Norfolk campaigner says end of life care journey is only just beginning

Denise Charleworth-Smith.

Denise Charleworth-Smith. - Credit: Archant

The journey to improve end of life care for the dying is only just beginning, the Norfolk woman behind an independent report into the controversial Liverpool Care Pathway (LCP) said last night.

Denise Charlesworth-Smith, who co-authored a review after becoming a patient champion following the death of her father, urged the government to take action on its findings straight away.

The LCP recommends that in some circumstances doctors withdraw treatment, food and water from sedated patients in their final days, but the review found doctors had used the regime 'as an excuse for poor-quality care' and recommended that it should be axed.

Medics have argued that the pathway has 'transformed' end-of-life care, saying it can offer peaceful, pain-free deaths when used properly.

But while the review found that the LCP could offer 'high-quality and compassionate care', it said there were 'too many cases' where it was 'incorrectly implemented'.

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The review panel heard evidence from patients, families and health professionals and concluded that there were 'too many cases where the LCP was simply being used as a 'tick box' exercise.'

Baroness Neuberger, who co-chaired the panel said that hydration problems were the biggest issue raised by people who gave evidence to the review.

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Some patients' families were even shouted at by nurses for giving them water, she said.

Mrs Charlesworth-Smith, whose father was put on the LCP before he died in 2012, said: 'When I saw my Dad we had some sponges to give him to drink his tea. We weren't allow to give him tea. He was sucking on them like a newborn baby and it is something that will stick in my memory forever. It was horrendous to see that he was literally dying of thirst.'

She said there had been no communication with her and her family about what was happening.

She urged NHS England to take notice of the 44 recommendations made by the review.

'If it sits over the summer and gathers and dust they will have a very angry person on their doorstep saying 'aren't you going to do something with it?',' she said. 'We need to embrace it, pick it up and do something with it straight away.'

She added: 'What you need to do is start looking at better end of life care and it starts from the ground level and works upwards.'

Care minister and Norfolk MP Norman Lamb put Mrs Charlesworth-Smith forward as a potential panel member, which also included other peers and clinicians, after she contacted him with her concerns about her father and the LCP.

She said: 'When I first met my panel members I thought I was going to have a huge job trying to convince them. I thought I am on a hiding to nothing. I actually thought I might have to end up writing a minority report. But when Baroness Neuberger came up to me at the end of one of the meetings and said 'Oh my god' and she was horrified, I knew I had somebody on my side. I was so moved by it, I was almost in tears.'

She said: 'You start it off and think where it is going to end. I didn't think I would get the ear of the care minister. I didn't think he would commission this report. I didn't think it would get as far as it did. I am so grateful.'

She said that the families she had spoken to did not want compensation over the way their relatives were treated.

She said: 'We basically said it was not money, just change was what we were looking for. I hope I have done something to help them get what they want to move on in life.'

Mrs Charlesworth-Smith said that the review panel had held sessions in Preston, Leeds, London and Bristol and the relatives of patients had travelled from all over the country and from other countries to be there.

'I had families who travelled all the way from East Anglia to Preston from Norfolk, from the King's Lynn area. It shows you how far people are prepared to travel.'

She said that the work of the panel would continue and she wanted to continue to hear from people about their experiences. 'I want the NHS to put it in its mandate and start now, and if they don't I will be poking them in the back. I did not spend six months of my time for them to ignore it. We need to take this seriously. They need to get their act together and their house in order. I felt I had to be part of it because I wanted to make a difference. I wanted to make a change. The number of people that contacted me that felt so sad, like I did.

She said: 'The most important thing for me is it is the start of a journey, and the start of a journey to get justice for my Dad.'

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