Reply from South London and Maudsley NHS Foundation Trust
Wed, 03 Jul 2019 09:09:58 +0100

We are sorry you have had this experience of using the service but thank you for telling us about it. If you would like to discuss the matter further please contact our PALS service by emailing PALS@slam.nhs.uk

After waiting two and a half years after the GP submitted my husband referral to the ADHD services, my husband was seeing at the Maudsley outpatient (he had previously used IAPTs and more than one therapist agreed they could see simptons of ADHD in my husband). My husband had a telephone interview on Friday 17 August 2018 and was informed that the consultant will contact his mother the following Monday 20 August 2018 giving two days to my husband to talk to his mother (my mother in law was on holidays that weekend) no having in account the procrastination and that family relationship may not be that good (so common in people with ADHD). My mother in law was contacted that Monday (my husband did not speak with her so I had to text her to at least let her know) and my husband was invited to a 1:1 assessment on Tuesday 21 August 2018(I did not attend with him because he wanted to go by himself) and he was asked to come back again on Friday 24 August 2018 as the consultant needed to contrast his information with the one the other consultant had gathered over the telephone conversations before being able to give a diagnosis. I was asked to fill up a questionnaire as the person that lives with him but no one contacted me to talk to me (I’ve been living 12 years with my husband). I asked my husband if I could go to the Friday appointment and he agreed. During the consultation I was acknowledge and greeted at the beginning of the appointment but whatever I wanted or needed to say was disregard as irrelevant because as the consultant stated “you didn’t know your husband when he was a child” so I felt no valued or listened to, but farther more the consultant stated “sometime when we contact the relatives we don’t even tell them from where we are calling” that’s very worrying from my point of view when you are contacting people older that 65 + as stigma is very big in this age group. As a example If you call my mum telling her you are calling from the Maudsley regarding her daughter I can assure you she won’t tell anything she think it may compromise my wellbeing or put me in a mental health hospital. I am aware of stigma and mental health in older adults. The consultant stated even though he has found evidence of my husband experiencing ADHD symptoms he could not find enough evidence he had it in his childhood but I have read information and research about ADHD stating that if the child had a active, happy childhood (my husband case) it may have stimulated the brain in a way it may have not been that obvious. We waited over two years not for a lable but for the righ to have access to the right medication a treatment that could help my husband to feel himself but it seems to me that this has been more a tokenism exercise than anything else. Carers are not involved in the process, not listened and no valued at all. You are ignoring the expertise by experience and leaving families in crisis

Reply from South London and Maudsley NHS Foundation Trust
Fri, 12 Oct 2018 10:43:48 +0100

We are sorry you feel our ADHD services do not listen to carers but if you wish to speak to us please call the service on 0203 228 2193 or please contact PALs at PALS@slam.nhs.uk, who will pass on your concerns directly to our clinicians.