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Clapping will soon clap out - Carers UK Forum

Clapping will soon clap out

Guidance on coronavirus and a place to share concerns and support
A letter was sent out from the learning disability service stating it was closing due to coronavirus. It was sent to my son who can’t read or write telling him his professional will contact him. Of course, who that might be, is also a mystery, as this Nhs trust service has denied him service for a period of way over 3 years despite him ‘being on their books’. This has been ongoing even with services by the way…for his entire time ‘on the books’.

He has had no proper review of his medication for a long period. Contact being negative in denying him full continuing healthcare at a meeting where professionals who didn’t know him made the decision ‘not to allow’ and not on the basis of qualifying criteria either, but on the basis of ‘not wanting to fund’.

It was a wrongful decision which they wouldn’t allow my challenge.

The social worker at the time did put in a half soaked challenge that wouldn’t have got anywhere. However, I never received the reasons or the decision from the Nhs at the time and found myself totally ignored when asking for it. I wasn’t allowed to challenge the decision myself either. The decision was only given verbally to me and without any proper explanations, as to how it had come about.

They had also delayed it, by over a year, and had messed me around conducting several meetings regarding CHC funding which came to nothing. The situation left me and my son in the lurch, without adequate funding and, even when some agreed funding came through, it was inadequate and underfunded. Allowing only £9.00 an hour for me to arrange some night care. It still remains the same and it is now a few pence off minimum wage and it’s only for 1 carer. When my son needs 2:1 care, 24 hours a day.

It took 2 years and 10 months for the Nhs to arrange and agree on anything at all.

Since the coronavirus and all the restrictions started, not one professional including all the newbies allocated at my son’s 117 meeting, at the beginning of March, have been in touch or in phone contact.

My son is on 117 aftercare. He lives at home where he has personally been restricted to very similar restrictions to what the Government restrictions are right now. As in all his care was forced to take place at home since January 2013 because specialist health and social care services were deemed not to be able to manage.

At the same time also in 2013…his care was cut to 2/3 hours a day, after a local authority assessment and whilst he was at home 24/7. An injustice that was only overturned in 2014. However, some of that injustice was never to be overturned as the local authority decided they would make it their task to prevent this…by giving factually incorrect statements to the Ombudsman…which she decided to use in decision making.

My son’s seizures were detected as temporal lobe epilepsy via M.R.I. scan in 2004, but were deemed by the local authority as being ‘ his seizures are behavioual and not part of his epilepsy’.

I definitely took the issue up with the ombudsman whose answer was ‘it wasn’t them that said it’ but however it was ‘them’ who used it in the statement as ‘findings’ in their decision making. Leaving me with the only way of challenging in the form of judicial review, at my own expense. One I couldn’t afford and they full well knew it.

I also took issue when the new social worker allocation suggested ‘an assessment’ by her, at the recent 117 meeting. The issue is, that her department had issued this statement to an ombudsman. It was also confirmed at that very same meeting by a clinician that it was not correct to say my son’s seizures are behavioural and not part of his epilepsy.

So now the situation is if my son needs any help…go to the local authority. Not very reassuring to say the least.

I have noticed, the first to be affected by closures are the learning disability service. Those are the most vulnerable in society and are left without help or proper service and it has been exposed that a number of health authorities three services (in Somerset, Derbyshire and East Sussex) where GPs have contacted teams to say that they have deemed people with learning disability and should ALL be DNR. No consultation with families, no best interests.

This is the level of the situation apparently.

Those who are caring for someone with learning disabilities and/or autism should be worried. Yet who have we got to turn to…social services? Who also lack resources OR qualifications in the health needs of people like my son.

Also, thank you to the government for not shielding him or allowing any special consideration to the help that may be needed at some point.

My son is 34 years old and has diabetes in addition to his complex disabilities and we have to take risks to get food. Even though he barely leaves the house…it is others who have to join the long queues to get essentials placing the risk of bringing the virus back.

I have diabetes which often goes low…If I became ill who would look after him? And I remember in 2017 a social services manager telling…I could easily be replaced. Not actually so, in reality.

Then again, it’s no use worrying about what might happen. I can’t see the local authority caring less or the Nhs by the way they are closing services for people with a learning disability and signposting them to services who make it up as they go along.

And a big thumbs down to all the Nhs staff who have let my son down for 34 years…and also I massive finger that is pointing in their direction. If as it has been mentioned they are going to decide who to ventilate and who not to…it can be certain people with learning disabilities will be the first to fall victim of Nhs ‘decisions’.

How many will be clapping then I wonder?
Charm,

I too worry about if S falls ill and I can't be in hospital with him, also if he isn't seen as priority by the NHS for a ventilator.

This guidance has been published https://www.england.nhs.uk/coronavirus/ ... -March.pdf

Granted the NHSt isn't perfect and the system is flawed - but that doesn't take away from the risk the staff take everyday to look after people with this virus.

Therefore, I do applaud the NHS and all the other key workers (and I class us all as one of them too. Without us the whole system would without a doubt fall apart.)

I have friends who work for the NHS and friend's with children who do. This situation is a lot worse than were are hearing from the media and many more frontline workers have died than the two nurses we are hearing about on the News this evening. They are risking their lives and that of their families to do so. Also, the other key workers who are leaving the safety of their homes to carry out key tasks and therefore more likely to come into contact with the virus.

Melly1
Hiya Melly, I am totally with you on that, praise where praise is due and those on the frontline have hell to face right now. I respect all they are doing on the frontline and also understand their orders come from above and not them personally. I'm a true believer though, that people who train and work for the Nhs have chosen to do that job. As it happens we all have this crisis which is very serious. However, we all face this right now and have our own personal crosses to bear. Personally I don't care that much about being recognised as someone who is a carer but saying that I have reason to not appreciate that all Nhs workers being allowed to go into supermarkets first and also social workers. I have had a hellish 3 and a half decades at some of these people's hands and I'm less than happy about their actions and the consequences of them. I know not all are the same and that there's good and bad. However, they do work under the same umbrella. I have found these services to be very corrupt during the 3 and a half decades of having to deal with them. I have honestly felt dictated to, demanded of, and persistently bullied...by those who are paid to do the jobs they do.
I have every sympathy with NHS workers, it is horrible this whole corona.

But same with me I deal with caree's who have paid carers who literally go all over the place potentially spreading corona.

I don't have any protective equipment just have to risk it, wash my hands as often as I can.

Everyone is at risk, airport workers, did the virus come into the country via a passenger on a plane and at the time we didn't know about corona.

And I watch those house clearance programmes, a worker getting jabbed by a used syringe, risk of catching something nasty.

I have every respect for NHS workers, I owe my life to one clever doctor who saved my life, if it wasn't for him, I would not be here.

But some NHS staff are just unfair, but I don't think its the staff , its the people at the top, the red tape that is
causing issues that people can't get the treatment and support from the NHS.
And we are just so ignored by the NHS, unsafe discharges where we have little choice but to provide the extra care.
Hiya Londonbound,
Your quote:-
"But some NHS staff are just unfair, but I don't think its the staff , its the people at the top, the red tape that is
causing issues that people can't get the treatment and support from the NHS".

It is those at the top but also those at the bottom dishing it out. I have no respect for that myself.
It's like I have said i took my caree for a flu jab, I asked for one myself, I have chronic long term health conditions and if I get flu would be very ill, cannot care, also chance of passing it on to other vulnerable people.
It is common sense to give unpaid carers a flu jab and now unpaid carers are entitled to free flu jabs.

Nurse said I would get sacked giving you a flu jab, she didn't agree with the rules but would lose her job and possibly be struck off the nursing register.
Another year the Gp visited my caree and brought a load of flu jabs in her bag, save elderly vulnerable going out in the cold etc.

Many NHS staff don't agree and probably get frustrated as we do with the silly rules and many quit due to the nonsense rules.

Some do go the extra mile and yes do risk their jobs telling things they are not supposed to, doing things they are not supposed to.
Like any job, any company I have met good staff and bad staff, you have a bad experience, you think not going there again, you go back and you have a real good experience.
Its when the bad outweighs the good, we get fed up and frustrated fighting the system.
I understand what you mean,

Its a love/hate relationship, many of them do work very hard, but there is a level of discrimination against persons with learning disabilities in the service that the second they pick up the sniffles they should be "let go", they assume all patients are the same yet are out of their depth when it comes to rare/complex health disorders but still disregard input from family/carers who often have the full backing of specialists in understanding their loved ones health.

This is also considering negative experiences, which we often go through with loved ones, stick in the mind over other positive and less eventful ones.

It is such a dangerous time right now for any person with this level of need to be admitted, when you consider how much disregard has been shown in the presence of loved ones, what they will get away with when they prevent a person requiring 24/7 support being accompanied into hospital by their main care giver (even when it is non-cv) for example

Nevermind the risk of them actually picking the virus up because lord knows how many are carriers at this point - you only need to look at the spread through other health services (in countries that were more stringent than us) AND have the PPE/testing down.

Also not agreeing with a course of action which causes another harm, yet continuing regardless, does not cut it. There is a duty of care.

I don't think I have to leave much to the imagination what this stance is reminiscent of. It may be less violent than historical comparisons but this is fast becoming a modern day exercise in eugenics. We knew the undertones were always there, rationing of health care provision has been a thing for some years, its just the legislation/guidance changes have bought it further into the public domain and in their eyes provided a platform of acceptance of such conduct (not with all)

These are worrying times. I am treating the virus situation with every ounce the seriousness it deserves because many of our loved ones and even ourselves are at risk from it, however it is the quality of care provision (or lack of) for vulnerable persons even in cases where they do not have it, which frightens me.
Hiya Honeybadger, What you say is correct. The way I see it, my son came into this world with a lack of oxygen and was birth injured. If he leaves the world in the same way and at the hands of the same people then they will never hear the last of it and I do mean never.