Message of hope as health experts prepare for event to bring our insides out

In 2019, Jenny Lake, a management consultant from Barrow-upon-Humber, was diagnosed with colitis. Already going through a very difficult time in her life, the news came as a shock. Yet ironically, the stress she was under could well have triggered the colitis flare-up which ultimately led to her diagnosis.

Jenny’s symptoms presented as many a classic case of inflammatory bowel disease (IBD) does, with severe stomach pain, fatigue and needing to go to the toilet far more often than usual.

“The cramps were painful but when I began to pass blood I realised there was something much more serious going on. Looking back, I think I could well have experienced flare-ups many years earlier, but they went undiagnosed.

“Following a colonoscopy in 2019, I was told that I had colitis. It was a relief in some ways but that time in between, while I was waiting for results, was really quite frightening; you imagine the very worst. Even when I received my diagnosis, I was still worried; what if I’m not going to be able to manage my condition? What if I’m not going to be able to lead a normal life anymore?”

Jenny was put on a time-limited course of steroid tablets to manage her symptoms along with another form of regular medication. Her symptoms thankfully went into remission, but following another period of stress in 2021 – a common trigger for many with Crohn’s or colitis – a further course of steroids proved unsuccessful.

“That was another incredibly frightening time, as now the steroids were no longer working for me, I began to worry whether anything else would work, and the stress of that made my symptoms worse,” Jenny continues.

At that point, in April 2021, Jenny was invited to take part in a clinical study but it would take a further four months before she received her first dose of the new biologic drug, during which time she would continue to experience debilitating flare-ups.

Jenny Lake was diagnosed with colitis in 2019

“It was a difficult period in my illness,” she continues. “Friends and family would be organising events and parties and I’d be worrying about whether I could go and what might happen if I did. I was worried about urgently needing the loo while I was out, so I would often not eat at all to try and reduce the chances of that happening.

“It can be quite a lonely period too. As well as the physical symptoms, there was a feeling of isolation, like no one I knew really understood it, and then because people find the symptoms associated with colitis embarrassing, no one really wanted to talk about it either.”

But there is light at the end of the tunnel. Since taking part in the VERDICT trial at Hull Royal Infirmary, Jenny has found a treatment that works for her and has not experienced a flare-up of her condition since 2021. She has found support among family members with other long-term health conditions and regularly accesses support groups to talk with other people tackling the same or similar issues.

“They call it an invisible illness because you can’t see it from the outside, but I think colitis is even more so than some other illnesses because people don’t find the symptoms easy to talk about either. But it’s so important for people to come forward for help when they need it, not suffer in silence or be too embarrassed to speak about their problems.

“Since being diagnosed and put under the care of the team in Hull, I have felt incredibly well cared for and supported, and I feel very lucky to have them looking after me.

“I’m really grateful that the NHS has now found a treatment that’s working for me, which shows that IBD can be managed well and life can still go on as normal. You learn to adapt but that’s part of living with your condition, not being defined by it.”

Anyone who would like to know more about colitis, IBD or other digestive diseases is being invited to attend the free Science of Digestion event taking place in Hull next week, on Tuesday 14 May. Organised by the Guts UK charity and Hull Hospitals, the event is free to attend and will feature some of the region’s leading experts in the field of digestive, colorectal and liver health. Organisers will also be inviting guests to meet Colin, a 5m high giant inflatable colon designed to get people talking about digestive health in an alternative and interactive way. Families are welcome, though places should be reserved in advance.

Full event details including timings, location, and a full run-down of the expert line-up can be found online: https://hull-digestion.eventbrite.co.uk

Stomach pain. Digestive difficulties. Toilet troubles. Whatever you want to call them, not many of us like to talk about them.

But when you consider that more than 5,500 people in Hull and the East Riding are living with a diagnosis of Inflammatory Bowel Disease (IBD) and around 430 people in our region alone will be diagnosed with bowel cancer this year, it’s clear that we as a community need to get to grips with guts.

IBD is very different to irritable bowel syndrome, although it does share some of the same initial symptoms such as abdominal pain and diarrhoea. IBD is, in fact, an umbrella term for Ulcerative Colitis and Crohn’s. If left untreated, IBD can lead to the need for surgery or potentially life-threatening complications.

Consultant gastroenterologist and IBD specialist, Prof Shaji Sebastian

Professor Shaji Sebastian is a consultant gastroenterologist and lead clinician for the IBD Unit at Hull Royal Infirmary, and was recently elected to the governing board of the European Crohn`s and Colitis Organisation (ECCO), Europe’s largest forum for IBD specialists. He says:

“Getting a diagnosis for IBD is so important, as the sooner we do this, the sooner we can start to explore different treatments. IBD can have an impact on every aspect of a person’s life, including a person’s mental well-being such as feelings of stress or isolation, for example, and also affecting day-to-day activities that many of us take for granted, like eating a meal out or going away on holiday.

“Not everybody with stomach pain will have IBD, but the most important thing is to seek advice and not ignore symptoms like severe stomach pain, diarrhoea, fatigue and weight loss, especially if you’re experiencing some or all of these at the same time.”

And next week, some of the region’s leading health experts will be giving you the chance to do just that when they team up with the national charity, Guts UK, to host a special ‘Science of Digestion’ event. To be held at Hull’s Guildhall on the evening of Tuesday 14 May, the event will enable the public, patients and professionals to hear from experts in gastric, colorectal and liver health. Information on digestive diseases, the importance of early diagnosis, and advice on preventative steps we can all take to reduce the risk of digestive problems will also be freely available.

“There will literally be no question too awkward or that we haven’t heard before,” says Julie Thompson, Information Manager for Guts UK.

“When it comes to gut health, as a nation we can’t afford to be embarrassed. Some 10,000 people are dying in the UK from liver disease each year, bowel cancer is the fourth most common cancer and half a million people are already living with IBD. These are not small numbers, so the likelihood is that, even if you’re not affected personally, you’ll know someone who is.

“Not only will we be sharing information with patients and professionals at our Science of Digestion event, we’ll also be providing general advice to family, friends and those who care for someone with digestive issues so they know how best to support and look out for them.”

The Science of Digestion event will take place from 5:30 – 7:30pm on Tuesday 14 May at the Guildhall, Alfred Gelder Street, Hull (doors open 5pm). Guests will hear from some of the country’s leading experts in gut health, colorectal cancer and digestive diseases and be able to put any questions forward. There will also be the opportunity to get up close with ‘Colin the Colon’, a giant inflatable walk-through experience offering you the chance to see what a healthy colon does (and doesn’t) look like.

Families are welcome and refreshments will be available. Places are free of charge but should be booked in advance via Eventbrite, where you can also find full details of the speakers and topics: https://www.eventbrite.co.uk/e/science-of-digestion-registration-807586522027

Our End of Life and Pastoral and Spiritual Care teams are encouraging people to get talking about death, dying and grief in whatever way, shape or form works for them for Dying Matters Awareness Week.

End of Life Lead Nurse, Alison Redhead

The national campaign, which runs from 6 to 12 May, aims to open up conversations around death and dying. This year’s theme focuses on the language that we use, and conversations we have, around death and dying with healthcare professionals.

Northern Lincolnshire and Goole NHS Foundation Trust (NLaG) and Hull University Teaching Hospitals NHS Trust (HUTH) are working together as NHS Humber Health Partnership (NHSHHP). Our teams across Hull, Scunthorpe and Grimsby are holding various events across the week.

Alex Wray, Matron for End of Life at HUTH, said: “When a patient is in hospital and coming towards the end of their life, the elephant in the room is sometimes having the courage to have those difficult conversations about death and dying. Whether it’s with healthcare professionals, family, friends, or colleagues, we’re encouraging everyone to have these important conversations and to think about the words we use to have them.”

Chair of the local Dying Matters group in North Lincolnshire, Alison Redhead, who also works as an End of Life Lead Nurse at NLaG, said: “Honest, timely discussions about death and dying are so important, as this can aid in ensuring the person’s dying wishes are respected and carried out to meet their individual needs at the end of their life. We hope that speaking honestly about death means people get the information and support they need, when they need it.”

The North Lincolnshire Dying Matters group – which is made up of representatives from across the hospital, as well as hospices, charities, carers support services, funeral directors, and solicitors – will be out on the following days:

• Tuesday 7 May, 10am to 2pm, Arc Community Centre, Westcliff, Scunthorpe
• Wednesday 8 May, 10.30am to 12pmn ‘Living later life well’, Trinity Church, Barton Upon Humber
• Friday 10 May, 10am to 3pm, Morrisons supermarket, Scunthorpe
• Friday 10 May, 9am to 3pm, St Johns Market, Scunthorpe
• Friday 17 May, 10am to 3pm, RDASH bus, Tesco car park, Scunthorpe
• Friday 17 May, 9am to 3pm, Freeman Street Market, Grimsby.

End of Life Matron, Alex Wray

Make sure you pop along and have a chat. It could be about how to start a conversation on how to record your wishes for your funeral, considering registering as an organ donor or speaking to your loved ones.

In Hull, the team has joined up with Dove House Hospice, Yorkshire Ambulance Service, City Health Care Partnership, and local bereavement services, who will be manning stands at Hull Royal Infirmary (HRI) on Tuesday 7 May, Wednesday 8 May and Thursday 9 May between 11am and 3pm, in the main foyer of HRI. Staff will be available for a chat, advice, and support.

Also, at HRI in the Haven, which is located on the first floor, a short, animated film will be screened throughout the week featuring honest, touching accounts from three people. Using their personal experiences, the film explores their approaches to language at the end of life. The accounts are from Patricia, who has an incurable illness, Mumtaz whose husband Rashik died from kidney cancer, and Lucy who is a palliative medicine consultant.

Local groups, teams of health care professionals and members of the public are also invited to pop along to the Haven on Wednesday 8 May between 9.15am and 4.15pm, where the National Advance Care Plan Day Conference, which is being held in Norwich, is being live streamed. You can pop in and out during the event. We will be asking how will you ‘get your house in order?’. You might decide to ‘make a pledge’ to document your wishes within an Advance Care Plan. You might simply decide to learn more about this important area and have a conversation about your wises with a loved one.

People experiencing bowel problems are being urged to beat the blushes and come forward for help this Bowel Cancer Awareness Month.

While toilet issues and tummy troubles aren’t often seen as hot topics of conversation, they can often be the first signs that someone has a problem, and as bowel cancer is one of the most common forms of cancer in the UK*, they’re signs that shouldn’t be ignored.

When the national bowel cancer screening programme originally launched back in 2006, adults aged between 60 and 74 were invited to take part. Fast forward to the present day, and the Humber and Yorkshire Coast Bowel Cancer Screening Service (HYCBSS) now invites people as young as 54 to take part, with plans to roll that back further to 52 and 50 later this year. And the signs are that this is having an impact.

Mark Hughes, Clinical Director for HYCBSS says:

“Incidence of cancer across our region tends to be higher due to health inequalities, and that includes the number of people diagnosed with bowel cancer. Since we began inviting people aged 54 to 60 for screening in 2023, we have diagnosed 52 of those with cancer or with multiple polyps that could have turned into cancer. That means the extension of the programme is not only having a positive, potentially life-saving impact on people in our region, but also on their families and loved ones too. By the end of March 2025, the aim is to extend screening further to people as young as 50.

Science of Digestion is free to attend and takes place on 14 May

“Screening invitations and home test kits are issued once every two years. The process is quick and simple, and you simply post the kit off once you’re done. While the main aim is to look for signs of bowel cancer, the test results also help us to identify polyps and other potential issues as a result of people taking part in the programme.

“People like Bowel Babe have helped massively in raising awareness of bowel cancer in recent years, and of bowel cancer in younger people, but it’s important that everyone knows what to look for and gets any changes or unusual symptoms checked out early. Bowel cancer survival rates are really good if the disease is caught and treated early, so if you’ve been experiencing issues when going to the toilet and you’re worried about asking for help, please don’t be; there’s really nothing to be embarrassed about.”

Members of the Humber and Yorkshire Coast Bowel Cancer Screening Team will be available for advice and information at the upcoming Science of Digestion event taking place next month. The event, organised by Hull Hospitals working together with the Guts UK charity, will give the public, patients and professionals the chance to learn more about a variety of digestive diseases, such as Crohn’s and Colitis, IBD, liver disease, bowel and pancreatic cancers, and be able to put their questions to the experts.

The Science of Digestion event is free to attend and will take place from 5:30pm on Tuesday 14 May at Hull’s Guildhall. More information is available via Eventbrite where you can also register for free – simply search ‘Science of Digestion Hull’ or visit https://www.eventbrite.co.uk/e/science-of-digestion-registration-807586522027

The mother of the 4,000^th baby to be born at Hull’s Midwife Led Unit (MLU) has showered praise on the team for the exceptional care she received.

Bukola Oni, 37, applauded the compassionate and personalised care given to her by staff at the Fatima Allam Birth Centre when baby Joshua was born at the end of March.

She says: “From the moment I walked into the centre, the midwives made me feel comfortable, and that made me really confident about the birth. They knew what they were doing and did it right.

“The whole process took less than two hours, and the midwives were there every minute. They made sure I got everything I needed during the period – all the assistance I needed was provided. They kept an eye on me and the baby. They were literally on their toes the entire time.

New mum Bukola with midwive Michelle and Baby Joshua

“I have had a very good experience. It is really good that we have a service like the centre provides, that delivers a top-notch healthcare service to mothers. I am doing well, and the baby is fine as well, and I have them to thank for it.”

The MLU includes three birthing rooms, Jasmine, Persea and Lotus, each of which features a unique design more akin to a boutique hotel than a hospital room. Open round-the-clock, the rooms also offer users the option of a water birth, aromatherapy, mood lighting and music to personalise their natural birth experience and make it more relaxing.

Katie Headlam, Midwifery Sister at the centre says: “I am delighted that Bukola had such a wonderful birth experience with us. Reaching 4,000 births in just under seven years is such an achievement for my team, and for a MLU in general.”

Midwife Michelle Willingham, whose last assigned delivery before she retired was baby Joshua, also shared her excitement at being part of this milestone.

She says: “I normally work on Labour Ward, so I was absolutely thrilled to be there for Bukola and baby Joshua on my last day after 43 years in the NHS, 36 years spent as a midwife.

“We had tears together afterwards as we were both so happy! It was an absolutely wonderful birth for my last day and for it to be the 4,000^th in the centre so far was amazing.”

Patients and porters at Hull Hospitals are celebrating after taking delivery of 15 specialist wheelchairs.

The new chairs, collectively costing more than £15,000, have been paid for through the hospitals’ WISHH Charity and its generous supporters.

In a change to the usual NHS blue, the chair seats are a distinct shade of lime green, a nod to the charity’s colours, and each has been emblazoned with WISHH branding on the back. The chairs feature a brake, leg rests, drip stand facility and a medical notes holder on the rear, and are a welcome addition to the Trust’s equipment stock, as Graham Taylor, Facilities Services Manager (Logistics) explains:

“With two busy hospitals under our remit, the availability of wheelchairs on site is essential to be able to move patients around quickly and safely, and ensure services continue to run smoothly.

“Across Hull Royal and Castle Hill, our Portering team carries out more than 800 patient transfer jobs each day with the majority of those requiring the use of a wheelchair. We know plenty of other visitors use our chairs independently to help loved ones with mobility difficulties get to their appointments too, so the importance of having chairs available across our sites really can’t be stressed enough.

“The new wheelchairs paid for by WISHH will go a long way to ensuring patients have wheelchair access readily available when they arrive with us, and hopefully help to make their time with us a bit more comfortable and less stressful.”

Lisa Whitton, WISHH Charity Manager says:

“The WISHH Charity is so pleased to have been able to support our hospitals with the provision of wheelchairs. The chairs are very clearly identifiable with their bold colouring and distinct design; it’s a great way for us to be able to improve patient experience and raise awareness of the hospital charity’s work at the same time.

“As both of our hospitals are so very busy, we know the chairs will be well used and much appreciated by staff and visitors to Hull Royal Infirmary and Castle Hill Hospital.

“The donation has been made possible through the generosity of local people, local businesses, and the support they have given to our WISHH fundraising activities in recent times. On behalf of WISHH and Hull Hospitals, I’d like to thank everyone who has donated and helped us deliver what will be a real enhancement to patient care and patient experience.”

Members of the public are welcome to use available wheelchairs around the sites but are asked not to take them away from either hospital. Should any chair be found, please report this to the Portering Helpdesk on 01482 674021 to arrange collection.

Help us shine a light on your Healthcare Heroes! We need your nominations for a special award to celebrate the amazing efforts of local NHS staff.

Northern Lincolnshire and Goole NHS Foundation Trust and Hull University Teaching Hospitals NHS Trust are working together as NHS Humber Health Partnership (NHSHHP).

Our staff work across Hull, Scunthorpe, Grimsby, Castle Hill and Goole hospitals, and out in the community.

This year, for the first time, the two Trusts will be holding a joint staff awards ceremony, Golden Stars 2024.

As part of those celebrations, we’re seeking nominations for the Healthcare Heroes Award. If you’ve recently been a patient at one of our five hospitals or under our community services, and want to highlight a staff member or team that made a difference to your experience, we want to hear from you!

Whether it’s a compassionate individual or a whole team of dedicated professionals you’d like thank, put them forward for this award as a mark of recognition.

Chairman for NHS HHP, Sean Lyons, said: “Our brand new awards scheme, Golden Stars, will shine a light on the outstanding efforts and achievements of local NHS staff.

“Our 17,000+ staff regularly go above and beyond to provide the best possible care for our patients. So if someone went the extra mile to support you and you’ve had a good experience from a member of our team, what better way to say thank you than nominating them for this prestigious award.

Jonathan Lofthouse, Group Chief Executive, added: “Our joint celebrations will see fifteen awards presented on the evening, but arguably the most coveted trophy will be for the award chosen by patients and the public, so please get in touch and tell us about how your healthcare heroes made a real difference to your experience.”

The winner of the Healthcare Heroes award will be revealed, alongside 14 other awards, at the Golden Stars 2024 ceremony on Friday 13 September at the Hilton Hotel in Hull.

If you have been a patient or visitor at one of our hospitals or in our community health services, you can nominate a staff member, clinical or non-clinical, by visiting the awards website at: https://www.hull.nhs.uk/awards/

Nominations will be accepted up until midnight on Tuesday 30 April.

A spokesperson for NHS Humber Health Partnership, said:

“We have been working closely with Humberside Police to ensure that family members of all those affected have been contacted; there is no need to call the hospital or the police.

“The wellbeing of these families is our absolute priority and we will ensure that we continue to support them throughout this process.

“As this is an ongoing legal case we cannot make any further comment at this time.”