1. Learning from Carers of those who Self-Neglect
Jill Manthorpe Director, Social Care Workforce Research Unit, King’s College London

2. BBC TV My Hoarder Mum and ME
Great website – checklists, help for family, resources, etc
Help for Hoarders

3. Things to consider Learning from carers
Update on policy and practice developments on self-neglect & carers
Overview of recent research findings
Evidence from inquiries and reviews
Skill sharing about outreach with carers of people who are reluctant to take up help.

4. Ring the carer (family) !
What to do if care workers won’t go in?
How can hospital at home work if the bedroom clutter is a fire risk?
What to do if sores are getting infected environmentally?
What to do with neighbour complaints?

5. Not all family are carers but care (SAR, Adult C; South Tyneside)
No record that any agency involved in the care and support of Mr C contacted his family during the period covered by this SAR.
No indication that Mr C’s family contacted any of the agencies providing care and support.
Niece says tried to ring GP after tel call from Neighbour which caused her concern. Unable to locate GP (spelling?) so no contact.
Mr C phoned niece in Wales weekly but unplugged phone otherwise (para 5.66).

6. Think carers’ role through MCA and Lasting Power of Attorney
Increasing numbers of LPAs for Health & Welfare
Also best interests decisions
Little practice research evidence – need to share experiences

7. Approaches to working with self-neglect - carers as informants
What is the change & what the problem (for whom?)
Others’ involvement & interest (GP treatment)
Rel. to safeguarding (grey)
Check about children
MH/MCA routes
Use of Environmental Protection Act 1990 & Public Health Act 1936

8. Signs of a hoarding disorder – people may…
keep or collect items that may have little or no monetary value
find it hard to categorise or organise items
have difficulties making decisions
struggle with everyday tasks
become extremely attached to items, refusing to let anyone touch or borrow them
have poor relationships with family or friends
Good resource : NHS Choices

9. Ask about the ‘Hoards’ of stuff
Is this scam abuse?
What will the person say?

10. Could self-neglect relate to household’s alcohol?
Judgements: ‘Squalor, chaos and feelings of disgust: care workers talk about older people with alcohol problems’ LB Karlsson & E Gunnarsson (2017) Ageing & Society

11. Effects on families: research findings on hoarding
Stigma
Quality of Life- distress
Breakdown of family relationships - conflict
Rallying round
Lack of support

12. Varied contexts of self-neglect
Living in very unclean, sometimes verminous, circumstances;
Keeping not managing pets++;
Neglecting or neglectful household (6 of MP-S’ SARs of self-neglect lived with other people);
Eccentric behaviours or lifestyles;
Poor self-care & personal hygiene (Halliday et al, 2000).
Use checklist as guide (see Help for Hoarders

13. The ‘barometer’ of pressure ulcers
Often seen as self-neglect but can be neglect or not realised
SCRs/SARs show some inconsistency in practice /NICE following
Escalation variable
Disputed ‘territory’
Good sharing focus

14. Finally – hindering and helping
Learning of practitioner skills in gaining access
Not all ‘carers’ welcome support, some resist – for various reasons
Importance of discussion with wider team to identify risks and strengths
Sustained carer support services

15. Knowledge low: worries high
Counting: Don’t know incidence
Cause: Some divisions about whether it is ‘intentional’ or not
Competing priorities
Conflict
Confidence: low

16. Role of key worker/case manager with carers?
Non-judgmental
Listening ear
Risk supporter (AT potential)
Support with helping approaches
Link to groups & telehelp

17. What skills are needed to help carers with family self neglect
Knowledge of self-neglect and legislation framework
Assessment skills
Relationship building skills & client centred approach
Effective multi-disciplinary & multi-agency working
Source S4C 2013

18. Emerging practice – LSAB considerations
Multi-agency panels to focus on cases and wider system communications and responsibilities (sometimes under/link to safeguarding services)
Updating policy and best practice guidance and escalation protocol
Collecting local numbers and stories

19. Thank You
The Social Care Workforce Research Unit receives funding from the Department of Health & Social Care and the NIHR.
The views expressed in this presentation are those of the authors, not necessarily those of the Department of Health & Social Care and the NIHR.