Have to wait too long for help.

Hi, sorry for posting so much on here.

It’s a difficult one, mum has finally had an assessment and the social worker determined that mum needs assisted living accommodation. Great.

Here is the big issue I have rung the extra care team who say that there is a massive waiting list, and it could take years to get anything. Apparently their services are too stretched at the moment.

The people actually had the cheek to say to me “a place will only come available if someone dies.” That is just not good enough. What happened to all the money that gets paid into social care?

I don’t even know if it can be bumped up.

I am now extremely scared and it’s causing me massive upset. I am having more frequent panic attacks at the thought of this. Im so scared that they are telling me I have to put my life on hold until one comes available.

The social worker is fighting the corner but has agreed that she is on a different team. I have since rung her back and told her and she is going to make extra steps.

Has anyone experienced similar, can assisted living be bumped up. I really need this I have my ducks in a row carers assessments, doctors letters and everything. I have contacted my MP too. Not enough services is not an excuse?

1 Like

It is always the case that spaces only become available if new places are built, or someone dies.
This is why I recommend people to investigate care homes in their area if they like them, and put names down asap.

The social worker cannot just leave it like this. She MUST now make interim arrangements, lots more help in the current situation. If she is from the wrong team, then you need one from the right team!!

Thanks for your reply. I am going to call the social worker tomorrow. I had a carers appointment today and got some feedback and stats which I may be able to send to her. I cannot wait for it. I don’t even know if the list is based on need at all. The social worker has said that she will be putting in a thing for a occupational therapist to inspect the home now which may be able to help. However I don’t know how this will impact the assisted living application.

It will be a stop gap until a vacancy comes up.

Don’t apologise for posting a lot in this awful situation, you are amongst others who understand.

I don’t have anything helpful to add other than to say post as much as you need for support you need.
Good luck tomorrow.

Thanks, it is good to know I am supported. This whole situation is very tricky and scary. My panic attacks are getting more frequent and it’s affecting me in so many more ways. I find I’m getting really panicky in new places. I was with my sister a few nights ago in a shop, I just couldn’t cope in the shop. I wanted to leave. The queue was taking forever making me worse. I had the same again in a different shop this morning before work when I was picking lunch up. Going to somewhere like this can render me useless for the rest of the day it’s that tiresome. Luckily I go to work, and my work is one of the places I consider a safe space, so it helps.

I keep trying to explain this to people, but it’s to no avail. It feels like I’m having to make my world smaller so I can manage. But the world isn’t so adaptable.

I just think all this could have been unavoidable.
I am trying to see if my mum can be bumped up the waiting list for this extra care housing, or if something half that can come up in the meantime. I just think this will be 75% to the end all of the issues we’re facing. Social workers agree, medical people agree. The matter is this waiting list. I don’t know how it works and if it can be bumped up to be given more priority.

No advice but good luck

Hi, so I have contacted the social worker and submitted a complaint to another team. I seem to be getting nowhere and its absolutely frustrating. They keep refusing to give me a straight answer on how long someone can wait. It is shocking that we are in this situation. People are in need now, and not the future. The person I spoke to agreed with me that the person from the Extra Care team who rang me should not have said what she did, however she went on to defend the worker saying she was just giving me a harsh reality. I am sorry but I still should not be hoping for the death of people to get somewhere. There would be uproar if the NHS did this to patients in need.

I cant fault the social worker she has really tried, but its the long waits that are just totally unacceptable in this country. I am now extremely worried. My mum has been told that she is going on this list, and now she in her mind has taken steps to de-clutter the home thinking it will be soon. How do I tell her she may have to wait years for this? They too have got her hopes up and its just wrong. She will be susceptible to the strain of having to wait this long?

No attempts have been made to help me in the mean time. The carers support services have literally offered me a carers card, how is that supposed to help?

I am also fed up of them putting it across as a mental health point of view when what we are really dealing with is a severe case of someone who was abused as a child. My mum has never learnt to live a normal life, I don’t even think she herself understands herself. Yet she is supposed to understand.

If you feel you can’t go on waiting for a long, long time, then residential care is the other option.
It may be the better option if mum has never learned to live properly alone.
Everyone in residential care has their own room, and staff to help whenever needed. Best of all it would give mum other ladies of a similar age to chat to, opportunities for days out or events in the home to give her something interesting to think about. I used to visit many care homes a long time ago, some were lovely, where I could happily have lived.
When looking for somewhere for my own mum, that was always my “benchmark”.
In some ways a care home would hopefully mean that it would be mum’s last move, whereas if she was in supported living, she might have to move again if it didn’t suit or couldn’t meet her needs, now or in the future.
You are stressed out, so why not consider mum having a couple of weeks in respite care, with a view to a longer placement?

You have to focus on what mum NEEDS, because what she wants, having you as her captive personal slave for life, is not an option.

Thanks Unfortunately, mum is not of an older age as she is just in her late 50’s. She needs operations for her disabilities but they wont come until she is 60, so she has to suffer until then. Also, she is kind of independent, but just needs the help to be. The easiest way to put it is she does not have essential life skills and her conditions prevent her from doing anything about it. However, the trouble is Social Services do not understand this. At the moment the house is a major factor in her abilities, the house is too big, and its too much of a trigger for her complex mental health. She is too scared in it.

My sister also has a deteriorating eye condition which could see her become blind in the future. I already partly help her. She cannot help

The trouble is also about how the social housing is run. Its one thing to say it is a come and go service as circumstances change, but the place is run with other needs in mind. The place is not catered to people above 55 like some are, but somewhere where people with learning difficulties live. Alot of people there are people who are in their 20’s. No one is making attempts to build anymore here either. Too many housing developments but none to suit people.

Then really it isn’t a suitable option.
What operation is mum only able to have after she is 60? That sounds odd.

Hi Coolcar - I’m assuming it’s a hip replacement or knee replacement they’re holding back on, as they only last about 10 years. Is it that, or something else?

It is a knee replacement she needs since she has quite bad osteoarthritis in her knee and her back. The diagnosis about her back is still new. She has had a condition in her knee for years. She had an accident about 15 years ago which damaged her knee joints quite badly. It has progressively got worse since then.

She is supposed to have regular injections but since the hospital changed who does them from an hospital appointment to a GP mum has to wait longer inbetween each one. The pain she is in is also one of the reasons why the large house is just not suitable anymore.

As for operations, yes it’s true that they wait till after 60. I’m not too certain on why, but I believe that as @charles_2112 said it’s because they last only a certain amount of time. Yet that is four years away and a long time for someone to wait. I got peed off about my referral taking nearly a year.

I have two knee replacements, 5 years after a car accident. I was told to wait as long as possible, but during the 5 years, I lost so much fitness that I have never regained it. A friend had two in his 40’s. Maybe time to ask for another assessment?

Services are pretty bad in my area.

I am just struggling so much lately, and I have barley any fight left in me anymore. My relationship is on the edge of being over, my boss at work is messing his staff around all the time and creating unnecessary stress. He wants to sell the building and move us somewhere else nearby.

My partners family are also selling their home and want me to leave after Christmas. I only have the choice of being homeless or going back home to contend with.

I cant afford to get a flat or anything, but as far as the council are concerned I earn too much. I am over the threshold for any help or benefits. My travel costs are also too high, and I refuse to give up my job. Its kind of the one thing that keeps me going. A raise is never going to happen with my current boss. There are no other jobs in my field closer to me, I was lucky to get this one.

So in reality, I have no choice but to go home without any support whatsoever. I am so depressed. I just want to run away from it all. I cant do this anymore. I am fighting for my mums mental health, but what about mine. Above all I am having panic attacks all the time.

I have tried asking for help but nothing is forthcoming. The carers assessment turned out to be useless, only resulting in being given a carers card. Everyone keeps saying the council will help with housing, but I have tried that route they wont. Even a person in need has extremely long waits.

I have contacted my GP. I cant go any higher on medication. Councilling services are completely none existant. I get told ring lets talk, I ring them they say go to mind. I ring mind they say go to lets talk. I go back to lets talk, I get told ring your GP. I ring the GP to be told go to lets talk. I ring lets talk again, okay this time go to the mental health liaison team. I had to wait a month and half for an assessmnet to come available, only for them to say have I tried going to mind or lets talk. I haven’t got anywhere in months.

I have explained to social services all this to no avail.

Seriously, I should try your MP.

In the meantime, talk to the Helpline here and see what they can suggest.

Ask the GP to recommend a private councillor.

Unfortunately, I cannot afford it. My travel costs are too high and I’m just surviving as it is.

I am personally getting more and more fed up of my mums behaviour everyday it’s getting extremely concerning she is behaving like she is emotionally unstable. Social services just keep going “oh well, mental health.” I’ve already explained a barely trained teenager at the crisis pad is not going to solve this, but they don’t listen. I am fed up of having to call ambulances whilst at work for her only to be told they are just too busy. Too right they are busy, yet it’s is still reccomended by social services.

I keep explaining that she just doesn’t have the mind of a functioning adult due to the abuse in her childhood. It’s like these stories you hear about in documentaries, kids that are abused in certain ways leading to them never being able to live a normal life because they lack the skills. We’ll that is the same with my mum, she never developed. However because social services see her as having working arms and good enough legs, she does not need help.

She just can’t seem to do anything for herself.

If you don’t put the light on she will sit in the dark. If you don’t make her a meal she won’t eat. If you don’t entertain her she will sit alone. She does not think once to put tv on, or read or book. Engage, go out, or anything for the matter. She just sits there and waits for my dad to come back from the dead.

If you go out your leaving her, and she will threaten suicide. She wants someone to sleep with her and take her to the seaside everyday and buy her everything she wants then take her for expensive meals every night. It’s just impossible.

Yet, I have cried and cried about this to social services multiple times but they say that since she can physically do these things there is nothing they can do. Can’t and won’t are very different things though.

She recently had an OT assessment done to asses the house, even they said a lot of her needs are mental health related though there are physical needs.

However social services won’t take mental health seriously.

I wish I had answers for you, this is too much on your shoulders.
Please email the Carers UK Help for any help they can give you.

Carers UK information and support
Our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)

Also have you been in the MIND website?
It could be worth contacting their helpline too and having a look around in their forums for more help there as well.

Hi thanks for your reply I have just had enough of it all. Everything is such a massive shambles. I am sick of fighting every single day for things that I shouldn’t have to fight for. Basic needs aren’t being met whatsoever.

As well as my mum I am now having to fight once again for my own health. I spent months fighting to get a proper diagnosis of a certain health condition. I had to wait nearly a year for my referral and even then I had to contact an MP to help. I got my referral at the start of November. The consultant immediately put me on medication for it and gave me some tests. I was only given a months supply of my medication. Now it is coming up till the end of the month, and I only have a few left. I have contacted the secretary who told me the letter that would be sent to my GP, but he hasn’t signed it yet, they are also still waiting on results. They also told me that there is a huge backlog of these things to go out. There is nothing I can do now about my medication until they have sorted it. So I have to carry on without it.

Why does everything have such a long bloody queue, and why has everything just suddenly become so difficult?