Introduction It is widely agreed that a specialist service is required to meet the complex needs of HD patients and ensure that they are not deprived from essential care on grounds related to their physical or psychiatric disabilities. Our service has been focussing on developing a holistic inter disciplinary care approach in different clinical settings.
Inter-disciplinary outpatient specialist HD clinic Professionals who are running the clinic include: Consultant Neuropsychiatrist, Occupational Therapist, Speech and Language Therapist, Palliative Care Nurse Specialist, Psychologist and a Huntington's Disease Association (HDA) representative. The waiting area will have suitable refreshments; promoting appropriate eating and drinking habits. After all patients are seen, the team meet up to present individual assessments and agree a comprehensive care plan. The clinic is highly appreciated by trainees from various departments.
Service users views on our HD services The clinic is regarded as an excellent forum that fully addresses clients’ and carers’ needs without having to travel repeatedly for appointments (inconvenient and costly) to receive a potentially less integrated care. The appointments are conveniently arranged and the time spent in the clinic gives clinicians more insight into the family dynamics and addresses practical problems. Communication between clinicians has also improved since they are able to discuss their findings face to face and agree the way forward. On the other hand, it is acknowledged that the clinic can be rather tiring for some patients. Among other strategies, pairing up of staff or getting the patient to only see professionals that are most relevant to their difficulties, is considered. A good advance introduction to the structure of the clinic does also help clients appreciate what to expect.
Future aspirations The team have aspirations to further develop quantifiable outcomes to scientifically demonstrate the clinical and cost effective value of the service and be more able to communicate this to stakeholders.
- Huntington's disease
- interdisciplinary clinics