Practitioner Perspective

Medical Ageing

Support Services

Older LGBTI interface with hospitals and healthcare providers

30 minutes of Snapshots

• Aged Care “state of play” • Ageing population

• Federal policy changes

– National Aged Care Reform: Living Longer Living Better

– LGBTI Ageing and Aged Care Strategy

• Preventive health care for All

• LGBTI health care needs – Challenges start at data collection and go from there

– psychosocial and stigmatising issues

• Cases from Inner Western Sydney

• Unsolicited advice

LGBTI powerful as a lobby group

but not the same health issues

• Lesbian

• Gay

• Bisexual

• Transgender

• Intersex

• +/- HIV

• Some shared health issues

• Specific health issues pertinent to each group

• Big overlap with the general population

Australians living in RCFs 2010-2011

• 169,000, most were permanent residents, F 70%

– 77% aged >80y

– 57% aged >85y

• living in ~2800 facilities, (~186,000 places)

– Getting bigger: 45% have > 60 places

• ACFI entry tool

– No LGBTI component

• 76% were in high level care (often dementia/behaviour)

• Most residents leave by dying 91%

• Average length of stay 145 wks

• ATSI 24% aged < 65y

Implications of Ageing Baby Boomers

– LGBTI • likely to be swamped by Older with better ACCESS, advocacy, care

framework

• 2051 >500,000 LGBTI Australians aged 65yrs (GRAI 2010) vs 7.2 million Older General Population (ABS 2004)

– Benefit of Federally assigned services e.g. ATSI older care • CACP, Residential and Flexible care

– Benefit of centralised brokerage service adapting to altered needs with ageing

– Current unmet need will only increase as Old Old increases (await July Federal bill passage on more CACP, EACH etc)

• SLHD Camperdown ACAT

• Waiting time for HC not taking referrals (and anyway have to recurrently refer)

• Waiting time for EACH 1 year

• Waiting time EACHD, COPS 1 to 2 months

• Waiting time for CACP 6 to 9 months

• Waiting time for CVS language dependent, TARS

• Waiting time for Comm Nurses, Chronic or Connecting Care, HITH days

Looking Forward?

• While years of missed opportunities to improve older LGBTI health outcomes – Rarely too late to help

• Most older Australians live at home and want to stay there even if it is falling down around them – ~10% in RCFs

• Need 80 new RCFs built before 2020 to meet demand

• c/w 25-30 now in construction

• Access Access Access – Complexity of identifying and accessing services (LGBTI or not)

can be daunting

– Aged Care Gateway should help

• Most RCFS, and services are provided by not for profit sector – Inner Sydney easier now to find older LGBTI accommodation

• Federal LGBTI aged care strategy Oct 2012, HRAD – How will a Federal Liberal Gov respond?

Service providers in SLHD

• Uniting Care

Showing interest by surveying older LGBTI expectations

• Catholic Community Care

• Kincare

• ATSI (Wyanga and Aleena Aboriginal HC)

• Jewish Care

• COASIT

• St Basil‟s

• Chinese Australian Nursing Home Foundation and ACCA

• Sydney Multicultural Service (wider area)

• Polish Welfare

• Benevolent Society

• Presbyterian Care

• * Care Connect (Metrop outer west) – For ATSI/CALD/LGBTI

– 45 CACP/ 10 EACH/ 7 EACHD/ ComPacks/ Respite

Finding LGBTI Data

• Limited overall, and tricky to obtain but improving Up to 11 % of population

Lack of disclosure (various reasons) can impact on care

ABS data? Same Sex Couples data

Australian Passport since 2011 M: F: X (indeterminate/unspecified intersex)

NSW Court of Appeal May 2013 neuter or sex not specified (Norrie)

• SLHD Highest proportion of Housing NSW (DOH) residents, men home alone, alcoholism,

mental illness

and

High density of NSW LGBT population BUT – No rainbow flags at hospitals

– Hospital intake forms

• M, F, Indeterminate and unknown

• Med records:

– Requirement to list birth sex for DRGs

– No code for Gay, Lesbian

• RPAH, Balmain 2010-2013 aged >60yrs

– Indeterminate 0, not male 0, not female 0, unknown 0

– ACAT M F

• No protocol for LGBTI clients

My Older LGBTI experience

• Recognised ~80 people so must have missed hundreds

• Referred for wide variety of medical issues

• Very diverse socio-economic backgrounds

• Often alone, very mobile, remote or isolated from family

• G +/- HIV multiple grief, view themselves as “indestructible”

• Frequently current or ex smokers

• Gym users

• ~20% HIV positive

• MTF more issues, illicit drug use, more HIV, Hep B, C, STDs, financially disadvantaged, disorganised lives from childhood, depression/suicidal, medication issues, often cryptorchidisim, sexual identity not always constant

• FTM much more settled group, earlier decision, happier, working, stable relationships, usually completed SRS, generally well

• Intersex: Turner‟s, CAH, Klinefelter‟s, AIS and others

– Have better pathways, other issues

LGBTI wellbeing

4 times more likely to have ever been homeless

Twice as likely to have no contact with family or no family to rely on for

serious problems

More likely to be a current smoker

Twice as likely to have used illicit drugs

More likely to have had a chronic condition in the last 12 months

Twice as likely to have a high/very high level of psychological distress

Almost 3 times as likely to have had suicidal thoughts

5 times as likely to have had suicidal plans

4 times as likely to have attempted suicide

[Australian Bureau of Statistics (2007) „National Survey of Mental Health and Wellbeing‟ additional

unpublished analysis] National LGBT Health Alliance Media release 2010

RW MTF TG aged 76

• Born NZ, living alone in HNSW, on hormonal Rx, coped long term with L hemiparesis assisted by Family of Choice and CACP. Fought hard for independence. Used scooter.

• July 2012 Hospitalized after Fall with long lie: urinary incontinence, recurrent UTIs, cognitive impairment Rudas 14/30. C6 nerve root compression right upper limb weakness decompressed. Limited mobility HRT risks. Self steer wheelchair. Breast lump (benign). 4 failed TOV IDC at D/C

• Hospital Identity – DRG coding Male

– Front Sheet coding Female

– PT discharge referral: TG (associates with being female)

– Single room, access to unisex bathroom in Hospital

• Wanted to return home but needs assessed as too great for services

• Initially indicated would prefer Catholic RCF – Then advised that would be the last place on earth, had said it as a joke

• Social work meltdown: 39 entries in a 7 week hunt for appropriate accommodation • Some facilities only able to place in “male” room, beds no longer available

– Gender Centre input • Nil TG in HLC in Sydney and 12 TG waiting at home with support EACH

• Blue Mountains facility

• Uniting Care interest, effort to arrange EACH short term

– Single room

– TG sensitive facility

– Physiotherapy directed towards return home

Ways to get out of Hospital

• Independent and go home

• Family /Family of Choice/Friends either start to or maintain support

• Liaison with GP

• ACAT assessment prior to discharge for ACCR approval

– ACAT was divided into assessment and chronic care streams 2012

• ComPack (NSW Gov)

– 6 weeks post discharge support, free

– Referral on to other services after 6 weeks as necessary

– and COPS short term while waiting for other services to start

• Referrals to CN, HITH, Connecting or Chronic Care Program (NSW Gov), Homeless packages

• Referral to CACP, EACH, EACH D 3 to 9 month wait, HC long wait

• Rarely referral to private hospital (DVA or privately insured), or private community service eg Regal Nursing for DVA, Silver Service

• TACP up to 12 weeks costs ~ ~85% Pension (same as Respite)

• RCF for Respite or Permanent Placement

• Abscond or die in hospital

Leading causes of Death in Australia

Men Women (ABS March 2013 for 2011)

1. IHD

2. Lung and tracheal cancer

3. Stroke

4. Chronic lower respiratory disease

5. Prostate cancer

6. Dementia and AD*

7. Colon, rectal, anal cancer

8. Blood and lymphatic cancer

9. Diabetes*

10. Suicide

1. IHD

2. Stroke

3. Dementia and AD*

4. Lung and tracheal cancer

5. Chronic lower respiratory disease

6. Breast cancer

7. Diabetes*

8. Heart failure

9. Colon and rectal cancer

10. Diseases of kidney and urinary system

Strategies for Healthy Ageing

• Generic issues independent of sexual identity – Maintenance of healthy lifestyle

• Particularly lifestyle to reduce CVD, Cancer, Diabetes, Dementia and Depression risks – Good Diet

– Regularly exercise body and mind

– Stop smoking, safe alcohol use

– Reduce other drug use

– Maintain helpful and empowered partner, family or family equivalent

– Be lucky genetically

– Regular monitoring and support services (ideally stay local) • Good GP

• Health Screenings

• Dementia detection

• Sex, age specific issues – RACGP manuals preventive health care (red, green and silver)

Medicare Programs

• GP – Internal Practice Nurses, referral to Nurse Practitioners

– Enhanced Primary Care (EPC) Plan

• Up to 5 allied health referrals/year

– 45 year old health check

– 75 years and over annual health review

– Chronic Disease and Team Care management programs

• Diabetes, Asthma, Annual review 75+, Mental health

• Team plan (721, 731)

– Referral to Diabetes Educator, Dietician, and Exercise Physiologist group items (2007)

• up to 8 sessions/year e.g. Australian Diabetes Council Glebe, gyms

– Case conferences

– Teleconferencing and e-Health

– Pharmacist Home or RCF Medication Reviews

– Optometry 2nd yearly, more often if indicated for disease follow up

– Dental program (NO Longer!)

– DSP

– ACAT referral (anyone can call)

Medicare Local

Costs impact on Care and Access for Chronic Diseases

– For example Diabetes

– NDSS registration

– Diabetes Australia web site

– PBS Safety Net and registration 2013

– $354 concession card and co-contribution $5.90

– $1390.60 for everyone else and co-contribution ~$35.40

– Use ACAT

– ADHC

– Carer pension (equiv OAP)

&/or

– Carer allowance $115.40 per fortnight and supplement ~ $600 annually

– Medicare safety net

– Mobility Parking Scheme

– Taxi voucher scheme

– Pensioner hearing support program

– ENABLE

– NDIS?

L additional factors

• Breast cancer – More risk factors but lower screening rate

• Depression and Anxiety – Chronic stress

• Heart disease – smoking

– obesity

• Gynaecological cancer – Potentially higher risks related to smoking, obesity and misperceptions of risk

– PCOS

• Fitness – Increased overweight/obesity ↑ heart disease, cancer and premature death

• Tobacco – More likely to smoke than heterosexual women ↑ heart disease, cancer and emphysema

• Alcohol past more than current

• Substance use

• Intimate partner violence

• Sexual health – STD risk www.glma.org

G additional factors

• Homosexual

• Homosexual + HIV – Survival dramatically improved

– Fabulous annually updated guidelines with Australian input (ASHM) • Now has an Older Age section

– Aging: Proportion PLWHA aged >55 • 2.7% (1985)

• 11.2% (2000)

• 25.7% (2010) 2015 50% >50 USA

• 44.3% (2020)

– 11% PLWHA have Hep C

– 6% have Hep B

– 1% have both

MSM

• HIV/AIDS safe sex

• Hepatitis immunization (A and B) and screening

• Fitness (diet and exercise) – Higher risk of AN and Bulimia in young gay men

– Anabolic agent use

– Obesity

• Substances use/Alcohol

• Depression and Anxiety – Suicide risk

• STDs – Syphilis, gonorrhoea, chlamydia (all curable)

– HIV, Hepatitis, HPV, HS2

• Prostate, testicular and colon cancer risk may be higher

• Tobacco – Use up to 50%

• HPV (risk for anal cancer) www.glma.org

What Geriatricians need to know about HIV

• Service supporting Rx and S100 prescriber

• Other services assisting

• Case manager

– Cc reports

• Transmission mode / Risk factors

• Treatment history and efficacy

• CD4 nadir and current viral load

• Previous AIDS defining illnesses

• Malignancies: control and surveillance

• Status of IHD, T2DM, Lipids, OP

– Path service involved

• Other viral conditions

• Previous Ix for cognitive decline, MMSE or MOCA or RUDAS

• NOK, POA, EG

• Future accommodation plans

Bisexual

• Have the dual risks from

• Heterosexual male and MSM

• Heterosexual female and L

• Partner disclosure

• GP disclosure

Managing Older TG

• Treat with respect

• Identify who is managing and monitoring hormonal Rx, Current Rx (PBS, other), costs

• Clarify medical management history

• Clarify what surgery has occurred (if possible)

• Check for past complications or contra-indications

– DVT/PE

– Cancer

• Identify treating Psychiatrist and review mental health

• Check associated conditions particularly

– HIV, STDs, Hep B and C

• Preventive health assessments

– Higher risk of Diabetes

– Especially smoking and risks

• MI risk in MTF on hormonal Rx (study of 321 TG: Wierckx et al Abstract P969 2013 European Congress on Endocrinology)

– Relevant to natal sex

– Relevant to past and family history

• Cognition and understanding

– How coping in Transphobic society?

• Support and Accommodation issues

I

• XX – CAH (virilise) commonest

– progestin induced virilisation

– mother producing testosterone in pregnancy

– Aromatase deficiency

• XY – AIS (unable to metabolise androgens) commonest

• Complete CAIS (vagina but no uterus, cervix or ovaries), partial P, mild M

• 5-ARD deficiency (unable to convert Testosterone to DHT)

• CAH (feminise)

• Persistent Mullerial Duct Syndrome PMDS appears male but has uterus and fallopian tubes

• Anorchia gonads lost after week 14 gestation

• Gonadal dysgenesis

• Hypospadias (often altered Testosterone metabolism) range

• Others – X0 Turner syndrome, Triple X (XXX), Klinefelter‟s Syndrome (XXY) and others

– Mosaicism and Chimerism

PH MTF TG aged 78

• Home alone private rental inner west Sydney

• Isolated from all family except amazing daughter

• Completed MTF SRS, not on HRT

• Formerly welfare work in TG

• Ex smoker, solid ETOH, still driving

• 2 yrs Cognitive Decline 2723/30 resistant to placement

• CACP struggling to support at home

• OH&S issues

• Frequent hospitalisation: falls, declining mobility, recurrent

pneumonia, multiple joint replacements

• Referred for Neuropsych Asx to advise on capacity, mood, insight

– May require Guardianship

Whether in hospital, at home or in RCF care

• Identity and Rights

• Privacy • Particularly if changing GP

• e-health, Telehealth

• Single room, en suite

• Personal care needs

• Restraint and the Aged Care Act 1997, Charter of Rights

• If Dementia also present (the person or other patients)

• Service provision at home

• Accommodation issues in RCFs

• Some encouraging signs • Care Connect education and support

– My Life My Choice My Way

• Uniting Care surveying LGBTI older re needs

• ACON LOVE project

• CVS (Metro Sydney via ACAT 280 for 400 CALD, others for English speaking)

• RCFs with broader view

– Stanmore , Annie Green Court, Charles Chamber‟s Court, Vincentia

Frederic House

Evolving Better Care

• Interface between hospital and community • Staff moving between sites

• e health and the Firewall

• Centralised well advertised single intake to improve Access

• Powerful Advocacy Group, with single National website • Linked updated interstate service databases

• COTA and other organisations to provide Links to LGBTI sites

• Better links to service providers

• Computerised to reduce duplication • Access

• Shared models of care, with standards linking funding to outcomes

• Better Patient self care

• Better surveillance and quality control

What works best?

• Controlled allocation and individualised brokered services

• Assessment and planning ahead of need

• Universally available free updated Guidelines of care for GPs, RCFs, hospitals, clients – Sharing resources rather than remaking the wheel

– Role for Medicare Locals?

• Recurrent cycles of education that are CME registered at low or no cost for RNs, RCF staff, personal care staff, GPs – Inner West Sydney Medicare Local

• developing HIV shared care and GP training

• Trying to encourage more S100 trained GPs

• Big concern re falling numbers of GPs prepared to visit RCFs

• Keen to open channels

• Built in client ongoing feedback system

• Government directives re in-hospital care with KPIs tied to funding

• Ongoing monitoring of unmet need