COV-19 Autism and Fraility Score

(quote from NICE article March 25th 2020)

”Patient groups and representatives were concerned that applying the score to people with learning disabilities, autism and other stable long-term disabilities, would put them at a disadvantage when decisions were made about admission to critical care in this time of intense pressure. 

The NHS Specialist Clinical Frailty Network has since updated their advice on using the CFS, stating that it should not be used in isolation to direct clinical decision making and that clinicians should take any decisions about care in conjunction with patients and their carers where possible. 

The new advice also includes a clarification that the tool should not be used in certain groups, including those with learning disabilities or with stable long-term disabilities such as cerebral palsy.

NICE has now (25 March) updated the rapid COVID-19 critical care guideline to reflect these clarifications and to emphasise the need to consider additional patient factors when interpreting the CFS score.”

26 March 2020

An urgent open letter to U.K. mortgage providers during the Coronavirus Pandemic

An urgent open letter to U.K. mortgage providers during the Coronavirus Pandemic . 


Coronavirus has hit us all hard here in the U.K. ,physically ,mental and for the majority of us financially.


As a a self employed advocate who works to safeguard the most vulnerable in society it’s a frustrating time ,the  dread of self isolation meaning I cannot safety provide the volunteer work I do to safeguard the Autistic adults and youths  I have a  duty of care to


I am pleading with you to step in and help me help others throughout the U.K. 


It’s times  like these where the UKs most vulnerable become the clear canaries in the coal mine . Everyone is affected  ,But they are affected harder and faster . 


Many of the Autistic adults and indeed non autistic adults I support have experienced ongoing financial abuse 


Many parents  I see on either a low to no paid  capacity simply because they have their savings ,home or mortgage tied up by an ex spouse who no longer pays towards these financial ties , but in exactly the way coercion works , ex spouse also refuses consent to cut such ties and free the other  of their financial connections to them. 


When our prime minister announced a  3 month mortgage holiday for  home owners my leap of happiness and  relief and was quickly met with sober  knowledge this would  not be easily achieved for single parent’s paying a  full mortgage that was historically taken out  as a joint application. 


This would hard hit  single parents ,Carers of disabled children , Autistic  adults who’ve escaped a controlling relationship ,those who struggle at interviews so have burned the candle at both ends to become successfully self employed and now workless in  a Pandemic, despite being driven to work hard to pay their way , are now trapped . 


Trapped because  even if you’ve  been the sole payee of your mortgage for 1,5,10,15 years whilst your ex spouse hasn’t have to ask consent from the joint mortgage name who isn’t contributing to obtain a mortgage holiday . 


Even a government imposed one . 


I plea with all U.K. mortgage providers to help by doing the following .


1) Explaining Economic abuse is both painful and triggering . Should a customer explain they are a victim of such activity TAKE  EXTENSIVE NOTES and discuss these notes with whoever you need to  pass the customer onto  whilst they are on hold ,to save them retelling the story .


2) Make  your “triage “ number for exceptional cases public during the Pandemic  ,saving the customer having to explain the situation only to be tiered up to supervision and manager level . 


3) If a customer has a court order to show in relation to the claim ,or the land registry is in their sole name , this is an exceptional case that requires exceptional circumstances and no joint name consent should be sought . 


4) Historic mortgage payments are clearly stored on Mortgage statements, if a payment hasn’t been made by the ex spouse ,but has been paid in full by the applicant asking for a mortgage holiday you will have evidence that this is an authentic request .If the non paying party of joint application would have lost their home due to non payment I the time frame they refused to contribute ?,why ask their consent ? 


5) Refer to the Financial Abuse code of practice that many U.K. banks and buildings society’s have signed up to ,and abide by its phenomenal guidelines .


A home never becomes more important than in times of being housebound ,a home never becomes more vulnerable in these times too .


Thank you 


Carly Jones MBE FRSA

25 March 2020

National autistic society professionals Awards Host

04 March 2020

Recognised As One Of UKs Top Female Entrepreneurs 2020 House Of Lords

04 March 2020

Fellow Invitation For RSA

27 February 2020

Spectrum Live Gets Record Breaking Viewing Figures

25 January 2020

Artifical Intelligence And autism -Autistica summit Alan Turing institute London

18 October 2019

Joining Heathrow Accessibility Advisory group

Over the moon to be invited by Flying Disabled to join the Heathrow Accessibility Advisory Group to lend an Autistic perspective to flying and Airport Accessibility.

I am delighted to accept this kind invitation and hope to prove myself a hardworking and worthy advisor with strategies and ideas that really take off! *

*Pun absolutely intended

01 October 2019

POST Note October 2019

24 September 2019

As i Am Conference Dublin

24 September 2019

Population Reference Bureau Washington DC

It was a privilege to be invited to add testimony of the unique challenges faced by Autistic women and girls and safeguarding by the Population Reference Bureau.

The Population Reference Bureau Washington DC Is developing a multimedia “road map” presenting on How to better recognise the sexual health rights and needs of disabled women and youths and how to better respond to Sexual violence against disabled women and youths .

28 August 2019

Paperless Loans,Fintech and Economic Abuse

Casting a wider net from just Autism specific advocacy is always a great challenge however I feel that by using the Autistic perspective and experiences ,I hope I can then find loopholes to help many people in the UK lead happier and safer lives .It was due to my advocacy work with online safety and economic abuse that it has come to my attention that there may be a loophole in protecting vulnerable men and women from financial abuse .

Due to the photographic driving licence being an acceptable form of identification and proof of residence for many paperless online loan companies and banks there is a grey area .

It is possible for a perpetrator of financial abuse to fraudulently use a drivers licence in ex partners address for up to 10 years after leaving a shared property due to the DVLA not being able to remove an address ; only able to block an address at time of next renewal date (up to 10 years ) 

What can we do to close this gap ?

Can we warn paperless loan providers of this loophole ? 

Can we advertise to ex spouses to contact DVLA as soon as partner leaves shared home just as they would for council tax and tax credit purposes? 

Can we “freeze “ the ability to use photo licence when DVLA informed its being used incorrectly? 

Should there be higher penalties for those who use addresses fraudulently ? 

Can we make a photograph drivers licence renewal more regular? 

Could addresses be removed completely? 

I have attached a link to my article in the Financial Times in this subject here ,

10 July 2019

Rt Hon Peter Riddell CBE and Diverity In Public Appointments Films

10 July 2019

Making Commonwealth Wide Commitments In New York New York !

In early June ,Include me too representatives and ambassadors attended the United Nations NYC state parties event for Disability where we launched the Commonwealth Children’s Youth Disability Network .

10 July 2019

Commonwealth Day Service Westminster Abbey 2019

12 March 2019

Appointment To UK Honours Committee

It is with incredible pride that after a accessible interview process I have been appointed to the UK Honours committee in the capacity of Community and Voluntary services (CVS) member.

I am to serve a minimum of 3 years ,with a possible extension of 6 years .

I would like to thank the Cabinet Office for being so inclusive and forward thinking in selecting an Autistic adult to become a committee member. I will do my upmost to serve well .

Here's to reading all about what's great about the UK and making sure more and more diverse people doing selfless things for others in the UK are recognised.

15 January 2019

Disabled Youth Commonwealth Roundtable At House Of Lords With Lord Holmes Of Richmond Baroness Uddin and Parmi Dhensa CEO Of Include Me Too

31 May 2018

House of Lords Secretary Of State National Autism Education Strategy

15 February 2018

The Honour Of An MBE

29/12/2017 22:30pm MBE Statement.

To receive an MBE from our Majesty the Queen in the 2018 New year's Honours is a feeling which I am yet to be able to put into words , I am not sure I can explain with justice how exciting this recognition is to not only on a personal level but far more importantly to others that I endeavour to support as this sets firmly and publically the knowledge that as British Autistics we are valued , we are recognised and we are able . I hope , that as not only a parent of Autistic young women but also be an Autistic woman myself ,my MBE sends out a clear message that regardless of our challenges and differences , have something to offer our country of tremendous value .

We are just as able to achieve and just as likely to be recognised for our talents ,long term hard work , and hands on efforts Collectively, we have come so far in the last decade with not only our awareness of Autism as a whole but in particular the subject close to my heart of women and girls .

I hope my MBE stands as an example to professionals working with Autistic mother's that we have empathy ,make selfless acts and valuable contributions to their communities and own families .

I hope more adult women feel less afraid to disclose their Autism to friends , colleagues and families so they can find other Autistic women and feel less isolation .

I hope any young girl recently diagnosed or on the diagnosis pathway will read about this MBE and feel empowered by their diagnosis, not ashamed, as they grow to enjoy all the knowledge, safeguarding and understanding that being Autistic in the UK in 2018 and beyond has to offer. You are limitless.

Thank you my daughter's Chloe ,Honey and Cherish for the quiet sacrifices they have made either in our family time , our family finances ,or our family confidentiality, in order to support the cause of Autism and girls, for most, if not all of their own childhoods , with full understanding ,yet without question nor resentment. You're spectacular, selfless, young women.

Heartfelt thanks to my parents Adrian and Cathy Jones for their ,daily , unconditional support, patience and understanding .

Thank you for the charities and organisations that I support and who have supported me in recent years, Scope ,SWAN, Autism Berkshire,Parenting Special Children, ,Include me too ,South Hill Park , RISC , BBC Three , Channel 4 ,Network Autism ,BBC Class Act ,Thames Valley Police , Ann Memmott Independent Autism consultant ,Bracknell Forest Council and course the National Autistic society , in particular Dr Judith Gould of the Lorna Wing Centre for seeing my Autistic challenges and strengths ,in the way only she can and officially diagnosing me at 32, which put my life back on course.

I'd like to be so bold as to extend my sincere gratitude to our Majesty the Queen and Prime minister for such a humbling honour. Which I will learn to make good use of ,in order to benefit many others in the UK.

Although this truly marks how far we have come in last ten years of Autism and girls awareness work ,we still have further to go and also signals quite timely, a starting point of ambitious nationwide, "pocket free" Autism equality , equality of diagnosis regardless of ones financial situation or gender identity, equality in education , employment and more ,so British Autistics can be open without fear of stigma, about their Autism and have no barriers to sharing our often vastly underestimated skills ,talents ,knowledge and experiences to the greater benefit our not only our own quality of life but also the whole country, which we are an essential part of.

I am grateful to be raising my daughter's ,2 of 3 whom are also Autistic ,here in the UK ,and I wouldn't change being born British and being born Autistic for the entire world, in fact , I don't think I'd be an MBE if it wasn't for my Autism, as being Autistic has helped me be vastly passionate and committed to one cause for a very long time , which is from today, now cemented as my lifelong commitment and duty.

I dedicate my MBE to the Autistic community old and young ,who, despite having experienced misunderstanding and unkindness remain understanding and kind . I so wish my granddad Stan could have seen this .

Happy 2018 and "Autistic Girl Power "always ,

Carly Jones MBE

15 February 2018