HHT and PAVM
Contact
- Co-ordinator
- 020 3313 4831
- Secretary
- 020 3313 1178
Visitor Information
Translation help:
To translate this page into your preferred language, click the Google Translate icon in the top-right menu and select your desired language.
Our PAVM and HHT services care for and treat people with pulmonary arteriovenous malformations (PAVMs) and/or hereditary haemorrhagic telangiectasia (HHT, also known as Osler Weber Rendu syndrome).
Hammersmith Hospital has had a centre for specialist treatment of these conditions since 1983. From 2016 until Brexit 2021 we were the lead centre for the European Reference Network VASCERN, and we set up and lead NHS Rare Disease Collaborative Networks (RDCNs) for both conditions.
The services have evolved to cope with the vast number of referrals, for tens of thousands of people with these conditions in the UK. You may find that if you are referred to our services, we cannot accept you for direct care, or you may have a very long wait for what turns out to be a single appointment. We realise this may be frustrating for you and your local doctors, so provide information to help such as online materials about evidence-based treatments or lifestyle advice. We are working with existing patient partners to help make this information easier to access at the time it is needed. We also conduct research in order to improve the care that we and other healthcare professionals can provide to you, in order to improve your heath.
Conditions and treatments
Pulmonary arteriovenous malformations AVMs (PAVMs) are abnormal blood vessels in the lungs that allow blood to bypass smaller blood vessels called capillaries. PAVMs are present from teenage years, affect more than 20,000 people in the UK, but usually remain undetected unless x-rays or scans are performed. Over a life-time, PAVMs often cause complications but these can be safely prevented with appropriate treatments. Everyone with PAVMs should have an antibiotic immediately before dental care or surgery; extra care is needed for Mums in pregnancy, and you will be advised to avoid scuba diving. Some people will be recommended to have interventional treatments.
Hereditary haemorrhagic telangiectasia (HHT) is a genetic disorder where AVMs may be present in the lungs, or in other parts of the body. We follow pathways as generated by the experts in the European Reference Network VASCERN. Most people with HHT experience regular nosebleeds and these may need attention from specialised ENT doctors, as well as replacement of lost iron to prevent and treat anemia. In addition to any medical problems that people with HHT may have, everyone with HHT should be checked for pulmonary AVMs; extra care is needed for Mums in pregnancy, but having HHT should not change the way doctors look after you in most other situations. For people with severe HHT, NHS England does not currently commission treatments used extensively in other countries, but we are working with colleagues to try and change this. Genetic testing is available on the NHS.
It is important to remember that while both conditions can lead to the development of other health problems, with appropriate management, people with PAVMs and/or HHT can lead normal, healthy lives. Life expectancy is normal in HHT, we think because of benefits from HHT that are just beginning to be understood.
Clinics
Christopher Booth Ward Programmed Admissions Unit
Hammersmith Hospital
Du Cane Road
London W12 0HS
Contact
Our service administrator, Ebun, is on 0203 313 4831 and e.onabanjo@nhs.net
Automated general advice for health care professionals can be accessed through the autoreply at claire.shovlin@nhs.net
Meet the team
Professor Claire Shovlin, lead clinician
Dr Ali Alsafi, lead for imaging and embolisation
Miss May-Al-Sahaf, lead for thoracic surgery
Dr Nicola Coote, lead for paediatrics
Miss Catherine Rennie, lead for ENT Surgery
Miss Bryony Jones, lead for obstetrics
Dr Vinnie Sodhi, lead for anaesthesia
Dr Maneesh Patel, lead for brain imaging
Dr Harri Jenkins, lead for neurology
Ebun Onabanjo, online service coordinator
Joe An Cabuntug RN, lead face to face nursing service
Julie Ranger RN, Christopher Booth Ward lead nurse
Hannah Tighe, principal clinical physiologist
Please note we have multiple colleagues in cardiology, gastroenterology, haematology, hepatology, and other disciplines who may be involved in your overall management.
Patient information
After referral to our services
The letter from your GP or hospital doctor will be reviewed by Professor Shovlin to see if we can accept the referral. If we do not, we try to provide helpful information to your local doctors. Please note that we do not offer emergency reviews and if you have any urgent problems you must be seen by your local doctors. It may be helpful to take them the automated general advice for doctors available through the autoreply at claire.shovlin@nhs.net.
During your appointment
Face-to-face appointments take place on the Christopher Booth Ward Programmed Investigation Unit. You will be asked to arrive mi-morning and spend the rest of the day with us. Exact tests required will depend 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?
Unfortunately, this specialised service can have a long waiting list to the first teleconsultation but the face to face appointmnet is usually organised within a few weeks of that call.
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. We recommend you take a look at advice on five ways to get the most out of your appointment.
Refer to this service
GP
Please use NHS e-Referrals (REGO) to refer a patient:
Send referrals to: Respiratory Medicine department, Pulmonary AVM / HHT Triage, Hammersmith.
We are unable to accept GP referrals via post or email.
Secondary care
Secondary care referrals are also processed via Rego following upload of any letters or emails. Please ensure you provide an email contact so that you can be informed of the outcome of referral vetting. 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 (answer phone, and not an emergency service)
Email: e.onabanjo@nhs.net
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 studies running that you may want to join. These are discussed separately and are never compulsory.
Further online resources
- HHT from VASCERN HHT—a short YouTube video introduction to HHT
- THE OXYGEN TRAIN—particularly useful if you have low oxygen levels or anaemia