The Guiding Principles of the National Care Framework seek to ensure that everyone supporting the person with Huntington’s disease (HD) sees the individual and not the illness, and understands that no two people are alike or are affected by the condition in the same way. The Guiding Principles encourage everyone to recognise that – arguably more than for any other condition – HD has a complex and interconnected impact on families, especially carers and young people. They call on people to take on board decades of evidence showing that HD care must embrace the profound physical, psychological and social impact of the condition – and that none of these issues can be considered in isolation if care is to be successful. They seek to highlight that people living with HD often face complex challenges that require imagination, commitment and perseverance – meaning that care must be both flexible and genuinely tailored to the individual in order to succeed. These approaches must flow through the HD journey, from its very beginning all the way through to the later stages of life. A palliative care approach should be followed, which should not be seen as marking the end of life but instead a longstanding form of care for a person with an incurable condition with greater focus on alleviating symptoms.
These Guiding Principles – combined with a Human Rights Based Approach – seek to make clear the manner in which this Framework should be used, and infuse it with passion and commitment. We believe that, together, they can make a genuine and significant difference to the lives of families affected by HD throughout Scotland over the years ahead.
The Guiding Principles are as follows:
Person Centred Approach (PCA)
An approach to providing health and social care which puts an emphasis on understanding the world from each individual’s perspective.
The Person Centred Approach makes the quality of the relationship between the individual and those providing support central to the process. Understanding the emotional life of each individual is important to ensure that care can be tailored accordingly.
In HD this also includes understanding the unique ways that HD changes how someone might think or behave and adapting care around the person to take account of this.
A Family Systems Approach (FSA)
An approach ensuring that the needs of the whole family are taken into consideration.
The Family Systems Approach promotes an understanding that the impact of HD affects not individuals but entire families.
A Biopsychosocial Model of Health & Disability
An approach that ensures that – as well as understanding the health impact of HD – health and social care staff also consider the social and psychological impact of the disease for each person.
This approach fits closely with the person centred approach.
A way of thinking about delivering services that tries to design them to suit each individual rather than people fitting into predefined service ‘boxes’.
Palliative Care Approach
The active total care of clients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best quality of life for clients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with treatment.
The National Care Framework for HD has been drafted to align with relevant legislation and key Scottish Government & NHS Scotland strategies, including:
National Health & Social Care Standards ; Integration of Health & Social Care ; Neurological Health Service Clinical Standards ; A National Clinical Strategy for Scotland ; Realistic Medicine Delivering Quality in Primary Care National Action Plan ; Healthcare Quality Strategy for Scotland ; 6 Essential Actions to Improving Unscheduled Care ; Improving the Health & Wellbeing of People with Long Term Conditions in Scotland: A National Action PlanNHS Health Scotland: Inequalities & Health Inequalities ; Caring Together: The Carers Strategy for ScotlandPersonalisation: A Shared Understanding ; Living and Dying Well: A National Action Plan for Palliative and End of Life Care in Scotland ; Delivering for Remote & Rural Healthcare ; Equally Well: Report of the Ministerial Taskforce on Health Inequalities ; A Route Map to the 2020 Vision for Health & Social Care ; Equality Act 2010 ; Human Rights Act 1998