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!!

Thank youThank you

Any Questions?Any Questions?