Introduction

The national service framework for coronary heart disease, published in March 2000, heralded a new era for the development of fast and modern services for the prevention and treatment of heart disease. Four years on from its publication, the combination of a clear set of national standards, sustained levels of investment and reform and redesign of services has delivered real improvements for patients. Primary care has made extraordinary progress in ensuring that patients with heart disease are on the right combination of drugs to lengthen their lives. Waiting times for bypass surgery and angioplasty have fallen dramatically. Patients with a heart attack are treated quickly with life-saving clot busting drugs.

With significant progress now secured for patients with coronary artery disease, the NHS is now well placed to deliver similar improvements for patients with arrhythmia and with syndromes that can lead to sudden cardiac death. These patients have already benefited from the substantial growth in NHS staff, equipment and facilities. The Government have now agreed to drive further progress for these patients by working with patients, families and NHS professionals to develop new NSF standards or practice recommendations for these conditions.

The strength of the existing NSF has been that it is based on the views of clinicians, patients and their families. Its aims and approaches have credibility with those who deliver it and those who benefit from it. The aim of this consultation paper is to invite initial comments from everyone with an interest in these issues to ensure that we can build a similar consensus for this new NSF chapter.

The views received will be considered by a new expert group that is being established by the Department of Health to take forward the task of writing the new NSF chapter. Detailed membership of the group will be published shortly, but it will include patients, relatives of patients, patient organisations, professional bodies, experts in the field, health service managers and other Government Departments with an interest. The group will be chaired by Dr. Roger Boyle, national clinical director for heart disease, and is aiming to produce the new chapter within twelve months.

The attached paper sets out the proposed scope of the work and how we propose to take the work forward. In addition to your comments on this way forward, we would welcome specific views on:

Whether the scope covers all the aspects of these conditions which the new NSF chapter should cover;

Examples of existing good practice in the management of these conditions that might inform the work of the expert group;

Views on the obstacles to progress on developing state of the art services for these patients, and suggestions on how these might be overcome;

Areas where further research is needed to improve understanding of these conditions;

Views on what the immediate, medium term and long term priorities should be for these services; and

How best to ensure that the patient, family and carer perspective is at the forefront of policy and service development.

Details of how to respond to this consultation are included at the end of this document.

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

• New NSF Consultation
• Heart Team
• Department of Health
• 403 Wellington House
• 133–155 Waterloo Road
• London SE1 8UG
• Email: chdnsf@doh.gsi.gov.uk
• Website: www.dh.gov.uk/consultations
• Telephone: 0207 972 4513
• Annex: Consultation Criteria
• Code of Practice on Consultation

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.

The council further demonstrated its commitment to improvement by entering into a public private partnership agreement, in January 2004, to deliver a number of its services, including benefits.

The major challenge for the council now is to continue to improve its benefits processing performance. This will be helped by a more systematic approach to planning, backed up by improvements to its management information and reporting systems.

The report makes recommendations to help the council address weaknesses and to further improve the administration of housing benefit and council tax benefit, as well as counter-fraud activities.

My right hon. Friend the Secretary of State is now considering the report and will be asking the council for its proposals in response to the BFI's findings and recommendations.

contact people aged 50 and over who are not in work, and encourage their use of Jobcentre Plus services or volunteering opportunities;

market the back to work help, employment and volunteering opportunities available and overcoming the concerns of some IB and IS clients that their benefits may be affected if they approach a Jobcentre Plus office with a work related enquiry; and

promote the back to work help available through Jobcentre Plus to people aged 50 and over who may not be aware of this help or who do not normally have contact with Jobcentre Plus.

The evaluation of these pilots will demonstrate what methods of contact and awareness raising worked most successfully to encourage people who would not otherwise have asked about or taken up Jobcentre Plus services and work or volunteering opportunities to do so. The methods that are most successful can then be disseminated throughout Jobcentre Plus to be incorporated into the continuous improvement of their services.

The pilot will run in seven Jobcentre Plus regions for two years and commenced in April 2004. The organisations that successfully tendered for the pilot are as follows:

website www.defra.gov.uk, and have today been placed in the Libraries of both Houses.

The Government will carefully consider the conclusions and recommendations of both Reviews, which were broadly compatible, before issuing a further statement.

It is a bold and innovative plan. The new Commission will have a dual remit to challenge discrimination and promote equality of opportunity and human rights.

We believe there is an opportunity for it to create a strong, proactive relationship with private sector employers, both large and small, and service providers to maximise progress towards equality.

The Commission for Equality and Human Rights will bring together the work of three existing equality commissions—the Commission for Racial Equality (CRE), the Equal Opportunities Commission (EOC) and the Disability Rights Commission (DRC). It will also support new laws outlawing workplace and vocational training discrimination on grounds of religion or belief, sexual orientation and, in time, age.

We owe the existing Commissions a debt of gratitude for their work in changing attitudes and practice on disability, gender and racial equality and their hard work in bringing us to this point. Now we are ready to adopt fresh approaches to meet new challenges.

In making today's announcement, we have taken account of the responses to the Government's consultation document Equality and Diversity: "Making It Happen" and the Sixth report of the Joint Committee on Human Rights.

The White Paper owes much to the discussions of the CEHR Taskforce whose membership reflected the broad range of interests involved in this issue, including the existing Commissions. The Taskforce advised Government on a number of key issues for the new body through an innovative and open process.

We are grateful to all its members for so willingly sharing their depth of expertise. Their participation and contributions are an important aspect of our wider policy development, and have informed the White Paper significantly.

The White Paper sets out the proposed vision, functions, powers and governance arrangements for the CEHR. It outlines the work the body will be expected to carry out to support key stakeholders; it sets out the Scottish and Welsh dimensions of the new body and also maps out the road to implementation.

The Core Duties of the New Body

The proposed core duties of the CEHR set out in the document will be to:

Encourage awareness and good practice on equality and diversity.

Promote equality of opportunity between people in the different groups protected by discrimination law.

Promote awareness and understanding of human rights.

Work towards the elimination of unlawful discrimination and harassment.

Promote good relations among different communities and between these communities and wider society.

Additional responsibilities will include:

Keeping relevant legislation under review.

Acting as a centre of expertise on equality and human rights.

Key Issues in the White Paper

The increasing complexities of our diverse society require appropriate tools to challenge discrimination and enforce the law. Our proposals build on the existing Commissions' powers and create a selection of tools for the CEHR to enforce discrimination law effectively.

The White Paper sets out detailed proposals on the role of the CEHR in promoting a culture of respect for human rights and improving public service delivery. The human rights framework will also be used to help balance potentially conflicting rights.

The Government propose that the CEHR will have an obligation to consult stakeholders on its strategic plan. The CEHR will clearly set out how, when and with whom, it intends to consult.

To ensure experience and expertise is not lost from the existing Commissions, the CEHR Board will also, for a transitional period, have three additional reserved seats for a commissioner from the CRE, the DRC, and the EOC.

The White Paper recognises the distinctive issues that arise for disabled people in the establishment of the CEHR and the need to ensure effective transition from the DRC. The Government propose that the nominated transitional DRC commissioner is appointed to sit on the CEHR board until vesting day. After that date, we will ensure, via a statutory requirement, that at least one person who has, or has had, a disability is appointed to the CEHR Board.

The White Paper also proposes a Disability Committee, with disabled people making up the majority of its members. This Committee will have authority to set strategy, develop policy and monitor delivery for specific areas of the CEHR's disability work, and will be subject to a mandatory review after 5 years of the continuing case for the committee. This will give disabled people a clear voice in the CEHR's work.

We recognise the unique and important local racial equality work that has historically been supported by the CRE. The White Paper proposes a commitment to maintaining existing levels of support for local race work.

The White Paper also confirms that the Government will start detailed. preparatory work on the nature and shape of a new statutory duty on public bodies to promote gender equality in fulfilment of its longstanding commitment to introduce such a duty. This duty will oblige public bodies to ensure that their actions (either as employers or service providers) will promote equality of opportunity between women and men and make public services more responsive to their different needs. Part of the preparatory work will involve learning from the experiences of the public sector duty introduced for race through the Race Relations (Amendment) Act 2000, and will be informed by the proposed public sector duty for disability. The Government will consult interested stakeholders and parties as this work develops.

Establishing the CEHR will require primary legislation. We intend to bring a Bill before Parliament as soon as Parliamentary time allows. The Commission will not be fully operational before the end of 2006 at the earliest. A planning phase, beginning shortly, will become progressively more detailed over the next 12–18 months. Plans for bringing in the "new strands" of equality, religion and belief, sexual orientation and age, are outlined in the White Paper.

The Government look forward to consulting and debating on all these issues, and particularly welcomes views responding to the White Paper's questions on regional and local issues and how the body should work with stakeholders. We welcome the eleventh report of the Joint Committee on Human Rights on the structures, functions and powers of the new body, and will consider this further alongside responses to the consultation.