In our #ThroughOurEyes campaign, we’re shining a spotlight on people with physical disabilities and the importance of connections with community and friends and family. Here, Linda, the mum of 24-year-old Nina, who is quadriplegic, tells us how Shinewater Court has become a home for Nina.
“Nina is gorgeous. I know I’m biased but she has a lovely nature. She adores being with people and she amazes us every single day. She is a 24-year-old woman, which we sometimes forget, but she reminds us clearly if we treat her like a baby!
Nina has quadriplegia, which means she is paralysed from the neck down. She also has a type of brain injury called periventricular leukomalacia which has resulted in her being severely visually impaired. She is nonverbal apart from a couple of words.
Despite her learning difficulties she understands most of what is said to her. We learned this when she would listen to conversations and laugh at something we said or become distressed if she overheard someone was unwell or had died.
Finding the right place for Nina to live
Nina was a day student at the Chailey Heritage Foundation and the staff were fantastic, but as she was getting older we knew that she needed to move on. We moved her to a residential college, but we weren’t 100% comfortable with it. We were very disheartened and felt Nina would have to return home to us. This wasn’t a problem, but Nina has two brothers and if anything happened to Nina’s dad and I, we didn’t want them to have the responsibility of caring for her. We also didn’t want adult services to decide where she lived.
Someone suggested that we look at Shinewater Court, which is only a short walk from our house. Within minutes of being in the building we knew we’d found where we wanted her to go. After Nina had visited and been very vocal in her opinion of the place, we moved her there. She’s now been at Shinewater Court for four years.
Nina is so happy, and because she is happy, so are we. Just after Nina moved to Shinewater, she had an eye infection which meant a visit to A and E. The staff suggested they take her as we had booked a holiday, and we were confident that they would be ok looking after her. As it was, we ended up going to meet her at A and E and eventually took her back to Shinewater around 11pm. It was only then that we found out that the staff member who had been with her for the whole time, should have finished her shift about three hours before.
During the pandemic the staff at Shinewater have been amazing. They have robust policies in place and have kept our daughter safe and well. Because of the activities available in the day centre and the day trips out, life has been the best it can be for Nina. We have always visited as much as we can and when we were unable to go into the building the staff kept us informed and updated. Often the staff would WhatsApp us out of the blue on Nina’s phone which was brilliant.
A home from home
Nina loves the day centre at Shinewater Court. She does arts and crafts and loads of activities. If we go to see her and she’s involved in something, she makes it very clear that we will have to wait until she’s finished! She has music on in her room and she is always in company, whether in the dining room or in the day centre.
A year after Nina moved into Shinewater, I dropped in one day. As I went to go into the dining room I could see Nina in the far corner, sitting having a drink with one of the staff. No one had seen me come in. She was very happy, laughing and shouting. I watched for a moment before I went in and saw her keyworker walk past her and give Nina a little hug. It was so natural and genuine; I just knew we had found the place for Nina.
Nina is happy and safe there and I feel that we have a brilliant relationship with the staff and management. It feels like a home in every sense of the word.”
To find out more about our #ThroughOurEyes campaign and how you can support us, visit www.thedtgroup.org
WE ALL WORK TOGETHER TO PROVIDE THE BEST SUPPORT AND CARE
As part of our #ThroughOurEyes campaign, we’re sharing different perspectives on physical disabilities. We hear from Nicola McLean, a specialist physiotherapist with an NHS background, who works into one of our residential homes in Northumberland.
“I’ve been working as a physiotherapist within the Northumberland Head Injuries Service for four years and I’ve had the privilege of working with residents at Jane Percy House throughout that time.
People living here feel safe, are encouraged to develop their confidence and independence, and are part of a supportive community.
Putting people with physical disabilities at the heart of their care
My colleagues and I have built up excellent working relationships with the people we support, which has led to many residents meeting their rehabilitation goals. No matter what the objective, we all work together to provide the best support and care – from helping people to carry out exercise programmes to supporting them to dress themselves.
When it comes to setting goals with the people we support, we use a ‘Wellbeing Star’. This places disabled people at the centre of their care and considers all aspects of their life, not just how to cope with their symptoms. We review progress regularly with the people we support alongside their wider care team.
Supporting people to become more independent
Someone I worked with at Jane Percy House earlier this year is a great example of how people with physical disabilities can gain independence and stay connected with their community. This resident wanted to be able to stand up from her wheelchair to use the toilet. This would mean she’d be able to get out and about in her local area, knowing she could access the toilet if she needed to.
For the first six months she needed three sessions of physiotherapy a week to work towards this goal. The idea was that once she could manage it with confidence, her carers would then start supporting her with this. In fact, she ended up moving to her own home and through our continued involvement, she’s achieved her goal. The therapy input and support she had from the whole care team at Jane Percy House has contributed to this fantastic outcome.
The challenges of Covid-19
The pandemic has impacted the way we work as we weren’t able to offer face-to-face rehabilitation for several months. But we regularly communicated with the people we support to make sure they were looked after during an incredibly difficult and worrying time.
The resilience of residents and staff at Jane Percy House during the Covid-19 pandemic has been inspiring.
Pushing the boundaries
We’re looking to increase the use of technology in rehabilitation, so that the people we support can access exercises on their phones and tablets. We know this will make a big difference to people with physical disabilities and help them reach their goals.”
Find out more about the support we provide to people with physical disabilities and their families www.thedtgroup.org
USING TECHNOLOGY TO HELP PEOPLE STAY CONNECTED
In our #ThroughOurEyes campaign, we look at how assistive technology in two of our services is making a difference to the lives of people we support.
Assistive technology plays a key role in helping disabled people to live independent and fulfilling lives. Yet challenges with accessibility and affordability mean disabled people can’t always take advantage of the latest innovations. However now more than ever there is a shift from assistive technology to mainstream technology, which is opening-up new possibilities.
Studies have shown that assistive technology can help reduce feelings of loneliness, support mental health and wellbeing, and give disabled people more choice and control. Technology also helps the people we support to stay connected with their loved ones.
That’s why we’ve been piloting the use of Smart Home devices at two of our residential services: Shinewater Court in Eastbourne and Jane Percy House in Cramlington in Northumberland, as part of our Connectability research project.
The project aims to primarily understand the impact of Smart Assistants on people’s wellbeing and how these devices can be best assimilated within different service environments.
We’re now one year into a two-year pilot, and over 24 people at Shinewater Court and Jane Percy House are using Smart Assistant devices called Amazon Echo Show 5 smart speaker with Alexa. They can use the smart assistant to listen to music, find out the weather forecast and play games, simply by saying commands out loud. The devices also support people to carry out important daily tasks, like taking their medication, by setting reminders. The Smart Assistants can also be used to switch on smart lightbulbs and other connected devices through smart plugs.
Early findings from the people we support shows that using the technology makes people feel more independent, better organised and less reliant on staff. They also say it makes a difference to their mood and wellbeing, helping them to feel calmer.
We will continue to collate results from the Connectability project and will share the outcomes of the research in due course. We are hopeful we can innovate to ensure more people like Toni can regain independence.
Giving Toni a lifeline
Toni, 36, has cerebral palsy and has been living at Jane Percy House for 13 years. When she was confined to bed for a few weeks following an operation, the Alexa device was a lifeline.
Toni says: “It’s keeping me sane. If I didn’t have it, I would be completely bored and going stir crazy.”
Before having the device, Toni would have to ask staff to turn on the radio or TV. She’d also need help to switch her light on and off.
She adds: “The other night I couldn’t sleep. I was able to put the radio on myself.”
By saying commands out loud to the device, Toni has been able to play games and listen to music. This makes Toni feel independent and gives her more choice and control.
“It’s amazing,” she says. “I can do more myself now. It has lifted my mood and opened another door for me. I feel like I am living in a totally different world.”
This work is all possible due to generous donations, to find out more about our #ThroughOurEyes campaign and how you can support us, visit www.thedtgroup.org
WE CHOSE VICTORIA HOUSE FOR NEIL AS IT SUPPORTS PEOPLE TO BECOME AS INDEPENDENT AS POSSIBLE
Neil was only 43 when he had a brain haemorrhage in 2012 and was given a five percent chance of survival. Here, in our #ThroughOurEyes campaign, Neil’s mum Marjorie talks about how Victoria House in Hull has supported her son to socialise and mix with other people, building relationships with new friends.
“When Neil was 30 years old, he had an unexpected epileptic fit. It was discovered during tests that he had a brain arteriovenous malformation. This is an abnormal cluster of blood vessels connecting arteries and veins in the brain. It was too risky to operate on so it was left alone, and Neil tried to carry on with his life.
Then in 2012 when Neil was 43, he had a brain haemorrhage. He was given a 5% chance of survival. The bleed caused severe brain damage and left
him with significant cognitive problems. This means he has a short attention span, memory problems and can no longer retain information, all of which impacts on his daily life. Neil also can’t walk or stand and is in a wheelchair. Neil spent seven months in hospital followed by five months of brain injury rehabilitation. He was then discharged into nursing care with a feeding tube, as he needs 24/7 support and help with all aspects of daily living.
The rehabilitation journey
Neil’s life has changed dramatically. From being a completely independent person enjoying his life, he is now dependent on people doing everything for him and anticipating his every need. Two years after his brain injury, Neil learnt to talk again and regained his ability to swallow. This meant he could eat and drink normally.
At school Neil was clever, and he went on gain three degrees in mathematics, computer science and natural sciences with earth sciences. Between degrees Neil lived and worked in Leeds and Bradford. In 1999 he returned to Hull where we live, working as a computer programmer at Hull University until he had his brain haemorrhage.
Neil was always active, enjoying walks across the UK and abroad. He was also very good at scrabble and took part in tournaments around the country.
Keeping families connected
Long before Neil’s brain injury, we were aware of Victoria House because we regularly walked our dogs nearby. Then after Neil’s brain injury our neighbour recommended Victoria House where her son was then a resident.
We chose Victoria House for Neil as it supports people to become as independent as possible. There were also people nearer Neil’s age, unlike other homes where residents tend to be older.
Neil went to live at Victoria House in June 2018 and seems to be happy and even remembers some staff names. Neil always had a dry sense of humour, and this is more apparent now since his brain injury. He likes to have a good laugh and a joke with the carers.
During lockdown staff supported Neil to have regular Skype calls with us. Neil benefits from socialising and mixing with other people, and with encouragement will join in activities. He especially likes quizzes and bingo.
Places like Victoria House are very important for disabled people like Neil who require 24/7 care. We wouldn’t be able to give him the care he needs.
Our hopes for Neil are that he is happy, healthy and has a good quality of life, and that he possibly improves even further.”
To find out more about our #ThroughOurEyes campaign and how you can support us, visit www.thedtgroup.org