The road to nowhere

At Naidex last week, in a flourescent-lit aircraft hanger of a room where the air didn’t move and the colours were bright, a strangely populated world of men in suits, hi-tech wheelchairs, bolshie youth, endearing smiles and earnest faces mingled.

I was only there for the day helping out at the Peoplehub stall, a community interest company set up by people with or interested in personal health budgets. With the help of a few notepads and some Crackerjack-style pens the conversations flowed.

No subject was out of bounds, from ‘What is your favourite cake?’,’ Lemon drizzle thank you very much’, to the ‘Do you mind if I sit here a while?’, ‘Not at all,’ to the baffling, ‘I don’t really like disabled people you know dear’, conspiratorially from an elderly lady in a wheelchair. Awkward silence.

But sometimes we talked about health. And this is some of what was said.

Francis was a beautiful women, high cheekbones, bright red hair, painted nails and pale grey eyes that told a story of sleepless nights and enured grief and a voice that quivered when she told her story. Her daughter Lucy is 20, a young student at a local college. She lives at home and is supported by a team of experienced carers. Lucy has a life threatening condition: she has a tracheostomy, a ventilator, a gastrostomy. Her home is adapted and her care is encompassing. Francis had built up a fabulous relationship with Lucy’s paediatrican; whenever things got out of control this is who she turned to. She had her email, her mobile number and a fast track card to the ward. She only used it in times of real emergency, when the unexpected happened and the situation was grave. But now Lucy is 20 – and Francis no longer knows where to turn. The last time Lucy had to go to hospital the childrens’ ward would not admit her. She was allowed a daybed and only enough time to see an adult urologist. But they didn’t admit her, they inserted a catheter, no scan, no urine results, no blood results and sent her home and said the district nurse would call but she didn’t. Lucy’s condition is deteriorating and her mother does not know who to call.

Parents of children with complex and sometimes life threatening conditions become experts. Experts at navigating a fragmented system, which can incorporate any number of specialists; neurologists, district nurses, GP’s, dentists, physiotherapists, occupational therapists, speech and language therapists, music therapists, urologists, paediatricians, geneticists, cardiologists, incontinence specialists, dieticians, specialist nurses for pressure sores, gastrostomies, vents, people who deliver oxygen, gloves, suction, mattresses and also chase appointments, results, X-rays ,transport and tests. But not just expert navigators – also expert care givers, team managers, administrators and ultimately experts in their child’s life and condition. No one how ever clever, however qualified, however skilled will know their child’s condition the way they will

Francis is one such expert. One among many. She had kept her daughter as well as she could, she had juggled her care and managed her health but she had done that knowing that there was always someone to fall back on when things ran out of control. But her worry now is who will replace that trusted paediatrician.

Parents need someone to talk to, someone that will listen, someone that will take the time to know your child, your family, someone who will realise the enormity of what you face, support you in the decisions you take, and give you the time and the space to take them. They will, when the chips are not just down but disappearing, move heaven and earth to support you, pull strings and press levers, call at untimely hours of the day and sometimes night, give you their email, their mobile number and have a plan for whatever the emergency might be. Many families in Frances’ position spend years lost in confusion until they find that one person and then at transition there is no one to replace them. It can be a very lonely place indeed. Not just lonely, dangerous too.

Only last week in my local paper I read a quiet story of a man with learning difficulties who died unnecessarily in our local hospital. No cause celebre, no big news, just a man with learning difficulties and a death that could have been avoided if someone had taken the time to listen to his life.

People with complex health issues tend not to fit into the current system and there are increasing numbers of them. One palliative care consultant that I have worked with estimates that more than 60% of her patients have neurodisabilities and many of them are reaching and living well into adulthood. Yet there is no pathway for them. Thrown into a world where services are even more fragmented many get lost in the system, and do not emerge until there is a crisis.

Many paediatricians are despairing, I know of one who set up an unfunded transition clinic to force the PCT to acknowledge the need for it. I have also heard of many paediatricians both here and as far away as New Zealand who keep young adults on their books and admit them to their wards rather than turf them into the unprepared adult wards. However, this relies on a ward sister and a system that will turn a blind eye, and in Francis’ case this did not happen plunging her and her daughter into free fall, falling back on a community system that is ill equipped to deal with the complexity of her situation.

Rather than scrabbling around, fitting people into unwieldy systems, relying on good will and making do, surely we should start to plan for the future. It seems to me that looking to palliative care is a good place to start. As a family we have been very lucky to be supported by 2 such specialists – funny, irreverent, lovely and charming but with a capacity to listen and understand, talk about the small issues but discuss the big ones, never interfering but always supporting, able to draw on a network of experts if necessary with sufficient gravitas and stature to make things happen. It is a profession that has much to teach us about the role of the physician today. Holistic and person-centred, unafraid of the big picture and used to supporting people in a world where there are no answers. It is not about new skills, it is not about new money and it is not about reinventing the wheel. It is just about putting the person first and surely that is what medicine should be all about.

Transition should not be a time of fear, but a time of preparation, a celebration that a young person has got this far and there is more to come. This will not be possible until there is a significant change of attitude, and this will not happen until people start listening and then demanding a health service that can meet the needs of the people who need it most.