Children's education

Access to education for children with chronic illnesses-

As you may know my daughter is manly bedbound and cognitive function is not good. It has been hard for everyone to adjust to this as she was an active, very intelligent child.

There is no online educational provision in Scotland, such as that provided by Nissai/ Interhigh in the rest of UK and BEDNET in Belgium. There is not even a national equivalent of "Moodle".

At the moment I am working with others to try to open the door for virtual classroom based education as it would help many children with chronic illness who either cannot access mainstream schooling/ cannot attend full time.

This has meant asking awkward questions that authorities are not keen to answer - schools are great at attendance figures ( generally all in the 90+%), however asking for numbers for those with less than 80% attendance, and for numbers with chronic illness with no access to education are issues that many would prefer not to look at (3.5% of school population for latter)

We have learned the hard way, that school attendance does not work. The current system is skewed towards attendance. Children that can only attend on reduced timetables can miss significant " chunks" of subjects and are being set up to fail : non attendance can trigger social work involvement.

There have been two parliamentary meetings with opposition MPs, however it is clear that many would prefer to pass the torch on rather than carry it.

We have partnered up with Clic Sargent to provide a broader appeal, (people tend to understand cancer) and to benefit from their resources for research and PR. It is clear that we are going to have to create our own publicity to drive this forward, and that it will have to be a co-ordinated campaign covering as many outlets as we can.

I have no PR background -suggestions for advocacy would be appreciated.

 

Good Luck!
Sorry, I have no PR experience.

If I can persuade my stepsister or her daughter to watch Unrest she may be able to help with ideas. She and her husband run a small PR business and her daughter had Hodgkins Lymphoma at around 15 yrs old. She was at a small private school and they were pretty accommodating re keeping her in the loop when she was having chemo and she got reasonable GCSEs as far as I know. Then Alevels and went to reading Uni. She is fine now and 25.

 

Are you a member of the FB group Mums of kids with ME. There are lots of people with experience of education problems etc. Also, some of them may have PR contacts.
What about the Scottish MPs, including Carol Monaghan? There is also the list of MPs who went to the Unrest viewing at Speaker's House in Westminster.

 

Would it be worth contacting Jane Colby of Tymes Trust, who has a long history of campaigning for children's educational needs?

 

Thanks for the tips.
Tymes Trust have been trying since 2012 to enable this provision in Scotland . I am working with Lesley Scott of Tymes Trust - getting clic sargent on board is a means of widening the debate, together with other mums and Nissai.

Our education system, whilst having many positives, is parochial. There are significant differences in upper secondary and an issue of teachers not having " scottish" teaching qualifications . Chicken and egg.
I have successfully made the argument to our school that any qualification ( ie GCSE) is better than none at all. I want to ensure that if improvement enables my daughter to engage in some education, that there will be a suitable vehicle to deliver it.

We don' t think the true scale of the problem is known , hence FOIs , and it may be that if the overall picture is as bad as we think then politicians may either be embarrassed into action / see some political kudos in being associated with this cause.
Mental health has had a huge push here oner the oast couple of years and schools really struggle to provide an appropriate learning environment for some which can make issues more acute.

However, given political inertia - particularly when it' s sensitive issue- we have to try and move forward in a different way.

The success of social media in catalysing opinions is one way forward. Both from a parental and a professional educationalist viewpoint.

Using any media contacts to build on the positive ME coverage recently in Scotland via press and radio is another aspect. Any contact details appreciated - feel free to PM.

Utilising local pressure via local press, FOIs, councillors etc

FOIs requested by MP will be answered mid March. Action will be needed thereafter.

Any suggestions to raise awareness appreciated - all suggestions considered.
Thanks

 

Hi @Amw66 . I can't offer you any other suggestions unfortunately: it's well outside my zone. But as an ex-Head of Maths who has ME, and whose son also went down with it when he was 8, can I just say that state education is unbelievably inefficient. It is relatively easy to catch up on things later, and many subjects can be picked up quite quickly (my son called GCSE Geography GCSE Common Sense!). I think what you are trying to achieve is excellent, but what my son lost out on most of all was social contact, and it is vital to do the best you can to preserve as much of that as possible.

If I'm preaching to the converted, please accept my apologies. If I can help in any way, just let me know. I'm not the only one here with a child with ME, and you will find a lot of sympathy and support.

 

Have you considered contacting any of the big Scottish blogs? If you can get them to either mention it or allow a guest post, you'd have an audience of highly motivated, politically involved people.

http://bellacaledonia.org.uk/ and https://wingsoverscotland.com/ are the big ones that I'm aware of. (i.e. top 10 in the UK)

Good luck

 

Thanks @Luther Blissett , i' ll look into this.

 

Yes, i agree re the catching up/ general in efficiency. There is however unrelenting pressure to get your child into school and it can take a long time to get to the point where both parties accept that it dosn' t work, and home tuition, if on offer is 1-4 hrs/ week in limited subjects here with limited access.

The ability to have a real time classroom with social.interaction and recorded sessions to " catch up" if your illness fluctuates would make huge differences. This is what Nissai offer.

The 14 year old we know who trialled 4 subjects for 5 weeks loved it and cried when it was finished. She had already made friends, enjoyed the classes and achieved results. This child lives 200m from her school and yet has to go to a community education centre to essentially download work and submit it ( this is the only solution she has been offered , as a sop to her family who have been put through hell with threats to have her child fostered as she she was not attending school!)
It can also be used in schools, for those working in bases.

We' re trying to ensure that for those who can engage with education- and this will include lots of other conditions- that there is something more suitable in place. For those mildly affected the process of " going" to school in itself is an issue.
With this it is accepted that you may have to watch the recorded versions sometimes and that' s ok at 11 pm.
Some kids with nothing to show educationally will simply end up on benefits.

 

@Amw66 Roughly how much does Nisai cost? Is your daughter doing GCSEs, or whatever the Scottish equivalent would be?

 

Yes, the pressure is immoral: I remember it only too well - at one time we thought we were starting to go down the route of getting in social services. There was no online option available then (it was the 90s), so he had, at best, 3 hours of tuition a week, organized each half-term, but always taking a week or two to get going. The social benefit of having an online class would have been brilliant. I really hope you succeed in this.

I appreciate your fear here, but in my experience, children with ME often grow up to be well-suited to picking things up quickly later: they show a level of maturity, empathy, and determination that mark them out. The sad reality is that most of them will continue to have ME, so we also have to plan for that possibility, and that is where a social network is so essential.

 

My daughter has in the last couple of weeks had twins round. She has not seen them for a few years, but they were lovely and understanding and are planning to see each other at least monthly.
It was a real treat to see her so happy after seeing her peers, as it can so often be a two-edged sword

 

Just found this submitted by TYMEs
https://publications.parliament.uk/pa/cm200506/cmselect/cmeduski/478/478we49.htm
its from 2005 so I don't know if it still applies:
"
The Young ME Sufferers Trust works with Nisai Education to provide a virtual classroom for Stage 3 pupils with ME/CFS and free over-16 virtual education for students with ME/CFS in conjunction with the Learning and Skills Council.

Full information about The Young ME Sufferers Trust including an endorsement by the Prime Minister is at www.tymestrust.org

The Trust's "Tymes Trustcard" is a pass card for children with ME in school, endorsed on its launch by Education Minister Baroness Ashton and by the Secondary Heads Association and supported by Lord Clement-Jones CBE and Earl Howe."

eta: see also
http://www.tymestrust.org/pdfs/edpsychguide.pdf

 

I'm told that average is £1500/yr up to GCSE- it can be dependent on number of users. A levels are more restricted subject choice and priced per subject.
Interhigh is similar platform but much more academic, and from other parents' experiences, a bit less understanding. Key I think is being realistic about the number of subjects a child can cope with.
As my daughter is still enrolled but has nothing it would be good to get something for the per capita allowance.....