From surveys of Friends and the statistics from Sheffield and London Clinics, (see p8 above) we know that these are the people most satisfied with the care they receive and the most informed about their situation due to the integration of care and the better understanding of their condition that they gain from the Specialist Ataxia Nurses.  We estimate that around a third of people with ataxia from across the UK, attend the Specialist Ataxia Centres often travelling great distances to be able to do so. But this leaves ⅔ of patients without access to the ‘joined up’ care that would improve their lives.

There is a need for all people affected by ataxia to be supported by someone whose role is to help them navigate their ataxia journey and unlock the treatment and care, services, resources, and information they need, in a timely manner.

This diagram indicates the relationships and potential journey required for someone to obtain a diagnosis and unlock information/ resources. It shows the areas of problem frequently encountered in trying to navigate the NHS to get a diagnosis and the common

The below diagram indicates the relationships and potential journey required for someone to obtain a diagnosis and unlock information/ resources. It shows the areas of problem frequently encountered in trying to navigate the NHS to get a diagnosis and the common routes via which Friends access our services.

A Specialist Nurse can help people with ataxia join up the available services at the most appropriate time and be a source of information in between clinic appointments. They will refer to, and/or, give advice on, and explain, diagnosis services, Ataxia Centre, genetic counselling, physiotherapy, speech and language therapy, etc. In collaboration with the Ataxia UK Helpline, they will also advocate to health and social care, and education services (SEND). The role will improve the integration of Ataxia UK’s own services by providing support to the Helpline for medical queries, referral into the Helpline, Advocacy and peer support.

 

Within 3 weeks of joining Ataxia UK all new Friends (on their request), will be contacted by the Specialist Nurse with an offer of support and an explanation of what is available from Ataxia UK.

 

The role of the Ataxia UK Accredited Ataxia Centres is crucial in the network of care and support for people with ataxia. Their expert ataxia neurologists, Specialist Nurses, multi-disciplinary clinics, and facilitated access to allied health professionals are highly valued by Friends of Ataxia UK. The ataxia research they undertake is invaluable.

We will:

• encourage the development of further accredited centres, and aim to accredit at least four additional centres by 2025.
• seek the integration of Specialist Accredited Ataxia Centres into a national neurological pathway for the ataxias
• support the intended development of protocols for the appropriate use of virtual appointments as part of the Rare Diseases Framework
• explore the part we can play in attracting and supporting young clinicians, nurses and therapists with an interest in ataxia to specialise in working in the ataxias

Our Medical Guidelines are produced to help healthcare professionals in the diagnosis and management of ataxia. They are the result of extensive consultation with ataxia specialist neurologists and other healthcare professionals and include comprehensive sections on diagnosis, medical interventions for symptom relief and therapies. In November 2018 they were endorsed by the European Reference Network for rare neurological diseases (ERN-RND) and have also been accredited by the European Academy of Neurology. So many developments have taken place in the understanding of the ataxias, that a revision is now urgently needed.

We will

• publish the Medical Guidelines for the Treatment of the Ataxias (Fourth Edition)

Speech Therapy We have piloted an online peer supported speech therapy programme with Strathclyde University, demonstrating the value of this approach in terms of sustaining engagement. We have a waiting list of over 50 people for this service. We have also piloted and roll out, an online pilates project over the last year, with more than 120 participants since March 2021.

People with ataxia have told us of their difficulties in accessing mental health and counselling services, and of their need for services which they do get, to understand the nature of ataxia, and its impact. We are committed to exploring ways to enable people to access professional, accredited services appropriate to their needs.

We will

• run regular online Speech Therapy courses.
• Explore the delivery of other online therapy services
• Voicebanking – in partnership with SpeakUnique we will introduce a free Voicebanking service enabling people to preserve their own voice to use electronic speech should that be needed.
• We will explore potential partnerships for the delivery of counselling services
• We will work with others to press for adequate mental health provision in the NHS

Our Helpline has just been relaunched after a review; with a 3-year development plan which focuses on the creation of an advocacy service, engagement of trained volunteers with ataxia with pre-existing skills, backed by further expansion of the information we provide on our website, social media, and via videos, and e-newsletters. Over the last 5 months of 2021, the relaunched Helpline took 571 enquiries about issues as varied as benefits, access to specialist neurologists and medical care, housing adaptations, and meeting the extra costs involved in having ataxia.

We will

• Increase benefits and money advice services across the UK, providing a bespoke service in Scotland and other devolved countries as possible.
• Review and design the structure of our website to ensure that information is easier to find, and meets with best practice in website accessibility.
• We will extend the information available on the website.

All About Ataxia seminars aim to give people who have a relatively recent diagnosis, information about ataxia. The sessions give anyone affected by ataxia (patients, carers/family members) information about the clinical and practical implications of living with ataxia. They explain what is known about ataxia, how it may progress, and what can be done to mitigate its effects. To make sure that the clinical information we give is absolutely accurate the sessions feature videos made in collaboration with the neurologists, nurses and therapists associated with the Sheffield Accredited Specialist Ataxia Centre looking at all aspects of ataxia. The programme is facilitated by people with diagnoses of ataxia who have been trained to deliver it. They share their life experiences, and offer tips and coping strategies. Between them they have over 60 years’ experience of living with an ataxia diagnosis! The seminars encourage many people to take advantage of the peer support available through branches, support groups, and online, and have also produced many Ataxia UK volunteers.

We are aware of a number of people who have found All About Ataxia useful, despite having had a diagnosis of ataxia for a number of years. Feedback from participants has suggested a seminar aimed at people with a longer-standing diagnosis. We will also explore other topics that can be presented using the same model of pre-prepared ‘expert videos’ and facilitation by people affected by ataxia .. All About Ataxia and… Mobility; …..Employment; ……Aids and Adaptations; …….Housing……

We will

• Deliver an All About Ataxia seminar for people with a longstanding diagnosis
• Develop an “All About Ataxia and…..“

We have a long-term collaboration with FARA US in hosting the bi-annual ataxia international research conference. The collaboration has now been joined by the US charity, the National Ataxia Foundation with whom we will host the International Conference in Ataxia Research 2022 in Dallas in November. It is the turn of Ataxia UK to arrange the Conference in 2024.

We will

• Collaborate in hosting ICAR 2022
• Deliver ICAR 2024

Ataxia UK is a participant as a Patient Advocacy Organisation (PAO) in a number of global and European research projects, which are increasingly prepared to acknowledge the work of PAOs, and provide resources to charities to undertake the work.

We will

• Seek out opportunities to participate in research projects as Patient Advocates

The need for a European umbrella charity increasingly evident, but the development of Euro-ataxia has been impeded through lack of resources to kick it off. A small investment would enable this to happen. It’s increasingly valuable to us – but we are in a weak position vis-à-vis the competition of FARA USA who now have a member of staff located in Europe.

We will

• Work to strengthen Euro-ataxia by raising funds for the employment of staff administrative resources
• Seek out further opportunities for Euro-ataxia to participate in research projects as Patient Advocates

Before 2019 we co-ordinated the delivery of a number of face-to-face information and training events for clinicians and therapists and have recently collaborated with Sheffield Ataxia Centre in an online event for nearly 200 people.

We will

• Develop and deliver a regular training event for clinicians and therapists – ideally with pre-recorded re-usable video material and some live content.

We will

• Increase the involvement of people affected by ataxia in the research process and activities

Staff Recruitment and Retention

The charity sector is facing significant difficulties in the recruitment of staff, particularly in the area of fundraising. Failure to recruit staff quickly and efficiently may prejudice the raising of funds and/or the delivery of projects and services.

We will

• Ensure that our employment package (financial and non-financial) is competitive
• Ensure that we continue our high standards of well-being support
• Actively foster a positive staff culture which enables everybody who works for Ataxia UK to understand, embrace, and be committed to our Mission, Values and Objectives and understand the valuable part that they play in meeting the Objectives.
• Ensure that all roles have as much agency as possible

Project Delivery

The chart of existing and planned projects clearly demonstrates the departmental interdependence for successful delivery of most work – i.e. there are very few pieces of work that are undertaken exclusively by one department. Crossdepartmental Project Teams are already developing for the delivery of projects such as Conferences.

We will

• Develop matrix project management structures with clearly defined responsibilities for Project Managers
• We will consider whether certain Project Management responsibilities might attract salary bonus payments when not held by Managers or SMT

Senior Management Team Development

In December 2019 the SMT had the first of a planned series of SMT Development Days, which was abandoned due to the pandemic.

We will

• Resume SMT Development programme