Thursday, 4 February 2016

Premature Death Stats & Learning Disability

Learned of a worrying PQ recently regarding a new NHS Outcomes indicator for premature death in those with learning disabilities.

The indicator for premature death for NHS patients is 75.

What this means is that if people die under NHS care before the age of 75, it has to be counted as premature and it affects the NHS Outcomes stats. The stats are there to help the NHS strive to keep everyone alive until at least that age.

There was not previously an indicator for the learning disabled, because they are just people, so why would there be?

However, an inquiry found that the learning disabled die on average 15 years earlier than the rest of us. This inquiry, which flagged the stat as a *concern* has been used as a means of separating learning disabled people out from the general stats, lowering their premature death indicator to 60 - below that of cancer and diabetes sufferers - making it the norm and then, in all probability eventually championing creating an indicator and celebrating the twisted stats it produces.

Below is the text of the PQ raised in Parliament.

This has not been settled yet so there is still time to lobby it. Learning disabled people's lives matter. They should not be expected to die earlier with no effort made to improve their outcomes and worst of all, their reduced life spans celebrated in falsely glowing stats. Write to your MPs please:

Q Asked by Chris Heaton-Harris (Daventry)

Asked on: 21 January 2016

Department of Health

Learning Disability: Death 23638

To ask the Secretary of State for Health, for what reasons the age at which the death of people with learning disabilities is classified as premature has been set at 60 in the draft NHS Outcomes Framework.

A Answered by: Alistair Burt Answered on: 28 January 2016

The Department worked with Public Health England (PHE) and the confidential inquiry into premature deaths of people with learning disabilities (CIPOLD) team at the Norah Fry Centre, University of Bristol to define the learning disability mortality indicator in the NHS Outcomes Framework. The placeholder indicator was set at age 60 based on the findings of the CIPOLD at the time which identified the mean age of death in people with learning disability as 60 years old.

The Department, NHS England, PHE and the Norah Fry Centre are currently reviewing the definition of the indicator to establish if there is evidence to support it being redefined and to establish a robust and stable data source in order for the indicator to be reported and measured.

4 comments:

Christina Martin said...

If you have the time and inclination I have knocked up some draft text for you to send to your MPs on this:

Dear

I write to you as my local MP regarding the proposed changes to the NHS outcomes indicator for measuring premature deaths of those with learning disabilities.

These were raised in a PQ on 21 January, at the footer of this email.

As you will know, the indicator for premature death for NHS patients is 75. So if people die under NHS care before the age of 75, it has to be counted as premature and it affects the NHS Outcomes stats. The stats are of course there to help the NHS strive to keep everyone alive until at least that age.

There was not previously an indicator for the learning disabled. However, an inquiry found that the learning disabled die on average 15 years earlier than the rest of us. This inquiry, which flagged the stat as a concern has been used as a means of separating learning disabled people out from the general stats and giving them a lower premature death indicator of 60 - below that of cancer and diabetes sufferers.

No media outlets seem to be covering this very worrying proposal which, it seems to me, seeks to normalise, and even laud as a statistical win, the early deaths of learning disabled people.

I know that they are still considering this so I would be grateful if you could please raise this with Jeremy Hunt before it is finalised.

Thanks and best wishes

------------------------------------------------------------------------------
Asked by Chris Heaton-Harris (Daventry)
Asked on: 21 January 2016
Department of Health
Learning Disability: Death 23638
To ask the Secretary of State for Health, for what reasons the age at which the death of people with learning disabilities is classified as premature has been set at 60 in the draft NHS Outcomes Framework.
A Answered by: Alistair Burt Answered on: 28 January 2016
The Department worked with Public Health England (PHE) and the confidential inquiry into premature deaths of people with learning disabilities (CIPOLD) team at the Norah Fry Centre, University of Bristol to define the learning disability mortality indicator in the NHS Outcomes Framework. The placeholder indicator was set at age 60 based on the findings of the CIPOLD at the time which identified the mean age of death in people with learning disability as 60 years old.
The Department, NHS England, PHE and the Norah Fry Centre are currently reviewing the definition of the indicator to establish if there is evidence to support it being redefined and to establish a robust and stable data source in order for the indicator to be reported and measured.

Christina Martin said...

The response from Jeremy Corbyn's office might be one of the worst pieces of MP correspondence I have ever seen:

"Dear Christina,

Thanks so much for writing to Jeremy in his capacity as Leader of the Opposition about the NHS.

At this point in time his mailbag is so huge that he has asked me to reply on his behalf.
The NHS is being badly let down by this Tory Government, and patients are paying the price. Under the Tories, it has become harder to see your GP, waiting lists are longer, and hospitals have been plunged into financial crisis – faced with a stark choice between balancing the books and delivering safe care. The NHS is under pressure as a direct result of decisions David Cameron and Jeremy Hunt have made. They have put more pressure on hospitals by stripping back social care, created staff shortages by cutting training places, and forced through a damaging top-down reorganisation which wasted £3bn and harmed patient care.

Under David Cameron, NHS waiting lists have risen by almost one million, thousands of cancer patients are waiting too long to start their treatment, and many hospital wards are dangerously full and under-staffed. But rather than taking action to repair the damage they’ve done, the Tories are failing to learn from their mistakes. They have no plan to tackle the financial crisis facing the NHS and social care, and their plan to impose a new contract on junior doctors risks taking us back to the ‘bad old days’, with doctors too exhausted to provide safe care for patients. You can’t trust the Tories with the NHS.

Thank you again for your email. Contributions like yours are vital as we look to build the policies to win the next election so we can stand up for working families and build a better Britain. You can get involved in the debate and find out more about how we make policy at www.yourbritain.org.uk.

If you’re not already, I’d encourage you to like us on Facebook (facebook.com/LabourParty) or follow us on Twitter (twitter.com/uklabour) so you can stay up-to-date with breaking news.

With kind regards,

Laura Repton
Communications Agent
The Labour Party"

Completely irrelevant, not offering to do anything about it and asking for a facebook like.

The new politics there.

We are doomed.

Christina Martin said...

Got a reply from Alistair Burt, further to my MP sending on my correspondence with a note.
He informed me that they are now currently reassessing the indicator. There is every chance it will be changed to 75 as a result.
He put a little hand written note on the letter, which working in a government body correspondence unit myself, I know is something they rarely bother to do.
It said "A thoughtful inquiry from Ms Martin. I hope my reply is reassuring"
Nice.
Must be a sedate change from the slew of 38 degrees stuff.
So thanks for nowt Jeremy and team.
Not sending policy queries to the relevant departments means they don't get seen by the people who can change them.
And weirdly thanks very much to the Tory MPs that respectively raised the PQ, forwarded my correspondence and answered my enquiry.
And didn't request a Facebook like between them.
The world really is turned on it's arse these days.

Chris Wilkins said...

Awesome Christina, you may have changed their policy. More power to you.