Children with ME, schools and the problems of FII diagnosis

[Trish]

They need a graph or a picture of some kind to show, as they say seeing is believing and at the moment my son and his struggles need to be seen.

When my son starts to come out of a PEM state he automatically and without being asked, gets dressed and springs into action. The downside to this is that depending on the domino reaction that takes time to come out to a PEM decline is just not seen by others just me.

Neither is HR of 160 when he first stands up in the morning, or when he laughs?

What ever it is we need something to show.

I agree a picture tells a thousand words and all that. Would it be possible for you to do a few short film clips of your son at his worst? You could possibly film him on your phone, and show it on a laptop. I remember Jen Brea saying on Unrest that one of her doctors just didn't get it about her symptoms until she filmed herself and showed it to him.

Very best wishes for Friday.

 

[ladycatlover]

@Tilly, saddened so much by your difficulties over your son's disease. While I don't have that experience, I can imagine at least a bit how awful it is to have a child/young person sick with ME/CFS. I will be thinking of you on Friday.

The first Tribunal (back then it was for DLA) I went to I felt strengthened and more able to speak by knowing my internet friends (eg @Forestvon) were thinking of me at the time and wishing me well. Very much hope that knowing we are all thinking of you and your son will give you the strength and ability to make your arguments well. Sending you both my best wishes from a field in Wales.

 

[adambeyoncelowe]

Thank you


Thank you that is great advice.

I haven't been down the rout of alternative practitioners, as it took so long to get a diagnosis of Cecelia his tummy does not tolerate multi vitamins.

I am looking into OT to help but at the moment they all recommend GET with CBT. In reality though travelling would be too much for him and as the school insist he has to attend hospital visits once ever three months as telephone calls are not accepted as evidence, this is as much as he can manage. Still looking though for one that will come to the house, but I need this meeting and the aftermath to be over until I think again about that.

An OT comes to you. They're supposed to examine your son's function and explore the house to suggest aids and adaptations. They do NOT suggest treatment. The local authority can supply them, but that's a very long process and wouldn't happen by Friday.

 

[Amw66]

@Tilly,
I hope yesterday was not as awful as you had anticipated.
I was thinking of you.
We are here if yiu need to blow off steam, or need a virtual hug.

 

[Suffolkres]

I think a group hug is in order @Tilly. I could squeeze the pips out of the Deputy Head and Safeguarding teacher at this school (an Academy....- what a can of worms!)
Unprofessional utter shambolic and worse. But you have some great local
officer support Tilly.....!

 

[Tilly]

@Tilly,
I hope yesterday was not as awful as you had anticipated.
I was thinking of you.
We are here if yiu need to blow off steam, or need a virtual hug.

Thank you so much and it is much appreciated as feeling as though you are dealing with this on your own as a family it is hard.

As Suffolkers has said it was shambolic and very unprofessional a bit like a comedy sketch that us mum's are very used to but are rather unbelievable.

First off I have been the one trying to pull everyone together as it should automatically be. Then you have the fact this is a high school and you would expect the teachers to practice what they preach; be responsible, fully prepared and organised.

Although this was a meeting called by the Safeguarding officer and now deputy Head it was no where on the system and I did not receive an invite from the school.

I arrived at the wrong time (I think that was most probably me taking the wrong time down) and even though it would take less than 10 mins to get to the school no one rang me to advise me I was late.

One of the councils SEND officers was show into a room and they could not find them? (they were in the next room from where the meeting was being held.

The home tutor was asked to carry on with the meeting which took place and which she got some work for Angus. This was a good thing as she had been asking now for a few weeks.

I think my husband now understands my frustration, and although I'm not forgiven for getting the time wrong we do marvel at how a school can run in this manor.

We all make mistakes, this is only human but not to make amends knowing how important the whole issues are, it goes to show that they are only too happy to put the stress on the parent and offload blame?

The home tutor the only thing they said was that they would like to see Angus in school and they call that support.

All I can say is that it felt as if I had been slapped with a wet cold fish :-D

The home tutor and the SEND officer are going to have a meeting at my home so the officer can meet my son who they are both impressed with how this young lad copes. Angus is our hero

 

[adambeyoncelowe]

So it sounds like everything, although shambolic, is actually going okay so far? Getting them to visit you at home is a good outcome, even if everything else is a mess. If they see Angus at home and come to understand his functional limitations, they will be more likely to offer support.

 

[Suffolkres]

f they see Angus at home and come to understand his functional limitations, they will be more likely to offer support.

But the school staff REFUSE to meet him at home..... The Local Authority officer and tutor have agreed, and they are as angry at Tilly about this, because they can see the need.
Academies are a law unto themselves and beyond LA control or influence.
It will take a court case ( civil) to get this lack and failure of Duty of Care by the School kicked into the long grass.
I suggest Tilly you attend the next Governing Body meeting and put in some questions on the back of your formal complaint.
Copy in the regional commissioner who oversees Academies too.

 

[adambeyoncelowe]

But the school staff REFUSE to meet him at home..... The Local Authority officer and tutor have agreed, and they are as angry at Tilly about this, because they can see the need.
Academies are a law unto themselves and beyond LA control or influence.
It will take a court case ( civil) to get this lack and failure of Duty of Care by the School kicked into the long grass.
I suggest Tilly you attend the next Governing Body meeting and put in some questions on the back of your formal complaint.
Copy in the regional commissioner who oversees Academies too.

Ah, I see what you mean. Academies are also bastards, yes. The Equalities Act 2010 still applies, so I hope there's something that can be done.

 

[Tilly]

So it sounds like everything, although shambolic, is actually going okay so far? Getting them to visit you at home is a good outcome, even if everything else is a mess. If they see Angus at home and come to understand his functional limitations, they will be more likely to offer support.

I think it takes a lot of working out. The problem is I have to not only understand how the system works, talk their language do all that is required without coming across in a way they would find offensive to their sensibilities. In other words they can say and act however they feel fit without being made accountable.

 

[Tilly]

But the school staff REFUSE to meet him at home..... The Local Authority officer and tutor have agreed, and they are as angry at Tilly about this, because they can see the need.
Academies are a law unto themselves and beyond LA control or influence.
It will take a court case ( civil) to get this lack and failure of Duty of Care by the School kicked into the long grass.
I suggest Tilly you attend the next Governing Body meeting and put in some questions on the back of your formal complaint.
Copy in the regional commissioner who oversees Academies too.

When I have worked out how to do this I will.

It is exhausting. Like tracking a needle in a moving haystack. If you have ever tried to look through all the steps of who is who and what you need to know and what you should do.

Wish me luck

 

[Suffolkres]

The Equalities Act 2010 still applies,

Absolutely Adam!
Hope this helps broaden the debate!

I happened to be well versed in this, professionally and personally.(Only "retired" /made redundant from LA Specialist Services for children with complex needs SEND, on the 31st August this year!)
This was my area of work since 1991( multi-agency working included).
I was also the NUT rep on EOTAS - workforce development etc for some time.


I exercised my rights on behalf of my son using this and the Disability Discrimination Act at the time (2000).

• Using these rights, I challenged for a Statement of Special Educational Needs (post 16), when refused, I took it to Tribunal and the LA had to do something. Which they did.
• I also took the scenario to the then Minister Baroness Ashton, at the launch of the DfES Statutory Guidance including sick kids - who promised support)
  
• Connexions National Disability Advisor was also involved.

On the back of this local challenge, 3 other students with ME etc also benefited.
The "solution" lay with the Local FE College and Access Course- who provided 5 hours of home tuition -post 16.
In 2000, this seemed unprecedented. It was done under the LA Council endorsed, "Education Other Than At School Policy".

With the loss of LA oversight and Academies......
ahhhhhh, the responsibility legally lies I believe with both the Governing Body/Academy Trust? This will need checking and case law anyone?

Either way, there is a requirement for them to comply with the law and "have regard" to the Statutory Guidance.
(BUT this guidance does not confer explicit rights to the parent/child's situation.)

The School should have publicly available explicit policies to cover this.

It should be for the Governing Body to censure the Deputy and others!


I will also arrange you some advice and dialogue with the County Council elected members, portfolio holders and the Scrutiny Officers for the council who are very experienced and are very good.


In your position Tilly, I would suggest
(an an appropriate point, when all reasonable effort has been exhausted and with the full support of any responsible LA officers- Inclusion Officers QA for Safeguarding Children's Safeguarding Board) - strength in numbers). We have a good local County shadow Education and Health & Social Care as well, portfolio holder for you.
This issue should be referred to Education Scrutiny and Overview as well as Health and Social Care.

• you / or "an another" write to the school GB and Trust, point out their legal obligations, and explain that you are seeking legal advice and/or reserve the right to enter a civil action/damages/costs compensation etc if an amicable arrangement cannot be met. The National Association of Children with SEN used to be helpful too.

https://www.scope.org.uk/support/families/education-sen
https://councilfordisabledchildren.org.uk/ (I am in touch with them already on this issue)
https://contact.org.uk/ ( Shilela Davis worked here and was excellent, had a daughter with severe ME - who has got better -and helped with the RCPCH stuff)

 

[adambeyoncelowe]

But the school staff REFUSE to meet him at home..... The Local Authority officer and tutor have agreed, and they are as angry at Tilly about this, because they can see the need.
Academies are a law unto themselves and beyond LA control or influence.
It will take a court case ( civil) to get this lack and failure of Duty of Care by the School kicked into the long grass.
I suggest Tilly you attend the next Governing Body meeting and put in some questions on the back of your formal complaint.
Copy in the regional commissioner who oversees Academies too.

Ah, I see what you mean. Academies are also, yes. The Equalities Act 2010 still applies, so they're skating on thin ice.

Absolutely Adam!
Hope this helps broaden the debate!

I happened to be well versed in this, professionally and personally.(Only "retired" /made redundant from LA Specialist Services for children with complex needs SEND, on the 31st August this year!)
This was my area of work since 1991( multi-agency working included).
I was also the NUT rep on EOTAS - workforce development etc for some time.


I exercised my rights on behalf of my son using this and the Disability Discrimination Act at the time (2000).

• Using these rights, I challenged for a Statement of Special Educational Needs (post 16), when refused, I took it to Tribunal and the LA had to do something. Which they did.
• I also took the scenario to the then Minister Baroness Ashton, at the launch of the DfES Statutory Guidance including sick kids - who promised support)
  
• Connexions National Disability Advisor was also involved.

On the back of this local challenge, 3 other students with ME etc also benefited.
The "solution" lay with the Local FE College and Access Course- who provided 5 hours of home tuition -post 16.
In 2000, this seemed unprecedented. It was done under the LA Council endorsed, "Education Other Than At School Policy".

With the loss of LA oversight and Academies......
ahhhhhh, the responsibility legally lies I believe with both the Governing Body/Academy Trust? This will need checking and case law anyone?

Either way, there is a requirement for them to comply with the law and "have regard" to the Statutory Guidance.
(BUT this guidance does not confer explicit rights to the parent/child's situation.)

The School should have publicly available explicit policies to cover this.

It should be for the Governing Body to censure the Deputy and others!


I will also arrange you some advice and dialogue with the County Council elected members, portfolio holders and the Scrutiny Officers for the council who are very experienced and are very good.


In your position Tilly, I would suggest
(an an appropriate point, when all reasonable effort has been exhausted and with the full support of any responsible LA officers- Inclusion Officers QA for Safeguarding Children's Safeguarding Board) - strength in numbers). We have a good local County shadow Education and Health & Social Care as well, portfolio holder for you.
This issue should be referred to Education Scrutiny and Overview as well as Health and Social Care.

• you / or "an another" write to the school GB and Trust, point out their legal obligations, and explain that you are seeking legal advice and/or reserve the right to enter a civil action/damages/costs compensation etc if an amicable arrangement cannot be met. The National Association of Children with SEN used to be helpful too.

https://www.scope.org.uk/support/families/education-sen
https://councilfordisabledchildren.org.uk/ (I am in touch with them already on this issue)
https://contact.org.uk/ ( Shilela Davis worked here and was excellent, had a daughter with severe ME - who has got better -and helped with the RCPCH stuff)

This looks very useful!

 

[NelliePledge]

Wow @Suffolkres thats great that you are able to use your professional knowledge and experience to help children with ME.

 

[It's M.E. Linda]

@Suffolkres that post #52 is a brilliant help. Thank goodness you have the experience and have been able to make suggestions to help Tilly through the next stages.

May be another ‘can of worms’ but is it worth getting your MP involved as well? Even if only by being kept informed of this breach of the Equalities Act by a local educational establishment in their own constituency.

As you, @Tilly , are rather busy at the moment, do you have a close friend/relative in the same constituency who could be the ‘lead’ on the MP side of it (but still copy the MP into the whole process that you are going through, as this situation is wholly unacceptable under the Equalities Act 2010)?

You often find that people’s attitudes change slightly when they realise that ‘higher powers’ have been made aware of the situation and are being informed or even keeping a ‘watching brief’.

Big, gentle, restorative hugs for the next steps.

 

[Suffolkres]

Keep the group hugs coming for Tilly! Every little helps breaks the frustration and feeling of being isolated and marginalised by the small minded service providers like the school, and some local Officers and politicians who are backing their officers.

RE MPs. A very mixed bag here in the east!!

We do have an excellent Ipswich MP, Sandy Martin, who signed the DT Open Letter to the Lancet and attended the Carol Monaghan debate too.

Tilly's MP and others locally in West Suffolk, like James Cartlidge are a disinterested patronising waste of space and a joke! (went to a meeting with him and his constituent so I know first hand!).

My MP Dan Poulter likewise on ME matters; he made a disgraceful Commons speech about children with ME, with factual error for which he would not apologise, nor correct and also former MP Ben Gummer.
Norman Lamb is not much help making all the right noises, but is a fence sitter...........

I have approached Peter Aldous too- drew a blank there. Jo Churchill- not responsive nor is Matt Hanncock.......

Personally, I wouldn't waste my breath on any other than Sandy Martin, them, but agree, it's good to say you have approached them.
I'd rather flog a dead parrot! Even a Norwegian Blue one! Can't cope with a horse atm!

 

[Tilly]

@Suffolkres that post #52 is a brilliant help. Thank goodness you have the experience and have been able to make suggestions to help Tilly through the next stages.

May be another ‘can of worms’ but is it worth getting your MP involved as well? Even if only by being kept informed of this breach of the Equalities Act by a local educational establishment in their own constituency.

As you, @Tilly , are rather busy at the moment, do you have a close friend/relative in the same constituency who could be the ‘lead’ on the MP side of it (but still copy the MP into the whole process that you are going through, as this situation is wholly unacceptable under the Equalities Act 2010)?

You often find that people’s attitudes change slightly when they realise that ‘higher powers’ have been made aware of the situation and are being informed or even keeping a ‘watching brief’.

Big, gentle, restorative hugs for the next steps.

I appreciate the hugs and would like to share all the best soft and fluffy marshmallow ones to you all.

My MP is Jo Churchill who has kindly sent me the same letter back even when it is in appropriate to do so. I may put this on my blog and ask her on twitter as to why this keeps happening. I would guess that when we move forward with the services in this area things will change and those MPs need naming and shaming? However like you say Linda I'm a bit busy as the moment and have put Jo's letters on the back boiler for now.

I just went through most but not all the symposium at Stanford and boy is ME messy. I have been wondering around with iphone and earphones in, talking and answering Ron and others on our behalf. Angus thinks this is highly amusing and a little frustrating. Amusing because I mostly do chores around the house when I listen to things like this, and I often carry a note pad with me and ask questions out loud. Frustrating as he was holding a conversation with me until he realised I was talking/thinking out loud and now he cant remember what it was but it was important.

I heard on one of the groups that MAGENTA is about to be released and this fills me with cold dread as I know this will kick many bad things off with our children and parents alike. Maureen Hanson said at the symposium that a biomarker is still a way off for good and solid reasons but due to the amount of evidence and problems in each area of the body it should be apparent that this is a physical illness. We all know that is not how it plays out in the UK.

How ever I have a slot on https://medicinegov.org/medlearnprogramme/ where I will be explaining with the help of Angus how PEM stops activity. So this should help?

 

[rvallee]

Not really sure where to put this because it straddles many topics. Most important is how ignoring a serious problem for decades has allowed for this old problem to fail the same way for the same reasons. The people behind this FII thing are seriously grotesque, misguided fools who commit unspeakable harm on fellow humans without any thought, fore or after, for consequences.

History doesn't necessarily repeat itself, it's just people doing the same things for the same reasons. History is not a "thing", it's the sum of people's actions and here there is a repeating pattern because people want the pattern to perpetuate itself. All of this could be stopped. Too many have committed to this ideology and prevent it from being stopped. This is an atrocity of choice.


Counting long covid in children

https://blogs.bmj.com/bmj/2020/10/16/counting-long-covid-in-children/

When children presented with this new multisystem disorder in the first wave of the epidemic, some primary care or secondary care doctors were unaware of the full spectrum of disease manifestation; parents from the long covid social media groups have expressed upset that they encountered “medical gaslighting,” or a trivialisation of their parental concerns. Parents have voiced fear that they may be branded as “Munchhausens by proxy” parents in their persistence to ask for healthcare support for their children. There is a need for clinicians, at primary and secondary care levels to be alert and aware of the multisystem symptoms in children through rapid guidelines or continual professional development.

This is all the fault of psychosomatic ideologues. All of this. This is the horror they fabricated and imposed on people who reject consent.

 

[Tilly]

Not really sure where to put this because it straddles many topics. Most important is how ignoring a serious problem for decades has allowed for this old problem to fail the same way for the same reasons. The people behind this FII thing are seriously grotesque, misguided fools who commit unspeakable harm on fellow humans without any thought, fore or after, for consequences.

History doesn't necessarily repeat itself, it's just people doing the same things for the same reasons. History is not a "thing", it's the sum of people's actions and here there is a repeating pattern because people want the pattern to perpetuate itself. All of this could be stopped. Too many have committed to this ideology and prevent it from being stopped. This is an atrocity of choice.


Counting long covid in children

https://blogs.bmj.com/bmj/2020/10/16/counting-long-covid-in-children/


This is all the fault of psychosomatic ideologues. All of this. This is the horror they fabricated and imposed on people who reject consent.

My heart hangs heavy. As in my area they will not recognise any form of dysfunction that they cannot see in a blood test many with POTS and Mast Cell dismissed and how many forced to FND is forever climbing. What then for them what then

 

[Invisible Woman]

A number of posts have been moved into this thread.

but at least in the US the healthcare system doesn’t generally care enough about ME/CFS to have patients kidnapped by the state, separated from their families and forced into GET.

That you know of. Remember most of these cases don't come to light until after the event and parents of children may be gagged by family courts.

There's the US (Boston) case of Justine Pelletier who has a mitochondrial disorder I believe:
https://www.bostonherald.com