[rosie]

Is there another carer who has experienced a similar situation to mine? My 39 year old son has been sectioned three times now. I have had no contact with him for the last 3 years not for want of trying. Because he has said that he does not want information shared with me I feel completely helpless. He has been under section for the last 3 months. I am not able to speak to the Ward or his doctor and am not given any information on his treatment. I went to the hospital today to drop off his Christmas present. He was not there so I casually asked the nurse how he was doing and she replied that she could not tell me unless she had his permission. I speak to his CPN once a week and she is only able to tell me that she has seen him so at least I know he is still alive. This is all put down to Patient Confidentiality and as his mother and only Carer I have no rights at all. I find the whole situation incredibly frustrating and very upsetting. Has anyone else experienced a similar situation or can offer me any advice.

[Olivia - Rethink]

Hi Rosie,

It can be so frustrating with confidentiality issues. I don't know if you've already talked it through with our advice service, but you can contact them to get advice and information around your rights: www.rethink.org/advice

and we also have a factsheet on confidentiality which you might find helpful: http://www.rethink.o...http://www.rethink.org/document.rm?id=704

It must be so hard not being able to get to see him and I hope that with time this changes. Let us know how you are getting on here on the forum - and also you might like to see if there is a carer support group near you too: http://www.rethink.o...http://www.rethink.org/how_we_can_help/our_support_groups/search_for_groups.html

Best of wishes for Christmas.

Olivia

[orderlydisorderly]

rosie - it must be hard not having information about your son and him not wanting contact with you now.

However, confidentiality is very important and we all deserve to have privacy even from our families - sometimes especially from our families.

I'm old enough to remember when psychiatry didn't respect confidentiality with families and there were some terrible consequences for people as a result.

Although many are like you and are caring parents, some relatives are not sadly. I hope your son decides to re-establish contact with you.

[mias]

rosie, on 24 December 2011 - 08:28 PM, said:

Is there another carer who has experienced a similar situation to mine? My 39 year old son has been sectioned three times now. I have had no contact with him for the last 3 years not for want of trying. Because he has said that he does not want information shared with me I feel completely helpless. He has been under section for the last 3 months. I am not able to speak to the Ward or his doctor and am not given any information on his treatment. I went to the hospital today to drop off his Christmas present. He was not there so I casually asked the nurse how he was doing and she replied that she could not tell me unless she had his permission. I speak to his CPN once a week and she is only able to tell me that she has seen him so at least I know he is still alive. This is all put down to Patient Confidentiality and as his mother and only Carer I have no rights at all. I find the whole situation incredibly frustrating and very upsetting. Has anyone else experienced a similar situation or can offer me any advice.

I do agree with orderlydisorderly about things being confidential in most situations where adults are concerned. But, not when someone is very unwell. In these cases could they not monitor the situation very carefully and make an informed decision and each case be treated separately? Not a blanket 'we can't speak with you' rule.

It was the most awful thing not being told what was going on with my brother and if we had known more and could have least understood what the hell was happening we could have helped him more.

"I'm old enough to remember when psychiatry didn't respect confidentiality with families and there were some terrible consequences for people as a result.

Although many are like you and are caring parents, some relatives are not sadly. I hope your son decides to re-establish contact with you"

Would an uncaring parent friend or relative even bother to want to know and help? I can't think of why they would bother.

Orderly, please could you can help me understand this a little more as it is something I do struggle with to this day.

My brother was terribly muddled and psychotic, though he was trying to cope alone and expected to make decisions for himself, even when he thought helicopters were coming to get him at any moment and take him away and when in his own family home he had all the curtains closed as his house was close to a school and he worried that if people saw him looking out they would think he was a pedophile. All sorts of things like this and more that he would have tried to cope with inwardly (or yes, possibly with his health professional I suppose).

I don't mean they need to tell us all the personal things, even things like I have mentioned above and thinking about it, it could be very upsetting for a parent to find out these things along with others like they may blame their upbringing (rightly or wrongly) for their illness etc etc. All they need to do is discuss treatment and what is happening and involve their loved ones. They could at least tell her how he is doing and what they are doing to help and their plans for his recovery. That couldn't hurt could it?

[mld]

I found that when I was in hospital I had no confidentiality at all. The staff told my husband everything, which I didn't want them to do!

I do hope that your son does allow you contact soon, and can then discuss things with you on his terms,

take care,

M.

[orderlydisorderly]

'Would an uncaring parent friend or relative even bother to want to know and help?'

Yes they would want to know but not to help but to try and get their relative heavily drugged and detained if they are abusing them. Don't forget it's still true that a lot of serious crime happens in families and many children are abused. Abusers are very good at putting on an act and playing the 'caring relative' role, it's all part of the cover up. Abusers are some of the craftiest, most manipulative people around. They also want to find out what their relative has been saying about them, denying it and giving their side of the story.

'I can't think of why they would bother.'

For reasons I've stated above. Believe me it happens though not so much as it used to. We all deserve privacy when seeing a doctor for whatever reason, without confidentiality those who so desperately need to trust won't be able to.

You use the expression 'very unwell' but as you know I'm sure, the concept of wellness is open to debate here and we're not talking about physical conditions. Psychiatrists are privileged, very wealthy people and they are often privy to highly inflammatory, very painful secrets - the least they can do is respect someone's privacy. Sometimes a person has taken ages to pluck up the courage to confide details of terrible childhood suffering to a doctor or social worker.

[toffee]

I agree with orderly disorderly that there are many unsavoury reasons that some relatives would want to know about someones treatment. Especially in the case of abusive relatives it utterly plays into thier denial if they can give loads of details about thier relatives 'mental illness' (even schizophrenia is over 50% nurture/environment according to twin studies). Also, some relatives with personality problems may relish the attention and gossip of having a relative in hospital (oh poor you, what an amazing person you are to still show interest in your relative' blah blah. It also gives them an 'argument winner' whenever they talk to the relative 'oh well maybe we will have to put you in the nuthouse again,', 'have you taken your meds', 'if you disagree with me thats the illness talking' etc.. etc.. Think how much power it gives someone to know information about someone elses health especially when it is such a stigmatised health issue as psychiatric problems. And a major problem is that once that information is given to relatives it is no longer confidential as there are no confidentiality laws as to how the relatives share the information.

One thing I really dislike about Rethink is it's emphasis on decreasing confidentiality. I do understand the reasons many genuine carers want this and why they and Rethink would push for it. That said though, I think that many carers who want to reduce confidentiality are very naive (understandably since they are caring people themselves) about just how abusive some families can be and have no idea the problems it can cause people when confidentiality isn't respected - and just sharing the fact that someone is in hospital would be a breach of confientiality in any other situation. It is much more palatable to believe that all relatives who want information are loving and caring and dismiss any contrary views as resulting from 'the illness' (which can be dismissed as something that 'cant be helped) than to accept people may have questionable motives for wanting sensitive information.

[toffee]

double post

[Spartikus Rex]

Thirty nine is plenty old enough to know who you want to see and who you don't. I've had several relpases over the years and consider my level of resiliance, my ability to bounce back, to having no over-pushy parents around and finding my own way. Helicopter parenting can be very bad for a outcome with regards self-reliance in mental illhealth. Self confidence is already low from having a diagnosis, parents busy-bodying your life can only make you feel more helpless and may amplify a dependancy mentality.

[keeping positive]

It's funny, I had the same experience when my partner was in hospital, I called the ward to see how he was compared to what he was telling me and they wouldn't speak to me without his permission, I asked the nurse not to get this permission though because he would think I was trying to find out things behind his back, not because I care but because he had this increasing thought I had something to do with him being in there in the first place!

On the other hand, I have told the Dr's a couple of things, not much, my partner did all the talking to get himself sectioned, but because he's threatening to sue them for what they did, they tell me they will have to tell him and the health authority what I said, this of course will only be detrimental to mine and my partners relationship and my health, not physically but mentally, there is no such thing as confidentiality for a carer and their concerns, it all seems a very hypocritical situation to me

I completely understand why confidentiality for patients is there, as pointed out, some relatives, friends, carers etc are not caring and could possibly use the information to the detriment of the patient. Would it not be a very good idea to have one or even two people listed to whom the Dr's nurses etc could speak to and only that person/persons would be able to ask for and receive information?

[CaptSpaceBat]

keeping positive, on 28 December 2011 - 10:29 AM, said:

...
I completely understand why confidentiality for patients is there, as pointed out, some relatives, friends, carers etc are not caring and could possibly use the information to the detriment of the patient. Would it not be a very good idea to have one or even two people listed to whom the Dr's nurses etc could speak to and only that person/persons would be able to ask for and receive information?

As far as I am aware, it is possible to organise this through the means of an "Advance Directive" - mine has the names and contact details of those whom I would wish be consulted or informed of matters should I require a hospital stay, along with my return to work and wider society plan. These directives are - in most cases - binding agreements and go a long way to clarifying such situations.

[toffee]

Keeping positive - I agree with you that it is a good idea to have people listed beforehand. While I think this may work if you havea voluntary patient I am not sure how useful it would be if someone was sectioned as the law insists on the nearest relative (which is a person clearly worked out in law not nominated) being informed. To avoid this I've been told by AMHP you have to displace your nearest relative through the courts and get agreement for someone else to be nearest relative (not useful if you don't have anyone else which is the case for some people). Obviously the above is rather a difficult and lengthy process. Since 2004 there has been case law where you can say that it is not 'practicable' for the nearest relative to be contacted and this can include if the patient has a long history of poor relations with the person and has stated they don't want the legal nearest relative contacted - but it would still be open to argument, plus, I know from experience that when it comes to a mental health act assessment they rarely pass on the information however much you have insisted they flag it etc.. beforehand.

Re: carers confidentiality. I can see your point, however, an involuntary hospital stay is incarceration without trial and has a huge effect on your social /legal/financial 'stuatus' and nobody would consider it acceptable for a criminal on trial not to be allowed to know what he was defending himself against. Once it gets to court then you lack confidentiality.
It is probably no consolation, but the same happens in child protection cases. If you inform the authorities about child abuse and the child is put on child protection register and then the parent/guardian decides to complain or take it through court then the person who raised the alarm loses all confidentiality. This can lead to very very negative outcomes for people who are brave enough to report child abuse and I would imagine it also deters people from raising an alarm, which puts children at risk as fewer people are willing to 'get involved' and report child abuse.

[rosie]

Thank you all for your very varied and informative replies. I do see the situation from all sides. I will just have to continue caring from the outside, feeling helpless and wishing with all my heart that one day I will be reunited with my son.

[ramboself]

Personally i disagree with the file sharing which allows social services to have acess to medical notes, i don't mind my gp having my telephone no and mobile no but social services the staff have a priority of saving the local council money and rationing resources, they're more likely to use whats on my notes as grounds for refusing help

I think i've got my sister as my nearest relative, my sister says if they phone they'lll get her answerphone, one support worker said we'll just leave a message on her answerpphone and laughed, since she's moved the contact details are out of date

[mias]

orderlydisorderly, on 27 December 2011 - 09:45 PM, said:

'Would an uncaring parent friend or relative even bother to want to know and help?'

Yes they would want to know but not to help but to try and get their relative heavily drugged and detained if they are abusing them. Don't forget it's still true that a lot of serious crime happens in families and many children are abused. Abusers are very good at putting on an act and playing the 'caring relative' role, it's all part of the cover up. Abusers are some of the craftiest, most manipulative people around. They also want to find out what their relative has been saying about them, denying it and giving their side of the story.

'I can't think of why they would bother.



For reasons I've stated above. Believe me it happens though not so much as it used to. We all deserve privacy when seeing a doctor for whatever reason, without confidentiality those who so desperately need to trust won't be able to.


You use the expression 'very unwell' but as you know I'm sure, the concept of wellness is open to debate here and we're not talking about physical conditions. Psychiatrists are privileged, very wealthy people and they are often privy to highly inflammatory, very painful secrets - the least they can do is respect someone's privacy. Sometimes a person has taken ages to pluck up the courage to confide details of terrible childhood suffering to a doctor or social worker.

Thank you Orderlydisorderly for your very helpful reply. I am sorry my 'thank you a bit late'.

[mias]

Also sorry everyone about the odd changes. Tried to do it from my mob and I think the battery was going and it refused to do anything right.

[Olivia - Rethink]

rosie, on 31 December 2011 - 11:20 AM, said:

Thank you all for your very varied and informative replies. I do see the situation from all sides. I will just have to continue caring from the outside, feeling helpless and wishing with all my heart that one day I will be reunited with my son.

Hi Rosa,

I know though it helps to know all the reasons behind the confidentiality rules, that it is also still hard for you, so best of wishes to you and I hope that you get to hear from your son.

All the best,

Olivia

[val m]

rosie, on 24 December 2011 - 08:28 PM, said:

Is there another carer who has experienced a similar situation to mine? My 39 year old son has been sectioned three times now. I have had no contact with him for the last 3 years not for want of trying. Because he has said that he does not want information shared with me I feel completely helpless. He has been under section for the last 3 months. I am not able to speak to the Ward or his doctor and am not given any information on his treatment. I went to the hospital today to drop off his Christmas present. He was not there so I casually asked the nurse how he was doing and she replied that she could not tell me unless she had his permission. I speak to his CPN once a week and she is only able to tell me that she has seen him so at least I know he is still alive. This is all put down to Patient Confidentiality and as his mother and only Carer I have no rights at all. I find the whole situation incredibly frustrating and very upsetting. Has anyone else experienced a similar situation or can offer me any advice.

Hi, I have the same problem: my 32 year-old daughter has borderline personality disorder & when she's in an acute phase, she too refuses permission for any dialogue between us, her loving & desperate family, & her care team. But Gps have just been issued with guidance that states that patient safety overrides all other consideration. When I put this to management, it appears that they feel they are operating in a parallel universe: "that doesn't necessarily apply to the Dept of Psychiatry!" When I fear for my daughter's safety, I now contact the police via 101 & they will respond to my information & check on her safety & come back to me to reassure me. As a solicitor I spoke to recently said, they "hide behind confidentiality." I've threatened them with going to the press & her MP (who has a special interest in mental health), but to no avail. I've decided now that I need to ignore management & use my time & emotional energy to have what contact my daughter will tolerate.

[toffee]

This really worries me. How do I make sure my GP doesn't give out information about me to 'relatives' who I would rather not have that information. I still get bullied on a daily basis as a result of my mother being informed when I was put on a section 3 and her complete inability to keep anything private. I'm devastated to learn GPs have this new guidance.