HC Deb 12 May 2004 vol 421 cc14-6WS

Membership

The group will be composed of external stakeholders similar to the expert external reference groups who helped create the national service framework for coronary heart disease with voluntary and professional organisations being invited to take part. Patients, cardiologists, GPs, nurses and members of voluntary and professional organisations (including CRY, the Ashley Jolly SAD Trust, Hearty Voices, the British Cardiac Society and the British Pacing and Electrophysiology Group) will be asked to join. Representatives from Wales, Scotland and Northern Ireland will also be invited.

Other Stakeholders

We will be holding a stakeholders' event during the consultation period to raise awareness of the new group and invite wider consultation and participation. This will help to ensure that the key issues are covered and that the outcomes address the needs of all the interested parties. If you would be interested in attending this event, please e-mail your name and contact details to Jennifer.francis@doh.gsi.gov.uk

Proposed Workstreams

We propose four key workstreams for the expert group to manage its work, sudden cardiac death and screening; acute care; cardiac interventions; and patient involvement and support.

Sudden Cardiac Death and Screening

It is estimated that 200–400 young people die from sudden cardiac death syndrome each year. Dari Taylor MP's recent Private Members Bill highlighted a number of important issues that the new NSF chapter will need to address. These include: Raising awareness of signs and symptoms of conditions that may lead to sudden cardiac death; Support for those who have lost relatives or friends; Considering the feasibility of guidelines on how these deaths are certified; Setting standards or practice recommendations around how suspected cases are treated in primary care; Promoting models of good practice for local use; and Design of an evidence-based protocol that clarifies when it is recommended that patients and/or their relatives should ideally be invited for screening.

Acute Care

For many patients the first sign of their cardiac condition is an emergency admission to hospital. Those who know they have the condition but whose care is not well managed may also need urgent treatment. Arrhythmia is consistently in the top 10 reasons for hospital admission, using up significant A&E time and bed days. This workstream will cover: Design of a care pathway showing the ideal treatment of those who require emergency care for these conditions; Outlining what information patients require when in hospital to help them successfully manage their condition after discharge; Considering the feasibility of setting or practice recommendations around readmission rates for those with conditions which could be better managed; and Development of a set of audit indicators and suitable performance indicators that might be used locally around emergency care for those with arrhythmias and conditions which may lead to sudden cardiac death.

Cardiac Interventions

Since publication of the NSF there have been significant improvements in both the technology and the clinical capacity to intervene to treat arrhythmias and related conditions, giving more options for this group of patients in terms of both diagnosis and treatment. New emerging technologies such as the implantable cardioverter defibrillator (ICD) or more sophisticated pacing devices, with good medical evidence for their use, has given the cardiologist many more treatment options in 2004 compared to the 1990s. This workstream will cover: Design of a care pathway for the diagnosis, management and treatment of arrhythmias and conditions which may lead to sudden cardiac death (considering cardiomyopathies, atrial fibrillation and electrical conduction disorders); Identification of models which deliver the appropriate interventions reliably; and Development of audit measures and suitable performance indicators around the care and treatment of people with these conditions, which might be used locally.

Patient Involvement and Support

Patients with a lifelong or long to term cardiac problem need continuing support to help them manage their condition and live as full a life as possible. Assistance also needs to be available for carers and family members where they wish it. Patients need to be involved in decisions about their own care and in helping to shape the planning of services. This workstream will include: Design of care pathway for management and control of specific conditions (for example, atrial fibrillation); Development of guidance on monitoring patients with chronic conditions; Identifying effective ways of providing emotional support to patients and their relatives where appropriate; and Identifying effective means of involving patients in their own care and in influencing the way that services are provided.

Next Steps

Ideas and proposals should reach the project team by 4 August 2004 at the latest.

The Department of Health would welcome contributions throughout the consultation. Emerging issues and contributions will be fed into the discussions of the expert group and used to develop the proposed new NSF chapter on arrhythmias and sudden cardiac death.

The information you send to us may need to he passed to colleagues within the Department of Health and/or published in a summary of responses to this consultation. We will assume that you are content for us to do this and, if you are replying by e-mail, that your consent overrides any confidentiality disclaimer that is generated by your organisation's IT system, unless you specifically include a request to the contrary in the main text of your submission to us.

Contact Details

We will ensure that this consultation meets the following criteria: Consult widely throughout the process, allowing a minimum of twelve weeks for written consultation at least once during the development of the policy. Be clear about what your proposals are, who may be affected, what questions are being asked and the timescale for responses. Ensure that your consultation is clear, concise and widely accessible. Give feedback regarding the responses received and how the consultation process influenced the policy. Monitor your department's effectiveness at consultation, including through the use of a designated consultation coordinator. Ensure your consultation follows better regulation best practice, including carrying out a regulatory impact assessment if appropriate.