Joining up care for the
patient and family
Marlene Winfield
marlene.winfield@nhs.net
People can fall through
the cracks between:
• The patient’s wishes and care
services’ priorities
• GPs and hospitals
• Different hospitals
• Different parts of one hospital
• Health and social care
• Unplanned and planned care
• Community services and
inpatient services
• Carers and care services
• Handover blackspots
Joining up the various medical teams
involved in care [would help]. My own
experience is that most people do a
really good job but messages don’t get
passed from doctors, hospitals, hospices
and so on properly.
Respondent to survey by The Prostate Cancer
Charity 2010
Patients and information
are crucial
• Paper can only be in one place at a time and so
fragments care – technology can help join care up
• Patients can be the glue, but they are starved of
information
• Carer’s/family’s rights to information are unclear
• Different systems/different rules affect ability to share
patient information across boundaries
• Service users know where the cracks are but are not
routinely involved in shaping reforms/policies/practices
Proposals in the Information Revolution
could begin to improve things
• Improve information flows:
• within the NHS
• with social care
• with third sector and private sector care
providers
• AND WITH THE PATIENT AND CARER
• Give people access to their records, starting
with the GP record, encouraged them to take
more control-‘Nothing about me without me’
• Bigger role for the third sector as a source of
information and support
• ‘Set data free’ and encourage others to provide
tailored information to service users and the public
• Gather and use patient feedback and outcome
measures to improve services
• Common standards for linking different systems,
for information governance and data quality
• Encourage innovation, including technology in
the home and community
Established in 2002, the Salford Cancer
Information and Support Centre is a hospitalbased service linked to a network of statutory,
voluntary and community organisations. It
supports the local community to provide
financial, emotional and practical support.
It delivers support face-to-face from a unit
within Salford Royal NHS Foundation Trust and
in the community through a range of initiatives
over the telephone and online.
Associated challenges
• Resources, and funding that encourages
collaboration
• Cultural/trust issues
between:
• primary and secondary care
• doctors and nurses
• health and social care
• clinicians and patients
• patients and carers
• public, private and third sectors
The British Heart Foundation funds
specialist cardiac health professionals
to work closely with general
practitioners, primary care staff,
cardiologists and pharmacists, acting
as an essential point of contact for
patients, helping them to navigate
their way through the system.
BHF Specialist Nurses – Changing the
face of cardiac care, BHF, 2010
• Skills gaps – clinicians and public
• Unclear laws about information sharing
• Using technology to join up care, eg shared
interactive care plans, health apps
• Bridging
the digital divide
• Ensuring everyone benefits through tailored
information and support to use it effectively
• Communication, eg. for informed consent
The ThalidomideTrust is using Patients
Know Best to give individual thalidomiders
.
‘ownership’
of their health records.
The thalidomiders help create their own
electronic health record. They can
develop it as they wish. They can make it
available to anyone they choose.
Patients and information
are the two most underused resources in the
NHS
Dr. Richard Fitton
Cartoon with thanks to the British Medical Journal
We need to
design them
into reforms
Thank you