Shared care records need to take a patient-centric approach to prevent harm and save lives.
In his DCR webinar presentation, John Farenden provided some detailed case studies, highlighting past failings, which had led to coroner’s reports highlighting the inability of health and care organisations to share information properly.
Farenden, NHS England Senior Programme manager for national shared care records, touched on a range of tragic cases:
- Brooke – A 19-year-old who took her own life three years ago after suffering from mental illness. She had an emotional unstable personality disorder and hung herself. The coroner’s report highlighted a lack of adequate record sharing
- Amy – a 23 year old who had encountered problems of getting in touch with the out of hours GP. Other health staff had problems getting information on her record and were unable to provide her with the correct medication. She took her own life.
- Julie – the acute trust could not access her community records which were not fully digitalised, leading to a communications breakdown and a lack of sharing of the 42-year-ilds records
- Tamara – a 13 year old who saw health and care professionals 47 times during 4 years but every visit was seen as a unique medical record and so there was a general unawareness of her health
- Ahsiyah – practitioners missed her blood gas results and didn’t realise she had high potassium levels. The Trust didn’t see this as worthy of further action.
Farenden challenged his audience on the webinar: asking, “Why don’t we see these as never events”, which can be prevented. “People’s information can be shared and we can save lives and prevent harm.”
He touched on his 94 year old mother-in-law Clare, who had had contacts with lots of different health and care services. In 12 months, Clare had 24 different providers but none had a complete picture of her whole life. Suffering from Alzheimer’s, the provider said they were not getting much response. The reason was they using her first name, Mary, and she always went by her second name Clare: “She didn’t respond to Mary because it wasn’t her name”.
He also spoke of the case of Branwen, a teacher in London, who has contributed to the “One London” initiative. She felt unwell after a minor operation but encountered lots of services and struggled with lack of joined up care. She said if the clinicians had access to all of her previous appointments it would have been life-changing: “Mechanics in a garage have all the information about a person’s car so why is it so hard?”
Farenden said the concept wasn’t new, highlighting a paper talking about an integrated care record service across health and social care and based around the person that was published 20 years ago.
He said there was evidence of benefits of shared care records – by looking at people holistically and one record – both the length and quality of life was enhanced.
“I’d like to encourage us all to think more about the person and less about the provider.”
It should be the person’s record that is contributed to and consumed by people in GP practices, hospitals, social workers to which the individual contributes to so that they can tell their story once and expect all those in the health and social care system to understand their situation.
He said a top NHS priority in 2022/3 is to support the exchange of information between shared care records in place and the wonderful work going on around the country, to help people in an integrated care system and to scale up that work nationally.
“This will enable a Dorset resident that is taken to a Somerset, Hampshire or Devon hospital to know that their treating clinicians have the same access to information as if they went to Dorchester or Bournemouth.”
- To listen to the whole webinar and questions go to DCR Webinar with John Farenden Shared Care Records : Clare, Ellie, Jane and Branwen 20220525 100 – YouTube
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