# Patient Involvement Event - Oxfordshire CCG



## Diabetes UK (Feb 16, 2018)

Diabetes UK is working with Oxfordshire CCG, to help transform the care that people living with diabetes receive across the county. We know that people have different experiences of care and that there is room to improve the outcomes for people living with diabetes in Oxfordshire.

But as the experts in your own care, we need your help! We want to hear about your experiences of local diabetes care and what you would like to be improved.

We are holding an event to listen to people living with diabetes across Oxfordshire about your experiences of living with diabetes and the care you receive.

At the event you will be able to:

Hear from Oxfordshire CCG about their vision for the future of diabetes care.

Use your experiences to help shape the plans for diabetes services in Oxfordshire.

Meet other people living with diabetes and share your ideas on how Diabetes UK can better support people living with diabetes across Oxfordshire.

The event is open to any adult living with diabetes, or people who care for others with diabetes. As there are limited places, you must sign up to attend the event.


*Date: Thursday 1st March, 9.00am – 12.15pm
 Venue: The Kings Centre,Osney Mead, Oxford, OX2 0ES*

 Sign up at oxfordshirediabetes.eventbrite.co.uk, email south.east@diabetes.org.uk, or call 01372 720148.

Thanks


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## Robin (Feb 16, 2018)

This is my area, but I can't get to the meeting, will there be any feedback available to read anywhere?


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## TheClockworkDodo (Feb 17, 2018)

I'd be interested in feedback too, I'm not in Oxfordshire but my diabetes care is currently split between Gloucestershire and Wiltshire and I wouldn't be at all surprised if they sent me to Oxfordshire at some point (council area is Cotswolds and we seem to get sent to different counties for different things).


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## Diabetes UK (Feb 23, 2018)

Hi - I have spoken with the organisers, who will be producing a short overview of discussion.
They've offered to share this with us on the forum, after the event


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## Robin (Feb 23, 2018)

Hannah DUK said:


> Hi - I have spoken with the organisers, who will be producing a short overview of discussion.
> They've offered to share this with us on the forum, after the event


Ooh, Thank you, that would be great!


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## TheClockworkDodo (Feb 23, 2018)

Thanks, @Hannah DUK


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## Sally W (Mar 6, 2018)

TheClockworkDodo said:


> I'd be interested in feedback too, I'm not in Oxfordshire but my diabetes care is currently split between Gloucestershire and Wiltshire and I wouldn't be at all surprised if they sent me to Oxfordshire at some point (council area is Cotswolds and we seem to get sent to different counties for different things).


Juliet - do you mind my asking if you know others in Cotswold area on here? I’m trying to organise a south west meet up -possibly Cheltenham area but so far there’s only 2 of us.Would you be interested?


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## TheClockworkDodo (Mar 6, 2018)

Sorry, the nearest person to me I know of is @Robin and she's in the other direction.

I would love to be able to meet people, but because I have severe chemical and noise sensitivities as part of another illness it's very difficult.  Most venues aren't accessible for me and most people are far too scented for me to be able to go near them.  Also, my illness is unpredictable so I can never commit definitely to anything - there's always a chance I won't be well enough on the day.

But if you can direct me to a thread with details of where and when you're planning to meet, and/or if you want to pm me about it, please do!


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## Robin (Mar 6, 2018)

TheClockworkDodo said:


> Sorry, the nearest person to me I know of is @Robin and she's in the other direction.
> 
> I would love to be able to meet people, but because I have severe chemical and noise sensitivities as part of another illness it's very difficult.  Most venues aren't accessible for me and most people are far too scented for me to be able to go near them.  Also, my illness is unpredictable so I can never commit definitely to anything - there's always a chance I won't be well enough on the day.
> 
> But if you can direct me to a thread with details of where and when you're planning to meet, and/or if you want to pm me about it, please do!


The thread's here, Juliet.
https://forum.diabetes.org.uk/board...west-glos-oxford-wilts-etc.71943/#post-800673


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## TheClockworkDodo (Mar 7, 2018)

Thanks, Robin.


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## Diabetes UK (Mar 12, 2018)

Hello all, apologies for the delay with this and also for the length of the below message!
Please see the notes from the event, provided by Oxfordshire CCG:

*Priorities for improvements*
There were very good table discussions about the current issues with the diabetes service and improvements people would like to see. The discussions highlighted a number of common themes across attendees and some more specific issues. The feedback has been grouped into seven overarching themes, which our outlined below.


*Peer support*
The need for greater access to peer support was a clear message that was raised throughout the event. It was identified that there is currently a Diabetes UK group in Banbury, however this isn’t suitable for those living elsewhere in the county. A group has also been established on the back of a patient participation group (PPG) in one of the GP practices. The Oxfordshire Sport and Physical Activity team have also established a support group in the South and Vale region of the county.

People identified that Oxfordshire is a large county, and travel into Oxford can prove difficult at peak times. It was highlighted that peer support is an important part of a holistic diabetes service, so it is important that there is equitable access and not just available to people living in certain parts of the county.

People also highlighted that there are different types of peer support. Some people would like the support of a group, whereas others might prefer more of a peer mentoring approach.


*Positive relationship with their healthcare professional*
The relationship between the person with diabetes and their healthcare professional was raised throughout the event. A number of people highlighted the excellent care they have received from a number of healthcare professionals and the hope that everyone can receive this level of care.

People talked about wanting to have a named healthcare professional, with whom they could build up a positive relationship with. People wanted a healthcare professional who knew them, not just what it said on their records, so consistency of care was important.

People also linked consistent care to addressing the emotional and psychological impact of diabetes. If people felt confident and had trust in their healthcare professional, they were more likely to be more open about challenges they faced.

People also talked about making access to care easier, for example through the use of skype consultations, so that they didn’t have to travel for every appointment where it wasn’t always necessary.


*Access to healthcare professionals who understand diabetes*
People want to ensure that when they need healthcare, the healthcare professional caring for them has at least a basic understanding of diabetes. This was raised in particular reference to primary care and inpatient settings.

People said that they would like every GP practice to have an identified lead for diabetes.

It was also raised that people with diabetes do not always know what good or excellent care looks like. A couple of people said that they had recently moved GP practices, and are now receiving much better care, but they hadn’t realised what they were missing out on previously. It was important to these people that this variation between GP practices was addressed.

People also wanted to access other healthcare professionals whose expertise might be useful. There was reference to Clinical Pharmacists who were able to provide valuable information about medication. People also mentioned the need for greater support from dieticians to make lifestyle changes.


*Support for emotional and psychological health*
People highlighted that they would like greater support for the emotional impact of living with diabetes. People talked about more integrated support, which included better support from the GP/Practice Nurse, as well as more specialist support.

People talked about the need for greater emotional support at point of diagnoses, and said that counselling support at this point would be beneficial.

People also talked about the need for greater support for those people with a co-morbidity of diabetes and a diagnosed mental health condition. They would like to see greater links with other organisations, such as MIND.


*Better access to information and education*
People who had attended the Diabetes 2gether course were very positive about it and that it provided valuable information. However people did highlight the lack of follow up after attending.

People highlighted a need for greater education and information in and from GP practices.

People also wanted greater support to make lifestyle changes that would improve their health.


*Access to diabetes technology*
It was highlighted by a number of people about access to technology that would help support people to manage their diabetes. A number of references were made to Freestyle Libre, with people commenting how much of a difference it had made to their lives. People would like a broader policy which covered everyone who could benefit from it.


*Reduce variation*
This point is linked to everything else covered in the feedback. People wanted to ensure that no matter where you lived or what GP practice you attended, you received good quality care.

*
 Increased public awareness*
Although this doesn’t lie within a diabetes service, people commented on the need to increase awareness of diabetes amongst the general public. There was a particular reference to Type 1 diabetes and local employers. This does have implications with regards to the emotional impact of diabetes and ensuring there is support with this. There is also a question of how the diabetes service could support people with diabetes through work. Are there opportunities to offer appointments outside of working hours, or through Skype or other technological solutions?


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## Robin (Mar 12, 2018)

Thank you for reporting that back, Hannah, some useful insights there. Although most of them, I must say, are what you'd hope would be happening already! At least it's good that they are prepared to listen, and acknowledge that everything isn't necessarily as it should be.


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## TheClockworkDodo (Mar 12, 2018)

Thanks very much for posting that, @Hannah DUK - a lot of issues mentioned are ones which are raised on this forum a lot too, so it's good that they are being raised with at least one CCG.  The CCG's notes are very much "this is what people said they wanted" though, rather than "this is what we're going to do about it" - it would be nice to have some feedback from them on the latter as well!


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## trophywench (Mar 12, 2018)

Yes Hannah!  - at various joint NHS/DUK 'things' I have attended or others have (thinking of @everydayupsanddowns particularly here) - the groups of medics have had to state which of the subjects they are going to commit to, where they work.

Was there any commitment to anything here?


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## Diabetes UK (Mar 13, 2018)

Hello all, thanks for your questions! Yes, so what is happening now, with the information that was collected?
The CCG, Oxford University Hospital, and Oxford Health will be using the feedback to design a new integrated service for all of Oxfordshire. The feedback is also being used to develop ‘patient defined outcomes’ which will be used to monitor the performance of the new service, to ensure that it is meeting the expectations of people with Oxfordshire. Diabetes UK and patient representatives are part of the working group to help design the new service. Hope that answers a little towards what they will be doing with the research?


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## TheClockworkDodo (Mar 13, 2018)

Thanks, Hannah.  I hope it not only makes a difference to people with diabetes in Oxfordshire, but also that they will pass on the feedback to other CCGs across the country so that we get more standardised treatment country-wide as well as county-wide.


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## mikeyB (Apr 5, 2018)

I’m not sure that will happen Juliet. That’s the problem with the way NHS England is now structured. It makes it more difficult for best practice to disseminate. Any other CCG, the first question they will ask is how much does this cost? They will never ask how much this could save in the future.


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## TheClockworkDodo (Apr 5, 2018)

I know, Mike, but I can hope ...


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