Helping pasients with ALS disease (Norway and

Sweden)Anna Hansen, nurse spesialist (palliative care and geriatry) in Skedsmo

municipality (Akershus county, Norway), master’s degree student, College in Gjøvik

Definition

• ALS (Amyotrophic lateral sclerosis);• MND (motor neurone disease);• Lou Gehrig’s disease (rare)

Prevalence of ALS

Norway • 2 persons per 100 000

inhabitants;• About 10 percent of all ALS

cases are inherited.;• Most of patiens are over 50

years ;• Men are affected more often

than women

Sweden • 2-4 persons per 100 000

inhabitants;• 600-700 persons with ALS disease in

Sweden;• About 5 to 10 percent of all ALS

cases are inherited.;• Most of patients are between 45

and 75 y;• Men are affected more often than

women

Shared responsibility for health and medical care• Government (hospitals- Ahus

(Akershus), Ullevål (Oslo), Sunnivas hospital (Bergen), Sørlandet sykehus (Kristiansand)

• Counties and municipalities (nursing homes, home care)

ALS and invasive ventilation

Norway • Many patients use NIV;• Only 5-10 % of all patients with

ALS choose to use invasive ventilation ..

Sweden• Non-invasive ventilation (NIV)

with a nasal, oral or facial mask is today a routine procedure.• Invasive Ventilation- almost

impossible (quality of life)…. (In Sweden there are no national guidelines on the management of respiratory failure in ALS)

Expenses for municipalitiesAround 1,500 000 nok every year

(approximatly 160 000 Euro) (Caregivers, nurses, occupational therapy, speech

therapy, physical therapy etc.etc.)

«Are’s life with ALS» Are is a young man. He is married with Yuki, and they have two wonderful daughters Yumina and Nora.

He lived and worked in Japan and he has been diagnosed with ALS 4 years ago and he chose to use invasive ventilation.

He lives at a nursing home..

Communication between Are and daugthers «Daddy via robot» http://www.nrk.no/magasin/er-pappa-via-robot-1.12282264

Norway: main problems

• Many different ALS teams around country, but they don’t cooperate with each other;• There is some «nevrological units» at nursing homes around the

country, but there is no «ALS» unit, with high professional competence in ALS;• Many hospices and palliative units can’t provide assistance and

palliative care to patients with ALS, because disease is «too difficult, too complicated etc.»;• There is no national quidelines about medical and palliative care for

patients with ALS

EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (u.s.department of health and human services)

• http://www.guideline.gov/content.aspx?id=38469

ALS supports groups. Norway

• «Alltid litt sterkere» («Always a little bit stronger») http://www.alltidlittsterkere.org/Pages/default.aspx• «ALS støtteforening» («ASL support group») http://alsnorge.no/

ALS supports groups Sweden

• Ulla-Carin Lindquist stiftelse http://ullacarinstiftelse.se/

Ulla-Carin Lindquist (1953-2004) Swedesh radio- and TV journalist, was diagnosed with ALS on her 50th birthday..

Ulla-Carin wrote a book «Ro utan åror» («Rowing without Oars»- en.)

«Ro utan åror» («Rowing without oars»)

Referances:- Bolmsjo, I.(2013) Livet med Amyotrofisk Lateral Skleros (ALS) I: Andershed.,

B., Ternestedt, B.-M., Håkanson, C. Palliativ vård. Begrepp og perspektiv i teori og praktik. Studentlitteratur AB, Lund

- Lingvist, U-C.(2004) Ro uten årer. Oslo. Gyldendal.- Nordgren, M.(2012) Ovanligt i Sverige att Als-patienter får permanent

respirator. DN http://www.dn.se/insidan/ovanligt-i-sverige-att-als-patienter-far-permanent-respirator/

- Skysdad, D., Tysnes, O.B. (2008) Kronisk, langtkommet nevrologisk sykdom.

I: Kaasa (red) Palliasjon. Nordisk lærebok. 2.utgave, Gyldendal Akademisk

Thanks to Are and Yuki