A life changer

Often in the last 2 years I have stood in rooms full of people and talked about how my daughters personal health budget has not just changed her life but changed mine too.

I was brought up in a Scottish village close to nowhere, with a view over a flat top island, silver sands, and stunning sunsets when the sky turns bronze and burnished red. A place to roam free with bikes and dens and burns, sunburned noses and freckles in the summer, wellies and woolly hats in the winter. There was one school, two churches, three pubs, endless skies, soaring seagulls and salty storms. Lobsters crawled from pots across kitchen floors, errant dogs chased sheep, and bog myrtle, sea pinks and rowan berries marked the seasons.

Somehow in the 80’s I traded that for a world of glitz, glitter, long hours and big budgets. I moaned at the time, how facile it was, how flaky I was and how frankly I didn’t fit in. But there were long lunches in mews houses, parties at the Savoy and intense negotiations with media houses. It was what I did, who I was and it paid the ever-growing bills.

As a women I thought I could do it all: have my children and a career, plans were laid and dreams were hatched. But all that changed when my second child was born, a beautiful bundle of fury and rage, a baby who would grow up to charm us but also sometimes to challenge us

I gave up work, it became impossible to do otherwise. I had cut down my hours to a point where I was never in the right place at the right time and my daughter never slept. I would crawl from home to work and work to home. There was no let up and no help.

Social workers would come round and say, ‘it’s all right for you”. Big house but they didn’t see the big mortgage. Articulate but they didn’t see the despair. Nice area but they didn’t see the isolation. Lovely kitchen but they didn’t see the walls close in. Good education but they didn’t see the waste.

Depression is an ugly word but an uglier feeling. It gets inside your head and washes through your veins. It makes your skin creep and your intestines twist. You wake up in the night and want to die. It’s harsh and cruel, unrelenting and unforgiving.

It was no real surprise when the Royal College of General Practitioners, as reported in Learning Disability Today, revealed that carers are at greater risk of developing depression or anxiety than people in the general population. The RCGP estimates that about 40% of carers are thought to be at risk of depression or stress because of their caring role. They argue this is where GPs come in. They are often the first port of call for carers and so they need to be able to spot if there is an issue and offer relevant and timely support. In addition, the new clinical commissioning groups (CCGs) have to ensure that depression and anxiety services for carers are prioritised in their areas. 

But what will these services look like? A prescription? An appointment in a gloomy clinic with out of date magazines, peeling walls and dirty windows, a psychologist who after establishing that you are not going to commit suicide discharges you for other needier patients? A block of 6 sessions of CBT?

For many parents of disabled children the depression will be complicated. It has been variously described as ‘chronic sorrow‘ (Roos S. 2002)  or a ’ ambiguous loss’ (Boss,P 2000) ‘malignant sadness’ ( Wolpert L. 2006). A place where equanimity can be achieved only to be challenged by the smallest event, another child’s progress, a birthday party or the biggest hurdles like transition from one school to another, from childhood to adulthood. It lies ready and waiting to derail and destabilize.

A system to help carers will, therefore, have to be flexible and accommodating, warm and welcoming. Many parents talk movingly about the support they get from other parents, feeling they are the only ones that can truly understand. Others talk about amazing relationships they have developed with psychologists, where they will walk and talk, off load and recharge. A fluid relationship that can adapt and survive built around the parent and not around the strictures of a hospital appointment system .

Since my daughter has had her personal health budget, at no extra cost to the local authority, and she is receiving all the care she needs in a way that suits her and us a her family, I am no longer doing daily battle. There are still problems that arise and challenges to be faced, but on a day to day basis I know she has the support she needs to lead a good life. That has allowed me to go back to work, take holidays, get my hair cut, make appointments, go to films, meet friends, sit in cafes, walk the dog, do the shopping, go to conferences, read books, cut the grass. I have a good life and so does she. I wonder how much easier it might have been if there had been right from the start a little bit more listening, a lot more understanding and easier access to the right services. I wonder how much of the depression and the anxiety is caused not by the disability or the complex illness but what comes with it – or rather doesn’t come with it?

However much you adore your children and I do, having a disabled child is a life changer. It allows us to live life more fully, engage with a new and deeper reality, embrace the unknown and live in the present. But only when you can, when someone is listening, standing beside you rather than against you, when you stop fighting a system that doesn’t work, gain a little choice and control, and take tentative steps back to a bit of the life you once had.