3 minutes with ... Clare Hughes

What’s it like working as a lone physio for a charity?

There are definitely challenges, but these go hand-in-hand with great opportunities. There’s more freedom to be person-centred and respond quickly with incredible job satisfaction. It can be difficult to be the lone professional, although I’m fortunate to work in a team that values physiotherapy’s unique input. This prompts me to be proactive about continuing professional development and learning opportunities, as ultimately the buck stops with me when it comes to making clinical decisions.

How did you carve out a role and are more physio staff needed?

Physiotherapy has always had an important role within SeeAbility’s Heather House, the specialist service for people with Juvenile Batten Disease. My focus has been on increasing the physio team’s productivity and promoting the importance of physiotherapy to people’s quality of life. I’ve worked with the fundraising team to increase the assistant hours from 37.5 to 83 hours a week – this has had a big impact.

SeeAbility is a much bigger organisation than just Heather House. The charity has more than 20 services, supporting people who have multiple disabilities, including visual impairment. These individuals rely on the local NHS physiotherapy provision. This varies from region to region. I’m currently writing a report on physiotherapy needs within SeeAbility compared to the local NHS provision. The funding for adults with learning disabilities or mental health issues is so inconsistent. I now have the rather daunting task of writing a report and providing SeeAbility with recommendations for physiotherapy investment – there’s definitely a need for more physiotherapy staff, so watch this space.

You work in the only specialist centre for people with Juvenile Batten Disease (JBD). Tell us more.

JBD is a rare genetic neuro-degenerative condition. Few therapists will ever come across a patient with this condition in their career, but I have now worked closely with 17 individuals in five years. Individuals are born apparently healthy, but subsequently lose their sight and develop epilepsy with a gradual decline in their physical and cognitive abilities. Heather House is unique in caring for people in the later stages of the disease. We’ve developed specific support strategies for managing epilepsy and many other areas of people’s care. As a result the life expectancy for the individuals here is higher than the international average. We work closely with the Batten Disease Family Association and offer support and advice to other professionals nationally and around the world.

You are lead staff forum rep at SeeAbility. What have you achieved?

The staff forum was revamped last year creating the new lead rep role and I was elected. I organise and chair the meetings and support the local reps. I identified that decisions impacting on staff were made between forum meetings, without the opportunity for our input. This has now changed and we’re able to gain colleagues’ feedback on topics like pay and provide the staff perspective before decisions are made. As people see results, the forum is gaining in momentum and reputation across the organisation. 

Is obtaining wheelchairs an issue since commissioning came into the NHS?

This is an increasing problem, although the local wheelchair services hasn’t gone out to tender. Waiting times have gone through the roof from six weeks to 14 months where previously the service quickly responded to people’s rapid deterioration in posture. Nationally, I am involved in a NHS better commissioning and procurement working party. Locally, I advocate for specific chairs to meet individuals’ needs long term, rather than the false economy of providing something that needs to be frequently reviewed and upgraded.

How do you relax away from work?

I am an avid reader and devour books at a worrying rate. I’ve just bought a house which means I’ll be indulging in a spot of grown up ‘Blue Peter’ as I stretch my DIY skills to the max. I also love spending time with friends with a cup of tea in hand.

• Batten Disease Family Association

• SeeAbility

Clare Hughes is based at Heather House, Tadley, Hampshire

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