Silence and Dismissed

Silenced and Dismissed

I mean, where do I start? What part of our story is the most shocking, the most distressing? When you thought it could not get much worse, or you held out hope that things would improve, when you were promised things would change but they never did. I am so traumatised. Over the last five years my life, our lives, have disappeared in an endless battle with professionals, a never ending need to fight for my daughter’s life, to be listened to, to be believed, for her to get help, before it is too late. The reality of only hearing if that were to happen, “lessons will be learnt”. I am trying desperately to avoid it ever getting to that point, to avoid waiting years for an inquest where I only find out then, what was wrong. I am fighting as hard as I possibly can to get the professionals to find out now before it is too late. Yet, there are days when I just think, I give up, I cannot keep going. Most days, I live in fear, fear that if I push too hard, say too much, I’ll be safeguarded, silenced - as so many medical professionals seem to rely on this tool to shut parents of learning disabled children up, when they complain, when they fight too hard for their child.

Complaint after complaint, promises never kept, and I go around in circles arguing the same points repeatedly with very little success. It’s exhausting. The months, the years role by. Whilst I watch my daughter’s distress, the pain she is in, her skills reducing, her happiness lessening and there seems to be nothing I can do? She cannot speak, she cannot communicate where the pain is, but she pleads with her eyes, she sobs, she throws herself around in distress, that distress increasing as the years go by. She is covered in bruises from the harm she does when she throws herself with such force. I am terrified for her. Recently, after much convincing to “allow us” to go for a second opinion, we saw a professor in neurology (in London). In the end, I paid privately with money I don’t have, desperate to help her, and fearing if we wait too long for an appointment she might not be here (we go back soon for more tests). I needed to find a way to help her. I wish I had done it years ago. But fear stopped me. Ever since 2020, there seems to have been a level of control wrongly asserted over me.

I’ve always thought, ever since she got poorly during the pandemic - when she had pressure in her brain (and there was a refusal to believe she was ill then)- she has never been the same and something changed. Yet, during that year, despite her being so well for over ten years - I was never believed. Instead, during that time, a safeguarding referral was made, believing that I was overly anxious, and that she was mentally ill. This beyond doubt was the worst thing that has ever happened to me. Medical professionals who had known us a matter of days and knew nothing of her genetic condition, quick to turn blame onto me, and in doing so cause me trauma I’ve never recovered from and deny my daughter of the medical help she needs. That was the starting point to what has been and continues to be the worst time of my (and no doubt Francesca’s) life. The very person who’s trying to help you, who understands your communication, who is your voice - blamed. I’ve been diagnosed with PTSD as a result of that incident and it continues in my thoughts every day (I’m not the only parent of a disabled child this has happened - who’ve been destroyed by it, it’s a common theme. I was even told - “I should see it as a positive, as all the professionals will come together now”. But, within hours I was being asked if I’d thought about taking my own life. I’m sure in years to come it will be exposed as similar to the post office scandal (link to extent of abuse by professionals below).

It is my strong belief from that point on, despite the referral never being accepted, that professionals changed their attitude towards us. Refusing to ‘allow’ us to get second opinions at other hospitals, containing us to one, even if that hospital was the wrong one, or was failing her. It was from that point in 2020; I feel that I was “controlled”, “bullied” somewhat by the hospital trust. There are things I cannot mention right now as to all that’s happened through those years but there was an insistence from the learning disability nurse at the time, that I be ‘accompanied’ to every appointment, that I did not speak directly to consultants or their secretaries (that they would organise any appointments and communicate for me), that I must report back any conversations I had. I was ‘told off’ many a time by this nurse (who has now left), and she had previously been ‘stalking’ my social media account, with reference to my social media showing up in my daughter’s medical notes. It is my belief the whole incident that happened in 2020 (and a complaint I’d put in about her the year before) shaped the way the hospital has viewed me. She seemed to get involved far beyond what a learning disability nurse normally gets involved in. Potentially shaping doctors thoughts, views and making it more difficult than it ever should have been to get my daughter the help she needed.

Throughout these years since my daughter’s health deterioration – lorazepam has been used as a sticking plaster, whilst professionals have said, it’s just behaviour, it’s mental health. Three different mental health doctors over six years have said it’s not mental health. It’s easy isn’t it, for mental health to be used as the answer. Each time, medical professionals push it back to mental health, we wait, they assess, it’s determined it is not mental health, and we get pushed back to medical. But medical don’t do anything, “we’ve done all the investigations”. You meet different doctors, “it’s genetic”, “it’s mental health”, “it’s behaviour”, “it’s just deterioration”, “it’s the environment”. Honestly, I feel like turning towards the wall and just banging my head repeatedly on it. I may as well have a tape recording of what the doctors will say and press it as they approach. It is so predictable. The easy answer. The get out of jail card. And so, the months go by, the years go by. Life on hold. Waiting, watching, hoping but nothing changes. You see your beautiful brave daughter disappearing and you wonder when anyone will do anything before it is too late.

Why am I posting this? I’ve had enough. The relentless promises, the relentless harm done to both of us. I have a vision of these professionals going home after a tough week at work, glass of wine, “wow, what a week I’ve had I need this”. Or I’ve waited all week for a response, only for their “on annual leave for two weeks to come back at you”. And they’ve no idea; of the reality I am facing. I see the end of the working day looming on a Friday, knowing that is it, another week has gone by, and there’s been no answers, no help, no moving things forward. And you wish the weekend away, so you can get to Monday, so you can start again, in battle mood, hoping this will be the week when someone listens and she finally gets the help she needs. Another year drifts by. You sit in endless best interests’ meetings, where promises are made, and nothing ever changes. For example, the best interests meeting Leeds Hospital had with me in December, after an absolutely shocking long admission for my daughter, when there were yet more failures – and the relentless never-ending stream of doctors that all had different opinions. In that best interests meeting, the promise by the risk management lead was that they’d assign a clinical lead. They recognised how complex her health is. But, it is now mid-April, and surprise surprise – no clinical lead. I mean what is the point? Is my life, my time not valuable? Is her life not valuable? Does her pain, her distress not matter? Do all these professionals think I just want to sit in endless best interests’ meetings, listen to promises being made and then nothing come of it? Hold your hands up if your not capable, if you cannot do what you promise, admit it is beyond your capabilities before it is too late and stop holding pointless best interests meetings which clearly are to make it look like you are doing something but in reality the opposite is true.

The same goes for PALs. You can submit PALS complaints; they take months to investigate and respond. Always late. When they do the investigation has been inadequate, covering their tracks. Over the last year, we’ve had several medication errors, failure to fit an NG tube for days, leaving her without adequate nutrition and hydration. They failed to do necessary investigations to determine why she was not eating and instead went full steam ahead with wanting to fit a peg. When a different consultant came on duty four weeks later, tests were finally carried out, discovering a stomach ulcer and infection. Do they think we just want to sit in hospital endlessly? Do they realise the implications that has on us? For my daughter, it means she is left in pain for weeks, wondering why the doctors are doing nothing, for me, it means caring 24/7 in a hospital room, with little sleep and facing financial hardship as our benefits are pulled from us. I spoke recently to the lead for safeguarding who did not realise patients lose benefits the longer they are in hospital. Is there any realisation that a failure to organise care, co-ordinate, listen, engage and help in a timely fashion has not only on the patient but the person caring for them? My own health has significantly deteriorated and I’ve no doubt it’s a consequence of the relentless battle to get my daughter the help she needs. One recent pals complaint tried to indicate that one night in the patient hotel should have enabled me to rest, with no understanding of the sheer mental and physical exhaustion caring for a disabled child 24 hours a day holds. Of course, you say that and the response is “are you not coping”. No realisation that if they We’re expected to be on shift 24 hours a day, regardless of the person they are caring for being a relative they also would be exhausted. Add into that the stress and upset of seeing your child deteriorate then they’d have a different perspective. There’s no empathy, no understanding, no support, just blame filtered back to the parent.

Despite numerous investigations over the last five years, the hospital only discovered in December 2025 that she was missing her gallbladder. Missed on every scan, not reported by radiologists, not sure how it was missed for so many years. However, have we seen a hepatic biliary specialist since then? No, told to go through PALS. Have we had an apology? No. Four months on, PALS still have not responded in relation to the ‘missing gallbladder’. I am not sure why PALS is considered the answer to treatment of a missing gallbladder.

If Leeds have not got the capability to care for my daughter, to investigate, to give her the help she needs, they should reach out to other more specialist hospitals. She now weighs only 34 kgs, losing nearly 10 kgs in the last 8 months - since her health deterioration worsened. There is no shame in not understanding complex genetic conditions, but there is no excuse for turning your back on her and for leaving her to suffer in this way.

The endless failures, the systems that are meant to protect seem instead to facilitate abuse. Who I was, is long gone. I am exhausted, traumatised. When I was little, having been born with congenital heart disease, I had positive experiences of hospital. Now, I have no doubt the relentless battles, the trauma, the distress, the exhaustion has caused my own health to deteriorate this last year. Now facing a possible heart transplant and battling every day to get my daughter the help she needs. I won't give up but, Leeds, could you please address your failures and the harm done (which has already been subject to one ombudsman's report) endless complaints, apologies, promises never materialise. If you don't know how to help her, or you can't actually do as you promise, then please reach out to a more specialist hospital who can before it is too late. Please give us our lives back.

https://www.gofundme.com/f/helpingwithhospitalaccommodationcosts

https://essl.leeds.ac.uk/law/news/article/1833/leeds-research-into-the-impact-of-illness-fabrication-allegations-on-disabled-families-5-news

Part 2 - social care and the ICB

Silenced and Dismissed - A mother still fighting

I am absolutely done in.

I am exhausted in a way that sleep does not fix. This isn’t just tiredness, it’s years of fighting, of being unheard, of watching my daughter suffer while I try to force the people who are supposed to help us to actually do something. For over a year, I have been trying to put the right care in place at home for my daughter, knowing my own health is deteriorating. Since April last year, I have been saying the same thing over and over again:

We need proper care. Skilled care. Safe care.

Because I need to have procedures. Because I need to stay alive. Because I need to be here for my daughter. And still, nothing changes. The same arguments on repeat - over and over.

My daughter is not “just” complex, she is non-verbal, she cannot tell you when she is in pain, she cannot tell you what is wrong. She shows you, through distress, through a change in behaviour. That change is her way of communicating. She is at risk of choking, she has seizure-like episodes, and she is visually impaired. She relies entirely on the people around her to keep her safe. And yet, despite having a CHC package because of how serious her needs are, I am still fighting to get carers who are even remotely equipped to care for her. Untrained staff. People “learning on the job.” People who are not trained in diabetes or administering medication. People feeding her without dysphagia training. For weeks, I was told by the care provider that a staff member was trained—only to find out they weren’t. Another asked me, 'what dysphagia was'.

Do professionals understand what that means? That could have killed her. There is no epilepsy training. No Makaton, her only real way of communicating (previously stated clearly the level of makaton trained staff needed). No diabetes training. No Dysphagia training. And this is being accepted by social care and the ICB who have delegated responsibility to them. There are huge gaps in the provision, with just one experienced carer. With the gaps come the suggestion of using 'agency', repeated unfamiliar unskilled carers coming into our home, night after night, day after day, distressing my daughter even more (no sudden changes and continuity her EHCP used to say). Moreover, I am apparently not 'allowed' to know anything about their experience or training because of "GDPR" rules. Nonsense.

Shame on the care provider also. Providers are accepting high-value, complex care packages without the competence or staffing to deliver them safely, then pretending they do.

When things go wrong, the parent carer becomes the scapegoat.

Vulnerable people are left exposed while regulators remain too distant.

If you can’t provide the care, don’t take the contract, because this isn’t just failure, it’s profit from vulnerability. If you can’t provide the care, don’t take the contract because this isn’t just failure, it’s profit from vulnerability.

I am expected to rest in this situation.

How?

How do you rest when your child’s life depends on whether the person in your home knows what they’re doing?

And then there’s everything else.

The meetings. The constant meetings. "can you jump on teams", "can we have an MDT tomorrow", no regard for anything you might be doing. The endless relentless need to argue the same points over and over. The very points, the very needs that were set out quite clearly and adhered to for years on her EHCP.

Attending meetings where multiple professionals already know what’s going to be discussed - (and in some cases already decided) but I don’t. Being questioned. Cross-examined. False accusations. No one challenging it. No one stopping it. Piling more and more pressure on an already broken traumatised mum.

A mum who is unwell, undergoing serious health issues herself, trying to stay alive to be there for her daughter for as long as possible. But the pressure piles on and on. Firefighting the situation every day, stepping in to care, when I should be resting. The whole situation making my health worse than it should be at this stage.

At the same time as fighting for my daughter's health and being so desperately worried for her. My girl, disappearing and there’s no empathy at all from social care (if there is - they don’t show it).

No thought as to how I must be feeling. Just blame and random thoughtless suggestions - that can trigger my heart into life threatening arrythmias.

That is not care.

I thought when I got to this point, when heart transplant was mentioned, things would change. Instead one social worker said, “I thought you’d look more breathless”.

I thought people would understand. I thought services would come together around us. I thought it would feel like a warm, comforting hug. Instead, it has been the opposite.

Cold.

Defensive.

Relentless.

Constant justification.

Constant explaining.

Constant fighting just to be heard.

Weeks and months just drifting by while nothing actually changes.

Do they understand the fear I live with? The fear that I might not be here. The fear that she might not be safe without me. The fact I’m simply trying to put the right care in place so she’s safe and I can get the help (and rest I need). So I’ve a skilled team around me helping Francesca get the help she needs. But, the ignorance that they think 'any carer' will do. The fear that something will happen, and it will be too late and all that will be said is:

“Lessons will be learnt.” - as it is said many times over and over, in every complaint response I get.

There is no quality of life anymore.

Not for her.

Not for me.

Not for her Grandma and Grandad who at 76 and 80 keep having to step in to help when there are gaps in care. Who leave after helping me for the day looking far more exhausted than when they arrived. Distressed at how unwell their granddaughter is and how unwell I am.

This is meant to be a CHC package of care

I did not know that when you got CHC funding, it would still mean I would be fighting so hard to get the skilled carers she needs in place. We've no nurse care manager - that could help - instead, social workers, who don't have the clinical experience to help, to make a difference.

There is no time to make memories. No time to just be her mum.

Every moment is spent fighting, chasing, escalating, complaining, just trying to get the basics in place.

Even when I know I need to go into hospital, I can’t. Two weeks ago, I needed to go in, only to refuse to go when the bed manager rang - “sorry, I can’t come I’ve no carers”. I fully suspect my own medical team if beyond frustrated with me (not understanding why I can’t just leave her, why a skilled capable team isn’t in place a year after they wrote to social care stating the help needs to be in place.

Unless Francesca is with skilled, competent carers, her life is at risk.

So I stay. Putting my own life at risk.

And I fight.

I am tired of doing this by myself.

I am tired of staying silent.

My health is deteriorating and I am not going to stay quiet anymore.

Because this is not just “difficult.”

This is a system failing a vulnerable young woman.

This is unsafe.

This is wrong.

I will not stop fighting.

But I should never have had to fight this hard just to keep my daughter safe.

https://www.gofundme.com/f/helpingwithhospitalaccommodationcosts