Action for ME - " Educate ME" -Scottish Campaign

Action for ME have secured funding from Scottish Government to look into and formulate proposals for improving services for those with ME in Scotland.

Part of this is awareness raising- Gail Ross MSP's evening event at Scottish Parliament has helped to create interest and concern.

My interest is to address the very real educational issues; in Scotland we do not have " hubs" or access to state provided/ funded online education and many children with chronic illnesses ( not just ME) are currently abandoned.

We also do not have ECHPs and any form of integration of care and education planning is sadly lacking/ difficult. There is no commitment /requirement to fund education post 16 years. (ECHP in England will provide input to 25 years old)

This thread is to keep people updated re progress and to enable comments to be made and taken forward - the Scottish experience can be informed by what does and dosn't work elsewhere - we do not wish to follow mistakes!

The initial meeting was in Glasgow on Sunday with 6 parents present. The meeting was not pre - prescribed re content and parents were able to set the points to be taken forward. I had input from 2 facebook parents groups of which I am a member. It was emphasised by all parents present that these online communities are where parents learn the most about the illness and feel most supported.

The aims are to

1. demonstrate need for flexible education options for those with ME and other chronic illnesses - this improves traction as other illnesss are better understood and suffer the same issues
2. improve awareness of ME and its impact on educational achievement capabilities, enable advocacy within education and prepare the ground to enable a funded pilot of virtual education.

Outcomes to be achieved

• preparation of information packs for schools to enable ME to be an "inservice day" CPD topic -particularly for those schools with pupils with ME. The pack to be visual ( video clips, potentially Unrest film too) as well as written and delivered in conjunction with parents/ advocates with experience of ME - ie not just a pack of downloadable PDfs that will reside at the back of a cupboard. people and stories make an impact.

• potential development of intermediaries (advocates) to mediate between parents and schools - reducing potential for conflict, " heartsink", and frustration. This may also address the huge pressure that parents and children are under.

• Statistics to be researched to demonstrate need for flexible learning options - FOIs; partnering with other charities with the same issues to maximise this issue ( cancer/ diabetes/ kidney etc).

• Naming and shaming re current lack of provision (there are areas worse than others). Create outrage - people are suitably shocked when I explain our own situation - people assume that there is adequate provision to enable children to fulfill their potential.

• use of media in support - Radio Scotland has been good for advocacy, local and national ( Scottish) press ( anyone with any contacts please feel free to contact me or @Action for M.E. ). We need to use outrage to maximise political gain.

Note re info packs/ general comments

• Part of the pack to bust myths - there is too much misinformation and conflicting information , and this is confusing especially for the newly diagnosed.

• The aspect most parents felt was that there was no ability to withdraw child from school / reduce school attendance significantly after diagnosis to maximise rest (probably as this is a benefit not recognised officially in health guidance)- there is no option but to attend and this worsens the illness.All felt that had they had advice to rest initially, their child would have had a better prognosis.

• Tymes Trust has a very good 10 points for education PDF. It takes so much energy to get into school that the capacity for learning is compromised. Being in school is not the same as learning, but social contact is good. It is a good resource to open up a dialogue.

• Also 6 months recovery/ 2 year recovery and what recovery actually means ( ie paced lifestyle). None of parents know anyone with ME who fits this description usually mentioned -6 months and 2 years and the inference that you get back to "normal", and its continued repetition has the potential to simply cause harm ( more punitive measures deployed after time thresholds). From parents on forums most know of those who have got significantly better at 4-6 years, but still have to watch that they do not overdo things, and cannot necessarily do all that they did before. It can also embue a sense of regret and disappointment when these milestones pass ad your child is not "recovered". Be upfront and say with ME there is generally no full recovery to the life you had before and then alternatives can be considered and acceptance of illness may happen at earlier stages.

• Reference was made to the international paediatric primer as parents have found it helpful both with GPs and Schools.

Targets for this are pack and supporting info for pilot to be ready for initial use post summer and December respectively


Children in particular have been failed by this charity's past history ; the current welcome shift in emphasis may mark this project as key to determining whether change is possible/ achievable- as hey say the proof of the pudding.....

 

Indeed, particularly concerning their head of Childrens Services being former head of AYME.
I hope for the children and parents sakes that things will work out for the better.

 

Most of the parents were fully aware of the politics involved, and I' m sure now that the commitment has been made, the parents involved will bust a gut to ensure it is fulfilled appropriately.

 

this sounds really promising @Amw66, thanks for starting thread to keep us all updated

 

https://twitter.com/user/status/999262168536244224


AfMEs ME awareness on NHS inform
https://www.nhsinform.scot/campaigns/this-is-me#me-awareness-month

"
How long will it last?
Most people with ME-CFS improve over time, although some people don't make a full recovery. It's also likely there will be periods when symptoms get better or worse. Children and young people with ME-CFS are more likely to recover fully."

"
Treatment

Graded exercise therapy (GET)
This aims to gradually increase your ability to function and manage symptoms. It should always be carried out by a therapist who is experienced in chronic fatigue and has appropriate clinical supervision.

Cognitive behavioural therapy (CBT)
This can be used to reduce the level of symptoms, disability and distress resulting from living with a chronic illness."


Source: Action for M.E.

https://www.nhsinform.scot/illnesse...pinal-cord/chronic-fatigue-syndrome#treatment

 

OK, I'm going to bet that actually the information that is quoted above actually comes from NHS Direct, or wherever they source their information from.

If you look here, https://www.actionforme.org.uk/what-is-me/introduction/, the information that they give is different. But with that picture at the bottom of the https://www.nhsinform.scot/illnesse...pinal-cord/chronic-fatigue-syndrome#treatment page, it does very much give the impression that @Action for M.E. are the source of the information used. And obviously if they are the source of the information then it's something they need to sort out as quickly as possible.

 

Personally I don't trust AfME an inch. They are dangerous to all patients, especially children if they really have the ex lead of AYME in charge of so called children's services. I can't believe the Scottish Parliament are taking them seriously.

 

Update
There is a meeting on Saturday, after which I will do a full update.

FOIs are awaited re attendance and illness to frame a context.

AfME staff , Theresa & Avril have been networking with other children's groups over the summer to try and frame this as a wider problem - which it is, and a teacher in West Lothian who has set up an online teaching facility using the GLOW system, devised by Scottish Government around 10 years ago, but underused, will be at the meeting. This is far from a virtual academy, however it will be interesting to see how it works and what potential it has - the current GLOW system is different from the piloted version which would have enabled an ill child to participate in education from home.
The concern is that this simply extends the postcode lottery of provision unless it could become mandatory. I am unclear as to whether this is a real time only option, or of there is a recording facility which could enable a " catch up" when children are unwell. Nissai would be ideal and no doubt could be cost effective given the numbers that could be involved, but the scale of the problem needs to be uncovered and made public first. Research from 2015 shows that 23% of 11-15 years olds in UK report that they have a long term illness or disability - whilst many can be effectively managed, many will have significant impacts on education.

The part that is so little understood is that for many being in school is simply not viable, and can cause harm. Getting this over will be important in the school info; from chatting to other parents diagnosis takes a significant time and children are often slipping from mild to moderate in the interim, with pressure from school being a significant factor. Many safeguarding processes are set into motion by schools, not medics.

Stories are being invited from parents and families to tell the story of the illness and the difficulties encountered generally, and in accessing education. This is a double edged sword as many wish to tell their story, but if their child is still in the educational system, anonymity is usually a requirement.

As the school packs are envisaged as being multi media there is a requirement for punchy graphics and phrases that depict and explain the illness, which for many has never left the " yuppie flu" era.
I was thinking of quotes from Klimas etc used for May 12th, potentially the video produced by @Emsho for the Scottish Parliamentary petition, and the excellent cartoon like graphics that contrast a regular person with a PWME in everyday situations (can't remember the artist so if someone can please let me know) - any other ideas welcomed. We are essentially wired up for graphics so getting things across pictorially to open up discussion seems a good idea. I appreciate that use of these will involve securing permissions, and that AfME will have to negotiate these. Clips of unrest would also be good to highlight different aspects.

There is a long way to go in Scotland. In researching chronic illnesses I came across a document published by Scottish government as the evidence base for providing psychological therapies - this is the link to a copy.

https://www.nes.scot.nhs.uk/media/3405552/matrix_-_children_youngpeopletablesfinal_2015.pdf

read the CFS section and weep. ( p38-39 and references on p 143-144 ) This is why things MUST change
Given that there seems little robust evidence for CBT it is depressing how much of a panacea it has become

Will do a proper update at the start of the week

 

From Thirdforce news today -
http://thirdforcenews.org.uk/blogs/if-the-government-wont-take-me-seriously-who-will

 

thanks Trish

 

trouble is they still appear to back BACME, which is a bit of a contradiction (trying saying that a few times with brainfog!)

 

https://www.actionforme.org.uk/news/educate-me-reflection-and-development-meeting/

 

I will post an update this evening re this

 

The Educate ME project in Scotland has come to a funding conclusion; it is my understanding that more funds are being sought to continue the project as all parents' prime wish is to pursue the establishment of a national online academy which will benefit children with chronic illnesses, mental health issues and some physical conditions which make full time education difficult.

It could for instance enable a child to attend school for say 1 subject if able, and then benefit from further educational input online with the ability to increase or decrease as health permits - it could therefore provide a joined up system. It could provide an entire educational input. It could provide the flexibility that is lacking.
There is no virtual online education in Scotland - GLOW, the digital platform has not evolved to fill this gap, (it's a bit like MOODLE with an optional messaging service) it is down to individual schools and individual teachers as to how they make use of it (the content is theirs) - and many pay it lip service. It was never embedded as a mandatory requirement within the Curriculum for Excellence, and so never quite achieved its potential. it could do a lot more.

One of the parents with experience of online virtual education provided a presentation to the group to explain how it worked and how beneficial it had been for her child.

AfME staff in Scotland were open to suggestions. They are recent staff members, and had not been involved with children with ME before and were I think shocked at the situation here and the rest of the UK. I think they found it difficult to get traction, as ME is not really acknowledged much in children here. It was also a learning experience for all. GET was discussed as was CBT, and AfME are aware of parent's opinions and of the lack of scientific rigour supporting these treatments.
I find timescales in large organisations frustrating as I have no patience!

The following were completed

• Contact was made with organisations representing children with other chronic illnesses ( asthma, epilepsy etc). Common issues re education were discovered. The aim is to tackle this with other organisations to have more effect as a whole.​
• ​
• FOIs were issued to all councils - from the fully completed part of the dataset the numbers of children with less than 80% attendance in secondary school was particularly concerning. There are no figures to correlate this rate directly with chronic illnesses, but this is the area where these will probably lie. School roll numbers with % prevalence rates for illnesses (ME at 0.5% based on Dr Keith Geraghty's recent paper, also sits within the range in the paediatric primer) graphed gives a good pictorial representation. Details were also provided re numbers of children offered home tuition, the subjects, the average provision in hrs/ child/week and the cost . I am still chasing up some info from FOIs to complete the data. AfME have a statistician who is looking at the data to see how it can effectively be used for advocacy. ​
• ​
• An online survey was undertaken targeted at young people to offer then the opportunity to describe their experience of education, what had been good , what had been not so good, and what they would have liked teachers and peers to know (this was worded differently than the recent UK AfME online survey for this age group). Some harrowing accounts were elicited from across Scotland and quotes used in the teaching presentation. One positive experience (a teacher had parent with ME and recognised/ understood what the situation was at an early stage- that intervention had a hugely positive effect), provided a case study and ongoing involvement from the young person. ​
• It was positive that there were responses and people had the opportunity to recount their experiences - these are voices that are often not given this opportunity.​
• ​
• Information was gathered for development of a webpage (as this was felt to be a resource that teachers would use, that would be accessible and could stand alone as a resource with appropriate links) and to produce a presentation and information sheets for teachers. Permission was gained to have the videos of Dr Nigel Speight and Dr Peter Rowe explain what ME means for young people in the webpage. There are other videos that will feature on the webpage -one by Dr David Bell and an animation re symptoms. The webpage is yet to be launched (not all the links are in place yet)- supporting pages are in the process of being revised.​
• ​
• A graphic was devised after discussion with a young person with ME which encapsulates info re illness and suggestions for support- this is very effective as it gets a lot of points across and is reproduceable in a number of formats​
• ​
• Parents provided a description of PEM (ie not just fatigue). Emphasis has been placed on belief, the nature of an "invisible illness" ,the need to rest, that children may not be able to attend school; that even part time attendance has impacts.The fluctuating nature of the condition and the potential to make things worse by overexertion was highlighted and sensory symptoms have been explained as these were felt to be underappreciated.​
• Suggestions for support have been given in a spreadsheet form that appeals to teachers (a parent was a teacher) that offer practical approaches where children can attend.( rest area, " chunking" of work, timescales etc)​
• ​
• A pilot presentation was given to teachers; this involved an interactive " spoon theory" session which really got over the energy issues and the impact this can have on children's lives. Teachers had no experience of a child with ME ( issues with diagnosis?), but there were a few " lightbulb" moments. Teachers are in a key position to both help flag up and support young people with ME​
• ​
• The result has been positive, with requests for follow on information / sessions for other staff members. ​

our own experience is that teachers have generally been keen to help, but the process/ provision available for us given the impact level of the illness gives us few options.

It is a start. there is a lot still to be done. the initial session shows that it can make a difference.

apologies for blank bullet points ( too late and flagging)

 

My neighbour teaches in the private sector and wanted to engage with tge Educate ME project to better understand ME. I had let her know prevalence rates and she quickly realised that this could affect kids in her cohort.

She was especially keen that S1 andS2 pupils ( she ' a guidance year head for these groups) could understand the illness. AfME delivered a session which included an interactive spoon theory exercise.

Pupils were gobsmacked that kids have to choose whether to wash their hair or text a friend. A real eye opener for all.


Hopefully interactions like this can help dispel the narrative
https://twitter.com/user/status/1172078203009212417

ETA- apologies if the above sounds flippant. My daughter lives in 4 walls and a car. Diagnosis itself is difficult here ( it is usually pvfs)
This is baby steps to challenge preconceptions, but locally, people are listening.