Reviews and Follow Up

Reviews and Follow Up

Patients should be offered 6-12 monthly reviews from a neurologist or a specialist ataxia neurologist (see Section Referral process and Appendix 1 for information on Specialist Ataxia Centres). If it is difficult for patients to travel to the hospital, follow-up appointments could be less frequent. Regular follow-up reviews are important for a number of reasons. Firstly, it enables the neurologist to monitor the progression of the condition and identify any new symptoms that may need treatment. Secondly, if patients are discharged and not offered a follow-up appointment they are not likely to benefit from medical advances. For example, new diagnostic tests are regularly becoming available, especially as new genes are identified, thus increasing the possibility of identifying a diagnosis for patients with ‘idiopathic’ cerebellar ataxia. In addition, new treatments may be developed, both ones that may affect disease progression and ones for symptomatic relief. Clinicians should consider the use of validated ataxia-specific rating scales for measuring progression of the ataxias (see section Research for details of these scales).

Regular follow-up of patients with Friedreich’s ataxia is necessary, specifically to monitor for the development of cardiomyopathy, diabetes, scoliosis and other treatable symptoms. Annual urine/blood tests for diabetes are also recommended.

For the majority of patients with ataxia, for most of the time, their ongoing management can be provided at the primary care level. In addition to regular input from their GPs, other professionals including community therapists are likely to be involved. Specific community nursing needs may be delivered by district nurses.

The hospital-based neurologist/ ataxia specialist will, however, remain involved as a coordinator and instigator of services. Effective communication between primary and secondary care is therefore vital. Multi-disciplinary, multi-professional working practices that are mutually supportive are important, as recommended by the National Service Framework for long-term conditions25. As ataxia is usually chronic and progressive, an even greater reliance on community services with the passage of time is likely. The establishing of durable networks of care at an early stage is therefore crucial. In line with recent recommendations in the National Service Framework for long-term conditions, involvement of symptom and palliative care professionals is recommended,25 especially as the disorder progresses. The remit at this stage may include providing practical and emotional support for carers, who are often family members (see section Palliative Care).