There are some illnesses, I suppose I might call them conditions, that are very challenging.
So challenging, I’m not at all sure I could cope.
It is one thing to deal with the physical consequences of an illness, or an accident but I think the mental pressures are something we could be better at helping with.
Some years ago I had the privilege of listening to a speaker from Macmillan, the cancer charity, talking about ‘living with cancer’.
The impact it has on the patient and their family. Worry about the future, work, finance, relationships, kids. It drove home a message that I still have on my mind.
Long-term conditions, that are life changing. Intimate conditions that are seldom spoken of. Would I get to the point where I wouldn’t want to carry on? How would I cope?
A lot would depend on relationships. Personal, yes and workplace but the real, pivotal relationship would have to be with the clinicians who were part of my care.
I have seen how intimate those relationships can be at the end of life but what if this were not the end of life, but the end of living, in the way we know it?
It was in the oak-panelled rooms of the House of Lords that I was confronted with all of those thoughts. An unlikely place.
A selection of dignitaries and senior NHS people listened to people talking about their lives, their challenges and their stoma.
If a stoma doesn’t change you life, what would?
Lord Campbell-Savours, our host and a towering presence in the Labour movement and formerly MP for Workington, chose the meeting to share he’d lived with a Stoma, for over 25 years.
@DoctorOstomy, a young doctor, with a Stoma, who’s finished her training and now back at work, thanks to the support of specialist nurses, told us, as a junior doctor, she hadn’t worked for five years but is now back on the rota.
I learned, with the right support, the right people and the right products, life goes on. Work, holidays, going swimming, relationships.
The event, at their Lordship’s house, was the launch of a new document, co-produced with patients, clinicians, and professional groups, detailing the pivotal role of specialist nurses in this most specialist area of care and sets about busting the stigma that still exists.
In medical terms, there is no difference between being diabetic or wearing a Stoma-bag, it is possible to lead a happy and productive life with either. The difference is only stigma.
Epilepsy is a disease that lives in the shadow of stigma, HIV, probably and maybe schizophrenia.
Stigma comes from ignorance. Not always ignorance in the sense of rudeness or aggression, although that happens, but in the meaning of lack of awareness, understanding, education.
There are about 120,000 people in the UK, who have a stoma. The same number who, globally, die from cholera each year.
None of us know where life’s chances will take us. Happenstance just happens. When it does, none of us know how we will cope.
Annie Jenkins, a Penzance woman, took to FaceBook, with pictures of her wearing her Stoma-bag, after hearing a ten year old, in the US, with a Stoma, hanged himself.
Now thousands are sharing pictures of themselves.
We, so casually, think of illness in a compartment and a stoma is about a bag…
… but with that bag must come understanding at the marvel of its science, no little love for what it can do, admiration for the lives it saves and for the specialist nurses that can show us how to make a life, a life to live, flourish, love and enjoy.
This is an excellent report that breaks new ground and must, surely, lead the way for other specialities, to think about the whole person.
News and Comment from Roy Lilley
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Reproduced at TrainingPrimaryCare.com by kind permission of Roy Lilley.