Tried to go to rehab, they said no, no, no…

Post date: 
Monday, 13 April 2015

The first, ever overview of rehabilitation services for people with low vision shows that they can play a very important part in people’s wellbeing – but access to services and manpower are lacking. Radhika Holmström reports.

 
Rehabilitation work is crucial when people lose their sight. It is what makes it possible for people to continue to live with dignity and with as much independence as possible. It can also play a key role in addressing the depression that’s frequently associated with sight loss. However, rehab services are increasingly under threat in the UK.
 
This is not a new concern, points out Jenny Pearce, Chair of the VISION 2020UK Rehabilitation and Low Vision Group. “Rehabilitation should be an early intervention, yet many people with low vision are receiving no help whatever.”

Reporting the problem

Pearce is a member and manpower of the advisory group for a report on this whole issue, commissioned by Thomas Pocklington Trust and carried out by researchers from the University of York’s Social Policy Research Unit. Carried out between October 2012 and September 2014 and focusing on local authority-funded services in England, this project aimed to produce the first overview of community-based adult vision rehabilitation services.  
 
Lead researcher Dr Parvaneh Rabiee explains: “The aim was to provide an overview of the evidence base and establish what services are actively doing to support people with visual impairment and what outcomes they might achieve. We also wanted to know the perspective of providers as well as service users – so our study has multiple strands and examines rehab services from different perspectives.”
 
Rabiee and her colleagues found that although there is not very much robust evidence to show the impact (or cost-effectiveness) of community-based services, it is still possible to demonstrate that they help people handle day to day activities and reduce the isolation many people experience as they lose their sight (group programmes are particularly good for this); though most are still focused on physical rather than social or emotional issues. 
 
However, a lot of service users – especially those with degenerative sight conditions – are not getting referred early on; in fact they could be waiting for up to four years, and only finally get a referral after some dramatic change in their condition or circumstances (which suggests that a lot of other people who would benefit from services are never being referred at all). And managers, unsurprisingly, are also extremely concerned about cuts in services. 
 
“There’s a lack of recognition of the role of specialist rehab and knowledge about the services,” Rabiee adds.  “Local authorities need to acknowledge the important role of specialist rehab, and make it available as early as possible, not as the result of a full social care assessment. And that is very much in line with the Care Act  – active promotion of independence, and recognising vision rehab services as a key preventative service. We found that a quarter didn’t follow the recommended practice,  so this research is very timely.” 

Report reactions

“What’s in the report is completely the work of the research team,” says Dr Catherine Dennison, head of research and dissemination at Thomas Pocklington Trust. “Across the different methodologies, adding up the scores meant they could triangulate different methods to come up with the recommendations for good practice. It’s the evidence base behind the recommendations that makes it a particular contribution – for instance, the lack of work tackling the emotional side of sight loss.” Thomas Pocklington Trust has also drawn out a set of campaigning points from the report, focusing on the paucity of provision. 
 
“I’m not surprised with the findings,’” adds Pearce. “It’s interesting, though, that this report flags up the usefulness of group rehab, because so much of current practice is concerned with individual interventions. One of the major impacts of sight loss is loneliness and isolation, so this makes sense.” She also points out that one major problem was getting information out of local authorities. “We need evidence; the facts and figures as well as the personal stories. This report gave us very good narrative and a very good picture, but not the ability to calculate cost per head – and that comes back to the fact it is locally driven. If there ever was a postcode lottery, it’s here.”
 
“It’s amazing that it’s taken this long for serious research in this area. Pocklington’s done a great job of sticking its neck out and funding it – but this is the first evidence-based piece of work on the topic,” points out Simon Labbett, who chairs the Rehabilitation Workers Professional Network and was another member of the advisory group. Labbett is seriously concerned that many people – including people in the sight loss sector – simply do not understand the role of rehabilitation. “At least eight of the 10 outcomes outlined in the Seeing It My Way initiative are things achieved by intervention and by longer-term support – and that means rehabilitation workers as well as ECLOs. Yet there are only around 550 practising professionals around the UK – in up to a third of local authorities that’s one worker or fewer; and lack of investment and training is even more concerning, because there are just two courses left in the UK. It’s in everyone’s interests to have a supply of skilled workers and there just aren’t the people to deliver this.”

Action from the sector

Labbett is urging the sector to take action. He adds:  “It takes two years to train up a professional and there aren’t any short cuts. I genuinely think local authorities might be more willing to appoint if they could find people to fill the gaps, but there literally aren’t the people any more.  I’m not sure the numbers are understood, even by people and organisations focused on sight loss. What will it take to see action from the sector's leaders?”
 
Key features of ‘good practice’ for vision rehabilitation services  
On the basis of this study, the key ingredients of a model of ‘good practice’ for vision rehabilitation services are: 
  • staff with specialist knowledge and skills
  • high quality assessment, including initial screening of referrals
  • personalised and user-led support
  • a range of training and support, including emotional support, counselling and group-based information and social activities
  • good access to professionals and skills outside the rehabilitation teams
  • flexibility to adapt to users’ abilities; timely intervention
  • regular reviews and follow-up visits
  • timely and accessible information about vision rehabilitation services
  • clarity among all health and social care staff about the aims, potential and limitations of vision rehabilitation services.   

Further information 

 

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