My friend Anne and I spend a lot of time laughing. We are both full-time carers to our disabled children and we think it’s our sense of humour that keeps us sane. Sometimes the grins get a bit mad-looking and the laughter gets a bit manic but mostly we’re pretty good at finding humour in even the grimmest of situations. If cutbacks get worse we’re considering stand-up comedy.

Issues of incontinence are an unfortunate fact of disability life and the vagaries of continently-challenged toilet training have given us many a giggle over the years. Our personal experiences with our children may have been entertaining but there the humour ends.

All disabled people with continence difficulties are entitled to free incontinence products from their local HSE. Emily Logan, the Children’s Ombudsman has recently taken a hefty swipe at the HSE. She referred to its prevailing culture as ‘rotten’ and ‘self-serving’ and stated in no uncertain terms that it should be there to serve the public and not the other way round.

The incontinent disabled and their carers are placed in a very vulnerable position. Continuously needed incontinence supplies are expensive and cannot be afforded by either the disabled or their carers and so they have no choice to claim what is, after all, their medical and personal entitlement. But doing this can be a humiliating experience, as I found out when I became a single parent and found myself with no choice.

Our story is appalling but I’m telling it to illustrate the truth of Emily Logan’s words.

There is some debate about exactly how many marriages crumble under the strain of autism. It’s a lot and mine was one of them and so when my son was five I suddenly found myself alone with no income and unable to work because of the constant care he needed. I’ll cover the fiasco of benefit-claiming in another article but here we’ll look at the subject of nappies.

While my husband was in the family home and working we never claimed for anything my son was entitled to as we quickly realised it just wasn’t worth the aggravation and stress involved, not to mention the sniffy and superior attitudes we encountered. The extraordinary difficulties that severe autistics have with toilet training plus my son’s chronic gut problems meant that nappies were a constant necessity and I was informed by our disabiliy services provider that I should contact the local Public Health Nurse to put in a claim for them. I was given a name and number and duly rang her. When she came to see me her first question was whether I had considered returning to England now I was on my own. I said that no, I had no intention of doing this, to which she responded with a look that would wither a prune.

I explained my son’s gut problems, the severity of his autism, the extent of his intellectual disability and the difficulties involved in trying to toilet train him given his acute interaction anxieties, his total lack of verbal understanding and complete lack of speech..to name but a few. I told her how many nappies he required daily. She said she would consult with the HSE and left.

A week or so later she called again and immediately repeated her questioning as to whether I was returning to England, which by now was beginning to smack of racism. I was informed that nappies would be available the following month. In the meantime I continued to buy them myself. She had given me no indication that I should call to her clinic on any particular day and so I duly went along when my own stock of nappies ran out.

When I got there I was told there were no nappies for me because I had not turned up on the appropriate day and that she had, therefore, presumed I didn’t want them and had given them to someone else. All this transpired in front of a clinic full of people.

My marriage had just collapsed, my finances were dire and my son was at rock bottom. I was in no mood to take this on and so left it until the correctly allotted day of the next month to return, meanwhile continuing to buy the nappies myself just to alleviate the stress of this rotten treatment.

I returned at the next nappy-dispensing day, again in front of a clinic full of people, to be given a fraction of the nappies I required. I queried this (still in front of a clinic full of people). There were two Public Health Nurses based at this clinic and they both proceeded to tell me that I was using too many nappies and grilled me as to why I was doing this. I patiently re-explained everything I had initially reported, adding also the information about my son’s chronically adverse reactions to antibiotics and emphasising that leaving him in soiled or soaking nappies could set off a urinary infection that would require treatment.

I was looked at ( still in front of an audience) as if I had either crawled out from under a stone or was running some illicit black-market scam in incontinence wear.

I was told I could have the ‘standard’ allocation which worked out to an allowance of 2.4 nappies per day. I pointed out that one of those would have to be for night time leaving less than one and a half nappies for daytime use. Subtracting just one for daily soiling left 0.4 of a nappy to last a whole day.

This fell on deaf ears and the elderly audience who were waiting patiently to have their varicose and buniony bits treated appeared oblivious to my fate...which was to take my 2.4 nappies per day and leave.

I went to see my G.P who was disgusted and he wrote a letter stating my son’s requirements for me to take to the clinic. It made not one bit of difference.

Every nappy collection day was the same. I dreaded them and felt sick every time as I approached the clinic, knowing what was coming. On one occasion, as always in front of other people, I was asked if my son was going to school. I explained that we were waiting for a place to which the nurse snorted disparagingly and said loudly,

                        ‘Well, they’ll know how to train him properly.’

I was an ex-Special Needs teacher and had brought up three older children, none of whom were wetting themselves. Between his gut problems and his very disturbed sleep patterns I had, on this occasion, been up nearly all night. I’d had enough, I burst into tears in front of everyone and left with no nappies at all.

I explained what was happening to our keyworker at our service provider and asked her to act on our behalf. She did nothing, absolutely nothing, and I was later told by another staff member that the reason for this was because ‘she didn’t want to compromise her working relationship with the P.H.N’.

I rang the HSE and chronicled our treatment. The PHN manager that I spoke to replied snootily that I was in receipt of a Domicilary Care Allowance and that I should be paying for the extra nappies out of that. When I checked with the central department dealing with this allowance this information was hotly denied. I was told that the allowance was a payment to the carer in recognition of the round-the-clock care required and that the HSE were obliged to fully meet my son’s incontinence requirements. But nothing changed.

This ordeal went on for eighteen months until one day my son got a very bad dose of flu and I was unable to leave the house to collect his nappies. My neighbour told me that the family who had previously occupied our house had also had a disabled child and that the Public Health Nurse would drop nappies off if the mother was unable to collect them as the clinic was less than half a mile away and the nurses would regularly pass the house when on their rounds. I duly rang the clinic and explained how poorly my son was. I was told that under no circumstances did they deliver nappies.

I had reached the end of my tether, the reaching of which coincided with me spotting an advertisement in the paper placed by a team of solicitors specialising in no-win, no-fee medical negligence cases.

I rang them and explained the situation. They were appalled and said I would certainly have good grounds to pursue legal action if I wished.

But how do you get to a court when you have a child who is so severely autistic that you can barely get past the end of the road?

I took one last shot at sorting it myself. I wrote the whole saga down and sent it to a local TD, including the information regarding the solicitor’s advice. I explained to him that I really didn’t want  to go to the extent of taking legal action, I just wanted the nappies that my son needed. I appealed to him to help. It was like an enema to the whole suppurating system. Suddenly all hell broke loose.

Within twenty-four hours the manager from the HSE who I had previously spoken to and who had done nothing was on my doorstep, apologising profusely and bearing armfuls of NAPPIES!

I explained at length how we had been treated and I also explained the specific difficulties that pertain to toilet-training autistics, especially when severe.

She had the good grace to say that efforts would be made to ensure something like this never happened again but couldn’t resist saying as she left,

               ‘But we must make efforts to be continent mustn’t we?’

We did make efforts...for years we made extraordinary, continuous and sometimes gobsmackingly superhuman efforts but in spite of them all my son was not able to entirely dispense with nappies and trainer pants until he was fourteen years old, which is not uncommon in very severe autism.

We moved house shortly after this, still within the area but far enough away to be allotted a new Public Health Nurse who was always very kind, considerate and helpful.

I was only ever treated in this kind of way once more. Some years later I went to collect my son’s supplies (by now we had advanced to trainer pants) but my PHN was not on duty that day. Another one was, accompanied by one of the PHNs who had caused us so much trouble in the first place.

As we were now in a larger town there was always a queue at the incontinence supplies store. I was just a few yards back in the queue and so I was very clearly visible and I could also hear every word of the conversation that was going on. Another mother had turned up and the items she required were not in stock. The boxes that contained my son’s allocation were right in front of the PHNs and were clearly marked with his name. He has a very distinctive name and in any case they both knew who I was.

Raising their voices, looking pointedly at my son’s name on the boxes and then looking pointedly at me they told this mother that these items were actually better than the ones she had been using and would she like to take my son's instead? All the while looking at me to see what I would do.

I did nothing.  For two reasons. Firstly, my son was, by now, nearly continent with only an occasional ‘accident’ so the largesse of these ladies was no longer such a big deal. But my prime, and most delicious reason for refusing to react was that I had just commissioned my website and had decided that sooner or later, I would write about my experiences and make them public. Little did these charming denizens of the HSE know that they would soon be starring in my memoirs.

It's said that fact is stranger than fiction and in the saga of disability you certainly don't need to make anything up. The morning's bullying did not end there. I was not the only person they picked on that day and I find that watching other vulnerable people being badly treated makes me both sadder and angrier than I get on my own behalf.

Just before me in the queue (which snaked outwards from the doorway in the wind and rain) was a young woman who needed nappies for her elderly mother-in-law, who she cared for in tandem with looking after her own children.

A long debate ensued over the number of nappies she required with this lady practically begging to be given what she needed. Then, horror of horrors, like Oliver Twist she dared to ask for a pair of stretchy incontinence pants to put over the nappies, explaining that they kept slipping down, resulting in constant leakages all over the place which  made constant extra work.

In a loud, strident voice that the whole queue could hear she was told that no she couldn’t have any because these pants were only to be used with incontinence pads and if her mother-in-law's nappies kept falling down it was because she wasn’t putting them on correctly and, further, that someone would come out to the house to show her how to do it properly.

Where do you begin to comment on this  kind of gross inhumanity? Why do ‘professional’ people behave like this? How do they get away with it? How do they live with the knowledge that they are piling cruelty on top of everything else that vulnerable people have to deal with?

I know full well from my own experiences with my son that gravity working on the weight of a good pee in a neolithic HSE nappy soon brings it gliding down the legs no matter how tight you do the damn thing up. How simple it would have been to appreciate the reality of what they were being told and save this poor lady a ton of extra work by giving her a pair of pants......or even two ! 

Emily Logan’s use of the terms ‘rotten’ and ‘self-serving’ are descriptively accurate but they still don’t really explain why these things happen.

I have to include a happy ending to this story though. Just before my son became fully continent our local nappy service was taken out of the hands of the Public Health Nurses and was run by two ordinary, untitled members of the HSE  admin staff. What a difference! They were incredibly efficient and organised, which radically reduced the need to queue in all weathers, and they were also cheerful, kind, friendly, smiley, helpful and HUMAN!

So there is hope out there somewhere. Abusive behaviour destroys hope, which is the ultimate cruelty. The disabled and their carers are often coping with  extraordinary levels of difficulty, day in and day out. Hope is the one thing they need more than anything else.

Gaia Charis, July, 2010.