I have been wrangling with where to go next with our story….the thing is, I have a mixed up chronology, for reasons already rehearsed. In fact, I am not entirely sure that chronology necessarily matters. For that reason, I’ve decided to give you what I think is a span of maybe two years of this story, which is wrapped up in a single letter.
I wrote and emailed this letter to Matt Hancock, Secretary of State for Health and Social Care and Jackie Doyle-Price, Minister for Suicide Prevention and Mental Health on 23 January 2019. I have redacted it very slightly, for elements of our story that we have agreed as a family not to share publicly.
23rd January 2019
Jackie Doyle-Price
Matt Hancock
Dear Ms Doyle-Price and Mr Hancock
I am writing in the hope that you might spend a few minutes reading my letter, which is about my 16 year old son.
I am writing to you not because I expect specific action for him, but because I want to highlight to you the way in which current services for children are configured such that they seem to inadvertently let down some of the most vulnerable young people. In our journey of the last two years, with just one or two exceptions, every individual we have encountered along the way has tried to be helpful and I’m sure are nice hardworking people, and yet systems, processes and protocol and a lack of joined up working seems every time to fail our son.
I’ll start at the end, or at least the current part of our story. Last week a social worker asked me if I would like them to take my son away. This is the culmination of two years of chaos and heartache, and you might imagine my answer to this might have been yes. As a family we are exhausted and broken. We can’t rest when he is in the house – and we can’t rest when he’s not. Every night I go to bed wondering if he will still be there in the morning, if he will have run away again, or if he will be there but have succeeded in ending his suffering. But no, I don’t want my son to be taken away. I want him to remain at home with his two younger brothers and access the support he needs to get better. Is that such a big thing to ask? It would seem so.
I’ll take you back to the beginning. My boys have all grown up in a loving home and are all intelligent children. Around two years ago my eldest son started to show signs of extreme anxiety and depression. His attendance at school was very poor (around 60% in year 10) and his mood swings were horrendous. We spent a year trying to manage this between the GP and the School Counsellor. He took to smoking weed to try and manage his anxiety. Around 18 months ago the GP referred him to the CAMHS service. Some months later, he was assessed via telephone triage. They agreed that he was at risk of self -harm but advised that he did not meet the threshold for their service. They advised us to lock up all medicines, knives, anything he might use as a ligature and anything else we might imagine he could use to self-harm. This was January 2018. We were stunned by this response. He basically dropped out of school at this point. His behaviour was totally chaotic and he would stay in bed for weeks at a time, in the dark. In March 2018 I found him in bed with bleeding wrists and took him to A&E and begged them to help us. He was discharged later that day without having seem a psychiatrist or psychologist (which I believe breaks their own protocol) but with an urgent referral to the CAMHS service. Our hearts sank. CAMHS assessed him again and said that he didn’t meet the threshold for their service, despite being obviously severely depressed, anxious and self- harming. They referred him to Aquarius for drug counselling.
He was seen by the Aquarius team once, who discharged him after he told them he didn’t have a drugs problem and that the only problem he had was with us. He was 15 at the time. It seems utterly extraordinary to me that an NHS team would discharge a self-harming anxious and depressed child with absolutely no reference to his family.
We struggled on through a terrible summer and into last Autumn. Chaotic incidents became more and more prolific. One night we were woken by a noise on the roof. He had climbed onto it, terribly distressed and had no idea how or why he was there. All he could say was that he felt as if we would all be better off without him.
In the Autumn we were so concerned for his mental health we took him back into A&E as we had lost all faith in the CAMHS service. They assessed him and made another urgent referral to CAMHS. This was October. Following that incident we then found a stock pile of prescription painkillers in his room and have now resorted to buying a safe and locking internal doors in the house. He runs away on a regular basis. We have had two social services case files opened and closed – the third case has just been opened. This is when I was asked if I would like them to remove him.
At the October CAMHS assessment we finally thought we were getting somewhere. He saw a psychologist for the first time who agreed with us that there was definitely a problem and that he had been done a disservice previously. We have not seen them again until last week (January), when he finally started treatment. He is due to receive a 6 week course of CBT with a CPN. Our hearts sank again. Whilst we don’t discount the value of CBT, our strong sense is that he needs a proper psychiatric assessment and possible medication. When I asked about this I was told that they don’t like to diagnose or medicate children. I do understand this – however he is 16 and a half, and a 15 stone rugby player with the physiology of a man. A man-child, who often refers to himself in the third person, has told them that he hears voices, sees things hiding in his room, and often says things to me like “I’ve gone away” or “I’m back”. Whilst he is very clearly extremely unwell, we absolutely accept that at times his behaviour has also been very challenging. However, he is not a terrible person, and should not be written off.
For the sake of the right intervention now – he is not far away from a life of extreme poor health, which will ultimately cost the state significantly more money than it would cost it to help him, and us, right now.
My last point is this. We are a family who understand the system. We have worked in the NHS – my husband for over 30 years. We understand that there is not enough resource and that tough decisions have to be made. We are able to play the system as best we can and articulate our needs and that of our son. And yet still, after two years, we have not got terribly far. We are tired, disillusioned, heartbroken and frankly, desperate. But what hope for families that don’t understand how to navigate the system, and that aren’t able to articulate and advocate for themselves? System change is hard to effect but these are young peoples lives we are talking about. We have to try.
All I ask is that you take the trouble to read my letter and to remember some of the things I have told you when you go about your work.
Yours sincerely
LISA HUGHES
Whilst I did not ask for or necessarily expect a reply, this letter was not acknowledged by either office.
Post script. I realise there is some difficult reading in my posts, to say the least. If you are struggling for help, my address book starts with a list of mental health organisations that I have found useful. And keep going.
It’s incredible to think we live in a developed country in 2020 isn’t it. Even before COVID our systems were failing. I’m incredulous for you. How dare they not acknowledge your letter. I’m so sorry. All my love as you know xx
I know Rach, and thankyou. I guess I never thought it would actually get in front of the people it was sent to, but I do imagine, someone, somewhere, read it and made the decision to sit on it, or just hit delete. I guess they’ve read it hundreds of times.
I’m reading this with a heavy heart and tears flowing.
The raw pain for your boy, for you and your family is so visible, how dare they ignore it.
I have a godson who in the end had to leave his home and family. It’s heart breaking.
Love to you all.
Lynn xxx
Thankyou Lynn. I am sorry about your godson, and it is heartbreaking. And I guess the thing is, we all know someone who is in this situation, of sorts. It is extraordinary in a way that it is so ordinary. As you and I say to each other, one foot in front of the other. Keep going x
Such a sad recount of unimaginable misery for your son and your family. May the love and thoughts sent your way be a tiny help.
You have probably thought of this but I wonder if the private sector might be worth a try. Some years ago when we lived in the UK my husband needed skin cancer treatment which we felt was more urgent than the waiting time for NHS treatment. We paid to ‘go private’ and had one lot of surgery which was not enough but the surgeon was able to return us (quickly) to the NHS for further treatment. Perhaps it might be a way in in this situation although I realise that something physical can be tested for and treated much more easily.
Hello Judith. Thankyou for taking the time to respond to my post. I’m afraid our story, or variations of it, are all too common. The answer to your question is very long and very complicated but the short answer is that we haven’t, for a multitude of reasons but not least that he spent a great deal of time simply not communicating at all. We are thankfully in a better place at the moment but we never take it for granted. I hope your husband is improving. Take care and thankyou
Lots of love to you and all your boys Lisa. You’re doing an amazing job. I’m so angry for you that they never even replied though x
Hello Claudia
I think part of the problem is that people who work in it are so hardened to it all – I guess you have to be to an extent in order to be able to try and work without getting dragged down by it all. However that doesn’t help us families who need it. It’s terribly sad. Thankyou as always.
I hope “ they “ do read your letter and someone somewhere starts to act upon it
I think that ship has sailed Julie, which is why now things are better than they were and I feel that I have the energy, I’ve started to try and do something to help in the way I think I can. Hard going.
Thanks for sharing your heart breaking experience. Keep writing, don’t give up trying to get the message through…
Thankyou, and I won’t. I don’t actually think I can, now I’ve started writing I don’t seem to be able to stop.
To reach out like you did and to get zero response must just add to your disconsolate situation.
Hugs to you and your whole family.
xx
Thankyou Pam, I’m afraid I wasn’t terribly surprised. And thankyou for that hug!
Oh dearest Lisa,
The story of your son brings back so many raw emotions & memories of our experiences with our daughter & later, our son. Their stories are so similar. I feel your pain keenly & my heart goes out to you.
I also feel so incensed on your behalf that this heartfelt letter was ignored without even having the common decency to acknowledge it! Aren’t they supposed to be working for us?!
When it comes to mental health, the system is broke & has been for a long time & until that changes, I fear for young people & future generations because the mental/emotional/psychological pressures they face in the modern world are greater now than they ever have been.
God I really hope I’m wrong….
Much love to you on this sunny Sunday, I hope it’s treating you gently xxx
Thankyou Sam. Thankfully things are better at the moment and I’ll take that – although you never stop looking over your shoulder. I’m sorry that you have been in the same place – it is pretty desperate when you are right in it. I agree that the system is broken. The decision making is so short term and so driven by a lack of funding, and yet of course what it stores up is problems for the future – for our children, for us and ironically for the state. It is a massive problem and it feels as if it’s been put in a box marked “too hard”. And so we keep buggering on. Take care x
Oh Lisa, my heart breaks for your family. We are together in the same journey- I too have written an almost identical letter to my MP, I did get a reply. Which went something like this ‘ if you could tell me who you would like to pass your issue onto and what I can say to them’ – this reply was from my local MP Secratary I don’t think they actually read my letter!
Sending you and yours strength and courage xx
And you too Chrissie. And we will just keep getting on with it, because that’s what we do. Take care x
Oh my days…this could be my son you are talking about. Children’s mental health services had such a long waiting list that he was 4 months off being 18 when he eventually got seen…they said there was no point seeing him and referred him to adult services. They were marginally better and did medicate him and gave him various diagnoses…but they are by far not great! He slashed himself up very badly and was put on the CBT waiting list as urgent…3 years, 3 god damn years later he was seen only to be told they didn’t deal with personality disorders and signed him off. I lost my shit at them! He is currently nearly 23 now and sees a psychiatrist every few months and is medicated up to the eyeballs…but he still has dark frightening thoughts, sees and hears things and spends 99% of his time alone in his room. I’ve tried to access anything and everything to no avail. He has autism too which doesn’t help as he won’t interact with strangers or go to groups or anything like that. We have all but been forgotten and I see no future for him. He is ridiculously intelligent and he could do so much good in the world if only people would’ve helped him earlier so it didn’t escalate to this severity.
My mental health has suffered as a consequence so I too am on strong medication just to get through each day…we are all broken in our family and nobody wants to know. I feel your pain and I applaud what you’re doing…the world needs vintage dahling for sure!!
Hello Louise. The authorities might not want to know but there will be others that do. We do, this like minded community of bruised and broken souls, because we know what it is to be exhausted, frustrated and angry, and you just keep going. And if meds work for you, and your son, then I say take them. I told myself that going onto meds was a failure, but I can see now what a ridiculous thing that as to think. I’m off them just now, as I started to not be able to tolerate it, so I am doing as much walking as I can, outside as much as I can, and I have just started a meditation app. It all helps. There are too many stories like ours, and something needs to change. Keep going, we are with you!
Thank you 😊
Also, I should add that I’m not a mental health professional at all, but the auditory and visual hallucinations and the age and sex of your son just struck me so strongly. XO
This sounds like schizophrenia to me. Is that his diagnosis? I am so horribly sorry for the terrible and agonizing suffering your family has gone through. I live in the States and have a lot of health issues, and while I am in general quite liberal, I fear the push for single payer that we are undergoing at this time. I mean, it’s better than no insurance, but stories like yours and Lisas are pretty common, and I am horrified at the thought of it. Single payer is not a magic bullet like I think a lot of people here think it is.
This is so sad. The awfulness of dealing with so much that is profoundly difficult with no life map whilst maintaining a calm exterior for your family and the outside world and then dealing with the silence that comes from not being heard is appalling.
But you do have your voice, we hear you and I say keep writing to everyone you can think of that might be able to make even one thing different, then you will have been truly listened to.
Thankyou Jo. Lets hope so. I am not sure I have the energy to keep letter writing into what appears to be a black hole, which is why I’ve started this blog instead, plus going onto the Board of Healthwatch. Tiny little steps, but they make me feel like I am doing my bit!
Don’t really know what to say Lisa.. it’s an awful situation and I can hear the desperation in your voice and yet nobody is helping you and your son.Thank goodness you are a fighter and like all mothers won’t give up on your babe
Hugs lynne xx
Well you know a lot about what it is to be raging against the system Lynne! Thankyou, you are kind.
Dear Lisa, I had absolutely no idea just how difficult things have been for you and your family.
I truly wish I had the power to wave a magic wand and make it all better for you.
This post has left me absolutely furious that the powers-that-be don’t even have the decency to respond to your letter. If ever a letter screamed ‘we need help’ it is this! How dare they just ignore you!
There is so much to be proud of in this country but our approach to the mental health of our youngsters is not one of them. There has been so much anecdotal evidence that CAMHS is just not coping and yet where is the attempt to fix it?
Sending love and best wishes and hoping that in time your beautiful boy can be healed x x x
Hello Becky, and thankyou for taking the time to reply. I think we only ever see a fraction of what goes on in other peoples families, and only ever what they choose for us to see. That’s partly why I started writing this – I don’t know if you found me via instagram – and I love instagram – but I realised how dangerous it can be in the sense that it can lead people to believe that they are the only ones not having a great life. And the thing is, there are thousands of stories like ours, we aren’t unusual. That’s why I feel so strongly about trying to talk about it. By it being so taboo – it doesn’t get the attention and noise that it deserves, and if we aren’t noisy – the funding will never come. Thankyou so much.
I’m with you entirely Lisa. Instagram is wonderful in so many ways, but it can leave you imagining you are the only person in the world leading a chaotic life with tears, tantrums and a scruffy kitchen!
I so admire you for sharing your story and for trying to break the taboo. All power to your elbow. You shout as loud as you can!
I sincerely hope that AJ gets the help he needs and deserves very, very soon.
Becky x
Thankyou Becky, and I definitely subscribe to the tears, tantrums and scruffy kitchen!! And we are ok, at the minute, better than we have been. You never think you are out of the woods though.
Just incredibly frustrating to read let alone for you to be in it and not get any response – any luck with your local MP?
Hi Jason – I need to be careful what I say here due to my day job (!) but it’s not an avenue I have considered pursuing! I have joined the board of Healthwatch Oxfordshire though so I am hoping to try and work towards some system change locally – the system at large feels insurmountable. Thankyou my friend.
Dear Lisa, sadly your story is becoming all too common, which is why I believe your voice is incredibly important. Having these conversations, stepping on the guilt/shame and building this community will hopefully lead to both an increase in assistance and resources.
Lets hope so! I’m not sure what else I can do, or what the most effective route is to shaking things up. So what I think I can do is let other families know that they aren’t in it on their own.
The silence from the officials is deafening. The general consensus amongst parents is that teens won’t engage with services, they go through multiple Counsellor’s before finding one they trust and even paying privately doesn’t necessarily help. I suspect the only way to target them is during their 9-3 school hours. Start really young with mindfulness, progress to mediation So they learn to problem solve and not to hate their ex best friends in the playground. To learn meditation in PE and to mentor others in year 12 and 13. We could be teaching them to be their own experts, if there was enough money and enough willing from the powers in charge. Perhaps just answering your letter would’ve been a start for those powers that be. Unfortunately they failed to act, it’s almost Corporate Manslaughter! I’ve found the only way to survive this onslaught is to support each other as parents thus empowering ourselves. In the depths of our worst crisis support came from complete strangers and for that I will always be truly grateful. What you and AJ are doing Is empowering others to feel loved and believed and to know they’re not alone. It is enough, you can not do it all. You are enough x
Hello. Thankyou for taking the time to comment, I really appreciate it. I think you have some really interesting ideas here – some read across with the withdrawal of early years services and the impact that has had. I think the idea of teaching them some of this in school is really interesting and I will talk to colleagues at work – however we are as I’m sure you are aware up against issues with the national curriculum and funding. Funnily enough I am just starting out on meditation with little M and he and I are both really benefitting from it – in particular a wind down in the evenings before trying to get to sleep. I hope you are in a better place now as we are for the moment. Lx
Lisa, I am so sorry. I knew he was troubled but I had no idea how much he has suffered and your whole family has suffered. It’s important to remember that many mental health problems are a result of brain chemistry, so it makes sense that medication would and could help, at least some of the time. I was just telling Louise that her son sounded like he might have schizophrenia. I feel the same concern for your son. I would say I’m sure that’s been investigated, but after reading your letter, I somehow do not feel sure at all. I’m sure, however, that you’ve done plenty of internet research and talked extensively with your GP. It’s just that I’m not aware of visual and auditory hallucinations being associated with a lot of other things (though I hasten to add I’m not a mental health professional), and the fact that your son is a young male seems to heighten the concern. I’m glad things are better right now, and I hope they continue to be, and I’m sure you’ve checked all this out allready, but I can’t keep still just in case my coment might help. I believe there is effective treatment for schizophrenia, and sometimes people even outgrow it, I think. There is a book I can’t remember the name of by Kurt Voneguts son, who is schizophrenic, about the onset of his illness. I can’t remember the name of it right now, but I do remember the book. He was older at onset, late teens or early twenties as I recall. I think he’s fine now, though of course his father could afford care for him. That was a long time ago, though, and treatment has come further along the road to understanding, which is hopfull.
I feel like I’m rambling endlessly, please pardon me if I’ve been offensive or officious, and indeed let me emphasize that I’m not a mental health professional, but I’ve done some reading about it, and I used to be a triage nurse, and I’ve had mental health problems myself and so inevitably have delt with other people with mental health issues, so I just felt I had to speak up in case it could help.
xoxoxo
Um. Been doing a bit of current reading. I guess people don’t grow out of it, and TBH I have no idea if Kurt Vonneguts son is fine, it’s been centuries since I read the book and I don’t remember his name so I don’t even know how to look him up. But, I stick with my concern based on what you’ve described. I hope this has been ruled out or addressed.
Hi Sarah. You are neither offensive nor officious, and I really appreciate the time and trouble you have taken to reply to my post, so thankyou. AJ doesn’t have a diagnosis – they seem to be terribly resistant to labelling him – as they put it. At the moment we are in a better place than we have been – although you never stop worrying about what might be to come. So at the moment we have no active input from any services and given our experience I think it actually is a relief just now. The issue of growing out of it, whatever it is, has often been mentioned to me and I have often thought it is quite a trite thing to say. However, he has definitely got better as he has got older, although I can’t say whether or not that is simply coincidence. The issue of litigation is also interesting – there is another incident that I am writing a post about at the moment after which the authorities did say it came very close to triggering what is known as a Serious Case Review here – it felt like it triggered it in any case, but I shall leave that for future posts. I am responding to your comments all in one go here, by the way! We have felt terribly let down by many agencies here, and some individuals for sure. But we have also been supported by some very good people along the way too. It seems to be pot luck. But what I am sure about is that it’s the systemic issues that need addressing – that and the chronic lack of funding. I’m sure most people working in these services don’t want them to be rationed in the way in which they are. I wouldn’t want to walk in their shoes, But nor would I have wanted to walk in my own, or Ajs at times. Thankyou for your time and support, I am truly grateful.
Lisa,
I can’t imagine. This is horrific. My heart is breaking for your whole beautiful family. I don’t even know how to pray for you and yours and hope the Lord understands my groaning on your behalf.
Sending love. Hugging you.
Karen (the American) England
Hello Karen. Thankyou. Things are better than they have been, although you never stop wondering what might happen next. But for today, better. And thankyou for the hug!