A new research Fellowship into improving care standards for people living with Huntington’s disease has been launched.
The £210K study is being backed by the Scottish Huntington’s Association and funded by the Scottish Government’s chief scientist’s office and the RS McDonald Trust.
The post has been awarded to Ms Daniela Rae who will be working with the University of Aberdeen Health Services Research Unit who have a strong track record in HD research.
Daniela will be carrying out in-depth studies at three services supporting people living with HD and interviewing some 45-50 patients, carers, health and social care professionals and managers to understand what health and social care are most important in helping people with HD achieve the best outcomes.
“This fellowship presents an exciting opportunity to learn, understand and in future influence how services in HD are organised and how agencies work together to deliver high quality care. Most importantly patients will be key in shaping a main set of measures that are envisaged to become core in evaluating such services, and matter to them,” said Daniela.
The fellowship was announced as the SHA met Minister for Sport Health Improvement and Mental Health, Jamie Hepburn.
The charity are pressing the government to introduce a national action plan to improve HD care standards across the country.
“I’m delighted to hear of Daniela’s appointment this three year study will have a huge impact on scoping out how we can improve standards of care for people living with HD,” said SHA chief executive John Eden.
HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is no cure.
It is estimated that there are around 1100 people living with the condition in the country with another 5000 potentially at risk.
Dr Patricia Donald from the RS MacDonald Trust added:
“I am delighted that we are supporting this Fellowship in partnership with the Chief Scientist’s Office and the Scottish Huntington’s Association. The research into person centred care for Huntington’s disease will help to create a quality framework for redesign of services which will also support patients with other neurodegenerative diseases.”