1. Do you want to be involved?
Introduce this session – asked by the Alliance to attend this event to help look at how to better engage and involve patients in their work.
Carol Nevison
Engagement and Volunteering Manager
May 2017

2. What I will cover … What is ‘patient involvement’?
Principles for involvement
Different ways you can get involved
Examples from around the North
So we will start by looking at what patient involvement actually means and some principles that can be used to make sure everyone taking part has a positive experience. I will then describe some of the different ways you can get involved and describe some of the projects that are happening in this area. We will then finish with table discussions where you can tell us how you would like to be involved and what the Alliance need to do to follow this up. Please note that today is just a starting point for getting involved and more work is needed to start to take this forward.

3. Using your experience
Patient Involvement – How patients, their families and carers are involved in the design, the planning and the delivery of health services in partnership with health professionals – so in the case we are talking about how patients, families and carers can work in partnership with the people who are part of the Cancer Alliance to improve care and treatment.
Patient Involvement is an opportunity to use your experience – you are the expert in your care and treatment

4. Why is this important? More services that meet the needs of patients
Patients and carers as equal partners in the design and delivery of their care
One size fits no-one
This puts the patient at the heart of the redesign of cancer services.
If patients are involved in the design, the planning and the delivery of health services – we should get services that meet the needs of patients better and this is a good thing for everyone.
By getting involved, patients are seen as equal partners – their expertise is recognised and their views and opinions are used in shaping services
We all know that a one size fits all approach will not work – so patient involvement can put patients at the heart of redesigning cancer services.

5. Principles for patient involvement
OPPORTUNITIES
INCLUSIVE
TIMELINESS
In order for patient involvement to be effective – it is really important to develop some principles that everyone agrees to use. Over the next few slides I have some examples, but this will be something that the Alliance will want to look at with the groups that want to be involved. So this is like a starter for ten …
Plain english/jargon free; be clear about what the opportunities for involvement are; inclusive; respect; timeliness

6. Principles for patient involvement
RECOGNITION
COMMUNICATION
POSITIVE OUTCOME
Training/ skills development; communication/listening/discussion; feedback; rewards; positive outcome
The principles should be developed and agreed jointly when you start any involvement activity.

7. Full screen image slide Second line if required
So in short, this is about people coming together to build something for the future

8. Ways to be involved
Informing: receive leaflets, newsletters, posters, be on lists Consulting: complete surveys and questionnaires either written or face to face interviews Involving: work directly with health care professionals on projects and groups to provide views on improving services Collaborating: joint decision making, sitting on advisory boards
Can be involved in any of these activities at different times, not static – you choose where it feels right for you.

9. Full screen image slide Second line if required
We need to recognize that everyone is different and every cancer journey will be different – and if you get involved you can use your experience to help shape the way in which services are delivered in the future.

10. Involvement in the North – Examples Cancer Partnership Group – Mid Yorkshire Hospitals
The group consists of people living with cancer and their carers with a focus on supporting the work of the clinicians, nurses and managers in improving cancer services.
Group members are involved in areas such as patient experience, patient care, patient information, peer review and facilities. Achievements include:
Contributed to the production of a cancer directory of local and national information at the request of patients
Worked collaboratively with clinical nurse specialists to establish patient support groups
Award winning implementation of patient discussion records
One example to share ….

11. Some others include …
Patients and carers sharing their stories, taking part in interviews to help shape and improve services
Patients and carers helping to map the cancer pathway – using an illustrator to bring their views and experiences to life
Taking part in a patient panel to recruit new members of staff as well as helping to draw up the competencies required for the role
Getting involved in developing information and resources

12. So now it is over to you …
On your tables – please can you discuss in groups:
Can you give examples of when you felt listened to?
Have you been involved/engaged in any activities similar to those described this afternoon? If so when/how and how effective was this?
If you haven’t been involved previously, would you like to get involved with the Alliance in the future?
If so – How? When? What is the best way for you?
What do the Alliance need to do to engage with you?
What action would you like to see?
How would you like to receive feedback from this event?
Answers on post-it notes and attached to flip chart paper.

13. The end!