adam LIFE Case Study – Pat and Trevor From Kingsheath, Birmingham

 

Pat and Trevor have been working with adam on the creation of the adam LIFE home care technology – her feedback has been taken into account in the development of the site so that it suits the specific needs both of those needing home care and their loved ones, in Birmingham.

When Pat’s son Trevor was born, all was well for the first couple of years, but it then became apparent that Trevor was not developing in the way that other children his age did. By the age of six, Trevor was very unwell. The neurologist who was looking after his care in hospital sat his parents down and told them very starkly that Trevor would be dead within 12 months because his brain would fill up with fluid, and told them that they should take him home and love him.

‘So we took him home and we did love him,’ says Pat.  ‘As a mother, you try to pack everything in as much as you can, whilst you can, with your child. When Trevor was about 14, I went back to the children’s hospital and I said “I don’t know where I’m going. I don’t know what I’m doing. He’s not dead.” You’ve got to plan for the future, haven’t you?’

Trevor is now approaching 50, has physical and learning disabilities and lives in his own home, which has been adapted for his needs. He has doors and curtains that all open and shut at the flick of a switch. There is a phone in the bathroom and a waste bin with sensors that open the lid when you need it. The kitchen and bedroom are kitted out with specially adapted shelves, rails and cupboards that allow Trevor to reach things from his electric wheelchair. Trevor’s home and its many adaptations was even featured in a video created by Birmingham City Council which is still available on YouTube.

‘My son can’t do a button up. He can’t cut food up. On a bad day, he can’t feed himself at all,’ says Pat who is now Trevor’s full-time carer, supported by a group of four paid care workers.

Pat takes responsibility for ensuring that all of Trevor’s carers respond to his particular needs and his personality, explaining, ‘Trevor’s home is like a sterilised unit because he’s got compulsive obsessive behaviours as well. It’s so important to Trevor that it’s kept right. Different people have different standards and every home you go into is different. I think you have to put clear guidelines down as much as possible for your care workers and say, “This must be done.” I’ve got a roster on the wall about cleaning. We have a four week cycle so you keep on top of it.’

‘He likes to go out socially for meals,’ Pat continues. ‘On the Saturday we always give the care worker five hours in the evening and they book a curry up. They’ve got to be able to share a social activity with him. Last week Trevor was having a Chinese in, but he bought the care worker a Chinese too and they sit together and eat, so it makes it much more pleasant.’

‘He listens to classical music and he has different coloured lights on his ceiling as he lies on his vibrating bed to help him relax. He’s a very sociable guy and goes to a day centre five days a week, and he goes to a Headway club for people with brain injuries.’

When Pat started to organise care support for Trevor, she initially went to agencies as she didn’t want the responsibility of finding care workers. She wasn’t impressed. 'Agencies…’ said Pat, ‘well they drove me mad...'

'One lady tried to feed Trevor raw bacon. I think she thought it was Parma ham. Then they used to send the man from Coventry who didn’t drive and if the bus was late, he was late. You can’t have that. You didn’t get consistency.’

Fortunately for Pat and Trevor those days are very much in the past as Pat reflects, ‘I really think things have improved now. There’s a personal touch. These people get to be like an extended family because they know all your business whether you like it or whether you don’t.’

Recruiting new care workers can still be a bit of an ordeal and a worrying time for Pat. . ‘I advertise and I hope for the best. I place ads in shops, in churches and I’ll ring other carers and see if they know anybody.’

Choosing the right care worker is a delicate art according to Pat. ‘You either click with someone or you don’t. I always say to them, “Do a month and we might not be what you want and you might not be what we want.” I haven’t much to complain about my care workers at this moment in time, but I am 71 and I’ve had a heart attack and I’ve just had a mini stroke so I think there will come a time when I’ll be saying to social services you’re going to have to take the care package over. At the moment I’m coping.’

Pat’s view is that person-centred care planning is the only way for people to live and to have some quality of life. For Trevor the most important thing is that his care workers have a sense of humour. ‘He’s got a wicked sense of humour’ says Pat, ‘and you have to talk about Birmingham City Football Club. So I can’t have a Villa fan! You have to have patience and listen. You can understand him if you’re directly in front of him and take your time.’

‘I’m not that interested in qualifications which must sound awful, but I’m more interested in the human being and the fact that they could connect with Trevor and look after him in a kind and compassionate way and have an understanding, because Trevor’s always immaculately smart. He’s paranoid about being clean and tidy. He goes to the hairdressers and has his hair done and he likes a pedicure for his feet.’

Pat manages the process of paying all Trevor’s care workers. ‘I find that very stressful. I try to be fair with my staff. I give them contracts of employment. I don’t have zero-hours contracts.’ Although she is coping with the workload for now she is worried about how things might look in the future. ‘Nobody goes on for ever. I think it’s something all carers are afraid of - their own mortality. Trevor’s Dad dropped dead at 46 and I do think the stress of caring leads to health problems.'

Any new technological solutions to organising care will need to give Pat and Trevor peace of mind, because as Pat explains: 'I always like to know that the care worker lives in an 8-10 mile radius because, if you’ve got weather conditions and they can’t get here, what does Trevor do?'

...It’s no good having somebody living miles away, like in Sutton Coldfield and then you have some snow drop in Birmingham and everything stops. Well a human being still needs a hot drink and making sure the cistern is still working. It’s good if you can get people near where you live for practical reasons.’

Pat has worked closely with Birmingham City Council over the years to help develop services for carers and she has been involved in helping to shape the new technology platform adam LIFE due to be launched in Birmingham in November 2016.

As Pat says in her YouTube video appearance, ‘It’s up to us to be pioneers to make Birmingham a better place for carers in the future for all the carers who follow on behind us.’

If you would like to find out more, why not visit the adam LIFE site?