Faecal incontinence: improving care and removing stigma
Nurse Kelly Stackhouse set up a service that streamlines care for people with bowel dysfunction
Nurse Kelly Stackhouse set up a service that streamlines care for people with bowel dysfunction
‘I had seen four different doctors at two hospitals and all offered me a colostomy bag as I had no control over my bladder or bowel,’ recalls Gaynor Monk. ‘I was only in my 50s but was in a right mess with no control at all.
‘Kelly Stackhouse and her team at Rowley Regis Hospital gave me my life back and I am forever grateful to her for that. They are helping people who really feel they are past help and that no one cares because it's a problem that has a taboo attached to it.’
Faecal incontinence is a common, distressing and debilitating condition, which remains largely hidden, leading to social isolation and loss of confidence. Clinical nurse specialist Ms Stackhouse is passionate about breaking that ‘taboo about poo’ and enabling people like Ms Monk (see box) to retake control of their lives.
Why I cannot praise the FINCH team enough
Gaynor Monk writes:
About ten years ago my bowel and bladder functions started to become different.
I was unable to pass water without straining and I started having constipated diarrhoea and could only have a bowel movement if I pushed from my front passage. I found it all quite unpleasant and distressing and obviously uncomfortable, physically.
As my mother had started with very similar problems and ended up with bowel cancer, I was worried.
During the coming months I had various tests and was diagnosed with rectal evacuatory dysfunction and dyssynergia (which is a miss coordination of your pelvic floor muscles). Much later I had a proctogram, which showed that I have a posterior intussusception, an internal prolapse.
In the early days I did my pelvic floor exercises and things improved for a while. Then they went downhill so I contacted the bowel clinic again. I started on the full irrigation system.
I could never be too far away from a loo, which made life difficult and frustrating and limited where I could go and for how long. If I visited my family I would be worrying about whether I could last 40 minutes in the car. Holidays were a bit of a nightmare – I can tell you the number of public conveniences in Somerset for example – and I could only go shopping somewhere that has a decent loo.
The team of nurses has transformed my life
Now thanks to the FINCH team, all that nonsense is over and my life is transformed. They have been there at every step, from tests and examinations through to my diagnosis, as well as supporting me to irrigate and find the system that works for me.
I feel almost like I’ve come full circle and am back to that happy state where you don’t think about the loo, just go first thing and that’s it until tomorrow.
I cannot praise this dedicated team enough. They have organised peer support meetings where sometimes patients give a talk on why they are there or a visiting clinician or expert in some field might give a talk. At one meeting we did core exercises, it was good fun. We have a buffet lunch, a bit more talk, sometimes a demo of new gadgets.
But it gives us all a chance also to talk to each other and share our stories. We all think it's only us and of course it's not.
The FINCH team is brilliant and they constantly reach out to transform the lives of people who are at home, embarrassed, afraid and lonely. They not only ‘saved’ me and changed my life but did it in such a brilliantly caring fashion.
Delayed access to care
‘Patients with bowel dysfunction experience delays in accessing appropriate treatment services due to embarrassment and lack of enquiry from primary care health professionals,’ says Ms Stackhouse. ‘Despite the publication of three government documents related to continence services in the last decade, these services are still fragmented with asynchronous delivery and poor inter-professional integration.’
Ms Stackhouse, who works for Sandwell and West Birmingham NHS Trust, set up a service for faecal incontinence and constipation in 2009.
She developed this into the FINCH – faecal incontinence and constipation healthcare – service, which this year was recognised by NHS England as a champion for leading change and adding value.
‘It is a nurse-led service with consultant sponsors and is the only service of its kind in the West Midlands,’ she says.
The team helps patients with conditions such as anterior resection syndrome, symptoms caused by having part of the rectum surgically removed as a result of rectal cancer.
‘A lot of patients don't want to burden the consultant or the cancer nurse and live very poor-quality lives… It became my mission to see if there was something that could be done’
Kelly Stackhouse, clinical nurse specialist
Ms Stackhouse saw the need for the service while working as a colorectal nurse specialist. ‘A lot of patients don't want to burden the consultant or the cancer nurse with their bowels and they are very thankful for a cure so they accept and live very poor-quality lives due to the syndrome.
‘As nurses, we were often left scratching our head or referring for containment products. It became my mission to see if there was something that could be done.’
She sent a questionnaire to patients who had undergone an anterior resection. It became clear they had not understood the surgery’s consequences.
‘Often patients were still struggling with bowel management several years following surgery,’ says Ms Stackhouse. ‘It was apparent how debilitating this condition can be. These patients were invited to be assessed and treatment commenced.’
‘Audit shows exceptional improvements not only in symptoms but quality of life’
With her team and patients, she developed, piloted and implemented a four-stage integrated care pathway, bridging the gap between primary and secondary care.
‘Before the pathway, patients with bowel function problems would see three or more professionals prior to reaching the correct one,’ says Ms Stackhouse.
‘Audit shows exceptional improvements not only in symptoms but quality of life. The pathway has filled an important gap when it comes to the counselling, management and treatment in patients who undergo an anterior resection.’
Care now starts before cancer treatment is completed. ‘It has made informed consent more streamlined and patients are more aware of what to expect,’ says Ms Stackhouse.
The team sees all patients who undergo an anterior resection eight weeks after surgery, then again if the patient decides on a reversal. A structured management plan of what to expect and what to do are put in place, with continuing support.
Cooperation across disciplines and organisations
To establish the pathway, Ms Stackhouse engaged community continence nurse and cancer professionals, hospital managers and commissioners. ‘I had to identify GP champions, working closely with them to ensure their needs as well as the patients’ needs were met and achievable outcomes were set.’
She also set up a patient working group. ‘Their initial evaluation was positive but the pathway was adjusted to take on board their suggestions.
‘The issues that patients were most concerned about were access to continence services, GP awareness of continence services and prompt, effective management of their condition.
‘These all appear better in the new pathway. Participants reported a very positive experience.’
Ms Stackhouse and her team make the patient central to everything they do. They have created a network of peer support allowing them to meet others to share experiences, and tips and coping strategies.
The innovative work won Ms Stackhouse the Patient’s Choice category in the RCNi Nurse Awards 2016.
‘Some professionals still don't comprehend the impact faecal incontinence has on quality of life’
Changing the attitudes of staff outside of the clinic was the biggest challenge – and it still is. ‘Most professionals are very grateful for the input, but some still don't comprehend the impact faecal incontinence has on quality of life,’ she says.
She hopes to change minds with her service evaluation. ‘It’s only been the past 12 months that we have gathered more evidence that it makes a difference.’
Once the pathway was established at Sandwell, clinics were set up in the community and it was adopted by a neighbouring trust, Dudley Group NHS Foundation Trust, as part of the Black Country Alliance.
Pathway has improved care experience for patients
Gill Davey, community continence lead nurse for Dudley Group, says the pathway has dramatically improved care for her patients. She has been instrumental in raising awareness about the service among her colleagues, helping to embed the pathway in the community
‘If a patient has been seen in the FINCH clinic, the team will ask me to visit them home to see how they are getting on and if they need to be taught transanal irrigation (TAI) instead of bringing them back to clinic.
‘These patients are quite stressed already. They want to be seen at home and are worried about parking and getting to the clinic.
‘If they need TAI you can see the facilities and adapt what you are doing in their home. It has to fit into their lifestyle.’
Patients are delighted, she adds. ‘If there are issues they can call on someone local and I can pop in quite quickly.’
‘It is so useful to have the team as an ally at the end of the phone’
Gill Davey, community continence lead nurse, Dudley Group NHS Foundation Trust
She can refer inpatients for whom TAI is not working well, such as patients with multiple sclerosis who are experiencing relapse. ‘Then they bounce back to us,’ she says. ‘We already have that rapport and can follow up for as long as they need our support.
‘It is so useful to have the FINCH team as an ally at the end of the phone to run things through.
‘It is good for primary and secondary nursing teams – we are working across boundaries, forging relationships, which had been a stumbling block. GPs are grateful there is another service we can tap into.’
Connecting with GPs
Access to GPs was initially problematic, Ms Stackhouse recalls. ‘The working relationship that Gill had already established eased the communication in the Dudley area,’ she adds. ‘Distance was also an issue – travelling to all the GP practices to promote the service was extremely time-consuming, as was awaiting access to different systems and feedback on templates to ensure all working parties were happy with them.’
Now she wants to see services improved nationwide. ‘There is an elderly woman in Devon who does not have any local services and writes to me for support – she does not have email. I write back but there should be something local for her.’
Building an evidence base
She has set up a randomised trial to identify patient outcomes to strengthen the evidence for the pathway to be used nationally.
The team has supported the patient group in the production of the first patient-led newsletter, called Poo News, which aims to remove the stigma associated with bowel problems.
‘We are looking into developing an accredited educational programme too, to assist others in setting up a similar service.’
Ms Stackhouse is proud of the difference her team is making.
‘For nurses there is no more sitting scratching your head wondering what to do or where to go with these patients,’ she says.
Elaine Cole is editor, RCNi projects