From a inbweener moving boarders England to Wales and lost in a outdated system!
More lived experiences:
📄 EDUCATION & FACTS: FALLING THROUGH THE CRACKS IN WALES
One Year On – A System That Is Failing but like a case study moved April last year to Wales!
📝 ABOUT ME
I am a woman in my 50s. I have Autism and a Mild Learning Disability.
My IQ is 72. This puts me in the “in-between” place. I have many health problems including joint pain, back problems, stomach issues, and I use a wheelchair because of my spine.
I moved from England to Wales one year ago. I thought my help and care would continue. Instead, all the support stopped. The system here feels old and does not understand me. I included well known links and all these links inportant to my case. You may use it but not my name! I no I not alone! I doing this because if I can not change the system I may just be a Oliver or Paul and family can make sure and charities like you aware for future people. Keeps me going with what I can to fight for peoples rights too! For whole of UK too!
1. HOW LONG I MIGHT LIVE – A MATTER OF LIFE AND DEATH
Being in my mid 50s, I have already done well to reach this age.
– Family History: Many people in my family died young, between ages 40 and 62.
– The Facts: Research shows that women with autism and a learning disability often do not live as long. On average, they live to 69.6 years old. This means I might not have much time left. To get this out there!
– The Risk: Without the right help, I will not live as long. I want to live my life well, but I cannot do it alone.
Source – Premature death of autistic people in the UK investigated for the first time | UCL News – UCL – University College London https://share.google/58oYS0wEkEOlCpPX5
2. THE IQ NUMBER – WHY IT IS NOT FAIR
– In England: An IQ between 70 and 75 is accepted as a mild learning disability. You get help and health checks. They understand autism there. For me after ment medical emergency and operations!
– In Wales: They say you must have an IQ of exactly 70 or less.
Because I have 72, they say “No Help”. But I struggle with:
– Reading, writing, numbers and time
– Planning my day and organising things
– I have very bad dyslexia, including visual dyslexia. Words move around and I get confused easily.
Proof I need help:
– Since I was 8 years old, I have been supported by Mencap and went to special schools and classes (SEN).
– Even as a small child, playgroup could not cope with me.
– I left school without qualifications. I tried college again but could not learn more.
– I drove a car for many years! This shows a label does not mean you cannot do things. Old papers used to say “people with learning disabilities cannot drive” ( this came up in my careplan last year here) – but that is wrong! People with Down syndrome can pass their driving test now. And mencap I seen some eles did more recently.
The Truth:
A number does not measure a whole person. Tests were done years ago and did not understand my anxiety or autism. In England, they saw I needed support to raise my children.
My Campaign Work:
I am part of an influence group in England with 7 people. All of us have IQs up to 75. Why?
Source – We work together to show that people in this range have real needs and deserve support.
Defining learning disability | BPS https://share.google/s8gDwJtm0Suj0yuuo
In Wales:
Even services like Mencap here use a cut-off point. They leave people like me behind. This is wrong.
The Law Says:
Support should be based on “Substantial Need” – what I cannot do – not just a number on a piece of paper.
Source:
– https://dspd.utah.gov/eligibility/
3. PERSONALITY DISORDER VS AUTISM – THE BIG MISTAKE
When I was younger, doctors said I had “Personality Disorder”. They gave me strong medicine which hurt my stomach.
NOW WE KNOW: This was wrong. It was Autism all along.
The Facts:
– Autism is something you are born with. It starts in childhood.
– Personality Disorder is often about how life experiences have affected you.
– In the 1970s and 80s, they did not understand autism in girls and women. They saw my behaviour – being quiet, finding friends hard, meltdown tantrums and so on getting upset easily – and called it “personality problems”. And highly strong or highly strun. Not altered pain preseption.
– Many women get diagnosed with autism much later in life because of this mistake.
– My behaviour growing up was classic autism, but no one saw it then.
Source:
– https://cambridgeadhdclinic.com/adult-autism-delayed-missed-diagnosis/
4. MY LIFE IN LEICESTER – HOW IT SHOULD BE DONE
I lived in Leicester for many years. The system there worked. It shows what is possible.
– Specialist Autism Team: They did not use words like “Neurodiversity” to hide things. They focused purely on Autism and how to support it. They understood it is a way of being, not a mental health problem.
– Liaison Nurses: There were nurses who worked between GPs, hospitals and social care. They made sure everyone knew my needs.
– Annual Health Checks: Leicester is one of the best places in England for health checks. They make sure people like me get checked every year so problems are found early.
– “MAM” Meetings: We had meetings where everyone came together. This included my support worker, advocate, family, social workers and health team. We talked about “What Matters to Me” and made a plan together.
– Crisis Text Chat: There is a service you used where you can text for help. Adults can refer themselves. It is open for people aged 14+ and parents too. As long as you have a diagnosis, they understand and help you. Has it’s not a crisis line!
Source:
-Olivers campaign used in England The Oliver McGowan Mandatory Training on Learning Disability and Autism | NHS England | Workforce, training and education https://share.google/TxIZvnUvIoFv0HhJk
– https://youtu.be/maWWYt5bGI8?si=FNNA6uFQyV9r3zlF https://www.leicspart.nhs.uk/service/specialist-autism-team/
I fell under Oliver’s training I did 2023 I fell filling in it and more support in support at home and I went on the learning disability register.
5. PAUL RIDD FOUNDATION – USED IN WALES
Paul Ridd was a young man and a learning disability. His story is very important and his training is now used in Wales.
– He became very unwell with stomach problems and constipation.
– Because he could not say “I am in pain” in the way others do, doctors missed how sick he was.
– Sadly, Paul died because his needs were not understood.
Paul Ridd Foundation was set up to make sure this never happens again. They teach staff in Wales:
– People with learning disabilities feel pain differently.
– That constipation and stomach problems are very serious and can kill if not treated.
– That we must look for signs, not just wait for someone to tell us they hurt.
This is official training in Wales now! All NHS staff should know about Paul’s story.
Linking to my story:
This is exactly why I am so worried. I have the same altered pain perception. I have severe constipation and digestive problems. If Wales does not follow their own training, the same thing could happen to me. People like me who are autistic can be pushed away you don’t look in pain!
Source:
– https://paulriddfoundation.org/
12. SOCIAL SERVICES – BREAKING THE LAW
There are laws to protect me.
– In England: The Care Act 2014 says they must put my wellbeing first. They must look at what I need and give support.
– In Wales: The Social Services and Well-being (Wales) Act 2014 says the same thing! It says needs must be met regardless of labels.
– Equality Act 2010: This applies to the whole UK. It says services must make Reasonable Adjustments so I can use them just like anyone else.
– Human Rights Act 1998: I have the right to life, right to be free from harm, and right to respect and dignity.
But this is not happening:
– They think they can “train” me at 50+ years old to be someone I am not.
– They expect me to live independently when I am in a wheelchair and have so many health problems.
– Assessments take months or years.
– They write reports about me without even showing me what they wrote.
– They say “Let’s teach her to be independent” but I have needed help all my life!
– They say I “can do more” but ignore the doctors’ letters.
– They want me to pay for an alarm button, but it should be free if I am at risk of falling.
The Result:
– No help with cleaning, cooking, or shopping.
– My health is getting worse fast.
– I am exhausted and burntout more than ever not mentally ill. I sleep late because fighting the system is too hard.
Source:
– https://www.legislation.gov.uk/id/anaw/2014/4/section/19
– https://www.legislation.gov.uk/cy/ukpga/2010/15/schedule/2/data.pdf
13. HOSPITAL & A&E – I AM SCARED TO GO
I am terrified to go to hospital now.
– It is too busy and loud. It hurts my senses.
– Staff do not understand autism or altered pain.
– They call me “argumentative” or “mental health words use my persality diagnosis and certainly overshadowing the real issues ” when I am just trying to ask for help.
– They look at old notes saying “Personality Disorder” and ignore my autism and pain.
– I often leave early just to get away from the stress.
This is dangerous. People are waiting too long in Wales. I should be on the Learning Disability Register so they check my health properly, but they won’t add me because of my IQ number.
📢 CONCLUSION
In Leicester / England I had:
✅ Support workers who understood and my rights to choose
✅ Liaison Nurses who helped in hospital and digital flags
✅ Annual Health Checks
✅ Team meetings where everyone worked together
✅ Crisis support when I needed it
✅ People who looked at my needs, not just a number
In Wales I have:
❌ NOTHING
The system is broken in Wales and learn from England so there’s no inbtweeners. They use numbers and big words to avoid helping people like me. I am getting sicker and weaker.
The system is broken in Wales and learn from England so there’s no inbtweeners. They use numbers and big words to avoid helping people like me. I am getting sicker and weaker. I just need my life back. It’s been a year another year and I be physically worse. If I die here in Wales, I’ll be another statistic like Oliver and Paul. What will it take for wale to update their policies?
I need my story out there without a name and I do not know how I have tried I have got nowhere. I just cannot think outside the box!
My new health conditions in Wales: fatty liver fatty pancreas and higher cholesterol than I’ve ever had because I cannot eat the foods are healthy boiled and to my sensory needs! So I’ll just survive in on what I would have survived on in my 10 days chips nuggets take out sandwiches and microwave rubbish food. So none of this is going to get better. Recently I’ve just found out that I have cataracts so driving is not possible anymore, to be able to undergo that under a reasonable adjustment I would most certainly need an anaesthetic are both eyes doing at the same time. But there was prepared to do any of this or have cameras up and down with high sedative to help me forget about what they’ve done. My GPS tried to educate the social services this year but it seems to be a fail because they have all my GP notes they have everything they need so that no more assumptions could have been made even the district nurses they know I don’t like touch and invasive procedures the backup of bow and my fatty liver and patty pancras and my blood’s be until was the only things that was found because I have pins and Staples in my stomach it makes it hard to see the rest of the stuff what’s going on so a camera down and a camera up his most important that one of the gynecologists were even put a camera down unless I have support at home or at the hospital. So I’m going to land out with getting nothing treated and I was outcome.
Reason of mencap o both mancaps in England am Wales is the fact that both of you will have the facts for Wales and England.
I have sent this off to my advocates too and they fully understand but at the end of their day it’s down to social Services everything seems to be down to social Services my GPS made all the reasonable adjustments within the surgery quiet space receptions staff being kind to me and give me that extra time. And the same GP has a switch there appointments around if it’s an emergency or my main GP sees me every month. But there’s not a lot more they can do I did fill out the learning disability paperwork for my GP the social services seems to have more control over whether I get support in hospital or get onto the learning disability register they seem to decide everything here. I may be even overall in what the doctor said about my past history. And all the medical emergency I’ve had throughout my life my first one being at 18 I had gallstones a social worker told me I was more like an older sister to my children that are real mother so I needed a lot of support to raise them but I did keep them there. I have many friends in England that are supported to keep their own children in some circumstances. My mum was my rock. Having to fen for myself that I’ve never done my whole life for the first time and to be fair I’m not coping rubbish is building up I got bugs in the house obviously not eating decent meals to keep myself healthy because I can’t I used to have a lot of prompt and assist when I wasn’t in a wheelchair but I suffer from degenerative bank conditions and I can’t actually walked just transfer now so my life is harder than the ever was I still like to how but I just need some help to do it I could hold a bag they can put rubbish in and on most certainly entitled to go out a lot more than I have been doing because I pay four hours support out of all my pip and what’s left over from my power chair that gets me around my local area to my GP or local clinics. My GP did tell the ambulance man so I got the hospital transport but the last time I went it all failed because I took me without my wheelchair and half dressed that was the only time a liaison nurse came down to how I did get the clothes and I did get a trolley but that was the day that’s been all over the news people dying in corridor and a poor dementia patients wandering around with no support at all and get and told off by the nurses and they can’t help it I don’t understand right now my mind is very confused it’s been such a use change to me. If I don’t get the support I’ve definitely not gonna survive in Wales because of my health leads or as I could do is fight for people’s future and this is why I’ve written this to you so you’re aware of it too.
Feel free to email me back if you have any ideas or what I could say or do to get the right support. I know there’s a lot of easy read online but this is very very different because the system is broken we know that not just for me but for all you staff that work at maincup for your families for your parents for outlets for grandparents I get that the NHS system is broken here that the fact is people with additional needs needs of support and I don’t receive in it as they should especially for myself moving borders with a mild learning disability like Oliver did the young man had a whole life ahead of him he was just a lot younger than me he had capacities to say do not give me psychotic drugs and his epilepsy was getting worse and it needed treating not being treated for a mental health condition and it was those psychotic meds that swelled his brain up and he died. Life can be so sad without the right support and the right people helping me fight my rights even at my age.
If you get to the end of this email I really thank you for reading it and I hope that you can both fully understand England mencap and Wales mencap.
Because I will keep sharing my story and sharing it out publicly as I can so things can change and things can’t be updated. They say you meet one person on the autistic spectrum you really meet one some have a mild and a disability dates substantial support just as those with an under 70 IQ. And then you get people that have very high IQs that doesn’t really need any support and they enjoy life they’ve got good jobs and they get on with it. But for me being an inbetweener as I say I’ve landed up with nothing moving borders to Wales where the system is well outdated.
Oliver and Paul both of these should be used in training in Wales and they’d understand more about an autistic person that needs because considerable amount of help in the NHS and within the social care system as support needs at home who wants to stay independent as long as possible.
I’ve never known anybody to have an IQ test as an adult I’d be tested on one question then you do that jigsorbit took me ages to get into it then they talk about me raising my children and drive in and decide that that’s where they’ll put me this was actually done in Wales as I fleed my ex husband who had profound needs and mental health difficulties my children no longer see them and they’re all grown up my whole children have their own additional needs including one grandchild my daughter has ADHD and my two boys have autism one of my boys live here and he’s only just 25 but there is actually living in his life to the full even though he came out of school with a learning disability but he likes it in Wales because he can live more independently than me and it is different groups and is even considering working for the council and working within those groups which I’m so proud of him my other son he has a lot of support and health needs and he’s my very youngest a different dad rare situation so as to your even have him so he’s coming up now to 40 and he’s just had his camera up and down and he’s had to have some biopsis as well but he lives in England. My daughter does very well she’s quite high independence has two children one moved to lutherania as it’s a little better healthcare system out there with his dad and my granddaughter stays with my daughter and she has ADHD she was on rain still she was seven there was treated a lot better than I was back in the 70s and 80s the me and my boys got left behind and my boys was late I diagnosed as well.
When I try to explain things I can over explain to the national Autistic society as plenty on their website about that and you can see that I’m being argumentative but all I’m actually doing is trying to stay facts I want facts out of my medical records and it’s perceived as being argumentative or a mental health condition which is clearly not is kind of like a stem for me because I would just go on and on and on and change the subject and go back to past history or something a set of keeping on the topic at hand but this is how social services treat me but a lot of the other services listen to me rabbit on as they say and they’re really trying to help support me even some of the ms’s out here in Wales the members of parliament people that are local here in England they’re called MPs. I will touch you a letter as well that one of the MPs now who is retired while MS mark issuerwood a letter to Jeremy about digital flags a d agrees would be very useful here. As I have noticed that my GP has flagged something up because the 999 call the person on the other end can actually see that I have a flag it’s a type of flag that when you get to the hospital or as I have is a health passport so recept from receptionist to the nurses to the doctors they sometimes don’t read it past there yet it has almost summers on communication difficulties older pain perception sensory to touch although the needs like no jargon and stuff so I don’t understand any of it because I weren’t allow them to touch me in certain places and perceived as awkward and Wales but how can you change that it’s something inside of me I could say yeah I’ve got pain in my belly or in my hair but I’m not sure which I did do ones and it was somebody that says give her a proper scan and see if it is a repentance I have one and there was ready to burst now they had a burst and nobody had done that you could have got infected and I could have lost my life years ago you see there’s loads of stuff like that including my gold stones that I had that was misinterpreted at some point and then I found out that I needed my whole gallbladder out at 18 years old and I had loads of gastric issues about them and later they found Hattie as hernia and other hernias and one entangled one I’ve got the pins and Staples inside old in it together because the mesh never kept it in and now these execute conditions on top you can see how scared I am I’m trying to fight the system so I can have a bit of life left in me and to also keep my dignity because I don’t like hands on care yet when I do I think they’ll be giving me a lot of mental health pills because I’m going to be an awkward one because I’m not going to like the sensory touch to be fair so we found out my mum was autistic as well and she loved it with a strange Alzheimer’s profile she wouldn’t hurt me that she would hurt nurses in the hand I had to put her into a care home but I had no choice that was sad and I was there and I watched a die that’s how I knew that lady that was shouting out was pretty much on Ender life and I witness that I in the hospital and my last day and eat trip if I have to go there on my own again I don’t think I will or if you leave my bed because it’s traumatising and it’s not right I feel like I’m going to die alone just like that lady I watched I get him told off it shouting help all the time she wasn’t very well and then the other lady walking around with dementia have no support either I get that the NHS is in crisis here big crisis that reasonably adjustments should be also noticed.
Kereena.
autismawarenessgapslivedexperience 
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