Mid Trent Cancer Network Information Prescriptions the story so far

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Mid Trent Cancer NetworkInformation
Prescriptions the story so far

• Elaine Wilson Nurse Director/Project Lead
• Sheila Williamson Project Manager

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Origins of the pilot

• Our health, our care, our say (DH, 2006) outlined
  a vision that by December 2008
• Everyone with a long term condition or social
  care need and their carers would be given an
  information prescription
• Information prescriptions will become a routine
  part of care, just like prescriptions for
  medicine

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Information Prescriptions Pilot

• Department of Health IP pilots
• 20 pilot sites nationally covering
• Cancer
• Mental Health
• Long term conditions (asthma, diabetes, COPD)
• Arthritis,
• Parkinsons Disease
• Cystic Fibrosis
• Sight loss
• Deaf and hard of hearing
• Development started in March - first
  prescriptions issued in July

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Where we started from

• With a blank sheet of
• paper and a lot of questions!
• What is an information prescription?
• How is it different to what we do already?
• Why is it called a prescription?
• Is this just another DH must do?
• How can this make a difference?
• How will we ever get clinicians on board with
  this?

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What is an information prescription (IP)?

• Cancerbackup definition
• A source of personalised information that lays
  out clearly
• and simply the salient points about an
  individuals
• consultation with a healthcare professional about
  their
• diagnosis, treatment and/or care plan and points
  the way
• to other relevant sources of high quality
  information and
• support. It is designed to improve the dialogue
  between
• patients and health professionals and enhance the
  valuable
• face-to-face time within consultations.

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What next?

• A steering group!
• Chaired by a carer representative
• Patient representatives on the group alongside
  health care professionals and voluntary sector

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How we choose the clinical areas?

• Previous work carried out in developing
  information pathways for 3 clinical conditions
• Head and neck cancers
• Lung cancers
• Gynaecological cancers

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Information Pathways

• Each of these conditions
• has a supporting
• Information Pathway

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The approach?

• Engagement - a key feature
• Steering group chaired
• by a carer and with patient
• members
• Stakeholder event
• 10 guiding messages
• Gaining ownership
• Involvement of clinical teams

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Information Prescriptions MUST be.

• Meaningful to patients and carers and provide
  something which will work for them (Innovation
  and creativity)
• User involvement - we need to know from patients
  and carers what will work for them involving
  users will be a core theme throughout the project
• Sustainability we want to develop something
  which can be embedded into future care delivery
• True clinical engagement - Information
  Prescriptions need to assist the healthcare
  professional in the delivery of high quality,
  timely, accurate information

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10 guiding messages

• Both patients and carers needs must be considered
• Written information should not replace verbal or
  face-to-face contact
• Information needs to be specific and personalised
• Information needs to be good quality and reliable
• IPs should be a tool to help facilitate and
  navigate the journey

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10 guiding messages

• IPs should have content as well as sign post
• IPs should compliment rather than duplicate what
  is already in place
• IPs need to cover the whole pathways of care
  including pre-diagnosis
• Information must remain a choice
• Keep it simple!

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The approach?

• Involvement of voluntary sector
• Information centres
• Cancerbackup
• Macmillan Cancer Support
• Marie Curie Cancer Care
• Continuous improvement approach
• Lets have a go!
• We wont get it right first time!
• Small step changes

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Evolution, not revolution!

• What we end up with may be different from what we
  start with
• Action Learning what works well, why has it
  worked well, what didnt work and why
• Be open and honest it is OK if things did not
  work, but need to understand why
• We need to be practical, and make it a reality,
  based on our learning
• Share our learning with, and learn from the other
  Pilot Sites

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The Process for Delivering IPs?
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What progress hasbeen made?

• There is clear ownership of project within health
  communities and the clinical teams
• The template and operational policy have been
  developed and agreed across
• 3 health communities
• 3 clinical pathways
• 3 Acute Hospital Trusts covering 7 hospital sites

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What progress has been made?

• 85 IPs issued to date
• IPs being issued at all points on the pathways
• IP template close to final format
• 15 out of 18 CNSs now issuing IPs
• Some medical consultants now involved in issuing
  IPs
• Interest from other cancer pathways
• Interest from SHA LTC group

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Evaluation

• Local evaluation
• Focus groups with CNSs
• Discovery interviews with patients and carers
• National evaluation
• GfKNoP questionnaires to patients/carers and
  people issuing IPs
• Economic analysis York University

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Benefits of IPs for patients and carers

• Anecdotal data
• CNSs are seeing people bringing
• the IP back for follow up consultations
• It provides a plan
• Avoiding duplication or repetition of information
• Brings all the pieces of information together

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Benefits of IPs for patients and carers

• Anecdotal
• People like
• having the diagnosis written down in relevant
  language
• having a diagram
• having a point of contact written down

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Benefits of IPs for health care professionals

• Focus group feedback
• IPs are providing
• a record of the patients consultation
• record of what information has been offered and
  given to patients avoiding duplication
• a focus on patient information needs and how
  these are met
• The IP pilot and process is improving the quality
  of information provided

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Benefits of IPs for health care professionals

• Focus group feedback from CNSs
• Facilitating team working
• Facilitating CNS access to pre - diagnosis part
  of the patient pathway
• Consultants are becoming more involved in
  information giving
• There is transferability of the template and
  process to patients with non-cancer diagnosis

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Lessons learned

• Not feeling you have to have the answers
• Give people time to work out what an IP might be
  and how it might work
• Making sure that IPs add value and do not
  duplicate
• Find ways to nurture what is already happening
  locally
• It must work for both patients and professionals

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Emerging challenges

• Maintaining the current level of engagement and
  enthusiasm
• Putting in place an IT solution that will link to
  a number of IT systems
• Engaging with medical staff across all 3 pathways
• Involvement with primary care and issuing
• IPs to carers
• Integration of IPs with other drivers such as My
  Little Blue Book

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What next?
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What do you think?