Getting stroke survivors the sight loss support they need

Trina Wallace reports from NB Live on care provision and the unmet need for post-stroke visual impairment.

“You’ve got visual impairment but there’s nothing we can do.”It’s hard to believe, but those are the words many people who have survived a stroke have heard. In research that she presented at the NB Live Conference 2014, Dr Fiona Rowe discovered that stroke survivors aren’t getting the help they need to live with their visual impairment.

“There’s a lot of misinformation out there,” she said. “It’s poppycock that nothing can be done and we’re trying to change that message to get everyone referred through. There is a lot that can be done but, at the moment, many people are left dangling.”

Hidden disability

Rowe’s research, published in December 2013, found that around 60 per cent of stroke survivors experience some form of vision problem immediately after their stroke. This includes impaired central or peripheral vision or eye movement abnormalities. After three months, this figure reduces to 20 per cent of stroke survivors. But Stroke Association research shows that 26 per cent of stroke survivors aren’t getting the support they need with their vision.

The impact of this lack of support on someone’s life includes loss of confidence, impaired mobility, reading difficulties, collisions and accidents, and fear of falling. One female stroke survivor in her mid-40s, who took part in the research, said: “I banged into this lady because I didn’t see her and she was extremely rude to me, saying ‘What are you doing?’ But, you know, she didn’t realise I had these hidden disabilities.”

The problem is exactly this: visual impairment becomes a hidden disability for stroke survivors. This can have an impact on other people when it is not diagnosed or sufficiently communicated to patients. “We know there are individuals who physically make quite a good recovery from stroke and are discharged, but have hemianopia”said Rowe.

“And after a month, the Driver and Vehicle Licensing Agency (DVLA) says if you’ve made a good recovery from stroke, you can go back to driving. Often, stroke survivors themselves don’t always realise that they’ve actually got a problem: it goes back to communication.”

Following best practice can help stop this happening, said Rowe, who is based at the University of Liverpool. Five main points for eye heath and sight loss professionals come out of her research, called Care provision and unmet need for post stroke visual impairment, and published with the Thomas Pocklington Trust and the Stroke Association.

1. We need to better identify stroke survivors with visual impairment

Early diagnosis is key to this. If they’re able to, Rowe wants all stroke survivors to have a vision assessment one week after they’ve had a stroke. This means improving the integration of services so that each new stroke patient has a vision assessment by an appropriately trained person. Only 55 per cent of stroke units who were involved with this research had an integrated vision service.

Of the 548 stroke and eye team professionals surveyed, only 41 per cent assessed people in the first week and this was more accurate if it was done by an orthoptist. “Our recommendation in the acute phase is that we try and get more orthoptists in the stroke units,” said Rowe.

But all eye health and sight loss professionals have a role to play in this, especially eye clinic liaison officers and rehabilitation officers. “They’re vital for helping get stroke survivors with visual impairments referred and bridging that gap between patients and services,” said Rowe.

“It’s getting that assessment done in the first place, in an accurate way, and then referred on to the relevant services.”

2. Information for stroke survivors with vision problems exists and needs to be more widely used

A third of the eye and stroke teams questioned in the research said they did not supply visual impairment information to patients or carers. Dr Dale Webb, Director of Research and Information at the Stroke Association, said that this is not acceptable. “It’s critically important for any health condition that patients have access to information about screening, diagnosis, management and long term issues. There’s already a lot of information available.”

He points to over 60 factsheets for stroke survivors, including one on vision loss, available through the Stroke Association website. The charity also offers a helpline which eye health and sight loss professionals, as well as stroke survivors, can call.

3. There is a care pathway for stroke survivors with vision loss.

Only 46 per cent of health professionals who took part in the research said they used a care pathway for stroke survivors with vision problems. Yet, there is a national pathway for vision care in stroke survivors which is freely available. “We do already have a pathway developed by the British and Irish Orthoptic Society (BIOS) in 2013. Eye health and sight loss professionals can look out that care pathway,” said Dale.

Some local eye and stroke departments are also designing their own care pathway to consider local needs and allocation of services.

4. There are free rehabilitation resources for stroke survivors with vision problems

Eye-Search is a free online tool for people with visual search problems caused by brain injury, specifically hemianopia and spatial neglect (not being able to integrate people or objects on the left or right into your full vision). It aims to improve people’s speed and accuracy when they’re finding objects.

Read-Right is a downloadable programme which helps improve people’s reading speeds if they’ve had a stroke and experience hemianopic alexia. This affects someone’s eye movement when they read text, visit for more information.

5. Good practice post-stroke vision care exits around the country

This research showed that there’s a postcode lottery in terms of quality services for stroke survivors with vision problems. Lack of funding is the main reason for this - but Rowe is optimistic about building on the good practice that was identified. “We worked out that to have two orthoptic sessions a week at a stroke/vision service, our minimum recommendation, it costs in the region of £8,500 a year. There’s a lot of research in this area now and slowly things are changing.”

Dr Catherine Dennison, Head of Research at the Thomas Pocklington Trust, added: “This research crucially highlights how care can be improved and we would like those commissioning and managing stroke services to take note and consider vision to a greater extent.”

Key recommendations for good stroke/vision service

Essential recommendations

  • Two designated orthoptic sessions per week (minimum)
  • Flexible appointments
  • Formal stroke team training
  • Formal support from stroke physicians
  • Lay summaries
  • Open communication
  • Orthoptic assessment within one week of stroke
  • Named orthoptist on the core stroke team
  • Accessible leaflets
  • Standard referral form
  • Vision care pathway

Desirable recommendations

  • Maintained database of stroke referrals to eye clinic
  • Designated follow-up session in eye clinic
  • Orthoptist attendance at multi-disciplinary meetings
  • Referral to eye clinic liaison officer
  • Vision testing equipment on stroke unit
  • Rota of orthoptic staff

 

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