Our Mental Health system

My toe is infected; it’s been an ongoing problem. I go to the GP and get referred to a specialist. The specialist decides to assess my toe. Apparently it will take some time to get to know the way my toe works and why it got infected.

The specialist has a team who are meant to be helping out but one member of the team unfortunately breaks the other foot instead. ‘Let’s ignore the broken foot’ they say. We’ll continue to look at why the toe has got infected. We’ll continue to assess not treat.'

The infection has spread by now to the whole foot. I now can’t walk. No treatment offered, no apology for the breaking of my foot. ‘We’ll keep assessing’ they say. One specialist leaves and another takes his place. ‘Well of course we have to start the assessment again - we don’t really know what the other specialist did in the 9 months he saw you, so we’ll start again. We’ll still ignore the broken foot and leave you to deal with that yourself.’

Another professional from a different hospital has diagnosed the actual problem already. They would offer treatment but only if the specialist from this hospital agrees. Nothing gets done. Maybe due to lack of money. Or just because we want to keep assessing. Assessment is key.

I can no longer walk but I accept that maybe I have to follow the system.

Another year later and the broken foot was never fixed. It’s now untreatable as it has been left too long. The infected toe/foot has now lead to sepsis and the whole body is in shut down mode.

I have to take this to court. I was wronged. The CPS decided to prosecute the individual who broke my foot. Still no apology from the team. Still no acceptance of the fact that maybe there is something that should be done to help my body heal.

I finally decide to ask why nothing is being done. I ask why no treatment has been given. I ask what the point of waiting and assessing was. Why not treat when there is a treatment being offered somewhere? I complain. I get told I am impatient and have too much anger.

Solicitors take civil action. My voice is apparently not enough. Nobody takes what I say into account. I’m only the patient. I’m only the one who now is practically bed bound due to infection throughout my body.

I get to see another member of the team. She offers help. Sensible help. Not sure of the time frame but it’s help. I wait a few weeks. Now in hospital. It got too bad to treat at home so we’ll keep you in hospital for observation – note, not treatment.

Suddenly I take things into my own hands. I cut off my broken foot as it can’t work anyway. Suddenly there is a realisation that there is something wrong with me. But now it’s too late. The foot has gone. Nobody can do anything.

I cry and say my foot has gone. I cry and say I cannot move for pain in my body.

The reply? ‘You cut off your foot. Now we need another team to assess you. This is too much for us to handle.’

It was an infected toe.

It turned into sepsis, amputation and very soon will lead to death.

I wasn’t patient enough. I should have waited a bit longer. If I waited longer I might have got something to help me. I’m too angry at people.  That must be the problem I have always had.  That must be the cause of the original infection.

‘Don’t look back at what’s happened in the past - put it behind you. Don’t think about the fact that you will never have a working body due to other people’s negligence. Don’t keep repeating the same story. We’ve heard it all before. Now you are just someone who wants to rely on the system and take advantage of it. Now you want to depend on us. Now you want treatment but we still have to assess.’

‘You have no patience’. ‘You obviously cut off your foot for attention’. You obviously have the criteria of a different type of illness now. We have to reassess now. We won’t give you the specialist treatment the other hospital offered - we don’t even believe their diagnosis now.

I should be pleased. I have some form of treatment starting soon to receive care for a short time. I don’t  understand what this all means properly but I accept it and thank the person for organising it. ‘But how can I be sure I’ll be ok until that starts?’ - oh yes, patience is obviously something I struggle with. And that anger. That must have been there way before I started seeing the team. It could be nothing to do with the fact that the team have RUINED ME.

This is obviously all an analogy.  I went to the NHS asking for help with my depression around October 2015. I was admitted to a ward by December 2015 and in January 2016 I was sexually assaulted by a staff member employed by the NHS Trust I was under. I subsequently spent around 7 month on 8 different wards being ignored, lacking support and with no therapy either for the original depression or from the assault. 

I was discharged from hospital by the end of July 2016 and started seeing a new consultant.  I thought he got me and understood what was going on.  I thought he was arranging for there to be support to be put into place.  I trusted and trusted and trusted. For months I continued as well as I could putting the horrors of the past 8 months behind me. I lost friends, my job, and pretty much anything I had before the assault.

I went to court in June 2016. My assailant was convicted and sentenced to almost 4 years in prison. I finally felt that people believed me.  I suddenly believed this myself.  I suddenly realised what had happened,  I had been blocking it out for so long.  I have never been taught the tools to deal with difficult situations due to my autism and within a few weeks I started to become very unwell showing classic symptoms of PTSD.

I was finally admitted to a ward throughout August 2017. However when I left I was still acutely unwell. I got to a point of harming myself in a way I had never done before and realised that I was not in control of what was going on. My NHS Trust had still not put anything into place to help support me at home. I ended up back in hospital once again.

I came out of hospital last week. I asked my 'team' what was happening with my support as I am desperate; and instead of offering help, I am told to try forget the past 18 months ever happened.  I mean if I stopped thinking about it then I would feel better wouldn't I? My anger levels = pretty high; I have been treated probably worse than my assailant. I have spent almost 2 years in unbelievable pain. He will only serve half his sentence behind bars - that's 22 months. And I? I will have to be assessed and assessed and assessed because I have now becomes so unwell that nobody wants to help me.

I used to think the mental health system was slow and unhelpful. Now, I believe it will be the ending of me.

Under-funding, cuts, lack of permanent staff, lack of resources - whatever you want to blame it on.  There is no excuse for lack of care and compassion. The CQC have stated that my Mental Health Trust 'requires improvement' in the majority of its services. But what will be done? Who will be answerable to more and more deaths due to the system just ignoring the needs of their patients?

This is an open letter to those running the mental health trusts. Look carefully at your actions. Look at your wards, your outpatient teams; see how they are treating people.  Ask for feedback and when someone complains, don't cover it up.

If I had an infected toe, I would never have to have gone through the process I have gone through for my depression. I understand that mental health is more complex, but at some point someone has to see that actually I wasn't that complicated originally. I wasn't that angry.  I wasn't that impatient. I didn't have nightmares and flashbacks.

For anyone else who has gone through something similar; I am sorry.  You don't deserve that pain. And anyone who tells you to forget the past - ignore them.  You cannot forget the past without understanding it and talking about it.  If human beings were capable of just turning their feelings off, there would be no need for a mental health system.

On a good note - I called the crisis team yesterday and they have changed their tactics.  I was told to make myself a hot chocolate instead of making a cup of tea.  At least they have made some changes.