Neurological care plan not a one size fits all – Pamela Mackenzie

Pamela Mackenzie, Director of Scotland and Neurological Services, Sue Ryder
Pamela Mackenzie, Director of Scotland and Neurological Services, Sue Ryder
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Now that we are in the waiting period between the end of the consultation and the final version being launched, it’s important no-one loses sight of the goal for Scotland’s first ever national action plan on neurological care: everyone with a neurological condition should be able to live their lives as fully as possible.

Organisations such as Sue Ryder, who are at the coalface delivering support and care for those with neurological conditions, have been working for well over a year to shape the plan. Yet there has been an awful lot going on in the world of politics and, with everyone’s eyes on Brexit, not much else has been getting a look-in.

However, the wheels of government are still turning and while the launch of a national action plan on neurological conditions is never going to make the front page in the current climate, it represents a big step forward for everyone affected by life-changing conditions such as multiple sclerosis, Huntington’s disease or acquired brain injury in Scotland.

Originally promised by the First Minister in response to our Rewrite the Future report in 2017 – which revealed only five of Scotland’s 14 health boards had any kind of plan for neurological services – the Scottish Government took a collaborative approach and worked with charities like ours, people living with neurological conditions, their carers and clinicians to develop the new national action plan.

We’ve been working closely with everyone involved to ensure that the new national action plan reflected all the needs of people with neurological conditions, and included all of the different types of service and support that people with these conditions – and their carers – may need.

With a vision that states “Everyone with a neurological condition will be able to access the care and support they need to live well, on their own terms”, it’s clear that the Scottish Government has listened.

As a result, the plan is holistic and represents a shift away from a hospital-based approach and towards a person-centred one. Indeed, the very first commitment the plan makes is to support “shared decision-making and personalised models of care and support for people with neurological conditions and their carers, including self-management support where appropriate”.

Roughly translated, this means everyone should get to decide what kind of care and support they want and relatively low-level support such as self-management – where people are supported to look after their own health and take control of managing their condition – should become the norm, rather than people having to wait until things get really bad before they can access the care they need.

However we all know that what is written down on paper is not necessarily translated into reality. We’ve seen the best of intentions fall by the wayside before – take the neurological clinical standards in Scotland, for example, which after an initial positive reception were largely ignored by health boards and have now been revamped and refocused and are due to be launched later this week (28 March). Experiences like this only go to demonstrate how important leadership is along with governance and accountability – and of course the necessary resources being made available. This is something we stressed to the Minister for Public Health Joe FitzPatrick when he recently visited Sue Ryder’s specialist neurological care centre, Dee View Court in Aberdeen.

Initial signs are encouraging but if the plan is to result in the transformative change it aspires to, the onus will be on all of us – nationally, regionally, locally, and across the entire health and social care sector – to work together to realise this ambition.

Pamela Mackenzie, Director of Scotland and Neurological Services, Sue Ryder