"End of life care in the community"

About: Dundee City Council - Home Care - Locality Teams and Housing with Care - East Marie Curie Nursing Service - Care at Home Tayside Community Services / District Nursing

(as a carer),

Myself and my family provided end of life care at home for my Dad who was 88. He had become increasingly frail - when he became bed bound blood tests revealed deranged liver function tests possibly indicating a liver tumour but by this stage it seemed academic to confirm by scan as it would have been cruel to put him through that.

The District nurses were extremely caring, supportive and responsive.

Unfortunately due to demand we had to wait about 9 days after the referral went in for social care officer support. Marie Curie overnight sitters also didn't have capacity for about 2 weeks. Consequently I was exhausted after the first week as I was in effect providing round the clock nursing assistant duties without a break - my Dad was too ill to get up and my Mum is 88 herself so was limited in what she could do.

I work in the NHS myself and ended up needing to be signed off work for 2 weeks as due to all the disturbed nights I was physically and emotionally unfit for work.

The Marie Curie service was outstanding and a godsend - but that is a charity and not NHS.

Although it was really hard work I am so glad my Dad ended his days at home, in familiar surroundings with those he loved around him but to enable more people to do this it seems that

1) social services and nursing capacity in the community needs to be greatly increased to support carers so they can get more of a break so they don't get ill themselves. End of life care at home is being promoted but needs to be supported by resources. The NHS seems to be relying on the 3rd sector - Marie Curie were absolutely fantastic but over 4 weeks they were only able to provide a few nights.

2) if I hadn't cared for my Dad he would have had to go into hospital which would have cost a lot more, even though I had to have sick leave for 2 weeks. Some large organisations provide up to a month paid carers leave to look after elderly dependants - on a similar basis to maternity/paternity leave. What is the Government's policy for NHS employees?

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