The LeDeR of the Gang

Yesterday NHS England published it’s report into the deaths of people with learning disabilities. It was commissioned following the Mazars report that looked into the premature, preventable deaths of people with learning disabilities whilst in the care of Southern Health Foundation Trust. None of this would have happened without the tenacity of Sara Ryan and the Justice for LB campaign.

NHS England don’t want anyone to see the report. They held back publication until 8am yesterday, the day after the local elections and the day before a long bank holiday. They refused to arrange a press conference and refused to put anyone up for the BBC and other media interviews. The report is only 36 hours old but already the link to the content on the HQIP (No, I don’t know who they are either) website has changed at least twice. I’ve posted the current link below but it will probably change again:

The Learning Disabilities Mortality Review Annual Report 2017

You will have noticed if you’ve clicked on the link that you have to give your personal details before you can download a copy!

The headlines of the report are grimmer than grim:

Women with learning disabilities are likely to die 28 years earlier than their non disabled peers. Men with learning disabilities are likely to die 23 years earlier than non disabled men.

1131 deaths were referred to the programme but lack of resources meant that only 103 of those deaths were reviewed. There is no timescale as to when the other 1028 deaths will be investigated or those that will be referred after the reports publication.

Of the 103 reviews, 13% of deaths were found by the review team to be down to:

  1. Neglect or abuse.
  2. Organisational dysfunction.
  3. Delays in care or treatment.
  4. Gaps in service provision.

Anyone who has followed the inquests into the deaths of Danny Tozer, Oliver McGowan, Connor Sparrowhawk & Richard Handley won’t be surprised by these revelations. The data is profoundly shocking but the apathy of the State and the service providers and the lack of care on offer runs through the inquest evidence like chilling veins.

The 103 reviews have highlighted three areas for learning:

1.Inter-agency collaboration and communication.
2.Awareness of the needs of people with learning disabilities
3.The understanding and application of the Mental Capacity Act (MCA).

No shit Sherlock. Anyone from the widest periphery of the social care world could have identified those three areas. And am I the only one who finds the “awareness” item really offensive. We need to be aware of potholes in roads, lumps in our testicles. Do we really need to be reminded to be aware of other human beings?

Sara Ryan appeared on the BBC Breakfast sofa and shook the truth stick at Charlie and Naga with a righteous ferocity. She gave us the most distressing but powerful and truthful statement of the day: “Anyone who is classified as having a learning disability must now be seen as having a life limiting condition. They are not sick”.

The contemptuous behaviour of NHS England since yesterday validates the truth that Sara uttered. They do not care. The State and its laws do not touch learning disabled people. They are less than human so shouldn’t expect humanity.

It took me several attempts to read the LeDeR report. I got 2/3rds of the way through and had this overwhelming desire to give Steven a hug. I don’t normally see him on Fridays, so he was a bit startled when I turned up, interrupting his Men Behaving Badly marathon. I thought about his diagnosis of a nonalcoholic steatohepatitis liver three years ago and the complete disinterest of most of the professionals to this life threatening condition. (“Would you like another referral to the dietician?”) Medication given to keep him quiet and stop him singing when he was in the Unit caused a 15 stone weight gain. He nearly died and isn’t out of the woods yet.

One last horror thought hit me last night. I was listening to some music and the Blur track, Country House came on. It took me back to the year it was released, 1995, the year Steven came to live with us. Then, Bang. 23 years ago. Everything that has happened in our lives since Country House never happened.

It couldn’t have done. We are learning disabled.

We are dead.



11 thoughts on “The LeDeR of the Gang”

  1. Thanks for this post Mark. Just a note that it is (or at least was) possible to download the reports without entering personal info – they just wanted you to think it wasn’t! For disappearing, changing, moving web pages, this is a useful little tool:

  2. Thankyou.So true, every day Im grateful to have my boy home but every day remains a great challenge.There are not the supports out there for families and often the professionals whose voices also go unheard /ignored by the higher powers that be.

  3. I’ve been telling all professionals that my son’s new disability has just deteriorated as in the last 6 or more weeks he is acting oddl.
    This new disability didn’t exist while in my care at home, and no special help has happened apart from my efforts. I’m so busy caring when I’m with him, I can’t even grieve, but still no response from social workers or anyone really to the latest change is disorientating me – I feel as I’m talking to myself when no one acknowledges.

    No reassessment suggested, mostly silence from the care provider whose staff noticed change but said nothing, and social workers just haven’t asked further. If anyone else had the same condition deteriorating there would be urgent action..
    One professional and GP usually take an interest. I must take it up today with the surgeon who always responds and copy everyone.
    This news article has helped today.

    We are what CIPOLD call ‘significant people’ in our children’s lives, whatever their age.
    We must stop being hindered from caring after age 19, as normal people care for their own exactly as they like for as long as they like.

  4. FF2016 I really feel for you.

    It is so stressful when people who you expect to listen to your concerns just turn away and ignore your distress. So bloody cruel. Nothing hurts more for a parent than to see their loved one deteriorating. Nothing hurts more than the apathy shown by the NHS doctors who refuse to answer your questions.

    I hope you get answers and action soon.

    1. The doctors are at the moment the good guys in our case, Pauline.
      It’s care staff and social workers who don’t document or even discuss changes, and in fact don’t answer me in writing.. It’s weird.
      We’ve seen doctors, usually, because I arranged it.

      Bad care like this ultimately leads to early death – with continuous suffering – why should anyone have continuous suffering?
      People who are paid don’t follow up.
      This is why families are the ‘significant people’ that the CIPOLD report talked about.
      I imagine a lot of frontline staff saying that they ‘didn’t know’ the person was unwell or that they ‘hadn’t noticed (this or that)’ or that they ‘weren’t on that shift to know (this or that), or if anyone had made an appointment’, etc. Too many stories to listen to.
      I’m usually left reeling.

  5. One thing that is real is the huge profits being made from the care of the learning disabled ,see Winterbourne view/Cygnet/Cambian. and what venture capital pays for the care provision. No one asks why such huge amounts of money are being paid for such abusive, inadequate care that causes such suffering and death all policy ed for on the lie of a disabled’s independence in community living.

  6. Just a few days after publication of the LeDeR Report, Southern Health NHS Foundation Trust (a.k.a. Sloven) presented its ‘Future plans to develop our Secure Forensic Mental Health and Learning Disabilities Services’ at a public meeting. There is a report, architectural drawing etc. at You can leave comments on the blog or, if preferred,there are email links to the Chair and CEO.

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