NE Family Carers Network Presentation April 16

8/16/2019 NE Family Carers Network Presentation April 16

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www.england.nhs.uk

North East and Cumbria

Learning Disability Network

Reducing premature mortality

of people with learning

disabilities

Judith Thompson, NE&C Learning Disability Network Manager,


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Learning Disabilities Mortality Review

(LeDeR) Programme

Pauline HeslopProgramme Manager

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Key Programme aims

• To drive improvement in the quality of health and social care

service delivery for people with learning disabilities.

• To help reduce premature mortality and health inequalities

in this population.

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.

Geographic ‘footprint’

NHS England architecture,

basing the work in four

regional teams (London,

Midlands and East,

North, South).

NE& C identified as the firstnational pilot site


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• Local reviews of deaths

• Series of additionalprojects

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Two key elements of the Programme


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Local reviews of deaths

Purpose:

To help health and social care professionals and policy

makers to• Identify the potentially avoidable contributory factors related to

deaths of people with learning disabilities.

• Identify variation and best practice in preventing premature

mortality of people with learning disabilities.

• Develop action plans to make any necessary changes to health

and social care service delivery for people with learning

disabilities.

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www.england.nhs.uk

Initial reviews - results

26 initial reviews – 15 men, 11 women

Ages at death ranged from 24 to 88 (median 54)

Capacity rarely mentioned (7/26) or tested (


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www.england.nhs.uk

Issues for North East and Cumbria

• Capacity – Regional Co-ordinator, Local Reviewers,local participation in review process

• Steering Group – established. Overseen andmanaged by Learning Disability Network but broader

membership required• Regional accountability arrangements – QSGs?

• Local governance arrangements – SABs?

• Aligning & embedding with other functions/bodies e.g.

safeguarding, Serious Case Reviews, Child DeathOverview Panels?


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www.england.nhs.uk 11

Local context – Expected numbers of

deaths of people with learning disabilitieseach year

NHS England Local Area Age 0-17 Age 18-

74

All ages

Cumbria and the North East 5 164 220

England total 78 2,209 2,976

These are estimates of people with learning disabilities identified on GP

registers.

On average, in England, we estimate that half as many people with learning

disabilities die each year than children aged 0-17.


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www.england.nhs.uk

The BIGGEST challenge ….

Information sharing …. Why? …. We share informationfor other issues eg Serious Case Reviews

The GMC makes it clear that confidentiality is animportant duty, but it is not absolute. Doctors candisclose personal information if:

• it is required by law

• the patient consents – either implicitly for the sake of

their own care or expressly for other purposes• it is justified in the public interest


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www.england.nhs.uk

What are we doing about it?

• Section 251 agreement pending

• Bespoke locality support from the LEDER team

• Wide range of supportive materials developed for use

across the health and social care sector• Information on the BMA, GMC & RCGP website

• Guidance from local Caldicott Guardians

• Steering Group discussing and debating important

issues for NE&C constantly seeking resolutions


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Thank you – any questions?

[email protected]

NE Family Carers Network Presentation April 16

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Transcript of NE Family Carers Network Presentation April 16