Video: Mitchell's Story
This story describes a family's reasons why extending Self Directed Support into the NHS is important and useful.
This is our 'story' so far….
It outlines the reasons why extending self-directed support into the NHS is a significant development for our family and how the Staying in Control Project mirrors our vision for the future.
Since 2003, our 16-year-old son has been in receipt of direct payments for the social care element of his care package. This opened our eyes to the benefits of being 'in control' and the flexibility that direct payments afford. As a result, we sought to extend our experience of direct payments into the substantial healthcare element of his package (161 hours per week). In 2004, we approached our local PCT. Although the commissioner was unsure how to proceed and expressed some initial reservations, we were determined to maintain a dialogue. The main stumbling block was the legality of transferring funds to a family-led trust but, with a lot of learning, collaborative working and compromise on both sides, we finally achieved a positive outcome. We secured an individual budget for Mitchell. This new arrangement took effect in September 2008 and we quickly noticed the benefits.
Our Rationale for a Personal Health Budget
Our determination to find a way forward was borne out of frustration and an overwhelming feeling of being disempowered by an inflexible and bureaucratic system. The hospital-based team who provided staff to support us in caring for our son at home was a 'one-size-fits all'. There was little recognition of Mitchell's individuality or the specific needs of our family. Although the healthcare package met his medical needs, the delivery of the support was overtly clinical. Since the provider was technically part of the hospital, the staff working in our home were informed by the same policies and procedures as the staff on the wards. It felt like Mitchell was 'in hospital, at home'. The focus was also on standardised practice rather than person-centred planning. We wanted to put Mitchell at the centre of his care package, seeing him as a whole person (not a medical condition) and empowering our family to live a good life.
Under the management of the hospital-based service, we had no control over the recruitment or retention of the clinical support workers who were in our home 24/7. We wanted to decide who cared for our son and who we welcomed into our home. I firmly believe that the success of home care packages for technology-dependent children relies on the quality of relationships between families and the staff who support them. Imagine spending all day every day with someone you do not like and cannot trust. Good relationships add value to the package by fostering a warm, supportive and collaborative environment in which children and families can thrive.
Training was another issue. Support staff were trained to give Mitchell tracheal suction and change his tracheostomy but the training programme lacked breadth and depth. It missed the point; Mitchell is a person first and foremost and those who support him should be trained to meet all his needs and not just his medical needs. Mitchell's staff had limited access to training resources outside the remit of the hospital.
Mitchell will soon be making the transition from paediatric to adult services. It is a challenging time which would have been made more difficult without a personal health budget. Since the advent of technology-dependence in the community is a relatively new phenomenon (until fairly recently, most young people who used a ventilator would have 'lived' in hospital), there is no equivalent service in our area for adults. With an individual budget in place and a dedicated team of Personal Assistants employed on Mitchell's behalf to support him at home, there will be no dilemma over which service to commission.
Mitchell's Personal Health Budget
Maintaining standards will always be our priority. Our son is very precious and we are highly motivated to ensure he stays well. Having a personal health budget has given us the opportunity to be creative and flexible so that we can manage his health whilst still ensuring he has a full and active life. We have the freedom to make choices and to make the best use of the resources available. We have drafted an Essential Lifestyle Plan that defines what 'good' care means to him. This will be instrumental in how we manage his budget and in future planning. This includes taking him on holiday, altering the shift times to suit his changing needs, recruiting staff who share his interests and being pragmatic about everyday issues.
To summarise, we chose to manage the delivery of day-to-day support (staff recruitment, training and retention and the facilitation of his person-centred plan). Using established figures for staffing and training (Mitchell had been receiving his care package for seven years) we were able to cost these elements for the next twelve months. This formed the basis of his personal health budget. However, we deliberately chose to retain some elements of Mitchell's NHS package. His physiotherapist will continue to treat him on a weekly basis. He will still have access to his paediatrician, nutritionist and occupational therapist and responsibility for the purchase and maintenance of his equipment (ventilator, suction machines, feeding pump etc.) will remain with the hospital-based team. They will also continue to supply all consumables. There would be no discernable benefit if we managed these aspects within Mitchell's personal health budget and the PCT were agreeable to this arrangement.
The text and photo used in this story have been reproduced from the In Control website with kind permission.