In November 2016, NPC chaired a roundtable discussion on our recent report Neurological conditions in Scotland: A guide for funders, commissioned by RS Macdonald Charitable Trust. The roundtable brought together charities and funders who had contributed to the research and other experts in the field. Discussions revolved around the report’s key findings: the current trends, priority needs, solutions and interventions, and recommendations for the sector’s response. Much of the ensuing debate revolved around two key areas: information provision for people with neurological conditions, and the potential for organisations to collaborate to provide generic services.
Everyone agreed that information at the point of diagnosis is crucial for people with neurological conditions and their carers. One roundtable attendee spoke of instances where a GP has handed a post-it note reading ‘Cerebral Palsy’ to the child’s parents, advising them to Google the condition to find out more. For people with neurological conditions and their families, there is a vital need for better information and guidance about their condition and how to access the services they need. For older people, this can mean an understanding of how their condition might interact with other co-morbidities associated with ageing, which will help them stay healthy for longer. Meanwhile, when children are diagnosed with a neurological condition, parents often want to understand how their condition might affect their development and their school life.
However, as one attendee put it, ‘there is also a danger of too much negative information.’ The NHS will often provide a recently diagnosed patient with a long list of potential things the individual may (or may not) experience. Attendees discussed the destructive impact of announcing to a parent-to-be during a pre-natal appointment that their child has a condition such as Downs syndrome, by using the words, ‘I am sorry to tell you that…’ Using deficit-based language can create a debilitating sense of fear for the newly diagnosed and their families, which does not accurately reflect the experience of many with neurological conditions. Emotional support at the point of diagnosis can support people to cope with the information provided to them at this uncertain time.
The voluntary sector has a strong case to make to the NHS that its person-centred approaches make a difference to those with neurological conditions. One attendee described how charities can help to create ‘a flexible system allowing people to engage at their own pace.’ But some roundtable attendees had encountered ‘suspicious attitudes’ within the NHS towards the voluntary sector. Charities are sometimes viewed as inefficient and unprofessional, rather than being a partner to ‘share the burden’ of service provision.
Collaboration between charities to provide services across conditions is one way for the sector to more effectively meet people’s needs. For instance, this could entail collaborating with expert financial or emotional support services to provide services that cut across multiple conditions, rather than duplicating effort in many condition-specific charities. Not all charities present were entirely convinced of the benefit to working with services that are specific to a need, such as welfare advice. One commented that they had previously attempted to work with Citizens Advice services but found that it was more effective and cost efficient for them to train their own, in-house specialist adviser. Though there are significant challenges involved, partnering to provide services across different conditions has great potential to provide more and better support to people with neurological conditions.
It is clear to us at NPC that the role of an effective funder goes far beyond financial support. One attendee commented that the roundtable has ‘brought the paper alive’ and is a starting point for many meaningful conversations. Convening these sector discussions is a huge added value to charities who support those with neurological conditions and their carers, and shape the system that operates around them.
Grace Wyld, NPC—Grace works in the Research & consulting team at NPC, helping charities and funders improve, measure and communicate their impact.