Posted in EHCP Process

Announcement

I have been sat on something for quite some time now but have been cautious about making it public knowledge until the right time, but I think now is that time, time to let the proverbial cat out of the bag 🐈

I have been a little Jekyll and Hyde in posts about mainstream schools, those that have been around since the beginning; since before ‘Our journey onto the Spectrum’ was a thing and it was just simply our life, will remember how adamant I was that William was would get the education he needed, the education he deserves. Somewhere over the last year, what was right for William got turned around and it because what was right for the Local Authority.

Pressure was put upon me to name mainstream schools, with phrases such as
‘by law you have to name mainstream schools for allocations…’
I can categorically state this is absolute bullshit! But when the forms came through, I felt forced to do so, I felt manipulated and bullied into making a decision that I new deep down was not correct for my child.

The crushing disappointment that came on February 15th when William was left of the consideration list for special school places almost tipped me over the edge mentally and knocked the little bit of fight out of me that I had left. I remember saying to Debs that I just couldn’t fight anymore, and she told me I was only just starting… she is usually right always right but I just felt so deflated that I wasn’t ready to admit that to myself. If we think back to that time; I kind of had a lot of other things going on in my personal life. Breakdown of marriage, adjusting to being on my own, juggling my finances and not being able to see my family due to covid. I think I was at a stage in which if the Local Authority told me to have William educated in the local dump, that I would have agreed.

Williams EHCP draft was completed on 29th April, but I didn’t get it until 6th May, I filled out my parental response form naming the mainstream school I had chosen and in which myself, the nursery and the Local Authority Senco had all liaised with shortly before.
The head teacher couldn’t confirm they could meet Williams needs without the EHCP but I was expected to name them for the final copy without this confirmation… I felt I had no choice, so I named them and was ready to post it and I am so grateful I didn’t do it straight away.

On the 7th May, I got my fight back with help from the most amazing woman, a woman who has never stopped fighting for what is right for her child. A woman who helped me kick myself up the arse and point me in the right directions about my rights. K❤ If it wasn’t for her, I wouldn’t have sought legal advice, which I have been given free of charge thanks to the specialists she pointed my in the direction to… I have since been awarded legal aid and its not even something I would have looked into if not for her.
I tip-exed out my school of choice and wrote that I specifically wanted a specialist school and named one in which I feel and have always felt would be appropriate for the education of my child, one in which can without a doubt give my child the education he needs and deserves. I sealed it and sent it straight away. ✉ Had it have been 24 hours later I would have made the biggest mistake of my life (and believe me, I have made a few… divorce impeding remember 🙄

I think friendship and support comes from the most random and unlikely places but when your children have special needs, you just see each other and think ‘I’ve got you’
There are so many people in my life that have supported us in this journey purely because they understand and  have been there themselves.

The Local Authority doesn’t tell you what you need or are entitled to, the don’t point you in the right direction for your children, they point you in the direction which is the best for them. It’s the other parents that do that, the parents that fought a little harder than we did, the parents who scraped and struggled for help and answers. They then pass that down to us.

The NHS isn’t much better, purely because the communication between departments is virtually non-existent when it come to special needs kids so not only are you fighting one entity such as the local authority but also the NHS and its procedures and policies. I am a huge fan of the NHS and the Queen has rightly awarded them with the George Cross, which is the highest award bestowed by the British government “for acts of the greatest heroism or for most conspicuous courage in circumstance of extreme danger” and the NHS truly deserve it due to all they have done to save lives not only during the Covid-19 pandemic but for the last 73 years.

I saw this a while ago and thought it summed everything up perfectly…

Other parents came into my hole to help me, and I will happily climb into the next person’s hole because that is how this works.

Anyway, I digressed a little from the point, should the Local Authority fail to provide William with an acceptable school setting which will meet all his needs, baring in mind this has to be done by the time the send me the final copy of the EHCP, then I am fully ready to take them to a tribunal. It looks like it may be a big fight 🥊 but I’m ready this time.

Let’s end this post on something amazing.
This is something I never thought I would be able to tell people, William spoke… and in true William fashion; just like all his other firsts, it was at Big Nannas 🥰

He said ‘Nanna’ in context, six times!!! Six whole times!!! and the following day did it again when going passed her street. These may be complete flukes and I don’t want to build massive hopes upon it, but it is so much more than I ever expected. I mean Mama would have been even better but beggars can’t be choosers 🤣

All my love, M xx

Posted in Autism In The News

Olga Freeman

I want to talk about Olga Freeman, I’m not sure if some of you will have already heard about Olga as she has been in the papers over the months, after she committed an atrocious act and murdered her autistic son after her support was taken away during the pandemic. I do not want to discuss the murder, but I want to discuss her mental health during this pandemic and not just hers but all of ours.

I cannot understand how anyone can do something so heinous, but I can understand the feelings she may have had during this pandemic and I think any parent of a child with special needs can too, in fact any parent at all…

That overwhelming sense of slowly drowning; of not knowing how you could possibly keep your head above water but in many parents’ cases we know we must, so most of us learn how to swim no matter the waters.

Lockdown has been hard for many parents, but I speak from experience when I say that it has been exceptionally hard for those with special needs kids, support was completely stripped, nurseries and schools were closed, activities and respite were stopped, appointments postponed so many times they became a mere memory and people were restricted from seeing loved ones who act as a huge support network.

I am incredibly lucky that when I became a single parent back in October, the support came in strong from unexpected places. I was suddenly in need of a support bubble and it came in the shape of my neighbours who have massively stepped up for me in a way most would not have. It came in phone calls from friends just checking to see if we needed anything and were ok. It came in doorstep drop offs from family members.

Olga did not have that, what she did have were doctors agreeing that she needed more support but the local authority failing to provide it… She knew she was struggling and actively sought help in the month prior to killing her son. I speak for many parents now when I say that local authorities are notoriously slow at providing support, if any…

Olga suffered a severe mental breakdown which led her to take the life of her son. I suppose my point of this post is to implore you all to check on your neighbours, friends and family who may be struggling but hiding it well. I’m not saying that everyone is capable of such a horrendous act, but everyone is capable of reaching breaking point.

Posted in EHCP Process

Moderating in time

Today was the day in which I should have had an update about Williams EHCP, I should have been able to figure out what the next steps are going to be for Williams education and find out if that slim chance of a special school allocation was within our grasp.

However today was not that day. No days are the days they should be and I an beginning to learn this… I need to prepare myself for these things as they happen all the time and yet continue to knock me for six. As parents we shouldn’t be continuously let down by those who are supposed to support our children and adhere to timescales laid out by themselves.

The EHCP has not gone to the moderators… Still! This is because the medical report needed and the Speech and language report have still not been received. These should have been submitted by 15th of February and its now 4th March 🙄😡

So now we are back in the waiting game… Next week or the one after. Who even knows?!

Posted in Appointments

Hello

Its a Monday and when I was office based it used to be my favourite day of the week but not anymore, today feel like the most Monday-ist Monday ever! In the words of that Geldof prick and school shooter Brenda Spencer… ‘I don’t like Mondays.’

Today me got to meet our new health visitor; Louise. we all know how much we rated Sarah so she does have a lot to live up to. Louise has been the health visitor for our area for 15 years which is a long time for a health visitor to remain in the profession.

She turned up in full PPE as you would expect in todays current climate, Mask, goggles, gloves and full length plastic apron. Brilliant first impression… the neighbours must think we either stink or are getting fumigated 🦨🤣

She introduced herself and immediately jumped into questions about William, I must say the sceptic in me immediately though she hadn’t read his notes but she was also referring to him and wanted a thorough picture for herself of his capabilities and behaviours.

She confirmed she will be attending next Mondays meeting about his EHCP just like Sarah used to despite not receiving the official invitation.

Before I could even ask her about the Nappy Service she told me she had looked into our request and there was no leeway with him being under four, again this impressed me that she had looked into things that we had hit brick walls with without having to be asked. This one was on my little things I had written down during the months I was unable to speak with Sarah.

She has decided to put us through to a sleep specialist to help us hopefully get William to sleep easier and keep him asleep, this will involve lots of assessments and advice before potentially leading to medication such as melatonin.
Melatonin will help most kids fall to sleep but not all… The problem is some parents believe it will help a child who is procrastinating going to bed, stop a child waking up early or having nightmares but that isn’t the case. Melatonin is usually a natural hormone that our brains release in order to help us fall to sleep. Melatonin supplements are available easily online but they are NOT regulated and may do more harm than good. If you are considering Melatonin please ensure you speak to a professional before buying something that you cant be 100% sure of what’s in it. There are concerns that because melatonin is a hormone that it may effect your child’s development when they hit puberty and it is something we will need to consider deeply if we reach that stage.

I asked her to refer us to Wheelchair services so we can get a specialised buggy but she wasn’t sure if she was able to do so. she said she would be in touch about it and… within 2 hours of her leaving our house she was on the phone advising us of who we need to speak to as only two organisations can make that referral, Occupational health and Physiotherapy but William doesn’t need any of these 😕 Its not that he can’t walk. Far from it. Its when he does walk he will drop to the floor in a floppy state no matter where he is including roads, its the fact he has no danger awareness and a buggy at times he goes floppy or has a meltdown would prevent him from getting hurt. I’ve lost count of the amount of time Dave has had to stop cars because or child is laid in the street. 🚗 we have spoken to our G.P surgery and have a telephone consultation booked next week for the doctor to decide if its appropriate for him to refer us 🙄

I’m not sure if we mentioned the questionnaires that are sent out prior to a child’s development check up but they have always been brutal to us. They focus on what children should be doing for their age group and as we are all aware William isn’t at his age group so it was a lot of negatives for us. These are called the Ages & stages questionnaires and unless I am mistaken are to identify children who may have developmental disabilities.
He will now be assessed based on the Nelson scale which focuses on the age he is at for each area rather than where he should be for his actual age. I think this will be much easier to help us understand the next steps in his development. We see little improvements and new achievements but we find that the standard ages and stages just doesn’t celebrate or include those and will continue to score zeros despite developing slowly at his own pace.

On the plus she has weighed and measured him and he is in the 25th percentile which is where he has been all along. This made me feel so much better about his eating habits as I do worry he may be underweight but apparently he is perfectly healthy… which is always good to hear.

I think because Sarah was all we had know for 4 years we held her on a pedestal and it was unfair to presume Louise would be inferior to her. She has already made a brilliant first impression but I guess I’m just skeptical due to the amount of agencies who have failed to uphold their promises but Louise seems really promising and honest and I guess that’s all we can ask for. She will only be with us until William starts school in a years time in which the school support will take over… if we get in but thats a whole other worry for another day.

As always, much love from The Buckley’s 😘 xxx

Posted in Autism In The News

Imprisoned for having autism?

Meet Ryan Addison

I wanted to share with you some details from two articles published by The Independent and Hull Live about Ryan Addison.

Being from Hull myself the story automatically caught my attention for some pretty disturbing reasons. Firstly the article on Hull Live hold the title ‘Innocent Hull man locked up with criminals for years because of his autism’
When Ryan was 17 years old, verging on adulthood he showed signs of concerning behaviour which cumulated in him trying to take his own life. He was then voluntarily detained in hospital for help with his behaviour.
With him being 17 at the time he would not have been able to give permission for this himself so the mental health professionals must have asked him mother and father for consent on his behalf.

Ryan’s mom was pleased and thought after some treatment she would get her boy back home, a few weeks maximum she thought… That was 14 years ago.

Sadly Ryan was wrong diagnosed as suffering with Schizophrenia which was only re-evaluated 12 years after the initial diagnosis. He did not have Schizophrenia but was actually autistic.
For those 12 years with an incorrect diagnosis Ryan was treated with drugs for something he did not have. Ryan has been so heavily medicated he lost 14 teeth and had to be fitted with denture which has since been misplaced.

After 10 years Ryan was moved to the Humber Centre for Forensic Psychiatry which according to the NHS UK site provides medium and low security for patients suffering from mental disorders, learning disabilities and personality disorders; offering assessment, treatment and rehabilitation.

Within 4 months of arriving at The Humber Centre Ryan was put into long-term segregation and between October 2017 and February 2018 he was not permitted to have any contact with the outside world after showing aggressive behaviour and violence. The department of health state in their section of the right to have visitors when detained under the mental health act the below…

  • You can have visitors but different wards have different rules about times etc.
  • Your visitors can be very important in giving you support.

The Code of Practice also states

  • All patients have the right to maintain contact with, and be visited by, anyone they wish to see, subject to carefully limited exceptions. The value of visits in maintaining links with family and community networks is recognised as a key element in a patient’s care, treatment and recovery. Article 8 of the European Convention on Human Rights (ECHR) protects the right to a family life. In particular, every effort should be made to support parents to support their children. Patients should be able to see all their visitors in private, including in their own bedroom if the patient wishes.
  • Visits should be encouraged and made as comfortable and easy as possible for the visitor and the patient. Reasonable and flexible visiting times, access to refreshments and pleasant surroundings will all contribute to a sense of respect for the patient’s entitlement to be visited
  • In addition to visits, every effort should be made to assist the patient, where appropriate, to maintain contact with relatives, friends and advocates in other ways. It is good practice for patients to be placed in a hospital as close as reasonably practicable to their families, and patients should have readily accessible and appropriate daytime telephone and internet facilities (see chapter 8). Where a patient is placed out of area it is good practice to consider the needs of family and carers who have to travel in order to visit
  • There are circumstances where hospital managers may restrict visitors, refuse them entry or require them to leave. Managers should have a policy on the circumstances in which visits to patients may be restricted, to which both clinical staff and patients may refer, which should be clearly displayed on the ward.
  • There are two principal grounds which could justify the restriction or exclusion of a visitor: clinical grounds and security grounds.
  • The decision to prohibit a visit by any person whom the patient has requested to visit or has agreed to see should be regarded as a serious interference with the rights of the patient and a blanket restriction may be considered a breach of their article 8 rights. There may be circumstances when a visitor has to be excluded, but these instances should be exceptional and any decision should be taken only after other means to deal with the problem have been considered and (where appropriate) tried. Any such decision should be fully documented and include the reasons for the exclusion, and it should be made available for independent scrutiny by the CQC or service commissioner, and explained to the patient. Hospital managers should review the effect on the patient of any decision to restrict visits. These policies should be risk-based and not impose blanket restrictions, eg no visitors for the first four weeks after admission
  • From time to time, the patient’s responsible clinician may decide, after assessment and discussion with the multi-disciplinary team, that some visits could be detrimental to the safety or wellbeing of the patient, the visitor, other patients or staff on the ward. In these circumstances, the responsible clinician may make special arrangements for the visit, impose reasonable conditions or if necessary exclude the visitor. In any of these cases, the reasons for the restriction should be recorded and explained to the patient and the visitor, both orally and in writing (subject to the normal considerations of patient confidentiality). Wherever possible, 24-hour notice should be given of this decision.
  • The behaviour of a particular visitor may be disruptive, or may have been disruptive in the past, to the degree that exclusion from the hospital is necessary as a last resort. Examples of such behaviour include: • incitement to abscond • smuggling of illicit drugs or alcohol into the hospital or unit • transfer of potential weapons • unacceptable aggression, and • attempts by members of the media to gain unauthorised access.
  • A decision to exclude a visitor on the grounds of their behaviour should be fully documented and explained to the patient orally and in writing. Where possible and appropriate, the reason for the decision should be communicated to the person being excluded (subject to the normal considerations of patient confidentiality and any overriding security concerns).

The hospital manager has a responsibility to regularly monitor the excluded visitors list and keep all parties informed which was according the articles was not adhered to so he or she should be facing severe disciplinary action and potentially dismissal.

I want to add here that it wasn’t until 2018 that Ryan’s mom said it was clear he should not be locked up. Now I am not sure if the article is paraphrasing but misdiagnosis or not, Ryan’s behaviour was still very challenging; It took 9 staff to restrain him when he became aggressive which did result in Ryan suffering some injuries which shouldn’t have happened however if he was aggressive then there would be the need to restrain him from hurting himself or others in the facility.

It is officially stated that detaining those with autism diagnosis is not effective however figures do show that the number of those detained in facilities has more than doubled within 5 years which is a terrifying jump in numbers.

Sharon claims that she was not able to physically touch her son, take up to date photos of him or even see his room. she states she called the centre twice a day; once in a morning and once at night to see how her son was doing but in October 2019 she was unable to reach the ward despite multiple attempts. A member of staff at the facility had blocked Sharon’s number and when she dialled from her husbands phone that was blocked too. It was only then that she made an official complaint but no one would admit to blocking their calls and apparently it was untraceable due to the number of staff on duty but senior managers at the facility have given a stern warning to all staff that such behaviour is not acceptable! (apparently that needs spelling out) Thus meant that no one could be held accountable for such a heinous act and most probably still work there with vulnerable people and their families.

In a statement Humber Teaching Foundation Trust said: “We are in complete agreement with Mrs Clarke that Ryan’s current hospital placement is an inappropriate environment to meet Ryan’s needs. We are pleased that, following positive meetings with commissioners last week, together we are now taking the steps required to discharge Ryan into a community placement that will be better placed meet his needs. We understand that Ryan and his family feel that this process has taken a longer than expected, however, it is important that we find the right placement that meets Ryan’s complex needs and enables him to progress further with his recovery”

I’m a glass half empty kind of person and I do find it odd that it has taken so long for the failures around Ryan’s care to be addressed not only by his family but also the Clinical Commissioning Group and the NHS. Did Ryan just slip through the gaps? or was he forgotten about because it was more convenient for all parties?

The Government has now agreed a new 62 million pound fund to help local councils tailor bespoke packages to suit the needs of adults like Ryan however Covid-19 is more than likely to have an impact on this due to the amount council have spent during this pandemic.

His mom thinks that when he is released he will become more like the young boy she remembers and will truly blossom however that was a long time ago but I sincerely hope that is true for him. He has had a huge portion of his life taken away and although he can not get back the years he has lost I really hope he can have many fulfilled ones in the future. I will update about his release when possible.

Check out the original article from The Independent here
And the Hull live article here



Posted in Brief updates

In a GAP

I think I have been pretty vocal about how all appointments and referral seem to go round for us but I held out hope (in vain) for our most recent one, to the nappy service 🚼

Let me put a little context to this. William is 3 years old but developmentally under a year. Due to his physical age he is the highest available size of nappies. He is not currently able to be potty trained as he isn’t aware of when he needs to go toilet or if he is he is unable to communicate this as of yet.

William also suffers from a lazy bowel and it doesn’t always function and it should so mild laxatives are often needed to relieve him of discomfort as he can go over a week before naturally being able to pass a stool. As you can imagine the build up of waiting to go natural or the explosion of laxatives puts any nappy to the test but imagine this happening when there isn’t any that will fit him 🤢

William also displays sensory seeking behaviors and unfortunately this involves a fascination with his own faeces. The will result in him smearing the contents of his nappy over himself and his surroundings and on occasion he has put it in his mouth.

On a night we have had to put him in a onesie to stop him taking his clothes off and removing his nappy. Unfortunately for us the little Houdini has now learnt to remove a onesie as you can see below… thankfully he was busted in time and put back into his clothing jail.

The look of pure joy that he is naked and put of his awful onesie

We were worried as he gets bigger what will do and we were told that there is a nappy service in our area which provides children with special needs nappies in bigger sizes which is amazing. However nothing is ever that simple.

Let me start from the beginning…

  1. Our GP sent a referral to the community nursing team
  2. The community nursing team rejected this as he is under 4
    • NO ONE NOTIFIED US UNTIL WE CHASED THE REFERRAL
  3. Our GP sent a referral to paediatric medicine
  4. The sent it back to the GP with advice to refer to community nurses or the learning disability team
    • NO ONE NOTIFIED US AND OUR GP CLOSED THE REFERRAL
  5. I chase the paediatric medicine team who told us what they had done
  6. I call the GP and they tell me to call the community nursing team
  7. I call them and they only know about the original referral and won’t accept another one as he is still under 4
  8. I call the GP and have to tell them exactly what the paediatric medicine team have told me
    • SUDDENLY NOW I HAVE TOLD THEM WHAT HAS BEEN SAID THEY CAN SEE IT ON THEIR SYSTEM
  9. They can not help as the person who deals with referral is off (I don’t think they’ve ever been in the office when I have called) but a manager of the surgery will call me back
  10. Kerry calls me and has no idea why she is calling me. She thinks it’s regarding his autism assessment.
    • I HAVE TO REPEAT THE FULL CYCLE AGAIN WHILST SHE REPEATEDLY TELLS ME SHE DOESN’T KNOW WHATS HAPPENED
  11. She is going to call our health visitor and William’s own paediatrician for help and call me back
  12. She calls back, she has left word for the health visitor but doesn’t know if she can help. She has called CAMHS (children and adult mental health services) and they can not help. She has called learning disabilities team and they can not help and she doesn’t know what to do.
    • WELL KAREN (SHE IS NOW A KAREN, I HAVE DECIDED) NEITHER DO I AND IT’S NOT MY JOB TO KNOW!
  13. She will send me some links to places that can help.
    • DO YOU KNOW WHAT SHE SENT ME… A LINK TO A CHARITY SHOP AND A SITE TO SUPPORT ADULTS WITH AUTISM. SO FUCKING HELPFUL!

I found it hard not to cry or be angry whilst on the phone with Kerry/Karen and I’m sure she could hear the break in my voice when I asked her ‘what are we supposed to do now?’

And that is the question, what do we do now?

We can’t be the first parents who have come across this, we can’t be the first to be in this situation. What happens when you fall into the gap? Do we just stay there for 8 months and have a bare bottomed child or tie a carrier bag to his waist?

If I failed to change and clean his bum for him when he was physically under a year old then I would have been classed as neglectful but what about now? He isnt physically under year but developmentally he is still in the same place. Am I being neglectful? Or are the services in place being neglectful by allowing this?

Posted in Emotions

Understanding and accepting

Before acceptance must come understanding.

People often struggle to differentiate between a child with autism and a child who is being naughty.

As a parent who suffers with anxiety it is very difficult to go to certain places and deal with other people who don’t know William like we do.

Something as simple as a journey on a bus can set me into a tailspin, a small journey can lead to an argument due to the fact other passengers look at William as see what they deem as an ablebodied 3 year old in stroller taking up a space they feel someone else needs more. Not all disabilities are visible and what give you the right to assume!

A trip to a supermarket can lead to a full meltdown due to the hustle and bustle of different people, a different environment, bright lights and loud noises. One the rare occasions he will walk, he will often end up laid on floor and go floppy because he can’t handle the stimulation and lack of familiar surroundings and comfort.
This is not a toddler having a tantrum because he can’t get sweets or doesn’t want to walk, its because he is in pain.

When we go to a restaurant, cafe or bar he will beeline for any food he can see, we will stop him before he takes it but it can lead to awkward conversations, dirty looks and whispered remarks.
This isn’t because he isn’t fed at home or because he is rude. This is because food is such a high motivator for him and that the fact it doesn’t belong to him doesn’t even register.

I shouldn’t have to apologise for my son for being himself but I find it becomes a more frequent occurrence as time goes on. I shouldn’t have to explain why he is the way he is, there should be a wider understanding of the autism spectrum leading to acceptance.

I truly believe that autism awareness and understanding should be educated in schools so that future generations don’t make the same mistakes and assumptions.
There are no definitive figures of those with autism as no record or register is kept but based on recent surveys 1 out of 100 has autism.


Think of the children in your child’s year at school, think of the children who you went to school with. I wish I had been more aware, more educated and a better person.

I want that for the future, for children like William and for parents like us who often feel we should apologise on behalf of our son when maybe, just maybe they should be apologising to us for their small mindedness.

Much love, The Buckley’s Xxx

Posted in Causes

Behind the eyes

As many of you may have read previously William has been at the Hull Eye Hospital a few times to check his eyesight.

When children lack eye contact, depth perception and hand eye coordination the word autism doesn’t automatically spring to mind. Doctors and healthcare professionals will try to rule out any other issues and William’s visit to the Eye Hospital was one of his first exploratory check ups.

I want to tell you about the Hull Eye Hospital and how brilliant they have been with us. The staff are all so welcoming and were knowledgeable on how to deal with a child like William, they had a slew of highly engaging toys in order to try and get him to look in the right directions so they could look at his eyes. The waiting room for children however leaves a lot to be desired which is a big reason for my post but we will get to that. They make the most of the area they have and fill it with toys and books and sometimes very noisy children waiting for theirs or their siblings appointments. This atmosphere for children like William isn’t ideal but it is still much better than most places offer.

Hospital Chief Finance Officer, Lee Bond, is going to be doing something that some of us only dream about… well in my case have nightmares about, exercise!!! To be more precise he is planning on running the London Marathon, that’s 26.22 miles. Unless my math is exceptionally wrong (a high possibility) that works out on average if you were to walk it 52,440 steps

His goal is to raise £10,000. This will enable the opening of a sensory room for children with additional needs attending the Eye Hospital at Hull Royal Infirmary. The marathon is 5 months away (granted it has been postponed as should have been April I believe) they are only 59% towards the target which I’m hopefully can change quickly in the coming months.

For us as his parents any appointment brings upon anxiety and irrational thoughts. ‘What if he’s blind?’ ‘How will he handle wearing glasses?’ Etc etc… however as you are probably aware William’s eyesight is fine although he is due another check up before he can be discharged.If it brings anxiety out in us can you imagine how the child feels? An unknown clinical place, strangers and odd smells, waiting around without your usual security blankets (William’s are currently our metal egg poacher, his changing mat or the dog) Imagine not understanding why you are in this odd place or why people are trying to force eye contact upon you when you don’t want it and never have. Waving pictures your face and holding you still.

A sensory room could lessen the trauma for patients like William. There are multiple types of sensory rooms however the main focus is to help children feel comfortable and calm, explore in a safe environment and engage childrens sense. I think we could all use one in our workplaces or even right now in our ‘home offices’ also known in our house as a baby changing table next to a window.

Please think about any savings you have made whilst we have been on lockdown and try to dig deep to support such a wonderful cause that will help so many! So I implore you, please spare anything you can and use the link below to donate. X

https://uk.virginmoneygiving.com/charity-web/charity/displayCharityCampaignPage.action?charityCampaignUrl=HullEyeHospitalSensoryRoom

Posted in Causes

Not worthy

Look at these faces… remember them x

I recently read an article detailing the fact that a doctors surgery in Somerset sent a letter to Voyage Care, a facility in which supports adults with Autism and other learning disabilities.

The letter stated that the adults in their care should all have a DNR agreement in place in light of the current Covid-19 pandemic. In case you don’t know what DNR stands for it means do not resuscitate which basically means that if your heart stops or you can not breathe then medical staff will not issue CPR. No chest compressions. No mouth to mouth. No respirators. No defribrillation.

The ethics of asking anyone to sign or agree to a DNR is shaky at the best of times.

This letter was sent without any consultation with the families of the adults in question. Having any form of learning disability is never a reason to decide not to help someone to survive!

The British medical association states that a blanket DNR targeting one group is completely unethical and unacceptable. But then that raises the question of who authorised this letter to be sent in the first place! There is a huge stigma around those with learning difficulties including Autism as many people do not fully understand. We as a family are still only dipping our toes into the waters of understanding.

I simply can not understand how anyone would think it was ok to send such a letter! Can you imagine either been that ignorant or prejudice that you decide a whole group of people don’t deserve to live? Look at the people who pump themselves full of drugs and alcohol… they deserve transplants and a second chance at life but my boy when he is older would not?

Remember Emma, Mark, Martin, Ted, Tom and Warren? If not scroll back up and take a second look…

In 2007 Mencap published an article called ‘Death by indiffernce’ that highlights the fact there is an institutional discrimination within the NHS which leads to those with learning difficulties getting a substandard quality of care or in some cases none at all.

Emma. July 2004. 26 years old. Emma had a learning disability, this mean she often exhibited challenging behaviour and had difficulty communicating. Emma had Lymphoma B1 cancer. Her survival chance was 50:50. Her treatment was delayed on multiple occasions as she could not consent to it. No pain relief was given. The high court had to get involved and when treatment finally started palliative care was the only course to take.

Mark. August 2003. 30 years old. Mark had a severe learning difficulty and very little speech but he had his own way of communicating with his family. Mark broke his femur and had an operation which resulted in him losing a lot of blood (40% of it to be precise). The staff also failed to give him his epilepsy medication. He was discharged despite still incurrring pain and had to be re-admitted on multiple occasions. It took 3 days for the pain team at the hospital to see him. He died less than 9 weeks after his operation. The medical staff involved did not believe Mark’s family when they told them something was terribly wrong with him.

Martin. December 2005. 43 years old. Martin had a learning disability and no speech. Martin suffered a stroke and was sent to hospital were he contracted pneumonia. The stroke effected his ability to swallow so he could not take in food or water orally. He was placed on a drip which he didn’t handle well and often pulled out. On his second week in hospital it was established that the drip wasn’t providing him with the nutrients he needed. A speech and language therapist visited him repeatedly and advised he should be nil by mouth and other methods of feeding should be introduced. He was in hospital 3 weeks before they decided to intervene and by then it was too late. His veins had collapsed and a PEG feeding tube needed to be inserted but he was too unwell to withstand the operation. Martin went 26 days without food and nutrients before he died. The hospitals policy was to introduce alternative methods of feeding after seven days but they failed to adhere to it costing him his life.

Ted. May 2004. 61 years old. Ted had almost no speech and a severe learning disability. He was admitted to hospital with urine retention requiring a minor operation and remained there for 3 weeks as he suffered a mild heart attack and a post operative infection. His condition was assessed as concerning but the hospital pushed to discharge him back to his residential home. He was sent home and collapsed and died the following day. Following an inquest it was established that he had died from aspiration pneumonia.

Tom. May 2004. 20 years old. Tom had profound and multiple learning disabilities. Tom’s school advised his parents his was distressed but presumed he wasn’t happy there however they knew he was distressed because he was in pain and pushed for medical investigations. A consultant stated further testing was needed but it seemed to be an issue with his digestive system. No further investigation took place. Tom’s doctor decided against a PEG feeding tube because of fears Tom wouldn’t tolerate it. There was no discussion of alternative feeding methods with his parents. After school was over there was nowhere suitable for Tom and he was placed in a psychiatric unit who stated they would assess his needs and act upon them. They didn’t. Tom was losing weight fast and expressing some disturbing self mutilating behaviour in which his parents were sure it was him expressing his pain. Tom was moved to a social services residential home who admitted him to hospital. Tom had an ulcerated oesophagus. The hospital agreed to fit a PEG and the operation was carried out. Tom died before he could receive the nutrition he needed. So many different agencies look after Tom before he died and no actions were carried out resulting in his death.

Warren. September 2004. 30 years old. Warren had a severe learning disability and very little speech but could communicate well with his family. When Warren first showed signs of distress his parents called the doctor out on three occasions. His parents had their suspicions that he had a problem with his appendix or bowel but the doctor said no. A month down the line they called the doctor out again as he was having trouble swallowing and losing weight. They were told it was a virus. As he was not eating he was also not getting epilepsy medication as it was administered via his food. The doctor gave paracetamol and diazepam to calm his seizures. The next day his parents called an out of hours doctor out who told them to take him to hospital for a stomach xray but that nothing was seriously wrong. A few hours later they called him again and an ambulance was sent. Warren’s parents deceived a negative attitude towards Warren by the hospital staff. 2 hours after admission Warren had died. It was his mom who noticed he had stopped breathing. He died of an infection caused by appendicitis and a blockage caused by a paralysed bowel. Warren could not communicate but multiple people refused to listen to his parents concerns despite them knowing him better than anyone.

Remember them… they are only a small selection of people.

It took the deaths of Emma, Mark, Martin, Ted, Tom and Warren to bring about an inquiry into the inequalities within care that people with learning disabilities face.

Death by indifference: 74 deaths and counting…5 years on. Published in 2012 contained multiple case studies. Including the below remember them; Sophie, Kirsty, Lisa Barbara T, Daisy, Chantel, Carole, Kyle, Betty, Maria, Barbara D, Christian, Karen, Clive, Paul, Tina, Brian, Christopher, Ronnie, Kelly, David I, Michael, Alan, Sandra, Anne, Nicholas, David T, Sammy, Susan, Noel, Raj, Jasseke and 15 unnamed people.

Seems like a large number doesn’t it? Well almost 1200 people with learning disabilities die unnecessarily in hospital each year! Mencap have launched a campaign called ‘treat me well’ which advocates in making simple changes which will have a big impact to the way in which hospitals deal with patients with learning difficulties. I have signed up for as much information as possible in regards to the campaign so hopefully we as a family can get involved in making things better because let’s face it… it couldn’t get much worse.

Mencap, the voice of learning disability.