Following the cancellation of the British Society for Haematology 60th Annual Scientific Meeting, due to take place this week, the British Journal of Haematology have released all accepted abstracts as a supplement to the most recent issue. You can access the abstract list here.
Our two abstracts, which outline our Clinical Service Excellence Programme and an evaluation of the Myeloma UK Infoline service, can be read below.
Myeloma UK: outline of the Clinical Service Excellence Programme (CSEP)
S. Renwick1*, A. Capper2, I. Frost1, H. Parkin1, I. Laketic‐Ljubojevic1
1Healthcare Advocacy Services, 2Patient Advocacy, Myeloma UK, Edinburgh, UK
Myeloma UK is the only organisation in the United Kingdom dealing exclusively with myeloma and related conditions. We provide educational resources/programs for health care professionals involved in caring for myeloma patients. Our aim is to support the roles of haematologists, nurses, GPs and allied health care professionals in providing patients with the best possible treatment and care. Designed in conjunction with myeloma experts, our accredited and easily accessible programs include information about current developments and best clinical practice in myeloma. The resources can be found on the Myeloma UK website and include the Myeloma Nurse Learning Programme, Nurse Best Practice Guides, Clinical Trial Finder, Drug Tracker, medical animations, key clinical guidelines, a GP online training module and supporting materials for Myeloma Grand Round events. In addition, we produce Myeloma Spotlight, a bimonthly e‐newsletter tailored for doctors and nurses.
The Clinical Service Excellence Programme (CSEP) is a Myeloma UK accredited programme, developed in partnership with patients, family members and health care professionals.
Hospitals apply to attain the CSEP award to demonstrate their commitment to providing quality and patient‐focused care: to celebrate success and to identify areas for improvement.
CSEP has been developed to:
- Cover all aspects of clinical care
- Ensure that the patient perspective plays a pivotal role in decisions that affect their care
- Recognise and acknowledge areas of excellence in the hospital team
- Identify and support further developments in patient care
- Gather feedback from patients on their hospital experience
The first stage of the CSEP accreditation process involves the submission of a suitability survey. Upon successful completion, each centre completes a self‐assessment against the eight key themes of the Myeloma UK Best Practice Standards: patient experience; multidisciplinary teamworking; diagnosis and follow‐up; treatment and supportive care; research and clinical trials; end of life care; awareness, education and advice; information and support.
We ask for a minimum of 20 completed Patient Experience Surveys, to corroborate the findings of the self‐assessment. A visit from Myeloma UK, to the participating hospital, enables us to meet the multidisciplinary team and observe the service provided. Evidence gathered from the visit is used to support the results of the surveys and assessments and allows us to produce a detailed report. This report provides clarity regarding the areas of excellence demonstrated by the team and aspects of the service that could be improved. Participating centres need to be at least compliant in all eight areas and have an overall score rated as ‘Excellent’ to attain the CSEP accreditation.
In the past 4 years, over 30 hospitals have successfully completed the CSEP programme, with 10 hospitals registered for 2020. We are currently planning re‐accreditations for centres in our first cohort and look forward to evaluating how they have progressed in the intervening time.
CSEP accreditation is rapidly becoming recognised as a respected, pivotal acknowledgement of myeloma good practice.
Evaluating the role of the Myeloma UK, Myeloma Infoline in the provision of personalised information and care for myeloma patients and their families
Quinn*, E. Watters, S. Dempsey, K. Dolman, C. Donoghue, I. Laketic-Ljubojevic
Services Directorate, Myeloma UK, Edinburgh, UK
Personalised medicine is a key driver in the effective delivery of treatment for cancer patients. This tailored approach enhances over-all success by focusing on the individual rather than using a ‘one-size-ﬁts all’ approach. To successfully deliver personalised care, patient information would also require tailoring to individual needs. While health care professionals are skilled at providing medical information and engaging in shared treatment decisions during consultations, tailoring information to each patient in a busy clinic, with limited resource, can be challenging. This is more evident in myeloma, as this is a complex, rare and individual cancer, with an ever-changing treatment landscape. Myeloma UK carried out a mixed methods study to investigate how the Myeloma Infoline Helpline ser-vice assisted in delivering personalised care to the speciﬁc circum-stances of myeloma patients and their families.
Myeloma UK is the only organisation in the UK that deals exclusively with myeloma and associated conditions and provides a range of information and services for everyone affected by myeloma. The Myeloma UK, Myeloma Infoline and Ask the Nurse Services (a free phone helpline and email service respectively) provide bespoke information and emotional support to service users. These services are delivered by highly trained Myeloma Information Specialists (MIS) with extensive experience of discussing the complexities of this cancer.
The team tailor information to the individual needs of service users, supporting myeloma patients to prepare for shared treatment decisions (by developing questions for their consultations) and reduce emotional distress by discussing their concerns. The MIS team record data and use this for internal evaluation and to improve service delivery. However, evaluation of the contribution of this ser-vice to the provision of personalised information and shared treatment decisions has not been undertaken.
To better understand the role of the Myeloma Infoline in the delivery of personalised care and support, we conducted an extensive service evaluation. We employed a mixed methods design and summarised the anonymised data collected from over 8 years of the service and an evaluation of the service to examine the provision of tailored information and support for shared treatment decisions. The results demonstrate service users better understand their individual diagnosis, the disease and treatment options and are better prepared to engage in treatment decisions with their consultants. This study highlights that tailored care and support has a central role in effective delivery of personalised medicine and care to myeloma patients.