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Vikki's story

Vikki William’s partner became a prisoner in their second-storey tenement flat for over a year due to a lack of accessible housing.

Paul Smith, a former Physical Training Instructor in the Royal Artillery, was diagnosed with MND in December 2016. The diagnosis saw him decline from fighting fit to housebound in a matter of months.

The couple lived together in their small private rented flat in the city’s Morningside area. Struggling to cope on Vikki’s salary alone, Vikki and Paul began imploring Edinburgh City Council to recognise the seriousness of Paul’s MND diagnosis and prioritise the pair for accessible housing.

Edinburgh City Council refused to place the couple on the highest priority, leaving Paul trapped when his mobility continued to decline rapidly.

Vikki said: “He became a prisoner in our flat because he couldn’t get up and down the stairs. If he needed to go to the toilet, he would have to try and hold it in until I was home because he wasn’t able to pull his clothes down and back up. He couldn’t feed himself either; it’s the most horrendous thing a human can have."

Originally the couple were told that their situation did not warrant an assessment for top-level housing priority because Paul still had the use of his legs. Vikki attempted to explain the rapidly progressing nature of MND and the fact that time would not be on their side, with no avail.

In Edinburgh, a complex bidding system is in place for people looking to access social housing. Over the course of Paul’s progression with MND, Paul and Vikki had bid for a total of 23 flats within a manageable distance of their existing support network. Out of desperation, the couple had even bid for flats that were not fully accessible, but which would represent a marginal improvement for Paul.

“We started applying for flats in April 2017, and after three months of Paul’s health rapidly deteriorating, we got in touch with the Council again to ask how high we were on the list.

“Maybe I was a bit naive; I didn’t know how bad the housing situation was. I got an email back from the Council pretty much saying: three months is nothing; you’re nowhere near the top.

“I explained our situation and why we were applying but that didn’t seem to help. I contacted them again and they informed us that, until Paul can’t walk, we wouldn’t be on the top priority list. So, they expected us to wait until Paul was physically trapped in our flat before they would consider putting us on the most urgent waiting list.

“We had our Occupational Therapist come around and do an assessment and we contacted the Council again in August 2017 saying that we’re really desperate now, that we couldn’t get up and down the stairs; still nothing.

“At this point, Paul had next to no strength, relied on a ventilator to breathe properly, and his balance was off and needed to be helped when walking. Taking Paul anywhere near the winding, worn-out, concrete stairwell in our flat would have put us both at a serious risk of injury.

“Eight months later, in April 2018, they came back saying that we’re now on the most urgent list and that they had back-dated this to August. But we were already beyond desperate at that point.”

At breaking-point, the couple finally found out they were successful in a bid for a ground-floor flat in late March 2018, but their problems didn’t end there.

“We were so grateful to finally secure a ground-floor flat, but it wasn’t really accessible. There was a wet room but the entrance only just fits a manual wheelchair. Paul was eventually given a powered wheelchair, but this chair was too big to turn into certain rooms from the narrow entrance. He also wasn’t allowed to use it outside until a proper ramp had been fitted.

“There was one step into the flat and I had a temporary ramp that I could put in and out each time I took Paul out, however the powered chair was deemed too heavy for the temporary ramp so then we had to wait for a ramp to be fitted.

“Paul never used the powered chair outside and never saw it as the ramp was finished the day he passed away.

“We also faced another new problem – that Paul might lose his care package as we were moving into an area with a different provider. This was the last thing that we needed to hear."

MND Scotland stepped in to help Paul and Vikki secure the care package they needed in order to make the move.

“Over the course of the year we were waiting for a new flat, it was never mentioned to us that we would have to consider finding new care. The Council told us that, because we were moving, we might struggle to find care in that area, and they asked us what our ‘Plan B’ was. Maybe I was a bit na├»ve, but I didn’t realise the whole process would be such a nightmare.”

MND Scotland tied-in with Paul’s Social Worker and Edinburgh City Council’s Care Matching Unit to issue a care request to local care providers. After explaining the urgency of Paul’s case, including information on free ventilation training and professional grants that MND Scotland offer, the care package was finally secured.

This meant that Paul and Vikki were now able to move into their new ground-floor flat, over a year after beginning their search for a suitable home.

Now is the time for change

Paul’s story highlights how the system is flawed.  Bidding systems and long waiting lists don’t work for people with rapidly progressing terminal illness.  Local authority teams must proactively work together to ensure that accessible homes are directly matched to those who need them most, such as people with MND. We are calling for:

  • Fast-tracking people with MND
  • Empty homes to be made accessible
  • Space and quality standards for new homes
  • National accessible housing target (10% minimum)

Read our full manifesto.

Now is the time to be heard

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