I have a complex life-limiting condition and I require a lot of intervention each day to survive, including intravenous feeding, fluid and medication. I require a wheelchair and am cared for at home by intensive care nurses and overnight carers.
I have been receiving palliative care since I was 17 when we found out my condition would shorten my lifespan. A year later I was told I would be lucky to live another five years, but I am still here.
My mum was my main carer for the first seven and a half years I was poorly, until she was diagnosed with a brain tumour. After battling for and winning a six-week interim care package that allowed me to remain at home whilst mum had her surgery and recovered, and after she suffered a bleed on the brain, a stroke and developed epilepsy following the surgery, my package had to be permanently extended.
Despite the Clinical Commissioning Group (CCG) agreeing to pay her in February, mum now provides some care for free, making her my second carer in addition to the nurse to help wash, dress, hoist and support me.
We have been through so much, my mum and me, but the truth is we have both been badly let down by the system. Mum is not appreciated for the millions she has saved the NHS and social care over the years. In her hour of need we had to fight tooth and nail to get care and even now we are constantly battling. Being poorly is more than a full time job, and when a person becomes unwell, in essence the whole family becomes disabled too, as their lives are changed and impacted just as much as the individual who is poorly.
Mum should not have been left struggling. She was working and caring full time, not even getting an hour off. Even through the night she was getting up every few hours to attend to my needs. She could not go to bed until my last drug was administered at 11 pm, and would be up at 5.30 to shower, get dressed for work, and do various medical procedures before she could leave. This was not healthy or fair, but what choice did she have?
I should have had a suitable care package with trained nurses from the start, or if not, mum paid for the care she was providing. In addition, she should have been formally recognised as a carer, had a comprehensive carer’s assessment and support in her own right. Instead, she was left caring at an unsafe level whilst working full time. Mum was on her last legs by the time she was diagnosed with the tumour.
The gaps in care
The problem is, adult services are inherently unprepared for the unique needs of children with long-term and life-limiting conditions reaching adulthood. It is no good to see us as mature adults the minute we turn 18, as we may not be ready to leave children’s services and certainly are not ready to be treated as mature adults.
However this is the way it is viewed. Transition is often seen as a single event and not the process that it should be. It should start at the latest by the age of 13, and is a process that takes many years. Children need to be educated about their conditions, involved in their own care, and allowed to take control bit by bit to prepare them for adult services.
Young adulthood is slowly being recognised as a distinct phase of life requiring a unique approach, but services have not quite caught up yet. This means many fall into the gaps. Look at the rise of Teenage Cancer Trust wards, dedicated to teenagers and young adults with cancer. They have recognised that they require services geared specifically to them. Why is this not the same everywhere? Because there is not the funding for every hospital, service or hospice to have a young adult unit.
The key issue is the difference in criteria. Many young adults, myself included, do not fit the narrow adult hospice criteria. Therefore we miss out on vital support, which some will have benefitted from as a child, but turned 18 with nowhere to transition to. Others, like myself, were too old for children’s hospices but did not fit the criteria for adult hospices. Both groups are left in limbo.
I am fortunate we have The J’s Hospice, a young adult hospice-at-home service in our area who support me and my family. I also received out-of-area care at Jacksplace, a dedicated young adult hospice for a short time.
There are so few of these services. That said, more adult hospices are creating young adult services, so there is progress. Many more adult hospices are also working together with children’s hospices to improve provision for young adults.
I hope more hospices, hospitals and services will develop young adult wards, units or dedicated services that are geared to the unique needs of this age group. However, with funding so tight, I feel that they are struggling to tread water, let alone set up and run more services geared to young adults.
When I made my case to MPs, I had no previous speaking or advocacy experience. I went in with no expectations. I was desperate for the MPs to understand the experience of transition, so I spoke truthfully and from the heart, and tried not to get too overwhelmed. I am very pleased that my speech did make a difference and people did listen. However it was extremely daunting to a 19-year-old me! That said, my mum was far more nervous than I was.
The need to care for young adults
Now, as a 24-year-old, I am far more able to advocate for myself and take the lead in managing and organising my care. I have an amazing medical team who know me well. They do their utmost to facilitate the quality of life I desire, respect my right and ability to make decisions for myself and work with me to achieve both my own and their desired outcomes for my care.
At the same time, in some respects things are harder. There is more expectation on you as an individual to do everything yourself, and as a very dependent young adult I do not have the abilities to be completely self-caring. I also find my social and emotional wellbeing needs get disregarded, compared to the big focus on these in children’s services.
The very sad situation is with my home care. This has got worse compared to my experiences in children’s services, and has been severely damaging to my mental health. I was never made to feel like a burden in children’s services, and even in adult services before mum became ill, because she was providing all the care for free. When the CCG were lumbered with the cost of a 24-hour, intensive care nurse and overnight carer package, I suddenly became an unreasonable person requiring funding no one wanted to provide. Not only that, but I have been forced to live my life by someone else’s rules for over two years. I grab snippets of what life I can, but at the end of the day, I am not in full control over what I do and how I live.
I will, eventually, go onto a Personal Health Budget which I can run myself and that will, in the process, save some money compared to agency care. This will give me back control over my life and who cares for me. I cannot wait.
I am developing a project dedicated to young adults with complex needs and life-limiting conditions, which I hope will come to fruition in 2018. I hope to work hard to champion the cause and improve support, as well as raise awareness of the difficulties we face. I hope to give more speeches, undertake more written work, and continue supporting people.
I hope to write my autobiography. I promised my grandfather the last time I saw him before his death that I would write it, and my grandmother has been badgering me to do it for a long time, so I need to hurry up.
Had I not been poorly I would have qualified as a junior doctor this summer. I am not a doctor, but I can contribute in a different way, as a Patient Leader, patient advocate, ambassador, speaker, writer and campaigner. I will continue doing that for as long as I can, for as long as I live.
I want to be the voice for people like myself. To speak up with and for them. To inspire and empower. To enlighten and enrich. To make my mark on the world and on others.
If my life had played out as my prognosis, I would not be here today. I have got to make the most of every day, contribute what I can, enjoy life’s simple pleasures, spend time with my family and Molly, my assistance dog, and make my life worth living.
For more about Lucy visit Lucy’s Light