IBD nursing provision improved but most hospitals failing to meet revised UK IBD Standards

Although the number of adult services with some IBD nursing provision has increased from 56% to 78%, more than three quarters of services (79%) still fail to meet the levels set out in the IBD Standards, leading to services being suspended in the nurse’s absence.

There have been significant improvements in the quality of care for people with Crohn’s Disease and  Ulcerative Colitis since the UK IBD Standards were first issued four years ago, but IBD nurses,
gastroenterologists, GPs, surgeons, pharmacists, dietitians and patient organisations state that there is plenty of scope for improvement. To address these shortcomings and the major changes taking place in the NHS, revised UK IBD Standards have been launched this week.

Standards of care have risen significantly for children and adults since the UK IBD Audit’s examination of IBD services and care in 2006, which identified unacceptable variation in the quality of IBD care. The most recent Audit round in 2010 benchmarked hospital adherence to the IBD Standards for the first time, and found that the provision of dedicated gastrointestinal wards rose from 67% in 2006 (before the Standards were developed) to 90% in 2010.

The level of IBD Nurse Specialist provision has risen over the same period from 56% to 78%. IBD Nurses produce a considerable amount of activity and influence over a patient pathway (estimated 29,000 patient episodes per year by IBD Nurses). The role is highly complex, from providing rapid specialist advice to patients experiencing flare up, to complex drug management and monitoring. A sub-analysis of previous IBD audit rounds has demonstrated that IBD nursing can reduce hospital admissions by 8% due to the rescue work and vigilance, which are essential components of patient monitoring and safety.

Mark Sephton and Victoria Garrick, both IBD Nurses who are members of the IBD Standards Group 

on behalf of the Royal College of Nursing Gastrointestinal Forum, said, "We are pleased to see the 

progress that has been made in the quality and provision of IBD services and care since the IBD 

Standards were first developed. IBD patients are now twice as likely to see an IBD specialist nurse on 

admission and to receive the vital support that they need. However, it is clear that we still have a 

long way to go in ensuring that services have adequate provision for all their IBD patients. The RCN 

fully supports the revised IBD Standards, launched today, which will help commissioners, patients, 

hospitals and surgeries to ensure high quality services are delivered across the country.” 

What does your IBD Nurse mean to you? Do you have access to one where you are?

Read more about the IBD Standards at www.IBDStandards.co.uk

Guest Writer Lindsay Talks About the Importance of IBD Nurses

With any chronic medical condition comes a certain amount of fear. Especially when it comes to medical

problems which are prone to peaks and troughs. For a lot of people, that’s exactly what IBD is. You have weeks, months, maybe even years of nothing, and then – BAM. It hits you, and you’re back on the toilet. All. The. Time.

The fear comes from not knowing when that ‘bam’ is going to come along.

I’ve been ‘in remission’, in the words of my very kind and talented consultant, for a good couple of years now. My ‘bowel movements’ (17-year-old me is thinking, ‘kill me now,’) are fairly regular and under control, there’s no bleeding to write home about, I’m only ever in pain if I eat red or processed meat or a lot of pastry (Gregg’s is my nemesis) – overall, I’m doing pretty well.

But even though I’ve been given the r-word, the IBD team at the hospital are happy with me and my blood results are always normal, apart from slightly low iron levels, I live my life just waiting on something going wrong.

Take the last few weeks for example. I’ve lost a lot of weight. As soon as this happens, the warning bells start going off.

“I’m dying, aren’t I?” I mumbled to myself as I stepped off the scales. I’d lost half a stone in a fairly short space of time. In my head, it was Crohn’s. It was over. I could see the steroid prescription in my mind already.

Add onto this the slight twinge of pain I had on my lower right side, round about where my surgery scar marks six-and-a-half years since a small bowel resection. Warning sign number two.

Then there was the leg lumps. Another weird and wonderful Crohn’s symptom which I seem to get. ‘Erythema nodosum’ is the clinical name for this one, meaning red nodules. Basically, when there’s activity in the bowel, it causes these lumps to form on your legs. I don’t get understand either. I learned a long time ago to just accept whatever Crohn’s had to throw at me, because if I started questioning it, I’d go insane. In the last couple of months, I’ve had two delightful red lumps appear on my left leg, hard and hot and angry, causing my ankle to swell up. A great look in the summer months. Especially when coupled with a facial expression which reads: “Oh my God. I’m having a FLARE UP.”

So there I was, convinced that this was the end. I completely disregarded the fact that the weight loss could be due the fact that I’ve been incredibly busy at work and forgetting to eat regularly. (Rule number one – never forget to eat if you can eat.) The pain could’ve been explained by dinner out with a friend, a combination of indigestion and my stomach being delighted that I was actually feeding it something more substantial than a shop-bought salad and half a packet of crisps. And, I’ll admit it; I was a touch on the stressed side, (rule number two – never go for a job in journalism if you want to avoid stress), which can sometimes make the old leg problems flare up, according to my mate Dr Google.

But I ignored all of this logical thinking, and I called my brilliant IBD nurse. I’d just had my bloods done, so was calling for results (which were surely going to scream, “YOU ARE HAVING A MASSIVE FLARE UP LINDSAY!”), but I was ready to start wailing down the phone at her about all my symptoms and tell her that I’m doomed, DOOMED, and possibly start whimpering about not wanting another colonoscopy before she had time to even say hello. But her familiar, reassuring voice made me ask about the results first. And she told me, no, everything’s fine – just your folic acid that’s low, but we’ll get you on a supplement for that.

So I’m relatively healthy. Despite my best efforts in my head, I’m pretty normal (first time for everything). And hearing that, medically, there was no reason why all of this should be Crohn’s-related, I rationalised it all. But I have been reminded of a few things.

Know your own body. It’s really important to be aware of any changes, whether it’s a bit more bloating than usual, going to the toilet more or less frequently than you would do normally or weird stuff like your legs doing insane things or a twinge of pain in your belly.

Look after yourself. This is one I’m rubbish at. Eat as well as you can. Stick to what you can eat. Take the supplements and vitamins if you need them. Get plenty of sleep (I never do). Don’t let stresses get on top of you. And, basically, don’t give your body any excuses to have a meltdown. I’m thinking of taking up yoga. I have this vision of myself being some sort of Zen queen who floats around in cheesecloth dresses with my hair flowing free like Blake Lively’s, ensuring I stay in remission forever and ever. It’s never going to happen, but a girl can dream.

And lastly, IBD specialists are the best. If I had had a problem, a real problem, my local IBD nurse would’ve been able to help. In the last year, she’s dealt with wobbly voiced phoned calls from me twice, when in the throes of Crohn’s induced panic. “I’m bleeding!” I wailed. “I can’t have a flare up! I have a magazine going to print!”

On both occasions, cool as a cucumber, she told me that she was pretty sure it would be nothing because a) she knows me and she knows I’m bordering on hysterical at the best of times and b) she’d seen my blood work lately and it was all fine, but she booked me in for a scope within days and had me hand in some samples. She also managed to arrange it around work, which was good of her.

Not everyone has access to IBD nurses. Crohn’s and Colitis UK’s most recent survey found that one in five people don’t. This is, quite frankly, outrageous. These specialists are so, so important to people with IBD. Whether it’s for medical treatment, reassurance or just something to answer ridiculous questions, they’re amazing. Anne-Marie, who I go to see every eight months now, is genuinely lovely, very down-to-earth, so reassuring and won’t let me panic, even if I really want to. I’m really lucky to have access to her. And, to be honest, it’s made me reluctant to move out of this area, because I know that there’s no guarantee that I’d have this great clinic system elsewhere.

So keep calm, IBD sufferers. After all, there’s that old rumour that stress and worry makes this thing worse. If you have got access to an IBD nurse, make use of them. They’re there to make sure you’re OK. And if you don’t have one? Get involved with Crohn’s and Colitis UK to see how we can get the ball rolling to make sure everyone has access to this vital resource.

IBD and the NHS

Talking to your doctor or nurse

Having IBD means that you are likely to see your GP and consultant more frequently than other people and so your relationship with them may be somewhat different. You may perhaps find your doctor saying things you’ve not heard before, like: “We’ll try this, but I don’t know if it will work.” Some patients find this honesty refreshing; others feel rather unnerved by it, or even angry. They think: why don’t the doctors know? If this is a very different approach from your previous experience it may take time to get used to it. Talk to your doctor about it if you continue to feel worried or unsure.

They're here to help, so don't hold back!

You may also be asked to take more responsibility with your medication. For example, your doctor may encourage you to experiment a little, to see what suits you. So it’s worth asking the doctor or nurse exactly what limits you can go up to, what you can take with what and so on. Our booklet Drugs used in IBD and our more specific Drug Treatment leaflets give more information about the different medications that are available for your illness.

Before you see the doctor, think of the important questions you want to ask and make a note of them. Make sure you include any changes in your symptoms or in how you are feeling. It’s amazing what you can forget when you’re actually in the surgery. 

Finding the right words

Some people with IBD feel embarrassed talking about their symptoms even to their doctor, but remember that doctors and nurses are used to discussing all bodily functions. Here are some words you might find helpful to use when talking to the doctor or nurse: ‘Motion’, ‘stool’ or ‘bowel movement’ are quite clear and straightforward. 

But they will be used to every other word in the book, so use what you feel comfortable with. If they ask you to describe your stools, you could describe them as ‘like toothpaste’, ‘like a cowpat’, ‘like sheep’s droppings’. Other words and phrases you might find useful are: ‘urgency’, ‘having an accident’, ‘fear of not getting to the loo in time’, ‘explosive diarrhoea’, ‘gas’, ‘flatulence’ or ‘wind’. These are just suggestions – if you think out your own descriptions in advance it can save possible embarrassment in the surgery.

There's no right or wrong. Getting your point across is the main thing here. Don't hold back!