Matthew’s Success Story – Heatherington House
On the 19th July, Matthew celebrated turning 30 with a party at Heatherington House, the specialist residential Prader-Willi Syndrome Service, where he has lived for the past seven years.
Along with the other supported individuals who live at the service, his support team, and his sister Christine who was making a special visit for the occasion, Matthew enjoyed a delicious home cooked meal and birthday cake. The house was also decorated with a giant 30th birthday banner and multiple balloons including one featuring Mathew’s smiley face.
Matthew had an amazing day and his sister was over the moon to see him turn 30 and to see how well he is doing. She said, “My experience here visiting my brother has been absolutely outstanding. Extremely friendly caring, supportive and professional staff. All of the supported individuals are very welcoming too and it’s been wonderful to see them all with their daily routines, smiles and generally talking with one another.”
Touch and go
Reaching his third decade was a particularly significant milestone for Matthew as prior to moving into the service seven years ago, Matthew’s life had been hanging in the balance at Birmingham hospital. He was on life support; his internal organs were shutting down and he had a serious heart condition.
As it reached the stage where doctors were discussing turning off his life support with his mum, Matthew miraculously took a turn for the better and they began to see some improvements.
It was shortly after this, that the team at Heatherington became aware of the possibility that Matthew may come to live at the Service. In preparation, the support team began taking one of the individuals already living at Heatherington to the hospital to visit Matthew so they could get to know each other and start to build a rapport. The visits went on for several weeks and while Matthew was no longer critically ill, he still had several serious health issues, was morbidly obese and on medication for his heart.
Rated outstanding by the CQC in all five KLOE’s, Heatherington House is a specialist residential Service in Kettering, Northants that provides support and accommodation for up to eight young men with PraderWilli Syndrome. Individuals may also have a learning disability and/ or autism and other complex needs, such as challenging behaviour. The focus is on supporting individuals to manage their PWS through a healthy and active lifestyle, while also supporting them to grow in independence and autonomy and have a meaningful life as part of their community.
Due to her own personal difficulties, Matthew’s mum was unable to attend the transition meetings with his social worker and so the team had very little information about him when he arrived.
Service Manager, Margaret Elliot recalls, “At the hospital, they couldn’t tell Matthew he was coming to live at Heatherington because due to his autism he wouldn’t have come, so instead they told him he was going on a trip with a nurse called Mary. He was brought in an ambulance to the Service and dropped at the door with just a plastic carrier bag.”
Early challenges and setbacks
After Matthew moved in, the team soon discovered that his autistic traits far outweighed his PWS traits. It was very difficult for them to manage his behaviour because the usual approaches and strategies used with an individual with PWS did not work with Matthew.
“He went 72 hours without any food and drink. We were thinking, well how did he get that big? Previously he had just been given whatever he wanted, he stayed in bed, never went out and ate and drank what he could, but we had a duty of care not to do that. So, we knew we had to change his focus.”
“When he was upset, he would have difficulty communicating because he would mumble, and we couldn’t encourage him with food and drink. We tried to include him in everything we did, like going to the local swimming pool, but when we arrived, he would refuse to move and would spend hours in the changing room.”
“If we took him into town, he would lower himself to the ground and wouldn’t move. Due to Matthew being morbidly obese, we were unable to move him by ourselves, and would have to call the paramedics to pick him up.”
The team experienced very challenging incidents with Matthew for the first 12 months. Consensus inhouse Positive Behaviour Intervention Team were involved in supporting the team with Positive Behaviour strategies and approaches to support Matthew.
Reflecting on those early days, Margaret said, “One particularly difficult time was when he had been at the Service for a year and he lay in bed and wouldn’t move for days. He was incontinent, and this burned his skin and he ended up in hospital with an infection. While he was in hospital, he really went backwards and then after six weeks, they put him in nappies and discharged him.”
Over this time, he had put back all the weight he had lost back on and he was refusing to come back. Margaret was able to get him into a wheelchair and to the car park, however, he refused to get out of it and into the vehicle.
Margaret said, “We were in the car park for over six hours. I called my PWS colleague, Myles Kelly for support however he was unable to talk Matthew round. In the end we had to order a special taxi that could accommodate the wheelchair. Matthew screamed all the way and when we got home, he refused to come out of the wheelchair for three days – again he was incontinent over this time, causing further issues with his skin.”
The team had to start all over again with Matthew. Being in the hospital without support, Matthew had taken to ordering everything from the daily menu in large quantities. By the time he was discharged, he couldn’t walk because he had put all the weight he had lost back on and his muscles had deteriorated. Matthew would not move from his bedroom and so the team had to take everything to him, including his meals. It was a very worrying time for the team who knew that they needed to do everything they could to encourage Matthew to become mobile again.
Margaret explains, “We began moving the table with his meals a couple of inches from his bed toward his bedroom door, then slowly we moved it down the corridor and then to the dining room door and into the dining room – it took six weeks to get him to walk to the dining room, it was a challenge but it was a significant success and meant that he was getting some exercise.”
Aside from that, Matthew wouldn’t move or interact. He had got lazy with his speech and would make grunting noises. As Matthew knew sign language the team went on to learn Makaton so they could communicate with him better. He was also under the care of the SALT (Speech and Language Therapy) team and over time his speech slowly improved.
During this period of time, Matthew would take six steps forwards and 12 steps back. He needed one to one support and he was very demanding of staff time. He also had medical issues, including cellulitis and required far more support. The team applied for Matthew to be given more support hours and finally, three years ago when he got one-to-one, his health dramatically improved.
Turning his life around
“Since Matthew has had one-toone support it has changed his life around. In total, Matthew has lost over 13 stone. He is only 4ft 5 inches tall, so it is a huge amount. He has some mobility issues as he doesn’t bend his legs, so he struggles to go up and down steps, but he is far more active now.”
“It really is heart-warming to see how far he has come. Before he had no purpose, life was not meaningful, he didn’t have a reason to get up and live. We would be having three to four challenging incidents every day. But now, he gets up and he has a purpose. He has jobs around the house, makes his breakfast, does the washing up – he loves the bubbles. He likes to sweep and mop and tidy. He does his own laundry, self-medicates and is very independent.”
“We make sure he has three healthy meals a day and encourage him to be as active as possible. This doesn’t have to be specifically going to do a sports activity it can be as simple as giving him jobs to do because he likes them.”
“Yvonne has been his keyworker for the last five years. They have a very close relationship and she goes above and beyond for him. She will come in on her days off to take him out. She encourages him to get out every day and he gets paid to do jobs which is a great incentive for him as he puts the money in his own tin and records it.”
“The first time he left the house on his own, we asked him to post a letter at the end of the road – it was a massive achievement as he had never been out on his own. Now he goes out to get his hair cut on his own and he will take his mobile phone. He will also go to the dentist, which is two doors down, so he is getting his independence, but he is going places where he is going to be safe and taking positive risks. He also went to Butlins with two staff and he loved the experience.”
“You can’t rush Matthew though; he does everything in his own time and when he is ready. If he wants to go for a walk, it might not be straight away, it might be an hour or two later.”
“He gets on really well with the other supported individuals who call him ‘little man.’ They idolise him and look out and protect him – they all do have their little arguments, but it never lasts long.”
“He is a very cheeky person; he loves to laugh and joke with the staff. He likes joking about farting which he thinks is very funny. They are all lads here, so they all joke about it!”
“He has pet names for the staff. He calls one peanut, one sharky, and another ‘Mary doll.’ He has also nicknamed one of our male members of staff ‘Susan.’ He also likes to play practical jokes on the team. He will chase you down the corridor or hide behind the corner and surprise you with a cone on his head,” laughs Margaret.
Since Matthew has lived at Heatherington, his mum has also turned her own life around. She has gone back into education and is now working in care and is a fantastic support for Matthew. He has been on holiday to Ireland to visit his family. His sister, Christine said during her visit for Matthew’s birthday, that it has changed her life too as she now has peace of mind that he is receiving the best care.
Thinking outside the box
Although Matthew has made huge progress since he first arrived, due to his autistic traits, he can still experience anxiety and behaviours, but over the years the team have learned how to support Matthew and to de-escalate situations quickly.
Margaret explains, “Matthew is a hoarder – he will keep even little pieces of paper that he is given like treasure. If something goes missing, he gets very upset, very quickly and he can’t change his focus until it’s found.”
“On one occasion, he went into town shopping with Yvonne and he had been wearing some black gloves and he lost one while they were out and then he noticed it was gone. He completely refused to move until he had his black glove back, but they had been all over town and had no idea at what point it had got lost.”
“So Yvonne had to think outside the box and she had to leave him where he was, find a shop that sold the exact same pair of gloves, buy them and then come back saying ‘Silly me, I’ve found it.”
“Another time, he has gone into town for an item but the item was out of stock and so he began screaming that he wanted it so they had to quickly order it online in another shop and get it posted to the service and tell him the parcel will be ready to collect tomorrow.”
“The PBIT team have continued to support us with PBS plans for Matthew as the kind of things he can become focussed on changes so quickly. It is about remaining positive and then thinking outside the box,” added Margaret.
An inspiration to us all
Reflecting on how Matthew has turned his life around, Margaret said, “Matthew has been on quite a journey over the last seven years. For us as a team, he is an inspiration. I still remember how lost he looked when he first arrived at Heatherington; the multiple health challenges he was experiencing and the challenges we had in finding the best way of supporting him; so to see him turn 30, to see him healthy and motivated to get up in the morning because he has a purpose -to see that beautiful cheeky smile on his face every day – is really a wonderful thing.”