Cuts in the NHS are proving to be a very big issue for patients with mental health with many being forced to travel miles for care. In addition, it seems there is a massive gap in the treatment of children with mental health issues. A very close friend of mine has written her story about the battle she has had to have to get her son, diagnosed with ADHD the drugs he needs.
Unbelievable and of huge concern that it all proved to be so difficult. I am aware of other people struggling with getting their children’s needs met in the mental health arena and it seems to be getting worse and I am quite sure that there are other parents out there suffering as well. More support is clearly needed in such difficult circumstances.
Here is her story:-
Just a little over 8 years ago I gave birth in the back of an ambulance (rather quickly) to a little boy somewhere along the Fulham Road.
I thought the difficulty in connecting to my baby may have been due to being separated at birth due to complications with me, the emotional pregnancy during which his father decided to walk away, or the fact that he was a baby who didn’t want to be handled and cried a lot and slept little. While these surely didn’t help and further fuelled my postnatal depression, it seems there was more to the picture than this. From day one he seemed different to me. Having worked in midwifery for nearly a decade, I am familiar with babies and their antics. He was different. Some people thought there was something amiss, some didn’t mention it and others didn’t notice.
Anyway, 7 years on and still sleeping erratically and full of beans, it was finally suggested by his school that he may possibly have ADHD (a concern I had had for many years). This has since turned out to be the tip of the iceberg.
A diagnosis doesn’t necessarily bring action.
Following a trip to the GP we were subsequently referred to the Community paediatrician. This appointment came 2 months after the GP referral. The consultant paediatrician acknowledged straight away that there were clearly issues and I breathed a sigh of relief. Finally we were going to get somewhere, someone understood!!
Questionnaires were sent out to me and the school and returned to the Consultant to assist her in making a diagnosis for my son. In July this was followed by a second appointment, but this time my son did not attend. This is when we entered a vague and wishy washy world. Lots of talk, absolutely no action. I was told he had complex neuro developmental disorder and a long standing sleep disorder. My initial feelings of relief where dissipating rather quickly. I asked if he could have some Methlyphenidate (Ritalin). This was deemed to not be of great benefit and therefore my request was declined.
We plodded on. I asked if anything could be done regarding my son’s longstanding sleep disorder. I was half heartedly offered Melatonin. It was like an after thought. Hurrah! At least the sleep can be managed. The other issues, as per the Consultant, would probably resolve themselves and she would see us again at Easter the following year. (9 months later)
I excitedly ran from chemist to chemist until I found somewhere that had it. As I quickly learned, it is not a stock item. I must say, following his Melatonin which I crushed up into Nutella, he went to sleep. I had waited many years for an evening to myself. Over 7 years in fact. The wonders of Melatonin were short lived. Bedtimes were magical and he went to sleep almost punctually, only to wake up again a few hours later. He then may or may not go back to sleep anywhere between 5 and 7am. During his ‘unsleeping’ sleeping hours he was full of buoyancy! I would snooze when I could but then fell in to the habit of sitting him in front of the TV. Not the sort of parenting I ever imagined myself practising. Experience had shown me that working a 12 hour shift on a mere 2 hours sleep could have its challenges. Even with the distraction of TV, he was still very distracted.
Finding the right medication became my focus.
After reading extensively on the internet, I came to the conclusion that he may be better off taking the sustained release Melatonin. A quick phone call to the Dr to remedy this! A quick phone call it was not. GPs seem powerless do do anything once you say you are under a paediatrician. Getting hold of the paediatrician is nearly impossible! After a week of endless phone calls we had a prescription!! I was told though that all we really needed was a bedtime routine. I am not sure what they thought I had been doing for the last 7 years. But this was clearly something they thought I hadn’t attempted or considered. So the problem was clearly my fault!! It is worth noting that children with complex developmental disorders are renowned for having issues with sleep.
My son became a little distant and less happy towards the end of the Summer term and when the holidays commenced, he told me he did not want to go back to his school. Following much discussion and a very generous offer from my Great Aunt, we decided on trying out the local Independent School that September. He started very positively. Within just a couple of days, his teacher asked to see me. She was very concerned. She said he was a lovely boy but that there were clearly issues and she didn’t know if they would be able to meet his needs. He would benefit from one to one teaching and this was not something they were able to provide. He was to stay for a month and we would meet to discuss the situation there after. During that month I was called in at least once a week and many more times to collect my son, who due to his lack of sleep was too tired to concentrate.
Home schooling was the only option left.
He became more and more withdrawn and unhappy and had started to run away on a regular basis. The runnings away were accompanied by extremely angry and emotional episodes. It was decided that, following his one months trial, he could stay for a year. As long as I understood that he was unlikely to learn anything, the school would keep him on. Not great, but I didn’t feel I could move him again. He is not a child who handles change particularly well. Anyway, all the above was neither here not there because after the initial month he became so stressed and unhappy that I couldn’t physically get him in to the classroom and after a few days, couldn’t get him out of the house. He asked me to teach him at home.
I wrote to the consultant expressing my concerns. He was a school refuser aged 7! He was clearly extremely unhappy and the situation had most certainly not resolved itself and we had also spent a small fortune having an assessment by an educational psychologist. I didn’t feel we could wait until Easter following year (6 months) to see her again. An appointment letter arrived and we were to see the consultant in December. In the meantime, I registered him as home educated. Home education, without a very good reason, has never been something I have been very keen on. But I didn’t think there were any other options. We had also spent a small fortune having an assessment by an educational psychologist. We were told that since I had taken my son out of the state system we would have to pay for this. We left £400 the poorer. The educational psychologist had struggled to contain him in the room and we had to come back to ‘take control’. She stressed that he needed an urgent mental health referral. I didn’t disagree. I saw the GP. As per usual, they couldn’t do anything because we were under the consultant.
At our December appointment I showed the report to the consultant. She disregarded it! So that was money well spent. I asked again for medication, wondering how hyperactive a child has to be before medication is suggested. Despite his daily outbursts that could go on for over an hour several times a day, running away and crying wishing he was dead and could I please kill him, he was also at times, very withdrawn. Small trips anywhere became impossible and he rarely wanted to leave the house. We did however manage a daily swim. I feared that if we stopped, he would never leave the house again and would slip further and further into some kind of black hole. For the majority of the day I was unable to ‘reach’ him The consultant was not keen at all and advised that she didn’t think it would be a good idea. I got my way in the end and left with a prescription. She seemed annoyed because due to the nature of the drug it requires close monitoring and this meant she would have to see us again! Something had to change and if it didn’t work, at least we had tried it.
Might I add that prior to reaching this conclusion I had exhausted the realms of homeopathy, cranial osteopathy, aromatherapy, physical exercise, warm baths and bedtime stories. The initial reaction to Methylphenidate was quite profound. Getting him to do his writing was a near impossible challenge. On day one on the meds he asked me to leave him in peace. He called me back sometime later to show me all his writing. He had written and written and written. We were getting somewhere!!! I have heard that ‘you can’t teach, until you can reach!’ I could reach him and therefore was able to build something.
We saw the consultant again. She was very pleased with our response to the drug, seemingly forgetting completely that she had thought it would be a grave mistake to go ahead with it and that the only reason he was on it in the first place was because I pushed for it. The medication was changed to a sustained release version. Here our problems did an about turn. For some reason he didn’t respond well to this change at all.
His sleep was even worse. On a good night he would be asleep at midnight and still woke up a few hours later. Usually he was asleep by half 3 in the morning though this could be after 4 on a really bad night. The medication seemed to give him a complete personality change and I almost didn’t recognise him. His behaviour by the evenings was manic. He would run around like a demented wild animal or be in the corner of the room crying under a blanket. He only went to sleep when his body seemed so tired it just gave up. Right up until seconds before sleep, he was on the go. I asked to be signed off work. I called the GP. I then called the consultant. It took me a week to get hold of her even though I was booked in for a phone appointment. She seemed disinterested in my situation and suggested I have a routine. I explained that the Melatonin had no effect on sleep at all. She said I needed to give it when he was winding down towards the end of the evening I explained that there was no ‘wind down’ period. She had nothing to add.
After several weeks of worsening and very strange behaviour I reached breaking point. I phoned the GP, the doctor on call and the consultant. I said I couldn’t do another night and that I felt the situation was becoming more and more dangerous as I feared that at some point in the early hours of the morning, before we finally went to sleep, I was going to snap. I said I feared I was going to kill him and could somebody please intervene and help by either giving my son something that would make him sleep for more than a few hours or something for me so that I wouldn’t be bothered either way. I expected to have a visit from social services after a comment like that. Nothing happened despite all my desperate sobbing down the phone! I finally have some insight into how the unimaginable happens between parent and child. I feel great empathy when I hear of such horror stories, because I see only too clearly how it happens. And what is the point asking for help if it doesn’t come?!
Because I had taken him out of the state school system, we didn’t seem to be in a system at all. He wasn’t entitled to any tuition at home. I was told I could ask for him to be assessed for a statement. But we probably wouldn’t get one.
Having been fiercely loyal to the NHS, I then made a tearful (I am not a regular cryer) phone call to a child psychiatrist on Harley Street. We had an appointment for 3 weeks time. I asked the GP to at the very least to change the medication from the sustained release Methylphenidate to the type we were on originally. He improved or more accurately, it wasn’t quite so awful. The mania stopped but life was still tricky. I am not sure if the consultant is aware that the medication had been changed, nor am I sure if she is even that interested.
So we went 100 miles to the private Psychiatrist at £640 per initial assessment. There was a scene and my son ran away. The running away is anxiety inducing but in the middle of London was more nerve racking. The Psychiatrist saw my son for a matter of minutes. The session was abandoned and we booked a phone call appointment for later that day. I didn’t learn very much more than I knew already. However, he clearly had a far greater understanding of the situation and stressed how potentially dangerous things could get. He added Risperidone (an anti psychotic medication) to the mix.
When things are more settled he will make a further assessment of my son, but explained that I was firefighting right now and until life was calmer and the ADHD was better managed, nothing could realistically be achieved. It is a shame, given that all we needed right now was this extra medication, that we have had to wait for over a year in which time he has deteriorated at an alarming rate and become almost agoraphobic and I am unable to work. That unless I hadn’t known about melatonin or Ritalin we might never have been prescribed it and even though we were, it is me who has had to ‘jiggle’ meds around to, through trial and error, come up with what seems to be the most effective combination. Some guidance would have been nice. Friends and relatives have suggested support groups for myself. However, I first and foremost do not have the time to go to one and actually I would far rather have the issues with my son addressed and no amount of support at a group is going to get the job done.
I can’t help thinking that had he had the understanding and medication from the off, we may have stayed at his original school, he wouldn’t have had to reach such a state of unhappiness and I would still be at work.
