Specialist IBD nurses are key to ensuring cutting edge biological therapies are used in a way which benefits both trust and patient, as Claire Read explains
Review the drugs on which the NHS now spends most and a theme quickly emerges. Of the top 10 highest spend medicines, nine are biologics: those molecularly complex “blockbuster” drugs which are made from living cells and which target the mechanism of a disease.
This is the sort of precision medicine which has most commonly been associated with cancer. It may come as a surprise, then, to learn that the drug on which the NHS is now spending most is not in fact used for treatment of that disease.
Adalimumab – on which £416m was spent last year alone – is actually used to treat inflammatory bowel disease (IBD), along with arthritis. So too is infliximab, which occupies slot number five. Together, they contribute to the health service spending 15 per cent of its budget on medications and treatments – some 30 per cent higher than five years ago.
For people with IBD, biologics can be nothing short of life changing, relieving symptoms which have previously proved resistant to treatment. But it is clear the drugs do not come cheaply.
There is really complex screening to make sure a patient is safe to have the treatment, then making the case with funders to get the money for the drug, then counselling the patient and organising the actual administration
The issue goes beyond the price tag. Before they can be administered – by injection in the case of adalimumab; by infusion for infliximab – a large amount of preparatory work is needed.
Explains Isobel Mason, nurse consultant at Royal Free London Foundation Trust and IBD nursing development manager at Crohn’s and Colitis UK: “There is really complex screening to make sure a patient is safe to have the treatment, then making the case with funders to get the money for the drug, then counselling the patient and organising the actual administration.”
The work doesn’t stop once treatment begins. Regular and careful monitoring is required, explains Charlie Murray, consultant gastroenterologist and clinical director for gastroenterology, Royal Free London FT. It is work he says would be impossible without his IBD specialist nursing colleagues.
“They help to a huge degree with the clinical governance around what are very complex treatments and follow ups.
“A lot of our treatments in IBD will be immuno-modulatory, so they will affect the immune system. They can affect blood tests, they can affect other bodily systems, and so that requires follow up and watching – making sure blood tests are done at the appropriate times, and making sure there’s timely follow up and review of patients to make sure they’re on the right medications, not on medications for too long, and that we get all the funding streams in place for high cost therapies.”
The gastroenterologist’s view
“The difference between having an IBD nurse or not is effectively a complete change in practice. I often joke that all of the really hard work within the IBD service is done by the nurses – they’re the ones organising the medications, they’re the ones supplying that deep background information to patients [to help them understand and cope with their condition]. Without them, you could manage a chronic condition like IBD badly, but to manage it well is impossible.”
Charlie Murray, consultant gastroenterologist and clinical director for gastroenterology, Royal Free London FT
Getting it right
Getting it right means high cost drugs are used in a way which ensures best value for money. “When the pathways are in place and they work well, the cost of drugs is dramatically reduced by specialist nurses,” says Ms Mason.
IBD nurses were important in providing information to patients, both over the telephone and within clinic visits, and also speaking to staff at the day unit where the infliximab infusions are administered
“There’s no loss of money because we’re paying for patients who shouldn’t be on the drugs any more just because nobody’s reviewed them, or because a breakdown in communication means a funder is no longer paying for a treatment. Day in, day out, advanced nurses are making sure patients are on the right drug at the right time.”
At many trusts, they are also making it possible to introduce significantly less expensive versions of biological therapies. In 2015, a biosimilar version of infliximab came on to the UK market. The “similar” is an acknowledgement it is not possible to completely copy the complex molecular structure of the original, but a demanding licensing process ensures there is no clinically meaningful difference in efficacy.
The only practical difference is the price, which is significantly lower. A biosimilar adalimumab is now on the horizon, and as increasing numbers of originator patents expire – across many therapy areas – it will be joined by many others.
York Teaching Hospital FT switched to biosimilar infliximab in September 2015. A year later, savings of £450,000 had been amassed. According to Stuart Parkes, deputy chief pharmacist at the trust, IBD nurses were central to the success of the switch. “They were important in providing information to patients, both over the telephone and within clinic visits, and also speaking to staff at the day unit where the infliximab infusions are administered.”
For Helen Terry – director of policy, public affairs and research at Crohn’s and Colitis UK – supplying that information is absolutely key. A switch is not a simple process, and can stir up deep emotions for some of those on biologics.
“For patients who have been on a very long, very painful, very debilitating journey to the point where they’ve been prescribed infliximab and found a drug that’s actually worked for them, then the fear of going back to where they were pre-infliximab is very real,” she points out.
“Some patients, if that anxiety isn’t addressed and acknowledged and understood, feel very threatened by this prospect of switching.”
“You have to counsel the patient properly – and this is not a 10 minute clinic appointment; it’s a good 40 minutes spent with the patient to counsel them properly,” agrees Karen Kemp, lead nurse for IBD at Central Manchester University Hospitals FT. The trust is now giving the biosimilar version to any patient who is new to infliximab – all have an appointment with an IBD specialist nurse before treatment begins – and are expecting cost savings as a result.
The patient’s view
“You can just pick up the phone to a specialist nurse and say: ‘You know what, I think I might be having a flare.’ And the treatment can be in place within days to prevent anything further down the line. When you look at the long term cost savings – the price per head of an admission per night compared to an IBD nurse’s salary – it just makes perfect sense to have these specialist nurses.”
Bev Davies, head of IBD patient panel, The Shrewsbury and Telford Hospital Trust
The irony is that the savings do not automatically go to the organisation doing the ground work to make them possible. As high cost drugs, the bills for adalimumab and infliximab are footed by clinical commissioning groups.
The way we’ve always felt about our service is that we don’t think it will be difficult at all to justify how much the nurses do, and that once they’re in post they will become indispensable
Yet to switch successfully requires work from the provider sector. It is why many areas are negotiating gainshare arrangements, in which savings are spilt between provider and commissioner.
In York, such an arrangement has made it possible for the trust to employ an IBD specialist nurse at its Scarborough site.
“It made the case for that post,” explains Mr Parkes. “I think we would have been going for that model anyway, because we only had a nutrition nurse in Scarborough who was doubling up a role to see some of the patients there. But certainly the case has been made easier by the fact we’re saving on the infliximab – I think the savings we had on the biosimilar were the enabler.
“Having the nurse at Scarborough means more patients from that area can be treated there rather than having to come 40 or 50 miles to York, and that they have a specialist who’s looking after their care.”
It’s a similar story at Royal Free London Foundation Trust, where savings of £2.5m over two years are anticipated from the use of biosimilars in gastroenterology.
“We have an agreement with the local CCGs that there will be some gainshare, so some money savings would stay with us and that therefore the trust would allow us to appoint a couple of extra IBD nurses,” reports Dr Murray.
He acknowledges the appointments are made on the basis of a limited timescale, and that the money won’t be present forever. “But the way we’ve always felt about our service is that we don’t think it will be difficult at all to justify how much the nurses do, and that once they’re in post they will become indispensable.”
A powerful case for specialist nurses
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