Patients and Families

• Our Patient and Family Experience Vision
• Conditions, Tests and Treatments
• Wards and Departments
• Discharge Information
• Research and Development at LHCH
• Relatives Accommodation
• Our Clinical Outcomes
• Private Patient Services and Facilities
• What Our Patients and their Families Say About Us
• Patient Support Groups
  • Aortic Support Group
  • Little and Often Group
  • Marfans Support Group
  • SURE Group
• Patient Safety
• Patient Information Leaflets
• Customer Care Team
• Equality, Diversity and Human Rights
• Choose and Book
• Contact Us

First Liverpool Annual Marfan Patient Physician Forum

In June 2010, the first Liverpool Annual Marfan Patient Physician Forum was held at Liverpool Heart and Chest Hospital.

The meeting was held with the aim of giving our patients a better understanding of Marfan Syndrome and other connective tissue disorders along with treatment options, both medical and surgical (Liverpool Heart and Chest Hospital has developed a monthly clinic for Marfan and related connective tissue disorders).

The event was organised by the Thoracic Aortic Aneurysm Service at Liverpool Heart and Chest Hospital, in particular Carol Baker our previous Thoracic Aortic Aneurysm Nurse Coordinator.

Beryl Henshaw, the Regional Representative was present, along with Diana Perryman and Geraldine Morley from the Marfan Support Network and about 30 patients and families attended. A variety of talks were presented, commencing with a talk on the development of aortic surgery from the 1960’s, by Consultant Cardiac Surgeon, Mr Mark Field. We then spent some time explaining the terms and phrases used by doctors in this field, followed by a discussion about Marfan Syndrome and Leys Dietz Syndrome and the new understanding and medical treatment of these conditions. After a short interval there was further talks on the surgery of the Aortic root and arch and a brief presentation on the local history story ‘Childe of Hale’ – of John Middleton who was 9 feet 3inches who lived in the 17^th Century and is buried in Liverpool, this led to much interest and discussion.

After lunch the group were then taken to our new Hybrid Theatre, which allows combined open and stent procedures and a talk was led by Consultant Cardiac Surgeons, Mr Manoj Kudavalli and Mr Brian Fabri. One of the anaesthetic nurses informed the group about this part of the ‘Patients Journey’ and one of the perfusionists explained the bypass machine, blood salvage machine and an intra-aortic balloon pump. There was then a demonstration of the imaging system and novel operating bed. One of the ATS valve representatives than demonstrated a range of valves, grafts and equipment which could be handled by the audience. Finally, there was a demonstration of the trays used for surgery, this seemed a very popular with the attendees and there was a fantastic range of questions.

The 2^nd Liverpool Annual Marfan Patient Physician Forum will be held in 2012.

For more information on the LHCH Marfans Support Group please contact Michael Roberts, Advanced Nurse Practioner for Aortic Services, on 0151 600 1006.