Cancer Patient Partnership Group

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Staff need to get that

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we see things they don't see

and that we know, things they don't know.

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We want to be asked how much we want

to be involved in decisions about our care.

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I want to be treated as the person

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I am more than a bunch of malignant cells.

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Co-production involves

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people from very beginning

so that they can identify the right question

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that need to be asked, then

commenting on something that is already decided.

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Co-production also sharing power between

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those who use as the service

and who those who delivers the service.

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Therefore, skills and resources

used appropriately.

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Co-production is a way of patients and clinicians

working together to improve care

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by acknowledging and using the experience

of patients to help inform service provision.

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It's a way of validating the lived experience,

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using the skills and valuing the assets of people

who have experienced cancer firsthand.

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It's about making sure that the patients, carers,

their families have a say

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and feel acknowledged and empowered during

and after any cancer treatment.

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It gives them the opportunity to be more

equally involved in decisions that affect them.

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Nothing about us without us.

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I was part of a big MDT

where we were trying to improve the outcomes

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and reduce length of stay,

but also improve the patient experience.

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So we were part of a big project

and in order to do this

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right at the very beginning,

we held some patient focus group meetings.

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So with all this information that we had collated,

we actually incorporated

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a lot of it into some of our proposals

in the business plan.

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These included things like a rehabilitation clinic

where patients were able to come and speak

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to a dietician, a physio

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and a specialist nurse to help

prepare them better for their operation,

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Talk to them about what

to expect during the inpatient stay,

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as well as what to expect

in the early few weeks after they're discharged.

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The thing about being a carer

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is that you're not the patient, you're

just an afterthought if you're a thought at all.

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But a cancer diagnosis for someone you care

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for deeply affects you

and that should be taken into account.

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I want to be told the options and understand

what's going on.

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I don't want to just be told

what's going to be done to me

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without understanding why

and what other options are available.

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Co-production is also patients and clinicians

working openly together to improve cancer care.

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Improvements are made to identifying needs

and helping to find solutions to those needs

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through participation in projects

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and strategies, patients

contribute to positive change at many levels.

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Co-production is an equal partnership

between patients and clinicians from addressing

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an issue to project design to delivery.

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All voices are valued.

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The outputs Cancer

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Patient Partnership Group has allowed me

to be involved in a number of valuable projects

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using my experience to help inform and improve

cancer care in the hospital and wider community.

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It has been precious time well spent.

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Co-production is about involving patients

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in the design of services and facilities,

not just sometimes, but all of the time.

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What we've found is that co-production isn't easy,

but when it works, it brings real benefits

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to both patients and staff.

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For example, we involve patients in the design

of our new oncology outpatient facility,

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and the result of that is that design

much more closely meets the needs of both groups.

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So co-production gives us confidence

that our service offer is based

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on what our patients actually want

and is co-designed and delivered with.

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A really good example of that is it.

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Our patients asked us to write

our outpatient letters to them and copy the GP

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rather than the other way round?

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And the result of that

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is that the letters are much clearer

and much more useful for the patients

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as a summary of what

they've been through in clinic.

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And in fact the piece have also found them

much more useful as well.

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Here at SIU we have a very active cancer

patient partnership group

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member Cicero Cancer Board,

and they challenge and support

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members of the board to deliver

and improve our services for cancer patients.

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What we found is that co-production isn't easy

and in fact if it is easy, it

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probably isn't working very well.

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But when it works, it's brilliant

for all involved.

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We are just like you staff

the patients, patients and staff.

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We want you to take a genuine interest

in understanding,

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talk with us, listen to what we have to say

and tell us about yourselves to.