1. Information Prescriptions: the answer we were looking for? Northumbria Healthcare NHS Foundation Trust & Parkinson’s Disease Society Pilot Kate Greenwell – Information Prescriptions Project Manager

2. Overview 1.Background to Information Prescriptions 2.Northumbria Healthcare NHS Foundation Trust Pilot 3.Key findings from patients, carers and health professionals 4.Our next steps 5.National support from Department of Health

3. 1.To understand what is wrong 2.To gain a realistic idea of prognosis 3.To make the most of consultations 4.To understand the processes and likely outcomes of possible tests and treatments 5.To assist in self-care 6.To learn about available services and sources of help 7.To provide reassurance and help to cope 8.To help others understand 9.To legitimise help-seeking and concerns 10.To identify further information and self-help groups 11.To identify the ‘best’ healthcare providers. Source: Coulter, Entwistle & Gilbert (1998) Why is patient information important?

4. Only 1 in 4 of discharged patients were able to list all of his or her discharge medications, and only 1 in 7 was able to describe the common side effects of all of his or her medications. 6 out of 10 discharged patients were unable to name their diagnoses (Mayo Foundation for Medical Education and Research, 2005) GPs do not systematically or proactively give patients information on accessing local services. The findings also showed a lack of co-ordination between health and social care across organisational boundaries (Coulter, A, 2007, Accessing Information About Health and Social Care Services, Picker Institute Europe) The problem 86% of people said that being given more information about their health and condition would give them more control over their health and wellbeing (Department of Health, 2006, Your Health, Your Care, Your Say)

5. Building on the best: choice, responsiveness and equity (2003) Better information, Better Choice, Better Care (2004) Our Health, Our Care, Our Say: a new direction for community services (2006) Your Health, Your Care, Your Say (2006) Our NHS, Our Future: NHS Next Stage Review (2007) The NHS Constitution (2008) Patient information is a central theme to recent DH policies:

6. the right information at the right time Information Prescriptions the right information at the right time The DH vision is that everyone with a long-term condition or social care need will be guided to reliable and relevant sources of information to allow them to feel more in control, better able to manage their condition and engage with the healthcare system and to stay independent. Information prescriptions will become a routine part of care – just like prescriptions for medicines.

7. Informed and empowered people...tailored to help people with long term conditions and carers receive information they need to manage the condition. …signposts to sources of information about health and care – eg Tel nos, website addresses. …will be given to people by their health and social care professionals Information prescriptions

8. Cancer (general): Durham Head, neck, lung and gynaecological cancer: Nottingham Young people’s mental health: South Staffordshire People over 65 mental health: Cambridgeshire Dementia: Isle of Wight Alzheimer’s dementia: Suffolk Neural and physical conditions: North Tyneside Sight loss: Leeds Dementia: Leeds Diabetes: Darlington Adult mental health outreach: South Essex Whole systems approach: Manchester Depression, anxiety: Doncaster Deaf and hard of hearing: Oxford Cystic Fibrosis: Birmingham Non-surgical cancer treatment: Birmingham Psychosis/Schizophrenia, Bi- polar/Manic depression: London Paediatric pharmacy: London Complex cancer care: London Diabetes, Asthma, Arthritis: London IP pilot sites

9. The process for information prescriptions Information Content Identify sources of information people people need to access Access Made available through range of channels Prescribing A template in an appropriate format Personalised Process Specific to the condition, place and point on care pathway Directories Establish links to the content

10. Parkinson’s disease is a complex and individualised condition Northumbria’s coverage Wide range of health professionals supporting patients and carers Limited access to IT for both users and health professionals Limited time during consultations Information prescriptions: the answer we were looking for?

11. Needs assessmen t & scoping Stakeholder event Health and social care professional questionnaire Service user questionnaire Local PDS branch forum Visits to other pilot sites

12. Key comments from people with Parkinson’s & carers: Information should be provided at each stage of their condition Not just written information – support needed to identify and use information Information should be personalised and timely Information on a wide range of topics (e.g. benefits, coping with Parkinson’s) – not just medical information Information should be recorded to allow follow-up by health professionals

13. For examples of Information Prescription templates – www.informationprescription.info/resource Doctor OR Specialist Nurse OR Allied Health Professional OR GP OR Social care professional IP issued by..

14. IP issued …assesses info needs… Clinical team member OR PDS Information & Support Worker OR NHS Direct Face-to-face OR By telephone

15. Information needs assessed …delivered… IP issued Verbally OR By hand OR By post OR By email Verbal information OR Written information OR Audio information OR DVD/podcast OR Information in different languages

16. Information needs assessed Information delivered IP recorded… IP issued In medical notes AND In patient outpatient letter AND Patient letter copied to GP

17. IP issued Information needs assessed Information delivered IP recorded IP followed up by clinical team

18. Service Users Key findings: Service users Personalised Secure Supportive Supports verbal information Understanding Reassurance Coping Informed choices Self-care Access

19. Health Professionals Key findings: Health professionals Benefits Emphasise importance of information giving Wider range of information topics Better identification of problems Better use of professionals’ time Barriers Initial resistance Benefits? Initial concerns over workload Concerns over role & professional-patient relationship Training needs? National evaluation findings - http://www.informationprescription.info/finalreport.html

20. Our next steps: Sharing lessons learnt Information strategy group Information centre IT solutions Bibliotherapy (i.e. self help books on prescription)

21. Recommendations for local implementation: Engaging clinical teams User involvement Partnership working Use resources available

22. National Support available for local implementation National support for local implementation Information quality assurance: information accreditation scheme Information systems: NHS Choices (www.nhs.uk) Workforce: NHS Employers Taking forward local Implementation Online resource pack www.informationprescription.info /resource Online resource pack www.informationprescription.info /resource

23. Information Prescriptions: the answer we were looking for? Northumbria Healthcare NHS Foundation Trust & Parkinson’s Disease Society Pilot Kate Greenwell – Information Prescriptions Project Manager