Do you want to be part of a Neurological Alliance for Somerset?
Calling patients and carers with an interest in neurological conditions in Somerset!
The Somerset LINk, Headway, and Parkinson's UK are helping support the set up of a new local alliance of patients and carers in Somerset. You can read all about it here!
Terms of Reference for the Somerset Neurological Alliance
At our meeting on 30th January 2012, we drafted some Terms of Reference, which are as follows:
Aim:
To champion the needs of people with neurological conditions and their families and carers living in Somerset.
Objectives
- To enable the health and social care needs of people with long term neurological conditions and their families/carers living in Somerset to be clearly identified.
- To provide a voice for people affected by neurological conditions in Somerset.
- To provide a key point of patient/user/carer contact for health and social care agencies in Somerset on generic neurological issues.
- To engage with health and social care commissioners and support services to ensure that service commissioning is based on the needs and experience of people with neurological conditions and their families/carers.
- To monitor the delivery and quality of services, feeding back to service commissioners and providers.
- To lobby and campaign for improved health, social care and support services, working in collaboration with other organisations with common objectives.
Governance:
In the short/medium term, to function as a Sub-Group of the Somerset Local Involvement Network (LINk). In the medium/long term, to function as a stand alone membership based voluntary organisation affiliated to the national Neurological Alliance.
Minutes from past meetings of the Somerset Neurological Alliance
What is a Regional Neurological Alliance?
Local Neurological Alliances exist around the country to enable people with long term neurological conditions and their families/carers to come together to speak with one voice on their common health and social care needs, lobbying and monitoring local health and care services and where needed, campaigning to retain or improve local services.
Most local Neurological Alliances are affiliated to the national Neurological Alliance, which is a membership network of national charities concerned with long term neurological conditions – MS, epilepsy, stroke, acquired brain injury, Parkinson’s, motor neurone disease, Huntington’s, myasthenia gravis, muscular dystrophy etc.
Within the south west, three local Neurological Alliances already exist in Cornwall, Swindon and Wiltshire and Gloucestershire.
A local Neurological Alliance does not take the place of existing groups or communication arrangements with health and social care which are already in place. It serves to focus on those needs and services which are common to all people with long term neurological conditions and their families/carers, complementing those areas where a focus on a specific condition is required.
What is a neurological condition?
Neurological conditions result from damage to the brain, spinal column or nerves, caused by illness or injury.
- Multiple sclerosis
- Motor Neurone Disease
- Progressive Supra-nuclear palsy
- Parkinson's Disease
- Traumatic brain injury leading to long-term problems
- Cerebral palsy
- Charcot-Marie-Tooth disorder
- Dystonia
- Early-onset dementia
- Epilepsy
- Essential tremor
- Huntingdon's disease
- Migraine
- Muscular dystrophy
- Post-polio syndrome
- Spinal cord injury
- Spina bifida and congenital hydrocephalus
- Young onset stroke
For more information
For more information or to be kept up-to-date with developments of the Somerset Neurological Alliance, contact Lucy at the Somerset LINk Office:
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Email:
lucy.nicholls@helpandcare.org.uk
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Post: Lucy Nicholls, FREEPOST RSAC-KSRE-CZCE (no stamp required), Somerset LINk 2, Bowden's Business Park, Hambridge, Somerset. TA10 0BP
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Telephone:01458 250674
To find out more about the work of the South West Alliance of Neurological Organisations, you can visit their website at www.swano.org.