Tackling Unmet SCD Needs Must Begin at Its Source: In Care.

Distilled Post Editorial Team

As individuals and as a community, the challenges that Sickle Cell Disease (SCD) patients face are unlike any other.

From the time they are admitted to A&E to being discharged out of hospital, many SCD patients encounter unique, but inevitable barriers to their care. Ranging from delayed ambulance arrivals to being refused critical pain relief medicine, these events often result in poorer outcomes and a higher risk of mortality.

Sanius Health organised the 'Patient Care, Experience & Outcomes Improvement Planning Workshop' in response to requests from Sickle Cell Disease (SCD) community members. This event provided valuable insights into the challenges faced by SCD patients and potential solutions to address them. The workshop fostered collaborative discussions to identify where patients most likely experience difficulties in their care. In bringing these to the fore, the workshop gave members of Sanius Health's ecosystem the opportunity to hone in where improvements could be made - for them and for thousands of others across the UK.

Identifying Where Core Issues Begin in the Patient Pathway

The core motivation for hosting the Patient Care, Experience & Outcomes Improvement Planning Workshop’ was to provide a forum for open discussion around inpatient care. In particular, one that empowered patients in identifying, addressing and overcoming some of the challenges they face while in care.

At the workshop, attendees had the opportunity to lead discussions around current issues in their care, the role of on-the-ground advocates, and how they could create the means to meet these challenges head-on. While discussing the group’s collective experiences, it became abundantly clear that a specific set of challenges were regularly felt by many. These included, but were not limited to: the lack of understanding of SCD as a condition among health professionals, disparities in administering care according to individual pain protocols, and the absence of people who can advocate for patient care when they are most vulnerable.

Many of the workshop’s attendees felt that the genesis of the challenges they see at inpatient level begin at A&E. In their experience, this is where patients are most likely to see the repercussions of a lack of SCD knowledge, training and understanding of the disease. The consequences of which, they believe, can result in patients experiencing poorer outcomes and life-threatening events.

What were the Core Issues Discussed?

The attendees stated that creating an educational framework around SCD care would be beneficial for patients, health professionals and the community as a whole. Lowlah Bloom, another attendee, agreed; adding that the “lack of standardised educational or awareness frameworks” meant that there is “inconsistency” across multiple Trusts in terms of care staff knowledge on SCD. She notes that this is especially evident in terms of how able and ready care teams are to provide the correct care, at the correct time:

“I firmly believe that SCD patients do their part to advocate for themselves. It is the most that we can do when the people who are meant to be delivering our care aren’t aware of our specific health needs - both as a patient group and as individuals. I feel that despite our efforts, despite us repeating what is written in our medical histories and files, we still aren’t heard. This is really obvious when you compare how some care teams and hospitals look after us. Some get it right, and many more don’t. This is the result of inconsistent in training for SCD care”

Achieving consistency in SCD care is made more difficult due to the fact that misinformation around the condition remains rife. Peter Adefowora, who attended the workshop believes that this gap is created by the lack of in-person and knowledgeable patient advocates on the front lines.

“I have personally had similar experiences, where there has been a lack of empathy, lack of a standardised plan for my care, meant that those who were meant to be safeguarding my health couldn’t. During these incidents, it was clear that people did not know what was going on, or what they needed to do. It is almost as if there needs to be a middle-man there - someone to help patient and provider navigate their care journey”

Constructive solutions for pathway-wide challenges:

As a whole, those who attended the workshop reached the consensus that advocacy needs to be enhanced - in all of its forms. When analysing this unique relationship between care teams and patients, the attendees identified that establishing robust frameworks, positioning knowledgeable individuals to support patients and enhancing awareness, were the key solutions that the group felt were most needed across the SCD care pathway.

Based on the productive and candid conversations shared among the group, those who attended the workshop organised by Sanius Health shared a set of solutions that could change the way that they receive care. Rooted in enhancing support and awareness, the workshop emphasised the need to enhance advocacy at moments of heightened vulnerability.

In summary, enhancing the experience of Sickle Cell Disease patients in hospitals necessitates a comprehensive strategy incorporating education, specialised training, effective pain management, emotional support, and innovation in research. By collaborating to tackle these challenges, hospitals can deliver better care to SCD patients, improving their well-being and reducing the negative impact of poor care.

Sanius Health is an an award winning AI-powered patient-generated data platform with a focus on accelerating personalised medicine, drug discovery and clinical research for cancer treatment, haematological malignancies, haematological disorders and rare diseases.

To learn more about how Sanius Health supports patients, health organisations and communities, visit: www.saniushealth.com