Forums
Welcome to our forum, a space for our Members to engage in discussion, share information and connect with one another. To ensure productive and respectful conversations, please follow our forum guidelines detailed here.
Advocating for change?
Quote from Harriet Radermacher on 04/08/2023, 11:36 pmIt seems to me that Advance Planning is a mine field. There are a ton of different forms, some legally binding, others not. Some are kept on electronic databases, others are not, and coverage may be patchy across the UK. You may or may not need originals on your person. I've just attended the Advance Planning training which was fantastic and very informative, but it often raised more questions than answers. From what I understand, doulas try to make their own sense of the mess, desperately trying to support their clients, accepting the status quo. Have there been any efforts to advocate for change and improve the status quo? Is there a role for doulas/EoLDUK to lobby for such a change?
It seems to me that Advance Planning is a mine field. There are a ton of different forms, some legally binding, others not. Some are kept on electronic databases, others are not, and coverage may be patchy across the UK. You may or may not need originals on your person. I've just attended the Advance Planning training which was fantastic and very informative, but it often raised more questions than answers. From what I understand, doulas try to make their own sense of the mess, desperately trying to support their clients, accepting the status quo. Have there been any efforts to advocate for change and improve the status quo? Is there a role for doulas/EoLDUK to lobby for such a change?
Quote from Emily on 07/08/2023, 9:37 amHi, Harriet,
It's important to find out what is in use in your area - for instance in London, the Co-Ordinate My Care (CMC). plan has been superceeded by the Universal Care Plan (UCP), which every GP should be offering, but many have never even heard of. Sadly, it has not adopted the openness that the CMC pioneered.
https://ucp.onelondon.online/frequently-asked-questions/
Even though it is far from perfect, it's important that we encourage all our clients to get one done, as it is registered online and all NHS staff will be alerted / have access to it, including ambulance staff and A&E. I am still waiting to get someone on the 'inside' to send me a copy of the guidelines, so we can encourage our clients to make sure things that are important tot hem are included: does anybody have a contact who might be able to do this? We should be encouraging our clients to make sure their UCP (or whatever plan the NHS in their area is using) includes reference to a fuller ACP, if you've done one with them.
In the London region, the Ambulance service are training their staff to be aware of end-of-life and how it might change the status of personal choice vs. the usual priorities of critical care. It would be great to get involved in this training, if you ever get the opportunity.
Hi, Harriet,
It's important to find out what is in use in your area - for instance in London, the Co-Ordinate My Care (CMC). plan has been superceeded by the Universal Care Plan (UCP), which every GP should be offering, but many have never even heard of. Sadly, it has not adopted the openness that the CMC pioneered.
Even though it is far from perfect, it's important that we encourage all our clients to get one done, as it is registered online and all NHS staff will be alerted / have access to it, including ambulance staff and A&E. I am still waiting to get someone on the 'inside' to send me a copy of the guidelines, so we can encourage our clients to make sure things that are important tot hem are included: does anybody have a contact who might be able to do this? We should be encouraging our clients to make sure their UCP (or whatever plan the NHS in their area is using) includes reference to a fuller ACP, if you've done one with them.
In the London region, the Ambulance service are training their staff to be aware of end-of-life and how it might change the status of personal choice vs. the usual priorities of critical care. It would be great to get involved in this training, if you ever get the opportunity.
Quote from Aly Dickinson on 07/08/2023, 2:38 pmComing in again here Harriet and Emily
Totally agree there should be one NHS form in respect of medical care at EoL as at the moment we have REspect which is supposed to be universal but isn't, then there are a variety of other platforms to which Emily refers, in my neck of the woods it is a Treatment Escalation Plan referred to as a TEP. It's messy and confusing. But I am thinking that as Doulas our Advance Plans are (a) initiated by the individual and not the medics. (b) they are far wider than just care at end of life/emergency care etc and encompass for example what a person wants for their funeral, likes and dislikes etc. (c) they are personal and individualised so a person is not constrained by a form and tick boxes. On the Advance Planning Workshop template plans (samples) are provided and I always find that first the conversation is the important starting point and then letting the person see a sample plan and then in more conversation supporting them to make their own plan from there. Of course need to ensure this is logged on medical records, provided to Consultants/Doctors and others involved in care. Sorry as probably stating the bloody obvious!
Coming in again here Harriet and Emily
Totally agree there should be one NHS form in respect of medical care at EoL as at the moment we have REspect which is supposed to be universal but isn't, then there are a variety of other platforms to which Emily refers, in my neck of the woods it is a Treatment Escalation Plan referred to as a TEP. It's messy and confusing. But I am thinking that as Doulas our Advance Plans are (a) initiated by the individual and not the medics. (b) they are far wider than just care at end of life/emergency care etc and encompass for example what a person wants for their funeral, likes and dislikes etc. (c) they are personal and individualised so a person is not constrained by a form and tick boxes. On the Advance Planning Workshop template plans (samples) are provided and I always find that first the conversation is the important starting point and then letting the person see a sample plan and then in more conversation supporting them to make their own plan from there. Of course need to ensure this is logged on medical records, provided to Consultants/Doctors and others involved in care. Sorry as probably stating the bloody obvious!
Quote from Harriet Radermacher on 07/08/2023, 7:52 pmThanks Emily & Aly,
Yes, I agree, one universal form for medical care would be ideal - to complement a person-centred Advance Plan with all the other important stuff. Sounds quite simple and straight forward, but so hard to achieve in practice. I still feel like, as doulas, we're just mopping up water, rather than working out how to turn the tap off!
Thanks Emily & Aly,
Yes, I agree, one universal form for medical care would be ideal - to complement a person-centred Advance Plan with all the other important stuff. Sounds quite simple and straight forward, but so hard to achieve in practice. I still feel like, as doulas, we're just mopping up water, rather than working out how to turn the tap off!
Quote from Jane O'Riordan on 11/08/2023, 11:58 amI think Advance Planning is a mine field too and it makes me feel stressed reading the posts below. If I feel like this and have done AP workshops and written a short 'idiot proof' guide for those who don't want to think about it then what do most people think? Yes, they put their fingers in their ears and hope it will all go away! As a doula if I can just get people to start the conversation maybe that is enough?
I think Advance Planning is a mine field too and it makes me feel stressed reading the posts below. If I feel like this and have done AP workshops and written a short 'idiot proof' guide for those who don't want to think about it then what do most people think? Yes, they put their fingers in their ears and hope it will all go away! As a doula if I can just get people to start the conversation maybe that is enough?
Quote from Judy Knox on 12/08/2023, 7:49 pmComing in late to this conversation ladies, but Jane, I'd love to see your 'idiots' guide'.
As has been stated here more than once, it is indeed a minefield as there is no one size fits all.
Aly and Emily thank you for your comments, all help gratefully received!
:-)
Coming in late to this conversation ladies, but Jane, I'd love to see your 'idiots' guide'.
As has been stated here more than once, it is indeed a minefield as there is no one size fits all.
Aly and Emily thank you for your comments, all help gratefully received!
:-)
Quote from Aly Dickinson on 12/08/2023, 9:09 pmJane @jane4- and Judy @judy-knox got mixed feelings reading you posts as think it's fantastic that you're openly expressing your concerns but at the same time sad to read you see it as a minefield. But absolutely get that it can be made overcomplicated with the myriad of forms that are kicking around and different ways of coming from it by different organisations and professions. Bang on about this all the time but as Doulas I so believe that we have to get away from the thinking that it is a minefield as if that is our mindset then it's possibly going to dribble out to those we talk to about the benefits of planning for end of life? Totally agree @jane4 that some of us as Doulas will feel more comfortable with just opening up the conversation of
- describe what quality of life means for you and what does its absence look like
- what do you want
- what don't you want
- how do you want to be cared for
- where do you want to be cared for
You'll know too that I think that as End of Life Doulas we should have done our own plan for end of life so that we can be authentic if we are supporting or encouraging others to do theirs and put in writing
Would love to see the guide you have produced @jane and sounds very useful. Also to say if anyone ever wants to ask questions then if I can I will do my best to help or find out the answer. I can pick queries up from here. You'll know, too, that Nicky Donaldson is arranging a session for the SW Region and is now opening it up to Members from all Regions with Clare Fuller https://speakforme.co.uk/ who makes all of this stuff very accessible, will tailor the information to our needs as Doulas and allow plenty of space for Q&As, Hopefully this will happen in November.
Shutting up now!
Thank you everyone for making this an interesting chat so far!
Jane @jane4- and Judy @judy-knox got mixed feelings reading you posts as think it's fantastic that you're openly expressing your concerns but at the same time sad to read you see it as a minefield. But absolutely get that it can be made overcomplicated with the myriad of forms that are kicking around and different ways of coming from it by different organisations and professions. Bang on about this all the time but as Doulas I so believe that we have to get away from the thinking that it is a minefield as if that is our mindset then it's possibly going to dribble out to those we talk to about the benefits of planning for end of life? Totally agree @jane4 that some of us as Doulas will feel more comfortable with just opening up the conversation of
- describe what quality of life means for you and what does its absence look like
- what do you want
- what don't you want
- how do you want to be cared for
- where do you want to be cared for
You'll know too that I think that as End of Life Doulas we should have done our own plan for end of life so that we can be authentic if we are supporting or encouraging others to do theirs and put in writing
Would love to see the guide you have produced @jane and sounds very useful. Also to say if anyone ever wants to ask questions then if I can I will do my best to help or find out the answer. I can pick queries up from here. You'll know, too, that Nicky Donaldson is arranging a session for the SW Region and is now opening it up to Members from all Regions with Clare Fuller https://speakforme.co.uk/ who makes all of this stuff very accessible, will tailor the information to our needs as Doulas and allow plenty of space for Q&As, Hopefully this will happen in November.
Shutting up now!
Thank you everyone for making this an interesting chat so far!
Quote from Jane O'Riordan on 13/08/2023, 7:52 amGreat reply @aly. Thanks. I think the more AP's you do with people the easier it becomes. Here is the first draft from my designer of the 'idiot's guide' with my Dad in mind. I have given it to loads of friends and people who are interested. My poor suffering husband prints it out . For the doulas I have sent it to I have added the AgeUK book or the My Future Care Hand Book which is £20 but very comprehensive. MFCH is being re written. One retired doctor 'tore' mine to shreds. I probably need to follow up with those bods to see if they have actioned any of it? At least it has started a conversation. I am going to get them printed as an A5 stitched book. I think I need to add some blank pages and would like some feedback. I have attached for you to look at @aly4 @judy-knox @emilyengel13 I have got an EOLDUK stand at the Suffolk Mind Body Spirit Festival at Trinity Park 17th Sept and a TED talk slot to talk about what a doula does so I will get some for that. Also there is a new radio station here and an ex BBC presenter is interviewing me for an hour next week which is pretty cool. I will give one to him! NO-one came to our death cafe in Ipswich last week but a funeral celebrant and I will keep plugging away at that one! I love the Clare Fuller Zoom sessions/podcasts/emails. I have been in touch with Nicky about that one.
Great reply @aly. Thanks. I think the more AP's you do with people the easier it becomes. Here is the first draft from my designer of the 'idiot's guide' with my Dad in mind. I have given it to loads of friends and people who are interested. My poor suffering husband prints it out . For the doulas I have sent it to I have added the AgeUK book or the My Future Care Hand Book which is £20 but very comprehensive. MFCH is being re written. One retired doctor 'tore' mine to shreds. I probably need to follow up with those bods to see if they have actioned any of it? At least it has started a conversation. I am going to get them printed as an A5 stitched book. I think I need to add some blank pages and would like some feedback. I have attached for you to look at @aly4 @judy-knox @emilyengel13 I have got an EOLDUK stand at the Suffolk Mind Body Spirit Festival at Trinity Park 17th Sept and a TED talk slot to talk about what a doula does so I will get some for that. Also there is a new radio station here and an ex BBC presenter is interviewing me for an hour next week which is pretty cool. I will give one to him! NO-one came to our death cafe in Ipswich last week but a funeral celebrant and I will keep plugging away at that one! I love the Clare Fuller Zoom sessions/podcasts/emails. I have been in touch with Nicky about that one.
Uploaded files:- You need to login to have access to uploads.
Quote from Emily on 13/08/2023, 9:03 amJane, this is BRILLIANT!
Just one quick scan and a suggestion: add the initials ACP to Advance Care Plan, and maybe have a glossary at the end to help people decipher stuff they may be reading elsewhere.
Also, the previous discussion made me think it might be useful for us to list all the forms that are used in the different regions, so people can ask their GP / alert their GP. These are important in so far as they will be recognised and accessible to the other health service providers in the area, though they are NOT a replacement for a full ACP.
Can we do that on this forum? For those of us who get into policy development work, it's useful to know there is a choice...
Jane, this is BRILLIANT!
Just one quick scan and a suggestion: add the initials ACP to Advance Care Plan, and maybe have a glossary at the end to help people decipher stuff they may be reading elsewhere.
Also, the previous discussion made me think it might be useful for us to list all the forms that are used in the different regions, so people can ask their GP / alert their GP. These are important in so far as they will be recognised and accessible to the other health service providers in the area, though they are NOT a replacement for a full ACP.
Can we do that on this forum? For those of us who get into policy development work, it's useful to know there is a choice...