Bladder and Bowel - the saga continues

Here is a transcript of the recent letter Brigitte from the Ealing Parent Carer Forum sent out to parents with a further up date on recent devlopments with the Bladder and Bowel service. I think it's highly appropriate to thank Brigitte in particular for all the work she has put into this.

You may know that we have recently run a survey on the interim Bladder & Bowel assessment service that was put in place after we highlighted the lack of provision since approximately last summer. I attach the results of the survey for your information.

I also attach my notes of our last meeting with the Ealing CCG (Clinical Commissioning Group) on the issue.

Following on from my last update in April we met again with a CCG representative, highlighted some problems with the interim service and asked for clarification on other issues. Parents had generally reported that they had been contacted for a reassessment of their child and that the nurse had been friendly and professional. However, following on from the reassessment, products (nappies) were not delivered. There were also continuing problems around the poor quality of the nappies. Some parents had been told if they were unhappy with the product on offer they would have the choice of reusable nappies. This caused some alarm amongst us, as you can imagine.

The details of our discussion with the CCG are in the attached notes.

Following on from our meeting with the CCG I attended a meeting between the CCG and the NW London NHS Trust during which the interim service was reviewed and discussions about a permanent service took place.

I took with me product samples a parent had kindly given me to show the difference in quality between the old nappies and the new ones. It felt a little "show and tell" but we thought it was vital to highlight the problems and one look at the two nappies showed everyone the difference in substance and quality.

The meeting started with feedback from the NHS trust on the number of assessments the interim nurse (Alicia) has carried out, she had then finished all but 7 re-assessments and had started to carry out assessments of new referrals. I confirmed that the feedback from parents had been generally very positive about her. I was also reassured that referrals will still be accepted by professionals other than GPs, i.e. Health Visitors, Paediatricians, etc.

However, when I pointed out that following on from the assessments families had not received the new nappies NHS representatives stated that they were not aware of this. I was told that there was currently no monitoring system in place to check if Ontex actually delivered the products to the families. They agreed to look into that and I will chase this up.

I was then given time to report back from parents / service users. In addition to the non-delivery issue I raised the absence of an adult service (which they acknowledged) and spent some time talking about the quality of products where the samples came in handy.  Again, they only confirmed that they would look into this.

I suggested that Toilet Training should be a big part of the new permanent service. The Nurse Manager in particular absolutely agreed and said the current service was simply a "nappy delivery" service, not a full Bladder & Bowel service. I raised the issue of communication and pointed out how offensive some of the "offers of training" had been seen by parents. There was a lot of nodding along. Hard to know if they really took it on board.

I brought up the issue of reusable nappies and asked if they could PLEASE dismiss this idea entirely. I was told that this was not something they would consider. I felt reasonably reassured but had a phonecall from one of our Steering Group members 2 hours later who had been to see Alicia with her daughter that same morning and had been told it was either the nappies offered (parent asked for pull ups as the child is a teenager now) or re-usable ones. I have followed this up and will continue to raise this as we believe most parents would not see reusable nappies as a viable option.

Brief post meeting addition here:

We have today been informed via email that reusable nappies will only be suggested to parents of children who are able to be toilet trained. If you have been told otherwise please could you let us know? Thank you!
The positives from our perspective would be these:

  • The lack of a monitoring system for product delivery was highlighted in front of the commissioners and hopefully this will mean that some pressure will be put onto them to check on Ontex in future if they actually deliver the product following on from the assessment.
  • When the service specification was discussed I suggested to enter a commitment to deliver and monitor the service with parents and service users. The reaction was unclear but it may actually have ended up being in the Service Specification. 
  • The CCG deputy contract manager highlighted at the end that there was an urgent need for the CCG and NHS Turst to have a meeting with Ontex in the room as so many problems revolve around them. All agreed to do this.
  • They can no longer say they did not know about: poor quality product, absence of delivery and absence of adult service etc.

Whether any of this will make a difference will remain to be seen. I am hopeful that it will do so in the long term.  If we receive any further information we will, of course, share them with you.


Should you wish to comment or let Brigitte know of any personal experiences of the service you can contact her at