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Madhia's story

Madhia Chaudhry spent eight months showering her mum at the local leisure centre while waiting for an essential wetroom installation. Tragically it was not completed until the day her mum died.

Shamim Tayyub was diagnosed with MND when she was 52 years old, in August 2018. During the eight months following, Madhia (27), who became her mum’s full-time carer, while also studying to finish her Optometry degree, had to fight for the adaptations Shamim needed to live her life safely and with dignity.

Shamim and MadhiaMadhia said: “After numerous falls, a swollen arm, several visits to A&E and being sent away, I finally refused to have my mum discharged until I had a neurologist see her.

“After spending a month in hospital, she was finally given a diagnosis of MND. I soon realised our home just wasn’t going to meet her needs anymore, so I requested a wetroom installation downstairs and a bedroom conversion in our garage, from the local council.

“I was promised the adaptations would be done ‘ASAP’ when my mother was discharged from hospital in September 2018.”

However, after weeks of follow up calls, Madhia was no further forward trying to care for her mother in a home that was completely unsuitable for her needs.

"As we didn’t have a shower downstairs and I couldn’t carry my mum up, I had to take her to Eastwood Leisure Centre myself, twice a week, to use the wetrooms so my mum could have a shower.

“I was advised  there was not any point in getting a wetroom as my mother was only expected to live six months. You can imagine how this made my mother and I feel. I was speechless.”

Unsure of what do next, Madhia turned to MND Scotland for support.

“I told MND Scotland's Advocacy Worker, Suzie, about  the horrific time my mother and I were facing for something she had every right to have - and fast!

“With Suzie's support I had several meetings back and forth with the local council. They refused to convert the garage into a bedroom but gave the go ahead to start the wetroom. I had intended to do the garage conversion privately afterwards as the living room was not big enough for all of my mother’s mobility equipment.

“By March 2019 my mother’s condition had got a lot worse and I could not lift her or hold her without equipment, therefore bed baths were the only option left. Having bed baths is not the same as a shower, and with someone who is on strong medication and painkillers, and who is sweating constantly, to feel fresh and clean with a shower is not too much to ask.

“When work finally did begin, it was April, eight months after my first request. The wetroom was due to be completed on 29th April – my mother died the same day.

“The battle we had with the council was simply not necessary, especially in such a difficult time. I had an absolutely horrific time and had to face so many challenges just to get my mother what she deserved for her dignity.

“I am always and forever grateful to Suzie for the support she gave me and my mother at the worst time of our lives. MND Scotland was a godsend and helped in every way they could.”

Now is the time for change  

Madhia’s story highlights how the system is flawed and why people with MND should be fast-tracked for adaptations. MND Scotland’s manifesto for the Scottish Parliament elections calls for:

  • Fast-tracking people with MND for adaptations  
  • Simplified processes 
  • Anticipatory adaptations planning
  • Investment in adaptations 

Read our full manifesto here.

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