Dear Mr Hancock
The support that children and young people are offered by the NHS around mental health and ASD and ASHD is disgusting.
Wait … I don’t think that has come out right, I don’t think that will offend enough people. Let me try again.
CAHMS is inadequate
NELFT is inadequate
Matt Hancock, you are inadequate.
My job is to protect children. If I did not protect children then, quire rightly, my boss would fire me. If I let children down the way you do I would not wait to be fired. I would remove myself from the position so that more children were not failed.
However, after looking at the NELFT Trust Board and the directors within it , I believe that they are far from inadequate and maybe they have no idea how bad things are for the children of this county. It is my hope that Professor Oliver Shanley, Stephanie Dawe, Dr Caroline Allum, Jacqui Van Rossum, Bernard Scully and Malcolm Young will read this and then be able to answer a question I will ask at the end.
My daughter is 11. She has been waiting for a ASD and ADHD assessment since October 2018. We were told that her assessment would take place around October 2020. This month I have received an email, shown below, that states the following:
Good Morning Kendra,
Thank you for your email.
I can see XXXXX has been on the waiting list since October 2018.
I’m afraid there is still a long wait for an assessment. Our waiting time was two years before lockdown occurred and lockdown has hampered our ability to conduct assessments and elements of this still haven’t been able to resume. We are unable to give you any time lines as to how much longer you will have to wait for the assessment.
It is important that school and other services are offering support based on need rather than on diagnosis. If you have concerns about education we would recommend contacting https://www.iask.org.uk/ tel. 03000 41 3000.
If you are worried about your child’s wellbeing and feel they need support please contact our single point of access 0300 123 4496 available during working hours 8 am- 6 pm, Monday to Friday. This number can also be used out of hours for crisis support.
I will also attach the Kent Handbook which contains useful support whilst waiting.
No time lines. A child needs assessment and support and we are given no timeline. My 11-year-old child is trying to navigate through her first term of secondary school, hormones jumping around her body, been in lock down for 6 months and you want to tell parents no timeline. How inadequate is that.
Also…it may be important that school and other services are offering support based on need rather than on diagnoses, but you Mr Hancock, have culled funding and for support services and schools meaning that there are less staff and facilities to support my child.
So, I enquired if I could get an assessment if I paid
I can get my child an assessment within 6 weeks (give or take a week). She will get a full assessment and such. Even better, this will be done by a service that already assesses under 11s for ASD and ADHD for the NHS. I mean…my daughter is 11…but let’s not split hairs….so full assessment and support for y child in under 2 months by the same company that is already serving the NHS. Brilliant. What’s the catch?
The catch is £2,850.
Which I can’t afford. Not even a little bit afford. I could plead poverty and speak about being a single mum and such. But no one cares. So, let’s just say that I can’t afford it and if I could it would have ben paid yesterday. But also, a but of a kick in the teeth that now I am stuck between waiting 2 months or maybe another 2 years.
SO, I sent another email to NELFT. A begging email of I am honest. Begging for some kind of timeline. Something. I got back:
Good morning Kendra,
Thank you for your email.
I’m afraid we aren’t able to give specific time frames or dates for our waiting list. Due to high demand for assessment we have an extremely long waiting list which has also been impacted by COVID-19.
We are continually reviewing our internal appointments system, including the availability of appropriately qualified clinical staff to see patients and looking at different ways of running clinics so families can be seen in a timely manner within their local area. We apologies for any inconvenience caused to the family.
I will attach the Kent Handbook which contains some useful information whilst awaiting.
So, let me tell you Mr Hancock a little story.
Today at work I started to receive texts from my daughter in school. Yes , she should not be texting in lesson but…well…You’re not exactly doing what you should be at work either so we will just move on.
She texts me to say she can’t cope. That the lights are too bright in the science room and she can hear them buzzing, She said the chair is too high and is making her feel like she is going to fall. She said that she can hear what every single person in the class is saying and it is making her head “Full up”. She then starts sending me one-word texts
I then spend 15 minutes trying to navigate her via text to seek support in school. She can’t process what is being said to her so types
She got so overcome that I had to leave my job to go to school to get her. I am greeted with someone who asks, quite rightly “Are you going to try for a EHCP for her”. Oh, how we laughed. I laughed. The staff member looked at me strangely…I laughed so more.
I said ,,,my daughter has no formal diagnoses. And once the school staff member managed to get her mouth closed she said, “how has she not?”.
Because Mr Hancock, this has not only been going on since 2018. That’s just when the first formal assessment ever took place. My daughter has been struggling from birth. But she was overlooked by her primary school because …well… the school is a feeder for a grammar school and once it become clear that my daughter would not make the grade, and that she was not naughty and disturbing others… She was just left,, That’s the truth. So, I have battled the primary school for years for support. Then, when I was able to gather the evidence to get the assessment started….we waited another 2 years… and now we have to wait another two years.
Anyway…why was the staff member so shocked my daughter has not got a formal diagnosis? Hmmmm…maybe this will help you understand
She can’t hold eye contact with adults.
She can’t read facial expressions
She hates loud noise, bright lights and lots of talking.
She can’t touch certain things. Including some paper. Paper that is too “Papery”. She can’t touch pencils that are too “dry”.
She can’t wear tights that have seems. Socks that are too tight Shirts that are too stiff, skirts that are too swishy.
She can’t have her hair up (Because she needs to hide her face) and when its down in the wind she can get a sensory overload.
She can’t eat food with certain textures. She can’t walk to far away from walls.
She doesn’t know when someone wants to be her friends
She is so literal that its hazardous. In lessons, if the question is not set out the right way she will get it complete wrong as she can’t see the full context of the question. She will then see she got it wrong and get upset and say she is stupid. She can’t put her hand up because “Then people will know I’m weird” and she doesn’t know she can’t do it until she can’t do it.
She can’t use the school toilets because they are too “Echoey”
She cries and ask why she is different and when she asks what is different about her, as she sobs in my arms for the 8th night in the row I have to say WE DON’T HAVE A ASSESSMENT YET SO WE CAN’T SAY FOR SURE
I didn’t mean to shout
I have to hover around my daughter like a lioness over her cub, growling at those who don’t accept her ways because “She does not have a formal assessment”
And you know what my daughter thinks
She thinks she is stupid
Because we can’t sit and start to unpick and understand why her brain is wired differently because she does not have a formal bloody assessment.
And tomorrow I will send her in with her little backpack and words of love and leave her to navigate a system she can’t even begin to understand because she has not got the starting blocks to understand herself.
I had to call the doctor. Because she was saying she was going to faint today. She has not said that before. The doctor has known my daughter a long time. She was the one who started the assessment when the school would not. We spoke for ages and done various checks with my child…sore throat…can she bend her neck…the usual stuff. And then there was a sigh …
“Kendra…you are a sensible mum. You know what happened today”. I stayed silent. And the doctor said “It’s another sensory overload. She has always struggled in certain days”. And as I tried to keep back the tears I told her that I have been given no timelines and she said
“I’m so sorry Kendra, that’s inadequate”
My daughter is not the only one. I see children every day in my line of work being failed. Other parents telling me the same story, Young people telling me they can’t get the help and support they need.
Anyway…enough of me going on.
Matt Hancock. … I understand you have 3 children. So, I pose this question to you and also to Oliver, Stephanie, Caroline, Jacqui, Bernard and Malcom, please leave your answer in the comment section
Is this good enough for your child?
Look forward to your answers below.24 hours to reply …..
2 Comments Add yours
This is so powerful that I could cry. I am father of two boys, stepfather to three girls, youngest girl now 40. I have long thought MH a waste of space, as is the rest of this government, and now the chickens are coming home to roost.
I have no answer for you, but wish to express my extreme sympathy for your daughter and yourself.
I realise this to is inadequate but cannot do more.
I only wish I could.
Best wishes, and thank you,
John, the story teller fellah
Kendra, you know my thoughts on this. It’s no better in my area either, and it’s bad enough that children are let down, but us parents feel powerless to help, and all we want to do is make everything ok for our children.
I hope your daughter gets the help she needs and I hope you look after yourself too. She’s lucky to have you fighting her corner 🙏