The difference that KLS staff can make #1
Post from a HEE supported student on the UCL Health Module.
Reflections from students on the UCL Health Module (2023) – part 1
In the early part of this year HEE Knowledge and Library team members and colleagues from services across England once again had the privilege of supporting the delivery of a Health Librarianship module for Library and Information Studies students at University College London (UCL).
Ten weekly sessions were delivered, on a variety of topics, with the aim of giving the students a broad look at the structure of NHS Knowledge and Library Services.
As part of their assignment, we asked the students to write reflective pieces looking at a topic they had enjoyed from the course. Here is the first piece for you to read. I hope you enjoy their reflections as much as I did.
A case study of the conditions Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS)
I have found case studies very helpful in understanding how the work that NHS Knowledge and Library Services (KLS) Staff do daily leads to tangible results. With this in mind I wished to highlight the difference that KLS staff can make to the experiences of people like me, with a medical condition that is not rare but is rarely diagnosed.
As is stated in the 2021 Knowledge for Healthcare framework Knowledge specialists can shape policy, guidelines and practice and facilitate research. NHS Knowledge specialists’ work can also improve the lives of individual patients by improving patient outcomes and safety, informing treatment options and reducing unnecessary interventions 1. I will consider both the structural and more individual care improvements that KLS staff can provide through a case study of the conditions Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS).
Ehlers-Danlos syndrome is an umbrella term for thirteen distinct disorders which affect connective tissue. HSD is the diagnosis given when the symptoms do not quite fit the full diagnostic criteria for hEDS, but it is treated in the same way as hEDS 2.
Whilst the majority of these syndromes are rare, a study published in 2019 proved that hEDS and HSD were actually ten times more common than was previously thought 3 4. But, as has been noted by the UK Ehlers-Danlos Society, healthcare professionals are often still not aware that hEDS and HSD are common.
These professionals then “risk missing the diagnoses, not knowing how to care for people… and not having the resources to care for them”.5 This was the situation that I experienced up until my diagnosis of HSD in 2017 at the age of 21, after over two decades without appropriate medical support. But with this new evidence and the input of knowledge specialists this need not be the case for patients today
There are several types of health librarian and each of them can help in ensuring that this new information makes real differences to the lives of people living with hEDS and HSD. I will consider the impact of just two of the types here.
Firstly, clinical librarians who work alongside clinical teams can provide them with up to date studies like the one above. This means that medical practitioners who were told hEDS and HSD were rare, or never informed of these conditions because of their perceived rarity, may now take them into consideration.
Secondly, public health and commissioning librarians can provide evidence based knowledge to local Public Health teams and Clinical Commissioning Groups (CCGs). Since CCGs decide what clinical services need to be provided in an area, up to date evidence of a greater number of hEDS and HSD patients may lead to increased resources for them.
Personally, my diagnosis of HSD was delayed as my county did not have the resources to diagnose connective tissue disorders, so I had to be referred out of county. Hopefully in future the input of health librarians across several roles will lead to swifter diagnosis and treatment for patients like me.
Phoebe Brunt