Trans-Anal irrigation (TAI) was first adopted in Alder Hey for bowel management in children with spina bifida for whom conventional management of bowel incontinence / chronic constipation was not working or tolerated. As the benefits became clear the service expanded to offer the device to a children with a variety of congenital and functional bowel disorders. The team also increased the choice of TAI devices in order to offer a greater choice for the patients’ needs. This shared learning will focus on the adoption of Peristeen, which is used in line with the NICE medical technologies guidance on the Peristeen TAI system for paediatric patients with bowel dysfunction.
Aims and objectives
- To offer an additional treatment option for patients and their carers for the management of bowel dysfunction
- To introduce TAI and to train patients and carers in a dedicated clinic and in a way which supports ongoing use of the system
- To provide ongoing tailored support for each family
Reasons for implementing your project
Peristeen was first adopted at Alder Hey in the nurse-led Urology clinic for the management of patients with spina bifida and spinal cord disorders. Children with these conditions often have problems with their bowel function, and oral laxatives and suppository treatment are frequently unsuccessful at managing their symptoms. Some of these children would undergo surgery to have an antegrade colonic enema (ACE) stoma or even a colostomy formed. Peristeen offered an alternative strategy for ‘managed continence’, whereby regularly emptying their bowel meant that these children could avoid symptoms of incontinence and soiling, without the need for an operation or stoma.
As Peristeen was offered to more children and benefits were seen, children with other conditions began to be referred to the clinic. The paediatric surgeons specialising in bowel problems identified that TAI could be beneficial to patients with constipation following surgery for anorectal malformations and Hirschsprung's disease, and also for some patients with severe constipation and soiling who were not responding to oral medications and standard enemas. Using Peristeen meant that children could stop taking oral medication (which often they did not take because of the taste!) stopped soiling, improved their urinary continence and avoided further surgery in the form of an ACE or colostomy.
In order to manage the increased demand, a Peristeen referral pathway was agreed. Children who might benefit from Peristeen therapy are referred by the colorectal surgeons and assessed in the nurse-led clinic. If appropriate, initiation of Peristeen therapy and training of patients and carers is undertaken by the nurses. Follow-up care is by telephone support and appointments when required. The team use this rectal irrigation toolkit to guide families and professionals through the care pathways (Sander, C and Bray, (2014) Examining professionals' and parents' views of using transanal irrigation with children: Understanding their experiences to develop a shared health resource for education and practise. Journal of Child Health Care. 2014 Jun;18(2):145-55).
How did you implement the project
Tailoring the introduction, training and support in the use of TAI, to the needs of the child, carer and family, can increase the chance of sustained long term use. In order to achieve this at Alder Hey, we have developed a clinical toolkit to guide this process. The initial assessment and training sessions take place over two 1-hour appointments with a nurse specialist and a play specialist. The first appointment focuses on information sharing with assessment of the family’s needs and expectations. The anatomy of the gastrointestinal tract is explained with age-appropriate models and the available TAI device options are discussed. The carer and child are given the opportunity to play with a Peristeen device, perhaps with a bowl of water and squirting it; desensitising the child to the equipment. The child can also take it home to play with. At this stage, further sessions with the specialist play therapist are scheduled if required. At the second appointment, the child and family will try using the device in the clinic bathroom. If successful, they then go home with a kit to use. Support is offered by follow-up telephone consultation, involvement of community teams and schools, and information about support groups and organisations. After 6 weeks, if all is well the child is discharged back to the referring consultant.
The nurse specialists were trained how to use Peristeen by the manufacturer when the technology was first adopted. Now the nurses train each other as required although the manufacturer representatives visit frequently to provide ongoing training and support. Patients receive the Peristeen kit and 1 months’ supply of consumables from Alder Hey and then the team request the patients’ GP prescribe the ongoing consumables (catheters) and then a new kit after 3-4 months. The team have found more apprehension among GPs when prescribing for chronic constipation where there is no clear cause compared to situations where the constipation is associated with an underlying condition for example spina bifida. The team try to avoid putting initial upfront costs on to the GP and explain in correspondence the benefits of the device to the child and the work that has gone in to preparing the child and family.
The team have observed that with tailored support and play therapy Peristeen can be accepted and successfully used by a variety of children and their families.
Despite the benefits, Peristeen is not for every child and family with dysfunctional bowel problem, it requires commitment from the child and their carers.
Based on the success of Peristeen in the Urology service, the medical directorates and teams at Alder Hey are looking to establish a nurse led bowel and bladder clinic and for one of the treatment options, where suitable to be trans anal irrigation, including the use of Peristeen.
Key learning points
- Tailoring the introduction and training to the child and carers needs.
- Offering Peristeen in a dedicated service with play therapy input.
- Good relations with the manufacturers. Adoption barriers can be shared with them and where possible they will try to help overcome these.
- The team try not to put initial upfront costs on the patients GP. When requesting a prescription the team explain to the GP all of the preparatory work that has been done with the child and the kit that the hospital has already supplied. Because the new kit is not required until 3-4 months after initiation it will be clear whether the device is benefiting the patient. All of this information reassures the GP and gives them confidence to agree to the ongoing prescription costs.