Spain

The economic crisis has taken a harsh toll on people with MS in Spain: access to rehabilitation has declined to around 20% of the total MS population,  with unemployment and the future of reimbursements remaining big problems.

Free health care provides relatively good access to disease-modifying drugs, but state reimbursement is no longer sufficient to cover the costs of MS. Self-supporting MS centres have emerged, but as government subsidies have dropped sharply, the centres are forced to cut services.

In 2011, 50% of people with MS worked full-time and another 10% hold part-time; for 2013 there is no clear estimate.

Employment legislation is weak on protecting the rights of people to retain their positions after MS diagnosis and similarly for flexible working conditions. 

EMSP’s MS Barometer offers additional country insights. It also shows that access to treatment, therapies and employment varies greatly across Europe (MS BAROMETER)

Asociación Española de Esclerosis Multiple (AEDEM-COCEMFE)

C/ Sangenjo, 36 - 28034 MADRID - SPAIN
Tel: +34 90 215 18 22 | Fax:   +34 91 448 12 61 | E-mail : aedem@aedem.org |
Website : www.aedem.org

Esclerosis Multiple España

C/ Santa Hortensia, 15. Of.B2 - 28002 MADRID - SPAIN
Tel: +34 91 441 01 59, +34 91 399 29 42  E-mail : info@esclerosismultiple.com |
Website : www.esclerosismultiple.com

  • "When I travelled to Madrid in 2011, I shared the life of people with Multiple Sclerosis for the first time and I felt the harshness of their plight in such way that I could almost experience their symptoms myself.

    When we parted ways, Milagros (one of the two principal characters from the short documentary film) told me after having seen my weakness: “You take care of yourself. I don’t want you to call me. Live your life.” I did as she said. 

    However I did keep in touch with Almudena (the other principal character), as we are of a similar age and have common interests. She and her family kept the disease at bay, not allowing themselves to be consumed by the concern for the condition.

    Since I finished the first part of this story in 2011, my friendship with Almudena strengthened whilst Milagros’ memory rested in a corner of my mind, next to those fears you never want to face.

    When I met them again in 2014, I expected to find Milagros battling hard against her husband’s debilitating symptoms, made even more difficult to manage after the inhuman budget cuts prompted by the financial crisis, and also to find a more disabled Almudena. I was positively surprised. They had both found ways to continue living with the disease, or despite it."

    Lurdes R. Basolí 

    • Madrid, Spain, 10/2011 • Umbrellas for days of rainy weather; walking sticks for days when MS decides to act up. Relapsing-remitting MS is definitely temperamental: a PwMS might have months or years of relative calm, suddenly interrupted by extremes. When MS turns foul, the symptoms can include one or all of the following: fatigue, vision problems, loss of feeling or complete paralysis, bladder or bowel dysfunction, or loss of mental capacities. The impact of any symptom might be mildly annoying to outright
    • Madrid, Spain, 10/2011 • Mother and son are equally happy to have a lazy wake up. Jorge likes to sleep in her parents’ bed. Now it is time to get up and get dressed for them to go to university (Almudena) and to school (Jorge). Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • Saturday afternoon at the zoo is a time for Almudena and her husband to lavish attention on their son. The outing will fatigue Almudena, but she recognises the need for a 3-year-old boy to burn off energy and be out exploring the world. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • Heads turn at the zoo’s amphitheatre as David carries his wife, Almudena, up to her seat. On the platform below, her wheelchair is equally eye-catching among a small horde of baby strollers. Making sure their son has an active life is more important than giving any serious consideration to how strangers react to the ways they cope with living with MS. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • Many couples say living with MS is like having a third person in the marriage: one who often interferes with plans and creates physical, psychological and emotional strain. Almudena Movilla Morena takes advantage of a quiet moment to reassure her husband David that right now, they are just two. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • A plastic chair, a well-placed grab-bar and a shelf within easy reach for toiletries. Like many PwMS, Almudena Movilla Morena takes many steps to minimise the effort required to carry out mundane tasks such as taking a shower. Managing MS is very much about managing a limited reserve of physical energy that depletes quickly. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • To get from home to her classes at the university, Almudena Movilla Morena has employed crutches, car (which is adapted for hand control) and wheelchair (with crutches tucked on the side). Once at the university, she parks the car and a volunteer picks her up and drives her with the wheelchari. the most cumbersome option and gets back on her feet. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • Almudena Movilla Morena is beginning to have bladder control problems due to MS. She has opted for Botox injections to strengthen the wall of her bladder. The treatment gives her reassurance when she is out in public, but means that she has to apply pressure to her bladder to pass urine. Retention of urine is a serious problem for PwMS; it can lead to serious infections, which can be fatal. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • Almudena Movilla Morena’s (33) greatest fear is that MS will rob her of the pleasure – and the identity – that she derives from being a mother, a woman, a wife. Weekend outings, feminine clothes and Botox injections for bladder control are part of living in the here and now. Pursuit of a university degree is more about planning for the future by securing a job that emphasizes mental agility over physical ability. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • The most common but invisible symptom of MS is the fatigue. Almudena, who is a very active person, likes to take a nap in the afternoon when she is at home. It gives her back some energy to continue with the rest of the day. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • Horseback riding gently and rhythmically moves the rider's body through motions similar to walking. It was developed as a specific therapy to improve flexibility, balance and muscle strength in the trunk, pelvis and hips the 1960s. Almudena Movilla Morena’s sessions typically include balance and co-ordinated movement activities for a full-body workout that increases functionality both on and off the horse. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • Fatigue is truly debilitating for Antonio Bellot Molinero, but for his wife the worst consequence is the loss of cognitive hability. He rarely leaves the apartment he shares with his wife and daughter, and spends many hours each day resting or watching TV. His situation reflects how social and economic status affects MS. Membership fees for the local MS society are beyond his financial means but through social services, he is entitled to rehabilitation only in the aftermath of a rel
    • Madrid, Spain, 10/2011 • Days pass slowly for Antonio Bellot Molinero. Although he still has reasonably good mobility, he is easily overcome by fatigue. He spends most days at home, moving little more than from bed to sofa to chair, spending much of his time napping or watching TV. Although he knows smoking is particularly bad for PwMS, it is one of the few pleasures he still has in life. Credit: Lurdes R. Basolí
    • Spain, 10/2011 • Simple measures like placing a plastic chair in the shower can be critical ways to reduce risk and budget energy for a PwMS. Poor balance or lack of sensitivity in the feet and legs makes wet floors particularly dangerous. The 5 to 10 minutes it takes to shower standing up might rob them of the energy needed to do things they find more important later in the day. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • As Antonio’s world becomes more confined by the walls of their apartment, his wife Milagros Albertos feels her role is evolving from wife and partner to nurse or mother. She is losing important elements of her own identity and is often faced with difficult choices such as going out with friends or staying in to show her support. As their financial situation worsens, they are forced to consider moving in with Antonio’s mother. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • Days pass slowly for Antonio Bellot Molinero. Although he still has reasonably good mobility, he is easily overcome by fatigue. He spends most days at home, moving little more than from bed to sofa to chair, spending much of his time napping or watching TV. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • Fatigue is truly debilitating for Antonio Bellot Molinero. He sleeps many hours every day, and rarely leaves the apartment he shares with his wife and daughter. Antonio spends most days moving little more than from bed to sofa to chair; when awake, he spends the best part of his time watching TV. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • As Antonio’s world becomes more confined by the walls of their apartment, his wife Milagros Albertos feels her role is evolving from wife and partner to nurse or mother. She is losing important elements of her own identity and is often faced with difficult choices such as going out with friends or staying in to show her support. As their financial situation worsens, they are forced to consider moving in with Antonio’s mother. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • Fatigue is truly debilitating for Antonio Bellot Molinero; he rarely leaves the apartment he shares with his wife and daughter, and spends many hours each day resting or watching TV. His situation reflects how social and economic status affects MS. Membership fees for the local MS society are beyond his financial means but through social services, he is entitled to rehabilitation only in the aftermath of a relapse. Credit: Lurdes R. Basolí
    • Madrid, Spain, 10/2011 • Antonio Bellot and his daughter Silvia don’t coincide very much as she is usually out of the house doing her own activities and he can’t accompain her. Due to Antonio’s cognitive problems, their communication is reduced to hello and goodbye kisses. Credit: Lurdes R. Basolí
    Photographer:
    Lurdes R. Basolí

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