Key Message: Giving more power and control to an individual can make a big difference to the quality of their life

Mitchell’s mother writes:

When my son, Mitchell, was born twenty years ago, I joined a ‘community’ of people whose lives have been transformed by the birth of a child with complex needs. An MRI scan showed there had been no trauma, no accident, no-one to blame; his brain had simply grown in a unique and disorganised way which would shape and define both his life and mine. Whilst this is Mitchell’s story, our situation is common to many families of technology-dependent children so you will also hear the voices of other mums, the staff who support Mitchell and medical professionals. It is just one example of how the work of peoplehub could change the lives of other families who are disempowered by packages of support that frustrate their needs.
Life changes for all of us but for medically fragile children, change often comes swiftly, dramatically and with life and death consequences. Peaks and troughs are characteristic of this experience. In 2001, Mitchell suffered a medical crisis. As he lay in the Intensive Care Unit with an unstable airway and fighting pneumonia, surgeons performed a tracheotomy. Although we were delighted to welcome him home a year later, we were also acutely aware that his life had changed considerably. A home care package had been agreed and whilst this ensured he stayed safe, it felt like living in a goldfish bowl.

Our experience of being supported by a homecare service

Feeling powerless and scrutinized in your own home is a familiar experience amongst individuals who rely heavily on the support of home care staff. The experience has been described as ‘a double edged sword’. Although support staff can enable someone to remain at home with their family, having little or no control over who fulfils that role, can be immensely challenging. One mum I spoke to said,
‘There are times when your home isn’t your home. It’s not really. It’s so invasive isn’t it? ……You pretend to be someone you’re not….’

Another mum resented the lack of privacy. She said:

‘If I want to drink a bottle of wine on a Tuesday night, I don’t want to think they are watching and judging me for it.’
Until Mitchell was nine, our family had rarely accessed support services so it was a huge adjustment when Mitchell received funding for a substantial home care package. One of the biggest challenges was adjusting to the involvement of a team who had the power to control so many aspects of our lives. The care coordinator chose the people who would provide the support to our son in our home. She dictated the shift times, what staff could and could not do, how they should and should not behave and also wrote the care plan.

I harboured intense feelings of frustration and hopelessness in those first couple of years. Things just weren’t ‘right’. The service took a ‘one-size-fits-all’ approach and since it was commissioned from the acute Trust, it also operated firmly within hospital policies and procedures. For instance, one risk assessment required his regular staff to sign a sheet on every shift confirming they had checked his identity. They did this by checking Mitchell’s appearance against the photo in his care plan. Likewise, the team were prevented from using aromatherapy oils to massage Mitchell at home because of the risk to other ‘patients’. The ‘service’ was central to decision-making rather than the needs of the children and families. It was overly clinical and bureaucratic and it felt like Mitchell was ‘in hospital, at home’. Then a chance meeting with a sympathetic listener cemented my thoughts. If we could take control of Mitchell’s package, we could write a person-centred plan, we could choose the people who supported him and we could manage the rota to fit around our lifestyle. It just seemed to make sense.

The turning point

Although it made sense, it seemed risky to ‘rock the boat’. Drawing the commissioner’s attention to our situation would expose us to scrutiny. We feared a reaction to the fact we were challenging the system. Another concern was the outcome of an independent review of Mitchell’s needs commissioned by the Primary Care Trust to inform the process. Would the reviewers support our view? Contrary to our fears, the outcome was positive. A detailed picture of Mitchell’s needs emerged and the insights gained had an unexpected outcome. One reviewer, Tom, became a trustee for the MG Trust which is a simple governance arrangement or ‘circle of support’. The benefits are three-fold: not only do the trustees offer support and wisdom they also provide independent oversight in a way that feels safe to our family. The PCT can also be reassured that we are getting the support we need to make sound and sometimes difficult decisions.

Advocacy and enablement were also important even though there was no one ‘appointed’ to the role. It was the nature of two relationships that accomplished the brief. What ‘qualified’ our advocates to support us was their understanding of our situation and the fact they truly listened: the ‘power dynamic’ was right. ‘Professional power’ had often made us anxious; knowing an individual can influence the fabric of your life can be very stressful. So, working with people we trusted and who sought to empower us was a tremendous help and is another manifestation of choice and control. They did not take responsibility for us but encouraged us to find and exercise our own power and resources.

It took four years to achieve our goal. Although the process was challenging, it was indicative of the outcome. It was collaborative and empowering. We took an active part in every discussion which shifted the balance of power; we became active agents in our own process. Of equal significance was the commissioner’s approach. She understood our aims and took a pragmatic view. By agreeing to use a third party domiciliary care agency with Care Quality Commission registration to hold an indicative budget, we were complying with the law whilst gaining more choice and control. There was only one stipulation. The Primary Care Trust insisted we employed a Registered Nurse to facilitate the package. There was a degree of anxiety around clinical governance; this proviso helped alleviate some concerns. We also chose to retain some existing home care services.

Identifying the budget was fairly straightforward as Mitchell already had a care package. Once we knew the annual support cost, it empowered us to develop our own business plan. This was approved on the basis that it was commensurate with the existing budget. Personalisation was our main goal but there have been several important benefits. Knowing and working within the budget has encouraged resourcefulness. When three of Mitchell’s carers expressed an interest in completing an NVQ 3, we ‘shopped around’. The freedom to access training from any provider is important. Staff employed by the home care team had been constrained by the system and were reliant on hospital-based training. By choosing a provider with funding available, NVQ training is now underway at no cost to us.

Getting Started

It was agreed that the new arrangement would take effect from 1st September, 2008.There were several important factors that readied us to manage Mitchell’s package. Three experienced and knowledgeable carers chose to join Mitchell’s team. A transition plan was developed. This meant that whilst we trained our new carers, the home care team would continue to staff uncovered shifts. We also used the experience of being supported by the home care team. We reflected on what had worked well and what we would do differently, particularly in relation to managing the team. Would we have been as ready to manage this package if Mitchell had just been discharged from Alder Hey? I doubt it. Although those first few years of home care had been difficult, they had given us confidence. It was a period of adjustment in which we had learnt to cope with the tasks, the machinery and the responsibility of caring for a technology-dependent young person. If our readiness to take control was a lot about timing, it is an issue worth considering as we figure out the complexities of personal health budgets.

Supporting Mitchell is highly technical and intensive. Nursing tasks performed safely and well are integral to the support he receives; he has a gastrostomy, tracheostomy and is on long-term ventilation. But of equal importance is the need to see Mitchell as a person first and foremost who has a wide range of needs. Our first task was to rewrite his support plan and develop a training programme that was personalised to him. We also worked on policies and procedures, recordkeeping, communication systems and much more. This work could have been a huge barrier to achieving our aims, if it were not for the guidance we received. The Registered Nurse and I co-produced a holistic training portfolio using resources from an NHS Long-term Ventilation website, the Royal Liverpool Children’s Hospital and our own knowledge and experience. It was a lengthy task and chapters include: ‘Supporting Mitchell and his Family’, ‘Communication’, ‘Tracheostomy Care’ and ‘Ventilation Principles and Practice’. The work of peoplehub suggests that active citizenship amongst families with personal health budgets will encourage them to share their learning and their resources. Training ‘templates’ that include underpinning knowledge and good practice but are easily adapted and personalised to individual training needs could be helpful.

What has changed for Mitchell?

Four years down the line, whilst much has changed, much has stayed the same. Mitchell still has weekly physiotherapy from the home care therapist who reviews his daily care records. Likewise, he still has the services of the key clinicians. Having an individual budget has not meant cutting all ties; rather we have taken a pragmatic approach to maintaining clinical involvement and oversight whilst exercising choice and control. Professional clinical input has not changed; Mitchell continues to be reviewed on a regular basis and accesses acute services when he is unwell. When I asked his physiotherapist to comment, she told me that despite once feeling sceptical she is now confident that ‘the quality and safety of care hasn’t changed.’

She sees:

.‘…a small team that knows very specifically what Mitchell’s care needs are. Everything is geared to Mitchell’s well-being, happiness and his ability to integrate in all circumstances.’

Her one reservation concerned training. Since the staff were no longer under her direction, she was concerned that this may affect her capacity to train them. We have resolved this by rotating staff onto the Friday physiotherapy session.
What has changed is the way Mitchell is supported. His team has been carefully chosen and personal qualities were valued over experience. We looked for intuition, commitment, enthusiasm and fun. What we found were people who also embraced our aim of providing continuous, person-centred and high quality care. Flexibility and adaptability are high on our agenda. One of our greatest developments, the introduction of a better system of communication, is a good example of how Self-Directed Support can encourage resourcefulness. We now use a free service called ‘Google calendars’ to manage the staff rota, holidays, and audit and review schedules. Being able to view the calendars from any computer is an invaluable resource and has been well received by staff.
I was keen to find out what Mitchell’s team felt had changed. This is what they said. Nicola feels that ‘The focus is on Mitchell now. He’s what binds us all together.’

Angela had similar thoughts. She told me that ‘The team seems more settled, organised and the care we provide seems more family centred.’

Lee’s comments show that Mitchell’s staff had once felt constrained by an inflexible service. He said ‘Since we’ve changed over, the thing that stands out is that Mitchell has more freedom to do what he wants to do. We don’t have to stick to hospital policies and we can make our own decisions about things.’

He also felt that ‘There is good support, encouragement and better communication within the team. We know where we are.’
There are many situations where families’ creative solutions mean spending the budget differently. Our aspiration was simply to recruit, train and manage our staff in the belief that, above all, good relationships are the key to a successful healthcare package. We trust our staff and feel comfortable around them, which had always been our goal.
This is a common goal amongst families who receive home care and it is easy to understand why. Choosing staff you like and trust is infinitely preferable to having staff chosen for you. Less obvious is the link between being ‘in control’ and ‘living with uncertainty’. Whilst none of us can guarantee what happens from one day to the next, for people with unpredictable medical conditions the lack of certainty can be extremely stressful. It is ever present and can change the way you live your life. For this reason, being in control of the things that can be planned for and controlled has become important to our family and seems likely to be important to many others.

The past four years have been extremely positive. Mitchell’s health hs been stable and he is living a full life. I put this down to the

  • continuity of care

  • the competence and confidence of the staff who support him

  • the strength of relationships the partnership between the family, the support staff and healthcare professionals

  • and the fact that good health outcomes and quality of Mitchell’s life are our primary concern.

Life has been good for our family too. We have all benefitted from Mitchell’s greater independence.

Summary of key issues

  • Taking a ‘one-size-fits-all’ approach to home care services can cause individuals and families to feel frustrated and distressed.

  • Overly bureaucratic and clinical home care services frustrate the needs of families.

  • Families seeking to change their circumstances can be deterred by a fear of ‘rocking the boat’. Even when people are dissatisfied with services, it can feel too risky to challenge the system.

  • Being in control can help families live with the uncertainty that comes with ill-health.

  • Supportive relationships that encourage families to use their innate resourcefulness could have a big influence on the success of personal health budget pilots.

  • Personal health budgets enable families to personalise training and encourage creativity and resourcefulness.

  • Having an individual budget does not mean cutting all ties with existing services.

  • Taking a pragmatic approach to the development of personal health budgets will encourage resourcefulness and will facilitate learning within the community of In Control.