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Band 7 - Clinical Nurse Specialist/Research Nurse

Royal Free London NHS Foundation Trust
£51,488 to £57,802 per annum inclusive of inner London HCA'S
Closing date
20 Jul 2024

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Band 7
Contract Type
Full Time
The Lysosomal Storages Disorders Unit (LSDU) is a designated National Specialist Centre for the diagnosis and management of patients within this group of rare diseases with a genetic inherited pathway. The unit provides a comprehensive diagnostic and clinical service for adults and adolescents with these disorders. Treatment forms include enzyme replacement therapy and substrate reduction therapy. There is also a shared care service for paediatric patients in our family clinic. This Unit treats all patients with LSD and has a very active research and development programme.

This is a hybrid clinical and research role. The post holder will work 3 days in clinical activitiesand 2 days in research activities.

The LSDU participates in a range of clinical trials which focuses on making newly devised treatments available to patients in the form of a clinical trial. Many of these are sponsored by the pharmaceutical industry and are conducted under rigorous conditions. Our unit also contributes to observational studies and registries, some of which are funded by the pharmaceutical industry and others are funded by government or research bodies. The department also undertakes a range of laboratory research studies across a range of LSDs working independently and in collaboration with other units nationally and internationally.

Main duties of the job

New treatments that are developed are eventually implemented as standard of care. This hybrid role is a key role to help facilitate this transition from research to standard of care. This role is instrumental in identifying, approaching, and recruiting patients on ongoing studies. This role will actively develop audits and use data to evaluate the performance of the unit to support continuous quality improvement, learning and compliance with national standards.

About us

Our trust has around 10,000 staff serving 1.6 million patients. It comprises Barnet Hospital, Chase Farm Hospital, the Royal Free Hospital and more than 30 services in the community. This larger scale organisation provides an unprecedented opportunity for us to continue our pioneering work, particularly in finding ways to deliver even better care to our patients.

Our mission is to deliver world class care and expertise in our clinical services, underpinned by world class teaching and research and we will continue to measure our progress against our five governing objectives: excellent outcomes, excellent patient and staff experience, excellent value for taxpayers' money, being safe and meeting our external duties, and building a strong organisation.

Everyone is welcome at Royal Free London NHS Foundation Trust. We're proud of our diversity and we continue to undertake new initiatives to advance equality for LGBT+, BME, gender equality, staff carers and people with disabilities and lived experiences to promote good relations and understanding between our staff.

Click here to view our videoWelcome to the Royal Free

Job description

Job responsibilities

Always maintain a professional behaviour and always promote a positive image of Royal Free London NHS Foundation Trust, in line with World Class Care values.

Work as an expert clinical nurse specialist within the LSD MDT.

Provide expert knowledge, advice and clinical support to patients, carers and health professionals in the care and management of patients with LSD.

Establish and maintain effective communication with patients and carers/relatives and healthcare professionals.

Establish close liaison and communication with and between all disciplines involved in the care of the patients to facilitate a coordinated pathway between hospital departments, primary care and tertiary centres. Provide signposting of patients for appropriate clinical review.

Provide a problem-solving approach in the management of complications of treatment, using expert knowledge of treatments and side effects.

Undertake all procedures in accordance with trust policies and ensure that these procedures and policies are understood and adhered to.

Collect, evaluate and report information, maintaining accurate patient records.
  • Initiates patient care planning and pathways to meet the specific needs of all patients.

Clinical activity including administration of infusions and delivery of clinical care to LSDU patients.
  • Respond to clinical situations utilising clinical judgement and decision making to initiate appropriate interventions and treatment for patients.

Ensure oversight and participate in managing the Homecare therapies workload and prescriptions to ensure safe, quality homecare for patients.

Use sound clinical knowledge and judgement to ensure all necessary medical matters are communicated with allied health professionals concerned. Refer to new services or for investigations as necessary.

Act in accordance with the Nursing and Midwifery Council (NMC) Code of Professional Conduct and Scope for Expanded Practices for Nurses, Midwives and Health Visitors.
Provide/supervise intensive monitoring and surveillance of the patient and is responsible with the clinical lead/PI for assessing, escalating, and reporting any adverse or unexpected events.

Acts as key nurse and demonstrate clinical expertise for patients exposed to novel treatments, procedures and investigations as dictated by the approved clinical trial protocol. Within this provides/ supervises intensive monitoring and surveillance of the patient and is responsible with the PI for assessing, escalating, and reporting any adverse or unexpected events.

To work closely with Chief Investigators and Principal Investigators responsible for a specific trial.

Co-ordinate and conduct appropriate local, national, international phase I, II and III clinical trials utilising knowledge in clinical research methodology, epidemiology, pharmacology, and critical appraisal including setting up a trial, organising feasibility meetings and managing the site initiation visits.
  • Coordinates and monitors the care of all patients on clinical trials as follows:

o Participates in identifying potential patients for trials and reviews referrals from other members of the clinical team. Evaluates eligibility of patients.

o Deliver clinical trials in line with trial protocol.

o Ensure all pre-study tests are undertaken and results obtained.

o Provides written and verbal information to patients and families on the concept of clinical trials.

o Acts as patient advocate and assists in obtaining informed consent and advising the patient of any amendments to the protocol.

o Advises in decisions concerning the treatment, timing of visits and sampling and follow up of patients as per protocol.

o Systematically document patient information via the Trust electronic record system and in relevant research reports

o Collects and prepares biological samples as per protocol in trials where this is required and/or supports the training of suitably qualified laboratory staff.

o Liaises with pharmacy regarding the administration of clinical and trial medication

o Ensures regular checking and maintenance of relevant equipment

o If applicable to clinical setting, participates on the out of hours on call services (see footnote)

o Contribute to protocols, documentation systems, standards, policies, and clinical guidelines for others to use in practice.

o Liaise with other members of the multi-disciplinary team to ensure seamless patient care through the development of protocols and care pathways.

Person Specification



  • Demonstrable ability to meet the Trust Values

Education & professional Qualifications


  • Registered Nurse
  • Recognised research module/ qualification or equivalent short courses and accredited updates
  • Recognised teaching module/ qualification
  • Advanced assessment skills.
  • GCP certificate


  • Completed/working towards Masters degree in a related field
  • Independent nurse prescribing course or willingness to undertake



  • Significant post registration nursing experience
  • Adequate experience of working in Clinical Research.
  • Experience of formal/ informal teaching of patients and staff
  • Experience in delivering evidence based practice
  • Experience of acting as a patient advocate
  • Experience working as a mentor/ clinical teaching
  • Experience of phlebotomy and cannulation
  • Clinical experience in setting where unlicensed drugs are being given.


  • Line Management Experience

Employer details

Employer name

Royal Free London NHS Foundation Trust


Royal Free Hospital

Pond Street



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