Patients waiting for life-saving transplants are dying because two-thirds of people in Hull have not told their families they want to donate their organs in the event of their deaths.

The organ donation team based at Hull Royal Infirmary and Castle Hill Hospital said time runs out for some patients because people forget to share their wishes to donate organs with their loved ones.

Today, at the start of Organ Donation Week, Specialist Nurse Alex Wray says only one third of the people in Hull who have signed the register have told their families.

She said: “Telling your family what you want to happen in the event of your death can protect them from having to try and guess what you would have wanted to do at the worst time of their lives.

“Talking about this now as a family will not only spare them additional grief, it will also mean something good can come out of your death and another family will be spared the heart-breaking loss of a loved one.”

Hull University Teaching Hospitals NHS Trust is celebrating its most successful year, with 60 transplants carried out after 33 families agreed their loved one’s organs could be used to save a life.

Trust staff also referred more patients to the organ donation team than other hospitals in the country, achieving a referral rate of 95 per cent compared to a national rate of 90 per cent.

In the last year, 1,574 people around the country donated their organs after their deaths and a further 1,051 became living donors. Together, they helped to save or transform the lives of 5,090 people.

However, 6,000 people are still waiting for an organ donation and three of those will die every day because there just aren’t enough donors.

Each person who agrees to donate their organs has the potential to save the lives of nine people.

Alex Wray said only a small percentage of the 25m people who have signed the register will actually die in circumstances which would make them suitable for organ donation.

However, hospitals still need the consent of your family even if you’d agreed to organ donation and have signed the register.

She said: “Many don’t realise we have to have permission from your family, even if this is something you have said you wanted. So, it is essential that you talk to your family so they are aware of your wishes and can act on your behalf when you can no longer express your own wishes and intentions.

“Don’t leave your family guessing what you want to happen. Spare them the agony of having to decide by having that conversation now.”

Sick babies, children and young people are set to benefit from the refurbishment of the paediatric department at Hull Royal Infirmary.

Hull University Teaching Hospitals NHS Trust, supported by the WISHH charity, has begun the first phase of a project to revamp the two wards on the 13^th floor of the tower block caring for children and young people, including some with cancer or mental health problems.

Junior sister Helen Lyon came up with the idea of decorating cubicles, corridors, bays and the playroom at the end of Ward 130 in sea themes to embrace the city’s fishing heritage and reflect the success of The Deep.

She said: “Some of the children who come to us stay with us for two weeks at a time and they and their families deserve a nice, friendly and welcoming environment.

“We’re seeing more children of 13 and 14 now with mental health problems so we need a calm environment for them where they can feel safe.

“We can’t paint artwork on our walls because of infection control so we’re having wipe-clean transfers attached instead.”

The department has received some funding as part of the trust’s newly developed Arts Strategy to paint over the current red woodwork in more calming blue and pastel colours and decorate cubicles with artwork including dolphins and penguin transfers. Those used by older children will also have sunflowers and trees.

Cubicles used to look after children with cancer and long-term conditions will also be fitted with entertainment systems featuring TVs, DVDs and games consoles after the ward received funding from children’s charity Candle-lighters.

The playroom is also being decorated and the clinical room where children undergo procedures is also going to be refurbished over the coming months.

Helen Lyon said: “We appreciate there isn’t a lot of money in the NHS so we’re doing what we can with the funds we have available.

“We’re holding fundraising events to collect as much as we can to put towards the work and we’re hoping businesses in the city will support us.”

Hull Women and Children’s Hospital looks set to become the first in the world to use virtual reality (VR) to give parents-to-be an immersive experience of labour and birth.

Pregnant women and their partners are road-testing VR headsets to “enter” the Fatima Allam Birth Centre where a woman is using one of the birthing pools in labour, supported by the baby’s father.

Women can also “enter” the operating theatre where a mother is undergoing a caesarean section so they can see what happens and learn the roles of people there.

Prospective parents have been road-testing the VR headsets at the HEY Baby Carousel events, with the next one taking place tonight (Wednesday, August 29) between 6pm and 8pm.

Janet Cairns, Head of Midwifery at Hull University Teaching Hospitals NHS Trust, said: “The headsets mean people feel like they are in the room, seeing the facilities all around them and watching how midwives interact with mothers and partners during labour.

“We already offer a video tour of the hospital so people can familiarise themselves with their surroundings before they come in.

“However, we want to give prospective parents as much information in as many different formats as we can so they can make choices that are right for them and their babies.”

The midwifery team worked with the Hull Institute of Learning and Simulation (HILS) team, based in the Clinical Skills building at Hull Royal Infirmary, to record 360-degree footage for the VR headsets.

The teams are also looking at how VR can be used in staff training and to provide other virtual experiences for women and their partners.

HILS Senior Technician Chris Gay said the team scoured the market to purchase three Oculus VR headsets which offered an affordable set-up suiting the trust’s needs and ambitions, costing around £800 for the equipment and software.

He said: “We have to use technology to offer something different to what people can already get. The video showing people the hospital is already there so we wanted to use VR so people could “feel” what it was like to be in the birth centre, on the labour ward or in the operating theatre.”

Although VR has been used to help  parents relive the birth of their own children or “be” there when they were unable to attend in the flesh, the Hull headsets are thought to be the first practical application of virtual reality in a maternity patient setting.

Parents-to-be have been testing out the headsets at the HEY Baby Carousel events, held on the last Wednesday of every month at Hull Women and Children’s Hospital to provide them with all the information they’ll need about pregnancy, birth and those first few weeks with their babies.

The HILS team has been evaluating the feedback from 130 people, with 94 per cent saying the experience overall helped them feel better prepared for the birth of their babies.

Young people from Hull aged 15 to 17 have been rolling up their sleeves at an East Yorkshire hospital to help improve the surroundings for patients, staff and visitors alike.

Forty five teenagers taking part in the National Citizen Service (NCS) with Hymers College have redeveloped previously unused green space at Castle Hill Hospital and tidied other areas in need of attention.

The group has spent a week clearing an area near to ‘The Folly’ of weeds and debris to transform it into a beautiful wildlife garden retreat. They will also be sprucing up a special garden near to ward 9 designed for the enjoyment of patients with dementia and their relatives, giving it a welcome injection of colour, and developing a courtyard area facing on to wards 10 and 11.

Their community work is part of a three-week National Citizen Service (NCS) programme, which sees young people taking part in outdoor activities, developing skills such as budgeting and cooking, visiting the fire service, and undertaking fundraising and projects to help their local community.

This summer, through the EFL Trust, thousands of teenagers from Yorkshire and Humber have taken part in the NCS, making a positive difference in their local community.

The NCS programme is delivered locally by Hymers College through the English Football League Trust (EFL Trust), providing teenagers with the opportunity to experience new things, meet new people, learn new skills and give back to their community.

Alan Parry, Estates Officer for Hull University Teaching Hospitals NHS Trust says:

“The support and the enthusiasm of all the young people to help us create and maintain a pleasant, calming environment for patients and visitors has been incredible. In recent weeks, they have already helped to transform previously disused parts of the Castle Hill site with new plants and design ideas, and well as tidying up others which were in need of a bit of TLC. It’s great to see them giving their time to their local community in this way.

“No one really wants to be in hospital, but for those patients who do find themselves here, a nice view from the window or the opportunity to go outside and enjoy the fresh air in nice green surroundings can make a world of difference to their well-being and their recovery.”

Kris Walmsley, NCS Manager and Tom Geary, NCS Officer with Hymers College, have been coordinating the students across all seven participating schools. Tom says:

“NCS at Hymers has gone from delivering to 90 participants to 209 in the space of a year. With the increase in numbers, we needed new relationships with local charities and trusts in order to provide opportunities for the young people to really make a difference in their community.

“Thanks to Alan and all the Castle Hill team, we have seen more than 70 young people come in over the summer and transform areas for everyone who is involved in the hospital environment. The staff here have been wonderful and made the participants feel at ease which has led to some fantastic projects thus far.

“As part of their Social Action Project, the groups have also carried out fundraising activities, with all the groups raising over £2000 to go towards the gardens. Any leftover donations will be given to the wards. We hope to continue such a great partnership with future groups and we can’t thank the participants or Castle Hill staff enough for helping them achieve their projects which are very personal to a lot of us involved.”

A woman has thanked two nurses for helping her husband send her a wedding anniversary card hours before he died.

Mark Murrell, 51, was rushed into the respiratory high dependency unit on Ward 5 at Hull Royal Infirmary in the final stages of idiopathic pulmonary fibrosis (IPF), an incurable, progressive condition which leads to a decline in lung function.

He told staff nurses Sam Quiney and Hannah North  he was about to celebrate his 29th wedding anniversary that weekend but had been too ill to buy his wife Wendy a card.

Sam and Hannah bought him a card and posted it to Wendy, arriving just hours after his death and the day before their anniversary.

Now, Wendy has nominated the two nurses for a Moments of Magic award run by Hull University Teaching Hospitals NHS Trust to recognise individual members of staff for going beyond their normal duties to help colleagues or patients.

Wendy said: “They were absolutely amazing. You couldn’t have asked for two more amazing caring compassionate nurses who gave 100 per cent to their patients.

“He’d been so poorly that neither of us had been able to get a card. Mark told them he hadn’t been able to get me an anniversary card and they got it for him. What they did for us just touched my heart.

“He died the next day and I received the card the day before our anniversary. It gave me so much comfort knowing he still thought of me right to the end. But that was just Mark.”

Mark suffered a heart attack when he was just 34 and underwent a heart bypass when he was 37.

After he was diagnosed with IPF in 2016, the couple, who had three children and nine grandchildren, were able to spend the following year making memories before Mark’s health declined and he was admitted to hospital.

Sam Quiney, who is a Band 5 staff nurse on Ward 5, and Hannah North, who had been seconded to the ward from the Intensive Care Unit for three months, were on night shift when Mark was rushed onto the ward, with Wendy by his side.

Sam said: “The gentleman was very poorly when he was admitted and was deteriorating quite rapidly.

“They were such a lovely couple and we could see how much they loved each other.

“Throughout the night, they were telling us about themselves and when we were alone with the patient, he told us it was his wedding anniversary but he hadn’t been able to buy his wife a card. The way he spoke about his wife was just so lovely.

“Hannah asked if we could get him a card for him and he was really pleased and asked if it would be too much trouble. We told him it wouldn’t and got it for him after our shifts and posted it to his wife.

“We didn’t know she had received it after he passed away until she contacted the trust and we were so touched by what she said.”

Hannah said: “It was important to us to make Mark as comfortable as possible, along with providing the support for his wife Wendy.

“Sam and I spent time chatting to them both throughout the night. You could see how much it meant to Mark when asking him if he wanted us to get him an anniversary card.

“It’s lovely to hear how much receiving this card meant to Wendy.”

In a message to the nurses, Wendy said: “Keep giving the great care you do. I will always remember you both as angels for looking after my husband the way you did.”

He is a familiar friendly face always there to greet you with a smile, a cup of tea and, if you’re lucky, a biscuit.

For the past 10 years, Harry Allon gives up his time to volunteer at the Queen’s Centre in the oncology day unit and outpatients department.

“It might sound stupid but, especially now I’m on my own, when I go to the Queen’s Centre and I see the same faces you get to know over a period of time, it’s like going back to a family,” he said.

Mr Allon, who worked for insurance company Pearl Assurance as a manager before he retired, joined the 700-strong army of volunteers for Hull University Teaching Hospitals NHS Trust in 2008 after a friend suggested he became a hospital visitor.

His first role was to “meet and greet” patients and visitors arriving at the centre but now goes round with his tea trolley, usually on a Friday. But if he’s free and his services are required, Mr Allon will always respond to requests from staff to help out.

“After all this time, the majority of the nurses know me,” he said. “But I don’t get carried away with it even though they tell me all sorts of stuff. I do like to converse with people, after all.”

He’d been volunteering for some time when his wife Cathleen Patricia, known as Pat, was told she had a carcinoid tumour but it was unlikely to trouble her for years.

“I’ve always been an optimist and I always used to think we would get over this,” he said. “But when we went for another discussion with a specialist, we discovered she had oesophageal cancer, unrelated entirely to the tumour.

“I remember walking away from that meeting and Pat saying to me ‘You do realise that’s it. That I’m not going to make it.’ But I insisted she would make it and that she hadn’t to give up.

“It was a very sad time but, having said that, all the time right up to the end I believed we would make it. But we never did.”

After Mrs Allon died in 2012, Mr Allon continued volunteering even though it meant returning to the place where his wife had died.

“I know precisely what room she died in, what ward it was in and it does give me a little despondent feeling when I walk past,” he said.

“But then I walk in the day unit and everyone is so cheerful because the staff are such wonderful people.

“I’ve made friends with some of them and one male nurse and his wife even invited me to join them for a pub crawl. And I did it too.”

Although he’s 86, Mr Allon shows no signs of slowing down and has every intention of continuing to volunteer at the Queen’s Centre, helping to bring some light and happiness into the lives of staff, visitors and patients.

“I do enjoy it,” he said. “I had a lesson I’ve never forgotten on my very first day.

“I was pushing a patient in a wheelchair to reception and a nurse came up to say hello. She dropped to her knees so she could speak to the patient face-to-face instead of talking down to her.

“I just thought that was wonderful.”

Dad of two Gareth Rounding is first to say he’s a bit of a cynic. But ask him how he feels about the Queen’s Centre and the staff who looked after him and he cannot praise them enough.

Diagnosed with leukaemia in 2011, Mr Rounding, managing director at steel components manufacturer BW Industries in Carnaby, Bridlington, was admitted to the centre and it was to become his second home for the next year.

Even today, Mr Rounding, married to Debbie and father to Francesca and Joshua, still attends the outpatients clinic for regular check-ups as part of his aftercare to ensure he remains in good health.

Mr Rounding, 49, said: “I could not have wished for better treatment or care from everyone at the centre.

“From the consultants, doctors, nurses, cleaners, volunteers, clergy and even the maintenance team,  they all played their part be it medically related or just in the care and true affection the people had to see me and others recover.

“The aftercare is brilliant and is a credit to the wonderful people that offer so much while working under such difficult and traumatic circumstances. I tip my hat to each and every person involved in the process of making you feel like that you are the only one they are caring for.

“If you are in the unfortunate position of requiring treatment for cancer then you will be fortunate to receive your treatment at the Queen’s Centre.”

He was the haematology doctor on call when the mammoth tasking of shifting oncology and haematology services – and patients – across Hull from Princess Royal Hospital and Hull Royal Infirmary to the brand-new Queen’s Centre.

Then a Research Registrar in haematology, Dr James Bailey has clear memories of the logistical nightmare of Moving Day, when the new centre offering the best cancer treatment in Europe accepted its first patients.

Dr Bailey said: “I was on call the weekend we moved and I remember the first patient, unfortunately, went into Bed 13 on Ward 33. All was fine, she recovered well and is still doing well today.”

First joining the trust as a Registrar in 2003, Dr Bailey stayed for a year before going to work elsewhere before returning as a Research Registrar in 2007, just in time for the shift to the Queen’s Centre.

He became a consultant in haematology in 2010 and is now Clinical Director at the centre, where chemotherapy services still keep pace with the best treatment in Europe.

Dr Bailey said: “In the 10 years of the building being open, I’ve gone from being a research registrar to consultant to now clinical director for the centre.

“It’s a lovely building to work in, with a view from every window. It’s a really nice bright and open space and that makes a big difference both to staff and patients.

“It’s a really friendly, welcoming place where everyone gets on well. We strive to do the best for patients every day and work hard on delivering the best care we can, be that on-going treatment, palliative treatment or end-of-life care.”

He sees patients at the hardest times in their lives, not long after they’ve discovered they have cancer.

But Therapy Radiographer Rob Brown also witnesses to their hope for the future experienced by those same patients at the end of their treatment.

Based at the Queen’s Centre, the radiotherapy team see up to 200 patients a day with five of the six special linear accelerator (Linac) machines built into the slopes of the surrounding countryside in constant operation.

Rob has been at the trust for 12 years after completing two years of training and was one of the hundreds of staff who transferred from Princess Royal to the Castle Hill site when the new centre opened this week 10 years ago.

He said: “We were blown away by the centre when we first got here. There was all this light and airiness and it felt such a welcoming place. It’s a cracking building and we’re lucky to have it.”

Rob Brown explains his work to Chief Executive Chris Long, left, and Chairman Terry Moran, right

Rob and the team see patients soon after they’ve been diagnosed with cancer. Although each session lasts 10 to 15 minutes, they are able to build up friendships and rapport with some patients who have to come for up to two months until their treatment is finished.

Patients diagnosed with cancer can undergo different forms of treatment, from chemotherapy and surgery to radiotherapy. Some come to the radiotherapy team for one palliative session, others can have up to 37.

First, they have a CT scan to pinpoint the exact location of the tumour. A doctor and the planning team will then draw up a treatment plan, based on the position and shape of the tumour, to ensure the exact site is targeted without damaging surrounding healthy tissue where possible.

Rob and the therapy radiographers then put the plan into action within a couple of weeks, delivering radiation to the exact location and in the exact dose specified by the doctor.

“For a lot of patients, the first day is hard because there is the fear of the unknown,” says Rob. “Still, a lot isn’t known about radiotherapy so people turn up, not knowing what to expect.

“For the treatment itself, patients don’t feel a thing but they can experience side-effects either short or long-term. If that does happen, we can give advice and have an in-house nursing team and registrars who can help them.”

Although the team sees patients at the start of their journeys and don’t always hear about the outcomes, their focus remains on making it the very best experience it can be.

Rob says: “It can be quite sad and we see some people who are distressed when they first come here but we do our best to put them at ease.

“But we also see them on their last day and we’ve got our fingers crossed for them and hope for the best.”

As a way of marking the end of treatment, staff have installed a bell which patients can ring after their last treatment to cheers and applause from the team.

Rob said: “It is very humbling when you see patients with cancer and it puts any problems you might think you have into perspective.”

She was one of the last four nurses to walk out of Princess Royal Hospital in 2008 after spending almost a quarter of a century caring for patients there.

Clare Norris felt mixed emotions as she travelled across Hull to the new £67.2m Queen’s Centre for Oncology and Haematology at Castle Hill Hospital in Cottingham.

Ten years on from that day, Clare will take a few minutes out of her busy day to think of the thousands of patients who have walked into the centre.

“I can’t believe it’s been 10 years,” said Clare. “I’ve worked in oncology since 1990 and working with such a supportive team makes a huge difference.

“But it’s the patients themselves. We look after patients who go through really aggressive, life-changing treatments. Despite that, they usually remain very positive about what they are going through.

“They are a very special group of people and it is very humbling to be a part of their journey.”

Clare qualified in 1984 and worked night shifts at Princess Royal, gaining experience very quickly as possible in different specialities including gynaecology, urology, renal and oncology.

However, she enjoyed working with oncology patients the most and has been with them for 28 years.

Since the move to the Queen’s Centre, Clare has been ward sister on Ward 32, heading the team which looks after haematology and oncology patients, and is currently on secondment as matron.

With her vast experience in the speciality, she tells student and newly qualified nurses they have to adjust their expectations when dealing with such poorly patients.

“Because we work with inpatients, we don’t tend to see the people who come as outpatients for the all-clear or their yearly reviews,” she said.

“We see them when they are so unwell, at their lowest points and it can be hard, especially when they require end of life care.

“I always say to student nurses that you have to change the goalposts. Sometimes, we can’t make people better.

“But what we can do is help them achieve what they want, to achieve a pain-free death with dignity, to die in the place of their choosing whether that’s at home, in a hospice or in hospital and to have the people they want around them in their last few hours or days.”

While the patients remain the focus, the nursing team also extend their care to relatives.

“We have to support relatives through this difficult time in any way we can,” says Clare. “We have to make it as special for them as we can and make sensitive memories of their last days with their loved ones.

“We see people who come in as inpatients and have their treatment, able to go off and enjoy the rest of their lives. But we also see people who aren’t going to get better and we need to look after them and their families.”

On the 10^th anniversary of the day patients first started arriving at Queen’s Centre, Clare will take a moment or two to remember the faces of the people she has cared for over the past decade.

“It’s hard work, like anywhere else in the NHS,” she said. “We face constant pressures and everything that goes along with that.

“However, it’s the patient/family feedback  – the cards, chocolates and, most of all, the thanks and acknowledgement people give us – that makes what we do so rewarding.”