Young people with Parkinson’s need government help not hindrance

In 1817 James Parkinson, a London doctor, published his Essay On The Shaking Palsy. Sixty years later a French doctor, Jean-Martin Charcot, referred to “la maladie de Parkinson” giving rise to the term Parkinson’s disease.

Today, according to the charity Parkinson’s UK, the condition affects more than 127,000 people in the UK. It is well-established that the three main symptoms of Parkinson’s are the tremor, muscle stiffness, and slow movement. There is no cure.

Dr Parkinson’s observations were based on six cases and it is telling that every person he studied was over the age of 50: many people develop symptoms of the disease when they are older.

There are thousands of people of working age who suffer from Parkinson’s, too. I am delighted to have secured an adjournment debate in parliament that focuses on awareness of the needs of the young-onset Parkinson’s sufferers.

For younger people, securing a firm diagnosis is the first issue; the charity Spotlight Young Onset Parkinson’s Disease argues that many can go undiagnosed. This is partly because of the nature of the symptoms; as Dr Parkinson himself wrote: “So slight and imperceptible are the first inroads of this malady . . .” Once people become aware of the nature of their condition, a whole new set of challenges are presented.

The pressures of family and working life are felt on top of the symptoms of the disease, which can vary every day; individuals are never sure what the next day will bring. Many will also suffer from depression and anxiety; access to mental health support is crucial.

In England prescription charges remain a bone of contention. A pre-payment certificate to lower cost is the best option, but England would do well to follow the lead the Welsh government set in 2007 by abolishing prescription charges.

Our social security system needs to be more sensitive to those with degenerative conditions. An applicant for the employment and support allowance will be subjected to a work capability assessment which, because of the fluctuating symptoms of Parkinson’s, will not always provide an accurate picture. In addition, too many people applying for personal independence payments have had to appeal against the initial decisions to be awarded the appropriate level of support.

The government’s aim is to halve the disability employment gap, but there has to be a recognition that those of working age who have Parkinson’s will need support when they leave the workplace and that returning will not be a realistic option for them due to the nature of the condition.

Dr Parkinson combined his activities in the medical sphere with political campaigning. He wrote pamphlets under the pseudonym Old Hubert to argue for the needs of those living in poverty and put the case for political change.

There is no doubt he would have spoken up in modern times for the needs of those who suffer with the disease to which he gave his name two centuries ago.

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