Counting the real cost of muscular dystrophy

One woman was waiting 12 months for her wheelchair to be fixed, finds MD research

Annette Costello was diagnosed with limb girdle muscular dystrophy in her mid-30s: ‘The disability sector and youth facilities are two areas that have been impacted by cuts and that the new Government really need to address.’ Photograph: Dara Mac Dónaill

Annette Costello was diagnosed with limb girdle muscular dystrophy in her mid-30s: ‘The disability sector and youth facilities are two areas that have been impacted by cuts and that the new Government really need to address.’ Photograph: Dara Mac Dónaill

 

Many people living with muscular dystrophy in Ireland are under severe financial pressure and are often forced to pay for expensive medicines, wheelchair repairs and home adaptations, new research has shown.

The research, carried out for Muscular Dystrophy Ireland and funded by the Irish Research Council, found that few people with muscular dystrophy (MD) have access to a personal assistant (PA) and there is confusion around the eligibility criteria and application process.

Researcher Dr Aileen Lynch, who undertook the research with Dr Honor Nicholl and their team in the school of nursing and midwifery at Trinity College Dublin, says the lack of access to a PA is a key challenge for participants in the study.

“A PA is somebody who is employed to assist the person with MD, essentially as an extension of their limbs. Those who are lucky enough to have access to a PA often have minimal hours that are not sufficient to meet their needs, it’s almost tokenism. They worry about how they will manage in the future if their condition deteriorates,” she says.

Muscular dystrophy is a group of diseases that cause progressive weakness and loss of muscle mass. In MD, abnormal genes or mutations interfere with the production of proteins needed to form healthy muscle.

There are many different kinds of muscular dystrophy with symptoms of the most common types beginning in childhood, primarily in boys. Other types do not surface until adulthood.

No cure

There is no cure for MD but there have been advances in increasing the quality of life for people with the condition, and scientists around the world are working on potential new treatments.

Lynch says another major challenge for people with MD in Ireland is access to assistive equipment such as wheelchairs and breathing equipment, and long delays in having equipment repaired.

“One of the participants in our study said her chair was her biggest problem. She was waiting over 12 months to get it fixed and couldn’t move without it. There is such a long bureaucratic process to go through when applying for equipment and a lack of communications between the bodies supplying it. The upshot is that many people have to purchase equipment and fund repairs themselves,” she says.

Huge delays

“There are also lots of challenges around engaging with employment, such as not having transport and having to pay for wheelchair-accessible taxis which cost more; insufficient personal assistance hours or none at all; inaccessible buildings; and a lack of assistive technology in the workplace such as voice-recognition software.

“Participants were confused about what benefits or entitlements they would be relinquishing if they did return to the workforce. The whole area is a complete mess; the lack of clarity is a barrier to engagement with employment,” says Lynch.

Clair Kelly, information and research officer at Muscular Dystrophy Ireland, says 70 per cent of its members need assistance every single day from family members and the PA service is critical for them. She highlights the financial implications of living with MD.

“Not everybody with MD is entitled to a medical card and not all medicines are covered by the long-term illness scheme, so some people spend a fortune on medication every month.

“Most people need adaptations to their houses, but the grants are hard to get and often don’t cover the full cost. A lot of our members need overnight ventilation, which is expensive to hire. They also have to pay for therapies like physiotherapy, on top of paying for aids, appliances, specialist appointments, diagnostics and medication.

“Due to their impaired mobility, people with MD often have problems with their circulation, so their electricity and heating bills are very high. Most either don’t work at all or have to reduce their working hours due to their condition as fatigue can be a significant issue,” she explains.

On the positive side, multidisciplinary teams and GPs were praised by participants in the research study for the important roles they play in supporting the health of people with MD.

Participant quotes from the study:

On assistive equipment: “My chair is my biggest problem and getting it repaired. There is no funding to get repairs done and I was waiting for over 12 months to get one fixed. You can’t move without it and everything stops.”

On building adaptations: “(They) made (my home) accessible for a wheelchair user, but not for me…everything was real low down, whereas I struggle to bend down… and even our back door, it has a step so I have to use the front door.”

“There should be some clear pathway to get the information and get things done because though [housing adaptation] has been approved, there is so much red tape that makes life so difficult.”

On financial implications: “We don’t go out, never … can’t afford it and I am a really cold person… the heating and things like that are the biggest financial burden.”

“It is twice as expensive to live with a disability because you have to pay for everything to be done, even to hang a picture, you have to pay someone to do it. Everything you do costs money so [one’s condition] does have a huge impact.”

On employment: “I think the reason that many people with disabilities are not in employment is that supporting services are not available to them.”

For further information on Muscular Dystrophy Ireland and its support services, go to mdi.ie or freefone 1800 245 300.

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