My son has been meeting regularly with a psychiatrist assigned by the Children and Young Peoples Mental Health Service (CHYPMHS) in Kent which is now commissioned by the North East London Foundation Trust (NELFT), a recent takeover from the Sussex NHS Partnership that happened in the summer of 2017. I have battled for the last two months to get him his follow up appointments. I’ve also complained to the patient liaison services (PALS), just to get a letter sent to our GP, so that my sons medication can be prescribed in the community by the doctor. On one occasion the GP refused to prescribe the meds as she had not had a letter from the psychiatrist. The medication he takes isn’t one that you can just stop taking. My sons regular psychiatrist has long term sickness and we have now been seeing a locum psychiatrist.
In my experience of adolescent mental health, psychiatrist have become “pill pushers” and over the years the amount of medication prescribed to my son has slowly increased. The most recent prescription was for Risperidone, an anti-psychotic drug which was prescribed for his agitation. Over an eight week period his dose was gradually increased to 3mg per day. His blood was tested for various functions and the psychiatrist asked the GP to prescribe. My GP was reluctant. My sons circumstances in life changed dramatically for the better and he and I made the decision not to take the Risperidone any more. I explained to him that his anger was a part of who he was. When he was born he came into the world angry, his fists were clenched, his brow was frowned and his scream was loud. I explained to him that his anger would be something that he would have to learn to live with. He could take medication to suppress it. His mind would be stable but what about his thyroid, kidneys and liver? Very slowly I reduced the amount of medication and told the psychiatrist I had done so. She made no attempt at helping him reduce the medication.
The labels my son has or has not been assigned by our child and adolescent mental health system are not useful when discussing our experiences as a family. Labels only become useful in mitigating circumstances in a court of law when attempting to understand particular behaviours such as deviance. My son knows and understands the difference between right and wrong but when he has what we call an “episode”, an other part of his “self” comes into existence. This self cannot be reasoned with, this self is the one that makes my life very challenging. My extended family broke down many years ago and my parents, grandparents, aunt, uncle and cousins that I once grew with as a child no longer exist. It’s all gone, disappeared into oblivion and now I’m here fighting my own battles alone, literally, with no one helping me fight my corner. How many others are there like me? My father always said “it’s better to have loved and lost that never loved at all”. I am lucky enough to have loved and lost them, my children are the ones who never loved at all. And the really sad thing is, they are completely oblivious to the life they lost.
In just over a week he will no longer be considered an adolescent. Our options are to be referred back to the GP for care or to be referred on to adult mental health services. At this moment I am waiting for his final appointment with Kent CHYPMHS which I have had to battle for as once again I have received no follow up letter. The psychiatrist told me that he would be referred back to the GP, my next battle is to get him referred to adult mental health service as he has had a recent episode which has made him very vulnerable. I have to begin a whole new journey and manoeuvre my way round the adult services for mental health.
Over the years I’ve contacted a couple of news desks, of well known national newspapers to highlight the challenges I’ve had on my 12 year journey as a parent of a child with mental health needs. Sadly none have returned my emails. I’ve highlighted my issues with Health Watch and the then Minister of State for Care and Support, Norman Lamb. As you can imagine I’m left feeling a little lost and not very listened to. This account of our experience is my final attempt at being heard. I find my strength in the love I once had and although I now walk this part of my journey alone I am lucky enough to have been loved by parents who gave me the inner resources to battle for what is right. Meanwhile, I’ll walk through the trees to escape the life I didn’t choose but was given to me.
- Samaritans are available 24 hours a day, 365 days a year. If you need a response immediately, it’s best to call on the phone. This number is FREE to call. ☎ 116 123 (UK) 116 123 (ROI)
- MIND, the mental health charity: Website ☎ 0300 123 3393
- Rethink Mental Illness: Website ☎ 0300 5000 927