Combating Stigma

1. Combating Stigma In the context of Compulsive Hoarding Karen Smith

2. What, why and how? Stigma Hoarding • What is it? • What causes it? • How can we overcome it? • What is it? • What causes it? • How can we resolve the problems?

3. Definition of Stigma • ‘Something that detracts from the character or reputation of a person or group. A mark of disgrace or reproach.’ • ‘A mark or sign that something is not considered normal or standard.’

4. What causes Stigmafrom the perspective of an onlooker? • Lack of awareness or understanding about a condition or its effects on those involved. • Fear of finding oneself in a possibly unpredictable or uncontrollable situation.

5. From the point of view of a sufferer or carer? • Embarrassment – fear of what others might think. • Feelings of isolation and abnormality. • Thoughtless and insensitive language • Unhelpful media coverage

6. What can onlookers do to combat it? • Try to understand the sufferer’s/carer’s predicament. How would you feel? • Look at the person, not just the problem. • Become aware of conditions from good quality information, e.g. Books, Internet, Radio, TV. • Find out where help might be available, and support the sufferer if appropriate. • Think carefully about the language you use. Is it respectful, or insulting? Helpful or unhelpful?

7. What can sufferers/carers do? • Talk openly and honestly about the condition when and where appropriate. • Find good quality information about the condition. Ask your health professional. • Get in touch with support groups/organisations for help and support. • Use media if appropriate. • Get involved in training.

8. Compulsive Hoarding • What is it? • The acquisition of, and failure to discard, items which are, or appear to be, of limited use or value. • Living spaces sufficiently cluttered so as to preclude the activities for which they were designed. • Significant distress, impairment or loss of functioning caused by the hoarding.

10. Items frequently hoarded • Paper and card of all sorts. • Films, cassettes, videos, DVDs etc. • Packaging – empty boxes, tins, bottles etc. • Tools etc. • Electrical equipment – even if it is broken or dangerous. • Furniture • New items – ‘bargains’ • Animals • Human waste

11. Who Hoards? • People of any age, gender or socio –economic group. • Often live alone, and lead isolated lives. • Often unwilling/unable to acknowledge the difficulties for themselves or those around them, including neighbours. • Some continue to accumulate, some do not. • Some have partners and/or children, who can also be adversely affected.

12. Possible reasons • Fear of not having or being able to replace items. • Lack of ability to discriminate, prioritise, organise, delegate or make decisions. • Associations with the past, particular situations or people. Bereavement. • Fear of change. • Desire to be in control. • Not being able to resist a ‘bargain.’ • Compensation for feelings of insecurity or low self-esteem. • A genuine desire not the waste.

13. Results • Difficulties of maintenance - unsafe, squalid or unsanitary. • Important items cannot be found. • Storage in public areas - nuisance and hostility. • Social isolation for sufferers and family members. • Stale food - vermin infestation, unpleasant smells and/or food poisoning. • Perceived importance of possessions can lead to further acquisition, e.g. ‘retail therapy’, shoplifting etc.. • Behaviour problems in children

14. How can it get out of control? • Lack of insight – or unwillingness to take responsibility. • Isolation – nobody knows until it is too late. • Lack of coordination between agencies. • Physical impairment. • Lack of transport. • Perfectionism paradox. • Refusal of offers of help. • Procrastination. • Carers give in to keep the peace.

15. Emotional toll frustration shame anger anxiety depression sadness impatience helplessness guilt hopelessness embarrassment desperation bewilderment aggression bitterness isolation feeling misunderstood and overwhelmed.

16. Problems for carers • Lack of acknowledgement on the part of sufferers. • Lack of understanding on the part of professionals. • Patient confidentiality. • Impact not recognised or taken seriously. • Not knowing how or where to get help. • Scarce, or non-existent ,resources. • Problems addressed in isolation e.g. stress in carers, behaviour problems in children, complaints from neighbours.

17. Combating stigma • Documentary for Channel 4 – ‘World of Compulsive Hoarders.’ – May 2007 ( DVDs used in training) • Article in ‘Membership News’ – November 2007 • Interview for Radio Stoke • Woman’s Hour - October 16th 2008 • Conference - October 17th 2008 – ‘Make Room for Freedom.’ • Another interview for Radio Stoke • Invited on to the Jeremy Vine Show – Radio 2 January 2009 • Invited on to Radio Derby – January 2009 • Article in Take a Break – February 2009 • Involved in training of Clinical Psychologists and Mental Health Nurses – Staffs. University

18. Hopes for the future. • Multi-agency working party to cover Staffs and Shropshire to develop coherent care pathways. (Health and Social care, Fire and Rescue, Police, Environmental Health, Education etc.) • Website. • Single Point of Access. • Recognition as separate diagnosis (DSM V) • Voluntary organisation specifically devoted to Hoarding to: - • Provide information and support to sufferers, carers, professionals etc. • Raise awareness and understanding.

19. THANK YOU FOR LISTENING!