NICE guidelines and the needs of children with ME

Moderator note:
This post and several following posts have been copied or moved from this thread about the NICE guideline review appointments to enable discussion of issues raised.

This is how I see it pan out:

All the main players are in the new or only CFS centres, all are psychological based. They are the only ones that know ME/CFS because they treat and have the research; that will be their argument. All other doctors are taken down including the ones who believe EDS is not a psychological behavioural condition (MUPPETS), children are already having EDS diagnosis taken from them and most parents don't know about the problem, as it is never discussed. POTS is just an anxiety so this again will be dismissed.

There are no doctors left that treat ME/CFS as an illness, or they hide so they don't get taken down. Patients asked for centres to be closed because of this problem especially with the children. This is an important point due to the fact parents need letters to give to the school so we have to play the system. We cannot make complaints, again because we get accused of FII and anyhow what Dr do you go to who will stand up for you and your child? Private diagnosis are thrown out and point the finger at FII. If you look up safeguarding on RCPCH and NICE you will see how this is being handled. Who is counting the FII accusations and which Dr or areas make the accusations. What happens to the children when they are taken? You just have to look at Kariena Hansen. Notice the Paediatric said he will still take patients for stays in hospital. How many have this treatment? Remember if children are taken mostly they are gagged by the court.

MAGENTA (among others)about to be released along with the shopping bag trial all the main players are connected to CBT and GET. If you read the comments on the scoping you can see a clear path to Functional Neurological dysfunction, as alluded to on the neurological comment on the draft scoping, this will then become the way to diagnose ME/CFS. In Ireland they are already taking diagnosis away from some that have MS patients that do not have enough lesions or epileptic type fits with no evidence of epilepsy. Celiac can cause fits and this again gets hidden. How many ME sufferers have this type of fit?

Malaise will take over PEM and become illness beliefs, which is why I hate the term. Sickness with no post exertional will be easy to convert the doctors mind and lead into integrated Mental and social health care with isolation being part of this and being promoted by the media, our children are again going to feel pressured into social situations and back to school. This is the main focus on the scoping document. There is no research they would consider that would dispute this and many people will agree this is a good thing to combat - social isolation. This gives them safe ground with full agreement from all, like they did with activity and exercise. They will not be looking at harm or an other treatment?

FII will be brought in as parents who cannot manage their children or emotionally have major issues and seek attention, this is already being played out from my personal experience. There are many radio interviews going on with the main players in the Biophysical SMC. There is a surge in research with mothers who have been accused of having FII. They will be coerce into going into/on to trials so that they can get their children back.

One of the laymembers is a 17 year old who has had ME since the age of 4. I shudder to think how strong this person will have to be defending against the Paediatric that Alena Lerari sat next to.

I have a lot more to say but need a boat load of coffee.

 

What happens with the children is that the treatment does not work they dismiss you or make your child attend inpatient stay. What ever the condition when you leave their care your child is counted as cured.

Figures are not going to represent what actually happens if they are not truthful with the outcomes. No child has measurement of physical ability. School figures are manipulated by school, so if a child makes it to registration that is attendance, but does not reflect the reality. Therefore, if they go home an hour into school day it looks as if they are improving. This happens on the trials too, discharged from trial is recovered or on going treatment. This problem is compounded as a parent if you can manage to get your child to school regardless of the problems caused by PEM it means the attendance/safeguard officer is off your back, as it is the school that send them home. The impact on the child is... well I have no words to describe this or as a parent who has had to do this to make sure I keep hold of my child his now bedbound on good day housebound and the guilt is as you can imagine.

 

Like you say they are bound by lots of catch 22 mostly who is putting the money in. I don't blame them, I blame the system of not reporting harms, Doctors (not all) allowed to gaslight those who stand up to be counted but most of all not listening to the patient. They are not passive. accountable and responsible people who run the centres they know what they are doing and I am mostly on the receiving end of trying to support parents and I am at the end of the line, I have nowhere to turn.

I was at Westminster the other week for a Do No Harm meeting it is about time we started to talk about the children taken into care. https://www.uclan.ac.uk/news/childrens-services-uclan-study.php Andy gave us some information.

Out of 600 cases Fiightback announced at Westminster they have lost 10 cases in the last 2 days. This is just one group fighting for children with complex needs.
https://www.bailii.org/ew/cases/EWHC/Fam/2017/518.html if you go to 1:38:22 you will hear Leigh talking about how this happens with Social Workers, remember taking into care is on the OFSTED report as safeguarding extra points and Social Workers get extra funding.

The hickman line in this court hearing https://www.bailii.org/ew/cases/EWHC/Fam/2017/518.html is a home one that cannot be tampered with, and this was later alluded to in the judges summing up. At the very bottom there is a mention to CFS. Yet the Doctor states this is not life limiting and H can live a normal life. Connective tissue POTS CFS.

This case is like many others, it is just this one has been made public for all to acknowledged the appalling manipulative mother. Me in a court case would come over the same. Remember the local authority will chose what evidence to protect the child, the mother and farther have no rights and get no financial support and because Solicitors work is mostly against parents (as they get paid) they are not keen on standing up for the parent and mostly tell the parent to self represent.

Medical history not needed and can be cherry picked. professionals cover things up, there are many reviews that show this. How many cases do we loose like this that we don't get to hear about or like another young girl thrown out by her mother because she was not as ill as she says she was because the doctor knows best. Thrown out when 15, now in her 20s with no support bedbound not able to eat unless her kind and caring GP comes to visit. How many Doctors hide the truth.

All individual cases get lost, you put them together you get a picture of the reality, but this has been going on for decades and the numbers of ME are increasing. Sorry to go on but it would seem that no one understands or listens to the enormity or scale of the problem because no one talks about this issue, and we need to.

 

@Brian Hughes @Tom Kindlon
this is reality.
Whilst I do welcome Keith Geraghty's venture in paediatrics, I have significant concerns re the recording of recovery and the actual diagnosis ( as it is currently a dustbin diagnosis -one can see this from much paediatric research), to have confidence in the robustness of figures that can be derived.

Parents struggle to have POTS assessed yet anxiety is a common buzzword
School attendance is a bad joke (( and research has self reported outcomes for this(!))
Many kids have PTSD from their medical encounters

I have a feeling that NICE will not sacrifice CBT as IAPT is so dependent upon it

 

I'm with you on that one. Jo will know a lot more than most of us. Anyhow I think it is too late. I do think we need to know how these CFS dominated places work from those who are the most vulnerable. Forewarned is forearmed?

I did a lot of work on the scoping meeting and went to the first meeting. That was my point they missed the PE out and just put in the M. I would say this is a compromise and plays in the hands of the CFS lot as they use malaise as a sickness belief.

We need to hear the voices of those that count the most and that is the children. Their history such as all those that have grown up with ME in their lives, now 30 + and are still ill should be the ones that tell us what is needed as the guidelines are being drawn up. Keep the focus on what has happened and is still allowed to happen to our most vulnerable. Children and their parents are often willing to talk they just get brushed aside and that I feel is a big mistake.

The scribe on my table was very attentive and was shocked at the treatment our children experience. Dr Wier, Shepard and Nacul backed me up with regards to children and the severe. Many of us spoke with the same voice. Oh and men, men get a very rough deal and as I have a young son I made that point loud and clear.

 

Yes. NHS call for the guidelines and they called for safeguarding to include FII also for the Functional Neurological disorder (FND). Put the two together and you have a perfect way of protecting CBT and GET on children at least.

The role of Health and Social care Professor Viner research with Miller https://adc.bmj.com/content/89/7/61...KaqGS2ZJ5qJRVatJAeTEbSo_1ZKyyA8W3ZfCKgWtuIA40

https://www.ncbi.nlm.nih.gov/pmc/ar...Nwa6r13ExbMd-V6voDEHRbkyO43VqS82-YsU9wG7P05Eo

would suggest what ever the result we can make it fit?
Professor Russell Viner on the RCPCH https://www.rcpch.ac.uk/search?keywords=fabricating+and+inducing+illness (look at the disabled detail in there)

Read the next bit with the other information in mind and you can see how all this will fit together. Furthermore you will see our reality of how we are perceived as parents with children with ME. You would have thought Merryn would have made a difference along with Sophia?
Professor Russell Viner
Children's Services
Place children and young people at the heart of the NHS long term plan

Considering a new report stating that child health outcomes in England are poorer than its western counterparts, NHS England should develop a Children and Young People’s Health Strategy as part of its long term plan, says Professor Russell Viner

Child health outcomes in England are lagging behind our western European counterparts. This statement should come as a surprise – we are a wealthy nation with universal healthcare and have seen enormous improvements in children and young people’s health in the last century.
But progress over the past 30 years has slowed or in some cases stalled, and in 2018 our children have poorer health outcomes than those in comparable nations.
A new report by the Royal College of Paediatrics and Child Health – Child health in 2030 in England: comparisons with other wealthy countries – has used long term historical data to estimate outcomes for children and young people’s health in 2030, and concludes that – without intervention – England is likely to fall further behind other wealthy countries over the next decade.
Worrying findings
Perhaps this also comes as a surprise. Unfortunately, it is not much of a surprise at all for paediatricians.
We have seen reported mental health problems amongst children and young people increase five fold over the past 20 years. We treat the young patients who account for 5.5 million emergency department attendances each year.
And we have seen infant mortality rise in 2015 and 2016 – reversing a century of seemingly inexorable decline.
This report predicts that by 2030, infant mortality may be 140 per cent higher than in comparable countries if rates continue at their current “stall”
It is sadly not a surprise to us either that this report predicts that by 2030, infant mortality may be 140 per cent higher than in comparable countries if rates continue at their current “stall”. Reported mental health problems in England are set to increase by 63 per cent if recent trends continue.
Children and young people’s attendances at accident and emergency could increase by 50 per cent. These projections may not be surprising, but they are undoubtedly of huge concern.
Opportunity for action – NHS long term plan
This future is not inevitable. Other wealthy nations such as the Netherlands have turned around key outcomes such as infant mortality by a concerted national focus.
With NHS England’s long term plan just around the corner, we have the best chance in years to ensure that infant, children and young people are front and centre of our health services.
We were hugely encouraged by the inclusion of a Healthy Childhood and Maternity workstream within the long term plan, and by NHS England’s openness in working with charities such as ourselves. Yet the proof of the pudding will be in the eating.
Getting it right for child health today is key to improving the health of future generations to come, which is why we are calling for NHS England to develop and support the implementation of a Children and Young People’s Health Strategy, delivered by a funded transformation programme.
We all have a role to play to ensure that this report’s predictions never come to pass. We need a system where children and young people are at the centre of decision making, and their interests championed.
Commissioners must clearly evidence this routine involvement of children, young people and their parents in the design, delivery and evaluation of child health services.
We were hugely encouraged by the inclusion of a Healthy Childhood and Maternity workstream within the long term plan
Sustainability and transformation partnerships and integrated care systems must have a dedicated lead for children and young people at executive or board level responsible for delivering a children and young people’s health improvement plan in their local area.
They must take a collaborative approach to healthcare planning, working closely with children, young people and their families, as well as with other relevant sectors.
NHS England must support the roll out and evaluation of innovative, flexible multidisciplinary models for delivering integrated health services to children and young people. These models should align strongly with primary care networks and with sector wide models developed by STPs and ICS/ICPs.
A renewed focus on early childhood services is essential to help shift the NHS from a disease focused to a truly national health service, and we need to enhance health visiting services and ensuring linkage across health visiting, primary care networks and school health services.
Child health workforce
These are just some of the recommendations that need to be implemented to ensure a brighter future of our children and young people. However, they will be hugely difficult to achieve without a significant expansion in the child health workforce.
We want to see NHS England work closely with Health Education England to model the future children’s health workforce within the best models of care. This must include setting the workforce need for medical, midwifery and nursing staff, as well as allied health professionals, pharmacists, health visitors and school nurses and youth services.
We must think outside the box to tackle our workforce issues, considering new models such as child wellbeing workers in early childhood settings, primary care and schools. We also need a paediatric physician’s associate workforce to help plug current gaps – and welcome the recent announcement of regulation of the PA workforce.
We want to see NHS England work closely with Health Education England to model the future children’s health workforce within the best models of care
Hundred years ago, one in six babies in this country did not live to see their first birthday. Thankfully, due to huge scientific advancement and our incredible NHS, we have consigned these terrible outcomes to the past.
Yet without prioritising and investing in child health now, we risk condemning today’s children to increasingly unhealthier futures than their European counterparts.
We must all work together to transform the life chances of infants, children and young people in England, starting this year with an NHS long term plan that prioritises and champions their needs.
Professor Russell VinerProfessor Russell Viner is president of the Royal College of Paediatrics and Child Health and author of the report Child health in 2030 in England: comparisons with other wealthy countries.

Comment
Catering to children with ongoing health needs
30 March 2018
Improving communication, collaboration and continuity of care would ensure that children are seen in the right place by the right person at the right time

 

I just wanted to post this here as I think this will become important with the new guidelines. As the minister in the debate it is the Royal colleges that call the shots for education and I think they are paying for the guidelines to be updated. New guidelines for Medically Unexplained. What research are they accepting for the ME Guidelines?
https://paedmhassoc.files.wordpress.com/2018/12/mus-guide-with-leaflet-nov-2018.pdf

 

worth getting feedback from Coyne on this document?