KAREN ANDERSON – Who Cares?: Comparison of life expectancy statistics reveals 'shocking and shaming' issue that needs to be addressed urgently

This morning I had to do my latest bowel screening sample – known as ‘poo sticks’ in our house. Like most forms of screening, there are unpleasant aspects to it, but I rationalise it by thinking it’s a couple of minutes every two years and it might just save my life.

Indeed, there can be few amongst us who failed to be moved and inspired by the life and recent death of Dame Deborah James – tireless campaigner raising awareness of the importance of early detection of cancer in improving outcomes through her podcast ‘You, me and the Big C’, media appearances, books and fundraising activities.

In my own family we have more than one member who has reason to be grateful for the letter through the door calling them in for one or other type of screening which revealed a tumour that was subsequently successfully dealt with through operation, and radiotherapy.

So, I am a confirmed advocate of the need to attend those appointments no matter how nervous and uncomfortable they make us feel. A few moments which could save your life.

Then it suddenly occurred to me that our boy, with his sensory issues and germ phobia, and dislike for attending appointments with people he doesn’t know in places he is not familiar with for reasons that might be difficult, would be very unlikely to be able to access health screening. It gave me a right wobble I can tell you!

Reality is that there is very little we can do at his stage in life other than talk to him to try to explain the benefits, but he would require chapter and verse on what would happen and how could we make the possible outcome more attractive than the undoubted traumatic

events needed to get through the process? I have no idea.

He has been party to the health journeys of those in the family that have been though the cancer mill, but if anything, that has made him more scared than reassured. Although he appreciates the positive results they have obtained, the detail of the treatment is impossible to gloss over, and he is an adult now and deserves the respect of having his questions answered honestly.

These thoughts lead me to have a browse for information about disabled people accessing health screening, not a straightforward search. But I ended up on the World Health Organisation’s website and was not in the least reassured unfortunately. Attitudinal and physical barriers including prejudice, stigma and discrimination, location, physical access including lighting and signage, lack of staff training and policies. In addition, there are communication barriers owing to jargon and thoughtlessness, and financial barriers as many disabled people have limited funds to travel to appointments etc.

The starkest statistic I saw was from Mencap who say that life expectancy for women with a learning disability is 18 years shorter than that of women in the general population, and it is 14 years shorter for men with a learning disability. It is unfortunately easy to imagine why with poor assumptions of need and lack of understanding or valuing disabled lives equally to non-disabled. It’s shocking and shaming and must be addressed urgently.

Our boy deserves to have services designed to accommodate him and not have his life shortened because his disability makes it difficult for him to access the services he is entitled to.

Karen is Mum to an autistic son in his twenties and campaigns for the rights of unpaid carers to be supported in their caring role and involved in the decisions that affect their lives and the lives of the people they care for. You can find her on Twitter @Karen4Carers.

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