The continence challenge may finally be met

When Sir Robert Francis published his report into the failings in Mid Staffordshire, he described continence as “this most basic of needs”.

But while few people will argue with the truth of that, it’s clear that it’s a need the NHS doesn’t always meet.

Successive investigations and reports have concluded that despite the amount of guidance available, the quality of continence care remains variable across the country, and poorer overall for older people.

Campaigners blame a variety of factors for this – ranging from the stigma of continence issues to the lack of incentives in the health system.

“It’s a big problem, and affects a lot of people,” says Dudley Robinson, a consultant urogynaecologist at King’s College Hospital Foundation Trust and treasurer of the UK Continence Society.

“But there are no real targets around it; it’s not part of the quality and outcomes framework, for example. And people don’t tend to talk about urinary incontinence. It might not be life threatening, but incontinence has a big impact on people’s lives, and if you can improve quality of life for lots of people, then that makes a big difference.”

There is, however, hope that it might be moving up the agenda. Late last year, NHS England published guidance to help improve the care of and experience of adults and children with incontinence issues. The guidance makes a number of demands and suggestions (see box) but will it actually make a difference on the ground?

Sarah Elliott, regional chief nurse with NHS England South, is determined that the document will not stall where others have faltered.

“We don’t want to be a document that just sits on a shelf; we want it to be implemented,” she says. “We know that over 14 million adults and 900,000 children have a bladder or bowel problem, and we believe that quite a lot of people suffer in silence. So they’re not accessing the advice, support and treatment they might need. We believe we can help a lot of people by giving them information so that in many cases they can self-manage, but that those who need treatment can access it. We do see it as a prevention, or secondary prevention issue, that can really improve people’s lives.”

NHS England is planning to help implementation by forming facilitator teams that will go into local areas and help them to improve their services. The teams will be made up of a commissioner, practitioner, someone with lived experience (she prefers that term to “patient”) and someone from the third sector.

The missing piece

“I see them as improvement teams that will go into different health and social care settings and facilitate the discussion,” she says.

“They’ll be looking at where local services are, and what needs to happen to make improvements. We’ll start with areas that are already doing some great work, and have a good understanding of what needs to happen – the areas that are ‘good to go’. Then we’ll spread it out from there.”

According to Ms Elliott, the process of setting up the NHS England Excellence in Continence Care programme, and producing the guidance, is aligned with the Five Year Forward View, in that it aims to refocus healthcare to prevent ill-health and give people more control over their own care.

But actual impetus came some time before the Francis Report, and the government’s response to it. “Francis said that continence was the most basic of needs, and it’s one of the government’s fundamentals of care,” she says.

She believes that clear commissioning plans for local continence pathways are required to make the vision outlined in the document a reality.

“When we started to look into it, we found there’s a fantastic suite of guidelines out there, including from the National Institute for Health and Care Excellence,” says Ms Elliott.

“People know what good care looks like. What’s missing is that commissioning piece [of the jigsaw]. So we wanted to create guidance that was really user friendly, and would help make a difference.”

It’s early days since the guidance was published, says Ms Elliott, but she hopes clinical commissioning groups will take it on board.

If you have been given antibiotics, sure as fate it’s the wrong one. It’s a waste of NHS money and inappropriate use of antibiotics

“Commissioners are trying to meet a huge range of responsibilities and population need. We hope this helps them sit down with their local providers and benchmark where they are, involve people with lived experience. And once they have started that, I’d hope the dialogue would continue, so that they can get feedback on the changes they are making. The other bit is the third sector. We’ve been working with a whole range of national organisations that help and support people. They’re really good at bringing together good information and advice.”

Some areas are already working to improve continence care. For example, all six CCGs in South East London, local providers, and others, have been working together to draw up new guidance to bring together primary, secondary and community care to revolutionise the way that services are delivered.

But while Ms Elliott acknowledges that there are good examples out there, she’s clear that more needs to be done – and patients agree.

Jacq Emkes, a maths teacher from Bedford, who has had bladder problems since she had surgery in 2009, was closely involved in drawing up the guidance, and is hopeful that it will make a difference.

“We wanted something that would be reliable, usable and factual, that would lead to a shared understanding between patients and health professionals.”

She believes the resulting document is something that patients can use to inform their own care. “Everyone can Google and come up with lots of information that makes them think they have everything in the world wrong with them,” she says. “It must be awful for GPs if someone with lots of pages from Google pitches up in the surgery.

“But if we can guide them to appropriate information, validated by the NHS, and written in a way that everyone can understand, that can benefit the patient and also the health service.”

She believes that continence has historically been a low priority in health and social care, and in society more widely, but stresses that it has a real effect on people’s lives.

We wanted something that would be reliable, usable and factual, that would lead to a shared understanding between patients and health professionals.

“The biggest impact is on moving around,” she says. “It’s all right when you’re in your own house, or a house that you know, but the big problem is travelling. Think of being on a train. You might not fancy using the loo, but how would you like to have to use it to get yourself clean, put a catheter in, and dispose of it?”

Wider benefit

She believes that services not designed around the patient’s actual needs end up costing the health service more money.

“If you have a catheter and know that you’re getting an infection, it takes seven days to get a result from a urine test. By that time, if you’re not on antibiotics, you’ll be ill and end up in A&E. Or if you have been given antibiotics, sure as fate it’s the wrong one, and you’ll have to start all over again. It’s a waste of NHS money and also means inappropriate use of antibiotics.”

Ms Elliott agrees there’s an economic, as well as a quality element, to improving continence pathways. Ensuring that people are on the right pathway – whether that involves being helped to self-manage, treated in primary care, or referred to secondary care – would help reduce pressure on hospitals from inappropriate referrals.

But there’s a wider benefit to the economy too, she adds, in that continence issues can make people reluctant to go to work. It might be “this most basic of needs” for an individual – but the impact of good continence care on the NHS and on society should not be underestimated.

 Case Study: A new pathway to clarity on continence

Bladder problems are common: around a third of us are likely to experience urinary continence issues such as overactive bladder or stress incontinence.

But according to Angie Rantell, lead nurse in urogynaecology at King’s College Hospital, many suffer in silence, perhaps through embarrassment, or because they think it’s “just one of those things”.

Some, thinking there’s nothing they can do, resort to wearing pads that contain, rather than address the issue. And even those who do approach health services have a variable experience: a lack of knowledge and confidence among GPs means that too many people are referred to secondary care as a first option – although they could quite easily be managed in primary care.

The problem is that even if people do mention it to their GP, in too many cases the doctor won’t know how best to assess and treat them

“People can find it difficult to raise the issue of incontinence,” explains Ms Rantell, who also serves on the executive committee of the UK Continence Society, and helped draw up the NHS England guidance published last year. “The problem is that even if people do mention it to their GP, in too many cases the doctor won’t know how best to assess and treat them.”

It was to tackle this, and to achieve consistency in services, that the South East London Overactive Bladder (OAB) care pathway for adults in primary care was drawn up. It was designed by a multidisciplinary team from a variety of organisations – including providers, clinical commissioning groups, GPs, nurse specialists, consultants and pharmacists – with the aim of ensuring that all patients get access to the best advice and treatment. Crucially, it means there is now one formulary covering all prescribers in South East London, so that patients can get access to the widest possible range of treatments.

Involving all six of the local CCGs, as well as secondary and tertiary services including King’s College Hospital, Guy’s and St Thomas’ Foundation Trust, and Queen Elizabeth Hospital in Woolwich, the project has resulted in a pathway that is simple to follow, yet deceptively comprehensive.

Sid Deshmukh, a GP in Sidcup, and clinical lead and governing body member for Bexley CCG, was the GP lead on the project. “It was a real multidisciplinary team approach,” he explains, adding that he has a special interest in this area and formerly ran a community urogynaecology clinic. “We all put out heads together and came up with the pathway.”

Easy to use

He accepts that not all GPs share his level of knowledge and interest on matters urogynaecological. “Other areas have higher priority,” he admits. “To be honest, it’s not like diabetes and dementia – urogynaecology has taken a back seat. It doesn’t tend to be life-threatening and it’s not a high priority.”

Incontinence seems to have been a low priority and there were real differences across South East London in terms of prescribing

Referral patterns also suggest a lack of confidence or knowledge about how to manage patients with continence issues.

“I do clinical triage for gynaecology referrals in Bexley and I feel there are some that don’t have the level of detail you’d expect. There are some where more could have been done in primary care.”

The pathway, with its clear advice, will help his colleagues, he believes. “I think it will be well received by GPs because it’s something that we’ve all worked together to produce. I think it’s really helpful as an aide memoir, and it can also be loaded into the clinical systems, which makes it very easy to use.”

Dudley Robinson, a consultant urogynaecologist at King’s College Hospital Foundation Trust and treasurer of the UK Continence Society, believes that action in this area is long overdue. He says that one of the issues historically has been a lack of consistency in the way that incontinence is treated.

“Incontinence seems to have been a low priority and there were real differences across South East London in terms of prescribing,” he says. “There was no joined up thinking in terms of formulary.

Urogynaecology is very good at King’s, and GPs value the service,” he adds. “At King’s, we had all the drugs for overactive bladder on the formulary, which is useful, because not all drugs for overactive bladder are the same, and some drugs are better than others for different people, so it meant we could tailor treatment to the patient.

“But occasionally GPs couldn’t prescribe the drug that we thought was best, saying it was off-formulary, or wasn’t in keeping with NICE guidelines. So we thought it would be useful to have a united approach to treating patients, wherever they lived in South East London.”

Bringing together all the players involved in managing overactive bladder to draw up a guideline – with real local buy-in – was never going to be an easy task. And, indeed, it took a little outside help from pharmaceutical company Astellas Pharma Ltd to get it off the ground.

Pav Sharma, then urology manager for South London with the company, says it was clear there was a need. “Reps working in primary and secondary care were telling me that clinicians were a bit confused about treatment options and pathways, essentially because there wasn’t a standardised approach. It wasn’t something that we set out to do ourselves; rather, it was a need that was being expressed to us consistently.”

South East London’s densely packed 1.8 million population – equating to around a third of the population of Scotland – had correspondingly high numbers of referrals for overactive bladder, but this wasn’t reflected in CCGs’ priorities.

Some 90 per cent of pathways gather dust. That’s why it’s important it’s rolled out properly

“The financial situation in the NHS, along with all the other pressures, meant overactive bladder wasn’t really on the agenda,” explains Mr Sharma. “So we approached commissioners who agreed that Astellas would work in partnership with key clinicians and stakeholders to facilitate a way forward.”

The pharmaceutical company essentially stepped back at this point, having funded a facilitator to take the process on. But Mr Sharma was delighted with the outcome. “The beauty is that all touch points for the patient were involved in drawing up the guidelines, identifying what pathway they could go on,” he says.

“The NHS is struggling with resources as we all know, but what we were able to do was provide the funding to bring all the right people to the table, and they took it from there.”

The facilitator in question was Mark Davies, director of Res Consortium, who is a consultant psychiatrist by background, and works with CCGs and providers to support better commissioning and service development. He acknowledges that urology has its own challenges.

“It’s not seen by everybody as the sexiest subject, but it has a massive impact. It can cause a lot of misery, but it’s not as sexy as cardiology, say, so it has been neglected.”

Bringing all the players together and finding a consensual way forward is crucial to pathway development, certainly in terms of getting buy-in, and sustainability.

The single formulary and cross-system involvement were key, he says, but it’s also vital that everyone takes it on. “Some 90 per cent of pathways in the NHS sit on a shelf and gather dust,” he says bluntly. “That’s why it’s important that it’s rolled out properly.

“Often there’s one person who’s passionate about something, and who will lead it. But you actually need to get a number of people, who have influence, to drive something forward.”

It’s not seen by everybody as the sexiest subject, but it has a massive impact. It can cause a lot of misery, but it’s not as sexy as cardiology, say, so it has been neglected

The process started with a small group of stakeholders, then with wider representation from the local health and care community, explains Mr Robinson.

“Essentially we hammered out a protocol based on NICE guidelines,” he says. “We wanted to make it as simple as possible, but give the background information at the same time.”

Building an integrated pathway that brings together primary, secondary and tertiary care has always been the holy grail for continence services as much as any other disease area, he adds.

He hopes that the joined up nature of this approach, and the fact that the pathway was drawn up with serious input from so many individuals and organisations, will grant it longevity – and make it meaningful.

Good for patients

The new pathway is now in the process of implementation, he says, and he is optimistic that it will make a difference. “I would hope it would mean that patients will be put on appropriate drugs, after appropriate interventions,” he says.

He hopes that the pathway reduced referrals to hospital outpatient services. “I’d estimate that of all the referrals we get currently, maybe around 40 per cent had been managed in some way [in primary care], including with drug therapy, before we see them. I hope the pathway would mean that more patients will be treated in primary care.”

Kate Pine, pharmacy team leader for women’s and children’s services with King’s College Hospital, says she believes the pathway would be applicable in other clinical and geographical areas. “It’s based on the NICE guidance, but the really good thing is that it’s on one side of A4, and is colour-coded, which makes it really simple.”

Ms Rantell agrees. “I think it will be good for GPs and for hospital and community services. But I think it will be good for patients too – and ultimately, that’s the most important thing.”