The caregivers story

Editor's Notes

1. Today, I’d like to share our latest white paper…
2. Carers can be defined as …
3. Reality = more Today discuss true impact Healthcare Ind = unpaid army that glues it altogether Pharma = potential catalyst for success. Doctors = partners turning treatment plans into reality Patients = Everything
4. Asked Sue / one of the carers that feature in our research / describe typical day Husband dementia, posterior cortical atrophy / blind & immobile / totally reliant 6.30 – Get up – tea + snack - Prep med 7.00 - Feed - meds - physio legs 7.30 – Care @ Home worker – showered - incontinence pads - dress – bed - dry hair - clean his teeth 8.30 – MY BREAKFAST – Prep lunchtime meds 9.00 - 10.30 – House chores, inc work 10.30 - 11am – Wake + breakfast Working and it starts again Day / Day / Relentless But = CRITICAL care Compare vs minutes w. Dr
5. Value of this care == value of public health spending [pause] Unpaid army vital to health systems
6. … 140 people in this room = a carer @ point in life Don’t will prob need one. Significant population / Broad knowledge
7. Carers > significant impact > outcomes COPD Study in 2012 comparing carer impact (374 patients) Increased adherence Increased smoking cessation 66 had no caregiver / 158 spouse caregiver / 150 non spouse caregiver
8. Chronic Kidney Disease Reduction in Phosphor Serum levels patients with carer vs those without Indicating reduced phosphate intake Improved diet 72 in study – 36 with carer vs 36 without
9. 3rd study / Comparing patients with and without a carer With carer 5x more likely to complete a self-management programme We hypothesized that Care Transitions Intervention (CTI) participation would be equivalent for the 2265 coached patients without a family caregiver present at recruitment, versus the 482 patients with a family caregiver. After adjusting for significant covariates, patients with family caregivers were more than 5 times as likely to complete the intervention as patients without family caregivers (AOR = 5.48; 95% CI = 4.22-7.12). Men with family caregivers were nearly 8 times as likely to complete the intervention as men without family caregivers (AOR = 7.94; 95% CI = 5.26-11.98).
10. Of course, can = exceptional Geoff T2 Diabetes / lifetimes of bad habits Ambivalent to risk of T2 / Witnessed foot amputated Sons set about curing bad habits and beating T2 Barley mobile / crutches > 100 mile bike ride / hikes across glaciers / parachuting … Sue 4 Anthony Carers supporting adherence, lifestyle, diet Ian & Anthony CLEAR – Carers are vital force in healthcare But, are they recognised?
11. Busy 6 months 10 carers – globally 4 experts / like Anil
12. Robust 2nd research Including, journal articles, reports, case studies and books
13. Testing, relentless, inspirational, rewarding Confusing Research est 4 key steps on carer journey Guidance = recognition + info Partners = patients + HCPs Strength = support + well-being Me = Not losing yourself + learning through experience
14. World = upside down / when needed most Patients quicker – symptoms, referral, right treatment = better Same with a carer Quicker inform / support / help Quicker they help patients
15. Shazia // just heard + on stage with Matt + office easter Amazing – determination, empathy + insight @9 – Mum, Parkinsons Cook, clean - look after Mum - toilet, wash, dress Administer meds / liaise HCPs / navigate complex system Learnt soo much … herself
16. Shazia not alone / entering unknown … (2100 carers) …
17. Spoke to Emily… … 57%.... 86%... First barrier to overcome = IDENTIFICATION
18. 3 levels – recognise carers Env – raise awareness society OR 4 us, in TAs we work in (where carers = critical) Gateway – critical moments – open door to help, support, info. ie Dr’s Surgery, Waiting Room, Hospital ward Patients condition change, so does the role of carer, need identifying + supporting throughout
19. Once identified – need support Shazia She needed disease information How to care 4 mum inc emotional support Navigating confusing, complex healthcare system @9 cook, clean,
20. … So in turn, can start providing effective care
21. Not only redefine relationship with the patient Also begin partnership HCP
22. Lina – Milan – Carola – mentioned earlier – culture of family care Husband - bronchitis many years > COPD 3 yrs ago Lina looks after husband + medication + oxygen therapy MicheLEY stubborn Michele was a smoker.
23. High-level themes, based on research group + secondary research Closer – due to increased care, support, empathy, & shared determination Different - Shazia, US Carer commercial Worse –  obligation, exhaustion, stubbornness, & frustration
24. High-level themes, based on research group + secondary research Closer – due to increased care, support, empathy, & shared determination Different - Shazia, US Carer commercial Worse –  obligation, exhaustion, stubbornness, & frustration
25. Identified 2 potential models of care Lina “mother to a child” MicheLEY… stubborn & unhelpful [Heard translator] relationship strained + COPD deteriorating 2nd model Karen FT carer Yvette (chronic pain + mobility issues, arthritis, anxiety, depression) Karen + Yvette = team, active roles, shared responsibilities and shared goals Not naive mother > partner Encourage, support, coach > shared-care approach & goals and engagement + empowerment + partnership
26. Many heard MAP – but perfect Biggest barrier in Schizophrenia is compiance As heard, carers can play key role Proff Kissling Patient AND carer education Carer education was not just rebadged – bespoke Digitised approach Clinicial study, 18 months, 173 patients, 58% reduction in hospital referrals
27. Met Sue / Husband has posterior cortical atrophy – DEMENTIA / typical day HCPs under pressure See patients briefly vs day & night, Sue described Imagine knowledge HCP + proximity of carer
28. … all parties Aparna… Leane Diff PoV Review of 34 studies… Respect, or lack of
29. 3 ways … Carers = “huge source of evidence” Real insight into well-being
30. Heard Anil Before… Supported by / 2015 INCLUDED
31. Confidentiality, but HCPs AND PHARMA need …
32. … Exchange information Work collaboratively towards shared goals
33. Consider number of carers / impact on patient outcomes Vital they are to healthcare Stronger they are / better care provide
34. Leanne finding tough / represents many carers Mother + Brother have Schiz 3 children Describes coming home, closing the door to her children
35. Leanne lost friends Not atypical … Bleak picture
36. Leanne = lonely vs Floris / wife MS x 2 / daughter / 2 months off work Love & support from friends and family Blog www.platform.ms = energy
37. Aparna / daugher / borderline cerebral palsy Works FT Exhaustion, dehydration, back issues, gynaecological issues Carers neglect health / prioritising patients
38. Aparna suffering / daughter missed vital physio sessions Very simple … Research group – interventions can work - meditation, counselling, exercise, even tools like Nike+ Stronger Army = Stronger health systems
39. Find yourself in caring University of life – true in caring
40. Martha – final carer 50, Kenya, Late Mother Diabetes > cancer > Stroke > Immobile Unable to eat, talk, wash, dress Relied almost entirely on Martha. Caring = tough But Pride done everything could for mother
41. Carers can become … Disease understanding / knowledge of treatments and critical view of services Inner strength + empathy Shazia – qualified > great campaigns
42. Beth Britton / heard earlier / Innovated around nutrients + intake / Dementia Care / NHS and Care Quality Commission Nebeela / Dev / Autism Kenneth Austin / Epilepsy
43. Call to action for the broadest healthcare industry … Lets learn from their experiences Who wouldn’t Shazia perspective on a patient support??
44. Its time we stopped ignoring carers
45. Once recognized They offer Insight to the patient, and beyond into a disease area and treatments Expertise to help deliver treatment plans Help us win the moments that matter
46. Identify + Inform Support build partnerships with patients and HCPs Find strength & perform effectively Recognise the value So that ….
47. To improve outcomes for all …
48. Matt Eagles and Shazia backdrop