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 hospital- based 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.
Cartoon with thanks to the British Medical Journal Patients and information are the two most under- used resources in the NHS Dr. Richard Fitton