Information is important for PCTs, NHS Trusts and other health and social care organisations

Information is a priority. Improving the information provided to people with long-term neurological conditions can help NHS and social care organisations to improve their overall service, meet Government targets and comply with the requirements of inspections.

Following the publication of the 2005 national patient survey results the Chief Executive of the Healthcare Commission said “patients are still sending a clear message that there is more work to do. Providing patients with the right information, in the right format and at the right time is crucial to their treatment and recovery, yet so many tell us that they are not receiving this”.

Availability and provision of information is highlighted as a priority in the Health and Social Care Standards and Planning Framework for 2005/6 — 2007/8 (Domain 4 — Patient Focus):

CI 6 Healthcare organisations make information available to patients and the public on their services, provide patients with suitable and accessible information on the care and treatment they receive and, where appropriate, inform patients on what to expect during treatment, care and aftercare.

D9 Patients, service users and, where appropriate, carers receive timely and suitable information, when they need and want it, on treatment, care, services, prevention and health promotion and are:

a)encouraged to express their preferences

b)supported to make choices and shared decisions about their own healthcare.

These standards now form part of the Standards for Better Health which the Healthcare Commission uses to assess NHS organisations as part of the Annual Health Check.

A national target has also been set (Priority IV, Patient/User Experience):

“Secure sustained national improvements in NHS patient experience by 2008, ensuring that individuals are fully involved in decisions about their healthcare, including choice of provider, as measured by independently validated surveys. The experiences of black and minority ethnic groups will be specifically monitored as part of these surveys”.

The White Paper Our health, our care, our say: a new direction for community services (January 2006) says that by 2008 “we would expect everyone with a long-term condition and / or long term need for support - and their carers — to routinely receive information about their condition and, where they can, to receive peer and other self care support through networks”. It also proposes that by 2008 services give all people with long-term health and social care needs, and their carers, an ‘information prescription’ to signpost people to further information and advice to help them take care of their own condition.

The Government’s “Better information, better choice, better health” strategy states that people should:

  • have access to accurate, high quality, comprehensive information delivered in the way they want;
  • have their personal information needs considered and discussed at every contact with healthcare professionals;
  • receive as much support as they want to access and understand information;
  • be empowered to ask questions and be involved as far as they want in making decisions about, for example, the benefits and risks of action, and how any risks can be mitigated.

Improving information helps to meet service-wide priorities by:

  • Improving patients’ experience — empowering people to take a more active role in their healthcare with information and services tailored to their needs.
  • Reforming emergency care — through increased awareness and appropriate use of walk-in centres, minor injury clinics and NHS Direct, for example.
  • Improving primary care — strengthening the relationship between patient and health professionals and fostering appropriate self-care and family involvement.
  • Making better use of waiting times — for increasing knowledge about a condition and improving fitness for treatment, co-operation and self-care.
  • Encouraging greater self-care — helps people make the best use of health and social care services, thereby reducing inappropriate pressures on areas of the healthcare system.
  • Delivering policy in the Choosing Health White Paper — by giving people the information they need to maintain and improve their health.
  • Supporting choice of hospital — increases awareness and access to available hospital choices and drives up standards.
  • Helping people manage their long term conditions — by providing information to people to support decision-making on their care management.

The Clinical Negligence Scheme for Trusts (CNST) Standards summary requires:

1.4.2 The organisation has approved a document on the development of patient information to manage the risks associated with patients not receiving adequate information to make an informed choice about their proposed care and treatment.

In the social care Green Paper, Independence, Well-being and Choice, the Government states that it would like Councils to explore how they can provide better information that is easy to understand and is available in minority languages and a variety of formats. Information should also be developed which is sensitive to language and cultural needs.

The Long-term (Neurological) Conditions NSF
 The Long-term (Neurological) Conditions NSF sets out the following evidence-based markers of good practice for information provision for people affected by neurological conditions:

Arrangements are in place to ensure that:

  • All people with long-term neurological conditions have a named point of contact for advice and information.

Local arrangements for providing information ensure that:

  • People receive timely, quality assured, culturally appropriate information in a range of formats on:

    - All relevant aspects of service provision

    - The condition and how best to manage it

    - Wider social inclusion issues (e.g. employment and transport)
  • Health and social care professionals, people with long-term neurological conditions and carers receive appropriate training on effective ways to provide and use information. Assessment of information needs is part of review and any interaction with health and social services.

    (Progress on these markers of good practice can be assessed by using the self assessment tool at the National Service Framework for long term conditions. This toolkit is structured so that it mirrors the relevant questions in the CSIP self assessment tool and supports health and social care professionals and PCTs in meeting these requirements).

Improving the provision of information to people affected by neurological conditions will also contribute to the implementation of various NICE Guidelines. There are guidelines for a number of neurological conditions:

Epilepsy
Multiple Sclerosis
Head Injury
Parkinson’s Disease

There are also NICE Guidelinesin development on Improving outcomes for Brain and other CNS Tumours, Chronic Fatigue Syndrome / ME and Stroke.

Promoting patient self care and self management is identified by the NHS Institute for Innovation and Improvement as one of the nine “high impact” changes that general practices can make to maximise their effectiveness.

This good practice guide recommends that general practices signpost patients to available external support for self care and ensures that the practice maintains a list of local community contacts and support networks. It also suggests that practices review, with patients, the adequacy of information provided for patients and carers. ( High impact changes for practice teams, NHS Institute for Innovation and Improvement and Improvement Foundation, 2006)