There has been a lot of anecdotal evidence to suggest that deafblind people in the UK are more likely to suffer from mental health difficulties – but there was little systematic data to back this up until now.

Sarah Miller and Isabel Clare recently completed research that confirms that deafblind people are three times more likely to suffer from mental distress than the general population – and urgently need to receive support in this area.

Sarah's story

My mother was born with partial hearing. During my adolescence, she attended a routine optician's appointment and returned with a diagnosis of Usher Syndrome Type II, meaning that she would progressively also lose her eyesight. For my mother, it was a relief, after years of knowing something was not right. However, she was very fearful of the challenges ahead. The impact of her deafblindness eventually led to mental distress. She sought professional support, but found none.

My mother's experiences had a profound effect upon me. I found that much was known about mental distress from the experiences of people with deafblindness, but that knowledge was fragmentary and largely anecdotal. Very limited systematic information was available. At University, I used my undergraduate research project as an opportunity to explore the area of deafblindness and mental distress1,2.

The research

We devised a survey, using the General Health Questionnaire3 (retitled the 'How you feel' questionnaire), an established self-report measure of symptoms of mental distress, with some extra items and space for people to tell us about their own experiences. Deafblind UK translated the survey into each of their member's preferred format before sending them out. As in other research with people with communication difficulties, the response rate was low (20%), but the respondents were representative, at least in terms of age and gender, of the membership of Deafblind UK. We received 539 anonymised responses that could be used in part or in full. More than half were from older people, aged 65 years of age.

Our findings

1. Mental distress affects many people with deafblindness

We found that almost half the men and women in our sample (45.8% of 439 respondents) reported high levels of anxiety, depression, physical symptoms and/or social impairment. Using an established definition3, these men and women were experiencing 'mental distress', requiring more detailed assessment and, if necessary, treatment, by a health care practitioner.

2. Deafblindness is a risk factor for mental distress

Our findings showed that mental distress is three times more common among people with deafblindness than among the general adult population. It is more than twice as common than among other older people.

Our respondents reported experiences of social isolation, a loss of independence, and the impact of other people's negative attitudes. These are all likely to be relevant to their mental distress:

'I have a lot of problems…I am stuck here alone all daytime. I think about dying constantly'.

'I sometimes feel like a social outcast'.

3. Access to support from primary care is limited

According to our respondents, only one in three (177 responses) was receiving support, for mental distress - or another health care issue - from their General Practitioner (GP) or another primary healthcare practitioner. Only one in twenty was in contact with a mental health specialist such as counsellor, psychologist, or psychiatrist. In fact, formal (paid) support of any kind was rather limited, in both its range and its frequency. Overwhelmingly, support was provided informally by family members and/or friends.

4. Limited support is available around diagnosis

Fewer than six in ten respondents (527 responses) reported that they had received any kind of formal psychological or practical support at the time their deafblindness was diagnosed. Of the rest, a substantial majority reported that they would have welcomed such support, particularly from 'someone in the same shoes'.

'There should be much more help and support for those people recently diagnosed. I would not wish my experience on any one'.

What next?

At present, there are about 335 000 adults with deafblindness in the UK4. The findings of our small survey suggest that more than 153 000 of them experience mental distress and would benefit from further assessment of their symptoms. This is shocking. Complementing and extending existing guidance, the findings of our small survey lead to four main recommendations:

1. Improvements in primary care provision

Primary care providers, such as GPs and community nurses, should ask patients with a diagnosis of deafblindness, and indeed anyone with a dual sensory impairment, about symptoms of mental distress. GPs, in particular, have a crucial role, both directly, and through referrals to specialist mental health practitioners, such as counsellors, psychologists, and psychiatrists, in the assessment and treatment of mental distress. However, treatment for mental distress need not always involve specifically psychological interventions or medication. Practical support that increases opportunities for social engagement and physical activity (such as the provision of a specialist one-to-one support worker) can also have a powerful positive impact on mental well-being.

2. Improvements in secondary care

Specialist outpatient services (audiology, opthamology) should be aware of the psychological impact of a diagnosis of deafblindness and routinely screen for, and and ask questions about, mental distress. There is considerable scope for involving organisations such as Sense and Deafblind UK in the support of men and women who are newly diagnosed.

3. Training for social care and other providers in contact with older people

Since deafblindness is much more likely to affect older than younger people, support workers in health and/or social care services for older people should have training in identifying the signs of mental distress and 'good practice' in supporting access to primary and other health care services, as well as an understanding of the guidance to local authorities.

4. Greater awareness among people with deafblindness and their carers

People with deafblindness themselves, and the families and friends who provide so much of their care, should have user-friendly information, in properly accessible formats, about the increased risk of mental distress, and when and how to access assessment and support.

Over the next few decades, huge increases are expected in the number of people with deafblindness. While, at a national level, there is evidence of progress, greater awareness of the condition and its impact, and improvements in health care provision, are needed urgently. Otherwise, we face a future in which the experiences of Sarah's mother remain all too common.

Notes

1. This report is based on a paper by S.M. Bodsworth, I.C.H. Clare, S.K. Simblett, and Deafblind UK (2011), Deafblindness and Mental Health: Psychological distress and unmet need among adults with dual sensory impairment, British Journal of Visual Impairment, 29 (1), 6-26.
We are grateful to the journal's Editors for permission to write the report.

2. We are grateful to Deafblind UK and the Department of Psychiatry, University of Cambridge, for support with the survey, and to Annette Bodsworth. Isabel Clare and Sara Simblett are funded by the NIHR CLAHRC for Cambridgeshire & Peterborough.

3. Goldberg, D.P. and Williams, P. (1988), A User's Guide to the General Health Questionnaire.
UK: Basingstoke Press Ltd. We used the established conservative criterion of 'caseness' (a score of 4 or more out of 12) to define 'mental distress'.

4. Sense (2010), A Sense of Urgency.

5. Department of Health (2009), Social Care for Deafblind Children and Adults.
Local Authority Circular 6 (LAC (DH)(2009)6). London: Department of Health.