HHT and PAVM

Related Services

All services

Locations

Contact

Co-ordinator
020 3313 4831
Secretary
020 3313 1178

Visitor Information

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Visiting

Our HHT and PAVM services care for and treat patients with hereditary haemorrhagic telangiectasia (HHT, also known as Osler Weber Rendu syndrome) and/or pulmonary arteriovenous malformations (PAVMs).

Hammersmith Hospital has had a centre for specialist treatment of these conditions since 1983. We lead the British Thoracic Society’s pulmonary AVM group; from 2016 until Brexit 2021 we were the lead centre for the European Reference Network VASCERN, and we now lead the new NHS Rare Disease Collaborative Network (RDCN) for HHT.

The service receives over 200 referrals each year, provides one-stop clinics after an initial teleconsultation, and conducts on-going research. The service offers well-rounded treatment and advice about lifestyle management for people with HHT and PAVM.

IMPORTANT INFORMATION ABOUT COVID-19

1. For people with HHT and /or pulmonary AVMs: 

2. We encourage people with HHT and /or pulmonary AVMs to have the COVID vaccination when offered. 

Conditions and treatments

HHT is a genetic disorder that leads to the development of abnormal blood vessels. When present in the nose and in the gut, they may bleed. Over long periods, chronic bleeding exhausts the body’s iron stores and people with HHT may become anaemic. HHT also leads to the development of arteriovenous malformations (AVMs) such as pulmonary AVMs (PAVMs).

Pulmonary AVMs (PAVMs) are abnormal blood vessels in the lungs that can occur on their own, or in association with other conditions such as HHT.  If PAVMs are present, blood bypasses the key blood vessels in the lungs which means blood is not processed properly, leading to low oxygen levels and other complications.

While both conditions can lead to the development of other health problems, with appropriate management, people with HHT and/or PAVMs can lead normal, healthy lives.

Clinics

Address

Hammersmith Hospital
Du Cane Road
London W12 0HS

Contact

Our service administrator, Ebun, is on 0203 313 4831 and e.onabanjo@nhs.net

Meet the team

Professor Claire Shovlin, lead clinician
Dr Ali Alsafi, lead for imaging
Dr Nicola Coote, lead for paediatrics
Miss Catherine Rennie, lead for ENT Surgery
Ebun Onabanjo, service coordinator
Jennifer McKenzie, respiratory secretary
Hannah Tighe, principal clinical physiologist

Please note we have multiple colleagues in cardiology, gastroenterology, haematology, hepatology, neurology, and other disciplines who may be involved in your overall management. 

Patient information

Before your face-to-face appointment
We will discuss at your teleconsultation if a face to face appointment is required, and what the likely timeframe will be. 

Along with your appointment letter, we will send you a general information sheet to explain what we will do and what you can expect when you come for review.

As we continue to move out of the Covid-19 pandemic, we have removed many of our remaining Covid-19 measures in line with national NHS guidance. Please check our latest measures before coming to hospital.

During your appointment

Most of our face-to-face appointments take place on the Christopher Booth Ward Programmed Investigation Unit.  You will have tests as required depending on your particular conditions and any tests you have had before- these will have been discussed with you during your previous teleconsultation. Professor Claire Shovlin, our lead clinician, will  review you personally  to discuss your condition and with colleagues, process all of the information to develop a personalised management plan for you. 

Please note that we are a teaching hospital, so medical students may be present for some appointments. If you do not wish to have them in the room please let the nurse or doctor know and the students will be asked to step outside. 

After your appointment

For many patients, just one teleconsultation or visit is enough to get the information that will enable their local doctors to help manage their condition. There are many people we only see once every five to 10 years, either because they are well or because their local doctors can manage their medical issues. 

Some patients may require further investigations or treatments on another day – we will aim to discuss this with you before the end of your first visit to our clinic. 

Additional questions

How long will it take to get an appointment?  
We aim to see you within the 18 week pathway time
Should I do or bring anything to my appointment?  
Please bring the medicines that you take, and any letters or reports that you have from other doctors- but only if you have these already- do not put yourself to any extra trouble.
Can I ask for a chaperone? 
Of course
Who can attend my appointment with me? 
It is usually helpful to have someone else present as they  will help you process information, but this is not essential. See five ways to get the most out of your appointment. 

Refer to this service

GP

Please use NHS e-Referrals to refer a patient to our HHT and PAVM service.

On the NHS e-Referral service please send referrals to: Respiratory Medicine department, Pulmonary AVM / HHT Triage, Hammersmith.

We are unable to accept GP referrals via post or email.

Secondary care

Please make secondary care referrals by letter to Professor Claire Shovlin:

Professor Claire Shovlin
Respiratory medicine
Third floor
Hammersmith House
Hammersmith Hospital
Du Cane Road
London W12 0HS

Service Administrator: Ebun Onabanjo,  
Phone 0203 313 4831
Email: e.onabanjo@nhs.net 

Secretary: Jennifer McKenzie

Phone: 020 3313 1178

 

Additional information

Clinical trials

Generations of people with HHT and/or PAVMs have contributed to our understanding of these important conditions. Usually, no specific extra study is required but from time to time there may be clinical trials running that you may want to join. These are discussed separately and are never compulsory.

Our recent studies have focused on nosebleeds and triggers, oxygen levels and exercise, anaemia, and preventing blood clots, strokes and other complications. We are developing a new 2021 website for you and your doctors to provide these results, and their integration into international consensus, through the NHS Rare Disease Collaborative Network.

Many of you participated in the 100,000 Genomes Project. We are running genomic teleconsultations from February 2021 to discuss your individual results with you – if you have not yet received a letter, please email claire.shovlin@nhs.net to set up the call.  

Further online resources