care agencies wanting to call 999 despite me saying no...

happyzenith

I had been working with a care agency since last year. I made it very clear to the agency and each of the carers when they started working with me that I did not want them to call 999 under any circumstances. I had in place an ADRT (advance decision or living will), ReSPECT form and advance statement stating this when I started working with the agency. I received my LPA document for Health and Welfare at the end of the year too.

I have a medical condition which means I can fall to the floor, amongst other symptoms. A few weeks ago I hit my head on the floor and a carer did not call an ambulance, in line with what I said to her at the time, twice.

A few days later at a meeting a manager said “they have to call 999 as they have a duty of care which trumps my ADRT, LPA document, ReSPECT form etc.”. She also stated that they would have to call 999 even if I disagreed or the people named in my LPA document said no on my behalf in line with what I would want to happen.

She said that they could only continue caring for me if I agreed for them to call paramedics if needed and stated some scenarios. Due to my medical conditions this would mean they could be calling 999 on average once a day.

I don’t want to have carers who could call 999, because I’ve repeatedly said that I don’t want this to happen and have legal documents in place saying the same thing.

Has anyone else had experiences of this happening before with care agencies?

Do you have any advice?

Thanks!

happyzenith

I'm trying to find one... I just haven't found one yet.

Once my medical conditions had been (re)diagnosed I've never actually needed any treatment in hospital. Bizarre as it sounds my worst injury has been an narrow line of carpet burn ... and that is since 2020.

I don't need to be assessed when I'm having symptoms as these are perfectly normal for me and I've been told that on repeat by specialist medical staff etc. I can say no to being assessed myself, if I'm not having symptoms, but medical staff usually do not listen to me, my parents who have Lasting Power of Attorney (and live 10 minutes away!) and ignore my medical legal documents.

I would be terrified but would say okay to carers calling 999 if paramedics would accept my right to refuse assessment or treatment, but they don't. My symptoms also get significantly worse due to me panicking if I'm dealing with NHS staff, even those who I know really well.

It also doesn't seem fair on the paramedics, or people who actually do need emergency treatment, as I know this could happen most days!

Any ideas?

Kimmy87

Health and welfare LPA can only be enacted and used when the donor (in this case OP) has lost mental capacity. 
So in this case it's my opinion that mentions of LPA are irrelevant. 

Hannah_Alumni

@happyzenith I echo many here that it sounds like such a complex situation. 

If they are saying they need to contact the ambulance service, could a compromise be that they ring 111? I wonder if that would meet their safeguarding needs and respect your wishes? 

happyzenith

@Purrrrrrr I just fall and have other symptoms that I have no control over, but (at the moment) they only last for a few minutes at the most. I never lose consciousness. Usually I fall to the floor and then almost immediately get up again. There is treatment, I’m on waiting lists, but it’s not happening yet.

@Kimmy87 You’re right, my LPA isn’t relevant unless, due to my symptoms, I can’t physically move or say anything. That does happen, but it’s usually for seconds or minutes. Again, I never lose consciousness, it’s just that I can’t respond. It’s basically there to protect me in the future, if needed. It just seems strange to me that I have one to protect me from being unnecessarily assessed by paramedics or taken to hospital, but the agency won’t agree to let my parents make a decision on my behalf which is the whole point of the document. Argh!

@Stormy I’m in England. And thanks for pointing that out to me.

@Hannah_Scope I could possibly cope with them calling 111. The only problem is that 111 won’t have heard of my main medical condition and have previously overreacted. They have also sent an ambulance before when I asked them not to, because it would put their staff at risk of catching Covid. I was fine apart from that ... and the shock of that happening has put me off calling 111. I'll have a think.

Any other ideas?

Sandy_123

I agree with the agency that they have a duty of care, if something bad happens and they didn't act on it, it would be them in the firing line. Calling the ambulance protects them.
You have the right to refuse paramedics treatment and the right to refuse to be taken to hospital. 

happyzenith

@Sandy_123 Surely there must be a way around this? It’s going to cause me to have worse symptoms unnecessarily probably about once a day, if not more often. I didn’t realise having a care agency work with me would mean that they should call paramedics potentially every time I have symptoms. I wish someone had told me before starting this process as I would never have started it.

Unfortunately, the paramedics here have only once not assessed me when I asked them not to. One other time they didn’t take me to hospital anyway when I refused to go with them. They have regularly threatened me with calling the police and once have called them so that they could stop my Dad from caring for me and then assess me against my wishes, despite neither of us doing anything wrong at all. I was just having known neurological symptoms which I have no control over.

surfygoose

I believe that care companies and ambulance, police and mental health services all have certain responsibilities that can override people’s own wishes. In certain circumstances they do have to follow their procedures and assess people or give treatments if they believe it is for safety or best interests. My parents have power of attorney for me. I can agree to some things myself and understood letting them have power of attorney so it didn’t need to go through the court of protection. If it’s a decision I can make myself then carers let me choose and if it’s something I don’t have capacity for then my parents get to make the decision but my care home provider has duty of care to take me to hospital for certain things and they do have to be able to cover themselves and show they did their best to keep me safe. Even if mum and dad said they think I will be ok sometimes professionals opinions will override. It’s the same like if it were a mental health problem and someone gets sectioned then the doctors get to be in charge. In my experience people have generally done things for me to
check I’m safe like if I’ve had a seizure or had a meltdown because of my autism. I’m sorry you aren’t finding your carer’s response to be appropriate to your situation. I think if there is any possibility of fighting it then you would have to go much higher up to address it and with backing from social services and medical professionals. The carers themselves or even local management won’t have the power to change things because they will have to follow the rules of the company.

happyzenith

@surfygoose This is what I find very hard. I’ve always had capacity (apart from one neurological condition and they should wait for that to stop before assessing capacity), and I can remember everything that happens and make a decision, I just can’t communicate it for up to a few minutes when I can’t respond. Then I can communicate what I would like to do every time. It always shocks them at that point that I can repeat what they said. Medical professionals who don’t know me (and usually are having to google my medical conditions or phone others for advice!) are not listening to me, my parents or what the doctors treating me have written that will help. Their advice is basically medical professionals need to calm down as my symptoms are not at all serious but look like they are, not take me to hospital because it isn’t necessary and leave me with someone else just in case I feel traumatised by what has been said or done by paramedics.

Two out of three specialists working with me and my GP know me know me very well and would be able to write to a care agency and social services accurately. I plan to ask them to do that very soon, but thank you for suggesting it.

I'm glad that you feel that staff have been working appropriately previously.

@Purrrrrrr Thanks for the reassurance. I tend to end up with paramedics within 20 minutes as they class it as usually a C1 or C2 call. Most of the time people who don’t know me call paramedics and they refuse to pass over the phone (even to someone else) or end the call when I’ve completely recovered. Quite often they have lied about what was actually happening. I’ve often had people saying that I’m not breathing, which was completely untrue as I was sitting up chatting to them and they said “well, at least they’ll get here more quickly”. The main problem at the moment is even if I’ve completely recovered the agency may call paramedics … it’s completely out of proportion to my symptoms. I don't think they would let me cancel the call as they would be making it against my wishes, but I can ask. I don't feel comfortable just walking off from them etc as I already feel like they are wasting precious paramedic resources.

I’ve been trying to get a PA instead for over 17 months. It worked for a few months recently, then they had to stop working with me unfortunately. We had agreed that they would never call 999 and there would be no action taken against them. I would prefer a PA.

happyzenith

@surfygoose This is what I find very hard. I’ve always had capacity (apart from one neurological condition and they should wait for that to stop before assessing capacity), and I can remember everything that happens and make a decision, I just can’t communicate it for up to a few minutes when I can’t respond. Then I can communicate what I would like to do every time. It always shocks them at that point that I can repeat what they said. Medical professionals who don’t know me (and usually are having to google my medical conditions or phone others for advice!) are not listening to me, my parents or what the doctors treating me have written that will help. Their advice is basically medical professionals need to calm down as my symptoms are not at all serious but look like they are, not take me to hospital because it isn’t necessary and leave me with someone else just in case I feel traumatised by what has been said or done by paramedics.

Two out of three specialists working with me and my GP know me know me very well and would be able to write to a care agency and social services accurately. I plan to ask them to do that very soon, but thank you for suggesting it.

I'm glad that you feel that staff have been working appropriately previously.

@Purrrrrrr Thanks for the reassurance. I tend to end up with paramedics within 20 minutes as they class it as usually a C1 or C2 call. Most of the time people who don’t know me call paramedics and they refuse to pass over the phone (even to someone else) or end the call when I’ve completely recovered. Quite often they have lied about what was actually happening. I’ve often had people saying that I’m not breathing, which was completely untrue as I was sitting up chatting to them and they said “well, at least they’ll get here more quickly”. The main problem at the moment is even if I’ve completely recovered the agency may call paramedics … it’s completely out of proportion to my symptoms. I don't think they would let me cancel the call as they would be making it against my wishes, but I can ask. I don't feel comfortable just walking off from them etc as I already feel like they are wasting precious paramedic resources.

I’ve been trying to get a PA instead for over 17 months. It worked for a few months recently, then they had to stop working with me unfortunately. We had agreed that they would never call 999 and there would be no action taken against them. I would prefer a PA.

surfygoose

Keep us updated how you get on. It does sound a very difficult situation and sorry I probably wasn’t really very helpful because I think my situation has been different when carers calling ambulance for me. It must be really frustrating. I hope the specialists and your GP are able to do something writing to the care agency for you or that you can get a PA again instead.

happyzenith

Oops, I posted twice before ...

@surfygoose I will keep you all updated. It's good to talk about it, even if everyone's experiences and medical conditions etc. are different. To be honest, I think your post helped me a lot when I read it - along with what everyone else has written above too.

I had a useful meeting about this yesterday. I wrote down and talked about loads and loads of suggestions to move the situation forwards. I have asked for another meeting soon with the care agency.

happyzenith

I met the registered manager, my social worker and my advocate remotely yesterday and both of my parents were here too. It actually didn’t take long for the registered manager to agree to honour my ADRT and contact my parents if they need to like they were previously without calling 999. We’ve agreed to review this regularly, firstly in about six weeks time.

I’m very happy to say I’ve now asked to restart my care calls. Yay!

surfygoose

That’s brilliant news. I’m so glad you were listened to.

Alex_Alumni

Thanks for the update @happyzenith that's great to hear!