Liverpool Care Pathway – TODAY With Matthew Gudgin

This is TODAY with Matthew Gudgin on BBC Radio Norfolk - 28 December.

It is available on BBC iPlayer here until Thursday, 3rd January 2013

Listen from 1 hour 46 mins (approx. 8 minutes long - Denise calls in)

Transcript -

Matthew:
You may remember earlier in the year, we spoke to a Norfolk woman who is now leading a national campaign for changes to how people who are dying are treated. The controversial medical plan called the Liverpool Care Pathway withdraws medical treatment and food and drink from the dying, supposedly where appropriate. But the problem is that some think their relatives have been put on the LPC too soon or unnecessarily leading to fears that some have died prematurely. Denise Charlesworth-Smith's father was admitted to hospital in January with breathing problems. He died five days later after being put on the Liverpool Care Pathway. Denise, who's from Methwold, is on the line to us now. Good morning.

Denise:
Morning, Matthew.

Matthew:
So, it's all about what happened to your dad, and this has sparked your interest and your campaigning on this issue, hasn't it?

Denise:

Yes, em, let's put it this way, em, it was something that we didn't know about. I'm now finding out a lot more about it, as to what happened and what we could have done about it had we been informed and as for me leading the campaign it was because of the lack of information which relatives get because when you're greeted with someone who is taken into hospital with something like my father had which was breathing difficulties which led to pneumonia, you're not in a fit state to actually take anything in as opposed to somebody who is a terminally ill patient who is dying of cancer and who has relatives who have been given the opportunity to say goodbye to them and understand the process of what Liverpool care Pathway is all about. Now, we knew nothing about it - it was a passing comment - and my brother and I have been saying, well we have been chatting about it recently - we thought it was a drug; we didn't realise it was something that er, you know, it was something we could have actually done something about. I em, taking, you know, the doctor to hand and saying, "Why are you withdrawing medication, why are you, you know, withdrawing fluids, why are you withdrawing this, that and the next thing?" Em, and it's something that now I do feel passionately about. Em, and like I was telling one of your reporters the other day, I've now managed to obviously get myself to Norman Lamb's round table which happened, em last month. And I'm now meeting with him next month and taking this one step further as it goes up to the House of Lords where I have been invited to speak

Matthew:
Yes, well that's an incredible step, isn't it? Norman Lamb being, of course, the North Norfolk MP and Health Minister. Em, will your message at the House of Lords be particularly on the communication front, but also will you mention what some of the campaigners,  people who're concerned about this, have also said, that, that  people, the Liverpool care pathway is being brought in too soon, and some people could live on longer?

Denise:
Exactly. Exactly right.Em, I'm actually - what I'm actually doing, I've been really privileged actually - because of what I've been doing - I've been invited by the person who developed Liverpool Care Pathway - Professor John Ellershaw - to actually meet him in the early part of the New Year, to actually discuss with him and the team exactly what was behind his thoughts when he developed the Liverpool Care Pathway and to actually discuss with him and the team some of the issues that I have actually heard from other people and also my own perspective. So, I'm hoping that, by doing this, we can raise the profile of what's gone wrong and try and put right the things that should happen to those who actually need it. Em, so, you know, I'm willing to take phone calls still from people whose relatives have been wrongly put on it, em, to add to the campaign, because at the moment there are 1,328 people who have come forward, which I'm very, very pleased about. And I am now going to be working with the National End of Life care people as well, and the Royal College of Nurses, both of whom have asked me to their conferences to actually discuss the issues that have come up. So, I'm hoping that the relatives voices will now be heard and something will happen. And this why I'm hoping to meet, well hoping, I am actually meeting Norman Lamb at the start of the new year to actually clarify exactly what it is that his review is actually doing,  because, at the moment, I'm still quite critical of what some of the people are trying to do. And I want to make sure that this actually works for everybody. I don't want it to go wrong again. I don't want to hear of other relatives who go through this.

Matthew:

You're off to Westminster on the 23rd of next month but, in the meantime, you mentioned a phone number. Is it possible for people to contact you directly? Is there a number people can ring?

Denise:

Well, they can either contact me through my Facebook page or I will leave a telephone number with your radio programme if that's okay

Matthew:

Of course...

Denise:

So that you can contact me through my mobile and er, you know, obviously if people are concerned and troubled by it and I do know there are other Norfolk families who have actually been in the press and who haven't actually contacted me yet.And I wanted to find out how they felt about it and whether or not they would be happy to put their names and their voices to the campaign. And I have to say, today has come at a very poignant moment because today would have been my dad's birthday. So, I I'm still fighting on

Matthew:

Denise Charlesworth-Smith, thankyou very much for joining us this morning.

Denise:

Thankyou, Matthew.

Matthew:

And denise's number will be on record here, so if you need to contact her, if you want to contact her, our number is 01603 617 321