Patient Pathways - Ataxia UK

Patient Pathways

Patient Pathways

An important part of Ataxia UK's work is improving treatment and healthcare for people affected by ataxia.

Due to the rarity of the ataxias, many healthcare professionals will not be familiar with them. In the Healthcare Professionals area of the website, you can find out how to refer patients to a specialist clinician or one of our Specialist Ataxia Centres; access our Ataxia Medical Guidelines and other publications to advise how to treat people with ataxia, and training opportunities.

We work closely with healthcare professionals with expertise in ataxia and are keen to engage with others and provide support where needed. Ataxia UK has a Medical Advisory Panel who provide advice to the charity.

You can also apply for a grant or search for on-going healthcare research projects.

Optimal clinical pathway for people in England with rare neurological conditions
Published in 2023, the optimal clinical pathway sets out what good treatment, care and support looks like for people with neurological conditions, from those experiencing the first symptoms, to those that have lived with such conditions for a long time. When Ataxia UK was notified that a pathway was to be created for people with movement disorders, we successfully lobbied for a pathway for people with ataxia to be included. The pathway shows the ideal route to care within the NHS in England, and emphasises the important role of the specialist ataxia centres. The creation of this pathway was overseen by the National Neurosciences Advisory Group (NNAG), with support from NHS England, and input from Ataxia UK and ataxia specialists. For more information, click here.

Improving Healthcare And Treatment
Ataxia UK works in partnership with other organisations to campaign for better healthcare services for people with ataxia. We are active members of the Neurological Alliance, the organisation that campaigns for people with neurological conditions and various Friends of Ataxia UK are involved with local branches of the Neurological Alliance. Ataxia UK is also a member and works closely with Genetic Alliance UK and Rare Disease UK, the umbrella organisations working for people with genetic conditions and rare conditions respectively.

Ataxia UK’s CEO is also actively involved in influencing NHS policies by being a member of the NHS England Commissioning Board Specialist Services Commissioning Public and Patient Engagement Steering Group. The group has overseen all of the patient and public involvement in the consultations over the design of the new structures and clinical services of the NHS. In the light of the prominence given to the Patient Voice in the ‘new’ NHS, this group has been one of the most important fora of relevance to people affected by ataxia, to which the voluntary sector has had access. This group was a transitional group and has now been replaced by Public and Patient Voices Assurance Group for Specialised Commissioning.

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