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New NSF with real input from care organisers and service users
New standards of care for the millions of people living with a neurological condition are well on the way to completion according to a paper published by the External Reference Group (ERG) for the National Service Framework (NSF) for long term conditions.
In what forms part of the widest rolling consultation of any NSF, the ERG has issued a paper containing vital questions about the proposed areas to be covered by the standards. The standards aim to radically improve the quality of life of people living with motor neurone disease, Parkinson's disease, acquired brain injury, spinal injury, epilepsy and multiple sclerosis.
ERG chair and former chief executive of Carers UK, Diana Whitworth says: "Neurological conditions affect a substantial proportion of the population. They account for 20 per cent of acute admissions, and are the third most common condition seen by GPs. Getting this NSF right should make a difference to many people's quality of life."
The paper has been sent to service users and organisations including the Longterm Medical Care Alliance, Neurological Alliance and professional groupings (such as the Association of British Neurologists). Responses to the fifteen questions posed are due back by the end of November and include:
- "What is the key change needed to ensure that the needs of those with rapidly progressing conditions are anticipated and met?
- How can carers and family members be supported in caring for people with neurological conditions or brain or spinal injury?
- What are the most effective ways of delivering information to people?
Each question asks for evidence of good practice. Diana Whitworth says: "If the NSF is to be a powerful tool for change we need evidence of what is working well. We are especially interested in hearing about good practice which addresses the needs of those who may be currently excluded from services - for example, people with cognitive impairment from brain injury, people from black and minority ethnic communities, disabled people and people living in remote rural areas."
The standards' proposed areas cover:
- Access to the full range of health and social care services
- Neurological patients to see a specialist and get the right investigations, diagnoses and treatment as quickly as possible
- Access and reaccess to local rehab services to promote full participation in leisure, work and social life
- Access to assistive technology and wheelchairs
- Access to supported living, residential, respite and palliative care services
- Good quality information and support, including for carers and families
- Patients to be enabled to take an active role in managing their condition
Commenting on progress, Diana Whitworth adds: "Thanks to the commitment of the ERG and working group members, we are making excellent progress and are well on track for delivering final recommendations to ministers next spring. It is, however, imperative that we gather as much information as possible about innovation and excellence to underpin our recommendations." Responses to the question paper will form part of the final recommendations. The NSF will also give a steer towards improving services for other long term conditions.
About the ERG
The External Reference Group (ERG) is responsible for advising ministers on the NSF. It has met quarterly since December '03 researching the issues which need to be addressed to improve the quality of life for the millions of people living with neurological and other long-term conditions
ERG milestones
- Febrary2001: NSF announced by secretary of state for health
- October 2002: Chair and deputy chair announced
- November 2002: Membership
announced by health minister, Jacqui Smith
Scoping workshop held to identify top ten issues - December 2002: First meeting set up
- November 2003: First draft NSF papers due
- Spring 2004: Advice to be given to ministers
- By end 2004: Final draft NSF due
October 2003
