"Patient's plausibility making it difficult for wife to be believed by medics"

About: Hampshire PCT Older people's mental health / Community mental health - Southampton

(as a carer),

Sometime ago my husband was made redundant this was a shock as he thought it would be his staff members and not himself. A few months afterwards he blacked out one morning - very brief. His, then, GP, came home an diagnosed labrynthitis.

His demeanour changed, he had mood swings, confusion, became argumentative and generally quite a different person. Life events also came to the fore - parents' death etc.

His condition worsened and he was beginning not to latch onto the simplest of things I had said. This is not a "matrimonial" husband getting under wife's feet syndrome.

We have shared everything in the past, but things were not as before. I accompanied him to his GP. We were concerned about the above but GP did not seem to be too concerned - saying that couples get argumentative and grow apart. We went because my husband was going to venue B before venue A. Not slowing down from 40 mph to 30 mph (we do not speed and this resulted in a snigger from the GP) and the fact he was becoming aggressive and angry when not latching onto things. He becomes a totally different person from the usual persona.

My husband also saw another GP who suggested we went to "Relate" which we did for two sessions but were referred back to GP as the counsellor considered my husband had a psychological condition.

He saw a psychiatrist (he suggested that we obtained a copy of the referral letter - we did and it showed me in a very bad light citing me as becoming labile and wanting everything black and white) who prescribed anti-depressants and told me (when I said that I found it very difficult to put up with the disruption) that when the going got too much I simply had to see a solicitor and obtain a divorce.

Anti depressants did not appear to work and GP stopped prescribing after about a year. We moved area and went to another GP. Once again we both went to see him as my husband was getting worse. We were constantly told nothing wrong with him. GP said "men get grumpy" "the marriage is not gelling" "there is nothing wrong with him". We paid £170 to see a private GP who considered it could be Aspergers. We had suggested this to previous GP.

Formal Assessment for that condition took place and Atypical Aspergers diagnosed. If anyone has lived with a person with Aspergers you will realise that things do have to be "black and white" in order to get through a day. My husband saw another psychiatrist. That one asked me "have you ever thought of killing him and what would you do if you did?". I was cautious in my reply. My husband did not go back to him for further treatment.

He then saw another psychiatrist who at the first appointment suggested that we may have to separate, asked me various things and then promptly reported some of them back to my husbands GP. These now being on husbands medical file. One comment being that "husband lives in a negatively charged environment". In my view this was most unprofessional, insulting and out of order. They also made confidential reports to the private medical insurance company who was funding my husbands treatment.

It is my opinion that my husband, having Aspergers, has a brain path different from non-Aspergers. Therefore, how he tells a given situation is different from how I would. So! once again medics are construing this to be "matrimonial". It is only that because we are married. It would not be so if I was his sister and we shared a home.

My husband always went into consultation first, so by the time I was invited in he had set the scene and it appeared the psychiatrist latched onto that. I was always on a losing wicket to start with. This psychiatrist continued to report to GP, in what I believe to be a very bad way.At one time I saw him alone, as a carer, for 15 minutes of my husbands 50 mins sessions in order to ask how I may help him at home whilst being treated. He said he was not prepared to discuss my husband with me unless he was present. I pointed out that my husband had given written consent but he was still not prepared to do so.

He was only in the next room, I know that I should have said "well I will go and get him" but one does not always think of that at those times and psychiatrist did not volunteer either.

My husband decided to cease the talking therapy treatment with him. At that point psychiatrist wrote to him saying that he thought he should leave me. That he could live alone quite well but that I could not and that I would need to seek support from other quarters.

My husband was most upset when he received that letter (I was not at home at the time). He emailed the psychiatrist to say that he was out of order in writing such a thing and the psychiatrist emailed back saying that he would be prepared to re-draft the letter so that my husband did not feel any constraints should I see the letter.

My husband and I have never had any secrets and have seen each other's correspondence for all time. My husband then asked to be referred to NHS Elderly Mental Health Unit. His GP said he did not know how old a patient needed to be before he could refer to EMHU and would let him know. He was unable to tell him there and then.

A psychogeriatrician visited our home, the following in my view took place. I stayed put that time, I wanted to know what was being said. A lot of incorrect things were said by my husband. The psychogeriatrician asked me "if what you are saying is correct how is it that you have been able to keep going for so long?". He also said "now just let him watch tv and do not nag him" and when he left, and in front of my husband he said "do you think I am leaving thinking he is an angel?".

My husband waited 4 months to see a psychologist who said that they did CBT and thought it not correct for him. He was referred to another psychologist and has seen them on five occasions. We had to ask for the consent form for him to sign for me to be involved with his treatment and condition.

I have also seen this psychologist in my role as a carer. I believe they were unaware of most of the things, which I told them. They suggested my husband had an MRI brain scan - he had one in 2007 and nothing showed up. He would need to be referred by a neurologist, he would be required to obtain this from GP and he asked me to go along with him, he gave GP written consent for me to be involved with his treatment etc.

I had not met his GP before, I briefly spoke with GP explaining I had seen the EMHU psychologist and that there report letter to him did not contain a lot of what we had discussed. He said "I am getting confused now. I think I would prefer to speak with my patient so that he is not coerced", my husband spoke about various matters, GP said "mm" "yes" "of course" "now you two go home and speak about it". My husband was about to leave without requesting referral, he appeared mesmerised. I had to speak up and say "we have discussed it and that is why we are here". I felt the GP kept putting obstacles in the way and I and my husband, had to be firm.

He has seen neurologist, had MRI scan and nothing untowards has shown. All that is being said is that it is the Autism which has worsened as a result of the redundancy.

Iam of the opinion that my husband is highly intelligent and does things wonderfully perfect, in my opinion has a degree of OCD. But he is verbally aggressive, non understanding, misses out words which I say - simple, spontaneous things. He does not understand and then asks "why" and "why" and "why". I speak very clearly and almost blandly to take account of the Autistic tendency. He is controlling in the simplest of things. He is oblivious to day-to-day things and does not believe anything I say and just wants to argue for the sake of it.

Each time he sees a medic he becomes more arrogant that there is nothing wrong with him. That he just wants to be treated like a normal human being.

He does not believe anything I say now, it is hard going. Most of my friends have disappeared - they are no doubt thinking my husband could not possibly be doing what I am saying, he is too proper and perfect.

I have my own physical health needs, a good few years ago I said to him "I'm not going to die, am I? Wanting reassurance, he replied "well you don't die straightaway anyway".

That was no doubt as a result of the Aspergers, but it hurts like mad. These were supposed to be the golden and simple years of our lives. They have turned out to be nightmare years. I have no idea where all this will end.

What I do know is that my own GP has told me that what I am going through is worse than being widowed, but they can do nothing for me. They suggest I have counselling, but there is no counsellor within the surgery. The NHS will not give me counselling, I have been for assessment, but as I am not depressed I do not qualify. Instead I was sent a booklet on anger management, it feels no one is helping me, no one is helping my husband either.

Because of the Aspergers he is plausible, he is technically telling lies about situations and is being believed, I am not. I am certainly not coercive, but I do have a duty of care and I am concerned. I have been to every agency in the land for help (not Social Services - that must be a last resort but I am getting near to doing that). No one seems to be able to help and the GP when referring my husband to the neurologist said "they believe he has Aspergers". There is a formal assessment report on his file at GP's

This situation has snowballed from one medic to another. This is what I have experienced. It is clearly a mental health issue and a difficult one at that.

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Response from Consumer Experience and Engagement Officer, Consumer Experience and Engagement Team, Southern Health NHS Foundation Trust

Thank you for your feedback which is always appreciated. If you would like to discuss this directly with someone then please contact the Patient Advice and Liaison Service (PALS) and Complaints Department on: 023 8047 5265 or by e-mail: hp-tr.complaints@nhs.net

I will also forward this posting to the Head of Older Persons Mental Health Service Improvement for a further response.

Response from Southern Health NHS Foundation Trust

The Head of Older People's Mental Health Service Improvement has now provided this response:

Thank you for taking the time to provide feedback on your experiences of the services you have received to date. Having considered your posting it is apparent that your situation is complex and seemingly involves a number of different experiences from more than one service. We would be keen to try and help you deal with the issues concerning the Older People’s Mental Health Services provided by Hampshire Partnership NHS Foundation Trust. To enable us to help you address these concerns as appropriate it would be helpful if you could contact the Patient Advice and Liaison Service (PALS) and Complaints Department on 023 8087 4065 (please note this number has changed since the last posting) or e-mail: hp-tr.complaints@nhs.net