Building on a people’s movement for change…

Stephen’s Story

In 2008, Stephen had an accident and sustained a spinal injury, which left him tetraplegic and completely paralysed from the shoulders down. After 3 months in intensive care and a further 8 months at a rehabilitation unit in Sheffield, Stephen returned home in August 2009. The period following Stephen’s return home was his darkest period. In rehab, the focus was all on what Stephen could do and his partner, Nicola, was trained in the specialist care he needed. Much of the focus was on supporting them to learn what was necessary to be able to live a full and active life in the future. This changed when they returned home.

They chose a larger care agency because they were assured it would be better able to cope with Stephen’s needs, but according to Nicola it was ‘hell on earth’. There were early warning signs that things would not work out. Because Stephen’s care plan had not been explained comprehensively that it should cover all his needs, it only focused on the physical side and did not say anything about Stephen as a father, partner or other parts of his life. Before Stephen’s accident he renovated houses and was a part time house-husband but there was no mention of the support he might need to continue his interests or simple fatherly tasks like school runs, mealtimes, bath times and bedtimes! Agency staff were instructed not to do menial tasks considered social care such as bin emptying, light bulb changing or dusting, even though they were there to support Stephen as an active family member.

Stephen was getting more and more depressed and Nicola was getting more stressed because she was also working full-time. Stephen felt that they were not getting value for money. The agency’s recruitment process was not personalised; there was nothing about Stephen in the process for staff to connect with. The agency would often send carers who couldn’t drive which meant that Stephen couldn’t get out and about.

. In his first autumn and winter at home, Stephen did not leave the lounge for up to three weeks at a time. He rarely asked for care or support because he didn’t relate with the care team and didn’t want them in his house. While the agency ticked every box as far as the Care Quality Commission is concerned, no one ever asked Stephen’s opinion about his care. No one took him seriously as a customer and purely from a health point of view, Stephen had three chest infections in his first three months at home because he wasn’t getting the passive exercises he needed and was stuck in the lounge not getting any fresh air.

Fortunately, Stephen had a review after three months when it became clear that he could become part of the Nottinghamshire Primary Care Trust personal health budget ‘In-Control’ pilot. Stephen’s personal health budget was a year in the planning. The focus of his plan was to find a purpose and a meaning in his new life and to ensure that Stephen could be actively involved with his children again. They’d found the accident very hard and had stopped spending time at the house; it was important to Stephen and Nicola to create a situation that was comfortable for them.

Stephen has hired his own team of dedicated carers and doesn’t look to employ people who necessarily have care experience. Stephen prefers to train staff to accommodate his own specific needs and looks for people who respect the fact that he is in control and are willing to listen and take direction. Stephen decides who works, and when, based on his plans for the week. The carers also feel part of a team and can help each other by covering holidays.

Stephen provides comprehensive professional training for all his team but this is only completed when Stephen is comfortable with their level of competence. The agency would often send untrained carers who did not have the skills and confidence to meet Stephen’s needs. For example, he cannot cough and needs to be assisted to cough. On one occasion, the agency sent a young woman with only 6 months experience of generalist care who did not know Stephen well enough to care for him alone overnight. At the same time, when Stephen’s care coordinator realised that the family were going out for lunch without a carer, she considered it a safeguarding issue despite the fact Nicola is fully trained and more knowledgeable about Stephen’s care than anyone!

Nicola feels that they would not have been able to manage a personal health budget when Stephen was first discharged and came home. She feels that it helps to have a care package in place for the first six to eight months and that you can use that time to put your own personalised package in place. She says running a personal health budget for a large package is a lot of work; you have to go into it with your eyes wide open. However, there are real advantages. Although funding is the same as previously Stephen is able to convert this in to more variable and flexible hours of support than he could with an agency, which has enabled him to hire two gardeners and get back outside. He can direct them and it gives him something he can do with his youngest daughter. This means that Stephen can be a dad without Nicola always having to be around because he needs two to one support when he is in charge of his very young daughter.

Stephen has also used his PHB to buy an iPad and a bracket for his wheelchair so he can browse easily. This allows him to use the internet and shop and, most importantly, to read a bedtime story to his daughter. He has also bought an iMac with voice activated software. The iMac is fast enough for the voice activation to work quickly and smoothly and this means that Stephen can do simple things like reading a newspaper with relative ease. He has also bought a specialist hoist, which allows him to be hoisted into his classic convertible car, which he is now able to enjoy once again. Finally, Stephen has used some of his personal health budget to buy a powered 4×4 wheelchair, which enables him to have a more active outdoor life style, which his current wheelchair does not allow. For example taking his young daughter on the beach or across muddy footpaths on country walks.

Stephen and Nicola are so passionate about self-directed support for people with long-term health conditions and disabilities that they are using their lived experience of personal health budgets and Nicola’s extensive experience in recruitment and human resources to run their own personal health budget agency. They offer a ‘third party’ arrangement for people who don’t want or are not able to have a direct payment.