Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how many people in East England are currently awaiting treatment for inherited cardiac conditions; and if he will make a comparative estimate of the length of waiting times with the rest of the UK.

Inherited cardiac conditions (ICCs) are a group of largely monogenic disorders affecting the heart, its conducting system and vasculature. Waiting times data for ICCs is not available nationally in the Waiting List Minimum Data Set (WLDMS). Diagnosis codes, which could be used to identify patients with ICCs, are not collected in the WLMDS. While treatment codes are collected, there are no individual treatment codes for ICCs that could alternatively be used to identify patients waiting for treatment for an ICC. We are therefore unable to separate patients with an ICC from wider cardiac patients in England at a national or regional level.

The NHS England East of England Cardiac Network team for 2025/26 focuses on improving referral to treatment times across cardiology, improving access to cardiac diagnostics and ensuring patients access the specialists service that is required such as the ICC services across Royal Papworth Hospital and Norfolk and Norwich University Hospital.

We are taking steps to improve access to diagnostic equipment and other services for ICC in East England, including new innovations wherever possible. For example, James Paget University Hospital has piloted a scheme that focuses echocardiograms in heart failure referral pathways. This streamlines echocardiogram waits across all conditions. The scheme is now being planned in Queen Elizabeth Hospital King’s Lynn and being considered in Milton Keynes University Hospital as well as in Suffolk and North East Essex Integrated Care Board.

NHS England is also piloting the ‘Beat to Treat’ programme at Queen Elizabeth Hospital King’s Lynn, which uses handheld, AI assisted echocardiograms in clinic and point of care testing for blood tests that are used to assess for heart failure. This will enable results to be received on the day and will allow for treatment to start at the first clinic appointment. This scheme will improve the accuracy of referrals for echocardiogram, refining the waiting list for this scan across all conditions, including ICC.

There are plans to introduce a single point of access for all referrals to the ICC service in Cambridgeshire, namely Cambridge University Hospitals NHS Foundation Trust and Royal Papworth Hospital. Referrals will be triaged by both teams, to either the Royal Papworth Hospital or Cambridge University Hospitals NHS Foundation Trust element of the service and that there would be a clear standard operating procedure for how this would work and be managed, moving therefore to both sites operating as a joint service for these conditions. A multi-disciplinary team is already in place to support this, as well as access to newer therapies.