Taking the initiative: supporting young people with epilepsy

Being at school can be challenging at the best of times. But imagine having to contend with the added complication that you might, at any moment, have a seizure. For many young people with epilepsy this possibility is ever-present. The NHS estimates that more than 600,000 people in the UK have epilepsy, of whom 112,000 are aged under 25.

 

The unpredictable nature of the condition can have a severe impact on young people’s education and their physical, mental and social development. But since 1904 a UK charity has been working to address this problem, by providing young people with epilepsy with a safe and stable learning environment. Young Epilepsy, previously known as the National Centre for Young People with Epilepsy, is based in Lingfield, Surrey. The charity’s 60-acre site includes St Piers school, a college, residential houses, research facilities and a specialist medical centre, equipped with an assessment and rehabilitation unit. 

 

Pupils aged from five to 19 attend St Piers school and the college accepts students aged 19 to 25. At present, there are 77 students at the school and 120 at the college. There are only 23 day students at the school and 26 at the college, so most students live on campus during term-time and return home for the holidays.

 

Band 7 specialist physiotherapist Dinah Mabbutt has worked at the charity since 2010. She is one of five part-time physiotherapists based on the campus, along with two physio technicians. ‘The physios work across the site and we rotate between areas as and when it suits the service and the students,’ says Mrs Mabbutt. The charity aims to improve the quality of life for young people with epilepsy and other neurological conditions, she explains.

 

People with epilepsy experience recurring seizures. The condition arises from abnormal electrical discharges in the brain that create sudden changes in sensation, behaviour or consciousness. These changes can result in more than 40 different types of seizure – ranging from someone simply going ‘blank’ for a few seconds to losing consciousness and convulsing.

 

‘Quite a few of our students have “drop seizures” where they fall to the ground, and those can be alarming,’ says Mrs Mabbutt. The students’ related conditions include attention deficit hyperactivity disorder, acquired brain injuries, autism spectrum disorders, behavioural difficulties and moderate to severe learning difficulties. 

 

‘Alongside all of those are a range of other physical difficulties which may be part of the same condition or associated.  Some people temporarily lose mobility after a seizure,’ says Mrs Mabbutt. Seizures can affect a young person’s muscle tone, behaviour, alertness and confidence – all of which can lead to fluctuations in physical performance.

 

Young people can be referred to the school by their parents or guardians, education authorities, social care representatives, clinical commissioning groups or medical professionals. A multidisciplinary team, including physios, reviews all the referrals and free assessment visits may then be arranged. This allows the team to evaluate a young person’s needs and decide if the school or college can arrange appropriate provision. Based on this an offer of a placement may be made. 

 

If a local authority or a health commissioner makes the referral then funding for the placement will already be in place. But when a parent or guardian makes a referral the process can take longer, as the relevant authorities must then agree that the placement is appropriate and the option makes the best use of public funds.

‘One of the great things about working here is the variety that the physio role encompasses,’ says Mrs Mabbutt. Colleagues support children and young people on-site by helping them to regain or improve skills. They also provide rehab to those who may have undergone surgery or sustained injuries while having a seizure. ‘Every student has their own programme that’s tailored to their needs,’ says Mrs Mabbutt. ‘And having all the therapies on site is a huge benefit as we can be flexible with our timings.’

 

The treatments provided include rebound therapy, aquatic therapy, horse riding, core stability groups, relaxation sessions and individual sessions. The physios are also involved in the provision and monitoring of equipment, such as specialist seating, wheelchairs, standing frames, walking aids, sleep systems, bikes and sensory dynamic orthosis [Lycra garments that provide sensory feedback, as well as postural support]. In addition they are involved in care plans, organising programmes for the staff to carry out with students and planning meetings. 

 

‘At present plans are being finalised for two exciting projects: the new school that will open in spring 2016, and a newly designed therapy centre in the college,’ says Mrs Mabbutt. ‘So we have been involved in the planning of the therapy rooms, the equipment, and making sure there is appropriate provision, such as tracking for the non-weight bearing students.’ The wide range of tasks the physios are involved in is part of the holistic approach that has been key to the charity’s success, says Mrs Mabbutt.

 

‘Working here it is imperative to liaise with other professionals – and the multidisciplinary ethos is fantastic,’ she says. ‘On site we have registrars, a medical team, educational staff, care staff, psychologists, play therapists, speech and language therapists, occupational therapists and physios. So it really is multidisciplinary in the best sense of the word.’

People with epilepsy can be encouraged to use wheelchairs if this reduces the risk of falling and injuring themselves when a seizure occurs. As a result, when children and young people arrive at Young Epilepsy the physios sometimes find that their walking and balance has been compromised.

 

‘Because those around them are wary of seizures they have been encouraged to stay in their wheelchairs,’ explains Mrs Mabbutt.

 

In such cases the children’s motor development may have been affected and they may lack the confidence to move around unaided. The physios work to promote mobility and increase independence. ‘There are always risks but we discuss the options with parents and take preventive measures,’ says Mrs Mabbutt. ‘Many of the students wear helmets and we can pad surfaces and do whatever we can to make the environment as safe as possible.’

 

As with any role Mrs Mabbutt says there can be hurdles to overcome. Many students have behavioural issues or are unable to cooperate or follow instructions, making delivering rehab a challenge. In addition, the fluctuating nature of epilepsy means that rehab gains and goals shift. 

 

But she adds that a key benefit of working for the charity is the accessibility of students and staff. ‘The students are fantastic, and having the privilege of getting to know and work with them is amazing.’ In addition, she says there is a lot of receptiveness to physiotherapy at the charity – from students, parents and other staff.

 

‘At a recent annual review a parent said to me: “I just want to say thank you – if only I’d known what physio could do I would have pushed for my child to have it earlier”.’ fl