Thank you to everyone who contributed to our call for information on the Continence Service.

Background

Warwickshire Parent Carer Voice (WPCV) became aware of the challenges families were facing with accessing continence services and asked David Widdas (Designated Clinical Officer) for more information. He responded that Continence Services are generally regarded as having 3 levels and confirmed that:

Level 1 awareness and early support up to and including techniques such as incontinence alarms and dietary advice – this is provided by the school nursing service (Connect for Health (Compass)) provide that in Warwickshire.

Level 2 is for more complex cases where intensive support is required and includes assessments and reassessment for pads and that this is not commissioned in Warwickshire, and it has been recognised as a gap by the Commissioners. Children who have highly complex nursing needs and are under the Community Children’s Nursing team get a service but it’s unfunded and therefore not sustainable.

Level 3 is highly complex continence issues requiring psychological and medical consultants and that there is access to this level of care but waiting lists are long due to a lack of earlier intervention at level 2.

We were then asked by Natasha Lloyd-Lucas (Senior Transformation Manager for Children and Maternity at Coventry & Warwickshire Clinical Commissioning Group) for information about how the lack of continence services have impacted children (in particular autistic children).

We posted this image on our Facebook page on Thursday 9^th June 2022 and asked people comment, complete the WPCV feedback form or send us a message with their experiences. This post was shared on many other Warwickshire SEND Facebook groups increasing the reach. This paper is based on the responses received by Monday 13^th June 2022.

Feedback

“I have been trying for quite some time to get support for my child who has autism, PDA and severe learning disability and has practical and behavioural issues associated with continence. I was lucky enough to be part of a pilot continence project at his school several years ago, for one year, When this ended the nurse involved apologised profusely and said there was no one else I could not go to for advice and that the continence service for children was effectively ending and she did not even know who would be able to change my child’s prescription in future or support with continence reviews. Since then, I have searched for answers but keep drawing a blank. We have a private paediatrician for my son’s autism and anxiety and she has written to the adult continence service and got no reply, she wrote to my GP to ask about support specifically for continence and learning disability/ autism and my GP, unsure what to do referred us recently to the community paediatrician to see if they could help. I had last week the most awful phone consultation with the community paediatrician who was extremely rude, seemed to know less about the issues than I did, told me there was no continence service, suggested our private paediatrician should be sorting this out (??), offered to refer me to social services , said he should be assessed by camhs (??) and told me I should be paying for the continence products we do get on prescription when I asked if she could help with changing the prescription. She didn’t seem to have any understanding of the issue of continence in someone with autism and basically told me that my son is autistic “and that is just what they are like”. When I clearly said that my aim of the discussions to try and find continence support for someone who is learning disabled and has behavioural problems and anxiety heavily linked to his continence issues and also urgently needed his product prescription changing, she eventually said she would refer to psychiatric services – I questioned whether that was the right service for someone with learning disability and autism and she said she didn’t really know. She made a note of his needing a larger size pad and when I asked who that would go to she said no one! She didn’t actually listen to any of the presentation of my son’s very complex issue and then said she was going to offer us an X-ray and discharge us. I said I disagreed with this approach without her actually having seen my son because I felt she had not understood the issue and an X-ray would be very stressful for him and may not even be needed so I would prefer him to be seen and for us to be able to discuss the matter more thoroughly and show sone photos / video etc. She was really not happy with this and very rude, I believe she agreed but when I suggested before I ended the call that my GP had perhaps referred us to the wrong person (as the GP had seemed unsure herself who to refer to). The paediatrician seemed extremely offended by this and said “I don’t know what you want” and “I only deal with medical issues”. I have since heard from another parent on a local forum that I may be able to change my son’s product via the adult continence team and so this is my next port of call. I am honestly so sad and angry at the way children with continence issues are being treated. I feel like my son’s issues are simply being ignored. We and his school are doing everything we can – his school is out of county and they are lovely and desperate to help but don’t know how. I feel like I have explored so many avenues now – he should be having at minimum an annual review of his continence and products, the sad thing is with better support and services he may not have as many issues as he now does. And the final issue is the paltry allowance of products prescribed for an 11 year old child – 4 per day, which obviously we have to supplement ourselves by buying more – have tried challenging this when there was a Children’s continence service but never got anywhere at all. It is all just shameful and very distressing.”

“My son can become so overwhelmed or anxious about missing things that he has regularly spent hours sat in soiled underwear at school. My heart breaks for him. He might or might not notice himself, but school are somehow oblivious or say nothing. On the occasions they do notice, they send him home as they say they have no space for us to come in and help him get clean (not true). Also, when talking to GP about a prolonged need for pull ups at night, and his regular day time soiling, his autistic needs were not considered at all. Only the physical elements of the matter.”

“I’m having to fund and source and supply my gorgeous ASD SPD hypermobile young man’s pads and pull ups myself, which are not only costly, hard to find a continuous stock but it’s also a struggle to find an appropriate brand that can hold his night-time amount.”

“I wish there was a discount for nappies for my ASD boy he’s nearly 5 and there expensive he can’t have cheap ones he comes out in a rash and uses at least 6 in one day that being a good day”

“My son suffers with chronic constipation and trying to get him any help that he so desperately needs is a nightmare. He has been suffering for around the last 6.5 years. He is 8, still in nappies at night, I’ve tried to get him nappies / pads on prescription but because of funding they no longer do them. When he is really bad he is also in nappies during the day and when he is in hospital he is in nappies during the day, he can go through 10/12 a day and 4/5 every night.”

“There is no longer a children’s service and as lovely as the adult service are they don’t get it and you have to wait them to agree it after sending samples. The cut in daily amount means always buying extra products in-between deliveries. The fact there taking no new referrals too is shocking.”

“No continence service that’s accessible for autistic young people”

“The lack of continence service for children means that many parents including myself (I have a disabled child who is still using nappies and may always have to wear them due to his condition) are not getting the support they need and are having to finance expensive nappies/pull ups long after most parents have to do this.”

“My daughter is nearly 8 she is severely disabled and incontinent, for years myself and various professionals etc have tried to get help from the incontinence team to no avail! I’m now at the point where the biggest nappies that exist are starting to become tight on her but still no help!”

“I now have a 7 year old ASD child, currently still in pull ups. When he first started at his specialist school, the nurse explained she was no longer able to do a referral as there was no longer a service. Prior to this the health visitors referred us to Compass incontinence service, which I attended a meeting, however this was aimed at children not on the spectrum. I spoke with another person on the phone, who apparently had some knowledge of children with learning difficulties, her attitude was well he’s got to learn to go on the toilet. We need a service in this area who understands ASD and toileting. With my son, it’s not just that he doesn’t like using the toilet, he sometimes doesn’t realise he needs a toilet. Or the sensation comes before he can get there. Accidents then happen and we get a set back. I made a complaint to CCG, and they just said to go through my doctor. My doctor said all they could do was make a referral into the adult service. 2 years later and we are still hoping, not just for my son, for every parent who needs help and advice. Having to pay a premium on nappies due to age and size, yet if we had a referral from the continence team I could get them reduced. It’s all shocking, there are a lot of families in this situation. It’s like our children don’t matter”

“There is very limited continence service here in Warwickshire. There is need for pads and products.”

“There is no continence service for new referrals. People who are already getting prescriptions can carry on getting their 4 per 24 hours though. They don’t care how many we use. I was told to use DLA for extra.”

“Existing continence service users lose the service when the child needs a bigger size. They are told the continence service has been decommissioned.”

next steps

This feedback is being used by the commissioners in the discussions to get a service commissioned. We are hopeful that this will be seen as a priority and will keep working with them and your feedback to shape the service – watch this space for updates.