It is estimated that as many as one million adults in Scotland are living with a wide range of complex and life-changing neurological conditions such as Parkinson’s disease, epilepsy, and Huntington’s disease as well, as those affected by cerebral palsy, brain injury, nerve and muscle disorders.
Neurological disease can be difficult to diagnose and can affect people in different ways. No two patients with neurological disease are the same. Many people living with a neurological condition self-manage their condition effectively day-to-day. There are some conditions for which no treatment is required and others for which increasingly effective treatments can be provided. Many people do require specialist input from a range of services, and unfortunately some conditions can progress and become life-limiting. Neurological conditions are a significant cause of morbidity and mortality in Scotland both in terms of acute presentations, but also because of the chronic and disabling nature of some of the symptoms and effects of the illnesses.
The effects of the increasing number of people living with neurological disease is ever more apparent. Timely and appropriate referral to a clinician with expertise in neurological conditions is essential. Neurological care should be accurate and person-centred and followed up by providing the person with suitable information, support and advice. People should expect to receive the same high quality service from the health and social care organisations that support them, regardless of their condition, geographical location or individual circumstances.
Healthcare Improvement Scotland (HIS) is a national health and social care improvement organisation for Scotland. In February this year, I was appointed chair of the group convened and led by HIS to develop General Standards for Neurological Care and Support. This group, comprised of a range of health and social care professionals that support people living with neurological conditions, and has been working together to develop standards that apply across both health and social care, and set out the priority areas for neurological services in Scotland.
Standards are hugely important in ensuring that everyone in Scotland receives high quality care and support that is right for them. They drive positive change by supporting organisations to assess the quality of their service while simultaneously supporting improvement in the service provided. All organisations responsible for the delivery of neurological services are expected to meet all the standards. Crucially, they also set out what to expect if you are a person receiving care.
The draft General Standards for Neurological Care and Support are now available for public consultation until 13 December. Effective management of a neurological condition requires teamwork and a multidisciplinary approach across all agencies as does developing a set of standards.
We are keen to consult widely and reach out to the neurology community to ensure all their various voices can be heard.
The team at Healthcare Improvement Scotland are taking part in a number of engagement sessions to publicise the consultation, the first of which is at the Scottish Stroke Nurse Forum annual conference taking place in Perth.
This is also the first of many engagement sessions with organisations across Scotland such as prisoner healthcare boards, the Scottish Association of Neurological Sciences and Sue Ryder Care, a charity which provides hospice and neurological care to people and their families.
I would encourage those involved in the planning of services, those that deliver them and particularly people living with a neurological condition, to respond to our consultation and shape the final publication.
Visit http://www.healthcareimprovementscotland.org/our_work/long_term_conditions/neurological_health_services/neurological_care_standards.aspx to view the consultation on the General Standards for Neurological Care and Support.
Dr Tracey Baird, consultant neurologist, NHS Greater Glasgow & Clyde and chair of Healthcare Improvement Scotland’s (HIS), General Standards for Neurological Care and Support development group