Julie Barrow

MG From Caroline Dinenage MP’

D e p artm ent Minister of State for Care
of Health & 39 Victoria Street

. don
Social Care SWIHOEU

020 7210 4850

97 FEB 2020

HM CORONER
MANCHESTER SOUTH

Your Reference: 12641/MG
Our Reference: PFD-1192586

Ms Alison Patricia Mutch

HM Senior Coroner, Manchester South
HM Coroner's Court

1 Mount Tabor Street

Stockport

SK1 3AG

Ss February 2020

Thank you for your correspondence of 30 September 2019 to Matt Hancock about the
death of Julie Ann Barrow. | am replying as Minister with responsibility for learning
disabilities and | am grateful for the additional time in which to do so.

| would like to say how saddened | was to read of Julie Barrow's death and the tragic
circumstances surrounding it. This must be a distressing time for her family and | offer my
most sincere condolences to them. The loss of a child is deeply distressing and | can only
imagine how painful it must be when there are concerns about the care provided.

Your report highlights concern around healthcare professionals not having an adequate
understanding of Julie Barrow’s needs or recognising the importance of making
reasonable adjustments to support her during her stay in hospital. | would like to provide
reassurance that we are taking steps to address such concerns to improve the quality of
care delivered to people with learning disabilities.

In June 2018, NHS Improvement published Learning Disability Improvement Standards for
NHS trusts in England’. The Standards are intended to help NHS trusts measure the
quality of service they provide to people with learning disabilities, autism or both. The four
Standards concem respecting and protecting rights; inclusion and engagement; workforce;
and, specialist learning disability services.

In terms of respecting and protecting rights, NHS trusts must demonstrate that they have
made reasonable adjustments to care pathways, have mechanisms in place to identify and
flag patients who may require reasonable adjustments, and measures to promote anti-
discriminatory practice in relation to people with learning disabilities, autism or both.

The Standards also require staff to be trained and then routinely updated in how to deliver
care to people with learning disabilities, autism or both, in a way that takes account of their ~
rights, needs and health vulnerabilities. Guidance on implementing the Standards
suggests that this should include ensuring staff have been trained in learning disability and
autism awareness; health issues associated with learning disabilities and autism;
supporting people with challenging needs; safeguarding; human rights and mental
capacity and best interest’s assessments.

Compliance with the Learning Disability Improvement Standards is part of the NHS
Standard Contract for 2019/20, which is mandated by NHS England for use by
commissioners for all healthcare services other than primary care. While the Learning
Disability Improvement Standards currently only apply to NHS Trusts, the NHS Long-Term
Plan outlines that this would apply to all NHS-funded care by 2023/242.

Adherence to the Learning Disability Improvement Standards will help NHS organisations
meet the recommendations from the Learning Disabilities Mortality Review (LeDeR)
Programme. The LeDeR Programme was established in 2015 to support local areas to
review the deaths of people with learning disabilities, identify learning from those deaths,
and take forward the learning into service improvement initiatives.

| am advised that a Learning Disabilities Mortality Review of the care that Julie Barrow
received has been completed and that the review concluded that the care provided fell
short of good practice. Leamings have been identified and | am clear that Stockport NHS
Foundation Trust must take the required action to improve services for people with
learning disabilities.

The most common learning points and recommendations arising from local LeDeR reviews
relate to the need for inter-agency collaboration and communication, as well as greater
awareness of the needs of people with learning disabilities.

The Government's response to the second LeDeR report, published in September 2018°,
outlined a series of actions, as well as work already underway, to address these issues
and the health inequalities that people with learning disabilities experience. The key
theme throughout our response is that of facilitating better care of people with learning
disabilities by sharing information on their needs, and making reasonable adjustments to
improve access, and the responsiveness of services to meet those needs.

The Government's response to the second LeDeR report highlighted a number of
initiatives already in place or under development to strengthen information sharing. These
include the piloting, by NHS Digital, of a reasonable adjustment flag on patient records to
indicate the support needs and reasonable adjustments that an individual may require.
The flag supports improved communication between patients, their carers’ and clinicians,
leading to more personalised and safer care and better outcomes. In the trial, staff access
information through the patient's record on the Summary Care Record, which is designed

2 https:/Awww.longtermplan.nhs.uk/

* https://assets publishing. service.qov.uk/government/uploads/system/uploads/attachment_data/file/739560/govemment-

response-to-leder-programme-2nd-annual-report.pdf

to share key information about patients. In the longer term, the flag will be integrated

‘ within local clinical systems. The NHS Long-Term Plan commits to a digital flag in the
patient record by 2023/24, to ensure that staff know whether a patient has a learning
disability or autism.

Local LeDeR reviews have also demonstrated that health and social care staff do not
always have the skills and knowledge to provide effective, compassionate and safe care to
people with learning disabilities. For this reason, we have consulted on the introduction of
mandatory learning disability and autism training for health and care staff.

In the Governments response to the consultation’, published on 5 November 2019, we set
out a series of proposals that will ensure that health and social care staff will, over time,
receive training consistent with the Core Capability Frameworks for People with a Learning
Disability and Supporting Autistic People’,

These Frameworks set out the core skills and knowledge that staff supporting people with
a learning disability or autism should have, depending on the nature and intensity of care
or support they give. This will ensure that staff have the skills and knowledge that are
appropriate to their role. In this regard, we will work with professional bodies and the
Devolved Administrations to align pre-registration training as closely as possible with the
two Core Capability Frameworks and work towards a common curriculum for pre-
registration training in due course.

Health Education England is developing an e-learning disability awareness training
package for Tier 1 of the Core Capabilities Framework for Supporting People with a
Learning Disability. This was a commitment made by the Government in its response to
the second LeDeR report. This online tool is scheduled to be completed by the end of
March 2020 and will be available on the Mind-Ed Platform — a free educational resource.

For Tier 2 training we will develop and test a learning disability and autism training
package through 2020/21 in a number of geographical and service settings. We will
undertake an evaluation of the training package to inform the final design of training and
wider roll out.

To mandate the training, we will amend the Health and Social Care Act 2008 (Regulated
Activities) Regulations 2014§, to require NHS and social care providers carrying out
regulated activities to ensure that their staff have relevant levels of training in learning
disability and autism. Other levers will be used to mandate training for staff working in
non-regulated activities.

Finally, turing to your concern about cuts to Local Authority funding and the loss of the
disability liaison officer, | can advise that due to a range of Government actions, Stockport
Metropolitan Borough Council will receive an additional £21.1million for adult social care in

4 https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/844356/autism-and-
leaming-disability-training-for-staff-consultation-response.pdf

5 httos://www.skillsforhealth.org.uk/services/item/945-capabilities-frameworks

§ https:/Awww.legislation.qov.uk/ukdsi/2014/9780111117613/contents

2019/20, including £1.3million allocated from the £240million Winter Funding announced at
the 2018 Budget. :

With fuli take-up of the social care precept’ in 2019/20, based on their previous decisions,
Stockport Council could receive a total of £52.8million additional funding between 2017/18
and 2019/208. It is for local authorities to determine how this funding is used to support
adult social care services.

| hope this response is helpful. Thank you for bringing these concerns to my attention.

FROLINE DINENAGE

7 The Government has allowed local authorities that provide adult social care services to increase their council tax by up
to 2% for local adult social care.

® Nominal terms.