A breach too far

I’ve spent the day since talking to the Nursing and Midwifery Council (NMC) at lunchtime shaking uncontrollably, swearing and raging, laying on the settee in silent tears and, for the last two hours, drinking beer and now wine. ‘Luckily’ we are on annual leave so I can do all these things.

I think it’s fair to say that since Connor died we have been treated in a remarkably consistent and appalling way. We’ve had no equivalent of a police liaison officer to help us pick our way through the wreckage of his death and our shattered lives. We’ve had no support, kindness or understanding from any of the organisations implicated in his death (the Trust, the county council, the clinical commissioning group, NHS England or NHS Improvement).

Instead we’ve been smeared, pissed and shat on in extraordinary ways.

In addition, we’ve been expected to attend numerous meetings with the ‘great’, good and mediocre to try to improve practice. All at our own expense, all in our own time and not one single meeting held in Oxford where we live. We have been chewed over, sucked dry and spat out.

I think we’ve behaved pretty well in the circumstances. I’ve only started using the word cunt regularly in the last few months or so. It trips off my tongue now. Rich has stormed out of the odd meeting or raged down the phone to the odd Chief Inspector or two, but in the circumstances small fry really.

We’re a family, like so many others, who have experienced the worst possible happening; the preventable and brutal death of a beyond beloved son, brother, grandson, nephew, cousin and friend within the hallowed walls of the NHS. A young man with his whole life ahead of him, discounted as human because he was labelled as learning disabled.

We’ve sucked up delay after delay, obstruction, deceit, denial and mother-blame on a scale that is more than enough to generate long term mental ill health. We’ve battled on with remarkable support from many people. Dealing with the death of a child is horrific. Dealing with the accompanying shite and recriminations that come with the bullying, defensive and self obsessed practices of public sector organisations (and individuals therein) which have failed, is simply brutal.

Today I was told, after an opening filler of no substance whatsoever, that the NMC had ‘accidentally’ shared our personal details with the six nurses under investigation back in November 2016.

There was no whiff of an apology until I asked for it.

A couple of hours later, when I was able to speak, I found out that this data breach involves:

Our home address, my mobile number, email and bank details, my mum’s name and phone number, Connor’s date of birth, NHS number and his dad’s name and phone number.


The redaction policy of redacting personal information had been ignored when it came to our personal information. There were other redactions. From this, we can only infer that we, like Connor, were discounted as human. How else can you redact some personal information and not others?

This apparently came to light on June 26 2017. Over two weeks ago. Five out of the six nursing staff (or their counsel) were contacted by email on Monday with a request to destroy or return the disc containing this information. Four out of the five have apparently acknowledged receipt of the email with no accompanying action. The sixth staff member who only has a postal address hasn’t been contacted yet. The NMC haven’t bothered sending a letter.

Our personal information is still out there live and kicking.

The senior member of the fitness to practice team I spoke to after the first call spouted root cause analysis and learning shite after a delay of an hour between calls while she bothered to get the relevant information to hand to answer my questions.

I can’t articulate this violation other than in tears. A flood. The level of contempt and disrespect is generating weeping in a way I thought we’d kind of crawled beyond. A return to the Sooty tears. Almost worse in some ways because it is so fucking wanton.

The basics here – like don’t leave a patient with epilepsy to bath alone in a locked room and redact the personal details of the dead patient and their family when sharing information –  don’t need investigation or root cause analysis.

And the tears kick in again.



22 thoughts on “A breach too far

  1. We’ve had an overlong, nasty dose of this level of deeply offensive treatment already and we’re only just getting started on the home run.

  2. When will this end? Where is humanity? What kind of people do they employ who can make mistakes like this. So so angry and sad for you xx

  3. Pingback: A breach too far | idealisticautistic

  4. My heart bleeds for you. What is the matter with these people? They don’t seem to understand that they are public SERVANTS, meant to serve US, not defend their institution.

    We are waiting for documents from the Health Board that the Coroner agreed we should have last December. Everything is a fight and the family has to do this while grieving for their loved one. It all disgusts me.

    The police have admitted that their so-called investigation into how my brother broke his neck was not good enough and are now reinvestigating, two years down the line. But this has only happened because I lodged a complaint.

    Thinking of you and all that you are going through.

  5. Police said to me that my son was an unworthy witness, unworthy because he had Autism and non-verbal so they didn’t pursue the assault which has resulted in my son having 17 surgeries. The male support worker worked on zero hour contract he refuses to give a statement so we can’t subpoena him to give evidence at the trial which should be in September – the support worker is not on the electoral roll, in fact, he is a man of mystery I don’t believe he was CRB checked and all this is within the law. He had also received no training, in fact, you could say the agency just got him off the streets and placed him with my son.
    The system is corrupt as are the people who work within it – ‘must protect the system at all cost and if a disabled person is assault or dies within that system they have the attitude so what they are of no substance.
    What the establishment can’t cope with is our ‘Womanhood’ they want us to become small and go away this is never going to happen.
    My love and solidarity to you Sara as always from Liverpool.

    • Well spoken Joedd. Our children are the victims of a self indulgent system and we mums (and fathers) are victimised for doing our role well against all the odds – dishonesty, avoidance, delay, inadequate communication, witch hunt, blame culture, lack of clarity, lack of resources, disrespect and on and on and on…. Some of the worst traits of human nature manifest themselves where it involves vulnerable people and the families who love them .

      • Spot on danutag57
        This corker is ‘just’ another clonking great cock up..conspiracy is left for all the other days where all cock ups are compounded by …….them… just not giving a toss.

  6. As a registered nurse I can only apologise on behalf of my professional body. What you have experienced is appalling beyond words – and they hold fitness to practise hearings!

  7. I’d inform the police and bank, in case your details are misused, and change your accounts, etc.
    The person responsible who sent your personal details out should be identified and dealt with under the Data Protection Act as it’s a serious matter. But how many mishaps must you deal with?

    I’m sure there’s a legal case here, but it seems this Trust can’t deal with anything decently.
    As I was saying on another blog, these people aren’t professional or expert. How can anyone be in their care? They laugh at families, but protect their own.

  8. Sorry to hear that you have become yet another victim of the NMC Sara. That lot are irretrievable. I was violently assaulted by a male healthcare assistant in the Hergest Unit in Bangor, north Wales, some years ago, witnessed by the nurse in charge of the ward, one Sian Ruth Lloyd, who was verbally threatening and abusive to me herself. I asked for the police to be called to report the assault, she refused. So I tried to ring the police on my mobile – it was snatched away from me by the HCA who had assaulted me. I requested the police repeatedly for days, it was refused. I was not released from that – locked – ward until the bruises had faded. My lawyer and I complained. Lloyd and the HCA refused to answer or questions or meet us. They were protected by the NW Wales NHS Trust which ran the unit at that time. The Trust never investigated the assault. I made representation to the NMC about Lloyd – I couldn’t make representation about the HCA because he wasn’t on any register. I waited ages for a response so I rang them to see what was going on. On the first occasion my call was handled by a woman called Rashida Conroy who was incredibly rude and sloppy and actually asked me ‘whadda ya want?’ On the second occasion I was met by a phenomenally aggressive man who did not identify himself but told me that ‘when’ Lloyd was cleared the evidence that I sent them would be destroyed and there would be no appeal process. I subsequently was told that my complaint about Lloyd had not been upheld.
    I later found out that there had been many complaints about the same HCA whilst he worked under the supervision of Lloyd – like me, a number of other female patients had woken up at night to find him in their rooms when he shouldn’t have been. I then discovered that Lloyd had only qualified a matters of weeks previously and should never have been left in charge of that ward.
    The Hergest Unit was notorious for deaths and complaints of assault.
    The NMC needs abolishing and a major investigation needs to be launched into their activities and prosecutions for negligence mounted. They are so bad that it cannot be accidental – they are undoubtedly concealing the serious abuse of patients and of course are notorious for the persecution of whistle-blowers, which is something else that they have managed to do in north Wales, to a nurse who blew the whistle on one of the biggest EMI scandals in the country. The ward was closed down, serious abuse of patients was admitted, there are two inquiries currently ongoing. The nurse who made the undercover recording – because her previous concerns were ignored – was suspended by the NMC. Not one other member of staff was disciplined.
    All you can do Sara is blog and publicise what they are actually doing to people – it was the only path left open to me when I discovered that not only was the most appalling abuse of patients taking place but that it was connected to the local psychiatrists concealing a paedophile ring operating in the children’s homes in north wales.
    I am sorry to say that the law offers us no protection.

    • You’ve got stamina, Sally. It clearly isn’t ever just people with autism and ld who need help.
      I’ve always admired Wales, and your current leader of the Cymru party seems real. I hope activists in Wales are following this.

    • Sadly Katy, Sara, who is very obviously exposing serious patient neglect/abuse and associated corruption in the NHS, may find that the ICO suddenly becomes as hopeless as the NMC, GMC and everyone else. I recently made representation to the ICO about the Health Board in north Wales documenting that I’d been convicted of a number of serious crimes and had even served a prison sentence when I haven’t; ‘losing’ 20 years worth of my notes and telling me that these notes don’t exist; another person’s medical records being sent to me after I requested copies of my own and personal medical data relating to me turning up on somebody else’s GP files, social service files and even police records in England! The ICO have taken no action. Neither have the Health Board. My lawyer has sent me copies of the records that the Health Board have said don’t exist – she obtained them from another sources a few years ago. I can prove that I have never served a prison sentence and have never been convicted of the offences that the glorious NHS staff all loyally documented that I had been convicted of. No-one will investigate. It is beyond bizarre. So I’m blogging about the whole bloody lot, I’ve kept copies of all the records that the Health Board maintain don’t exist and should anyone accuse me of libel I’ll show them the sodding evidence myself. The records that the Health Board maintain don’t exist contain evidence of serious criminal activity on the part of NHS and social services staff, which is no doubt why they’ve disappeared.

      • My experience is that the ICO do as much as they can within their remit. The problem I had was twofold.

        1. They will make recommendations to Data Controllers but it is not within their remit to take legal action on individual cases unless a criminal offence has been committed – most of the offences under the DPA are civil, not criminal offences. We cannot blame the ICO for this – it would require legislation to change the remit.

        2. I cannot speak for the NMC but Sloven effectively put two fingers up to the ICO anyway – I wrote to the Department of Health, who ‘own’ NHS data, but Sloven took no notice of their recommendations either. I then escalated it to the National Audit Office and to Dame Fiona Caldecott (National Data Guardian) – at which stage Sloven gave up and I finally received my data circa 880 days after submitting a Subject Access Request!

        Dame Fiona Caldicott MA FRCP FRCPsych, National Data Guardian, 4th Floor
        Vantage House 40 Aire Street Leeds LS1 4HT (Fiona.Caldicott@dh.gsi.gov.uk).

        Dame Fiona replied in person.

        The only other solution is to take Civil Action in the County Court (small claims track limit £10,000).

        For more help, please contact via https://999crash.wordpress.com/contact-2/ .

  9. It is a disgustingly sad reading everything above and your story Sarah. I am sobbing as I am writing. I had a bad-brutal experience recently, being treated arrogantly and pompously. We do not matter as long as they got what they wanted They do not listen, just follow their agenda (ILF and Authority) We have no energy left to fight them. They have to tick the boxes and fit in to their plan. The box we shall fit in is the wooden box, because we are exhausted,tired depleted and worn out.
    and my daughter? she will not survive in that system more than two weeks if that.
    Well said Joanna Crook and Danutag.

  10. Pingback: The bleat action continuum | mydaftlife

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