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Is this acceptable in this day and age? - Carers UK Forum

Is this acceptable in this day and age?

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It has been almost 9 years since my son was subjected to an unofficial lockdown of all community services.

Since January 2013, he was prevented from taking allocated respite at a specialist health unit. They claimed he couldn’t be managed and he was punished for a short-staffing situation on the unit at the time of his very last respite there.

There was no choice of dates for the respite as the manager allocated each of the client’s respite on a yearly basis. Apparently, during his last stay, the client mix was also incompatible. This wasn’t his fault, but he was still subjected to the punishment of no further respite services ever again.

The same went for community day services which were only tried for 3 part days before the service run by health had decided that they weren’t prepared to follow any guidelines in place, and so they just stopped the service without replacing it. Or even trying to find an alternative.

They knew fully they wouldn’t be able to find an alternative, as many day services had closed down. The one he was allocated by health was the only one available. It was a specialist healthcare day centre.

It was a set-up by health, in order to discriminate against my son’s disabilities. In particular, autism and learning disabilities. Coupled with uncontrolled seizure activity it was the perfect excuse to get rid of their responsibilities by blaming ‘the client’.

Lack of toleration was mentioned by none other than his own consultant at the time, whose actual words were ‘zero toleration’. That was actually worse than the fact there was a complete lack of toleration being transferred by a consultant working in the field of intellectual disability and that is not the only method of transfer he used either.

All of my son’s health file is being prevented from view and has been the entire time he has been under a learning disability team. When he was a child, I was totally ignored when asking to see his health file. The ignorance continued until he was an adult…and still continues.

When he became an adult the service (if it can be called that) made it more or less impossible to properly view his health file. The fact all of the years I had been seeing visitors and speaking to them has made no difference in allowing me to view the files. There is an encouragement given to professionals to write what they like within his health file, now he’s an adult.

It continues and affects the treatment of my son. He isn’t getting proper health care and that is in every respect. No effort is being made by his ‘team’ to ensure his health is respected and furthermore, it has been like this all along.

My own son has suffered discrimination against his disabilities for a quantifiable amount of time stretching into decades of his life and it still continues to this day.

His medical situation, including uncontrolled seizures, is still present with no outcome or assistance from his ‘team’. They (the nurse and consultant) claim to have alerted my son’s G.P. of the restrictions on his ability to manage any in-clinic appointments, but there is actually no evidence from the file writings, so far, that any action has been taken at all to convey this.

If anything the file writing suggests that it is a choice of his ‘not to attend’ and regularly this is written as a reprimand towards my son and in order to misinform other health professionals. He has been criticized for failing to attend, more than assisted in doing so, as there have been no suggestions of any help for this problem. It is a phobia and not a deliberate act of his choosing. So the lockdown of services now includes any proper medical assistance as well as no community services. It’s been like this for decades.

The reason for most of his present phobias has been the initial lockdown of community services in early 2013 and the refusal to include any on-going community services all through his life. No outlets were ever properly made available to him by health or social care. Or education.

None has cared a jot about the outcome for my son or considered the long-term impact, which has now taken place. Caused entirely by a lack of tolerance by professional individuals who have had the responsibility of his special needs the whole time, but failed to constructively tailor a package for his needs earlier in his life and now this spills over into the here and now, his adult life.

My son is a young man of 34 who has been locked out of services not just through the unprecedented circumstances as is occurring to many people with learning disability/ autism and more complex problems through the closure of essential services. It is not just a case of services closing down due to COVID-19.

It is a case of a whole lifetime of ostracising specific members of the community who are disabled and health and social care are using poor excuses to do so. Now for many, this includes continued closure of community facilities to prevent usage. In particular, this is an exclusive measure taken towards keeping services for the disabled closed, and with the poor excuses continuing from the health and social care to continue to do this.

Government-led, of course, by the creating of the Coronavirus Act., right from the onset and at the beginning of this present pandemic.

Social workers and health staff have taken this to mean they are entitled to exclude the clients with learning disabilities, in particular, from most services and support networks.

In my son’s case, this has been going on for decades of his life prior to the pandemic, and all is now known excuses excavated from this pandemic situation, now used very much, to disadvantage the disabled and their carers. In order to suppress and damage their quality of life and excuse professional responsibilities towards clients needing to use health and social care facilities.

And health and social care management know fully about the consequences of continuing with this structure. It’s just they don’t really care because they will always have the professionals who are readily available to blame the ‘service users’ for any consequences.
Services gave up on my son many years ago now and it continues to be the case all the way through 2020.

During this year, he was allocated an advocate and come the end of this year he is now denied any advocate service, on the basis of ‘them not being able to see him’ due to the current COVID-19. I have been offered an advocacy service for myself as a carer, even though I can’t actually ‘see them’ either due to the same reason.

The fact remains, that my son couldn’t see them before COVID-19 and was delayed an advocate by the services themselves (as the services) have to refer to advocacy and didn’t trouble themselves to do so for my son, for a considerable several years.

Covid-19 is now proven to be the latest excuse put forward by the services to prevent support to people like my son who are disabled through no fault of their own.

The most awful part of this is the services for people with learning disabilities are getting away with not providing services and there is nowhere to turn for people like my son who aren’t receiving proper health support or social care support.

I am still awaiting an outcome of my complaint sent to social care in July this year.

Here are the details of the complaint element plan.

The complainant alleges that her son did not receive any support or contact from his allocated Social Worker (A H) during the COVID19 lockdown.
The complainant alleges that she emailed M W on 24/04/20 requesting a change of Social Worker and help for her son during lockdown, due to no response the complainant emailed M again on 22/06/20 however, to date she has not received a response.
Desired Outcomes

The complainant would like another Social Worker allocated to her son.
The complainant would like an explanation as to why it was felt ok for M W to ignore her emails.
The complainant would like an apology for no response being provided to her emails and for no assistance being provided to her son during the pandemic.
Since this complaint has gone to the social care internal system, it has remained unanswered by the Group Manager. By the way, M.W. is the team manager who I complained didn’t respond during the main part of total lockdown.

It is a cut and dry situation. Neither social worker or team manager responded to my requests for support for my son during the early weeks of the pandemic. The Group manager was supposed to give an answer to this within 20 days but has failed to do so and by doing this has also failed to rectify the matter. I still haven’t been answered by the team manager.

I have received three emails at the rate of 1 a month since August which makes excuses for delay and to assure me my complaint is being taken seriously. Not so seriously that the team manager has even yet replied and the only contact with the allocated social worker who never met my son was when she was due to be taken off the case. A case she was responsible for but declined to actually work on it.

During the whole of this pandemic my son has had no access to an allocated shopping slot or any real assistance others have been getting throughout or for some part and it’s all because people with learning disabilities who are complex cases are the last port of call for any assistance. He hasn’t even got an allocated social worker right now and his ‘health team’ consisting of just two are about as useful as a chewed-up toffee crunched into the ground. If anything they are out to prevent help rather than give it to the likes of him. Someone who has complex disabilities isn’t top of the list for assistance even in an emergency.

Even the dentist working for health who said he needed a cracked tooth taken out (that wasn’t causing any pain) hasn’t bothered herself to follow-up on her plan to get him into the community dental clinic. This situation has been on-going for a number of months now and total silence has followed for at least 4-6 weeks.

My son has diabetes, but he or myself nor his carers have been offered the standard blood sugar monitoring kit for him, let alone any lancets to conduct a blood sugar reading. The last consideration or concern is given towards blood test results and reviews for his diabetes, purely because he’s disabled.

Leaving him with uncontrolled epilepsy is also not an issue for his health ‘team’ consisting of a consultant practicing in intellectual disabilities and a learning disability nurse who don’t appear to care at all according to their lack of action on resolving any matter for him. If anything they are both contented to sit back and use the delay button as often as is possible and would not act to assist him unless their jobs depended on doing so.

Obviously, there is so little concern from the current pair’s managers over the lack of assistance. So much so, that they have the green light given to both to continue to ignore my son’s health needs, as and when they choose.

As for the referral to neurology, how can that department make great decisions based on the current health team’s correspondence? It’s not as if the correspondence is even some way towards being accurate because it isn’t. It’s all based on the previous consultant and his laziness in really hearing or listening to all the many meetings he had to discuss my son’s health and how he ignored all that was said, replacing the whole situation with his own wrong assumptions. It was deliberate, I believe.

He also got the situation so wrong but continued with it regardless. All in the name of carrying on in order to cover-up the wrongs done at the very beginning of my son’s care with the health Trust. It didn’t matter to him when he was berating my son behind my back, making life for my son to be as difficult as possible. He was such a two-faced piece of work, with one thought only of himself and his position within the health Trust.

He didn’t care about the hell he caused and would continue to cause by what he was writing about an innocent young man with complex disabilities. One who couldn’t defend himself.

And the result is from all this is, that he doesn’t even have a health team or health system in place, because the truth is, his life doesn’t matter as much as if it would if he wasn’t disabled.

Obviously, this is acceptable so long as it's happening to someone else and their family.
Maine,
I have read both your posts, but really don't know where to start.

Are your son's paid carer workers still supporting him? If so, perhaps channel your efforts into getting his diabetes checked and his epilepsy meds reviewed. You will wear yourself out if you are battling everyone all at once.

Melly1
Hiya Melly, I have had both done, had his diabetes reviewed and his medication. The problem is impossible barriers are being placed in the way by demands of in-clinic appointments he can't manage because he's housebound. I don't like the way the situation is of having to fight these people but what else can I do when nothing is moving forward and he is just rotting in the very same position. You've seen the video Melly, it's day in day out...year in year out with him like this.
I have the same issues, i live on an estate, a lot of disabled people and the health and social services don't care a jot about their health and welfare.

You are given a basic care package and that's it, and although many do have complex conditions that if they are not monitored can get a lot worse, no one monitors, no one cares.

They are just i think is it the correct term just left on the scrap heap.

There is all this government waffle that the disabled should play an equal part in society, should be able to access the right help and support to live a "normal life"

But everything has been cut, its not what you need, its what's available which isn't much.

Services should be planned around the patient/client but services are planned to the convenience of paid staff.

That the carers don't work late as it is unfair on them, they have a right to a family life, forcing disabled people to go to bed at 4pm, as there are no care slots available any later.
The disabled are left to be get worse and worse, the GP can't visit, forcing someone ill and no transport to beg a lift down to the doctors.

And social services well what can one say, useless is one word but i can think of plenty others.

The health and social services should be working together to provide comprehensive support, but there just

is very little support, no extra help, no respite no holidays.

Any extra help and support you have to pay for it yourself and that's it.

It shouldn't be like this but it is, the government and just starved the NHS and Councils of appropriate funding

plus written pages of red tape to stop the disabled having a normal life.
Hiya Londonbound, What it boils down to is neglect from services that are meant to be responsible and staff that are paid a wage to assist, especially with healthcare and social care needs. In most cases, they are deliberately not helping and adding to it by making things really hard or even impossible. Dare anything be said to them or the service they simply don't like it. Nothing would need to be said if they were operating a fair service to the disabled.