Date post: | 13-Jul-2015 |
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Education |
Upload: | health-education-library-for-people |
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Madhu AgarwalMadhu Agarwal
Macmillan Cancer Information ManagerMacmillan Cancer Information Manager
North East London Cancer NetworkNorth East London Cancer Network
The BackgroundThe Background Our Health, Our Care, Our Say”Our Health, Our Care, Our Say”
We propose that services We propose that services give all people with long-give all people with long-term health and social care needs and their carers term health and social care needs and their carers an “information prescription”an “information prescription”
By 2008, we would expect everyone with a long-term By 2008, we would expect everyone with a long-term condition and/or long-term need for support – and their condition and/or long-term need for support – and their carers – to routinely receive information about their carers – to routinely receive information about their condition . .condition . . . . Department of Health, 2006Department of Health, 2006
The need for Information The need for Information PrescriptionPrescription
People need information to make informed choice People need information to make informed choice about their health careabout their health care
Research showed 39% of patients do not receive Research showed 39% of patients do not receive information about their diagnosisinformation about their diagnosis
People also need help to navigate to information they People also need help to navigate to information they wantwant
Information Prescription will help them access the right Information Prescription will help them access the right information at the right time they need it DH 2004information at the right time they need it DH 2004
MAPPING THE PATIENT MAPPING THE PATIENT INFORMATION JOURNEYINFORMATION JOURNEY
What information do What information do patients require at patients require at each stageeach stage
Examples of good & Examples of good & poor informationpoor information
Ideas for change & Ideas for change & improvementimprovement and and empowermentempowerment
ThePatientJourney
There wasn’t enough
informationThere was too
much information
It wasn’t consistent
Can’t understand
it
Information that describes each stage should be available and offered at each stage , not given.
WHAT SHOULD INFORMATION LOOK LIKE AND WHEN DO PATIENTS NEED
IT?
• what to expect from your visit/appointment i.e. expected waiting time
• what it will be like, i.e. test, investigation, examination and medication
• what can/cannot be done before or after the appointment to include diet, meals, alcohol etc
To ensure that patients have easy To ensure that patients have easy access to:access to:
• the right high quality information
• in the right place
• at the right time
WHY DO WE NEED TO REVIEW PATIENT INFORMATION?
• Kept simple
• No use of medical jargon
• Contact details for further information, support and advice
• Dated
• Comply with information standards (explain risks/benefits)
INFORMATION SHOULD BE:-
THROUGH A VARIETY OF MEDIA:-
- in person, in writing, by telephone, by email, by SMS, on audio cassette and on DVD
01/29/15
HOW ARE WE Achieving this in HOW ARE WE Achieving this in UK?UK?
• Form a group of key staff and invite a patient to join the group
• Review all information, (national and local), to ensure it complies with local guidelines and standards for writing patient information.
• Use discern tool (http://www.discern.org.uk/general_instructions.php)
• Produce new information where there are gaps, but don’t re-invent the wheel)
• Disseminate information to all interested parties for comment ensuring you give a date for feedback (don’t forget to include consultants)
• Don’t spend too much time amending and circulating. On average, ammended information should not be circulated more than three times.
HOW DO WE KNOW THAT WE HAVE GOT IT RIGHT?
• Evaluate the information with just a few patients:-
• When did they receive it?
• Where did they receive it?
• Did it accurately describe their experience?
• Was there anything they didn’t understand?
• Was the information too much/too little?
• Was there anything else that should be included?
REFERRAL
• Rapid Access Clinic
• Respiratory Nurse Specialist card
INVESTIGATIONS
• CT Guided Biopsy
• CT
• MRI
• Having a Bronchoscopy
• Surgical Diagnostic Procedure
DIAGNOSIS
• Lung Cancer Advice & Information
• Information for People with Mesothelioma and their carers
• Your Local Services (orange book)
• Radiotherapy - A guide for patients and their families
TREATMENT
• Information for Patients who have radiotherapy for lung cancer (Radical) (Draft)
• Information for Patients undergoing radiotherapy to the Chest (Palliative) (Draft)
• Chemotherapy Smart Card & Bacup Information (not in file)
• Chemotherapy Booklet
• D.O.R.M.A.T.S. - Your lung surgery
• Understanding Clinical Trials
PALLIATIVE CARE/SYMPTOM CONTROL
• Palliative Care leaflet (Draft)
• Superior Vena Cava Obstruction Information
• Cough leaflet
• Fatigue leaflet
• Breathlessness leaflet
• Pleural Effusion
• How to look after your mouth
• Leicestershire Nutrition & Dietetic Service
- Taste Changes
- Nausea and Vomiting
- Loss of appetite
- Constipation
• Loros (leaflet)
• Macmillan Nurse card
AFTER YOUR TREATMENT/FOLLOW-UP CARE
Top Ten TipsTop Ten Tips::
� Keep it patient centredKeep it patient centred� Don’t assume that you Don’t assume that you
know what patients & know what patients & relatives requirerelatives require
� Ask & be prepared to actAsk & be prepared to act� Recognise individuality of Recognise individuality of
needneed� Don’t reinvent the wheelDon’t reinvent the wheel
Top Ten TipsTop Ten Tips::� Avoid medical jargonAvoid medical jargon� Be realisticBe realistic� Don’t underestimate the Don’t underestimate the
task & time commitmenttask & time commitment� Understand that the Understand that the
process is what is process is what is importantimportant
� Think outside the boxThink outside the box
Last but most ImportantLast but most Important
Remember patients are people!!Remember patients are people!!