NHS Wales diabetes
This is part of the NHS Wales roll-out. You can also read other PKB case studies.
NHS Wales begins national roll-out of PKB to people living with diabetes
Starting in June 2017, people with diabetes in Wales aged between 16 to 24 will be able to register for a Patients Know Best (PKB) record.
The world’s only fully patient-controlled online medical records system, PKB will be working across seven health boards and within every clinical team providing young adult care services in Wales.
The primary focus of the project is to provide better, more consistent services to patients going through big changes in their lives – improving clinical outcomes as a result.
Dr Julia Platts, national clinical lead for diabetes in Wales said:
“We know that young people may can become disengaged with their diabetes care teams when they’re approaching adulthood. This is because these years are often a time of great change – as they are for any young person. It’s a very particular time where we need to provide very particular services. We believe that a patient-controlled records approach will empower young people to monitor and manage their health in a more sophisticated way – and to ensure that their long term health outcomes are improved.”
The roll-out of patient-controlled records by NHS Wales also seeks to facilitate better relationships between young people with diabetes patients, their carers and the health and social care providers serving them across Wales.
Dr Platts continues:
“Good early control of diabetes is essential for reducing complications later in life. So, this project is also about ensuring that we provide excellent support through insulin management, education and psychological services so we receive the best outcomes for the people with diabetes – and for NHS Wales.”
Dr Mohammad Al-Ubaydli, CEO and founder of Patients Know Best said:
“Putting young patients in control of their medical records is therapeutic. We know young people with an illness are particularly upset about the loss of control of their lives from illness. They often respond by disengaging, I certainly did so in my teenage years. We also know that outcomes are better for patients the more they engage to look after their health. We are so proud that Patients Know Best will be available to any young person in Wales with diabetes."
The world’s only fully patient-controlled online medical records system, PKB will be working across seven health boards and within every clinical team providing young adult care services in Wales.
The primary focus of the project is to provide better, more consistent services to patients going through big changes in their lives – improving clinical outcomes as a result.
Dr Julia Platts, national clinical lead for diabetes in Wales said:
“We know that young people may can become disengaged with their diabetes care teams when they’re approaching adulthood. This is because these years are often a time of great change – as they are for any young person. It’s a very particular time where we need to provide very particular services. We believe that a patient-controlled records approach will empower young people to monitor and manage their health in a more sophisticated way – and to ensure that their long term health outcomes are improved.”
The roll-out of patient-controlled records by NHS Wales also seeks to facilitate better relationships between young people with diabetes patients, their carers and the health and social care providers serving them across Wales.
Dr Platts continues:
“Good early control of diabetes is essential for reducing complications later in life. So, this project is also about ensuring that we provide excellent support through insulin management, education and psychological services so we receive the best outcomes for the people with diabetes – and for NHS Wales.”
Dr Mohammad Al-Ubaydli, CEO and founder of Patients Know Best said:
“Putting young patients in control of their medical records is therapeutic. We know young people with an illness are particularly upset about the loss of control of their lives from illness. They often respond by disengaging, I certainly did so in my teenage years. We also know that outcomes are better for patients the more they engage to look after their health. We are so proud that Patients Know Best will be available to any young person in Wales with diabetes."
Patients Know Best works with ABMU to help 12 year old Sam to manage his complex condition
Lee Everett-Pride, from Swansea, was involved in one of the ABMU Patients Know Best pilots as her 12-year-old son Sam has juvenile dermatomyositis.
This is a rare auto-immune disease that causes inflammation of the skin and the muscle.
As a result, Sam has seen doctors not only in Swansea and Cardiff but also in London’s Great Ormond Street Hospital.
The PKB system was not fully up and running during the pilot, so Lee was only able to access some of its features – but said it had the potential to be very useful.
Lee said:
“Instead of having to take the paperwork to each of the hospitals for them to photocopy for their records, it’s all there electronically through PKB.
“It allows for easier communication because you can invite doctors or anyone else to access your page.
“There is an option to send non urgent messages to consultants via the tool which will help the patient to manage their own health and could reduce the number of hospital appointments.
“There’s a journal you can use to record symptoms and useful information, and an area to document medication. Both of these are very useful when you are seeing different consultants as all the information is in one place.
“It is in the early stages but once it’s fully up and running I think it is going to be very beneficial to both patient and doctor.”
This is a rare auto-immune disease that causes inflammation of the skin and the muscle.
As a result, Sam has seen doctors not only in Swansea and Cardiff but also in London’s Great Ormond Street Hospital.
The PKB system was not fully up and running during the pilot, so Lee was only able to access some of its features – but said it had the potential to be very useful.
Lee said:
“Instead of having to take the paperwork to each of the hospitals for them to photocopy for their records, it’s all there electronically through PKB.
“It allows for easier communication because you can invite doctors or anyone else to access your page.
“There is an option to send non urgent messages to consultants via the tool which will help the patient to manage their own health and could reduce the number of hospital appointments.
“There’s a journal you can use to record symptoms and useful information, and an area to document medication. Both of these are very useful when you are seeing different consultants as all the information is in one place.
“It is in the early stages but once it’s fully up and running I think it is going to be very beneficial to both patient and doctor.”
