"An incomplete diagnosis and extremely poor follow-up"

About: Oxleas NHS Foundation Trust / Learning disability South London And Maudsley NHS Foundation Trust / Adult mental health

(as a parent/guardian),

This story originates from 2004 when my son was diagnosed with possible ADHD at Maudsley Centre for Behavioural Disorders. After a blood test he was found to have Klinefelter's Syndrome and the ADHD possibility was abandoned. I believe that many of the issues my son subsequently faced with getting access to treatment, and the severity of these issues, would have been negated had he been correctly diagnosed with ADHD at this stage. He was then referred to Oxleas mental health team in Kent.

He should have been seen by a psychiatrist there but was given a psychologist, who I felt was out of his/her depth and after a few meetings, because my son wanted to be independent and have accommodation of his own, the psychologist wrote to say they no longer wished to treat him. My husband and I moved and my son wanted to stay in Kent.

My son missed appointments with Oxleas but we maintain that he felt he was not being helped in a constructive and positive manner and felt he was wasting his time. To be truthful, if he had better things to do or if his testosterone had run out he would feel too tired and too depressed to go.

He was put into temporary accomodation and whilst there he locked himself out, got drunk with the other people at this place, had his tobacco, DVD player, mobile phone stolen and his TV kicked and broken. He did not lock his door as he did not realise he should. This incident was reported to the police. After complaining to the council and Oxleas we wrote to the MP of the area and due to his intervention (we believe) Oxleas got him into a hostel for six months. He was then given temporary furnished council accommodation.

After a few months Bexley council advised that they had another temporary flat available and would he mind moving within a week. He agreed and was moved in the middle of a freezing cold winter into an unfurnished flat. He had no furniture and no money to buy any. He slept on the floor on cushions lent by friends together with some borrowed blankets. He did not know how to get the heating on - no-one showed him and I went down to London and got him some second-hand furniture.

His behaviour deteriorated and I was at my wit's end when I discovered that in many cases ADHD and Klinefelter's Syndrome run parallel. I discovered that Maudsley Hospital had an adult ADHD unit and so wrote to the department who originally diagnosed him and requested that they refer him to that adult ADHD unit. My request was refused, they felt that further assessment of ADHD-like symptoms was not indicated. They had recommended that the local psychiatric services offer psychological input and that he be referred by his local GP to learning disability services for social skills training. I was also advised that people with mental health disorders are assessed and managed by local services!

In the meantime my son was taking drugs and drinking a lot. Vulnerable to people who preyed on him and his life was rapidly going downhill.

The new GP in his area agreed that he could have ADHD and referred him to the Adult ADHD clinic. Funding was refused. By this time my son was in such a state, in and out of the local secure unit, he was allocated a good psychiatric nurse, who was then transferred and my son left to his own devices until I complained to Oxleas, who then allocated him another nurse, social worker? Upon meeting my son, the social worker asked him how could they help and could he cook? This was in 2011 and he had been living on his own since 2004. He was so annoyed at these questions that he refused to have any further dealings with Oxleas mental health and asked me to help him move nearer to us, which I have done.

He is happier here but his erratic behaviour continues and he was diagnosed in September 2012 (thanks to his new GP) with ADHD. That was a relief and explains a lot about his behaviour but the sad thing is that he was advised that there is no available adult ADHD specialist in this area and would he mind seeing the specialist childrens' nurse. He said he did not mind but today is just under 2 months since he was diagnoses and to date we have received no acknowledgement letter from the psychiatrist who diagnosed him nor anything from the childrens' specialist nurse. I have contacted the psychiatric department where he was diagnosed telephonically twice. I spoke to the receptionist the first time who promised to give the specialist a message. I contacted the department again this week and spoke to an assistant who said they would investigate the matter and I still have not heard anything at all. It feels a bit like living in space. You phone departments, speak to a person and everything then vanishes.

I have since managed to get hold of the psychiatrist who recently diagnosed my son with ADHD and it turns out that the psychiatrist was waiting to speak to a colleague who has a special interest in adults with Klinefelter's Syndrome and ADHD and that was the cause of the delay.

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Response from Bill Berry, Patient Experience Manager, Patient Public Involvement Team Organisation and Community Directorate, South London and Maudsley NHS Foundation Trust

Dear Beatrice

Thank you for the post regarding your son. The post also includes details of experiences with other care providers, but I will seek to get a response to that part that concerns the South London and Maudsley NHS Foundation Trust. In order to do that I need some specific information from you, such as your son's name and any information about the team that originally saw him, You can contact me directly on 07791152641 or email me at bill.berry@slam.nhs.uk

Kind regards

Bill Berry

Service Improvement Manager

Patient Opinion Site Administrator

South London and Maudsley NHS Foundation Trust

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by beatrice (a parent/guardian)

Thank you Bill Berry.