"Experiences of End of Life Care"

About: Hillside Nursing and Residential Home St Helena Hospice St Nicholas Hospice West Suffolk Hospital

(as a carer),

I am someone who has worked in the NHS but have sadly also had 3 different experiences of end of life care in this area. In all this time I cannot speak highly enough of the hospice movement. They have been a lifeline in every case. This was certainly the true of St Helena hospice in Colchester when my husband died 8 years ago. They allowed me to sleep by his bed, and they stabilised him for 3 weeks at the hospice and he got home which is what they wanted. We were supported by the Macmillan nurses and also the District Nurses. At that point the hospice at home service was not going, the care was not all first class, and it was hard going from being at the hospice to having to cope in the community. We were supported by district nurses and the Macmillan nurses. His pain became really bad towards the end and the day before he died the Macmillan nurse filled in forms for him to have a syringe driver. There was a mix up with the forms and this was very distressing as it delayed his pain management and it affected the last couple of days. The care from Macmillan was first class the district nurses were more inconsistent but there was one that seemed to go the extra mile and was wonderful and caring.

My second experience of someone close to me was my mother in April of this year. On this occasion she went to Hillside Nursing Home in Sudbury and I can't fault them. The GP support to the nursing home was good they came almost every time we asked for them and the district nurses also supported the situation. However it got to a point where I felt that it was time to think about end of life care and after talking to the nurse and then I talked to the GP and a referral was made to St Nicholas Hospice in Bury St Edmunds. They were wonderful and came and assessed but in the end my mother was too bad to move but the hospice were always at the end of the phone. The District Nurses were marvellous, one example was them letting me hold my mother while they tended to her so that I could help her with the pain. The hospice sent me information about help after my bereavement and the chaplain came which I really appreciated.

In August I helped my close friend with her husband. Some of the care was provided by the Palliative Care team at the West Suffolk Hospital, who were lovely and really caring. Interesting in all three cases I met the same district nurse who was exceptional both in her caring and her expertise with end of life.

My observations that come from both a personal and professional experience are the following:

With my mother it was often the case that we saw different GPs who you spent valuable time repeating the situation. I know sometimes out of hours this has to be, but it was really difficult particularly towards the end when my mum was in lots of pain.

I feel that often the right conversations about referral to hospices and specialised care don’t happen always or don’t happen at the right time. This is so important as the Macmillan care in this area is in some cases more consistent than the district nurses. This wasnt the case with my mother where both wer equally wonderful. What you always want is empathy which often comes from those people who have the experience of working with this group of patients.

I wonder whether this is sometimes because the focus is on cancer patients rather than the end of life care of the elderly.

Sometimes it is the exceptional nurse or carer that can make all the difference.

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Response from Linda Buckland, Assistant Communications Manager, West Suffolk NHS Foundation Trust

on behalf of the Palliative Care team at West Suffolk Hospital, we would like to thank you for your kind comments.

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