More about Parkinson's and Other Movement Disorders

Background

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.

1,780 people in the BNSSG area have Parkinson's, with one in five presenting before the age of 50

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:

  1. Diagnostic phase
  2. Maintenance phase
  3. Complex phase
  4. Palliative phase

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.

Aims and objectives

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:

  • Changing the commissioning of services away from organisations and contracts to commissioning high value, whole system pathways underpinned by networks rather than institutions
  • Ensuring all patients are referred to a specialist in movement disorders for diagnosis and on-going management
  • Ensuring all patients have access to a Parkinson's Nurse Specialist for on-going medication management, information, education and early onward referral to appropriate allied health professionals
  • Maximising patient self-management, care plans and information
  • Achieving joined up services between health and social care
  • Optimising the number of instances when the patient receives the right care, at the right time, in the right place from the right person
  • Identifing those most at risk, particularly those in residential and nursing homes, and plan their care as they approach end of life
  • Working with commissioners to develop Commissioning for Quality and Innovation (CQUIN) goals that reflect priority areas in improving the care of patients with Parkinson's in the BNSSG region
  • Increasing the HIT's NIHR footprint year-on-year. This will be reflected by recruitment figures and range and number of academic and commercial portfolio studies
  • Ensuring that all patients who wish to participate in research are offered the opportunity, and this will be quantified through audit
  • Details of NIHR and DeNDRoN supported studies and the research team will be posted in GP practices, all movement disorder clinics, on the MOVE-hIT website and the website of Parkinson's UK. This will increase patient self-referral for studies and result in recruitment to target in a timely manner
  • We will develop our portfolio to include studies of both medicinal and non-medicinal (rehabilitation) interventions
  • All income related to research activity will be regularly reviewed, audited and accounts made available to the PPI group
  • The development of education and training opportunities will be embedded in improving quality, innovation, productivity and prevention (QIPP)

Who's involved

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 Deputy Directors Kathryn Prout, Parkinson's Nurse Specialist, NHS South Gloucestershire Community Health Services, and Lucy Mooney, Lead Movement Disorder Nurse Specialist and Senior Research Nurse at North Bristol NHS Trust.

Find out more about who's involved.

How patients and the public are 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):

Projects and activities

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:

  • Service mapping and design
  • Developing a centre for excellence in Parkinson's research
  • Developing and maintaining a Parkinson's service of clinical excellence
  • Movement disorders education and training
  • Developing a centre for excellence in other movement disorders research
  • Developing and maintaining an other movement disorders service of clinical excellence

Find out more about these projects and activities.

Other collaborations and networks

Organisations involved in the MOVE-hIT include:

  • BNSSG Allied Health Professionals Special Interest Group for Parkinson's
    This group has over 60 members from the allied health professions. Members were invited due to expressing a particular interest in Parkinson's. Members include: physiotherapists, occupational therapists, speech and language therapists, community nurses / matrons, pharmacists, PD nurses, clinicians. The group is led by one of the executive members and one of the deputy directors.
  • South West and South Wales Basal Ganglia Club
    Learned body with membership of over 80 and includes preclinical and clinical movement disorder scientists (UoB and UWE) as well as NHS professionals. Group was founded and is chaired by the director.
  • Movement Disorders Industry Network
    Coordinated by Sue Thomas, Wilmington Healthcare, who is a member of the HIT executive. Currently we are linking with Britannia, UCB, Medgenesis, Renishaw, Medtronic and Boston Scientific.
  • Parkinson's UK
    Central office and local branches, but particularly a collaboration of branches from the BNSSG area facilitated by one of the executives.
  • BNSSG PPI Group for Parkinson's and Other Movement Disorders Clinical Services and Translational Research
    MOVE Group facilitated by one of the deputy directors.

Contacts

To find out more, please contact:

More about Parkinson's and Other Movement Disorders

Background

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.

1,780 people in the BNSSG area have Parkinson's, with one in five presenting before the age of 50

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:

  1. Diagnostic phase
  2. Maintenance phase
  3. Complex phase
  4. Palliative phase

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.

Aims and objectives

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:

  • Changing the commissioning of services away from organisations and contracts to commissioning high value, whole system pathways underpinned by networks rather than institutions
  • Ensuring all patients are referred to a specialist in movement disorders for diagnosis and on-going management
  • Ensuring all patients have access to a Parkinson's Nurse Specialist for on-going medication management, information, education and early onward referral to appropriate allied health professionals
  • Maximising patient self-management, care plans and information
  • Achieving joined up services between health and social care
  • Optimising the number of instances when the patient receives the right care, at the right time, in the right place from the right person
  • Identifing those most at risk, particularly those in residential and nursing homes, and plan their care as they approach end of life
  • Working with commissioners to develop Commissioning for Quality and Innovation (CQUIN) goals that reflect priority areas in improving the care of patients with Parkinson's in the BNSSG region
  • Increasing the HIT's NIHR footprint year-on-year. This will be reflected by recruitment figures and range and number of academic and commercial portfolio studies
  • Ensuring that all patients who wish to participate in research are offered the opportunity, and this will be quantified through audit
  • Details of NIHR and DeNDRoN supported studies and the research team will be posted in GP practices, all movement disorder clinics, on the MOVE-hIT website and the website of Parkinson's UK. This will increase patient self-referral for studies and result in recruitment to target in a timely manner
  • We will develop our portfolio to include studies of both medicinal and non-medicinal (rehabilitation) interventions
  • All income related to research activity will be regularly reviewed, audited and accounts made available to the PPI group
  • The development of education and training opportunities will be embedded in improving quality, innovation, productivity and prevention (QIPP)

Who's involved

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 Deputy Directors Kathryn Prout, Parkinson's Nurse Specialist, NHS South Gloucestershire Community Health Services, and Lucy Mooney, Lead Movement Disorder Nurse Specialist and Senior Research Nurse at North Bristol NHS Trust.

Find out more about who's involved.

How patients and the public are 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):

Projects and activities

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:

  • Service mapping and design
  • Developing a centre for excellence in Parkinson's research
  • Developing and maintaining a Parkinson's service of clinical excellence
  • Movement disorders education and training
  • Developing a centre for excellence in other movement disorders research
  • Developing and maintaining an other movement disorders service of clinical excellence

Find out more about these projects and activities.

Other collaborations and networks

Organisations involved in the MOVE-hIT include:

  • BNSSG Allied Health Professionals Special Interest Group for Parkinson's
    This group has over 60 members from the allied health professions. Members were invited due to expressing a particular interest in Parkinson's. Members include: physiotherapists, occupational therapists, speech and language therapists, community nurses / matrons, pharmacists, PD nurses, clinicians. The group is led by one of the executive members and one of the deputy directors.
  • South West and South Wales Basal Ganglia Club
    Learned body with membership of over 80 and includes preclinical and clinical movement disorder scientists (UoB and UWE) as well as NHS professionals. Group was founded and is chaired by the director.
  • Movement Disorders Industry Network
    Coordinated by Sue Thomas, Wilmington Healthcare, who is a member of the HIT executive. Currently we are linking with Britannia, UCB, Medgenesis, Renishaw, Medtronic and Boston Scientific.
  • Parkinson's UK
    Central office and local branches, but particularly a collaboration of branches from the BNSSG area facilitated by one of the executives.
  • BNSSG PPI Group for Parkinson's and Other Movement Disorders Clinical Services and Translational Research
    MOVE Group facilitated by one of the deputy directors.

Contacts

To find out more, please contact:

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