Within Staffordshire and Stoke on Trent
The relief of those persons receiving or who have received treatment for a neurological condition and their families and carers
To advance the education of the public in all matters concerning neurological conditions
What is The SNA
We are a Limited Company No7868094 and Charity Commission registration No11581
Who are the SNA
The SNA is led by people with neurological conditions with support from commissioners, clinicians, employees and volunteers from major condition specific charities. Anyone sharing our interests may join
Current membership includes representation from Headway, Stroke, Spinal Injuries, Epilepsy, Parkinson’s UK, MS, and MND organisations
Who Funds the SNA
Grants, donations and membership fees. Officers and members may claim expenses incurred in approved activities .There are no paid staff. We receive generous support from Netinspire who provide our website and bi monthly e letter and DPC accountants.
Who are the SNA associated with
We are partners with the Brain and Spine Foundation and recently affiliated to the Neurological Alliance.
Locally we are partners of the nascent South Staffordshire Neurological Clinical Network and supported a pilot set up by PARKINSONS UK MS and MND to create a network of neurological champions in the West Midlands
We are Organisational Neurological Champion for Staffordshire Healthwatch and cooperate with Stoke Healthwatch.
We are members of North Staffordshire Neurological Network and are contributing to planning for patient participation in creating the plan for Neurological conditions as a long term condition for Stafford and Cannock CCGs. We are working continuously to establish similar relationships in Seisdon and South Staffs CCGs and East Staffordshire CCG who have chosen to appoint Virgin Care as a prime Provider. We have agreed to support the West Midlands Strategic Clinical Network and Digital Management Staffordshire.
We have established effective relationships with the two Local Pharmacy Committees and with Keele University Medical School
We have established relationships with trusts, commissioners in councils and the NHS through regular participation in consultation and communication events
Our efforts have attracted support from County Council Cabinet members and MPs
The Alliance was formed in January 2001 from a working group set up by South Staffs PCT to produce a plan for service provision for people in the area with long term progressive neurological conditions
Two of our directors had previously been part of a group set up by 9 major neurological charities who had, with the University of York and Department of Health, developed a Quality Audit tool to measure performance against the National Service Framework. That tool was applied in South Staffs and separately in the North of the County showing great disparity in service provision
That plan was produced and accepted by South Staffs PCT in April 2010, shortly before it was announced that the PCT was to disappear.
The group was unwilling to leave an unfinished task.
Encouraged by the County Council Cabinet Member for Adult wellbeing the group expanded its remit to include Staffordshire and Stoke on Trent.
In addition to our website, 2 monthly e letter, Facebook and Twiitter pages we attend as many relevant consultation and communication events as we are able. We also seek opportunities to talk to condition specific support groups and branches
Less than 10%of those diagnosed join the excellent condition specific charities. Many have no internet access and a large number when diagnosed are given no assistance in finding sources of guidance, advice and service- all of which is available from statutory or voluntary sources
Fragmentation of service provision is a major obstacle to effective commissioning. Providers are often unaware of instances of Best Practice in neighbouring areas.
Costs can be reduced and patient’s lives improved by delaying or eliminating the need for expensive hospital or care home based intervention
Not by competing with providers or charities but by providing a signposting service enhanced by our Hard Copy Directory which we aim to place and maintain in pharmacies, libraries, health centres, GPsurgeries and supermarkets which most of our target population use.
By offering information and data to commissioners and providers through meetings and events to which we bring specialists and exemplars of Best Practice
Attempting to bring together decision makers to consider joint planning where feasible and have them regard us as a resource not a critic
Based on evidence, advocating a switch of resource from acute to community prevention and care, and that an integrated approach to neurological services is feasible if more difficult than Diabetes, COPD etc.
Patients can Self Manage given the right information, guidance and appropriate and timely access to resources. This is cost effective and efficient saving funds from reduced hospital admissions, both planned and unplanned.
When we started in 2011
The group produced a Strategic plan for treatment of progressive neurological conditions from diagnosis to end of life which was accepted and ratified by the South Staffs PCT.Board.
This was based largely on the results of applying the excellent Quality Audit tool which had been developed by 9 of the neurological charities in partnership with York University funded by the Department of Health. It produced evidence based assessments of performance against NSF Guidelines.
The core group developing the Strategic Plan included people from the private and public sector, including service users and carers, clinicians and commissioners and representatives from the voluntary sector. It delivered on time at minimal cost, by rapidly establishing and maintaining a culture of open communication, trust and mutual confidence.. Building upon this foundation the group proceeded to form the Alliance.
The Alliance has 4 objectives to be achieved within 2 years
- To be recognised as an unbiased, realistic, competent advocate by all affected by neurological conditions
- To be an effective partner in decision making with voluntary bodies, government at all levels and all sectors of the NHS and Social Care
- Establish effective links with all other RNA’s and the National body and be a partner in RNA policy making.
- Establish a robust permanent structure, with achievable goals and sustainable operating practices including communications, funding and governance. To this end to be a Limited Company and a registered charity within the first year.