P40 Re-engagement of haemochromatosis service users to provide best practice

Published Date: 18th June 2023

Publication Authors: Allcoat A

Abstract

Introduction
Haemochromatosis is a medical condition that causes patient to absorb too much iron from their diet. This can accumulate around the body over time, damaging many organs and eventually causing disease. Inheritance of a faulty gene is responsible for an increase in the amount of iron in the body. Symptoms can include fatigue, arthropathy, early menopause, and can also lead to secondary complications such as liver damage, cardiomyopathy and diabetes.

In the UK, up to 1 in 150 people in England and Wales have Haemochromatosis however most are unaware they have this condition.

A local review was undertaken to assess the Haemochromatosis Service that is provided, this highlighted the need for re-engagement of all patients with Haemochromatosis to ensure best practice is maintained by following the national clinical guidelines.

Methods
Pre-Covid Haemochromatosis patients were reviewed in General Gastroenterology Clinics, they were venesected at a specific treatment room, monitoring was dependent on those patients who were compliant with blood monitoring via clinics/ETU.

A retrospective review of 301 patients was carried out prior to the re-engagement of the service. Each patient’s case was reviewed to identify if regular consultations had occurred and if index investigations such as fibroscans had been undertaken.

Results
The local audit shown 52% of 301 patients were classed as high priority for needing a review in clinic. High priority patients were classed as patients who had not been reviewed for over a year or patients who have outdated blood results. Additionally, out of 301 patients, it was highlighted that only 38% of patients had an index fibroscan completed.

It was identified that blood monitoring was not consistent, there was no true way of recording the patients monitoring, and many patients who weren’t as compliant were lost to follow up. The service was disjointed as no clear lead to monitor the patients.

This highlighted the need to produce a streamlined service to provide continuity of care to all patients to ensure they receive timely blood monitoring; appropriate investigations following relevant guidelines and provide a named specialist nurse to be of contact to the patients for any questions or queries they may have.

Conclusion:
This small review identified that post covid pandemic Haemochromatosis patients had been lost to follow up, blood monitoring was not carried out on a regular basis due to the patients being seen in a general gastroenterology clinic and management plans varied based on which clinician reviewed the patient.

Following the local review, a patient focused Haemochromatosis Clinic was created to re-engage all patients. Consequently, a 1–2 weekly Telephone Haemochromatosis Clinic consisting of 8–10 patients. This was carried out on an afternoon via the telephone for convenience of the patient in opposed to the patients needing to attend the hospital.

The aim of the telephone clinic was to assess the patient’s condition on a yearly basis and create an individualized care plan, ensure a full liver screen and fibroscan has been offered to every patient to prevent complications of the condition such as fibrosis and cirrhosis, check up to date ferritin levels are obtained to ensure target ferritin levels are met and 3 monthly blood monitoring is maintained. The clinic has also enabled the patients to discuss worries and concerns regarding their condition they may have; it provided them with a voice to be listened to by a clinician which has had a positive impact on the patients’ journey. The patients are also reassured that their condition is being monitored following the appropriate current guidelines. Additionally, contact details are provided in the form of a Liver Helpline Number to ensure the patient has a named specialist nurse they can contact for further support and queries.

New referrals of newly diagnosed haemochromatosis patients were also directed to the specific Haemochromatosis Clinic from Gastroenterology physicians. This has ensured appropriate management of the patients’ condition from diagnosis; the patient will be informed individually and appropriate literature from the Haemochromatosis UK website is sent in a pack to the patient to ensure they are fully informed. This ensured all patients with Haemochromatosis had a clear management plan, allowing continuity of care, ensuring patients had a specific Haemochromatosis Specialist Nurse to contact for reassurance and all recommendations using National Guidelines were followed.

 

Allcoat, A. (2023). P40 Re-engagement of haemochromatosis service users to provide best practice. Gut. 72(Suppl 2), pp.A66-A67. [Online]. Available at: https://doi.org/10.1136/gutjnl-2023-BSG.112 [Accessed 15 December 2023]

 

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