Quality requirement 1: A person-centred service

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.

Examples of good practice from the Action on Neurology pilots.

The team operates a self-referral system and has a ‘standby pathway’ for people with deteriorating conditions. This enables individuals to initiate a review prompted by a checklist of significant changes or new symptoms.

The EIN was established to meet the information needs of people with epilepsy and their carers. It has developed a variety of training packages for volunteers to enable them to provide verbal information about epilepsy in both healthcare settings and in the community. The packages could be adapted for other long-term conditions.

At this Centre, people can take away a summary of their initial or follow-up assessments and action plan. This means that a record of their visit to the multidisciplinary MND clinic is available when health and social care professionals visit them at home.

The Motor Neurone Disease (MND) Association funds a network of twelve MND Care Centres based in regional neuroscience centres. They deliver high quality coordinated assessment and management of care to all people with confirmed or suspected MND in line with the Association’s Standards of Care. The individual centres have developed a number of resources and different ways of working which they are willing to share including fast-track diagnostic clinics, nurse-led clinics, taped consultations, development of advance directives and preferred place of care for specific use in MND, MND care pathways and review processes, carers’ information days, links with local ambulance services, use of volunteers in clinics, and education for staff in primary and secondary care.

The service provides a link between primary and secondary care and offers easy access to services through a single point of contact. Care is co-ordinated and this ensures appropriate intervention is made where necessary. The service also offers a Wellness Programme for people newly diagnosed with multiple sclerosis.

The team is jointly funded by health, social care and the voluntary sector. All new clients receive a single core assessment on referral and the care plan is drawn up with the client.

The service provides a range of services, including a self management styled education and support programme. People with Parkinson’s disease and their carers or guests attend an eight week course and group members decide on the topics they wish to cover before the course begins.

The Centre has been awarded ‘Health Improvement Partnership’ funding for a project focused on joint working between health and social services. The project objectives include the design, implementation and evaluation of a model of case management for identified individuals with long-term conditions, and the facilitation of change in current professional practice across health and social services.

The Neurological Alliance produces an information booklet for people with long-term neurological conditions called ‘Getting the Best out of Neurological Services’. It contains useful information about the services that are available and how to access them.

• Neurological Alliance website (opens new window)