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We want to hear from you: please tell us about your experience of the online community.

How do I get services to listen

LouRoots8

I want to scream.

I am going though a very slow legal process due to the local authority refusing to meet my needs under the care act. It’s been 3 years. The pattern is social service do a poor needs assessment including no medical evidence. Refuse my needs. Make out I’m lying or manipulating a situation. I get forced to go to a community care Solicitor. The LA drag the process out. As soon as we are close to a judicial review the legal aid runs out. I then have to wait 6 months and start again. Nothing has got sorted.

Without a acknowledgment of my need via a care plan I can’t get my needs addressed. Social care are acting as barrier to CCG/ CHC funding. The situation is ridiculous.

CHC are being as difficult coming to access me. No idea why.

Social care refuse to safeguard me. In the last year there has been 20 external safeguarding concerned raised. This was out of concern to my well-being and the level of risk I have been left in due to lack of care. I have nearly died as a result and have requested a serious safeguarding review. As I feel I meet the criteria. They refused the request as I am still alive. Although the guidance is that a safeguarding review can take place in cases where dearth would have happened if there was intervention. There has been 3 occasions in 2 years where I have almost died due to a neglect of my needs. I required ITU on 2 of those occasions.

I have also found similar case reviews in community care where people have died in similar circumstances and have showed this to social care.

I can not access advocacy as the only provider say my needs are too complex and they are only a short term service.

My list of health needs is ridiculous and I feel embarrassed to have so many things wrong with me.

Brain
Moyamoya Disease - rare progressive diseases that is causing recurrent strokes, TIAs. , Movement disorder , vision loss. - started a year ago and rapidly progressing I have no blood flow on the right and almost no blood flow in the left side of my brain. My diseases is very advance. Waiting for an admission to see if operation is possible. Delays due to covid.

Respiratory
severe asthma- I go into respiratory failure a few times a year. 20 ITU admissions in the last decade. On all possible treatment.

EDAC- my trachea is collapsed 90% , treatment is use of a NIV (noninvasive ventilator)
sleep apnea- caused by brain and respiratory issues.

Chronic Infection/ cilia abnormalities- meaning I get lots of severe chronic lung infections. Require IV antibiotics a few times a year.

Cardiac
long QT syndrome

Endocrine
Type 1 diabetes
cushing diseases
Adrenal insufficiency
?? Lipodystrophy (further tests)

Other
lactate acidosis
Plus other health issues

I am finding the relentless battling for support exhausting.

So of the issues I have is due to how the NHS is set out. There is no communication between teams. Everyone treats everyone organ as separate issues. I’m under multiple highly specialised services who aren’t able to see outside there very narrow specialism. I’m under 21 consultant led teams. My GP won’t engage as he is overwhelmed.

I feel reframing my needs to me supportive and less firefighting would be beneficial to me. I can’t get on a palliative care pathway. I’m unsure why. I think It’s because they don’t fully understand all the different elements of my health needs. No professionals talk or really have any idea what is going on in one body.

Moyamoya disease there is no cure. Surgery can improve blood flow, but it’s doesn’t stop the disease from progressing. At the moment the disease is rapidly progressing. I’m having 8 mini strokes a month. This has happened in a year. What isn’t known is if surgery will slow progression. It won’t improve my current level of disability from the strokes. Considering my current situation has happened so rapidly Even with surgery I could be back where I am now within a year.

Respiratory wise. I’m on all treatments currently available and I have very severe disease that has just worsened as I have aged.

I’m not looking to be cured I am looking for quality of life.

I’m 33 of course I didn’t want any of this. Although I know I am not getting better and I know that it’s unlikely I will. So I don’t understand why reframing my needs to be supportive would hurt.

I don’t know where to go. I have tried every charity uk wide.

Social care are just awful and I’m stuck while they refuse to acknowledge my needs getting any care plan that meets my needs.

My current level of care isn’t enough for my needs.

I’m getting worse and I can’t do anything.

I am really articulate and I have done everything I can to try and get the help I am desperate for.

I am really poorly and I just go around in circles. I’m not well enough to do this anymore.

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Comments

Alex_Alumni

Hello @LouRoots8 I'm so sorry to read about your current situation, thank you for taking the time to explain everything. I can appreciate it can't have been easy to write, but well done for reaching out. It all sounds incredibly frustrating to say the least.

We'd like to be able to offer you support in whatever way we best can, and I'm afraid my shift is about to end, but please know that more of team will be on hand tomorrow to help support you. Unfortunately our records system is having a few issues today, but I wonder if you can tell me, have we ever be able to undertake a social care referral on your behalf before today?

In the meantime, if you'd like to talk to someone about your situation right now, you can always call Samaritans on 116 123 or you can email jo@samaritans.org if you prefer.

If you do feel in immediate danger please contact emergency services by calling 999, or go to your local hospital right away.

I'm sorry I can't be of more help tonight, but I want you to know that we hear you, and we'll do our best to support you.

Alex

chiarieds

Hi again @LouRoots8 - I'm sorry to see you still struggling to get appropriate care.

I wonder if you would be able to get NHS Continuing healthcare, in which case the following website my be helpful to advocate for you. Please see: https://www.beaconchc.co.uk/

LouRoots8

Hi @Alex_Scope

i did call the helpline around Xmas and was told they would contact my social worker and get back to me.

No one has got back to me and when I have tried to call the helpline it is always busy.

Not that I think there is much you can do.

The crux of it is I’m being failed on a massive scale, no matter what avenue I try I am shut down when anyone contacts social care or even safeguarding about the concerns. For example charities or MP they are told there is no problem that they are offering me XYZ. The issue I face is often what they offer is not suitable or isn’t what I’ve highlighted as a need.

my situation is really extreme at the same time I can’t see services backing down as doing so would mean they will have to admit wrong doing.

There is an element of trying to cover up failings. Instead of correcting the situation and helping my life.

As much as I would like to talk through the really difficult emotions I feel samaritans is not helpful to my needs. By the time I’ve explained the issues; they have asked a millions whys it’s easily an hour without even getting to any conversation about how I feel. I don’t need a quick chat I need dedicated support around coming to terms with what is happening, the way I’ve been treated, the delays in care. The progressive nature of my diseases and the Reality that I’m likely to die young. I don’t really need a listening service at this point I need action to make my life manageable.

The context and backstory to this situation is long and frankly tragic and is a text book example of when care goes wrong. It should have never have happened. Nor should have it hot to this mess.

I feel what is happening is institutional organisational abuse. That I can not protect myself from. Nothing I say is documented. Social care neglect my needs. Ignore my voice. The laws that are supposed to protect me are used to further abuse me or delay care/ treatment. There is widespread misuse of MCA, MHA, I’m not protected as a vulnerable adult under the Care act. Those who investigate the issues are the abusers and I can’t even get another area to look into this. This situation has now been safeguarded by charities, 3rd party professionals. Two different NHS trust. It is truly shocking and I can’t seemly do anything.

So much of this isn’t from me. I live in a area with extremely poor service provision. The issues in my care are political. They don’t have the resources to give me what I need, therefor they deny that need even exists.

The safeguarding issues are a real concern as I am vulnerable and there isn’t anything done to protect me from mistreatment. I am sure I will die prematurely due to the medical mismanagement and lack of multiagency working. There have been multiple near misses where delays in care have almost resulted in my death.

I highlight the same issues and they are consistently ignored.

The refusal to provide pressure care for a year has resulted in sores

I live in an inaccessible property without even the basic aids. This has led to fails. I have no fails prevention or technology.

None of my medical needs are care planned. Meaning i’m often mismanaged in emergency settings leaving to me to stop breathing and arrest calls being put out. Which has led to more damage, repeated ITU admissions.

There are consistent drug errors, I’m given medication I’m allergic two. I’m often not given medication. Again due to the chaos in my care my patient record is never updated and when is updated due to the amount going on it’s out of date.

There is a lack of any multiagency working. Between any teams. There fore there is a massive miss understanding of my needs.

I don’t have enough care hours in my budget during the day to get the care I need.

I don’t have overnight care budget for the nights I need care.

Nothing is patient centred.

I feel my voice counts for nothing. I feel nothing I say matters. I feel often forced into situations that cause me harm out of fear if I refuse social care with withdraw care. Example of this was social care forced me to have a care agency, these where untrained, not vaccinated. They had no neurological training. The agency couldn’t meet my needs. The agency then withdrew. Social care refused a personal budget and were trying to enforce any agency they threatened to withdraw support stating they had done all they can for me . - at the last moment my legal team managed to get them to agree a budget. - although I am well aware they want me off there case. I have no autonomy. I feel social care do what they like. It’s not a nice feeling knowing that I’m not protected.

I will end this here.

chiarieds

Let the Scope team know if they have ever emailed you offering support. I believe the email would have been from community@scope.org.uk

If not I will bump this thread tomorrow morning if a member of the Scope Community team doesn't get in touch before me. Just say if you've ever had an email from them.

chiarieds

Bump

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