Aspire’s research examining the lives of spinal cord injured people living in adapted and unadapted homes
A press release:
Aspire, a national charity that provides practical help to people who have been paralysed by Spinal Cord Injury, has today released the findings of an independent study undertaken by Loughborough University: “The health and wellbeing of spinal cord injured adults and the family: examining lives in adapted and unadapted homes.”
No one can ever be prepared for how a spinal cord injury (SCI) will change their life. There are many factors to be considered when someone leaves hospital, a main priority being where they are going to live. Very few people’s homes are suitable for a wheelchair without needing any adaptations, such as a ramp so they can simply get to the front door.
Due to a lack of available accessible housing in the UK, 86% of people with SCI are likely to be discharged into a home that doesn’t meet their physical needs. On leaving hospital many spinal cord injured people are forced to live in a care home or an unadapted property, often having to live in just one room downstairs which can make them feel like they are living in a prison.
Aspire commissioned research with Loughborough University to examine the impact on spinal cord injured adults and their families of living in adapted and unadapted homes. The research found that people living in unadapted properties are less likely to be employed or see their friends, will have poor health and are more likely to suffer from depression and have suicidal thoughts.
A research participant said: “My flat used to be nice but now it’s turned into a prison because it’s not adapted. I feel really trapped. It’s just a horrible feeling.”
The research found that many spinal cord injured people talked about having to “battle” and “fight” with the local authorities when trying to get the adaptations they so desperately need.
One participant said:
“At the moment I think if I have to describe myself in one word it would be a ‘battler’ because that’ what my life has turned into; a battle in many directions. The process started as soon as I came out of hospital and it’s a year and 3 months on and I’m only still at the application stage. The thing is it’s very tiring battling, it’s really exhausting. I feel really frustrated and a bit defeated by it. It’s making me more depressed. Why put me through this? Are people who work in housing trying to make my life more miserable?”
Another participant said:
“Mentally we’re quite strong people – and they’ve brought us down quite low, but they haven’t broke us yet – we’ve still got that little bit of fight left. But it does bring you right down – you actually lose the will to fight, and then you end up struggling. Why does this happen. Do people want to make us struggle? Our life isn’t great, it’s not. A house, with adaptions, is all we ask. That would give us the start we need and we could move forward.”
Aspire is calling for:
• Government, nationally and locally, to start taking this issue seriously and end the misery of domestic incarceration for a population equivalent in size to the Prime Minister’s own constituency. We want a new duty to be included in the Housing and Planning bill 2015, currently going through Parliament; to require all local authorities to accurately assess the level of need for wheelchair accessible homes, and set appropriate targets in their local development plans.
• We acknowledge that new wheelchair accessible homes aren’t the whole answer. It is also vital that local housing authorities make much more efficient and effective use of existing adapted and accessible accommodation.
• Local authorities, in implementing The Care Act 2014, should recognise the essential role that housing plays in health and wellbeing, and incorporate housing into local integrated care strategies and services. For people with SCI, this would mean being discharged from rehabilitation into an adapted property which supports their right to independent living, if it is not possible to make adaptations in their previous home.
• To enable spinal cord injured people to remain in their own homes whenever practicable, by improving the processes to enable them to obtain grants and have adaptations approved much more quickly.
• The lack of suitable housing results in more spinal cord injured patients unnecessarily spending additional weeks in hospital waiting for adaptations to their own home, or for a wheelchair accessible home to be found. It costs the NHS £960 per day for a bed in a Spinal Injury Centre. This avoidable cost is also incurred when spinal cord injured people are readmitted for treatment for bladder infections, pressure sores or falls brought about by living in unadapted housing.
• Providing more adapted housing for disabled people will also benefit the increasing ageing population and is therefore an investment that will significantly help the current and future UK population.
Brian Carlin, Chief Executive of Aspire, comments: “Every eight hours in the UK someone is paralysed by a spinal cord injury. It can happen to anyone at any time and no one is prepared for how it will change their life. When leaving hospital, housing is a key concern for spinal cord injured people because most people’s homes are not suitable for a wheelchair. This results in many people having to go into a care home or unadapted housing. Previous research by Loughborough University found that having to live in a care home has a devastating impact on the lives of people paralysed by spinal cord injury, with their lives being put at risk. This new research brings to light the negative impacts of living in unadapted accommodation.
The Aspire Housing Programme offers short-term adapted accommodation whilst a permanent housing solution is found, but more wheelchair accessible homes are needed throughout the country, which is why we are calling for the amendment to the Housing and Planning bill 2015.”
Read Jochem’s story at http://www.aspire.org.uk/jochems-story