Robin FackrellAs a student, it was his mentor’s passion for Parkinson’s that started Dr Robin Fackrell on his own journey. Dorothy Robertson was also a geriatrician who was a specialist in the complex condition, and Robin set about developing his expertise, of which the MasterClass attendance was a part, so that as his mentor retired he could take up the mantle.

He did just that, and now leads for movement disorders across a large patch of the Westcountry with a population of 500,000 and an estimated 1,300 Parkinson’s patients. The Parkinson’s clinic he runs is multidisciplinary, with specialist nurses and clinicians across speech and language, occupational health, psychology and nutrition all available to his patients from diagnosis through to the end of life.

This holistic care team, commissioned as such, means that Robin’s patients are seen quickly by the best person to support them, sometimes in the same clinic session. ‘I’m especially interested in the non-motor symptoms – the ‘hidden’ symptoms, and we manage these particularly well in our clinic’, he says. These symptoms might be anything from fatigue and depression to bladder and bowel difficulties or sexual dysfunction.

‘People continue to think of Parkinson’s as a movement disorder, which of course it is, but it’s often the hidden symptoms that affect a person’s quality of life more,’ Robin explains. ‘If we can treat these things well and early on, it often makes a huge difference to that person’s overall experience of the condition.’

Robin uses this holistic approach to support patients with other conditions that are often thought to be ‘Parkinsonian’ in nature, like progressive supranuclear palsy (PSP), multiple system atrophy (MSA) and corticobasal degeneration (CBD). He also involves the national charities for these conditions, CurePSP and the PSP Association, in his work and sees the patient as a core member of the team. ‘The main caregiver is a really important part of the team too,’ he makes clear. ‘Sometimes the person living with the condition won’t give you the most accurate picture of their condition, but their carer really knows what’s going on and can give an important bystander account. It’s important they feel heard too,’ he says.

Referrals into the multidisciplinary team often come from Robin’s diagnostic clinic, and he is very clear that high quality care must start from that first appointment with him. ‘We as clinicians give the diagnosis of Parkinson’s hundreds of times each year. That patient will only hear it once.’ Robin works alongside national bodies like charity Parkinson’s UK and the National Parkinson’s Excellence Network to really highlight the importance of giving a good diagnosis, and he feels very strongly about the impression that a person is left with on hearing that they will live the rest of their lives with Parkinson’s. ‘The appointment at which a diagnosis of Parkinson’s is given can be a big blur, and looking back I doubt my patients remember exactly what I said to them – but they’ll certainly remember how they felt when I said it.’

It is this ethos to put his patients and their experience of Parkinson’s care first that is at the centre of Robin’s practice. From a good diagnosis, to early and effective management of those ‘hidden’ symptoms, or timely access to palliative care, Robin constantly prioritises the quality of life for his patients. In his role as Faculty on the Parkinson’s MasterClass, with national bodies like the Excellence Network and through speaking events across the country, he encourages his peers to do likewise.

 

 

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