I was unsure about posting this blog, uncertain about exposing an element of my life that isn’t common knowledge. Reservations about baring all in such a raw manner.
However, this experience could help someone else and that is something which is very important to me. To be able to empower just one person makes this entirely worthwhile.
So here it is, an edited (to shield private info) version of the letter of complaint which I sent to NHS England this week in relation to my son who has suffered with his mental health to an alarming degree over the last few years.
To give you a little back story my son is 17 and for almost 3 years has experienced mental health issues which have become progressively worse. He is classed as a high functioning Autistic individual, with Agoraphobia (fear of going outside) intense paranoia, chronic depression & anxiety, OCD, psychotic and manic episodes, who has been suicidal more times than I want to remember.
Life, in it’s normal everyday form is tough for my son, which means it is tough on our little family unit; myself and my younger daughter.
As any parent of a child with additional needs is well aware of it is a constant battle to be heard, to seek out the right help that your child so desperately needs.
Being a parent is hard enough with it’s everyday demands, being a parent to a child who has difficulties brings with it a whole new realm of standing up for what your child needs. It’s a world which those who don’t inhabit are not aware of.
It’s a place where you have to fight for absolutley everything. It is exhausting, it is mentally and emotionally draining. It is all consuming and leaves you with very little energy left to cope with day to day life. The toll it takes is astounding and it is wrong.
It is wrong that the obtaining the correct support that your child needs is so difficult.
“To whom is may concern,
My son has recently been under review by a CETR panel and it was decided (along with my son’ wishes) that a hospital admission into a Tier 4 adolescent mental health unit would be in his best interests.
It became apparent that there were no beds available in any units that are local to our home address and on Thursday 15th October at around Midday we were given the news that a bed was available in a unit in Birmingham for my son and that I needed to get him there for the following day.
This is a 200 mile journey from our home so I immediately began to make the necessary plans in order to make this happen. This included arrangements for my younger daughter to be cared for by my friends, arranging a hotel nearby for a few nights so that I could be close by for visits for the first few days, buying my son the clothes that he needed etc.
My son was extremely distraught at being placed somewhere so far from home, and the following 24 hours included meltdowns, manic episodes, hours of tears and even more heightened anxiety that normal. I cannot stress to you how much it took for him to agree to make the journey the following day and how much distress this caused.
By 5pm I had not heard from the unit to know what time we were expected to arrive so after many unanswered phone calls to ascertain this information I was told that the funding took 24 hours to process and that we could arrive anytime after that.
I explained that we were coming from a distance and that we would need to leave in the morning in order to get there at a reasonable time, the journey is around 4 hours including one planned stop. I was told that this would be ok as the funding would be cleared by lunchtime.
We left our home at 10.30am on Friday 16th and began our journey to Birmingham. At 12.17pm halfway to the unit, I received a phone call from the mental health nurse involved with my son to tell me that the funding had not been approved and that there was in fact no bed for him now.
The reason given was that the unit was too far from our home address. Firstly, whilst this is true, it was important that my son was admitted ASAP, as per the findings from the CETR panel, the latest meeting of which took place on Thursday 15th October.
Secondly, Birmingham was the same distance from Essex on Thursday when we were offered the bed, as Friday when the funding was not authorised. Surely the time to decide that this was not a suitable location would have been before this was even mentioned to me, to my son, before we had gone through the distress of the previous 24 hours and before we had begun our journey there.
The mixture of emotions that my son was feeling at this point is indescribable, a massive part of him was relieved as he obviously hadn’t wanted to be placed somewhere so far from home, his desire to get better being the driving force which enabled him to undertake such a momentous difficulty.
To say I was livid would be an understatement, my child, already extremely vulnerable, mentally unwell & also Autistic had been through the torment he had experienced for nothing.
I turned round as we were told there was no place and begun our journey home, finding somewhere to stop and take stock, to calm down my son and to cancel the hotel I had booked.
It was around 2pm and while we were halfway back home that I received further news. The issue had been escalated and the funding approved, the bed was in fact available once again and could we turn round and bring my son in.
By this point my son was in a total state, on the verge of a panic attack and just could not take anymore. It was not in his best interests to continue with this farce anymore by this point.
I was told that that the bed would be kept for my son and that if he felt able to we could then come up on Monday 19th for him to be admitted. This is what my son said he could manage. The next few hours consisted of many phone calls back and forth between the mental health nurse, the unit and myself as it transpired that in fact they couldn’t admit him on Monday after all and that this would have to happen on Sunday 18th.
This obviously caused added stress to the situation as I had begun to rearrange my daughters childcare, hotel, business commitments etc. The distress this whole abomination caused to my son cannot be put into words.
I fail to see how it is acceptable that this situation was allowed to happen.
I fail to see how it is acceptable to put a person already on a knife edge in terms of their mental health in this situation.
I fail to see how it wasn’t picked up immediately that Birmingham is indeed a long way from Essex on Thursday, instead of Friday.
I fail to see why this place was even offered based on the rationale of the funding being refused on Friday.
What was a tremendously difficult situation to begin with was made into an atrociously disturbing chain of events further causing affliction to my son.
How is that acceptable?
Who was responsible for this?
When I spoke to an individual at the unit on Friday afternoon I asked for written confirmation that this place would indeed be ready for my son on Sunday and we agreed an arrival time of between 3-5pm. I did not receive an email as requested so it fell to me to leave a message with the ward as they rarely answer the phone to gain the confirmation.
They did confirm and I had many questions, we were not given any guidance as to what my son was/wasn’t allowed to take with him, what the procedures were for visiting, we knew none of the information that we needed in order to prepare ourselves or my son. My questions were answered however I was not made aware of one hugely important piece of information. That being we were to just drop my son off and leave him there.
We were not able to be with him to settle him in, to speak to the doctors, to know the procedures, what he would be doing, when he would receive assessments, literally nothing. Had I of been told this crucial information I could have prepared myself and my son in advance. As it was we were both shocked that I had to just leave him there to his own devices, to speak to the doctor himself, to not know what was going on with my child.
That is absolutely disgusting and I see this as another failure when it comes to the total mess this whole scenario has been.
I asked that someone call me to let me know how he was, when he had been seen by a doctor, what the outcome of that was etc. I received no such call, yet another failure and lack of care or concern. Again it was down to me to initiate contact with the ward to see how my son was, however there was a distinct lack of information and I was basically just told he was fine.
My son got his phone working (smart phones are not allowed and an old fashioned basic phone is all that is permitted) and was luckily able to call me himself to let me know how he was doing later on Sunday evening. We also spent a considerable amount of time on the phone together a lot later on that night when an incident was taking place on the ward.
I heard everything that was happening and it was horrendous. My son was close to having a manic episode brought on by what he was hearing and seeing. I totally appreciate that there will always be incidents in units of this type however I was utterly shocked and traumatised by what I was hearing, as was my son. His levels of distress were extremely high as one girl was apparently pushed out of the way by a member of the staff and ended up with an injured face and covered with blood.
There was constant screaming and shouting as the girl involved wanted a drink, this went on for a considerable amount of time but she was neither allowed to get a drink, nor would a member of the staffing team get her a drink.
My son was finding it unbearable to deal with, had it not been for the fact that I was on the phone to him, talking to him and trying to keep him as calm as possible I do not know what would have happened.
After a very long time of this going on my son asked if he could get the girl a drink, which he was allowed to do, the girl calmed down, the screaming and shouting resided and everything settled down.
I understand there must have been reasons why this girl in question wouldn’t be allowed to get herself a drink, or rather, I should hope there would have been a very good reason. What I don’t understand is why it took my son to disperse a situation that has escalated so badly.
How is that acceptable?
Can the staff at this unit not cope with the patients?
Is this kind of disturbance over a child wanting something so simple as a drink common practice?
Are the children denied access to drinks, a basic human requirement?
At the time of writing this email it is 3.30pm on Monday 19th October and I am yet to have a phone call from anyone at the hospital with any communication about my son. (At the time of writing this post a day and half later there has still been no contact).
I don’t know when he is seeing a psychiatrist, a psychologist, a doctor, or even if these things are happening. They didn’t even know his name when we brought him to the unit. My son is there to get the help he is so desperately needing and wanting, yet we don’t have a clue as to what is going on.
My son told me this morning that no visits are allowed as there is a confirmed case of Covid on the ward. It was yet again down to me to attempt to gain some clarification around visiting, after many more unanswered phone calls I finally got to speak to someone on the ward.
No visits are allowed for at least 14 days, not even socially distanced outside visits.
I have left my son in a unit where I know nothing of what is going on with him, where trying to get information out of the staff is like the proverbial blood/stone issue, that’s when I can actually get my call answered.
I have massive concerns over my son being in this unit, grave concerns. The whole process up until this point has been utterly shocking, abhorrent, and if this is normal for adolescent mental health patients and their families then it needs to be exposed and dealt with so that a greater level is care and attention is in place.
There has been total disregard to the difficulties my son faces and they have been exacerbated at every level, a truly awful situation at it’s most basic level has been made entirely worse by all these factors.
How is any of this acceptable?
I am prepared to take this matter as far as I need to in order to reach a satisfactory resolution.
A resolution where my sons needs are looked upon as a priority.
A resolution where my needs as a mother are taken in to consideration and I am kept updated as to my sons wellbeing.
A resolution that involves a place for my son at a unit which is the closer to where we live being made available as soon as possible.
A resolution that ensures that no other child or parent has to deal with the abominable situation that we have had to endure.
I expect that my complaint is afforded the level of acute scrutiny it deserves.
I expect to have this whole situation with all points raised thoroughly investigated.
I expect to be contacted regarding my complaint and the actions that you will take to reach the resolutions needed within a speedy time.
My sons welfare is at the heart of this and I will not rest until I am thoroughly satisfied with the answers I receive.”
At the time of posting this I have had no response to my complaint, nor communication from the unit. Luckily my son is able to call me whenever he wants to.
I sincerely hope that you never have to endure such a situation with your child. But if you do, please stand strong and keep shouting for what you believe is right.
Improvements will never be made without enough people making enough noise.
Mental health services are hugely under-funded and it is an incredibly sad fact that people suffer unneccessarily because of it.
As parents we have to be the voice for our children, to ensure that their needs are being met.
To have your child tell you they don’t want to be alive anymore is the most heartbreaking situation you could ever imagine. It shouldn’t then take years of jumping through hoops in order to secure the right help.
I’m not sharing this insight to scare you, quite the opposite in fact. I am putting this out here to show you that no matter how fucking hard it gets you have to trust your instincts and advocate in regards to what is right for your child.
There is no ‘one size fits all’ method as every child is unique. What works for one child may not be suitable for another, but you know your child better than anyone.
Don’t stop fighting for what you know is right.
You will need to dig down deep to drag up reserves of strength that you never knew you possessed. It won’t be easy, you may feel like giving up, I know I have felt that way at times. But keep the focus, keep the wellbeing of your child at the forefront of your mind and don’t accept something which you have doubts about.