Feeling bullied by health professionals

[MrsCautious]

Does anyone have advice for me about dealing with the huge range of health professionals who seem to take great delight in telling me that I can no longer make decisions for my mum every time I ask them a question? I have lived with and cared for mum for 9 years and I'm distraught that she is in a CH (hospital SW decision). We managed really well until May this year but since then she's had 2 infections and a fall that put her in hospital. The hospital stay was horrendous. By the end of 3 weeks she was completely unrecognisable as my mum and she was having screaming fits and all sorts of behavioural problems. She is in a NH now and has calmed down but she is just not the same person.
Last week mum scrambled out of her bed (over the bed rails) at the NH (forgetting that she's not mobile) and so I got called to the hospital in the middle of the night. She was discharged after some X-rays but I've since been told that she has a fracture (that they missed last week) and has to go back into the hospital tomorrow for an orthopaedic appointment. That's fine but they've already told me that they won't be able to treat her because she has osteoporosis and they can't 'pin' the bone back together. So I asked if it was sensible for them to insist on mum coming in when she's immobile, she has mixed type D, she's doubly incontinent and she's probably going to sit there for hours in a wheelchair only to be told that they can't do anything for her. It seems cruel to me and so I asked if there was any alternative. Immediately they accused me of withholding treatment and said that it's not my decision because I don't have 'health and welfare' POA so I have to take her in tomorrow. Of course, I wasn't trying to withhold anything I was just trying to apply some common sense to a potentially distressing trip for mum. I don't have a car so it involves time off work, wheelchair taxis and me managing on my own because there's nobody free to accompany her from the CH.
I have POA for property and affairs but not health and welfare and I'm wondering about applying to be her deputy just so that people will have to talk to me. Would it help at all? What are other people's experiences?
I just feel totally ignored and frequently bullied by health professionals when all I want to do is have a brief discussion and ask questions about decisions that are being made. I cry all the time, my husband is at the end of his tether and mum blames me for everything on the very rare occasions when she can remember who I am. I just wish I had more confidence about my right to be kept informed as mum's next of kin and former carer.
Sorry this is a really long rambling thread but I know there's lots of people out there who will understand. This forum is great although I generally sob my way through every thread that applies to my situation. It all seems so hopeless.

 

[Soobee]

I am sorry you're going through this. It doesn't sound like people are being very helpful or understanding.

I can't really give you any advice because I didn't experience that situation at all - I was making health decisions for my mum with just finance POA and they were not challenged like yours have been. I think perhaps that in the last two years staff have had to be more careful.

These people feel they are also acting in your mum's best interest, so it's best to find a way to work with them somehow. I hope that the visit tomorrow is helpful to your mum and that she recovers well.

 

[love.dad.but..]

Am so sorry that you feel upset and helpless. I have poa for health also, this helped I feel when dad had to have an emergency hernia op last year although the surgical team were concerned about his post op risks they eventually agreed with me that it was about taking a risk with his heart issues as dementia associated complications will get him in the end and getting dad pain free and improving things for atm was crucial. Dad is very medical procedure frightened and phobic even being weighed, recently even with sedation in a and e had to hold him down for nasty head injury stitching otherwise would have been general anaesthetic, the a and e consultant also very helpful. In view of dads lack of understanding of procedures so for instance trying to plaster a limb would be very very difficult without sedation I dread any possible hospital stays and unless absolutely necessary will not go with interventions but both occasions gave me the chance to talk about the health attorney issue with consultants..it gives you a bit extra in terms of seeing records and speaking on behalf of the donor although both said next of kin views were also held highly but ultimately it can be over ridden if sound medical advice in the patient's best interests were contrary. Dads nursing home can take him to end of life and we have already discussed in what circumstances hospital is unavoidable, we also have dnr in place knowing that is what he wanted in certain circumstances but yes, I would say if you can still get health poa then get it.

 

[Beate]

It's almost impossible to get a deputyship for health & welfare I am afraid, though you can try.

I would contact PALS and complain about how you are being treated just for questioning the wisdom of attending appointments that most likely won't lead to treatment. You could also say that you consider yourself next of kin, you're a direct blood relative and you wish your role in her care to be taken seriously.

Good luck.

 

[Beetroot]

Sometimes I think professionals think they're getting into an argument so adopt "attack the best means of defence" mode, but you aren't attacking them at all and they haven't twigged that. You need to tell them what you've told us, "Of course, I wasn't trying to withhold anything I was just trying to apply some common sense to a potentially distressing trip for mum. Tell them she's your mum and you love her so of course you have her best interests at heart, but as Beate says, do it through PALs.

 

[nitram]

Agree that H&W deputy is very difficult to obtain , the COP seem to prefer applications for individual events, at a cost and time delay!

Although I had H&W LPA I never mentioned this and had no problems, I kept it in reserve as a trump card.

I agree that contacting PALS is a good idea.

Regarding the care home, they have contracted to provide care, I would consider that providing an escort to attend a medical appointment is part of that care - but read the contract.

Also I would consider leaving a PWD with limited mobility and osteoporosis in a bed with rails raised is unacceptable. The bed should have been lowered, placed against a wall with the rails lowered and an alarmed bump mattress placed on the non wall side.

 

[MrsCautious]

Sometimes I think professionals think they're getting into an argument so adopt "attack the best means of defence" mode, but you aren't attacking them at all and they haven't twigged that. You need to tell them what you've told us, "Of course, I wasn't trying to withhold anything I was just trying to apply some common sense to a potentially distressing trip for mum. Tell them she's your mum and you love her so of course you have her best interests at heart, but as Beate says, do it through PALs.

I think you are absolutely right. It's almost as if people expect confrontation when all I want is what's best for mum. Sadly the PALS number at my local hospital has been rebranded as the complaints service and the email address is even complaints@xxxxxxx which makes it sound really negative. I will try phoning and see what happens........

 

[MrsCautious]

Agree that H&W deputy is very difficult to obtain , the COP seem to prefer applications for individual events, at a cost and time delay!

Although I had H&W LPA I never mentioned this and had no problems, I kept it in reserve as a trump card.

I agree that contacting PALS is a good idea.

Regarding the care home, they have contracted to provide care, I would consider that providing an escort to attend a medical appointment is part of that care - but read the contract.

Also I would consider leaving a PWD with limited mobility and osteoporosis in a bed with rails raised is unacceptable. The bed should have been lowered, placed against a wall with the rails lowered and an alarmed bump mattress placed on the non wall side.

To be fair, she had not previously shown any signs of wanting to mobilise and it surprised everyone. As a consequence, the rails have been removed, the 'Falls Clinic' consulted and she now has crash mats and sensors everywhere.

 

[nitram]

Good that the CH are taking appropriate measures, some homes don't either understand this or have the facilities.

 

[Beetroot]

I think you are absolutely right. It's almost as if people expect confrontation when all I want is what's best for mum. Sadly the PALS number at my local hospital has been rebranded as the complaints service and the email address is even complaints@xxxxxxx which makes it sound really negative. I will try phoning and see what happens........

Good luck.

 

[Tara62]

said that it's not my decision because I don't have 'health and welfare' POA so I have to take her in tomorrow. Of course, I wasn't trying to withhold anything I was just trying to apply some common sense to a potentially distressing trip for mum. I don't have a car so it involves time off work, wheelchair taxis and me managing on my own because there's nobody free to accompany her from the CH

I think in that situation, I would have said that it was impossible, because I couldn't take time off work - there wouldn't have been much they could have said to a flat statement that something was impossible for you (and I have to say, it sounds so difficult for you that it's close to being impossible).

 

[care2share]

Does anyone have advice for me about dealing with the huge range of health professionals who seem to take great delight in telling me that I can no longer make decisions for my mum every time I ask them a question? I have lived with and cared for mum for 9 years and I'm distraught that she is in a CH (hospital SW decision). We managed really well until May this year but since then she's had 2 infections and a fall that put her in hospital. The hospital stay was horrendous. By the end of 3 weeks she was completely unrecognisable as my mum and she was having screaming fits and all sorts of behavioural problems. She is in a NH now and has calmed down but she is just not the same person.
Last week mum scrambled out of her bed (over the bed rails) at the NH (forgetting that she's not mobile) and so I got called to the hospital in the middle of the night. She was discharged after some X-rays but I've since been told that she has a fracture (that they missed last week) and has to go back into the hospital tomorrow for an orthopaedic appointment. That's fine but they've already told me that they won't be able to treat her because she has osteoporosis and they can't 'pin' the bone back together. So I asked if it was sensible for them to insist on mum coming in when she's immobile, she has mixed type D, she's doubly incontinent and she's probably going to sit there for hours in a wheelchair only to be told that they can't do anything for her. It seems cruel to me and so I asked if there was any alternative. Immediately they accused me of withholding treatment and said that it's not my decision because I don't have 'health and welfare' POA so I have to take her in tomorrow. Of course, I wasn't trying to withhold anything I was just trying to apply some common sense to a potentially distressing trip for mum. I don't have a car so it involves time off work, wheelchair taxis and me managing on my own because there's nobody free to accompany her from the CH.
I have POA for property and affairs but not health and welfare and I'm wondering about applying to be her deputy just so that people will have to talk to me. Would it help at all? What are other people's experiences?
I just feel totally ignored and frequently bullied by health professionals when all I want to do is have a brief discussion and ask questions about decisions that are being made. I cry all the time, my husband is at the end of his tether and mum blames me for everything on the very rare occasions when she can remember who I am. I just wish I had more confidence about my right to be kept informed as mum's next of kin and former carer.
Sorry this is a really long rambling thread but I know there's lots of people out there who will understand. This forum is great although I generally sob my way through every thread that applies to my situation. It all seems so hopeless.

Hello Mrs C, I am very sorry you are going through this horrific experience. All the years you have looked after someone are wiped out in seconds without H&W LPA. Personally, not pursuing the matter of POA has been one of my biggest regrets. Mum always thought it was too soon and then dementia came rather suddenly. Unfortunately, I regret to say, it is only the tip of the iceberg of what is to come post Best Interests decision originally made by the hospital SW at the outset. I dare say your Mum is already in her NH deprived of her liberty whether it is keeping her safe or not, and possibly not by the sound of it. With regard to deputy for H&W, I spoke some time ago with the COP and was advised it uncommon to be appointed but one in ten applications are successful. This amazed me as I imagined it was so rare that it was hardly ever heard of. I realize at the same time this means a 90 percent chance of failure but hey, where there's life there's hope. I believe it is only given when there is no other person able to make the decisions and when there are possibly many decision that may need making in quick succession where it would be difficult to keep referring back to the Court and perhaps where it could be said those currently making decisions are not making wise decisions. I'm sure somebody here will have a first hand knowledge after going ahead with it. I didn't.
I hope that the appointment at the hospital has an unexpected good outcome and that Mum does in some way benefit from even if that does not seem possible right now. I wish you and Mum good luck. Do keep posting and let us know how it goes. Many hugs.

 

[canary]

Please be aware that applying for CoP H&W will cost £400 just for the court judgement and this will have to be paid for even if you dont get it.

I have CoP deputyship for finances, but not H&W. It has not caused any problems. My views have been considered at Best Interesting meetings and in difficult health decisions - mum had a stroke recently and it was decided not to do any surgery, or even do a doppler scan as this would not be in her best interest. Conversely, having H&W POA does not automatically give you the right to enforce H&W decisions.

I wonder whether you are so worried that you are coming over as defensive and/or aggressive - and perhaps you dont trust the professionals either and they are aware of it? Sweetie, you need to work with the professionals, not fight against them. Do you feel perhaps that it is the hospital and NHs fault that your mum is the way she is now? Infections and fractures are renown for progressing dementia and I think that what you are looking at is, in fact, progression of the dementia. It is very hard and very upsetting when you are faced with this, but, unfortunately, dementia is a progressive disease. Im glad that she is settling in the NH.

 

[cragmaid]

Is it you or the CH who has to take Mum for this appointment? If it's you, ring them and say she's not well and you'll make another appointment when she's feeling better....( not). If it's the CH I would speak with the Senior Carer or the Manager and say that you don't want Mum to be put through pain and distress, so how do they suggest they handle the problem?

 

[MrsCautious]

Well, I took mum for the appointment and I coped. A lot of the hospital staff were really kind and thoughtful and there seemed to be much more awareness of how a noisy hospital environment might upset mum. She was very stressed in X ray and started to cry after we had been in the hospital for about 3 hours because she was so tired and fed up but it could have been a lot worse. Wheelchair taxis are so much better than hospital transport too.

Thanks Canary for an interesting post. I don't think I come over as defensive, most people say that I am too nice! I did have a bad experience with the first SW allocated by the hospital who started the best interests meeting by quoting the MH Act at me. I thought it was inappropriate especially as she had forgotten to invite the person who had assessed mum's capacity. I waited until the SW went on holiday and then asked for a replacement SW which turned out to be a good decision I think Beetroot is correct and sometimes the health professionals on the 'front line' are expecting opposition which makes them behave in a slightly bossy way.

Thank you to everyone who has posted, I really appreciate that you all took the time to respond to my ramblings

 

[care2share]

Well, I took mum for the appointment and I coped. A lot of the hospital staff were really kind and thoughtful and there seemed to be much more awareness of how a noisy hospital environment might upset mum. She was very stressed in X ray and started to cry after we had been in the hospital for about 3 hours because she was so tired and fed up but it could have been a lot worse. Wheelchair taxis are so much better than hospital transport too.

Thanks Canary for an interesting post. I don't think I come over as defensive, most people say that I am too nice! I did have a bad experience with the first SW allocated by the hospital who started the best interests meeting by quoting the MH Act at me. I thought it was inappropriate especially as she had forgotten to invite the person who had assessed mum's capacity. I waited until the SW went on holiday and then asked for a replacement SW which turned out to be a good decision I think Beetroot is correct and sometimes the health professionals on the 'front line' are expecting opposition which makes them behave in a slightly bossy way.

Thank you to everyone who has posted, I really appreciate that you all took the time to respond to my ramblings

Hello MrsC,
What was the outcome of the appointment with regard to treatment?

 

[MrsCautious]

Hello MrsC,
What was the outcome of the appointment with regard to treatment?

As expected, the Consultant confirmed the presence of the fracture and said that he couldn't do anything. It would apparently respond well to surgery in someone younger and fitter. Mum has been given a simple foam/velcro support for her leg to help support it while it 'heals' naturally. Was it a waste of time? Yes, but we coped.

We have to go back in 3 weeks for a 'review' (more stress for mum, time off work for me, etc) and unfortunately the appointment is at a time of day when all the taxis are booked by the Local Council for school transport. I phoned the hospital and explained this to them but they said that I couldn't change the appointment. Feeling a bit frustrated and upset but I'm trying hard to be tolerant of the hospital who are just doing their job.

 

[sleepless]

That seems harsh on their part, Mrs. Cautious.
I managed to change an appointment from morning to afternoon at a hospital clinic.
At first I was told it wasn't possible, as the Consultant saw ongoing referrals in the morning (and OH is in this category) and only new referrals in the afternoon.
I asked the person on the phone if I could speak to her superior -- she put me on hold, came back on and said we could go in the afternoon.
We did this, and the sky didn't fall down. Sometimes they are just unwilling to even try to help, which is so unfair to carers of people with dementia.
I do hope your mum's leg heals well.

 

[MrsCautious]

That seems harsh on their part, Mrs. Cautious.
I managed to change an appointment from morning to afternoon at a hospital clinic.
At first I was told it wasn't possible, as the Consultant saw ongoing referrals in the morning (and OH is in this category) and only new referrals in the afternoon.
I asked the person on the phone if I could speak to her superior -- she put me on hold, came back on and said we could go in the afternoon.
We did this, and the sky didn't fall down. Sometimes they are just unwilling to even try to help, which is so unfair to carers of people with dementia.
I do hope your mum's leg heals well.

Thanks for your good wishes Sleepless. I've tried phoning twice to change the appointment but I'm now being told that this particular clinic is only held in the afternoon and there really isn't anything that can be done.

Mum and I will manage somehow. I noticed that the hospital has an 'adult needs' team and I thought I might try phoning them to see if they can help. I'm clutching at straws but it's not in my nature to give up.

 

[sleepless]

Just a thought, might not be an option, but could you take mum earlier (in order to bypass the school run taxi issue) and have a snack and a cuppa in the hospital cafe while you wait for the clinic to open?

I've not come across 'adult needs' but is there a PALS office in the hospital who may be able to help?