The Encephalitis Society
An outline and our response to the National Service Framework (NSF) for Long Term Conditions (LTC)

1. Introduction

The NSF was launched formally on 10 March 2005. The NSF is a Department of Health Document that consists of 11 Quality Requirements. The aim is to put individuals with long term conditions at the heart of health and social care and to provide services that are efficient, supportive, an appropriate at every stage throughout a person’s life. A specific focus of this NSF is people with neurological conditions.

The NSF is mandatory and those people providing services to people who have long-term conditions must consider and define strategies to comply with the 11 quality requirements.

NSFs should be regarded as part of all health and social care organisations developmental standards. The NHS and local authorities must demonstrate they are making progress in developing these NSF levels of service quality during 2005-08.

The aim is that all services providing health care to people with LTC are fully compliant by 2015.

In due course the Healthcare Commission and Commission for Social Care Inspection may undertake thematic reviews of progress.

The Encephalitis Society is welcoming and supportive of the NSF, and is grateful to the Government for recognising at last, the inconsistent, scattered and in some cases poor services received by people affected by Encephalitis and other neurological conditions across the UK.

We hope that the NSF will drive forward consistent, quality services, available to everyone who has been affected by neurological illness or injury at the time that they need them, for as long as they need them.

The Encephalitis Society appeals to the government and those providers responsible for the implementation of the NSF to take account of the following:

• Be mindful of the training needs required within the sector in order to ensure its successful delivery and maintenance.
  
  
• Support and Direction is required by those responsible for its implementation.
  
  
• Effective monitoring and targets are required to ensure the NSF is not only delivered within the 10 years but that those services are of an acceptable quality.
  
  
• The dearth of neurologists, neuropsychologist and neuropsychiatrists in the UK must be addressed at a strategic level.
  
  
• Extra funding must be delivered to services to enable them to meet the NSF’s guidelines.
  

• The need to ensure that the impetus of this NSF remains a priority and that 3 general elections over the next 10 years do not detract from its importance and implementation.
  
  
• The need for joined up communication, policies and working between health and social services, along with clear lines of responsibility, whilst also addressing the practical and cultural change required to be successful.

2. Long Term Neurological Conditions

Long-term neurological conditions consist of disease, injury or damage to the body’s nervous system (i.e. the brain, spinal cord and/or the peripheral nervous system).

The broad categories are -

• Sudden On-Set Conditions
  E.g. Acquired Brain Injury or Spinal Cord Injury
  
  
• Intermittent & Unpredictable Conditions
  E.g. Epilepsy, Multiple Sclerosis
  
  
• • Progressive Conditions
  E.g. Motor Neurone or Parkinson’s Disease
  
  
• • Stable Neurological Conditions, with Changing Needs
  E.g. Post-polio syndrome, cerebral palsy in adults
  
  

3. Quality Requirements (QR)

QR1: Person Centred Service

Aim: To support people in managing their own condition, maintaining independence and achieving the best quality of life; through education, information, assessment, care planning and service delivery.

Quality Requirement: People with long-term neurological conditions are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves.

QR2: Early Recognition, Prompt Diagnosis & Treatment

Aim: To ensure people presenting with neurological symptoms or a neurological condition receive the correct diagnosis and appropriate treatment as soon as possible.

Quality Requirement: People suspected of having a neurological condition are to have prompt access to specialist neurological expertise for an accurate diagnosis and treatment as close to home as possible.

QR3: Emergency and Acute Management

Aim: To improve the treatment of people who develop a neurosurgical or neurological emergency, preventing avoidable illness and death.

Quality Requirement: People needing hospital admission for neurosurgical or neurological emergency are to be assessed and treated in a timely manner by teams with appropriate neurological and resuscitation skills and facilities.

QR4: Early and Specialist Rehabilitation

Aim: To ensure that people who develop a neurological condition achieve the best possible recovery and rehabilitation.

Quality Requirement: People with long-term neurological conditions who would benefit from rehabilitation are to receive timely, ongoing, high quality rehabilitation services in hospital or other specialist setting to meet their continuing and changing needs. When ready, they are to receive the help they need to return home for ongoing community rehabilitation and support.

QR5: Community Rehabilitation and Support

Aim: To enable and support people with long-term neurological conditions to lead a full life in the community.

Quality Requirement: People with long-term neurological conditions living at home are to have ongoing access to a comprehensive range of rehabilitation, advice and support to meet their continuing and changing needs, increase their independence and autonomy and help them live as they wish.

QR6: Vocational Rehabilitation

Aim: To enable people with a long-term neurological condition to work or engage in alternative occupation.

Quality Requirement: People with long-term neurological conditions are to have access to appropriate vocational assessment, rehabilitation and ongoing support to enable them to find, regain or remain in work and access other occupational and educational opportunities.

QR7: Providing Equipment & Accommodation

Aim: To enable people with long-term neurological conditions with appropriate equipment and adaptations to their accommodation to give them greater independence and choice about where and how they live.

Quality Requirement: People with long-term neurological conditions are to receive timely, appropriate assistive technology/equipment and adaptations to accommodation to support them to live independently; help them with their care; maintain their health and improve their quality of life.

QR8: Providing Personal Care & Support

Aim: To ensure that people with long-term neurological conditions are able to choose where and how they live.

Quality Requirement: Health and social care services work together to provide care and support to enable people with long-term neurological conditions to achieve maximum choice about living independently at home.

QR9: Palliative Care

Aim: To provide people in the advance stages of long-term neurological conditions with high quality palliative care services.

Quality Requirement: People in the later stages of long-term neurological conditions are to receive a comprehensive range of palliative care services when they need them to control symptoms; offer pain relief and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care.

QR10: Supporting Family & Carers

Aim: To provide support and services to carers of people with long-term neurological conditions, which recognise their needs both in their role as carers and in their own right.

Quality Requirement: Carers of people with long-term neurological conditions are to have access to appropriate support and services that recognise their needs both in their role as carer and in their own right.

QR11: Caring for People with Neurological Conditions in Hospital or Other Health & Social Care Settings

Aim: To provide people with appropriate neurological care at all times while they are having treatment or care in any health or social care setting.

Quality Requirement: People with long-term neurological conditions are to have their specific neurological needs met while receiving care for other reasons in any health or social care setting.

4. How the Encephalitis Society can Help YOU deliver the NSF

Our Society has a wealth of information and expertise in the disease itself, knowing about the needs of those affected and how best to support them, their families and their carers.

We can:

• Provide you with Information on the disease, its consequences and rehabilitation. This may help inform not only your clinical staff but also enable people affected to make informed decisions about their care and rehabilitation. This information can be provided in a number of formats.
  
  
• Provide direction and access to the latest and most up-to-date research into Encephalitis. An Expert Professional Medical Panel supports the Encephalitis Society.
  
  
• Provide details of a range of available rehabilitation and other supportive health, social care and education services and professionals across the United Kingdom and Ireland.
  
  
• Provide seminars and can provide bespoke training to health, social care and education professionals or employers on a range of aspects of Encephalitis, its consequences and rehabilitation and the needs of those directly affected.
  
  
• Provide opportunities for consultation with people affected by Encephalitis, their families and carers.
  
  
• Provide ongoing information, advice and support and signposting to other organisations, to people affected and their families (Note: this is in addition to, and not in place of statutory services).

5. Further Information:

Full Text of the NSF, together with a Patient Leaflet and other resources can be found at www.dh.gov.uk/longtermnsf

Hard Copies may be available from the Department of Health Publications Line, and are available in Braille, on audiocassettes, on disc and in large print.
Contact:
DH Publications Orderline
P O Box 777
LONDON SE1 6XH

Tel: 08701 555455
Email: dh@prolog.uk.com

Last modified 14 January 2008