Dealing with CRAP!

Parents of profoundly disabled children have to deal with a huge amount of crap, literally and metaphorically speaking. Ironically the crap I’m dealing with at the moment is with the Continence Service.

After a lifetime of double incontinence, just over a year ago G started to use the toilet.

Okay, so for the mum of a 22 year old young man maybe this isn’t such a great thing to be boasting about but for someone like G, who has profound learning disabilities, and an estimated IQ of less than 20, its right up there on the list of major life accomplishments. It’s like a PhD for someone with PMLD (Profound and Multiple Learning Disabilities)

I claim no credit for any of this achievement. His staff team have worked really hard to achieve what I and other people who have supported him over the last 22 years have failed to do.

I attribute this to:

A) the consistency of approach they have taken and their perseverance – G now spends the majority of time with one team of people who know him well instead of being in a variety of environments, i.e., home, school, respite, afterschool club.

B) He may just have reached the developmental stage where he can now interpret what is body is telling him and react accordingly. All the other developmental stages took longer after all and some will never be reached, and…

C) He’s been using “pull up pads”.

Imagine my astonishment then when the local health services’ Continence Service decided, in their wisdom, to stop prescribing (note medical model of disability language here) pull ups. Instead changing his “prescription” to another brand and another type (without any assessment or consultation)

There had been a number of changes to the service including a new contract with a different product provider. And, G, as it turned out, wasn’t the only one to be told pull up’s were no longer an option in fact it was a “blanket” decision, seemingly based on cost, as no one else I’d spoken to had had an assessment of their relatives needs either!

Despite the staff trying to sort things out for G they were getting no joy so the team leader at his house asked me to chase up. I did with the following e-mail…

“G has had continence difficulties all his life due to his profound learning disabilities. His staff team have recently had some success in supporting him to have better control of his bladder and bowels during the day. We are obviously, delighted with and it’s a huge step forward for him. This has been helped enormously by the use of “pull up” pads. This product has now been withdrawn, much to our dismay as it was working well for him. G still has the occasional need for day time pads, when he’s out and about, longer journeys or when he’s not near a bathroom.

The pull up pads were far more dignified and subtle than the “inserts” now being provided for his day time needs. They gave him a degree of control. He was beginning to learn to pull them down etc. they were less bulky under clothing and more comfortable for him to wear.

 His night time incontinence however remains unchanged.  G’s staff reported that (and it’s also been our experience when he visits us) that despite trying the new prescribed pads for several months, they are not meeting his needs. They are finding that G needs his pad changing during the night and this disrupts his sleep. The pads currently being used are causing inflammation to the skin, causing irritation and G is scratching so badly that they now have to use a barrier cream. The old pull ups he used were made of a softer material which meant the skin was not irritated. The irritation means he pulls at the tabs, causing them to become dislodged and thus resulting in leakage…wet clothing and wet bedding. This is ultimately affecting his night time support needs.

This whole episode has meant that G has taken a big step backwards, just when he was making so much progress, progress that had taken years to achieve.  I fail to see why something that had so obviously worked in my son’s individual case should have been withdrawn, without consultation or reassessment in the first place. I am requesting therefore that G is once again provided with pull up pads that were clearly meeting his needs before the changes to your service.

 I would be grateful if you could advise me how we go about rectifying this and I look forward to your prompt response to this e-mail”

Finally a couple of weeks ago G got his assessment. I received the outcome of this yesterday and I’ve never read so much crap in my life…

“It would appear that G is drinking between 1200ml and 1500ml of fluid per day, fluids are not bladder irritants”…sorry but is it me, what the F**k  is a bladder irritant if fluid isn’t?

After some comments in the first part of the letter about G’s bowel habits and the fact he is regularly constipated. The continence advisor suggested an increase in fluid intake could be helped with the introduction of ice lollies. If he had bothered to get to know him he would have known that G has never eaten ice lollies, not even as a child, he can’t bear anything too cold, even drinks have to be warm and we clean his teeth with warm water because he won’t tolerate the cold!

After more crap..blah blah blah…even more crap!! Using long medical words to baffle and let people know that he was an RN, BSc (Hons) Continence Nurse Advisor . Professional chappy stated …

“G was aware of a call to stool 80% of the time

Err, doesn’t that mean that 20% of the time he’s not aware he needs to crap…I’m sorry but doesn’t this mean this young man still has a few problems?

He went on to say…

“In summary it would appear that the containment products that are being used at night time are perhaps a little less absorbent than is appropriate and I will send you some samples of more absorbent but similar size products…. it would be useful then to change from using Sudocrem to something water based such as Hydromol to manage any rash. It is possible that the reddening of the skin may be caused by the concentration of urine due to the limited fluid intake that G currently has. Zinc oxide and petroleum jelly based creams and ointments tend to leave a greasy sheen over pads and prevent them from absorbing the urine then just runs straight off the surface and can cause flooding of clothing and bed sheets”

  1. When using pull up pads, G never got a rash and so didn’t need barrier creams AT ALL! Rash only started when he used the new product!
  2. It’s taken 21 years to get to the stage where G can recognise he needs to go to the toilet. It’s taking a while but he is learning to pull up and down his own pants…it may take a bit longer to hone this skill, based on the last ten years I’d give it a while!
  3. In the last couple of months he’s tried to use the toilet in the early morning or through the night, even going to the extreme lengths and, for him, great initiative of finding the key unlocking his bathroom door (in our house bathroom door is locked because he used to flood the bathroom) the fact he’s doing this and managing to unlock the door is telling us something!!…the only way he can by the way
  4. What he was using before the changes to the service was WORKING FOR HIM already so why change what’s working?

The result is, according to continence chappy G can’t have pull up pads. I tell the parents I work with to pick their battles. Well I haven’t personally had one for a while so watch this space!

Of all the crap I have dealt with over the last 22 years, and there has been a lot. The literal crap was easier to understand and easier to deal with, it made perfect sense given what we were dealing with. This kind of medical professional crap makes no sense at all and well… it’s just CRAP isn’t it!

About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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2 Responses to Dealing with CRAP!

  1. sarasiobhan says:

    It is just crap. In a totally unacceptable way.

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