Around three million people in the UK have Chronic Kidney Disease (CKD) – but a third of them may not even be aware they have this serious condition.

Today is World Kidney Day and Hull University Teaching Hospitals NHS Trust is joining the global campaign to make sure people understand why kidneys mater. 

What do kidneys do?

• They remove toxins, excess water and waste products.
• Kidneys play a vital role in regulating your blood pressure.
• They activate vitamin D to help keep your bones and muscles in good shape.
• They’re essential for a healthy body.

Why you shouldn’t ignore your kidneys

Most of the time, kidneys work normally without any issues but sometimes they can be damaged or stop working so well. This is known as chronic kidney disease.

CKD is a serious condition that affects over three million people in the UK and up to a million of these people may be undiagnosed. Find out how you can improve your kidney health

Early diagnosis and treatment, as well as changes to your diet and lifestyle, are vital and can often help slow down or prevent any further damage. However, if CKD goes undetected or is not managed well, it can progress to kidney failure, which is fatal without treatment. Patients with kidney failure will need regular dialysis or a kidney transplant.

Some other types of kidney disease, including inherited conditions, are not preventable but can be managed.

The BIG impact on your life

Having kidney disease affects more than your physical health. It also impacts your social life, relationships and emotional wellbeing. Imagine visiting the hospital three times a week for a four-hour dialysis session – how would you fit this around work, or looking after children, or going on holiday?

Are you at risk?

Although anyone can develop kidney disease, here are some factors that can increase your risk:

• Diabetes
• High blood pressure
• Heart and circulatory disease
• Family history of kidney disease
• A black, Asian or minority ethnic background could mean an increased risk of developing kidney failure more quickly.

Kidney disease and Covid-19

The global pandemic has changed kidney patients’ lives in many ways. Considered to be vulnerable, they face a higher risk of serious Covid-19. If they catch the virus, they are more likely to be seriously ill or even die.

Many kidney patients have been shielding for most of the last year. But many dialysis patients can’t shield at home. They have no choice but to go to hospital several times a week for their life-saving treatment. And those with a kidney transplant or taking immunosuppressants still have to attend their regular medical appointments, despite being less able to fight the virus because of the drugs they take.

As well as affecting current kidney patients, Covid-19 is also creating new ones. Up to a quarter of people who have Covid-19 and receive ventilation in intensive care end up with severe acute kidney injury (AKI) and need dialysis. AKI is when your kidneys suddenly stop working properly. This could cause anything from a minor loss of kidney function to complete kidney failure. Only time will tell if people can recover from this.

This is serious. Kidney disease is no joke. It can’t be ignored. Kidneys matter.

A health care assistant who spent almost two months fighting for life in his hospital’s Intensive Care Unit after contracting Covid-19 is returning to work.

Neil McDonald will return to the Endoscopy team at Castle Hill Hospital later this month after making a full recovery from the virus.

As he prepares to return to a job he loves, Neil said: “I feel brilliant now, back to my normal self.

“I cannot wait to come back to work, to see my team and get back to some normality.”

Health Care Assistant Neil McDonald

Neil was diagnosed with Covid -19 shortly after he began to experience symptoms of the virus at the end of April.

He said: “My symptoms became rapidly worse when I was first diagnosed. I was admitted to hospital three days after finding out my positive result. Everything after this happened really quickly. “

He was admitted to Hull Royal in May but his condition got so bad, he was rushed to the hospital’s Intensive Care Unit two days later.

And he stayed there for 60 days.

He was put on a ventilator and sedated as the Intensive Care team battled for five weeks to save his life. His family and workmates and friends were told to prepare for the worst more than once as his condition worsened time and time again.

He said: “I remember everything about my time in hospital apart from the time I spent on the ventilator in ICU.

“I remember feeling extremely frightened – it’s a daunting place to be.

However, Neil’s condition finally improved enough for him to move off the intensive care unit at the start of July to continue his recovery on Ward 5.

He spent a week on the ward before moving to the Complex Rehabilitation Unit on Ward 9 at Castle Hill to build up his strength before he was able to go home to continue his journey, cheered out by his friends and colleagues who had looked after him.

Neil is now back to full strength, with no lasting effects from his illness.

“I want to say a massive thank you to everyone who looked after me,” he said. “Without the staff in this trust, I would not be here today.

“And to my own team – I’m really looking forward to coming back to annoy you all again.”

Endoscopy Sister Lucy Holgate said she and the rest of her team were delighted to be welcoming Neil back to work.

She said: “We were so, so worried about him and there were many times when we braced ourselves for the worst, thinking he wasn’t going to pull through.

“But he did and I can’t tell you how glad we’ll all be to have him back with us.”

Here’s Neil leaving hospital in the summer

Researchers at Hull’s hospitals have been congratulated for their major contribution to the global effort to find solutions to Covid-19.

Hull University Teaching Hospitals NHS Trust has undertaken 27 Covid-19 studies since the start of the pandemic, including trials of potentially life-saving treatments, ways to ease the severity of symptoms, rehabilitation after infection and vaccination.

The trust played a major role in the global trial of the Oxford/AstraZeneca vaccine, with one in every 45 participants recruited by the Hull team.

James Illingworth, the trust’s Research and Development Manager, said: “Over the last 11 months, healthcare organisations across the world have turned to research for answers in the fight against the Covid-19 pandemic. Our trust is no exception.

“We want to acknowledge the immense efforts of our research and non-research colleagues who have worked hand-in-hand in often challenging environments to ensure patients get access to new treatments and the best possible care.”

The trust’s Research and Development team was asked to prioritise National Institute for Health Research (NIHR) Urgent Public Health research and Covid-19 trials at the start of the pandemic.

Since then, more than 2,500 participants have been recruited to trials to help find answers to how the virus works and the progression of the disease.

Trials, such as the national RECOVERY study, have also been started into potential treatments, such as Dexamethasone, and the trust was one of the first hospitals in the UK to offer Remdesivir to patients with moderate or severe cases.

The team has also been focused on longer-term research projects to examine the rehabilitation of Covid-19 patients after stays in hospital and how people recover from the virus.

Other trials include work to understand the nature and impact of the disease and Public Health England’s SIREN study, investigating antibody protection in health care staff who have already contracted Covid-19, for which our trust was one of the top recruiters.

The trust is the top recruiter in the country in the CLARITY-IBD study which is looking at the development of antibodies to Covid-19 in UK patients with Crohn’s and Colitis.

Hull researchers are currently teaming up with others across Yorkshire and Humber to tackle misinformation around the virus – and, in particular, the vaccine – to ensure people in Black, Asian and Minority Ethnic (BAME) communities can make informed decisions based on the facts.

Despite the necessary focus on Covid-19, trust researchers have recently resumed studies involving non-Covid research as the NHS starts to look to services beyond the pandemic.

Details of the Research and Development work undertaken at Hull Royal Infirmary and Castle Hill Hospital will be outlined at the meeting of the Trust Board on Tuesday.

Mr Illingworth said: “Our ability to deliver the Covid-19 research agenda at pace and scale has been testament to the dedication of our staff.”

The hospital team springing into action to protect hospital staff and patients as the UK’s first cases of Covid-19 were confirmed has been thanked for their immense contribution, one year on.

Security staff erected and maintained a cordon around Ward 7 to protect all staff and patients at Castle Hill Hospital as the first two patients with the virus were brought to Castle Hill Hospital in Cottingham from York in January 2020.

Now, Ron Gregory, Security Manager at Hull University Teaching Hospitals NHS Trust, has thanked the team for their efforts not just in the early days but throughout all three waves of the pandemic so far.

He said: “The security team are few but are a true force multiplier. Only a handful are directly employed by the trust with most contract staff.

“However, ever since that very first day, the security team stepped up and responded immediately, drafting in additional resource at the drop of a hat, providing a security cordon, facilitating a buffer cordon around Ward 7.

“It proved to be just one example of the type of ‘can-do’ attitude the team has.”

As well as dealing with security relating to the pandemic, the security team has also mobilised a new contract seamlessly, bringing improvements and enhanced security provision at both Hull Royal Infirmary and Castle Hill overnight.

They have responded to issues from road blocks to diversions and cordons around both sites to accommodate everything from the new vaccination centre to ongoing construction work.

They’ve also been quick to respond to distraught patients and relatives, respond to fire alarm and provide reassurance to members of the public at all times of the day and night.

Ron said: “The team have been working to ensure value for money while updating aging security infrastructure, working with staff in our Capital and Estates teams to enhance security technology such as CCTV and access control at both hospitals while keeping the daily tasks running smoothly.”

He said the team had worked an extra 25 per cent of their hours last month alone, not counting the early starts and late finishes which had not been claimed as overtime.

In a direct message to his team, Ron said: “This team has many of the same faces from when we started on a road of transformation three years ago, but the work ethos and positive outputs is immeasurably improved over that time, despite the challenges and changing landscape.

“You are all a credit to the Estates, Facilities and Development Directorate, the trust, and the NHS. Thank you.”

Hull University Teaching Hospitals NHS Trust is easing some visiting restrictions from next week as rates of Covid-19 infection continue to fall.

From Monday, one named visitor will be able to visit a relative or friend at Hull Royal Infirmary or Castle Hill Hospital by booking a slot of up to an hour with the ward sister or charge nurse.

The visitor must be the same person for the duration of the patient’s stay in hospital and cannot be swapped between different family members or friends to reduce the risk of transmission of the virus.

Chief Nurse Beverley Geary said: “We understand how difficult it has been for people not to be able to see their loved ones. We thank people for understanding the safety of our patients has been – and continues to be – our priority during the pandemic.

“The infection rate is now dropping and we’re seeing fewer people admitted to our hospitals with the virus so we are now able to ease some of the restrictions we have put in place to protect our patients.

“With care homes admitting visitors once more from Monday, we feel the time is right to allow one visitor per patient.”

Visiting arrangements for children’s wards, Intensive Care Units and maternity services remain unchanged and people attending the trust’s Emergency Department must attend alone.

However, the restrictions currently in place will be kept under constant review.

Beverley Geary said: “As people would expect, restrictions will be re-introduced to protect patients if we see cases rising in the coming weeks and months. Likewise, if cases continue to fall, we will ease visiting restrictions further.

“For now, we thank everyone for their patience and understanding and ask for their co-operation with the rules we have in place to protect our patients and staff.

“And we urge everyone to continue to follow the rules around social distancing, hand washing and only leaving home if it’s essential to ensure we continue our progress against the virus.”

All visitors must cover their mouths and noses with a mask, bandana, buff/snood or scarf as soon as they enter a hospital building. Please note people cannot come into any hospital building unless they are wearing a mask, even if they have a medical exemption, to ensure the protection of our patients and staff.

All visitors should wash their hands thoroughly when they walk into a ward, use hand sanitizer when they leave their relative’s bedside and wash their hands for at least 20 seconds as they leave the ward.

Despite the new arrangements, people should not visit any part of Hull Royal Infirmary or Castle Hill Hospital, including wards, diagnostic areas, clinics or outpatient departments, if they are

• unwell, especially if they have a high temperature, a new, continuous cough or have experienced a loss of sense of smell or taste
• vulnerable as a result of their medication, a chronic illness or they are over 70 years of age

Anyone admitted to hospital with suspected or confirmed COVID-19 will not receive visitors except in exceptional circumstances.

Hospital staff caring for people with cancer have been thanked for their efforts to support patients and families throughout the pandemic.

Nursing, medical and support staff on Ward 31 at Castle Hill Hospital have continued their work to look after people undergoing treatment and living with cancer since the start of the pandemic last March.

Now, Deborah Leadley, Junior Sister on the oncology ward within the Queen’s Centre, has praised staff for supporting people dealing with serious illnesses during Covid-19.

She said: “I am so proud of the team. We work in a very difficult speciality and help patients every day who receive bad news and this, of course, impacts on everyone emotionally.

“The staff always have a smile and are ready to help everyone.”

Ward 31 has remained an oncology ward since the start of the first lockdown and throughout the pandemic as part of Hull University Teaching Hospitals NHS Trust’s commitment to protect cancer services despite the pressures caused by the pandemic.

However, staff on the ward had to adapt to new ways of working to support other wards and teams in the Queen’s Centre which were reassigned to look after people with the virus.

Ward staff worked with staff from other parts of the hospital as a multi-disciplinary team to ensure patients could go home and back to their families with appropriate support and treatment in place.

With relatives not able to come onto the ward because of the grave dangers of spreading the virus to people with already compromised immune systems, staff have been giving daily updates to families about their loved ones.

They also created a dedicated email address so relatives could contact their loved ones directly.

Deborah Leadley said: “All our staff have tried to ensure all patients are fully informed and that communication is smooth between all members of the multi-disciplinary team and this has helped with supporting the unit.

“Although Ward 31 was not a full Covid ward, our staff have had to adapt our ways of working to support the Covid ward next door.

“We’ve become more efficient with discharges through regular contact with our senior medical team to ensure the hospital had enough beds for those most in need and to help get people home and back with their loved ones as quickly as possible.”

The nation said a very fond farewell to Captain Sir Tom Moore on Saturday, who raised £32.8m for NHS Charities Together.

In tribute to Captain Sir Tom Moore, and all those who donated or fundraised themselves as part of NHS Charities Together’s COVID Appeal, Hull Hospitals official charity WISHH, shares how grants have supported NHS patients, staff and volunteers at both Hull Royal Infirmary and Castle Hill Hospital.

• The WISHH Charity has received £200,000 to date from NHS Charities Together’s COVID-19 Appeal. These grants have already and will continue to provide a range of staff welfare projects.
• Captain Sir Tom Moore became a Guinness World Record holder after raising £32.8m (£39.3m with Gift Aid) for NHS Charities Together’s Covid-19 Appeal.  The most money raised by an individual by walking 100 laps of his garden before his 100th birthday and inspiring a nation.

The funding WISHH has received has meant the Charity has been able to support the health and wellbeing of hospital staff across the Trust enhancing staffrooms with new furniture, fridges and microwaves.  Sanctuary rooms have been introduced, and boxes containing distraction and relaxation items as well as support information for ward staff.

One of the Charity’s largest legacy projects has been part funded by NHS Charities Together; a long term Health Wellbeing Facility at Castle Hill Hospital, which is due to open late spring 2021.  The facility will provide hospital staff and volunteers, both during and outside working hours, dedicated areas for staff to unwind and relax. The area will also contain space for activities such as Pilates or yoga which aid staff in their recuperation and recovery.

Hospital staff and volunteers will be able to use the space in any formal or informal way to help them cope with their experiences of Covid-19, to maintain their physical and psychological wellbeing and for general relaxation purposes.   The physical and emotional strain of working through the Covid-19 pandemic reinforced the need for this a facility.

Numerous outdoor areas have also been created enabling staff to stay safe and take socially distanced breaks.

To support patients’ and help them keep in touch with loved ones during the pandemic, additional iPads have been provided.  Wards are being brightened with artworks, and furniture for a complex disability ward to provide furniture for an assessment flat and dining room.

Funding provided has also enabled enhanced bereavement support services to be provided.

Sue Lockwood, Chair of the WISHH Charity said, “As the nation said a fond farewell to Captain Sir Tom Moore, his remarkable achievements and that of our supporting fundraisers have helped WISHH create a local legacy across Hull Hospitals.  Our community has relied heavily on NHS staff and never more so than throughout this pandemic. We have worked closely with Hull Royal Infirmary and Castle Hill Hospital to identify how WISHH could help support staff and patients with funds raised during and beyond the COVID 19 crisis.

“We are immensely grateful to Captain Sir Tom Moore, NHS Charities Together for this support and to our local fundraisers helping us to make a difference to the outstanding people who provide our care.”

Ellie Orton, Chief Executive for NHS Charities Together, said:
“Captain Sir Tom Moore was a complete inspiration to us all and his memory lives on through the incredible programmes NHS charities have been able to fund. Thanks to his efforts, funds have reached the length and breadth of the UK through every one of our 241 member charities, and they have made a huge difference on the ground, both to address the immediate needs of patients and staff and to support the longer-term recovery of the NHS. His legacy will live on through the work of the Captain Tom Foundation.”

The support of NHS charities will be crucial in the years ahead as the health service recovers from the most challenging period in its history.

NHS Charities Together is the national charity caring for the NHS. It helps provide additional support to patients, NHS staff and volunteers, working through its 241 member charities based with hospitals, ambulance trusts, community health trusts, mental health trusts and health boards across the UK.

In total NHS Charities Together’s COVID-19 Appeal raised £150 million thanks to the support from Captain Sir Tom and others. Over £118 million has already been made available to our 241 member charities to help patients, staff and volunteers on the ground.

For further information on the WISHH Charity;

• call us on 01482 622299
• email us at HelloWISHH@hey.nhs.uk
• or follow us on Facebook, Twitter and Instagram @WISHHcharity

For more information about NHS Charities Together visit www.nhscharitiestogether.co.uk

Children’s nurses in Hull are asking kind-hearted donors to swap chocolate eggs for arts and crafts this Easter in a special charity appeal.

Every year, the children’s wards at Hull Royal Infirmary would normally be inundated with offers of chocolate treats for youngsters spending time in hospital. But now Helen Lyon, junior sister on Ward 130, is among those asking kind-hearted donors to support the hospital’s WISHH Charity with a financial donation instead of Easter eggs, to enable the generosity to go further and wider.

Helen (pictured above left, with play specialist Marissa Turner) says:

“Members of our local community tend to provide Easter eggs for children in hospital every year, but as Covid-19 still poses a very real risk to our patients, we are kindly asking donors and community groups to raise money for the WISHH Charity Easter Appeal instead of delivering chocolates.

“Not only will this ensure the Covid-19 risk to our staff, patients and visitors alike is reduced, but crucially it will enable us to buy arts and craft materials, activities, toys and games for the wards which can be enjoyed by many more children over the weeks and months to come.

“We know people love to collect eggs and we’re always grateful for this, but at the same time, we hope people will also understand that safety has to be our number one priority. Donating funds to the WISHH Charity Easter Appeal is a great way of ensuring young people still benefit from the kindness of the local community, but in a way which is healthy, safe for all, and likely to benefit a greater number of children.”

‘The WISHH Charity Easter Appeal’ provides plenty of ideas for ways in which individuals and community groups can get involved and raise money to generate some Easter- themed cheer. The charity’s website plays host to a range of creative ideas for socially distanced fundraising and activities at home, enabling everyone to continue meeting government guidance around Covid safety.  Fundraising ideas include taking part in bunny hops, crafting, baking, donning Easter attire, and running Easter themed fundraisers safely in schools and workplaces.

Lisa Whitton, WISHH Charity Manager said:

“Covid-19 still continues to impact everyone’s lives.  Our top priority as Hull Hospitals’ official charity, is to keep patients safe, but at this time of year we understand that people love to be able to bring a bit of sunshine to children spending time in hospital  too.

“We are already receiving calls from members of the public and community groups, asking how they can support children this Easter. Working with the staff on our children’s wards, we know we can benefit so many more young people by using funds raised through the WISHH Easter Appeal to purchase items that will keep youngsters occupied, entertained and showing their creativity.

“We look forward to sharing our Easter ideas to inspire our community to brighten the lives of patients at Hull Hospitals.”

Funds raised will enable the hospitals to purchase ‘Covid safe gifts’ for children of all ages from babies, toddlers, primary and secondary aged young people who will be staying on our wards over the Easter holiday period. Such support will also make a difference to patients being looked after in the Children’s Emergency Department, Eye Hospital, Anlaby Suite and other specialist areas.  Any additional funds will be used to support patients across our hospitals throughout the year.

This is how your donations could help make a difference:

• £5 will provide an Easter themed activity/colouring book and pencils
• £10 will provide an older child or teenager with a toiletries gift set
• £12.50 will provide a patient with a toy such as mystery eggs or board games
• £15 will provide a teddy bear for a vulnerable child who undergoes medical examination within the hospital
• £20 will fund an Art/Crafts Bag – A take-home gift to encourage activities post discharge
• £40 will provide video games to keep patients occupied on the wards
• £100 – £500 will provide sensory items for our Eye Hospital for example bubble tubes and sensory boards
• £250+ will provide an Easter Bunny’s basket of games and gifts for children on wards
• £1,000+ will enhance playroom learning toys the wards for patients now and in future years.

Donations and fundraisers can be set up online via the dedicated Just Giving page https://www.justgiving.com/campaign/wishheaster One-off online donations can also be made this way.  Donations to the appeal can also be made by sending a cheque made payable to “WISHH Charity”, and posted to WISHH Charity – Easter Appeal, First Floor Administration Block, Castle Hill Hospital, Castle Road, Cottingham, HU16 5JQ. Writing on the back “Easter Appeal”.

Businesses which would like to support this appeal, please get in touch with Lisa Whitton on 01482 622299/07827 881766 or email HelloWISHH@hey.nhs.uk

For further information call us 01482 622299 or email us at HelloWISHH@hey.nhs.uk or follow us on all Facebook, Twitter and Instagram @WISHHcharity.

Frankie Carvalho enlists some of the biggest names in the music industry to help raise funds for Hull Hospitals

Losing a dear friend of many years to Covid-19 must be devastating. But to see your sister-in-law taken ill and your brother hospitalised due to the same disease within a matter of weeks can be nothing short of heart-breaking.

That’s what happened to Frankie Carvalho from Beckenham, south east London, who saw three of her nearest and dearest badly affected by coronavirus last year, including her good friend Vivienne who sadly lost her fight for life.

It’s fair to say Frankie, who comes from a very musical family, has been on an emotional rollercoaster. But drawing strength from her friends during the most turbulent of years, she is now spearheading a fundraising initiative for the hospital which saved the life of her younger brother.

Vivienne died with Covid-19 in April

Frankie explains:

“In April last year, I was devastated by the loss of my dear friend Vivienne to coronavirus. She was admitted to Lewisham Hospital in London, which is where she passed away. Losing her was such a shock, it was something none of us; her friends and family; expected. And of course, due to Covid restrictions, I and many others were unable to attend her funeral. I had to park nearby and watch the service whilst sitting in my car, tears rolling down my face, as it was streamed to our phones. It was just too cruel and saddening to bear; saying goodbye to a friend should never be like this.

“One month later, my sister-in-law Sam who lives in Willerby, near Hull, tested positive for Covid-19. It brought this whole pandemic even closer to home and fear struck me once again. Despite her best efforts to self-isolate at home, inevitably my brother Glen went on to catch the virus too.

“I always feared my brother getting this disease as he already had reduced lung capacity.  Glen spent almost six weeks on Ward 7, Castle Hill Hospital’s infectious diseases unit, where he was in receipt of high dependency care. He had suffered a pulmonary aneurysm as a result of Covid-19 and had blood clots in his lungs. Breathing was extremely difficult for him, his need for oxygen intensified, he lost 2 stone in weight, and just walking to the bathroom was almost impossible.

Frankie’s brother Glen also became seriously ill

“It was touch and go many times, but eventually he started to improve and he has been back at home for several months now.  Although he is not completely recovered, he is so very much better than he was. Without the impeccable care Glen received at Castle Hill Hospital, I could well be telling a different story. This is the reality, the horror.”

Over the course of her ordeal, Frankie drew strength from the many messages of support from friends and loved ones, and as a self-confessed amateur writer, she turned to poetry to help her process and express what was happening.

“During this terrible time, I started writing a poem to let all my feelings out on paper. I sat and wrote and wrote and wrote.  I poured it all out. I wanted to show my story, Glen’s story, Vivienne’s story and the trauma and hope and support we went through and received. I had to get it out.”

The poem eventually developed into a song, and Frankie enlisted the help of some big names in the music industry such as James Hawkins, who co-produced the single ‘You’ll Never Walk Alone’ with the late Captain Sir Tom Moore and Michael Ball. Later Frankie worked with Boy George’s vocal coach, Christopher David Mitchell and his partner Oliver Delbos from The Recording Artist Programme to move her emerging project forward and create something really special.

Advertisements for a singer to be able to turn Frankie’s poem, ‘Dancing & Free’ into a single, attracted over 300 applications, and the multi-talented West End performer and star of  ‘We Will Rock You’, Amy di Bartolomeo, was chosen to record the song.

(L-R) Oliver, Frankie, Chris and Amy

Frankie says: “I’m so pleased with Amy’s interpretation of my lyrics and her beautiful voice is just amazing.

“To be able to express my love for my brother Glen, Sam and Vivienne, and to share our story in this way is something I hope will be an inspiration to others.”

The haunting and powerful ‘Dancing & Free’ will be released on Apple Music/iTunes and Spotify on Friday 19 February 2021. Proceeds from the single will be donated Hull University Teaching Hospitals NHS Trust’s official charity, WISHH*, as a gesture of thanks for the care shown to Glen by Castle Hill staff during his time in hospital.

Lisa Whitton, WISHH charity manager says:

“Covid-19 has had such an impact on so many families, friends and loved ones. By Frankie channelling her own experience into creating this beautiful and powerful single, the lyrics will resonate with many who have been touched by Covid.

Frankie Carvalho

“Funds raised from Dancing & Free will enable the WISHH Charity to continue to support staff and patients across Hull Hospitals both now and beyond the pandemic. Thank you so much Frankie for telling your story and for making this single a reality to support Hull Hospitals.”

Frankie adds:

“If anyone had told me this time last year of all the downs and the resulting ups 2020 would bring me, I would never have believed them.  2020 was a bad year for so many and this is just my story, a story among hundreds of other stories.  I don’t know how I pulled myself out of the darkness because so many times I felt so hopeless and desperate.  There are so many lines in my song that speak volumes but the one line, ‘where would we be without our friends there?’ speaks volumes and is so true. I owe a debt of thanks to my friends who were there when I needed them so badly.

“It’s been quite a journey and one that I never thought I would travel. At the age of 74, I created a song and became a songwriter. From darkness into light, we survived, with a little help from friends.”

Hull University Teaching Hospitals is backing a new NHS campaign to urge families in East Yorkshire to talk about organ donation following research that less than half of adults in England have had the conversation.

The Leave Them Certain campaign aims to highlight the impact not knowing has on the families who are left behind and encourage people talk about their decision. It follows the law change last year in England, which means that all adults are seen as willing to donate their organs, unless they opt out or are in one of the excluded groups.

However, many don’t realise that families will still be approached before any donation goes ahead. Even though 80 per cent of people are willing to donate their organs, only 39 per cent say they have shared their decision. And while a huge 9 in 10 families support organ donation if they knew what their loved one wanted, this figure falls to around half when a decision is not known.

As part of the campaign, a new TV advert launched this week featuring the Kakkad family. Shivum’s father Bharat died from a cardiac arrest when he was 63 in May 2019, but the family had never spoken about organ donation. The advert features family footage and memories of Bharat but ends with another memory – when they asked Shivum if his father wanted to be an organ donor and he just didn’t know.

Significantly, Shivum and his family did agree to organ donation, but it was a decision that could have been made easier if they’d had the conversation.

Shivum said: “My father was a very giving person. He did charity work and was a strong believer in the Hindu act of Sewa, of service to god. When the specialist nurse approached us about organ donation, we made our decision. We knew that helping others in need was what my father would have wanted. But I wish we had spoken about it to know for certain and I would urge others to take the opportunity while they still can.”

Shivum hopes that by sharing their family’s story, they will encourage more families, particularly from Asian and other ethnic backgrounds, to support and talk about organ donation. The numbers of donors are increasing, but more need to come forward as often the best transplant match will come from a donor of the same ethnicity. Bharat went on to help the lives of two other people. He donated a kidney to a woman in her 50s and a kidney to a man in his 60s.

Fay Turner, Specialist Nurse in Organ Donation, Yorkshire, said: “Talking to your loved ones about your organ donation decision is hugely important. The not knowing can be an added stress for your family at what is already a very difficult time. We would like to encourage more people in East Yorkshire to think about whether they’d like to be an organ donor and to let friends or family know so that they can be sure they are making the right decision for you.”

Research shows that the biggest barrier to talking about organ donation is that it’s never come up in conversation with 34 per cent of people stating this as their reason. 27 per cent say they are worried it will upset their family or make them feel uncomfortable, 24 per cent feel they don’t need to tell anyone their decision, 22 per cent don’t want to talk about their own death, 22 per cent say they haven’t got round to it yet and 16 per cent have never thought about organ donation before.

Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation for NHS Blood and Transplant, said: “People often tell us that they struggle to find the right time or words to talk about organ donation, unfortunately we see first-hand the impact not knowing has on families when the first time they consider their loved ones wishes around organ donation is when they are seriously ill or have already died. Talk to your friends, talk to your family. Even though the law has changed, you can still sign up to the NHS Organ Donor Register to provide your family with added reassurance. Please don’t wait. Have the conversation today.”

The NHS has some produced some tips and guidance to help start the conversation:

• Start by checking in first; ‘how are you doing?’ so you can gauge whether now is a good time. Choose a time when you’re not too distracted or when you’re sharing a space, or time with each other, maybe over a cup of tea or out walking.
• Perhaps there is something that prompts the conversation – passing a driving test, seeing our campaign TV advert, or an article in the paper.
• Open with ‘did you hear’ and not your own point of view; or use a hypothetical ‘how would you feel if…’
• If faith is important to you, open with talking about what you know about your faith’s beliefs on giving.
• Acknowledge it’s a difficult subject and that you don’t have to agree.

Find out more by visiting www.organdonation.nhs.uk on  how to discuss your decision

For more information on organ donation and to register your decision, please visit: www.organdonation.nhs.uk or call 0300 123 23 23.