Specialist Ataxia Nurse - Ataxia UK

Ataxia UK is looking for a skilled and dedicated Specialist Ataxia Nurse for our new community-based nursing service, focused on supporting individuals with ataxia in the South West of England. The role is a significant development in expanding access to expert and joined-up ataxia care for the ataxia community, particularly in regions currently underserved by neurologists with expertise in the ataxias.

As a Specialist Ataxia Nurse, you will provide personalised, face-to-face, and remote support to patients, assisting them in navigating the NHS and social care systems. Your responsibilities will include supporting patients during medical appointments, coordinating essential therapies such as physiotherapy, speech therapy, and occupational therapy, and building strong relationships with healthcare professionals to enhance understanding and treatment of ataxia. Additionally, you will contribute to the development of resources and information for the ataxia community.

We are looking for an experienced nurse with a background in neurology or chronic disease management and a strong commitment to patient advocacy. The ideal candidate will be a clear communicator, capable of working independently while collaborating effectively with multidisciplinary teams. Your role will be vital in ensuring that individuals with ataxia receive timely and appropriate care, helping them to manage their condition and maintain their quality of life.,

• Conditions: 25 days annual leave pa pro-rata, plus an additional day for birthday; rising by a day per year to 30 days (not including Bank Holidays). 5% employer contribution to a personal pension plan.


• Hours: 35 hours pw with provision for flexible working in line with Ataxia UK's policy. Some out of hours work may be required for which time off in lieu will be granted.


• Location: Home-based with travel within the Southwest region and some travel to Ataxia UK Office (North London)


• Reporting to: Head of Services


• Purpose of job: This new post is funded by the National Lottery Community Fund to play a key role in information and support service delivery and to act as an ambassador for Ataxia UK.


• Working contacts: Ataxia UK staff; trustees of Ataxia UK (and partner organisations); Friends (members) of Ataxia UK, suppliers; corporate contacts; statutory funding agencies; relevant NHS stakeholders, media, press & publicity agencies, Negotiate and broker referral/access to clinical and therapeutic services for patients who are experiencing difficulties in obtaining suitable treatment and care.


• Establish and attend multi-disciplinary or specialist ataxia clinics as they develop and as agreed.


• Attend relevant health and care professional conferences promoting the work of Ataxia UK.


• Maintain knowledge of ataxia and developments in health and social care policy and NHS policy relevant to it.


• Maintain continuing professional development for the role and for Nursing and Midwifery Council registration or other relevant professional body.


• Delivering high-quality information, support, advice and signposting in a professional and sensitive manner in both your geographical area (Southwest) and to the rest of England via the Ataxia UK Helpline.


• Maintain a working knowledge of the role, services and resources of Ataxia UK.


• Attend Services Team meetings, Services Committee meetings and support group meetings, and Ataxia UK events.


Detailed Responsibilities

Negotiate and broker referral/access to clinical and therapeutic services:

• Assess patient needs and identify suitable services.


• Build and maintain a network of healthcare providers.


• Facilitate referrals and coordinate care plans.


• Advocate for patients facing barriers to access.


• Monitor and evaluate the effectiveness of referrals and interventions.


Establish and attend multi-disciplinary or specialist ataxia clinics:

• Participate in the planning and development of new clinics.


• Contribute to multi-disciplinary team meetings and specialist clinics.


• Provide expert input on care plans and interventions.


• Attend patient appointments to offer support and ensure understanding.


• Promote collaboration among healthcare professionals for holistic care.


Delivering high-quality information, support, advice, and signposting:

• Offer consultations with patients and families, both in-person and remotely.


• Develop and share educational materials and resources.


• Respond to inquiries through the Ataxia UK Helpline.


• Host webinars and participate in online support groups.


• Ensure patient-centred, empathetic, and sensitive communication.


• Maintain accurate records of interactions and follow-ups.


Attend relevant health and care professional conferences:

• Register for and attend relevant conferences, workshops, and seminars.


• Represent Ataxia UK and promote its mission and services.


• Network with professionals and share knowledge and best practices.


• Present on ataxia care topics when possible.


• Share conference learnings with the Ataxia UK team.


Maintain knowledge of ataxia and developments in health and social care policy:

• Review relevant medical journals and publications.


• Participate in continuing education courses.


• Stay updated on health and social care policy changes affecting ataxia patients.


• Apply new research findings and policy updates to improve care.


• Share insights with the Ataxia UK team and professional network.


Maintain continuing professional development:

• Complete required CPD activities for professional accreditation.


• Participate in training sessions and professional development.


• Reflect on practice and seek feedback for improvement.


• Set and work towards personal development goals.


• Engage in supervision and peer support sessions.


Maintain a working knowledge of the role, services, and resources of Ataxia UK:

• Stay informed about all Ataxia UK services and initiatives.


• Share information about Ataxia UK's offerings with stakeholders.


• Collaborate with the team to identify service gaps and develop new resources.


Attend Services Team meetings, Services Committee meetings, support group meetings, and Ataxia UK events:

• Prepare for and participate in Services Team and Services Committee meetings.


• Support and facilitate support group meetings.


• Attend and contribute to Ataxia UK events, eg fundraising and awareness campaigns.


• Collaborate with colleagues and volunteers for event success.


• Provide feedback to improve Ataxia UK's services and support activities.


Note: This job description sets out the duties of the post at the time it was drawn up. Such duties may vary from time to time without changing the general character of the duties or the level of responsibility entailed. Such variations are a common occurrence and cannot themselves justify a reconsideration of the grading of the post. Ataxia UK reserves the right to update the Job Description from time to time to reflect these changes in or to the post after consultation about any proposed changes.

We're seeking a nurse experienced in long term and/or rare neurological conditions, preferably with experience of the ataxias.,
• Degree level or equivalent experience


• Registered adult nurse, currently registered with the Nursing & Midwifery Council


Desirable Criteria:

• Masters level or equivalent.


Experience

Essential Criteria:

• Minimum two years' experience of working within neurology.


• Experience of formal and informal teaching to health and care professionals


• Experience of formal and informal teaching to health and care professionals


• Practical experience in research and/or auditing research


Desirable Criteria:

• Experience in a specialist nursing role, preferably within neurology or a related field.


• Experience working with paediatric patients in a neurological or related setting.


• Experience of working in a community setting.


• Experience in delivering information, advice, and support to patients and caregivers in non-clinical settings., Ability to demonstrate knowledge of the issues associated with serious/long-term conditions


• Demonstrable knowledge and competence in clinical skills following NMC standards of proficiency.


• Proven competence using MS Office, database and reporting systems.


• Experience of working/supporting patients online.


• Demonstrable experience in accurate record keeping, maintaining confidentiality, and compliance with GDPR regulations.


Desirable Criteria:

• Demonstrable knowledge of neurological and genetic diseases and healthcare support of people living with such conditions, Excellent interpersonal verbal and written communication skills


• Ability to manage and communicate complex communications at all levels.


• Ability to work as part of a team and on own initiative.


• Able to demonstrate awareness of research and evidence-based practice


• Ability to work under pressure, manage projects and meet deadlines


• Ability to show discretion when working with confidential and sensitive information


• An understanding of, and commitment to, the maintenance of confidentiality regarding patient information.


• Willingness to work variable hours


• Car driver with ability to travel round the South West region.


• Support for the ethical use of animals in medical research and human embryonic stem cell research.
  
  Ataxia is the umbrella term for a group of neurological conditions and Ataxia UK is the UK's leading ataxia support and research charity. We are excited to be recruiting a Specialist Nurse to join our small and friendly services team. The post holder will provide information and advice via our Helpline and work to extend the provision of ataxia specialist nursing in the Southwest of England.
  
  25 days annual leave (rising to 30 with a length of service)


• An extra day's holiday for your birthday


• Free Employee Assistance Programme & Employee Hotline


• Flexible working


• Pension scheme


• Enhanced maternity and co-parental leave


• Cycle to work scheme


• Training and development opportunities


• Accredited Living Wage Employer, Salary: Starting salary: Depending on experience. Within NHS Agenda for Change Band 7 rising annually by 4 increments of £500 payable on 1 April (on completion of 12 months continuous employment in the preceding year).