Simon and Shelley had a very productive meeting with the NHS Digital team last week who lead on data gathering and analysis. This forms a key part of our work to understand the extremely variable experiences of those living with Duchenne in accessing hospital via Accident and Emergency Departments.
During some Freedom of Information requests undertaken last year, we looked for technical and clinical data on Duchenne which can be accessed by front line NHS staff working in local hospitals – unsurprisingly we found that very little information was available.
This can lead to serious difficulties when identifying vital Duchenne patient requirements following an unplanned admission into hospital.
One of the key outcomes we have been seeking is a dedicated code for Duchenne Muscular Dsytophy to be used when collecting patient data. At present the main system used only captures muscular dystrophies as a single group.
We are pleased to report that the replacement system that has been developed has a code specific to Duchenne and we will be pressing for early introduction of this system.
These systems are global ones developed by the World Health Organisation. NHS Digital also explained some other systems that they are using to gather more detailed information, and we will be exploring these further.
NHS Digital are keen to work with patient groups and charities to improve understanding of the needs of people living with rare conditions. Action Duchenne will continue its work with NHS Digital to ensure that the data held on Duchenne Muscular Dystrophy and patient care outcomes for our community are radically improved.
This is an ongoing piece of work and we look forward to reporting back to you on what we know is a key area of concern for families.
We will next meet with the Professional Record Standards Body (PRSB) who ensure that care records exist to improve the safety and quality of health and social care. They ensure that the right information is recorded correctly and can be accessed easily which is of utmost importance for those living with a rare condition such as Duchenne muscular dystrophy.
Image by Farzeymedic
Where’s my chair?
