One of the strengths of the Neurological Alliance is that we are able to make connections across issues in relation to specific disease areas. We then facilitate member organisations to come together to address shared issues and achieve change.
At present there are three areas we have a particular focus on: mental health, rare disease, and neurodevelopmental conditions. In order to explore issues in greater detail than is possible at our main policy group meetings, we have set up three policy subgroups.
Possible future sub-group topics may include:
- influencing place based commissioning plans,
- access to therapy and rehabilitation services,
- care planning and communication,
- social care, and
- research into conditions where there are no current treatments.
If you are a member organisation and are interested in joining one of these, please get in touch.
Mental health, cognitive and emotional needs
Co-morbid mental health, cognitive and emotional needs are more common in people with neurological conditions than in the overall long term conditions population. Yet, our research shows that people with these needs are currently underserved, and often lack access to appropriate services.
Following the publication of our Parity of Esteem report in 2017, our mental health sub-group is following up the recommendations made in the report. We are also in the process of developing the group to undertake work under the auspices of the National Neuro Advisory Group. The NNAG is developing a workstream on mental health, after this was flagged up as a need by patient organisations.
People with rare diseases are often underserved by the NHS: recognition of symptoms is often poor even by specialist health care professions, and the systems in place for assessing new medicines are poorly suited to medicines for rare diseases. We believe that patients with rare neurological diseases should not have a different experience of care or be denied access to treatments simply because their condition happens to be rare.
Our rare disease subgroup provides a forum for members from rare disease charities to come together to share intelligence and explore issues of mutual interest. The group has taken the opportunity to feed in responses to some of the work being undertaken by the Specialised Healthcare Alliance, of which the Alliance is a member. It also works closely with the Genetic Alliance.
We have worked jointly with our member charity Autistica to establish a neurodevelopmental charities coalition. The coalition has over 20 members, and is exploring areas of cross-over between organisations supporting people across the neurodiverse community. The coalition wants to understand what can be done to ensure better support for people affected by different neurodevelopmental conditions and their families, and to positively influence provision.
A survey of over 800 people with neurodevelopmental conditions has been completed. The aim of the survey is to understand the reality of life with a neurodevelopmental condition. The goal is to understand what support and services are making a difference and where there are gaps in the help neurodiverse people need. The coalition will use the responses gathered to make the case to politicians and policymakers for more and better services for people with neurodevelopmental conditions.
Regional Neurological Alliance meetings
We hold regular meetings with our colleagues across England in the regional Neurological Alliances. In 2020 we established the practice of holding these meetings online so that regional groups can share intelligence and their experiences of working locally. The meetings are open to any regional group member of The Neurological Alliance.