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Inherited cardiac conditions service

Providing high quality care and psychological support for the patient

Coronavirus: inherited cardiac conditions service update and advice

We know that this is a concerning time for lots of people. Even through the coronavirus (COVID-19) situation, we remain committed to providing you and your family the best – and safest – care possible.

We are changing how we work in the cardiovascular team, so that we can continue providing the best care possible for current and new patients, both in and out of our hospital. These changes are designed to help keep everyone as safe as we can during this challenging time.

Please see our commonly asked questions and the information on this page for further details on changes we are making, and contact details for your clinical team.

Patients

To reduce the risk to our patients, whilst still ensuring they get the care they need, our team of consultants and nurses are carefully reviewing every single patient’s medical history and test results. Following these detailed reviews, they can find which patients need to be seen in person, which patients could have a 'virtual' review, and which patients could safely have their appointment postponed.

We are currently working to contact every patient regarding any changes. We understand that you may have waited some time for an appointment, and we apologise that your appointment may be changed.

After our detailed review, one of the following may happen.

  • In some cases, we are changing appointments to a telephone consultation, and in certain circumstances, a video appointment. This prevents you from having to travel to the Trust.
  • Some patients may be discharged back to their GP and we will write to you if this is the case. If you have been discharged back to your GP, it is because it is safe to do so. If your situation has changed, please let us know.
  • Some appointments may be deferred without a future date being arranged at this stage. If we defer your appointment, this is because we believe it is safe to do so. You will remain on our waiting list and we will contact you in due course. If your symptoms have changed and you think you should be seen, please contact your team so we can give you the help and treatment you need.

If you have not heard from us within three days of your scheduled appointment, please email gst-tr.iccnurses@nhs.net or call 0207 188 9491. Our phone lines are very busy and there may be a wait for your call to be answered.

It is possible that you are seen in more than one service. If your query is specifically about your cardiac condition, you should direct that query as outlined below.

The inherited cardiac conditions (ICC) team consultants are:

If you are under the care of one of these consultants, then you are a patient of the ICC team.

You can email the ICC team nurses on gst-tr.cardiology@nhs.net or call 0207 188 9491. They can help with queries, including:

  • advice regarding your condition
  • medications
  • symptoms
  • questions about seeing your ICC specialist
  • genetic tests and results
  • family screening
  • support groups and other online resources.

GPs

Advice and guidance

We are doing everything we can to support GPs and your patients during the coronavirus (COVID-19) pandemic.  Therefore, prior to any referral, we would strongly advise that GPs to seek advice and guidance via e-RS or Consultant Connect (if it is available in your area). All of our services available on e-RS are set up for advice requests.

This will enable the clinical team to review your request and provide an interim treatment plan for ongoing management of a patient. They can also advise and provide clarification regarding a patient's test results.

The GP can attach documents to the e-RS advice request, which may include diagnostic results, scanned images (e.g. ECGs). Providers can also respond with attachments

e-RS referrals

If you feel that a referral is absolutely necessary, please refer via e-RS and use the 'defer to provider' functionality for urgent/two-week wait (2WW) referrals. Please attach the referral letter at the point of referral/within 24 hrs.

For 2WW referrals, ensure that the patient meets the criteria ahead of referring. Do not refer urgent patients under 2WW as this will overwhelm the service.

We will vet the referral and either book into a virtual appointment or add the patient to the waiting list if they need a face-to-face appointment.

Do not defer to provider routine referrals. Send the appointment request to the patient so they can do this when they are ready to book. Please consider this before making any referral as our capacity to see new patients is very limited.

For any training issues/ technical assistance with e-RS/smartcards, please contact your local commissioning support unit (CSU) or registration authority helpdesk.

Consultant Connect

For south-east London GPs, your Clinical Commissioning Group (CCG) has commissioned the Consultant Connect service so you can also use this to seek advice. We are in the process of expanding our Consultant Connect lines – these will be available Monday to Friday, 9am to 5pm, and the communication will come via your local CCG bulletins. Please share this information within your practice.


Patient with family and nurse

The aim of our inherited cardiac conditions (ICC) service is to improve the diagnosis, treatment and outcome of patients with inherited heart disease. We focus on timely diagnosis, high quality care and psychological support for the patient and their family.

We offer clinics at Guy’s and St Thomas’ and King’s College Hospital. These clinics integrate clinical, familial and genetic assessment in a ‘one-stop’ service which aims to minimise the number of visits our patients need to make to hospital.

For further details about what happens when you come to clinic, please see our inherited cardiac conditions information leaflet (PDF 187Kb).

We work closely with our children's colleagues at Evelina London Children's Hospital to provide smooth transition of care from childhood, to adolescence through to adulthood.

We are also part of King’s Health Partners Academic Health Sciences Centre which brings together research, clinical excellence and world-class teaching to deliver groundbreaking advances in healthcare.

Inherited cardiac conditions

Inherited cardiac conditions are familial disorders that can affect the heart muscle and the heart rhythm. Our team of doctors and other healthcare professionals (multidisciplinary team) provide treatment and support for a range of conditions.

It is important to have specialist input for the diagnosis and treatment of these conditions and for the screening of family members because of the complex clinical and psychosocial issues involved.

  • Inherited heart muscle conditions

    Inherited heart muscle conditions are also known as cardiomyopathies.

    These include:

    • hypertrophic cardiomyopathy (HCM)
    • dilated cardiomyopathy (DCM)
    • arrhythmogenic right ventricular cardiomyopathy (ARVC) / arrhythmogenic cardiomyopathy (AC)
    • restrictive cardiomyopathy (RC)
    • left ventricular non-compaction (LVNC)
    • PRAKAG2 associated cardiomyopathy
    • AMPK related dilated cardiomyopathy (DCM)
    • genetic infiltrative conditions such as Danon disease, Fabry disease and transthyretin (TTR) amyloid.

    These conditions can lead to heart failure.

  • Inherited heart rhythm conditions

    Inherited heart rhythm conditions are also known as inherited arrhythmia syndromes.

    These include:

    • long QT syndrome (LQTS)
    • short QT syndrome (SQTS)
    • Brugada syndrome (BrS)
    • sudden arrhythmic death syndrome (SADS)
    • catecholaminergic polymorphic ventricular tachycardia (CPVT)
    • some forms of inherited Wolff-Parkinson-White (WPW) syndrome
    • idiopathic ventricular fibrillation (VF) arrest

    These conditions can cause problems with the heart rate and rhythm.

  • Other conditions

    Other conditions seen in the ICC service include:

    • inherited neuromuscular disease associated with cardiac involvement – myotonic dystrophy, limb girdle muscular dystrophy, Emery-Dreifuss muscular dystrophy, Becker muscular dystrophy and Duchenne muscular dystrophy
    • inherited  aortopathies – Marfan syndrome (MFS), Loeys Dietz syndrome (LDS), Ehlers Danlos syndrome (EDS), Arterial Tortuosity Syndrome (ATS), Turner Syndrome (TS), non-syndromic thoracic aortic aneurysms and dissection (TAAD) and bicuspid aortic valve associated aortic aneurysm and dissection
    • mitochondrial disorders with cardiac involvement.

Facilities and services

We have access to the following:

  • facilities for minimally invasive electrophysiology investigation (EP studies and implantable loop recorder (ILR) (PDF 153Kb) insertion) and coronary artery investigation (coronary angiography) (PDF 466Kb)
  • diagnostic ajmaline testing for patients with suspected Brugada syndrome
  • facilities for permanent pacemaker (PPM) and implantable cardioverter defibrillator (ICD) insertion
  • genetic testing, including specific blood tests which relate directly to ICCs.
 

Related Items

Coronavirus

Please visit the main Trust coronavirus (COVID-19) page for more information.