We are finally championing our own lives

In the latest of a series of blogs on Personal Health Budgets, mother Angela Lane explains how they come with their challenges but working through the teething problems is well worth it:

My daughter Cherry has Rett syndrome, which is a rare condition that affects brain development and causes physical and mental disability.

We have had a Personal Health Budget for Cherry since 2013, the benefits of which are profound and mean we can show people that Cherry does have a voice.

It’s taken some time for me to write this blog, as there are periods in life when multiple demands sap me of time and energy for my own projects. But writing about my daughter’s life and the issues we overcame to set up her personal health budget is hugely important to me, especially in light of recent negative press about them.

Read Angela’s blog in full on our Personal Health Budgets pages.

Direct payments have been available in social care for some time now, and Cherry was originally awarded one in 2008. Initially I was uncertain that I would be able to cope with all the paperwork and the complexity of the system, so I was delighted to discover that this new flexibility completely transformed Cherry’s life.

At first we only received part of her care package as a direct payment, but it worked so well that we started to manage it all ourselves. It was at this point that it was recognised how complex Cherry’s health needs were and she was assessed as being eligible for NHS Continuing Healthcare (CHC).

For the next five years we continued the successful direct payments model, with CHC paying for it, before we received notice that a Personal Health Budget was to be activated for us. I can’t say that the process was smooth; we were guinea pigs and our staff suffered from the teething problems in the finance department from delays making the payments to us. However, my experience and determination that it could function well – Cherry and her team are too precious to give up on – meant things began to resolve, and the new system took its first independent breath!

The teething problems sometimes kept us awake at night, but let me be very clear: it was all absolutely worth it for the chance to make my daughter’s life truly supported and liveable.

I considered writing a ‘what if she hadn’t had a personal health budget’ blog, and it soon become clear how appalling our situation would be. Cherry’s health – always an uncertain commodity – would be much more problematic. As it is, we manage to keep her out of hospital and in a high state of wellbeing, despite many fluctuations and complications.

Then there’s the wider impact. My husband’s health and my own mental health may not have survived without the introduction of the personal health budget. I know a number of aging parents who have older daughters with Rett syndrome, and they suffer with increasingly complex health issues themselves which can make family life difficult.

Through Cherry’s personal health budget, we have a solution which many see as enviable, although we have worked very hard to achieve it. Working in partnership with Cherry’s brilliant team I managed to squeeze in a week’s holiday at the start of October this year, and then attended the annual Rett Family Weekend with my husband and Cherry. We caught up with all our friends in the Rett family and learned of new and useful research developments.

Without the personal health budget, the rich diversity of our lives would have been clipped to the monoculture of lifelong carers and Cherry would not be viewed as an independent entity with a personal life and of value in her community. Her team have helped in this, most spectacularly with the regular episodes of a monthly newsletter, the Cherry Chariot, written by one of her carers to keep her community updated.

I am saddened by headlines saying that people spend money from personal health budgets on luxury items, which is so far from the reality.

Our personal health budget is agreed with health care professionals and our local Clinical Commissioning Group, and it is set out in a care plan that meets Cherry’s health outcomes. We have the most cost effective approach to support the real and complex needs of our daughter. Our costs are significantly lower than the cost of being in a care home, which would be the alternative for Cherry.

We have become our own experts in this field and I am proud that our local Continuing Healthcare team treats us with respect, as equals. I always work on the principle of partnership, and I hope that this partnership continues to be as successful as it already is.

Through the personal health budget we are finally at a point where we are championing our own lives. This is one contract definitely worth signing.

Angela Lane

Angela Lane trained as a contemporary dancer and choreographer.

Her career in dance took her to Eastbourne where her second daughter Cherry was born and eventually diagnosed with Rett Syndrome

While her daughter was at school, Angela joined the SEN Forum for East Sussex Education Authority and through her Transition to Adult Services she worked with researchers and consultants to help inform policy in this area, eventually becoming one of the parent carer representatives on ESCC Learning Disabilities Partnership Board (LDPB).

Angela went on to lead projects in Intensive Interaction (Interact Now) with Sussex Partnership NHS Trust, and Person Centered Approaches projects for the LDPB. As creative director of these projects, Angela worked with a team whose aim was to discover the conditions and contexts in which person centered approaches, Total Communication and other contemporary methodologies can be successfully used to complement the inherent ability of individuals and their supporters to have the life they want.

Following completion of a creative writing certificate at Sussex University, Angela went on to become an associate tutor in the service user and carer network at the university, teaching and supporting the development of the social work undergraduate and master’s degrees.

During this time she worked to establish her daughter’s Independent Living Trust and has experience of both the social care direct payments scheme and the new NHS Personal Health Budgets scheme.

With the progression of her father’s Parkinson’s disease and dementia, Angela is interested in developing her skills to support families and people encountering dementia in their lives.

Angela continues to have a deep interest in dance and writing and considers everything in her life to be connected. Now a grandmother to two beautiful grandsons, she feels she is enjoying the rewards of a long life.