Haemoglobinopathy Education Medical Writer

Haemoglobinopathy Education Medical Writer

The closing date is 08 March 2026

The haemoglobinopathy education programme is funded by the health and inequalities team within NHSE and is aimed to locate, develop, create and improve education tools on haemoglobinopathy diagnoses, in a patient‑centred way for affected individuals, parents and carers, health care professionals (HCPs) and the public.

The NHS Long Term Plan, published in January 2019, set out key actions to reduce healthcare inequalities across the system.

This post is aimed at a driven self‑directed and highly organized collaborative individual, who has ability to compile, review and write medical information in lay language aimed at patients, carers and the public. The post holder will need to consult with and interact with clinicians, patients and the public. The first priority of this role will be to complete an educational resource on Thalassaemia that is comprehensive, patient centred and reflects the full spectrum of experience across the life span.

The post holder will work with the whole team including the senior manager, clinical fellow and the project lead to agree key performance indicators by which success will be measured at the outset.

The post holder will work with a core haemoglobinopathy education programme team, which will consist of a senior project manager, a clinical fellow and the education project lead Dr Kesse‑Adu – a specialist in managing patients with haemoglobinopathy diagnoses. The post holder will also be required to coordinate and work constructively with patient groups, the education leads across all 10 Sickle cell and the 4 thalassaemia HCCs, to ensure involvement from the clinical community involved in patient care and to raise and maintain awareness of the project.

Produce an evidence based, complete set of information for individuals with haemoglobinopathies starting with Thalassaemia across the life span covering:

• Inheritance
• Early life
• Childhood
• Transition
• Conception/fertility
• Adulthood

The information must be comprehensive and include known common complications, common medical and surgical interventions, advice to parents and carers including managing life in general, health issues, education, reproduction, work and travel.

The post holder should be able to communicate the highly complex medical information to a patient audience in an accessible manner (verbal, written and numerical).

Coordinate and collaborate with multiple external stakeholders including HCC network education leads, clinical experts and patient groups and forums.

Participate in clinical governance activity to ensure information produced is complete and evidence based for both, adult and paediatric.

Support and work collaboratively with the overarching haemoglobinopathy education project team in other areas as deemed appropriate and necessary by the project lead to ensure timely delivery of the project.

Maintain flexibility in the working week to participate in activities with the objective of ensuring a high standard of the completed project.

• Participate in regular scheduled and ad hoc meetings with the project team
• Report regularly to the project lead and senior project manager
• Participate in events to launch and publicise the project and as part of this, the post‑holder will prepare a report of the completed work, suitable for different audiences including patients, HCCs, the project lead and funders

• Evidence of recent and ongoing continuing personal development relevant to the role

• Previously worked at band 7 or equivalent role
• Evidence of medical writing (medical publications)
• Experience of collaborative working with multiple stakeholders
• Experience working across organisational boundaries in the Health Service
• Experience of developing material with input from patients, families/carers and HCPs.
• Publications in the field of haemoglobinopathy
• Experience of working in a multidisciplinary team and delivering a finished project in time

• Understanding of haemoglobinopathies especially thalassaemia
• Direct experience delivering a project for a high need but rare group