Suicide and lack of support from the services

[Huegatort]

Our Son has tried to take his life on a few or more ocassions despite my Husband and I and our Son's continual care. If anyone of us saw him attempting suicide we would stop him.
We had no help or support from any of the services. The last time he overdosed which was last year, we took him to the local Hospital where he waited over half an hour to be looked at. My Husband and I were exhausted mentally and physically and made this clear to the staff. We explained that they would have to find a place for our Son to have respite because we desperately needed a break but a member of the mental health team saw him before he was discharged and we did not get the rest we were desperate for, nor have we ever had a break from caring.
We have had 4 Carers Assessments in 21 years of caring.
Recently matters got worse. My Son and I saw a new Consultant at the clinic he went to for his 3 monthly check ups. After seeing the Consultant on about 5 occasions she made clear that due to the severity of the way my Son's illness affected him (paranoid Schizophrenia) he needed a CPN but our Son refused. Sadly the CPN we had who supported us died suddenly. My Son does not cope well with strangers.
This Consultant then decided to send our Son for an epilepsy test explaining that his illness could be due to that and not Schizophrenia? The test was negative.
The next consultation the Psychiatrist was rude and abrupt to my Son and I was shocked by her attitude.I went to the next consultation alone and explained my concerns but like always I was assertive but polite. She didn't want me there. My Son was so upset by his experience that he decided to not see her again.

She then sent a letter to our Son which read:
I have reviewed your case notes and I am unsure of your diagnosis of Schizophrenia. I have always tried to investigate other possibilities and you are aware of that.I believe that you have a long term problem that started in your early teens or maybe earlier. We are not sure if you need your medication Olanzapine and I have written to your Gp to have your medication reduced and then stopped.

My family and I were appalled by the content of this letter which we found to be irresponsible, dangerous and damaging.

We then were sent to see the Clinical Director for this area. Our Son saw her alone for about 40 minutes and then ask my Husband and I to join them. As we walked into the room the Consultant said, "look he is talking," and repeated this 3 times. My Husband and I were bemused and then our Son sat there and it was clear he was confused and upset. She ask him his diagnosis and then explained the he musn't get caught up in labels and then she said he had a diagnosis of PD? She said she would have him working and attending college amongst other things.
There was no explanation to any of us. We were told and not ask! If the change of diagnosis was explained and then ask us about our concerns or anxieties then fair enough but there was none of it. We then left feeling confused and upset.
I saw our family GP who had a totally different letter sent to him. There is no other Consultant that can see him in this area and we were offered to go back and see the consultant that we had but after having a family discussion we decided that this would not help our Son.
The only support we have is our GP and of course ourselves.
We saw our Son develop this illness and saw him without medication and it is frightening to think that this consultant wanted to stop his medication. Our Son still takes Olanzapine and our GP thinks it wise.

[pauljstephens51@hotmail.com]

can i ask what part of the country you are in and what health board is covering your area. i have found that you have to fight to be heard and refuse to accept all what there say. you have a right to see someone differant.what was the out come of the cares assessment?? if you are unhappy get advice rethink and mind or sane all give good helpful advice and will help you

it is hard but keep your chin up and dont take no for a answer..

[fluffycat]

I am sorry to hear about your experience

There are some doctors and medical professionals who treat/see Carers as over protective. We also met non sense speaking & judgemental professionals. What is this Clinical Director's role for your son's care??

Diagnoses are confusiong and often difficult to spot. But talking about "labels" and no further explanation are so unfair. If the current medication is going to stop then they sould have some alternative support. It seems to me that it is part of the "cuts" and your son is getting discharged from Primary Care? Unless your son is recovered, happy and agree with that decision, they cannot force the new care programme.

Persoanlity Disorders are big topic in mental health now and they are getting more research and support at last. My husband was re-diagnosed as BPD along with some other illnesses last year - after he was told "nothing wrong with him" by the first psychiatrist 9 years ago + a locum psychiatrist suspected him having PTSD...

Do you have Rethink and / or Mind nearby? It is worth contacting them.

Links may be helpful:
http://www.rethink.org/
http://www.mind.org.uk/
http://www.rcpsych.ac.uk/

Take care.

[jessie]

How old is your son? I assume as you've been caring for him for 21 years, he is now technically an adult, and I'm surprised his Psychiatrists/Consultants etc. include you in his assessment - confidentiality and all that.

I know a little about Personality Disorders as my mother has one and it's extremely exhausting trying to help someone like this, it's also difficult to get advice because of medical confidentiality. Even if others don't agree with the behaviour of a PD affected person, that person has a right to behave as dangerously and bizarrely as they choose.

If it's being said your son doesn't have a psychiatric illness (e.g. schizoprenia) but a Personality Disorder, then they should not be discussing his case with you. Hope this makes sense, but as they are discussing him with you, it looks like they think he DOES have a psychiatric illness.

Your comments that your son appeared to you to be confused but his Consultant said "he;s talking" suggests to me that perhaps he behaves differently when apart from you & your husband.

[fluffycat]

How old is your son? I assume as you've been caring for him for 21 years, he is now technically an adult, and I'm surprised his Psychiatrists/Consultants etc. include you in his assessment - confidentiality and all that.

If patient is happy to share information with Carers (parents, patners, childrem & friends) can be involed.

Even if others don't agree with the behaviour of a PD affected person, that person has a right to behave as dangerously and bizarrely as they choose.

PDs are recognised mental illness not behaviour propblems, and they are mentally ill - many things do not make sense to the others but ill person does not know what is going on when they are in crises / psychotic episode (like hallucination, flashbacks, memory loss etc) as they are irrational that is affected by the illness and they do not "choose" how to behave. People who choose to behave badly or troublesome to the others do not have PDs.

Personality shapes person without it human would not be able to function. People with PDs are having very complex issues and heavily affected by environment since their childhood - this means a lot - it is far more than having difficult childhood.

I do not mean being picky but mental ill health is already attached with so many misunderstanding, discrimination and stigma, I would like to request for some respect and empathy.

http://www.personalitydisorder.org.uk/

[Huegatort]

Hi Paul
Thankyou so much for taking the time to respond. I will take on board all that you have said.
I cannot reveal the area that I live due to respect for the Consultants in this area and their patients.
Regards

[Huegatort]

Hello fluffycat
Thankyou also for taking the time to read my message and to respond; I very much appreciate all that you have written and once again I will take on board all that you have written.
I also think that other people learn so much from all everyone has to say here.
Regards

[Huegatort]

Hello jessie
Thankyou also for taking the time to read and respond to my message, I appreciate all that anyone has to say and of course I learn so much from others.
Personality Disorder IS a mental illness!
When the Psychiatrist said look he's talking: she meant that people with Schizophrenia didn't talk! Yes ,strange though that may seem that is what she meant. Our own GP was bemused by that comment also.
MY Husband and I and our Son have been most supportive in our Son's care and have always been available to him 24 hours per day and night due to his suicidal tendencies. He also has OCD, CVS, SEVERE DEPRESSION and GASTRO OSOPHEAGAL REFLUX DISEASE.
It was explained that our Son's brain was damaged at birth. There is Schizophrenia in the family so it obvious that our Son had a predisposition to this malady.
As a Carer and a Mother it is paramount that our Son's illness is discussed with us at every step of the way. This way it enables us as a family to understand his care needs and the problems he faces every day.
I have read everything possible to teach myself as much as I can about Schizophrenia, in order to give our Son the best possible care and to enable us to understand all that is being discussed at each consultation.
The professionals do discuss our Son, and yes, they should discuss him with us!
I am aware that our Son is an adult but like many people with mental health problems he gets frightened, confused and anxious. If our Son ask us as a family to wait outside whilst he spoke to his Consultant then of course there wouldn't be a problem and he has always known this.
Regards

[pauljstephens51@hotmail.com]

i find that with my partner the consultant will talk to them first than i am invited in to discuss what was said etc. that i find works well, well it did until there changed there consultant who refused to talk with me under the data protection laws. which are used alot to block you. it is very important that you are kept informed by them as it will be you who there call when help is needed. like you i started reading all the books on the illness but found alot was misleading and that all told me differant so i gave up and started learning about it from my partner on how the illness affected them. i found that so much better and means the care i give is based on what is best for them..

[Huegatort]

Hello Paul
Our Son has also taught us so much about the way his illness affects him and of course like you, this has been most helpful in understanding his individual needs.
You are so right when you say we should be informed, it is us as Carers that pick up the pieces when things go wrong or when our help and support is needed.
I feel that if we as Carers are happy with the way in which we are treated at each consultation then that helps. After all it is the Carer who makes observations that the patient can't; this is also vital in receiving the best possible outcome at each consultation.
Mental illness as you know is so very complex and it is important that we don't lose our way as Carers, then where would we be.
God Bless Paul and thanks again.