Patient Involvement a view from the voluntary sector

1
Patient Involvement a view from the voluntary
sector

• Jennifer Dickson
• Patient Network Manager
• The Roy Castle Lung Cancer Foundation

2
What is Patient Involvement?

• Impact / help in shaping service delivery
• Membership on NHS policy/strategy setting
  committees eg Scottish Cancer Group, SIGN,
  SCAN, WOSMCN, Clinical Standards Board
• Feed patient opinion into the NHS process
• Focus Groups eg RCF National Patient Group
  Meeting 2003
• Surveys

3

• Question
• How long did it take from your first symptom
  until you/your loved one was actually diagnosed
  with lung cancer?

4
(No Transcript)
5
Q - What was the reason for the delay in
receiving your treatment?
Patient Professional
6

• Question
• On being diagnosed with lung cancer, would you
  prefer information on all aspects of the
  disease/treatment immediately or only information
  as appropriate for you at that time?

7
(No Transcript)
8
The Current Situation

• NHS Scotland has, in principle, embraced
  public/patient input.
• Many good examples of patient involvement leading
  to improvements in patient care
• No effective Scotland wide strategy for patient
  involvement in cancer services, involving both
  the NHS the Voluntary Sector.
• Sadly still some tokenistic patient
  involvement.

9
Effective Patient Involvement

• The voluntary sector is very supportive of
  effective Patient Involvement
• Question Why involve patient representatives?
• Answer To ensure that service is improved to
  meet the needs of service users.

10
Achieving Effective Patient Representation

• Ensure the patient representative has a defined
  role within the committee.
• Ensure the entire committee know the defined role
  of the patient representative
• Ensure the patient representative has a mentor
  within the committee.

11
Achieving Effective Patient Representation

• Patient selection is the person representing
  lung cancer as a whole, or do they only have
  their experience?
• Training do they have the knowledge and skills
  to contribute RCLCF/CancerVOICES training.
• Support who do they go to for help and advice?
• Monitoring does anyone monitor and evaluate the
  effectiveness of the patient involvement?

12
Opportunity

• The development of Cancer Networks in Scotland
  offers the opportunity for strategic, effective
  cancer patient involvement throughout Scotland.
• THIS MUST BE GRASPED WITH BOTH HANDS

13
Final Thoughts

• Lung Cancer Patients/Carers can help to improve
  lung cancer services
• Do you have a patient focused service?
• How are the views of your lung cancer patients
  obtained in your MCN?
• Is patient involvement in your MCN effective?
• Are you working collaboratively with other MCNs
  and the voluntary sector?