Motor neurone disease specialist Anita Sinclair is making waves here and overseas.
Tell us about the MND service you have set up in Wiltshire?
It was initially a one-year project from June 2014, funded by the Motor Neurone Disease Association and the Wiltshire Clinical Commissioning Group (CCG). As respiratory specialist physiotherapist for neurological conditions, I am based in Wiltshire’s NHS community services. The aim is to offer patients and their families a co-ordinated approach to their complex care needs, including the avoidance of unnecessary hospital admissions, interventions and referrals to consultant outpatient clinics. Care is provided close to or at home and enables fulfilment of patients’ wishes to die in their place of choice. The CCG made the role and service substantive last June.
Was it difficult to set up the service?
It was clear from the beginning it was going to be a steep challenge to collect enough evidence to persuade the CCG to commission the service as an ongoing concern. But with the support of a steering group, I established a robust, co-ordinated service that included respiratory pathways and training packages, and which links with the acute sector, tertiary services, social services and voluntary sector.
Improved respiratory pathways allow better access to the right equipment. And timely interventions in the community help ensure that patients can be assessed immediately, preventing the need to attend consultant clinics. Assessment at home allows for prompt decision-making around key areas in the management of MND patients, significantly improving quality of life.
How was the service evaluated?
A comprehensive evaluation report was submitted with quantitative and qualitative outcomes. Feedback from patients, families and carers was overwhelmingly positive, with emphasis on the value of having someone to co-ordinate the complex care required. Clinicians’ feedback showed increased knowledge and confidence in managing patients with MND in community settings.
Tell us about your professional background
I’m employed by Great Western Hospitals NHS Trust as a band 7 specialist physiotherapist for neurological conditions. I have experience in respiratory, neurology and palliative care. My main caseload is patients with MND and other neuromuscular conditions with respiratory needs. Prior to this role, I worked as a community motor neurone practitioner in Gloucestershire, which again was funded initially by the MND Association.
To maintain competence and uphold best practise I collaborate and link with MND centres in Oxford and Bristol, respiratory and neurology consultants from three acute trusts and the local GP case holders. I’m also currently undertaking the independent prescriber course as part of an advanced practice master’s programme.
I believe that with complex conditions such as MND, where there is very little in the way of treatment, being able to provide the best support in a timely way becomes increasingly important. The priority must be to allow individuals to experience the best possible quality of life.
I have been honoured to receive three Extra Mile awards from the MND Association.
And you’re forging international links?
Rare conditions such as MND require a high level of networking to benchmark and to ensure best practice is shared. I have started to link with the Motor Neurone Disease Service (ALS Clinic) at Alberta University in Edmonton, Canada. The aim is to visit this summer. I’m also part of a small team in the early stages of building a rehabilitation centre in Dar-es-Salaam, Tanzania.
What tips would you give physios on creating something new?
Don’t sit in traditional roles; apply for posts that often go to other disciplines. This will open up opportunities and a platform to set up new initiatives.
Create a large network of people within and outside your organisation. This will allow you to develop and widen your perspective on what is available and possible.
Setting up a new service will bring change in practice, and will require patience and time. Don’t get despondent. It is worth it in the end! fl
Anita Sinclair community clinical lead, neurology and respiratory, Great Western Hospitals NHS Foundation Trust
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