About 1 in 6 of us has a neurological condition that has a significant impact on our lives. And people with neurological conditions need an effective National Care Service.
As a rule, if your condition involves the brain or nervous system, things can be difficult. You might have physical and sensory impairments, communication issues or severe pain. Seizures, problems with thinking, mental ill health and fatigue are also common. Some neurological conditions are terminal, many progressive or lifelong. And for too many people, treatments are limited.
If you have a neurological condition, you’re more likely to need care support, aids or equipment for everyday tasks. You’ll probably need a relationship with your GP and access to community-based health professionals too.
So it’s really important that the new National Care Service works for people with neurological conditions and their families. The current system is a mess, with individuals and families often picking up the pieces when the support available doesn’t meet their needs.
Neurological charities in Scotland know that change is needed. But we are concerned about the Scottish Government’s proposals. The proposed National Care Service (Scotland) Bill claims to be big on ideas – but it’s worryingly short on details of how the National Care Service will work. Essentially it is a vision without a blueprint, a schedule, or a budget. And we don’t think that is enough.
We’re told that Scottish Government will co-design the new system with service users and staff. Whatever emerges from this process will be implemented via regulations, and it will all be fine.
At the Neurological Alliance of Scotland, our members work alongside people living with neurological conditions all the time. Planning and delivering services and activities in partnership with our communities is fundamental to how we work. But we also require transparency and accountability.
The Neurological Alliance of Scotland has over 50 member charities. We welcome many of the Bill’s principles around human rights, service user involvement and ethical commissioning. But there is a disconnect between these potentially powerful ideas, and the Bill’s failure to state how they will be enacted and reinforced in the operation of the National Care Service.
The Bill proclaims the importance of co-design, while specifying that Health and Social Care Board must only undertake minimal levels of public consultation for their local strategies. Ethical commissioning and co-design are highlighted – but on further examination will be subordinate to budget constraints. And the obvious lack of financial and human resources in the current system remains unaddressed. Unsurprisingly, neurological charities are asking how meaningful those commitments will really be.
The National Care Service’s remit is complex, and stakeholders have wide – and sometimes competing – interests. It’s essential that MSPs and those involved in the system have the opportunity to scrutinise the proposals in full – examining them for unintended consequences and assessing whether all stakeholders have been heard.
We believe that people in Scotland need a level of certainty about the care and support that will be provided and how to access it. All of this is missing. We believe that the Scottish Government must co-design first, and legislate later.
If the Bill goes through as drafted, the current Government – and any future administration – will be able to change almost everything by introducing regulations. Debate and scrutiny of these is minimal – Parliament accepts or rejects proposals in full, without amendment.
The missing issues are fundamental. They include how services are funded and commissioned, staffing issues, and the number, composition and scope of the bodies responsible for making sure that services are delivered. The draft legislation is silent on the practical details that matter to people. If Ministers are to be accountable for delivery, then Parliament and other scrutiny bodies must be able to judge them against specifics.
Scotland is being offered a new structure for care – but without blueprints, a schedule or a budget. We can’t tell if it will even stand up, much less that it will meet the care needs of people in Scotland. Ministers need to go back to the drawing board and show us all the plans that they have developed with people before they ask MSPs to legislate.
Tanith Muller is Chair of the Neurological Alliance of Scotland