This week I have found myself exposed to some of the shocking experiences others have had at the hands of both the NHS & privately funded mental health units. It is terrifying and shocking that this occurs in our society, and, at the risk of sounding like my mother, in this day and age. Abuse, degradation, neglect and a disregard of basic human rights; not only does this thwart any hope of recovery or respite but it can lead to death.
I am reeling. I am in shock. I don’t know where to go with this right now but I know it needs to stop. I am not talking about far flung places with no audited system, many of these cases have happened in units my daughter has been in, hospitals we have visited. How do we keep our children safe when we can’t trust the system set up to protect them?
So if I break it down and aim for logic here, what can I do, what is it we need and how are we failed? We want our children to be heard, to be taken seriously. What we don’t want is for them to be judged unfairly and put into a category that is wrong for them. This has to take place in the community: professional assessments, psychiatric reviews, CAMHS support.
If our children are not coping in the community, for whatever reason, we need a pathway that is agreed and understood by all parties. As parents and carers, it is vitally important that we know and understand what is available to us, what our options are, before we reach crisis.
I am aware that this should form a vital part of a CPA (Care Programme Approach) but how many of us have actually had this offered to us? I know from my experience that my daughter’s CPA is something focused on during discharge from a mental health unit and is a folder filled in during CAMHS reviews (every 3 months or so), but I have NEVER seen it; I have NEVER been asked my opinion on it’s contents and I have NEVER been involved in a meeting to discuss pathways and options for crisis or even recovery.
It has occurred to me that this is standard procedure for some, or maybe it is not? The point is, we are 3 years into our journey and I have absolutely no idea! Yet it seems so logical.
This is what tires me so: having to fight for everything. There is no feeling of “working together” instead the intense underlying theme of “them & us” is the overriding approach within the system set up to help us.
We are not in a good place right now; Maddy’s feelings of despair are escalating and she flatly refuses any help or treatment. As parents, we continue to flounder with how best to deal with this. We have no defined CPA and no idea what direction we should be moving in. Following her discharge from hospital a couple of weeks ago, CAMHS have reduced her care plan, not increased or even maintained it.
Their rationale is that the daily contact she had prior to her most recent crisis (or admission of crisis) clearly wasn’t helping or doing any good because we found ourselves back in the same place. They feel a more conducive approach is a proactive one where they work on her goals and aspirations. As I have previously said, this is a great plan if her sole intention was not to die. So they have told Maddy that she is being “downgraded” to the same plan as “any other patient” and will have access to just one meeting a week; this is not therapy it is a catch up, a chance to talk about how she is feeling. I guess they may sneak some therapy in there without her knowing; I can but hope.
In fact, Maddy has never had any therapy, beyond what was available during hospitalisation (and that was very little). In the early days, we were put on a waiting list for CBT and when we sought this privately because we couldn’t wait 3 months, we were immediately discharged from CAMHS. The only offer of therapy we have now is a DBT group. Maddy refuses this: that boat has well and truly sailed! Beyond that, in 3 years, nothing: no psychotherapy, no psychologist, no psychiatry, no artistic therapy, no risk reduction treatment, nothing, nada.
So despite the fact that Maddy is at her worst point ever, our care package has been reduced. We have no plan, no hope and no support. Sadly, my daughter has also experienced abuse whilst in a mental health unit; it is no surprise that I fight to keep her out of another one but we have so few options available to us and no understanding of what actually IS available.
I start a new week with the intention of understanding my daughter’s CPA: I want to see it; I want to pull it apart and I want a clear pathway defined. I want to know what is available in terms of support and what the tipping points are. I want to see a complete list, a flow chart even, of what we can access and what might help. Hell, we don’t even have a formal diagnosis beyond a statement of emotional dysregulation after a discharge 18 months ago. The professionals look at me blankly when I talk of “suicidality” like it is a term I have invented myself.
I can’t change the abuse, cover ups and disregard of our children within a flawed mental health system, not on my own. But I can take action to correct the roots of the care plan that is failing us so catastrophically. I am so sorry for all those parents who have been failed, who are being failed. Together we are an army and we MUST make a difference to guide and to change a system that is under resourced and full of intentional and unintentional wrong doings.
Stay Strong x