Cause Conference - Mental Health and Triangle of Recovery

Patrick Cockburn
1. Living with schizophrenia
2. If the family doesn't look after its weakest members then what's the point in family
3. Feb 2002 - in Karboul when son was diagnosed with schizophrenia. Almost died trying to swim in freezing waters
4. schizophrenia is to mental health as cancer is to physical health
5. First year full of bad advice from care professionals eg allow son to go back to university
6. Lack of communication between care teams through lack of command structure - failure to check medications
7. Talking about condition helped other people to support Henry
8. When talking to others found lots of people who were also supporting mental health family members but rarely talking about it
9. Often people keep silent about all the support they are providing to others
10. Always hoped that the influence of schizophrenia would diminish even though not fully recovered
11. Wanted to put success and pride back into Henry's life
12. Wrote the book together to share from both their points of view
13. Writing the book helped to share what was in Henry's mind and what he was coping with internally
14. Henry - why should I trust people who lock me up. Bad relationships with psychiatrist who he considered jailors
15. The person going through the condition knows a lot more about the condition that the professionals often do
16. Supporting mental health involves the whole family
17. Why does people talk about mental health - sense of dread due to severity and unknown
18. Need to start talking to break down these barriers
19. People don't want their loved ones to be stigmatised or have ripple effects on their lives
20. People have a real lack of understanding of what mental illness actually is
21. Mental health needs to stop being a 'family secret'
22. Still a long way to go before job prospects aren't affected by admitting mental health
23. Henry now at uni - still needs a small degree of support eg someone waking him up
24. People don't want their loved ones to be stigmatised or have ripple effects on their lives
25. Only a step away from being able to deal with the discrimination
26. Get rid of culture of silence and we'll get rid of culture of demonisation
Prof Elizabeth Kuipers
1. There have been massive changes over the last 14 years
2. Improving relationships in psychosis
3. 220,000 people caring for someone with schizophrenia in UK
4. Need to focus on the person not just the condition
5. Caring relationships are mutual relationships - difference from paid carers
6. Families are a resource to get a picture of what is going on
7. Psychosis reduces social contact - shrinks friend circles
8. Provision of an environment where people can recover
9. Up to 40% of carers have clinical levels of depression
10. Caring relationships are mutual relationships - difference from paid carers
11. Carers suffer grief equivalent to that found in bereavement
12. Massive stress on relationships with even 10hrs a week of caring
13. Family reactions key to patient outcomes even when they were on medication
14. If relationship is difficult then burden of care is much more difficult
15. If something is long term waiting for it to go away is only going to be damaging
16. Warmth may be a better predictor of good outcome than criticism in some families
17. If you can step back and look at wider picture it helps
18. Carers need to get support for themselves so they can provide care
19. Stigma and shame can lead to reduced social networks for carers
20. Important for carer to have a confidante and to feel supported
21. Patient perceptions - service users able to perceive negative relationships and criticism accurately. Leads to patient anxiety and depression
22. People with carers have a better belief flexibility
23. criticism can be upsetting in depression. Increased negative mood on hearing critical comments
24. It takes longer to heal from a mental criticism than physical wound
25. Family Intervention (FI) helps with positive relationship building
26. Negotiate between carers and service users about confidentiality and risk information
27. Carers have needs of their own
28. Family members are as much a victims of severe mental disorders as patients themselves
29. Carer outcomes can improve if they receive support
30. Carers very much merit the attentions of clinicians in their own right
31. Clinicians are nervous about family invention and having carers present. Distress can be a good triage of when to involve carers
32. mentalhealthcare.org.uk
Dr May McCann
1. Nick Clegg - £120 million for mental health over next 2 years
2. Seems to be a focus on short term diagnose and cure therapies
3. Nick Clegg never mentioned the role of families in care or services for careers
4. National audit of schizophrenia
  1. Lack of medical physical care
  2. Waiting times
  3. inadequate information for and support for carers
  4. Not seeing role of careers in care
5. Positive for carers in NI
  1. Carer support services
  2. ImROC involvement of service user and carers - co production
  3. Development of mental health care pathways
  4. Strategy for best practice - triangle of care
6. Cause Carers Manifesto
  1. Carers equal partners in care
  2. Carers as supporters in recovery
7. Move for carers into advocacy to improve services - for their own loved ones and others
8. Triangle of care helps to support the person with mental health issue and the carers supporting them
Bill McKnight
1. Sticks and stones may break my bones but stigma really hurts me
2. Patients can tell between a professional who cares and one who can't. Mental illness not stupid
3. Too frightening to take a risk and the mountain ahead is too high
4. Loud Silence - book
Darren Gowdy
1. Health in Mind
2. Raise awareness and understanding of good mental health and to provide opportunities
3. When does the griving process end and we begin to move on with life
4. Libraries neutral and exist in almost every community area
5. 3 strands - Training, Reading, Information
6. Workshops
  1. Read aloud
  2. Beating the blues online CBT
  3. Mindfullness
  4. Bibliotherapy collections
  5. Knit and knatter
7. Partner Programs
  1. Mood matters
  2. Mental Health First Aid and Mental Health Awareness training
8. 1 yr extension to Jan 2016
9. Period of transition to mainstream project into LibrariesNI core business
Lu Duhig
1. Caring Together - Carers Together
2. Importance of working in collaboration
3. 3 stage of caring - how to change negative attitudes to carers
4. Family Intervention - finding hope and recovery
5. Sitting down with professionals about how to improve home life can give back hope to carers
6. Carers need recovery because they need help too
7. Risk - you cannot discover new oceans unless you have the courage to lose sight of the shore
8. Any improvement is a change but not every change is an improvement
9. What do people need to get on the path to recovery
10. Vision - we are stronger when we are together
11. Three way partnership of service user, carer and professional became the Triangle of Care
12. Alan Worthington - Triangle of Care 2010 1st ed, 2013 2nd ed
  1. Originally focussed on inpatient care
  2. 2nd edition for all care pathways not just inpatient
  3. Carers Trust website has full model
  4. 6 key elements
  5. 60 mental health trusts in England. 50 have signed up to triangle of care
  6. Scotland and Wales looking at model. Nothing in Northern Ireland yet
  7. Disconnected model
    1. Professional <-> service user <-> carer
    2. Everything passes through service user
  8. Triangle
    1. Everyone can share with each other
    2. Staff are carer aware
    3. carer support services
  9. Doesn't have to be costly to implement
  10. Originally focussed on inpatient care
  11. Self assessment tool
  12. Carer input and feedback needed to inform the accuracy of the assessments
  13. Carers need to be given information in a timely fashion
  14. Improvement plans need to be robust and have an action plan
13. Why is it important
  1. Produces better outcomes for service users
  2. Reduces stress for carers and allows them to continue caring without becoming ill themselves
  3. National accreditation scheme by Care Quality Commission as evidence of good practice
14. It takes time to change a culture
15. Be assertive on the change that you want to happen - be positive but keep asking
16. The burden isn't yours alone to carry
Martin Daly
1. Service user consultant for Belfast Health and Social Trust
2. Talking to someone you care for can be harder than talking to someone you don't know
3. Recovery may not work for everyone but we can make things better for a person
4. A service user is more than just their condition - they have wants, needs, desires
5. How do the professionals make the journey smaller
6. What is your recovery?
7. We need to look at betterment as recovery as an endpoint may not exist
8. When does the grieving process end and we begin to move on with life
9. You are a different person in time than who you were then.
10. What is the betterment for now?
11. Support enables people to lead better lives
12. Need to talk about the underlying issues not just provide medication
13. You as a carer needs to be heard as much as the service user is
14. Keep the door of communication open with professionals
15. Talking doesn't make you well but it makes you better
16. There is hope for everyone who is a carer and every service user that we can have the service that we need
17. Get into the room and have the conversations - don't sit outside
18. Stop using disclosure as a barrier. Open disclosure is possible
19. Peer workers being introduced into Belfast Trust
20. You don't need to be alone. You don't need to struggle alone
Question and Answer Session
1. As a carer what can we do to make professionals listen
  1. get acknowledgement that the carer is part of the care team
  2. With the new pathway coming in things should get better in the future
  3. Trust have taken the commitment to listen to carers
  4. Be persistent - keep on making your point (nicely). Don't give up
  5. Root meaning of listen is that action is attached
2. Are doctors promoting support groups to carers
  1. Early intervention services should be helping to provide these
  2. Professionals need to keep on providing information at all stages
  3. nidirect.gov website is going to have support services listed
  4. Make sure you ask the question and get them to give you the time to ask your questions
  5. Sometimes you need to think of the questions you need to ask
  6. Tell the professional what brought you to them today. Make sure your issue is answered
3. How do we combine physical health with mental health
  1. life expectancy 15 years less with mental health
  2. Gov starting to talk about mental and physical health as a combined package