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  • Health and social care representatives
  1. About us
  2. Policy work
  3. Health and Social Care representatives

Health and social care representatives

We work with a number of clinical advisers and clinical networks in the UK. This is a two way process with advisers providing and validating our information and advice services, and with Dystonia UK promoting the needs and concerns of patients. This relationship has proved to be especially important during the covid-19 pandemic. We also work with organisations committed to improving standards of care.

Medical advisors

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Our team of medical advisers operate across the UK with special interests including paediatrics, adult onset, botulinum toxin, ophthalmology, ear, nose & throat, psychology and research.

They are:

  • Dr Jean-Pierre Lin
  • Dr Kathryn Peall
  • Dr Marie-Helene Marion
  • Mr Daniel Ezra
  • Ms Lucy Hicklin
  • Professor Emeritus Marjan Jahanshahi
  • Professor Mark Edwards
  • Professor Tom Warner

You can find out more about our medical advisors on our team page.

Published: 1st July, 2023

Updated: 27th July, 2023

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Association of British Neurologists

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The aim of the Association of British Neurologists is to promote excellent standards of care and champion high-quality education and world-class research in neurology. To support this they offer support, training, development, and networking opportunities to neurologists in the UK and Ireland.

Published: 2nd July, 2023

Updated: 27th July, 2023

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British Neurotoxin Network

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The British Neurotoxin Network (BNN) was founded in 2011 to gather British clinicians who use Botulinum toxin (BoNT-A) injections for the treatment of focal dystonia, spasticity, and other neurological disorders. It maintains information on clinics presenting both patients and doctors with the most appropriate medical centre for the treatment of each condition type.

For many years, we have been invited to represent the patient voice at their annual meeting. We welcome this valuable opportunity to ensure your voice is heard.

Published: 3rd July, 2023

Updated: 27th July, 2023

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British Paediatric Neurology Association

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The British Paediatric Neurology Association is the professional organisation for doctors who specialise in the care of children with neurological disorders.

It aims to promote the health and well-being of children with neurological disorders through:

  • training and education of professionals working in the field of neurosciences
  • research into neurological disorders affecting children & young people
  • improvement of knowledge of professionals, the public and patients and their families through scientific meetings
  • providing support to members to facilitate the delivery of the above objectives

Published: 4th July, 2023

Updated: 27th July, 2023

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NICE (National Institute for Health and Care Excellence)

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NICE’s role is to improve outcomes for people using the NHS and other public health and social care services.

They do this by:

  • producing evidence-based guidance and advice for health, public health and social care practitioners
  • developing quality standards and performance metrics for those providing and commissioning health, public health and social care services
  • providing a range of information services for commissioners, practitioners and managers across health and social care

Where appropriate we provide comments and evidence on clinical guidelines.

In 2021 we were especially pleased to be involved in their work producing a new "Suspected Neurological Conditions" quality standard. You can read more about this work here. 

Published: 5th July, 2023

Updated: 27th July, 2023

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National Voices

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National Voices is the coalition of charities that stands for people being in control of their health and care. We are one of more than 140 charity members. This gives us access to a variety of reports and guidance that we can build into our own work of supporting people with dystonia and lobbying for better services.

Their work falls into three streams:

  • supporting national policy and system design so that people have as much control and influence as possible over decisions that affect their own health and care – as patients, carers and members of communities
  • supporting the vital role that the Voluntary, Community and Social Enterprise sector plays in health and care
  • supporting the adoption and spread of person-centred approaches

Published: 6th July, 2023

Updated: 27th July, 2023

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Healthwatch

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Healthwatch are the independent national champion for people who use health and social care services. There is a local Healthwatch in every area of England. They support local Healthwatch to find out what people like about services, and what could be improved, and share these views with those with the power to make change happen. Healthwatch also help people find the information they need about services in their area.

Healthwatch are a statutory body and we want to work with them to ensure that neurological conditions like dystonia are given the right priority in the design of local health and care systems.

Published: 7th July, 2023

Updated: 27th July, 2023

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Latest

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Most read

  • What is dystonia?

    What is dystonia?

    Dystonia is a neurological condition that is estimated to affect at least 100,000 people in the UK. Learn more about it here.

  • What are the symptoms?

  • What causes dystonia?

    What causes dystonia?

    The cause of dystonia is not yet fully understood, in some cases at least it can be attributed to a chemical imbalance in the part of the brain called the basal ganglia, a part which helps to control movement.

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  • What are the symptoms?

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020 7793 3651

Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered as a charity in England and Wales (1062595) and in Scotland (SC042127)

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