People with muscular diseas, Estonian experience.

The Estonian Association of Muscular Disorders (EAMD) board member-Jüri Lehtmets

11th annual Nordic ALS Conferenc21-23 August 2015 in Jurmala, Latvia

• Greetings from Estonia. • Last time I meet some of you on 6-th annual Nordic

ALS Conferenc in Haapsalu 20.-22.august. 2010

Who I am• My name is Jüri Lehtmets.• I am 28 years old • Right now i study in TUT Public

Administration in MA. • I play el.wheelchair hockey 10.years.• I am alsou EAMD boardmember• I have DMD what have same kind a problems

as ALS have especially breathing.• Prevalence: 2 per million.• DMD life expectancy is around 30. I am

oldest in Estonia and looking forward what life brings, because i know the 50 years is alsou achievable.

The Estonian Association of Muscular Disorders (EAMD) I

• Non-profit organization which aims to improve the living standards of people with muscular disorders.

• There are several means to achieve this purpose:

- providing our members with advice and communal support.

-supplying information about ways to cope better with the disorders, organizing social events.

-giving our members the chance to take part in the association’s coordination activities.

-Good humour is a daily part of our activities and everyone is accepted into our big family with regards to his or her uniqueness.

The Estonian Association of Muscular Disorders (EAMD) II

• EAMD does not acknowledge a ’too weak’ physique, rather we consider faulty living arrangements as the cause of physical difficulties. To better the lives of disabled people we collaborate with the Estonian Chamber of Disabled People (ECDP), the Network of Estonian Nonprofit Organizations (NENO), Estonian Patient Advocacy Association (ECAA).

• We plan and realise projects that help to increase society's tolerance towards disabled people and raise the self-esteem and self-awareness of people with muscular disorders. Several progressive ideas, such as the movement for independent life and the practice of electric wheelchair hockey, have come to fruitition in Estonia.

• We are open to suggestions of cooperation with other organizations from across the world. For further information, contact us at els @ els.ee.

Treatment of ALS in Estonia I• No special clinics or hospitals for PALS • A slight experience has concentrated to neuro-logical

departments of biggest clinics in Tallinn and Tartu.• Example 15 years we have had Estonian Genome Center.• Karin Rallmann with Mart Saarma have a project to find

way how to slow down ALS.• Medical care: Rilutek is 100% compensated by state.• (2011).• Doctors know it well, but it have many bad side efects

like flow of saliva. • Few solution to cope that kind of bad side efects.

Treatment of ALS in Estonia II• Helping with Breathing- - Change to use Ambu when ventilatorr does not work

or want train coughing.- Cough assist only in Tallinn hospital.• Ventilator management:• Bi-pap is offered for free in case of neuromuscular

disease via two clinics in Estonia – in Tallinn and Tartu.

• As living at home with invasive ventilation (with respirator) is difficult (due to non-adequate services), persons choose living 24 h with bi-pap or ending life.

Treatment of ALS in Estonia III

Food management:• Feeding tube: tube food is not

compensate by the goverment and is often too expensive for PALS.

• ALS patient nutrition counseling are inadequate.

• Example to simply are used narrow tube what is for special food not wide tube what is for blended home made food

Services and Programmes for People with ALS/MND

• ALS Counselors?- we have handbook for PALS and families, webpage with ALS forum but no counselor and regular meetings for ALS patients.

• Estonia have Ratified UN Convention on the Rights of Persons with Disabilities.

• In Estonia-Main problem is that law sayis that family members have duty to take care of family members and goverment and municipality help them very little.

• Alsou there is no laws about homes accessibility. You can build totaly unaccessibel houses with no penalty.

Social and psychological support for patients with ALS/MND

• Local government has a duty to organize financing home-nursing. Usually there is no finance to do it. Difficulties with finding nursing stuff.

• PAS for patients with ALS/MND.-Gives change to live indenbendent life in and outside home.-Municipalities give littel money to pay PAS(example Tallinn usualy 40h and 3,13€/h) , but person you have to find totaly by your self.

-But one person gives to few work hours that PA would get even social insurance.

- Helpific.com – platform to find volunteers as helpers, but usual work on one time events not daily or weekly.

- Usualy are still helpers family members.

- So In Estonia is very hard find the way live independent life at home without struggle for your love ones.

Social and psychological support for patients with ALS/MND

Pension- 301€ per month + social suppoort 53€ per month, but this is soon changing. As soon as a PALS is not able to work he will go early retirement.

REHABILITATION:• Physiotherapy- Physiotherapy according to the rehabilitation plan.Not sufficient for PALS and

reaching therapies is difficult in small places and basicaly 15 day-s a year .

• Occupational therapy-help arrange things at home and find a way to hold you active. In Estonia only at centers usualy no home visits.

• Visiting that kind centers is very stressful, because you need special transport and traveling is tiring. For ALS patients home visits are very needed.

• ALS-a health care team approach.- PALS co-ordinator is needed to solve new and emerging issues and not apply to 10 different places.

Social and psychological support for patients with ALS/MND

A small amount of expenses are paid only if specially approved (some medicine, transport, pampers, toiletries).

Problems start with expensive aids – electrical wheelchairs, elevators, el. beds, computers, cars. (PALS cannot wait next financial year(s) when money is finished or has no energy to organize.)

DEVICES for patients:• El.wheelchair-10% by yourself. Release to Delivery takes long time.

Hard to find specialist who ready to make it totaly ergonomic for you.

• Hoist- 50% by yourself and are quiet costly.

• Communication aids:• The Estonian speech-synthesis program, which is freeware.• No LightWriter or MyTobii on a list of partly or fully compensated inva-

aids. • Speech therapist service is not on good level in case of ALS. • Tobii I, Tobii PCEye Go is alsou in Estonia availiable but is not in Estonian

and copensated by the goverment. You could ask approval from special commission, but then you need alsou spetcialist recommendations. So many paperwork.

Social and psychological support for patients with ALS/MND

MEANS OF TRANSPORT:Adapted cars- • VAT return. • 50% co-finance of the adaption (hand-stearing)Disabeld transport- every municipality different example Tallinn 4 free 30.minutes rides a month+work transport circles.Publictransport-train totaly accessible, but buses are little problematic.

Social and psychological support for patients with ALS/MND

• ACCOMODATION:

• Adjustments in the home-depends of municipality.

• Local government has duty to pay for adoption. Often there is no finance to do it.

• Relocating from not accesible housing is in Estonia problematic. No support from municipalities and few accesible households were to move and alsou waiting lines are long.

Fundraising exampel IBC in Estonia• Before the conferents I read a article that thanks to last year Ice

Bucket Challenge money there are allready breakthrou in research. It is big news because i remember 5 years ago many specialist admit that they have just assumptions what causes ALS now we have littel more clue what cause ALS.

• Ouer organisation got 101917,99 eurot donation from 6939 persons.

• We have used it to support ALS patients with equipment and services what they need through the application and alsou organised a summer camp for ouer organisation members.

• We have ideas to start ALS counselor service and make estonian MyTobii like computer. That money helps us plan better how to make it happend.

• Fundraising is quiet new thing for ouer organisation because usual we depend on project money.

• We recruit and retain donors/volunteers through social media, internet homepage and alsou we opend donation nr. to make donating easier

Conclusion• EAMD is Non-profit organization which aims to improve the living

standards of people with muscular disorders.• No special clinics or hospitals for PALS but Rilutek is 100% compensated by

state.• Bi-pap is offered for free As living at home with invasive ventilation (with

respirator) is difficult (due to non-adequate services).• Nursing and PAS is poorly financed.• Physiotherapy according to the rehabilitation plan.Not sufficient for PALS

and reaching therapies is difficult in small places and basicaly 15 day-s a year .

• El.wheelchair-10% by yourself. And Hoist- 50% by yourself.• Communication aids are not in list of partly or fully compensated inva-aids. • Adjustments in the home-depends of municipality.• Relocating from not accesible housing is in Estonia problematic.• Ice Bucket Challenge was helping rise money for org. and ALS patients.

Thanks for listening!

The Estonian Association of Muscular Disorders (EAMD) board member-Jüri Lehtmets

2015