1. SIGHT LOSS AND SUBSTANCE USE: USERS’ PERSPECTIVES Prof Sarah Galvani Manchester Metropolitan University 6th November 2015 – SSA Conf, York Team: Dr Wulf Livingston, Glyndwr University; Hannah Morgan, Lancaster University; Dr Sarah Wadd, University of Bedfordshire

2. The study Co-funded by Thomas Pocklington Trust and Alcohol Research UK  Emerged from practice concerns  Exploratory  Multi-component 1. Existing data set analysis for prevalence data 2. Comprehensive literature review 3. Professionals’ experiences 4. Service users’ experiences  Data collection and analysis  Mixed methods

3. Research question What is the role substance use plays in the lives of people with sight loss?

4. Methodology  Purposive and snowball sampling  Flyers, facebook, linked in, twitter, via national charities etc  Face to face or telephone interviews  Semi-structured  Thematic analysis  Nvivo  Double coding – quality control check

5. Sample profile  17 of 26 responses met criteria  Gender: Male = 13; Female = 4  Age: average 53 years (7 people under 50)  Ethnicity: White English/British = 16; Asian = 1  Employment: Part-time paid = 4; Unpaid employment = 2; Students = 2; Retired = 3; "Full-time mum" = 1; Unemployed = 5.  Smoking: Never = 6; Previous = 6; Current = 5  Sight loss: 1-5 years ago = 4; 5-10 years ago = 3; 10-20 years ago = 3; 20-30 years ago = 1; 30 yrs + = 5; since birth = 1  Drug of choice: Alcohol = 7; Illicit drugs = 1; prescribed meds = 3; poly drug use = 6

6. Eight key themes  The impact of sight loss on their lives  Substance use as a cause or contributor to sight loss  Using substances to cope  The challenges of negotiating substance use with sight loss  The impact on others  Knowledge of other people with sight loss and substance problems  Services attended  Service access and improvements.

7. Substance use: cause or contributor  Cause: some participants told their substance use ‘caused’ their sight loss or believed so themselves  Alcohol  Prescription drugs  Diagnoses – malnutrition amblyopia or toxic amblyopia **  Contributor  Alcohol combined with smoking, poor diet, other drugs  “I had an alcohol problem long before my sight loss. Did the sight loss aggravate the alcoholism or did the alcoholism aggravate the sight loss? For me they’re two spinning balls, one egging on the other.” (Martin, 41- 45 years)

8. Cause  “...it was caused by [alcohol], they say, toxic amblyopia. I was told that... I shouldn’t drink or smoke because I’m an alcoholic so they said 'cut down as much as you can'. I thought, because I was hitting the booze very heavily,... if anything, it might get my liver…”. (James, 51-55 years old)  “The way they say amblyopia, I don't think it was malnutrition amblyopia, I think it was toxicity amblyopia, through the drink. Because obviously the drink was the one that poisoned me to that point.” (Charlie, 31-35 years old).

9. Substance use as coping mechanism  Provides group identity  “Numbing the pain” of sight loss through drug use  “Dulls the frustration”  Response to loss of professional and personal confidence  Loss of independence  Loss of relationships  Wish to “be crazy” – not done so in youth (sight loss when young)

10. Negotiating substance use with sight loss  Nine of 17 participants continued to use  6/9 reported reduced substance use  3/9 continued to use heavily  Taxis – delivery method for alcohol and other drugs  Avoiding conflict, eg. misinterpretation of ‘dirty looks’ in pub or bumping into people accidentally  Needed familiar pub layout and environment, e.g. knowing where furniture and toilets are

11. Summary  Combination of sight loss and substance use poses emotional and practical challenges.  Diverse range of experiences of service reponses  Some felt strongly that substance use had triggered/caused their sight loss  Some aware it was a contributor  Many accepted substance use a coping mechanism  Sight loss adds an additional challenge to negotiating continued substance use and to professionals supporting them.

12. More information  Alcohol Research UK website  http://alcoholresearchuk.org/alcohol-insights/alcohol-other- drugs-and-sight-loss-a-scoping-study/ http://alcoholresearchuk.org/alcohol-insights/alcohol-other- drugs-and-sight-loss-a-scoping-study/  Thomas Pocklington Trust website  http://pocklington- trust.org.uk/news/news/news_channels/alcoholandsightloss.html http://pocklington- trust.org.uk/news/news/news_channels/alcoholandsightloss.html  Contact me  S.Galvani@mmu.ac.uk S.Galvani@mmu.ac.uk  07775 680418  N.B. Pick up newly published Practice Guidance available at conference