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'The NHS needs to start listening to us'

LIFE-CHANGING: Michelle Hemmings in the hospital

A SURVIVOR OF domestic violence who agreed to take part in an NHS organ donor campaign has accused the team behind it of putting her life in danger after revealing her address to the public.

Sheron Williamson, 50, who had a heart transplant in 2011, is residing in a secret location until further notice following a series of violent threats made against her in her former home town.

Williamson told The Voice: “My life was turned upside down in 2011 when I was told I needed a heart transplant. Last year, the NHS press office asked me to support their campaign to raise awareness of organ donation. I agreed because I wanted to give something back.


PICTURED: Sheron Williamson

“I was given just 12 days to live – I had a 14-year-old daughter, I couldn’t die and leave her. I was distraught, but just four days later I was given a new heart. I didn’t get a chance to thank my surgeon (because he died soon after surgery) or the donor’s family. I thought I could be a part of changing how black people feel about organ donation.

“I began working with one member of the NHS press office – my amends were accepted and I was feeling confident. The campaign got great coverage at the start. I heard nothing from the press office for a few months and the new officer that took over was not as communicative. Before I saw any new campaign material, I was being contacted directly by reporters and photographers. The press office was not responding to my attempts to make contact to find out what had been sent out about me. I trusted that my story was being handled sensitively by the NHS, but it was clear that my address had been put out there.

“Within days, my story was all over Facebook and the regional press and my phone was ringing off the hook. My location had been revealed when I had explained that this must be kept secret. I had been living in hiding for several years, first because of an ex-partner and later after being associated with a wanted gang member.”

THREATENED
She added: “Not even members of my family knew exactly where my daughter and I were. Now, after what the press office has done, I’ve been a victim of racial abuse and been threatened.

“When I finally got hold of the press office, they apologised, but claimed I approached them and told them nothing about my situation, which if they knew about, they said I would not have been used in their campaigns because of my past. They had no right to do this, to expose me like that, and what really hurt is that they said my daughter, who is away at university and having a tough time, should stop her studies and start the process of getting my photos removed from Google.

“Black people have a problem in dealing with the NHS because it doesn’t feel it should listen to us. Prior to me collapsing and being told I needed a new heart, I had been complaining to the hospital for seven months that something was wrong, but they didn’t listen. After first being fitted with a pacemaker I went through several procedures that didn’t work. Prior to that, I was fit and healthy, running 30 miles a week. I spent six months in hospital and saw the difference in treatment given to black and white patients.

“NHS bad practice and lack of respect for people of colour are why we don’t engage with them. I used to be on a mission to ensure every black person signed up for organ donation, now I understand if they won’t.”

A spokesperson for NHS Blood and Transplant said: “People sharing their own story is one of the most powerful ways of changing attitudes and inspiring others to take action, particularly when the subject is as important and life-changing as organ donation. We immensely value and have huge respect for each person who takes the decision to share their personal story and these stories inform and drive all aspects of our work. When any individual raises an issue or concerns, we do our best to provide support. The health and wellbeing of anyone we work with takes priority above anything else.”

Williamson has filed a formal complaint with the Information Commissioner’s Office.

Her experience comes at a time when the NHS has increased funding of initiatives aimed at engaging better with black communities in Bristol, Leicester, Nottingham, Luton, Lancashire, Leeds, London, Manchester and Newcastle.

These include the regional Let’s Talk About It Organ Donation Roadshow, organised by RAFFA, the Church of God of Prophecy’s social action charity, to over 30 churches and community venues across the West Midlands.

MYTHS
The aims are to break down myths and barriers to organ donation, including those influenced by religious convictions, and encourage family conversations on the issue.

Maxine Douglas of RAFFA said: “A situation like Sheron’s is so unfortunate and disappointing because the impact can be catastrophic. We can do more, and should do more, especially large organisations like the NHS.

“Organ donation is not a conversation many of us are keen to have. It is great to have these conversations outside of the trauma of a loved one’s death, which is often what brings about the conversation, which can be made more traumatic if the death is accidental or unexpected.“

There has been a steady increase in blood donors from African, Caribbean and mixed heritage backgrounds in recent years to an estimated 17,000 in England, but another 40,000 are needed. The number of donors, both posthumously and during their lifetime, remains low.

Currently, close to 600 black people in the UK are waiting for an organ transplant. An increase in registrations could reduce the number of black patients who die while waiting for surgery – 31 passed away on the treatment table in 2017.

Douglas added: “Black communities are labelled as ‘hard to reach’, which is not true – the NHS as an entity does not understand our cultural challenges.

“The element of trust is a big issue for our communities, not just with the NHS, also with local authorities, national government and the police, which have taken action based on decisions made by people who do not look like or talk like us. This presents a barrier in us coming forward. They, like all public services, need to work harder to build the trust and assurance that has been damaged through decades of poor decisions. Still, our attitude to engagement could be better, especially as we are damaging our own prospects of living longer, healthier lives by dismissing the prospect of becoming a donor and even avoiding conversations about it until it becomes a priority for us, when we need a transplant.”

SUPPORTED
RAFFA’s roadshow is being supported by recent transplant patients from the local area, including Michael Willis and Michelle Hemmings, who underwent successful double lung and lung operations respectively.


SUCCESSFUL SURGERY: Michael in intensive care, left, and holding great grandson O'Shea having recovered from surgery, right

Retired jewellery manufacturer, Willis, 62, underwent surgery in May 2017, after a bout of illness which began with a stubborn cough that did not respond to antibiotics. It then progressed to attack his immune system and confine him to a wheelchair, requiring multiple stays in hospital. He feared the worst when medics revealed that the onset of the lung disease, pulmonary sarcoidosis, meant he needed a double lung transplant.

Pulmonary sarcoidosis causes small lumps of inflammatory cells in the lungs, which if they do not heal and disappear can inflame and stiffen lung tissue, which changes the structure of the lungs, making it hard to breathe.

Willis said: “I thought I was going to die. My weight had dropped from 10½ stone to 6½ stone and I needed building up with supplements before I could even get a transplant. I was only on the register for seven weeks. I was told to expect a wait of at least six months because as an African Caribbean man, they aren’t many of us on the register. The prayers of family and friends kept me – they were my rock. I didn’t know anyone who had had a transplant and I never thought about being a donor myself before. I am so glad that someone did donate – my donor was black and was younger than me. It moves me to tears that someone had to go so that I could live.


ENJOYING LIFE: Michael with wife Patricia and great grandson O’Shea

“We can be loggerheaded sometimes when it comes to being a donor, because we don’t want anyone to cut us up. Many of us believe that if we become a donor and get ill, the doctors would let us die so they can take our organs, but the truth is, the amount of things they have to do to prepare to take someone’s organs, it’s easier to help them recover. I used to think like that. I remember looking at donor cards and flicking them across waiting rooms. My feelings on this are totally different now – each person on the register could save nine lives.”

Willis, who was operated on at the Royal Papworth Hospital in Cambridge, added: “I didn’t go to hospital initially, not because of being black, but more because I’m a man and didn’t take my condition seriously.

FEAR
“I received excellent treatment with the NHS. I was taken to Royal Papworth because it was rated as the best for heart, lung and kidney transplants in the UK.

“I couldn’t have had better treatment in a private hospital. The reason we don’t engage with the NHS programmes is out of fear we won’t be treated right. We have got to get past this to help ourselves.”


Michael Willis, left, Michelle, right and their surgeon respiratory physician, Dr Arvind Rajasekaran

“I think differently now,” added Hemmings, 46, who fell ill soon after having her daughter 22 years ago. She required a transplant after being diagnosed with pulmonary fibrosis – scarring and hardening of the lungs made it increasingly difficult for her to breathe. The self-employed party planner added: “If there were more black donors, I would not have had to wait a year for a transplant. I was given just a year and a half to live. I don’t know if my donor was black – I am looking to make contact with the family.

“I didn’t see too many calls for more black organ donors in the past, but to be honest, when I did see information about it, I would put it in the bin. I was thinking only about myself in those days. I don’t think the NHS has done enough over the years to raise the profile of this issue, but that seems to be changing now.”


Michael and Dr Arvind Rajasekaran speak on organ donation at the Martin Luther King Tribute event in Birmingham

Willis will be sharing his story at An Evening With Michael Willis and Friends, a black tie fundraising dinner in aid of Sandwell and West Birmingham Hospitals and Royal Papworth Hospital, at Aston University, Birmingham on May 18. For more on organ donation, visit organdonation.nhs.uk or call 0300 123 23 23.

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