The Movement Disorders Health Integration Team (HIT) is a team of clinical staff, scientists, charity and industry representatives, and patients. They are working together to improve treatment and support for people with Parkinson's and other movement disorders in the Bristol area and further afield, as their work aims to have international impact.
Their main objective is to evolve, over the next 10 years, a high quality, high impact, internationally-recognised system for Parkinson's and other movement disorders. This will incorporate and integrate all aspects of clinical and social care, translational research and competency based education, supported by first class management and commissioning.
Parkinson's is a relentlessly progressive neurodegenerative condition, affecting approximately 1,780 people in the Bristol, North Somerset and South Gloucestershire (BNSSG) region. Parkinson's becomes increasingly common with age, but one in five patients present before the age of 50. The disease course is long, averaging more than 20 years, and patients experience an ever more complex and broad array of movement, autonomic, sleep, psychiatric and cognitive symptoms.
Managed poorly and in an uncoordinated way, patients experience unnecessarily heightened levels of morbidity during all stages of Parkinson's, and avoidable financial costs are incurred. However, impairment and diminished quality of life can be significantly reduced if patients are medically, psychologically and socially managed well, with the correct interventions and patient and carer education provided by competent and skilled individuals at the appropriate time.
Parkinson's is a common and complex condition. Patients can be grouped into the following periods of the disease process:
The needs of patients will vary depending upon which phase they are in. Within each given phase there is great diversity in terms of the motor and non-motor symptom problems and needs.
The Parkinson's and Other Movement Disorders HIT is also known as MOVE-hIT, which is short for the Bristol, North Somerset and South Gloucestershire Partnership for Parkinson's and Other Movement Disorders.
The overall aim of the Movement Disorders HIT is to develop whole system partnership working for movement disorders across the Bristol, North Somerset and South Gloucestershire region, and from this to evolve, over the next 10 years, a high quality, high impact, internationally-recognised system for Parkinson's and other movement disorders.
This will be achieved through incorporating and fully integrating all aspects of clinical and social care, translational research and competency based education, and by ensuring that this is supported by first class management and commissioning. Specific objectives are as follows:
The leading experts in Parkinson's and other movement disorder in the Bristol, North Somerset and South Gloucestershire area are involved in the team. The HIT's Director is Dr Alan Whone, Senior Lecturer in Movement Disorders and Consultant Neurologist at North Bristol NHS Trust. He is supported by Co-Director Lucy Mooney, Lead Movement Disorder Nurse Specialist at North Bristol NHS Trust.
Find out more about who's involved.
The PPI group for BNSSG for Parkinson's and Other Movement Disorders is well established and committed to being involved in this HIT, and there are two PPI group representatives on the executive team. They fully involve the PPI group and communicate the group's opinions regarding service design, delivery and audit. Each of the individual working groups (Service Delivery, Movement Disorders Research and Movement Disorders Education) will also seek the opinion and advice of the PPI group. We are also fully integrated with the Bristol branch of Parkinson's UK and have links with other branches in the BNSSG region.
With regards to research, a patient representative will be involved in all study initiation meetings and there will be a patient on any trial steering committee. For investigator led (academic) studies, the Patient and Public Involvement (PPI) group for the Parkinson's clinical and research service (MOVE) will be involved in the whole research process, from protocol design and participant information sheets through to publicising and disseminating results. The PPI group will be involved in deciding which multi-centre commercial and non-commercial studies should be adopted so research is meaningful to the local Parkinson's population.
The MOVE-HIT PPI group has an interest in physical and social activities that support wellbeing. Below are links to relevant activities in the region (this list will grow over time):
In order to achieve its aims and objectives, the Movement Disorders HIT is focusing on core projects over the short, medium and long term. These include:
Find out more about these projects and activities.
Organisations involved in the MOVE-hIT include:
To find out more, please contact:
MOVE HIT at the HIT conference
The MOVE HIT presented this poster (PDF) at the 2018 Bristol Health Partners Health Integration Team conference.