Maria’s story – When the care lottery destroys life at home

In 2013, Maria, from Lancashire, fell down the stairs. Yet little did she know that such a desperate accident would also eventually lead to her being forced out of home against her will, destroying the life she had worked so hard to rebuild.

Maria’s son Ed says “In 2013 my Mum, Maria, was paralysed after falling down the stairs. She became a tetraplegic with almost no movement below the neck. She was two years in hospital. We were really looking forward to having her home. But just two weeks before we got to have her home my Dad was tragically killed in a motorcycle accident.

The 24-hour care and support Mum had when she came home meant everything to us. It was the world of difference in how we spent time together as a family. Mum was able to spend precious playtime with the grandchildren both indoors and outdoors.

This was all because Mum was had been receiving a fully funded package of support with carers who managed her complex SCI needs round-the-clock in her own home. During this time she had two reviews. Each concluded she was eligible for NHS Continuing Healthcare (CHC) funding as her health had not improved.”

Then she went to her next ‘routine’ review. Incredibly her local NHS funders immediately withdrew her vital 24/7 care following this review.” Maria and her family were distraught. Her condition had not changed, and previous assessments had confirmed her eligibility for the essential care that enabled her to lead a safe and independent care.

The family were forced to ask the local social services department for help. Yet all they could provide was six hours of care a day. Maria said. “I can’t do anything without support, I can just about pick up gadgets so I really depend on other people. How can I manage on six hours a day with my needs?” Maria and her family had no choice but to mover her out of the family home and into a care home.

She added. “I’ve been here – in a nursing home – since January. It’s not like at home. They don’t really meet your needs and don’t really look after you. You feel like you dare not ask for things, because you’re hard work.

At home and with 24 hour care I could do anything I wanted. They were always there and If I wanted to go out, to a meeting or to see friends, I could go, even travelling to meet my sister. The care staff were familiar with things like Autonomic Dysreflexia – a life threatening condition that I have and all of the other issues associated with my needs.

I’m terrified that I will be here for the rest of my life. It’s unbelievable how they’ve done this to me. I just feel I am a number, not a person. I wouldn’t wish it on anybody to be in a situation like this.”

Dave Bracher, Campaigns Manager at Spinal Injuries Association said. “Home is more than bricks and mortar. It’s where you feel safe, where you spend time with your family and loved ones and where after spinal cord injury you rebuild your life, often against the odds. That Maria has been forced out of her own home and into a care home – and all because of shockingly poor decision making by the NHS – is nothing short of a national disgrace. The right to lead a fulfilled life, contributing as you can to society and living at home surrounded by your loved ones should be open to all.”

Maria remains in a nursing home against her will, unable to lead an independent life and making her own choices. Her physical and mental health is under threat. She deserves better. The Spinal Injuries Association Advocacy team is working hard to get Maria home so she can resume her life. Maria has now been in a care home for five months.

ssues associated with my needs.

I’m terrified that I will be here for the rest of my life. It’s unbelievable how they’ve done this to me. I just feel I am a number, not a person. I wouldn’t wish it on anybody to be in a situation like this.”

Dave Bracher, Campaigns Manager at Spinal Injuries Association said. “Home is more than bricks and mortar. It’s where you feel safe, where you spend time with your family and loved ones and where after spinal cord injury you rebuild your life, often against the odds. That Maria has been forced out of her own home and into a care home – and all because of shockingly poor decision making by the NHS – is nothing short of a national disgrace. The right to lead a fulfilled life, contributing as you can to society and living at home surrounded by your loved ones should be open to all.”

Maria remains in a nursing home against her will, unable to lead an independent life and making her own choices. Her physical and mental health is under threat. She deserves better. The Spinal Injuries Association Advocacy team is working hard to get Maria home so she can resume her life. Maria has now been in a care home for five months.