Joining up care for the patient and family

1. Joining up care for the patient and family Marlene Winfield marlene.winfield@nhs.net

3. 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

4. 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

5. 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

6. 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’

7. 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

8. 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.

9. 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

10. 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

11. 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

12. 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. • .

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

14. We need to design them into reforms Thank you