Confusion and depression is not being dealt with, says new research
In new research (1), almost 50% of people with combined deafness and sight loss were suffering high levels of psychological distress. At the same time, services meant to support them showed a lack of awareness of their needs and often failed to understand the implications of their sensory loss.
These are some of the findings to be presented at a major event on 30th June at Birmingham University. At a conference, Acquired Sensory Impairment – Confronting the challenges faced by older people, over 120 people from housing, health and social care will hammer out solutions after researchers found that those with joint sensory loss were struggling to access the services they need. The conference is a joint initiative of Thomas Pocklington Trust (2), Sense (3) and the Wilberforce Trust (4).
Presenting the new study, commissioned by Thomas Pocklington Trust, researchers from the Universities of Cambridge and Birmingham will reveal that communication with those with dual sensory loss was poor. There was widespread confusion about what services were available or how to get them. People felt isolated, lacking in control, and depressed. If they were admitted to hospital their experience was mostly negative.
- 65% had daily living and practical problems.
- 55% had communication difficulties.
- 40% had access to information difficulties.
- 36% had mobility issues.
Against this, the research revealed that people suffering dual sensory loss find clever solutions to their own problems. Many showed remarkable resourcefulness and determination. For example, they added amplifiers to their phones, had strategies for travelling – ringing ahead, asking people for help, using taxis - and found a sense of community amongst religious groups. Courses were also important, both for those with sensory loss and their partners and carers.
“Resourcefulness is high among those with joint sensory loss but people are coping despite the support services rather than with them,” said Ron Bramley, Chief Executive of Thomas Pocklington Trust.“ Better training and better communication are vital if those in housing, health and social care are going to improve people’s lives.”
Among the speakers at the conference:
Alison Bennett, from Sense, will say that although new standards for training in sensory services are due to be rolled out through 2009/2010 there is more work to be done. There are fears that until that work is done they may not be wide enough and may limit what’s possible.
Mary Bairstow, Vision 2020 UK, will call for a widespread shift from the attitude, “diagnosed and dumped” to one of “fair access to care,” urging greater collaboration between social services, medical, ophthalmologists, optometrists, opticians, occupational therapists and teachers and trainers.She will explore the current government policy of personalisation, where people can choose how to spend their own budget for support services.
A report from the conference, with practical actions designed to meet the needs of people with dual sensory loss will be published at a later date.
Liz Duncan, Head of Acquired Deafblind Services at Sense, said, “Acquired dual sensory loss is not uncommon. This conference aims to understand the needs of people with such sensory loss. With appropriate resources effective responses to these needs can be significantly further developed. We want to inform practice across the public, private and voluntary sectors.”
Said Tony Aston, conference chair and Chairman of Guide Dogs for the Blind Association, “This important event will highlight what can work and the priorities for services that touch the lives of people with dual sensory loss. Pocklington, Sense and Wilberforce have set the scene. Now it’s up to local authorities, voluntary organisations and the private sector to make a real difference to people’s lives.”
For more information contact:
Sandeep Shah, PR Officer, Sense 020 7014 9379
Out of office hours media enquiries 07770 580 843
Editors Notes: On 30 June, the Department of Health reissues statutory deafblind guidance for local authorities in England. When it was first issued in 2001, the guidance caused an upsurge in services provided to the deafblind, but in 2006-07 Sense identified a drop in support, especially for communication. The Conference will urge local authorites to use the reissued guidance to kick-start another incrase in the provision of services.
1.“The needs of older people with acquired hearing and sight loss” was commissioned by Thomas Pocklington Trust and carried out by researchers at VICTAR, (University of Birmingham) and the University of Cambridge. It analysed two existing sets of data relating to 609 older people with hearing and sight loss that had not previously been analysed, and added twenty in-depth individual case studies. A summary of the findings can be found in Research Findings No 23 and a more detailed report in Occasional Paper No 20.
2 Thomas Pocklington Trust is a charity which aims to improve the quality of life of people with sight loss. It is a leading provider of housing, care and support services for people with sight loss in the UK, and is a major research and development body.
3 Sense is a national charity that has supported and campaigned for children and adults who are deafblind for over 50 years. It provides specialist information, advice and services to deafblind people, their families, carers and the professionals who work with them. They run services across England, Wales and Northern Ireland and employ 2,000 people, most of whom work in services directly with deafblind people. The patron is HRH the Princess Royal. Further information can be found on Sense's website, www.sense.org.uk.
Sense is marking Deafblind Awareness Week on 22-28 June with a truly worldwide web of initiatives including a series of filmed documentaries, a virtual gallery to experience deafblindess and a portal to give a sensory makeover to all web applications. The charity has also collabroated with the celebrity photographer, Dave Hogan, to capture images to represent life for deafblind people today.
4 The Wilberforce Trust offers supported housing schemes as well as providing domiciliary care and support and rehabilitation services to individuals living within their own homes. Further information can be found on their website www.wilberforcetrust.org.uk.
