Lucinda Parker Roberts was born in London to parents who optimistically thought she might become a world famous show jumper. Little did they know that their daughter would become an ardent advocate for health alongside her passion for writing and art.
When Lucinda was 17 she was diagnosed with the life-changing autoimmune disease, autoimmune hepatitis type 2. She was told by a doctor who will remain nameless that she would never be able to have children, never be able to get life insurance, struggle to get travel insurance and would need a new liver at 30. She was given a life sentence for a crime she never committed and Lucinda spent the next years of her life trying to live as normal a life as possible, but with the caveat, ‘live every day like there is no tomorrow’.
Lucinda read Politics at University College in Durham, but due to the debilitating nature of her illness and the large amount of medication struggled to maintain the standards she had prior to university. Dreams of becoming a Barrister were soon washed away as the workload combined with her health complications began to take their toll.
Marilyn Parker Roberts, Lucinda’s mother had set up The Cook Shop Online after discovering a wonderful American Bread Slicer while travelling and knowing her daughter health difficulties took her on board the company. Since that point, mother and daughter have worked together on and off and had several successes sourcing innovative and environmentally friendly household items, the most recent being the home waste disposal system which is the Smart Cara.
Without the support of her family, Lucinda would probably not be here now as one of the side effects of the illness is severe depression which she has battled with since diagnosis.
Flash forward to now, and after being admitted to the Royal Surrey Hospital last year where she was in a critical life-threatening condition, the decision was made by her consultants to put her forward for a liver transplant. This was not the straightforward process she had hoped for but eventually last December she was granted her wish and is now waiting for a liver transplant.
In her own words:
“A new liver will be a miracle. A chance of a new life, a full, proper life, where you don’t let yourself and others down through your health. A new liver is a new life. A life on my terms. I realise the operation will be taxing (it is described as running a marathon) and the recovery process could be long, but the end result is worth any hardship up to that point and I will feel blessed to be given the opportunity of living a real life”.
We Are Names Not Numbers was set up by Lucinda to raise awareness of the number of people currently waiting for organ transplants in the UK and to campaign for a change in the law to presumed consent.
Presumed consent is alternatively known as an ‘opt-out’ system and means that unless the deceased has expressed a wish in life not to be an organ donor then consent will be assumed.
This does not mean that family will not be consulted, and it is the work of the coordinators in hospitals who have a vital role in the increase in organ donations around the world.
To one individual who said they didn’t want the government to own the individual’s body, Lucinda answered with this:
“At no point does your body not belong to you. Even after death. The choices associated with it are yours and then your families, so it is important to have the conversations now about the what ifs so that they can be prepared for any eventuality.
If you decide to become a donor you are giving the possibility of the ‘gift of life’ to a stranger. Doctors aren’t organ snatchers. We are looking for the generosity of the individual and if the family aren’t happy nothing happens. Currently, we have a large number of people including children in the UK who need organs but there is a shortage. A change in the law wouldn’t change this situation overnight as success stories as in Spain are based on changes to the medical bodies industries internal structure with an increase in coordinators and doctors.”
Over the years there have been several petitions but no change in the law. With Wales showing improved figures since their law change to presumed consent it’s time to reconsider what is stopping this passing as law and maintain pressure on the government to listen to us.
Buy buying a wristband you will be showing support for organ donation and a change in the law.
In Lucinda’s determination to beat the odds, she is trying to complete an MA and as part of her final project she has been researching NHS organ transplantation. Having read a large number of papers on this subject, she has drawn the conclusion that successive Health Ministers and senior NHS managers have been and remain, unwilling to facilitate an increase in the number of organs available for transplantation.
Lucinda is trying to complete her MA in Professional Writing – if you would like to support her please contact her directly at
And if you aren’t already signed up as Organ Donor please consider it.