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© Stories for Good 2017

The diagnosis

June 27, 2017

 

It's not rocket science. If you are feeling sick, you go to a doctor who gives you a diagnosis and tries to fix it. In the UK, despite the current struggles of the NHS, we have one of the best health care systems in the world.

 

My lovely and very much missed papa lived to the age of 93. On the day of his 90th birthday, he underwent a life-saving operation which enabled him to live for another three years. I will be eternally thankful to the team of doctors and nurses who saved his life and for whom, my papa's age, was neither here nor there. He received a diagnosis and within hours was in the operating theatre. When the NHS works, it is a fair and wonderful institution. Treatment is given irrespective of age, gender, class or race. 

 

In the UK, we are also one of few countries who are beginning to understand that mental illness should be diagnosed, treated and funded with the same sense of urgency as any physical illness. Dementia care is one of the best in Europe. Children and young adults with special needs are diagnosed and given specialist education and therapy and there are countless charities helping with illnesses from bipolar to eating disorders.

 

I have had conversations about diagnosing mental illnesses with friends back home and about the dangers of labelling. If you diagnose a child as bipolar, does this help or hinder them? Will they then have access to the same opportunity as other children? I believe they will. I think better understanding and specialised teaching and care can create a better future and help a child reach their full potential. You call a broken leg, a broken leg and it should be the same for mental illnesses and learning disabilities.

 

We've just spent a month with two charities. One specialises in helping People with Disabilities (PWDs) and the other works with children and young adults who are deaf. Both work within poor and marginalised rural communities. I've been saddened but not shocked, by the lack of expertise available. Most families get a vague diagnosis at best and are then sent away without further support. This is where the charities step in, ensuring that families access the government schemes available to them.

 

At a monthly assessment centre, everyone lines up and is split into one of four categories of disability by the doctors. Their disabilities are simplified into either mentally retarded (MR), physically disabled (PD), cerebral palsy (CP) or deaf and dumb (DD). Being blind comes under a physical disability. I am no medical expert, but it is clear that without a detailed diagnosis, many individuals and families are unable to make progress and overcome adversities. 

 

When I visited one young man at his home, he showed clear characteristics of low functioning autism but would later be categorised post-assessment centre as just 'MR'. It was frustrating because he had potential to learn more and develop faster had he access to the right expertise and support. A visit once a month from a special educator is not enough. He is 20 years old and has just learnt to write his name. Imagine the development if he had specialist teaching regularly available to him. His mother tells me what his future might look like. They hope he will get married because otherwise who will look after him once they are gone? In rural communities in India, often the only person who will marry a man with a disability is a girl from a very poor family who cannot afford a dowry. That is the trade off. The girl's family will not need to pay any money and this young man will have someone to look after him. I dread to think how challenging life will be for that young girl. I'm sure it's not what she would have chosen for herself.

 

We also met parents who told tragic stories of their children getting a high fever and, after that, never being able to walk again. They had no idea what had caused this and the medicine the local village doctor prescribed didn't work. After this, they never tried to find out what virus or condition had affected their child. All they know is that their child who was once a happy, healthy toddler is now in their 20s unable to walk or stand up straight and in need of round-the-clock care.

 

Another father we met told us that a local doctor advised they operate on his son's throat to try and 'cure' his lack of speech caused by deafness. No doubt they paid the doctor handsomely for this nonsensical operation which has most likely negatively effected his chances of speaking in later life.

 

We've seen a lot in the last few weeks and we've learned a lot about disability. We've learned a lot about how hard it is for families coping with disability, both physical and mental, in rural India. We've seen firsthand how lucky we are to live in a first world country with world class health care and how this enables us to have the best chance in life. Our access to an early and accurate diagnosis ensures we get the right treatment and we all lead happier, healthier and more dignified lives because of it.

 

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