Last month we attended an appointment with one of our children where the consultant opened, without knowing our family, by saying that he didn’t believe in their hEDS diagnosis. Actually he didn’t believe ‘type 3 EDS’ was real at all.
This led me to pick up my labels post again, two years on and this has even more relevance in my life today. If medical professionals are so keen to dismiss diagnoses from their esteemed colleagues, even when it is not their area of expertise, who benefits from the label and as parents why do we even bother?
We believe that our beautiful children are themselves no matter what label is assigned to their particular medical condition, we see all their amazing qualities in full technicolor. We love them dearly and love has no labels. Having a name for something does not change who they are deep down, their personalities, what makes they smile, what makes them proud. Similarly not having a name doesn’t mean that their particular combination of symptoms disappear like magic.
la·beled, la·bel·ing, la·bels or la·belled or la·bel·ling
1. To attach a label to
2. To identify or designate with a descriptive term; describe or classify
Many parts of the health service don’t agree. Some doctors don’t believe that the label even exists, this is particularly true for hypermopbile Ehlers-Danlos Syndrome (even though I am diagnosed and the condition is genetic), doctors in certain institutions still won’t say the words out loud. Some professionals won’t label them as they don’t want my children to ‘become’ their condition. So they give them another label that means the same thing. Does calling it another name change anything at all? Sometimes in appointments I get the feeling that they don’t want to make a commitment to my child by applying the label, a commitment to provide the correct level of care. With a multi systemic chronic condition like hEDS or a progressive neuromuscular disorder like CMT this care is likely to be ongoing and costly. With 70% of the NHS budget taken up caring for people with long-term medical conditions by committing to that diagnosis and label they would be adding more weight to that statistic. Other professionals and doctors just don’t understand the conditions at all and often don’t take the time to research, to learn or to listen. To get any sort of label in the first place is a complex and lengthy journey to embark upon. To do nothing is considered bad parenting to do too much then you are over fussy or risk fabricated induced illness (FII) accusations, there is a fine line and everyone has an opinion.
Here lies the problem.
Schools like labels, they are not doctors so find comfort in a nice little diagnosis written neatly at the top of a medical report, preferably NHS. All the guidance says that schools should be making provision for the symptoms a child has but in reality families need the diagnosis to prove why the symptoms are there in the first place, in order to begin to get the correct provision in place. Then we often need more evidence to prove that the condition is effecting them in a way that requires that provision at all because each condition affects each child differently.
It is a never-ending, quite vicious circle for the family, that can be both tiring and overwhelming. All we want is the correct medical treatment and the right educational provision for our children.
Schools really don’t understand the strain attending countless hospital appointments sometimes even before and after school with the one aim of improving our children’s care often leaving deflated and wondering why we bother at all. Or the enthusiasm needed to stay upbeat and motivate our children every day to do their physiotherapy and occupational therapy sessions. On top of managing their pain and fatigue.
The hospitals don’t appreciate the demands at school on our children in their struggle to be normal and just how tiring it is keeping up appearances. Often they do not appreciate how hard it is for others to understand an invisible condition which means that raising awareness rests firmly on our shoulders as parents just because we want the best for our children.
As parents we see it all, we guide the school, educate the doctors, and navigate our children through all these situations with as much humour and a smile as we can muster. We are not fighting against anyone in this pursuit but we are fighting for our children and will do with everything in our power to work with the professionals to get the best for our children medically and educationally.
The aim of the SEND (Special Educational Needs and Disabilities) reforms is to join up help across education, health and care. I understand the aim and in an ideal world working together will get the best outcomes for children but experience tells me that the world is not ideal. Each particular institution has its own agenda, the needs of the child may be at the heart of the issue as long as their particular budget, guidelines, time constraints or staffing implications have all been taken into account.
I see our role as the co-ordinator, ensuring the whole process runs smoothly, which is often a full time job in itself. I have learnt many skills since navigating my children through these systems that I did not possess before. Minute taker, mediator, report writer, PA, secretary, public speaker, educator (I know that I am a qualified teacher but this is on a whole new level), doctor, therapist, the list goes on… When all my children graduate I will have many skills to take with me again into the world of work, a skill set that could see me walk comfortably into a role in middle management, sadly I will have no reference!
As parents we know them, love them, care for them, fight for them, cry for them and when push comes to shove are ultimately responsible for them. We don’t care about the labels but will endeavour to seek them as long as we need to for our children to get the correct treatment and provision. A label will guide the professionals, increase awareness and help to ensure that they have equality in reaching their potential. At the same time we will raise our children not to be defined by the labels that they acquire, to protect them from their stigma. We will teach them that each and every one of us is different, that we all have strengths to play to and to happily embrace their perfect imperfections.
So who really has their best interests at heart? Labels or not, I believe we have to.
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