You know the saying "Knowledge is Power"? However it seems the opposite is true at times and my experiences of the NHS over the past fortnight would sadly concur. What is happening in our society and particularly in the area of the public sector which works with children and young people chills me to the bone. The rights of parents are being eroded, invalidated and belittled, and professionals even at the lowest levels are being given an overly elevated status and level of influence, their views weighted above those who know their own children best.
It is - and always has been in this country - the right of every parent to decide their child's education. Parents are RESPONSIBLE for their child's education - which is compulsory. School, however, is not. How parents choose to deliver that education is NOT subject to State dictat and it is a fundamental liberty we should be extremely protective of. In the wake of Victoria Climbie there was a huge backlash against Home Education, purely because the press chose to advertise the fact that the poor child was "Home Educated" and did not attend school. From that moment the previous government (and Ed Balls in particular) led an insidious campaign against the Home Educating sector and attempted to removed the rights of parents to decide their children's education. The most important point which the press, past government and campaign groups like the NSPCC (who have little to do with child protection and more to do with making profit) chose to ignore and/or keep quiet was that Victoria Climbie was not educated in any sense of the word. She did not attend school but was not Home Educated. The failings of Social Services/CYPS/Whichever trendy anachronism currently in favour were hushed up and the finger pointed at libertarians seeking to meet their children's needs as they saw fit. Very convenient. Big Government interfering as only Labour know how...
But it didn't stop there. We now have all Children's Services under CYPS (Children and Young People's Services) and Social Services is enmeshed in Education and community support. We have Children's Centres and CAFs, Health Visitors and Safeguarding, all over hyped, over zealous, and all - most worryingly - run by public sector workers who barely scraped a "C" grade in English at GCSE. They do indeed support some but a part of their remit is to watch, observe and advise on the basic premise that we can't do it alone and without their help we would be lost. Big Brother is most definitely watching you and parents have never been under such a degree of scrutiny before.
This trend towards Big Government and public sector interference in family life is subtly becoming entrenched in society. There are manuals for everything, and more so for new parents than any other group. I utterly despise books like Gina Ford's "Contented Little Baby", written by an "expert" who had no children of her own and attempted to reduce the fundamental, organic and intuitive relationship between mother and baby to a cold science. It causes new mothers, awash with emotions and often struggling in a society lacking in female family support due to geography and modern lifestyle to question their instincts, themselves and their mothering abilities. I've written about this and the "
Science of Childcare"before. The vulnerable are being exploited, cynically fed the message that there is a "right" way to do things, that we are a homogenous bunch for whom there is a recognised process. If only!
But what if you have "nothing to hide"? Why then is an intrusive, "Big Brother" type public sector a problem?
Because so much depends on WHO is observing and judging. Like writing history, any perspective is subjective, viewed through spectacles all too often coloured with prejudice.
And that is precisely my point. There is an alarming trend towards prejudice and suspicion of those with knowledge and understanding. A judgemental public body does not expect a reaction, and certainly not an educated response. In the medical world this has been explored in a study reported
here which clearly illustrated the difficulties those with knowledge and understanding of their condition face.
There is no such things as pure truth and honesty and a government - ANY government - only tells you what it is in your interest to hear, or their understanding of it. This is why the NHS continues to propagate the "
EatWell Plate" despite the overwhelming evidence that our obesity epidemic is due to a diet which is carbohydrate heavy and demonises animal fats. There is a stream of educated and informed opinion on the NHS website which someone is tasked with deleting regularly, because they cannot answer it and lack the supporting evidence for their claims. The simple fact is, it might be the 21st Century but there is very little we are actually certain of - we are still learning and life is a "best fit" experiment by and large. So it is highly inappropriate for any centralised control of something which should be as individually focussed as education.
What is worse is the dissemination of these centralised "truths" via local teams of poorly informed individuals with little respect for anything - or anyone - beyond their next performance audit.
"Safeguarding" is rammed home at every opportunity and prioritised with suspicion being paramount. Parents are encouraged to access support, revealing details of family life for public scrutiny and assessment (the comments in the copious notes made after every interaction with a health visitor, nurse etc about your child and parenting would often shock you - they can be extremely judgemental, based on little more than a passing interaction.) If you fit their preconceptions you might get lucky, otherwise YOU are the problem. The square peg in the round hole again. For example the whole
CAF system is based on inputs and outputs through a
flow chart. Certainly in Suffolk in the past you could only have three meetings, and if there was no resolution at the end of this process you proceeded to Child in Need. Another flow chart System and so it goes on. And if there is no convenient route to a satisfactory conclusion the finger is turned and pointed at YOU, the parents. Because unless you can proceed to the "situation improved, no further action" box the only one left is to address parenting issues..... CYPS do not even need to consult, let alone defer to any experts actually involved with your child!
There are far too many stories just from Suffolk to list but the system fails far too many. The process however is destructive, intrusive, yet ignorance is
never an excuse for suspicion, yet it is legitimised in the current system.
A parent has FEWER RIGHTS in the family court than someone on trial for murder in a criminal court. Yet the way we view parents in this country is the real crime.
But I digress, this post is supposed to be about my experience over the past week.
My children have gastrointestinal problems, it's a family issue and some of us are more severely affected than others. The younger two have diagnoses of Eosinophilic Disease and there is a high probability there is an element of this in the issues the rest of us have. (See "
What is EGID? in my Recipe Blog.) I've been dealing with these problems since becoming a mother 15 and a half years ago, I know a fair bit about it - I do have a brain (although much of it is still mothballed after three pregnancies and years of disturbed nights!) and also a photographic memory. I won't apologise for either and like many other mothers I seek to do the best for my children - which includes researching and attempting to make sense of their difficulties. And it's just as well I and so many others I know do this, because too many times poor communication between health professionals, mistyped clinic letters (dictated and typed in INDIA in the case of GOS) causes potentially serious errors which informed mothers are the first to pick up on. After all, we are "in the firing line" in several respects if things go wrong...
So when H ends up severely constipated and impacted and sent to hospital as an emergency by our GP I like to think the GOS plan, our experience and my knowledge of my own child might count for something.
How wrong can you be?
The suspicion of a mother who knows her child, who is willing to work with them but wants to discuss options and possibilities and actually personalise a treatment plan is so shocking they might as well have sent me home and treated him without me. Ineptitude and appalling lack of professionalism on so many levels aside (they "forgot" to order his X Ray to see if his bowel was obstructed, a life threatening scenario) I am so angry at the patronising attitude from doctors who think they are God but have never met my child before. My son was subjected to six days of seriously sub-optimal care because they couldn't bring themselves to 1) ask me about him 2) listen when I realised they weren't asking and c) admit they were running into problems. Their refusal to deviate in ANY way from the guidelines the chose to stick to (don't get me started on those they chose to ignore) meant my non-routine child was given the wrong care and ended up in A and E two days after discharge. It takes a very strong person to stand up and say no, to question and challenge. But I did - and we made more progress in 6 hours than they did in 6 days. (The document I intend to write on Movicol will be coming in the future, for now I have
written about it here.)
This trend towards a quasi Victorian social arrogance - but with the educated and informed the new victims of our perpetual dumbing down and simplification of life is as alarming as the novel "Brave New World". The powers that be feel they need to save us from ourselves and administer the new logic, whilst "safeguarding" those who are not up the mark.
Sounds like something out of the old USSR doesn't it?
Knowledge is something to be proud of, to be valued, not to be arrogant over and always to be viewed as partial - a "work in progress" to be complimented, added too, edited. Never should it be something to be ashamed of - nor lack of knowledge an excuse for poor professional judgement. A parent's knowledge of their child is invaluable, not inconsequential, and it is an arrogant and strait jacketed professional who forgets that - and who forgets that they, like anyone else, are always learning. That ignorance is expected amongst parents is a pretty cynical type of prejudice, any parent has something useful to offer in terms of information and understanding of their child.
Prejudice is endemic in society - it always has been. But the current prejudice against those who exercise their individual rights, who make choices, who inform themselves and want to work WITH the system or alongside it but who do not want or seek State control of the minutiae of their lives or engage in an endless battle against the powers that be is a prejudice we are allowing to seep unchecked into our society. It both horrifies and alarms me. It can't end well.
Certainly plenty had failed to go in.
But I write on regardless, raising my Klout 
I have a son with Autism who feels pretty out of control at Christmas. Christmas presents huge challenges for anyone with an Autistic Spectrum Condition. That horrible, churned up, out-of-control feeling is usually pretty common around this time of year - and I'm not talking about the stressed parents trying to juggle family, extended family, work and Christmas!
I bought them a big box of chocolates to share and keep thinking of how happy he will be this evening with her finally home, I cannot tell you how happy his story made me feel. With an ageing population it's so easy to see the elderly as a burden, a responsibility which gives nothing back but nothing could be further from the truth. The older generation have so much to give, but the time and patience it takes to receive is all too limited in our high speed society.
With the death of Nelson Mandela I find myself remembering that quote from Machiavelli which was frequently mentioned during my A level History course.
We constantly kid ourselves that greater choice brings greater satisfaction and streamlined simplicity. Or that complex but "efficient" solutions which are anything but robust are "progress". But it's largely an illusion, and precipitates huge amounts of stress for many of us on so many levels - particularly at Christmas.
So I've spend all day mulling this over, whilst cooking, doing the ironing, feeding the cats, cleaning out the guinea pig, feeding the cats (again) and spending a not-inconsiderable amount of time photo-shopping my youngest son's class "Travelling Bear" into a picture of the Tardis in the absence of any exciting alternative photo opportunities..... Don't ask - but I think the result was pretty good for a first attempt!
“The importance of the quality of the provision small children have in early years settings is well documented, but as I found last week in the reactions to a speech I made, the whole topic is quite contentious! "Early years" provision includes nurseries, childminders, nannies, play groups and, of course, these are often part-time and mixed with time at home with parents or grandparents."
The Power of Coco Pops!
Three of our children attend an excellent private school which my brother and I also attended (many!) years ago. Our eldest has flourished there, really come into his own taking advantage of so many of the opportunities on offer - but interestingly very much in his own time. Initially he was wary of over-commitment and worked hard on the academic stuff, biding his time to leap into the unknown. This came relatively late, after several years of us wondering whether his laid back approach was really what we had hoped for when sending him there!
Many doctors perform allergy tests, for gut allergies which cannot be tested for, and then promptly dismiss the case because there is nothing for them to do. They may perform a pH study, previously the "Gold Standard" reflux test which cannot detect alkaline/allergic reflux or pressure changes in the bowel and possible allergic bowel inflammation is never picked up. Few hospitals can offer an impedance study, fewer still know how to interpret the results adequately. So because they don't have a clear answer many doctors are dismissive.
I often think of this quote, it has resonated deeply on many occasions, and none more so than the troughs in the rollercoaster that is dealing with chronic illness.
4.The person who operates on a crisis management basis, reactive rather than proactive. You know, the person who dashes in last minute, (late, see 1.) having forgotten something vital (see 2.) looking flustered and panicky. That's often me - and yet it isn't. I am a control freak. I admit it. But battling the chaos of reality in a war I cannot win is something I struggle to come to terms with. You cannot function at your best in reactionary mode, at least not if your forte is über levels of organisation with the task nailed before you leave home.
But maybe I'm missing something? Because actually, whilst on one level I deplore lateness, being let down, disorganisation and crisis management, there is no escaping the chaos which infects the lives of big families with or without the addition of considerable health needs. There is definitely a level of satisfaction and even exhilaration from "winging it" and getting by. Just. It wouldn't be my choice of modus operandi but I don't have that choice. So for now I will embrace my inner "person" and continue to fly by the seat of my pants... ensuring the fridge has a bottle of Pinot Grigio chilling come Friday evening!
There are many different reasons why children and adults need feeding tubes, not always the ones you might imagine either. There are those who can't eat, and those who can't absorb enough nutrition even though they appear to eat well. Those who won't eat, because you cannot imagine the fear involved in eating if you know swallowing could cause you pain, stop you breathing, stop bowel function - association is very powerful. There are also those who can eat and must not, for whom the switch can be painful emotional, psychologically..JPG)
If you haven't been there you shouldn't judge, shouldn't assume, but neither should you feel sorry for the person with that tube. Because feeding tubes save lives, give parents back their children, give back life to adults to spend more time with loved ones, facilitate living when barely existing is the alternative. They can restore normality and health - albeit a slightly altered version.
Just like any other disability, awareness is key, because with awareness comes understanding, and with understanding comes support. Because many mothers with a tube fed child feel a sense of failure - nourishing our children is our most fundamental role. It's like a "badge" of failure at times, when in fact taking that difficult step agreeing to tube feeding can be one of the best things you do for your child.
