Deep Care

Earlier this week I read an excellent blog post from Kara Chrome, The Chair of Anthropolyatrics where she discussed the need for the role of an adult paediatrician, a conversation that has been rumbling around the world of families like us for sometime.
They would do well to look at the model working for our lovely daughter.

It is no secret that when she came back from residential school she spent a year of her life dying. I slept on her floor and the walls closed in around us. We were rescued from this desperate place by palliative care at Great Ormond Street under the guise of consultant Fin. She came to our house, she saw our distress, she arranged a psychologist for me and night care for Iona. We found a solution to allow Iona to go back to education and slowly life became almost normal. I can still remember my overwhelming distress when our lovely daughter a few years later had to move into ‘adult services’. The team that had provided us with warmth, understanding and deep care would be gone and once more we would be floating around in an unsupported alien world.

But the transition was managed. Fin came with me and Iona on our first appointment to the proposed adult neurologist. When I left in tears having encountered someone once again who knew best and didn’t listen, she found me the kind of neurologist I could work with, someone who listened, who cared and who put quality of life way over quantity of seizures. That next step was replacing herself.

She broke a new pathway to the adult hospice service and took me to meet two different palliative care consultants. I chose the one who made me laugh the most. He resides at the Marie Curie hospice in Hampstead. I go with Iona every 3 months for a visit, we chat, we laugh, sometimes I almost cry as he checks in with both of us. We develop new understandings and I sometimes learn new procedures. We talk about fears, exhaustions, holidays, bloods, bowels, sleep, drugs, skin, life and he always asks if there is anything else they can do to help. As much as I have come to hate hospitals I have come to love hospices.

Yesterday I sent a last minute email about a holiday I will take. A scary time.

This is what I got back this morning, ‘I have popped Iona’s name into a bed slot for the period that you will be away and I will let the team know of the process so please rest assure we will be here as a backup – I hope all is calm during that time –  and enjoy your well-deserved break :)’
This was my reply, Thank you so much. Your help just makes it all possible

It seems to me that when a person with learning disabilities becomes an adult they need a consultant who listens, who cares, who has access to specialists when they are needed, who has time and who takes time to find out who you are and what will help. There is little room for this in big, monolithic hospitals, and GP’s who need the support of paediatricians in childhood are unlikely to manage an overnight change as the young person celebrates their eighteenth birthday. People with special needs are dying younger than they should, their health care is not as it should be. It is time to stop talking, start applying common sense, and truly value the lives of people who have so much to give.

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. Continue reading

So how is your daughter?

Why is it 19 years after my daughter first started having seizures that I am at a loss to be honest when people ask the simple question,’ So how is your daughter?’

I run through my range of responses: the downright dishonest, ’ yes, good thanks’ or the ambiguous, ‘just the same as usual’ or the deflection,‘not too bad but I heard you have had terrible flu’ or the little bit more honest, ‘ oh yes, she’s had an awful seizure,’ followed up with the reassuring, ‘but she’s just gone out to yoga tonight’ or the downright disingenuous, ‘ a little bit peaky’.  Continue reading

We can’t hear the parents

 

All of my daughter’s life I have fought hard to make her life the best it can be. This has taken me from being a laid back individual to the verge of a nervous breakdown and back. I have in my time been labelled neurotic, challenging, difficult, over-protective, pushy, demanding and unrealistic. At times, I may have been some of these things. I do not apologise. And I know, despite the fact we are now quite settled and work well with the professionals around her, I would not be afraid to fight for her should the need arise again. Yesterday we heard that parents of young people in Winterbourne View were amongst the most disenfranchised parents in the country. How did that happen? Continue reading

A Light Touch

For the last 18 months I have been delivering a short talk on the transformative power of personal health budgets. In the same way that has happened in social care it is now possible to have a personal health budget instead of more traditional services like residential or agency care.

The reception has generally been warm. But within every room are the hardline doubters. You can usually spot them at the beginning: arms folded, huddled together, frowning faces.

After the talk come the questions. With recurring inevitability the first question will be regarding financial accountability. Continue reading