, when every moment of us being together mattered. Also, the nurses didn't work together with the staff from the care agency and my role as mum's unpaid and main carer, wasn't recognised or valued.

At one point, mum was in so much pain that I contacted her Parkinson's consultant at the Queens Medical Centre. They visited mum and spoke with me. The consultant could see my mum was in pain and that my mum's life was nearing the end and so they increased the morphine dosage and regularity. A syringe driver was put in and mum died peacefully at home, which was heartbreaking but a relief. After the day mum died, I have never spoken to a nurse from the community team since and I feel lost and all alone.

In my opinion, more needs to be done to improve the end of life care currently provided by the Notts Healthcare Trust and nurses need to gain knowledge and confidence in providing person-centred care and identifying and valuing family members who are carers. Anticipatory medicines should be put in place and delivered by the nurses and family members need to be listened to and their comments understood.

I knew my mum better than anyone and because she and I were ignored meant my mum suffered 5 weeks of pain, stiffness, aching, burning, sickness, anxiety and constant worry. Every moment mattered to me and mum and we needed practical support, empathy and compassion, which we never received. My mum wanted to die at home surrounded by the people and things she loved but she shouldn't have had to suffer to do this.

Every moment mattered to us.

Staff skills