I spoke to my GP on the phone on Monday (practice process). A GP really. Not my GP. Or maybe she is my GP but she left the surgery today. I’ve not met her before. My GP dropped our family from his too-busy list a good two years or so ago.
“Would you mind giving me some context as to why you may be experiencing these symptoms…?”
“Er, well our son died four years ago…”
“Oh, I’m sorry. Can I ask how he died?”
“He drowned in a hospital bath.”
“Ah. I’m afraid I can’t hear you properly. The line is terrible.”
“He.drowned.in.an.inpatient.unit.”
“He drowned?”
“Yes. On the Slade House site.”
“Oh. I am so sorry to hear that…”
And so the tale unfolded. Today at a face to face appointment I was diagnosed with post-traumatic stress disorder (PTSD) and signed off work. ‘Treatment’ options are anti-depressants, a mental health intervention of some vague shape (the referral will take up to 6 weeks) or bereavement counselling.
I’m left both unsure and un-reassured how PTSD can be treated when there is no ‘post’ in sight. Is there an ongoing version? The various disciplinary processes are set to stretch well into next year.
Our legal team strongly suggested Rich and I went to see our GPs a good year or so ago, saying how damaging the process is in the long term. No, we both said. This thing ain’t gonna lick us. That was without reckoning on Richard Partridge’s brutal, cruel and unnecessary take down at the GMC tribunal in the summer. Or the Nursing and Midwifery Council being so incompetent they shared our personal details (including my bank details…) with the six nurses and their advocates under investigation around the same time.
I’m writing this in part to underline to other families how the processes involved in gaining accountability in the NHS are lengthy, destructive and deeply harmful. With little in the way of protection of or care about your health and well being. The best you can expect is a support number to ring and start again from scratch. Telling your version of the ‘four years ago our son…’ story to another person. With all that entails, demands and saps. Somewhat ironically, you cease being a patient when you enter the terrain of NHS investigations and become something else. I’m not sure what.
The mental health referral is underway (I think). In early January I have to contact the surgery and speak to a GP (who may or may not be my new GP from today) on the phone. And repeat the above exchange.
There is so much that could be done so differently here it leaps off the page. But it ain’t our job to spell it out. Again. Why don’t some of you – occupying very well paid senior roles to do so – crack on and do it?
Update: Someone from the Mental Health team rang me yesterday evening and asked for symptoms rather than story. [Thank you.] I’m going to have an assessment next week. (Thank you for the messages of support, advice and information which are much appreciated).
So sorry to hear how poorly you are and I do hope that someone good could try and help
I wonder about someone like Salim Rajak who is an amazing and compassionate consultant could advise you on what they suggest
I’m sure he would ring you
It is no surprise that you have been made so ill
I broke down at work yesterday when I started telling the story “Nearly three years ago my brother broke his neck…” to a colleague who knew nothing of the events. I really feel for you and it’s so, so disgusting that we as families have to fight for the accountability of Health Boards.
I can only speak from my own experiences of being treated for trauma and hope it isn’t this bad everywhere, but please be very careful, it sounds like you’ve got a lot of support so do be wary in case whoever they refer you to starts trying to justify the shite you’ve had from services, it may be more than their job is worth to ackowledge it even if they seem supportive at first. 😦
Every time I read your posts Sara I want to say how much I feel for you and your family, how courageous you all are, and how much I respect all that you have done and continue to do. I’ve not sent in a comment before, but reading your post tonight I felt I had to. Our family was recently involved in making a claim of serious clinical negligence.The NHS Trust concerned eventually admitted full liability stretching back 50 (yes fifty) years. I’d worked all my life in the NHS and I would never have believed that such a culture of institutional denial and arrogance existed had I not experienced it first hand as a complainant. You have to have been there to understand. It was dreadful. Please take care. Sending you these warmest good wishes over the air waves.
I’m sorry you are feeling so unwell Sara. That Richard Partridge and Valerie Murphy’s previous barrister should be ashamed of themselves – so called professionals. They had no need, or right to make you feel worse.
I am glad you have been signed off work. And can just stop pushing yourself so hard for a bit.
Take good care of yourself.
Sara, you and Rich have been my heroes for so long, I cannot bear to think you are so battered as to become ill. How can I help? I worry that your ‘treatment’ may make things worse.
whatever u do do not go to see a psychiatrist or u will end up formed under the act
been in ur situation has taken four years to even vaguely get better maybe a good clin psychologist if you can find one,rest,meditation,tapping,supplements,write a wellness recovery action plan ,yoga more meditation,narrative therapy massage reflexology go for a proper holiday not for work,do not take any fucking psych meds..thinking of you all from australia with much love
Sara – deeply troubled if (in a way) unsurprised by the diagnosis. I make three observations here:
1. A referral should not take six weeks.
2. If a psychiatrist is recommended accept it – but check his/her credentials.
3. This may be controversial but don’t dismiss psychiatric meds out of hand.
Will write something more personal by email later today.
Meanwhile, take care.
Mr Maslow’s hierarchy of needs.
I remember them from way back from my earliest days days as a Psychology undergraduate. A lifetime ago.
When I retired I was probably sitting near on the pointy bit of his pyramid. Pretty well actualised. Fairly sure of who I was, and fairly well shod, fed and housed.,
Then – a beloved beautiful son or daughter is broken forever or dies from incompetence, try to find answers. Are forced to wade thigh deep up stream into the steady gale of sharp stones – of – ‘who do you think you are’.
Step off blindly; hoping for answers and a ‘sorry’ at the very least.
Hope gets lighter, while pain, grief and anger, and stealthy thief of self…. fear, weighs more and more.
‘We – ‘us’ – who ‘we are’. recedes – and ‘our’ health is broken – is stolen…is left abandoned by the people paid to care for us and our lost child.
The ‘cure’ is rest – i taking time to reclaim who we are. Validated.
And offering our voice and our arm. – to all the ‘others’.
Weary and standing together.
Tall’ish… then tall.
KNOWING who we are.
And Proud.
.
xxx.
.
We take each day as it comes – but My mojo left when our boyman slipped away. Each day a tear. Each day a smile. Each day a searing pain. Sending love hx
So sorry to read this, but not surprised after the brutal treatment you have all received.
Take time to be kind to yourself, to remember who you are. Try out the various offers of help – if they don’t feel right, walk away, you can always go back and try it again some other time. You’re in control and recovery isn’t linear.
I am amazed that you have managed to stay strong for so long xxx
As Helen Daly says, tears and smiles both (are normal). If only tears, that’s when meds can help – take or leave them if you don’t like them.
I didn’t suffer as much as you, but my son lost home and family life (we aren’t family without him, still need him as he needs us, and one day I will have him back). He lost his health physically and mentally, injured himself irreparably.
Even in all this, regular set prayers settle my thoughts briefly, walking, talking to my daughter when possible, cooking, reading and listening to music from my teenage years onwards.
Getting treatment for my own neglected needs is helping – as the best part of the NHS was surgery in hospital for four days – a wonderful eye opening experience – like yours was.
My surgeon gave me a painkiller that also put me to sleep – that helped incredibly for 2 weeks – he emphasised ‘me time’.
I had had citalopram (low dose only) for 3 months or so, during a dip 2 years ago, and it helped. The GP sorted that, psychiatrist wasn’t necessary.
Friends like CRASH sound good – I’ve also got a true friend to talk to.
Thanks FF2016 for your kind comment.
Sara: whatever happens DONT LET THE BASTARDS GET YOU DOWN. Whatever they try on, think “I am too good for this” (which you are) and think what you have achieved, and stand up proud. Think of all of us who are behind you.. The adverserial attitude of the barrister is well known to all of us who have had anything to do with the courts, if they can break you they will, in any circumstances. How dare they, how can the justice system allow this? A personal tip, from my long years of experience – try shutting down, and look at what they are doing objectively – see what they are doing and never demean yourself by entering into their linsanity. And always allow yourself to grieve Hope I dont sound patronising!
remember the quote about going on a long journey to find yourself well i’ve been on mine. What i found was lies,deceit,lost records,indifferent regulatory bodies,negligence,mother blame unlawful restraint,ministerial indifference. what i came back from this shit journey with was the absolute certainty that there are no ‘good’ psychiatrists or decent healthcare as ever loose application of the word care! if you have found a decent professional you r very lucky bind them to you with hoops of steel. my Gp has been amazing and i salute him for his dedication and compassion.
There will be no justice for my boy not through want of effort on my part but because the system will not give it. and has no interest in giving it .Organisational reputation and protecting rubbish employees are the the core primary mandates of all of these bodies. The journey has been filthy,dark and deep but i am left with no expectations of any justice.goodluck Sara as you go forward with this.my northern Irish friend Ann always says ‘not a journey ye would fuckin pay to go on’
So sorry to hear that they have crawled into your psyche. I know that we never go down willingly, and their wishes if tearing you down are coming to be. So now, it’s that toughest of battles, overcoming a situation that cannot be quantified.
How insensitive then, that the system expects you to repeat your story, again, and again, and again, when you are seeking help to get well! I have always lothed that bit, and I am at a loss to understand why people in the NHS cannot understand how hard it is to relate a sensitive matter time and time again. But we are where we are. I usually insisted on a face to face for such conversations. But it was while I had a good GP. I am not sure about the one I have now.
I found keeping myself busy very helpful to my recovery. And the best contact I had during my journey was one of my fellow ‘victims’, whose insight helped me get some answers to my trials.
The best thing I learned was that, just because someone has said something about you doesn’t make it a fact! No matter how they look down on you, how they ask you very insensitive and personal questions, you are who you are! After all, we don’t know if their motivations dovetail your own good ones.
Those who know you, look up to you anyway. Finally, your mental illness doesn’t define you, no more than my fracture does not. Those who pretend it does need their heads examined!
Stay well and above the fray.
The only response I received which recognised i just might, just might be sad was an email from the provider’s chaplain. I will keep this short as at risk of writing a book! I was gobsmacked by the insulting reponse from people with high incomes courtesy of public funds were too apathetic and too ruthless to take responsibility and confront the fact head on, despite warnings, that innocent people were being treated like cattle every day of the week. I was far too wrecked by the realisation that what i knew was a crime, they assumed was a natural death. Or not. Anger just doesn’t describe the intensity of those very justified emotions but the poor innocent chaplain didn’t deserve what I would have said to him. So I didn’t respond. I had a call from Cruise, and not sure how they knew or found me. Their response to my disclosures were they couldn’t see me as they didn’t provide the level of counselling that i needed. I was refused by Cruise. I didn’t know what I had. I found a counsellor via a local carers support service. At the first session she said she couldnt offer me counselling as it was impossible. We had to wait three weeks and still my speech was racing ahead to get it all out. I discovered she was a childrens counsellor and she wasn’t sure what autism was but i was grateful for the discount, having no income as I had stopped working to support my sib. That was 10 sessions of talking but I was still traumatised. My GP explained it was reffered to as ‘Pressure Speech’, a consequence of Post Traumatic Stress Disorder. That would explain why I found i was too anxious to drive out of area and live a normal life. As a lifelong low user of the NHS, rarely ill I can’t remember the last time I’d had a cold. I’d never had flu and I avoided paracetomal if i could manage without. I was handed a prescription for sertraline (still advised to continue) and zopiclone. I was sleeping about one or two hours a night accompanied by nightmares. Next was a CBT NHS therapist at the local surgery. At last, someone who understood how cruel the system is to people with autism and learning disabilities. She got it and knew it. Lots of empathy and careful monitoring but PTSD still there. Thanks to my other half, who had to be a brick wall for so long to survive me talking at him, going over and over and over every incident of abuse I had witnessed and reliving the details of the blatent daily breaches of human rights I recorded and those people who did what they did, so cruel, so alien and monstrous. Imagine witnessing people who need empowering themselves displaying a warped sense of power over the weakest and innocent. That was a recurring theme in that house. I’ve witnessed abusive practice in care homes but not like this. The sequence over too long a period of time – Bedlam – as described to me by a professional, The worst horror i’ve experienced in my life. Without legal representation I don’t know how I would be now. No one should ever have to deal with what was in essence long drawn out cruelty and torment against their own flesh and blood. What I witnessed was disgusting. Now onto my third counsellor. They say time heals but does it when the instigators of systemic appalling care and avoidable deaths walk free and an innocent person has had their life robbed.
Our thoughts and prayers are with you.
Martin
I know it’s very very painful. Sending love and strength from New Zealand.
Hang in there Sara — you will get through this. I remember interviewing Lorna Wing many years ago, who described the parents who founded the NAS when they had been rejected by even the association for ”retarded” children as “toughies.” What you are going through now is tied to their struggle by invisible strings – mother-blame, devaluation of disabled people, self-protecting systems. But I do believe you and this process will also make a difference.
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