Health Profiles enabling fast and easy access to vital information about patients with learning disabilities
This time last year, we announced the launch of the Once for Wales Health Profile, a tool that researchers at the University of South Wales (USW) helped to develop to support people with a learning disability in Wales.
Researchers Professor Ruth Northway, Dr Stacey Rees and Dr Edward Oloidi from USW's Unit for Development in Intellectual and Developmental Disabilities (UDIDD) worked with Improvement Cymru – part of Public Health Wales – to shape the Once for Wales Health Profile.
The profile, also called the Health Passport, provides people with a learning disability with a personalised document that provides an individual health profile to take to appointments and emergency admissions. This key information can then be used by healthcare providers to deliver safe, person-centred healthcare.
A year later, the Profile is being implemented across Wales.
Sarah Wildblood, a Staff Nurse on a psychiatric ward at Llanarth Court Hospital, said: “We were introduced to the Once for Wales profiles when they were launched. This happened to coincide with us putting together new folders of vital information that could be taken with our patients in emergency situations.
“Our patients have mental health conditions, alongside learning disabilities, and frequently have other physical health conditions which can be overlooked. We used to use the Health Passports, but they were infrequently updated and were not easily accessible to all staff.
“Patients can take the new health profiles to their GP appointments in person or online. However, the GP and supporting staff may not know the patient well, be unaware of the full medical history, or the patient themselves may not be able to explain.”
A USW learning disabilities nursing graduate herself, Sarah and her colleagues are having great success with the health profile.
She said: “There has been positive feedback, including that they are more concise and appropriate, compared to other documents we have used. Staff and patients have also liked that they are visually like other 'Easy Read’ documents that our patients are used to. We encourage our patients to be involved in the co-production of the profiles and many of them have enjoyed having the opportunity to take ownership of this.
“As well as being used in an emergency, the profiles also allow fast and easy access to vital information about our patients for new or unfamiliar staff, which is so important in such a large hospital. The Health Profile is an important addition to this file since it is often an overlooked area in mental health/learning disability secure provision when the focus is frequently and understandably on risks.
Sarah added: “I also find the profiles useful for primary nurses when admitting new patients, it is concise enough for to be included in the initial assessment on arrival to the ward, quickly giving an overview of the patient’s health status.”
"People with learning disabilities can experience many barriers to accessing timely, safe and appropriate healthcare," said Professor Ruth Northway (pictured right) whose research expertise includes the health and well-being of people with learning disabilities, safeguarding, ethics and professional issues in learning disability nursing.
"It is great to see our research informing the development and implementation of the health profile and to hear that it is having a positive impact in reducing such barriers, " added Ruth.
Paula Phillips, Senior Improvement Manager at Improvement Cymru, said: “Collaborating with USW has been critical in being able to deliver an evidence-based, co-produced and person-centred approach to address an area of significant patient safety for people with learning disability in Wales.”
Formed in 2003, the Unit for Development in Intellectual and Developmental Disabilities’ (UDIDD) mission is to work in partnership to enhance quality of life and quality of service provision for people with intellectual disabilities and their families and carers. It does this via an integrated programme of intellectual disability research, education and practice that includes a focus on end of life care; safeguarding and participatory research. Contact UDIDD.
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