New to Carers Connect - struggling a bit given my age...!

Hello. Not entirely sure I have done all the necessary bits in the right order. I used to admin on a forum but it was many years ago.

I have been caring for my son with severe mental health issues from afar for many years. When I was in Cornwall for nearly 20 years I advocated for him from a big distance, and took charge of the benefits stuff. After the death of my husband 6 years ago, I moved closer to another son 4 years ago, and the son I care for is now easier to reach, and it’s just about possible to do a visit in one day, though at age 74 now, the travel on trains is tiring, and in the hot weather recently I stopped as it went over 30 degrees. My son who I live near is about to move into an area that is very near to my son I care for, and I am trying to sell my retirement flat to get nearer to both sons, but the housing market for retirement flats is very challenging, so it will likely take me a long while.

My son was sectioned for over 2 mths, and I did my best to visit him, as virtually the only person, friend or family to do so. Now he is in the community, while his Section 117 care in the community is set up, (free for people in his situation to help to keep him well and prevent relapses needing hospital care), I have felt it necessary to go as often as I can manage (not more than once a week, and usually 10 days to a fortnight.).

He is still recovering from psychosis, and not finding it easy to leave his flat, or make phone calls or doing anything much. I have been recovering from sciatica, which added to my problems, but thankfully that is now improving after 8 weeks.

Not living with someone who needs care and living about 2 hrs away by train/bus brings its own challenges. I live in a retirement flat and am pretty well in the summer apart from the sciatica which was a new challenge for me. I am hoping that soon he will get some care other than me, and will accept it, which is another hurdle as he doesn’t like or trust many people right now! I have a meeting next Tuesday with him, his care coordinator and someone who is doing a social care assessment for him, and hopefully obtaining some funds from the Council.

He has had Direct Payments for 10 yrs (anyone else got them?), and is not well enough now to run that, but I am exploring ways I can take it over without too much responsibility, as doing it at a distance, will be a challenge in any case.

2 Likes

He needs to learn how to live without your involvement.

I’m the same age as you, our children need to prepare for the time we won’t be around any more. We need to retire from caring as much as possible, whilst still well enough to help with the transition.

If he can’t manage direct payments, tell the council and they should be able to arrange for someone to help.

1 Like

@bowlingbun While in theory what you say might be an ideal, I am talking about someone who is still to some extent suffering from psychosis. Two months ago the psych said it was severe and that doesn’t just disappear in 2 months. He is not in his right mind, though people at the hospital behaved as if he was when they discharged him. He has taken overdoses on a number of occasions. Even one of his brothers has said that if not for me he would likely be dead already. Not only has the State neglected him, but he is quite likely to neglect himself.

The problem with severe mental health like schizoaffective disorder, is that you cannot just take a magic tablet and it all goes away. He has just been rediagnosed from schizophrenia and now he has bipolar to deal with on top (actually he had had for years, but they have only just realised - I knew it years back).

He is now isolating himself, by not replying to the phone from anyone and only very occasionally replying to my WhatsApp messages. The only way I know he is alive (remember, I don’t live near him), is by seeing the colour change on my messages to him. Do you seriously think I am going to succeed in him learning to live without my involvement? I am the only one he trusts right now.

He does have a new Care Coordinator and a team of people who I hope will help him and who he will learn to trust. I am certainly NOT holding on to the role of carer, and happy to give it away, but it will be difficult if he doesn’t trust anyone else. I am exploring a way for my son to have Direct Payments in a different form than he has had previously, that would need minimal work from me if I take over as Authorised Person. It would involved buying in from an agency that specialised in mental health care support, thus meaning I don’t then act as an employer, which I want to avoid, because of the distance and responsibility. If I can get a small team of people who he would have regularly, then that might be acceptable to my son. He is very reluctant to let people into his flat who he doesn’t trust, and that is understandable.

Perhaps I have made a mistake in joining this forum, as severe mental illness is not like a broken leg, or even like a learning disability (though I am aware that too can be complex).

1 Like

I agree entirely that mental illness is incredibly difficult to deal with.

@NellyB hiya Nelly welcome to the forum.i am so sorry for what you are dealing with it must be such a worry for you. I don’t really know a lot about what your son has , but from what you have put. You want to take charge of your son’s direct payments and organise his care and pay for it for him because he is not well enough to do this. You say he has a new care co ordinator and a team of people to help him. Have you discussed this with his care co ordinator and told them what you are wanting to do and ask them if they will help you to sort out care for him and help you to sort out the direct payments coming to you and you paying for the care. I would think they would be able to help or would be able to find out the information for you.,

.also you could try ringing your local citizens advice bureau. You will find there number by type in citizens advice bureau and putting in the area where you live, and have a word with them . Explain your situation and what you are wanting to do and ask for there help . They should have some advice.

You could also ring his council and explain to them that you are wanting to take over your son’s direct payments and pay for his care on his behalf because he is not well enough to do this. Have you got anywhere in mind that could provide care for him or do you need to find somewhere. You could ask the council if they have a list of agencies that would be suitable for providing care for your son’s needs. You could also ask the care co ordinator if they know of any good agencies that could provide care for your son’s needs. Then you could sort out his care and have the direct payments paid to you and you pay the agency. Has he had a care needs assessment to assess the care he needs as he would need one of those to.

I don’t know if this is any use. I have tried my best. I hope that you are ok.

Hi @Teddybear. Thank you for your kind response.
I was doing a bit of shorthand above re the situation with Direct Payments, as it’s a bit more complicated than I explained above.

The history is that my son already had Direct Payments for 10 years before he was detained in hospital for 2 months recently. He already had severe mental illness (schizophrenia) diagnosed in 2009 when he was previously in hospital, However when he came out he should have been a structured free aftercare support system then with a Care Coordinator via Section 117 of the Mental Health Act, but I didn’t know this, and it didn’t happen for him.

However in 2016 I was so worried about him and his lack of self care, that I began to investigate how I could best support him, and stumbled on the Section 117 that I did not know of. The point of free Sec 117 aftercare is to help to support and keep patients well, so they don’t end up back in hospital. I had been trying to find the best way for my son to have support in the community, and I heard of Direct Payments which meant that if he qualified, his Council would fund him to employ someone to act as a PA or carer. Although the process was begun, it began to stall, so I took out a complaint against his Health Trust and won it, with my main request being for them to put the Direct Payments into action, so he had some decent support. At the time he was judged well enough to run it for himself, acting as employer, as one had to do. Essentially I won my complaint, and they provided him with 28 hrs of care via Direct Payments. It wasn’t perfect but with the support of the PA/carer, he was able to stay out of hospital for 17 years!

Unfortunately my son stopped taking his meds in January, and ended up with a relapse and psychosis kicked in, and to cut a painful story short, he was eventually ill enough at the end of April that he was ‘sectioned’ as I explained above. His carer left the job during the time my son was ill and then in hospital, but bizarrely I could not get the Direct Payments paused so there is still a pot of money that can be used for his care.

Apart from the Care Coordinator who I think mostly deals with his medical needs in the community, he should ideally have a social worker, but they are thin on the ground now so he has a Case Worker at present who is helping him in the short term by doing a social care assessment of his needs, which have changed since the same person did one about 2 years ago, as he is much sicker and less able to cope. Next Tues I am going to his flat where she will carry on the new assessment with the Care Coordinator there.

This case worker was going to suspend the Direct Payments, but having had some help from AI to understand what is possible with DP, I researched all the various options, as I hadn’t felt I wanted to take on any responsibility for running DP, as if he had carried on employing one person as before, (this involves interviewing a new person and literally acting as the employer), then for me to try and do this myself at a distance would be v stressful, and a big responsibility, as essentially you have to do all the things an employer does and if it goes wrong, the employee can take you to a Tribunal - no thanks! Not sure my son should have been doing this either, but at the time he was employing a friend and it seemed to work out initially. By the end it didn’t but that’s another whole story.

So when I realised that I could in fact do it without the responsibility of being an employer, by possibly just employing one or 2 people via an agency, I would not have to worry about the employer side of things as the agency would do that. Furthermore his Council have a new scheme where they take on most of the admin side too. I would still need to sign up to be the Authorised Person to sign up to receive the funding, and the Council will want to check me out for sure before that part happens.

Having told the Case Worker of my thoughts, she has immediately decided as I hoped she would, not to cancel the Direct Payments, but for the money in the account that my son holds at present to be used if he needs any immediate care while we work out the rest of the plan. Getting funding is a headache, as she has to go to a panel of people and justify any expenditure, and she was still working on this. I will need to fully understand what I would have to do in the future assuming I take on the Authorised Person mantle, in the meanwhile.

To be honest one of the biggest hurdles is going to be persuading my son to allow someone new into his flat, as at present he is wanting to shut people out. I am hopeful that as he recovers a bit more I can explain to him that by this idea of mine, that he won’t just have a stream of different people foisted on him, but that we can jointly choose a suitable care agency, and that he can express preferences of the kind of support he can cope with. If you don’t have Direct Payments, the only avenue open to you is giving it over to the Council, and then you have no control whatsoever on time of call, who you get etc etc, and it’s a lousy way to get care, and is waht most people get I suspect.

As you say though, I think his Council does provide a list of care agencies that would be suitable, and I have begun to look through them online for when/if the time comes. I will see what the Case Worker has to say on the subject next Tuesday and I can get some advice from her about Direct Payments though It seems it’s all new to her also. I have a link to an online Direct Payments Facebook group where there are real people using DP, so I am going to check that out too, as the people on it have been helpful in the past.

Ultimately, if it works well then I might be able to persuade one of my other sons to take it on if it works out well, and when I get too decrepit to organise it myself, but now is not the time for that yet.

1 Like

@NellyB hiya Nelly you are very welcome.yes I have heard of the aftercare structured support section via 117.of the mental health act.

Does he live in an assisted living flat. Or is it just a normal flat. Who does his washing and shopping and cooking and cleaning. And is helping him and helping him taking care of himself as he is not well and is not coping. If the answer is no one. Then I would ring his council and say he needs an sw in mental health to come and help you sort it out to.

And who takes care of his benefit money. I have heard you can be an appointee for that to if he cannot deal with it you ring the DWP (department for works and pensions ) and tell them that you want to be his appointee and then you can deal with his benefits for him .have them paid to you for him and you give him money.

He does get benefits doesn’t he universal credit because he does not work because he’s ill and pip because he is severely mentally ill. He should get these things and if he doesn’t they should be put in for. Also he should not be paying council tax if you are severely mentally impaired you are exempted. If he isn’t then you need to ring his council and tell them I don’t know if they send a form for you to fill in and send back or they can do it over the phone .they then will write to his gp to confirm this.

This case worker he has is she a mental health one. You say he has a care co ordinator but they only deal with the medical side of things. So who is dealing with his social side of things. If the section 117 says he should have structured free aftercare support system with a care co ordinator. And they are only dealing with the medical side of things then they should get a mental health social worker to deal with his social side of things . I’ve just looked and the section 117 says he is entitled to free aftercare of health and social care support.. what is the case worker doing are they a trained social worker in mental health if not then I would ask his council for one tell them that is what the section 117 states and he needs more support.so that he then has a care co ordinator , a case worker and a mental health worker SW to help with the social care side of things and support him with it.

Don’t let the council take on his direct payments or any of his money I’ve read bad things. Family need to deal with the money side of things.

Also have you rung the charity mind they deal with mental health they may be able to give you some advice or support if you ring them and have a chat with them tell them how your son is.

Also about you living in a retirement flat and wanting to move to be closer to both your sons but you say it is challenging I don’t know anything about retirement flats but I had a thought I don’t know if it is possible. Is it like in a retirement complex own by a company. When you move to go and live near your sons are you thinking of having another retirement flat if so. I wondered if the place you brought it off has a retirement flat complex where you want to move to .so they could buy your flat back and you buy another one from them where you are wanting to move to where your sons are. I don’t know if that is what you are wanting to do or if it is possible it was just a thought I have. But when you sell your flat be careful you are not ripped off or took advantage of with the situation you are in .if you understand.

Now this is different to your son as I don’t have mental health issues but I had an accident .i ended up in hospital for four months. There was a discharge care co ordinator there who was very kind to me if he had not helped me I don’t know what I would have done as I was really poorly at the time. And no one else bothered and he knew I had no one to help me. He came one day with a list of 4 care agencies I had to pick one they were agencies that must have contracts with my council to provide care so I picked one and he sorted my care out I think a hospital SW may have been involved but he dealt with it all. When I came out the carers came and took care of me. I didn’t know at the time that I had picked the best agency for the area I lived but I didn’t not know at the time. I’m telling you this cos you should be able to have an agency that is contracted to his council. If you ring them up ask for a list find one you think is suitable and the council could arrange the care and you pay the agency with the direct payment money you get and any other things that he needs. You deal with the money side, and the council deal with the care side when you picked one from the list agencies they contract to. Also I feel that if this Care co ordinator is his care co ordinator shouldnt they be helping with sorting out his care with you as well as medication.cos there is more to care than just medication.

I have tagged these people @Melly1 and @ula .Melly for info and advice for you as she could know other things and also Ula who has a daughter like your son.

I hope that you are ok. Have a nice day today.x

@NellyB hiya Nelly you said you are going to his flat next Tuesday so the case worker can do a care needs assessment and the care co ordinator will be there to. You said she is new to direct payments I found this information if it is helpful.section 27 aftercare payments cover a board range of needs including personal care, supported accommodation costs and social activities provided they directly relate to his mental health disorder and reduce the risk of going into hospital .they do not just cover personal care .

What can be covered personal and social care ,help with daily living tasks ,domiciliary care ,attending day centres.

Wider social needs social care, cultural such as gym membership and community classes if they help his recovery .

Accommodation and rent specialized or supported living accommodation like supported housing where the house is tied directly to his mental health.

This may be helpful website. Explaining your rights section 117 aftercare mind.

@Teddybear Thank you for your 2 messages.
Firstly, yes, you are quite right Sec 117 does also cover social care. I do know that when the Care Coordinator first came to visit, she did suggest a couple of places that my son could go to, one of which I believe is partly funded by the NHS, run by Mind. However at the moment it’s definitely too early, as my son is retreating from people, and has not been able to cope with groups for a very long time.

I recall from a long way back that sometimes things were funded during a social care assessment that were not just functional - ie about 17 yrs ago we asked about guitar lessons, and it seemed that things like that were possible. Just a few weeks ago I suggested some kind of music therapy as there are 2 charities in my son’s county, but the case worker told me this wasn’t possible. As I have not had time to sit and suggest it to my son, I wasn’t convinced anyway that he would be able/willing at present. I know the councils are very cash strapped, and there was talk of Hampshire going bankrupt a year or 2 ago, so I am guessing that getting things like music therapy through is harder these days anyway. I have let it drop, but if my son showed real interest later on, I would explore it then.

Yes, my son is on the highest level of PIP on both daily living and mobility. I have worked very hard over the years to help him obtain them. He also was awarded them for 10 yrs last time - long story but an assessor behaved very badly and his PIP was lost for a few months but after the Reconsideration taken over by me, we got it back. Thankfully I managed to get a DWP person to see sense before it got to the Tribunal stage. When he went into hospital I had to declare that he was on PIP as it has to stop if they are in hospital over a certain time, and he was in for over 2 months. I have also run to restart it, but last time I asked my son it hasn’t kicked back in yet. I will ring up with him there with me on Tuesday hopefully, as the DWP won’t give me info, but I do know that it’s in motion and will happen, just not the date yet.

It is true that I could be in theory be his Appointee, but that’s another thing I would not want to take over unless it was absolutely clear that he could not cope financially, and even then it’s a big responsibility. It’s a tricky one, as he’s always wanted to take care of his own money and when he went into hospital he was still doing that. and I want him to have as much independence as possible, and although there were times when he was in hospital that he could not cope at all, it’s not quite that bad now he is recovering, though he’s not very good with money at various times.

I did hear recently that even as his Appointee that it would be possible to still have the money sent straight to him, via a joint account. However all the options are fraught with problems and questions, and apparently if there was an overpayment by the DWP, I could end up being financially liable, and just like the Direct Payments issues, I do not want to take on more than I can cope with. When he was in hospital he did end up with a problem with British Gas, but Citizens Advice gave him a lot of help thankfully and that debt is now cleared. I can speak to BG on my son’s account, and on many accounts this is possible, but the DWP make it really difficult, by only allowing Appointeeship and not much else in between. I was told for example when I rang them recently that even if my son sat with me and gave his permission to share info, it would only count for that one phone call. Given that I live in another part of the country, it’s pretty frustrating.

He was transferred to Universal Credit last year, with my help. At that point, I discovered that whereas he had not been paying Council Tax under the old system, that some people were then having to pay when under UC and I did exactly what you have suggested, and contacted his GP myself once I had obtained the correct form from the Council, and he was exempted from paying for it.

Actual real trained social workers are pretty thin on the ground these days and most people with mental health needs do not have one any more in my experience. So councils appear to employ these people like the one my son has who do work for the council and do have some training in fulfilling the case work needed for doing a social care assessment, but when it is completed, they disappear until they are needed again. I think that all the social workers if they do in fact exist these days, are just dealing with the children cases - just my observation anyway.

I just asked AI on this and it confirmed what I have just stated…
Severe Shortages: Councils report that qualified social workers specializing in mental health are among the hardest permanent staff to recruit and retain. [1]

  • Heavy Reliance on Agencies: Because permanent recruitment is difficult, many local authorities rely heavily on temporary or agency social workers to cover statutory duties. [1, 2, 3]

  • Rising Thresholds: Due to tight funding and high demand, council social workers often only deal with individuals facing the most severe or complex mental health crises, meaning early intervention is harder to access.

    So my son is a complex mental health case, and that is why he is getting help, for now, but he has someone who doesn’t have the full training or experience. Going back into the 1970s, I was training to be a social worker myself and thought I didn’t finish the course I know something about it, but things have changed a lot in 50 years, due to financial constraints.

    Yes, I am sure you are right about councils taking over someone else’s money - again they will just do the cheapest and easiest things, not necessarily personalised and not always in the best interests of that person, though on paper it will look legally correct. He would get a succession of people visiting him which he would hate. Unfortunately there is only me willing to take it on at present, and if I become very unwell, and ultimately die I may not have any choice. I have 2 other adult sons and one of them won’t speak to my son with needs (and he lives a long way off), and the other one, would I suspect be very reluctant to help either, but when that happens depending on the circumstances, he is the one most likely to agree if pushed, and he is also just about to move about 8 miles from him. For all kinds of reasons I cannot unpack here though, the relationship between all of my sons is one that neither of the other 2 sons would want to take on the support that I am giving still.

    I have rung mental health charities before. Rethink actually have a good phone in service for advice. My experience of Mind was not so good, but it depends on who is on the phone. I think their advice sheets are excellent, but the reality of helping someone is not so simple unfortunately. People are not robots and if you are trying to help someone who does not want to be helped or have people invade their flat, as I am facing, then it is likely a slow gentle process not one of ticking boxes.

    My son lives in a Housing Association flat. He has been living independently there for 17 years but until January, he had a person via Direct Payments who did his washing, shopping, cooking and cleaning. Since his relapse and coming out of hospital 2 weeks or so ago, there is no one. The council are fully aware of this, and this is why the case worker, who is not a social worker is doing an assessment of his social care needs.

    She began this process in hospital, and in theory I was supposed to be at that meeting, but what with the heatwave, having sciatica, and I was due to see a physio that day for the sciatica, plus the hospitals wretched issues with technology, I couldn’t even get onto the online link to it. I was very upset by this, but next Tuesday I hope if all goes OK, to be in person at the meeting which will be a continuation of the assessment, but in my son’s flat. I have given her plenty of pre meeting info so she has a reasonable picture of how my son is coping (or not coping as is the reality).

    Yes, at present I do live in a retirement flat owned by a large company (Churchill not the more expensive McCarthy Stone ones). My Churchill flat was modestly priced as it is not brand new but nearly 15 yrs old, the newer ones are an eye watering price,as are the McCarthy Stone ones. There are new Churchill flats in the town where my mentally ill son lives, but I do not want to live in that town. I lived there for 20 years and want to go to a quieter more rural village where my youngest son is about to move to in a week’s time. I need support too, and he will help me as I age. However though there is one block of retirement flats in the village, they are much older than mine and are owned by a different company. I did have an offer in on one, that was to be cheaper than mine, but unfortunately the service charges are the biggest issue, and they are a little dearer overall, though not drastically so. I had hoped to at least pay less re the flat purchase, but am unable to sell my own flat, as the whole house and flat sales have ground to a halt and I haven’t had a single viewing. This is universal, but retirement flats are niche, so it’s tricky as buyers have more choice locally and prices are dropping. Mine is priced OK I believe for the brand, but I suspect that many will go for much cheaper ones locally at the moment, and I need to be cautious about dropping the price too much.

    I am sorry to hear of your own situation, and thank goodness there was one person in that hospital who did help - of course the hospitals need to move people on, so they employ people like that who know the system. I find it interesting that the hospitals that deal with physical health cannot just shove elderly/vulnerable people out to their homes without a a structure of support as you were given, but when I tried to oppose my son’s discharge in a mental hospital on health and safety grounds of his flat, all hell let loose (in the discharge meeting). All I was asking for was a risk assessment based in part on the temperature in the flat, and that no one would take on that responsibility. I am still dealing with that, but the hospital did shove him out, and he has been living in temps of 33 degrees at worst and nobody cares. Their Discharge person and the psychiatrist repeatedly said it wasn’t their responsibility, but it was the Housing Association, and this was only partially true. I even opposed it based on my legal position as ‘nearest relative’ but they overrode me.

    Privately in an email the case worker from the county told me that I should take out a Safeguarding Alert which I did, and she told me that if anything happened to him then it would be the responsibility of the hospital. I am still trying to deal with this whole issue of heat control with the Housing Association, but I can only deal with so much right now, and I just have to let things go from day to day, but I will not back down on it. Actually it’s a universal issue that the Housing Associations have now got to grasp, apparently since Awab’s law was put in place last year, but I am just fighting for my son, I can’t fight for the whole country! ie there are things that can and must be put in place in some properties to reduce sun coming in, such as solar film and the HAs are responsible if the person is vulnerable.

    So my son was shoved out back into his boiling flat without that support put in place, and the caseworker was honest with me in telling me that it would take time to set things up, hence me finding myself in this situation right now. Yes, it is in hand, but at present my son is doing some things, but when I visited him last week he was doing a lot of staring into space. I did one visit where I defrosted his freezer, and helped him with 2 phone calls, and did some shopping. In theory he can make it into the big supermarket next door to him, but it’s a challenge for him to do. Apparently he did make it into the pharmacy to get his meds, but all of it is a challenge, and if he doesn’t let the care coordinator in then that adds to his issues. She was due to go in yesterday, and she said she would let me know if he didn’t let her in, and as I didn’t hear I am hopeful that she got in!

    So the care coordinator is doing her best for him, right now, but it’s not easy. She is going to be at the meeting on tuesday and is visiting for a depot injection. I have agreed to accompany my son to a psychiatrist meeting in about 10 days, as the CC is on leave, but as this is all a 4 hr round trip by public transport on a good day, (and the trains are constantly in chaos on the return journey meaning that it’s often an 11hr round trip as I stay for a few hours to help him with things). Last week I averted 3 crises, one financial, one medical, and one social, by visiting, as if I hadn’t done 3 jobs my son would not have received his meds, would likely have had £200 taken from his account that he couldn’t afford, and his freezer might have ceased to work if I hadn’t defrosted it.

    The case worker and the care coordinator are painfully aware of how much I am doing for my son, but the system creaks on relying mostly on families, and some have no one at all, and then they wonder why they end up back in hospital. There are lots of issues tied into all of that, that I won’t go into here, but when my son reached crisis point, I had to get him to actually ring 111 and ask for help. In theory if he had not rung 111 himself, then they might quite likely have said if he is not asking for help himself then we cannot do anything. Even if I had as nearest relative insisted that he had an assessment there was no guarantee that he would then get help if they judged him to have ‘capacity’ and that is such a bugbear for relatives who are not coping, as the whole concept of capacity gets used to avoid giving people with psychosis the help they need. Lucky for me, my son did ring 111, and agreed to the Crisis team going in, as even though 3 weeks on he disengaged, there had been enough contact for them to ask for an assessment of him by then.

    Thank you for tagging in other people and giving extensive advice. I am pretty clued up and well educated and can use the internet well. It’s a very hard world out there now for those who are vulnerable and alone.

Just edited my post and hoping I removed 2 things that prevented it being published. Other than what I removed, apart from the length, (sorry but was trying to reply to replyer’s points) not sure there was anything else that was inappropriate in there.

1 Like

@NellyB i will read it now.its ok the programme is very sensitive it reacts to words.

@NellyB yes it is a hard world Nelly you are right there. I glad that the care co ordinator and the case worker are at least trying to help.i was told that people don’t have social workers all the time now. But if anyone needed one and needs help you can ring up and ask for one. I am glad you have a lot of things sorted for your son. It’s now just getting his help and care reinstated and hopefully when they get that updated care assessment he will get that to. And things will be easier for you. It may be strange for your son at first but then he will get to know the people and they will get to know him and what he likes and dislikes, and hopefully he can cope with it. You will have to encourage him that it may be hard at first but that it will get easier and make his life better.

Thanks @Teddybear
It’s all a bit of a slog right now, and a lot hinges on 1.the meeting on Tuesday, and 2.how my son reacts to the idea of having help now that he is home.

Apparently during the first social care assessment meeting he said he wasn’t sure if he still wanted Direct Payments, and he said similar to me soon after, but I doubt anyone spelt out the possible long term implications to him of not having help. They are very hot on choice and giving the person autonomy, but if that person doesn’t have full insight into their condition, and be able to consider how they will manage with all kinds of things, from helping with phone calls, to defrosting the freezer, to reading the meter (in 2 separate places down 2 flights of stairs) - all these being things that I have done in the last few months, but may not be able to do ongoing.

If it is possible for him to imagine a better future with someone he will get to know and trust then it might work out.

As for me, well I also need some reassurance that I will be given some support in using the basics of Direct Payments.

1 Like

@NellyB yes I see what you mean it’s all about the meeting on Tuesday and then you will know more. Does your son like where he lives like his flat. If he does you could try and get him to understand that having people to help him and you is the only way him and you are going to manage that he won’t on his own and that you cannot do it all and you need some help to help him.that it’s important .

About the direct payments I don’t know a lot about them but I think they pay you the payments and then you pay the care agency.. and then the rest of the payments you would use for the things he needs. I suppose the agency once everything is sorted you would be able to set up a direct debit to pay them each month. Don’t let council handle money I once read a post on here someone had posted I don’t know all the story but there relative had care etc. I think it was with the DWP and not the council but I’ve not heard good things about them either. But there all the same to me if you know what I mean. And this person I read the relative wrote a post that the person had an appointee from the DWP that was supposed to look after his money etc. something happened not sure what but it came to light that the person had no money in the bank account and should have had thousands of pounds and the DWP appointee had been helping themselves and spent it all. The relative wrote this post about there relative(the person that had had it done to them.

And you say you hope you get support to manage the basics of direct payments. You could also ring your local council and ask to speak to a SW that you need some help ,advice. If the case worker and care co ordinator don’t know what they’re doing. I was told if I needed a social worker all I had to do was ring and ask for one. That people are not allocated them all the time now like they use to do .but if you need one you can ring. You could to understand how it works so you know and what you need to do.i would ring your local council ask for one to ring you even come and see you talk through it all with you. Cos once you know what you’re doing I’m sure you will be fine. You just need someone from the council who knows all about them to explain and be there for support if you need them. And also I would check the hours that these people (carers) are doing to make sure they are doing them and that the agency are not overcharging you for care he has not had. I’m not saying they would do. But keep an eye on that the agency are only charging for the care they are giving and not overcharging. I’m sure you would get the hang of it, and I’m sure if you rung to ask a social worker to explain it all ,and then to support you they would do.

Your son should be given a choice of directly commissioned care, Direct Paments that he manages, or Diect Payments that someone else manages on his behalf.

@Ula has an adult daughter with MH problems. You haven’t come to the wrong place. @Charlesh47 any wise words. There are a few on the forum with similar problems. @bowlingbun has a huge amount of experience and advice and is the kindest person. I know she meant no offence. ( hope BB you don’t mind me saying this ) We all wish to support you in this difficult situation. We never criticise as we all can empathise

2 Likes

No offence taken. I’ve suggested to my eldest son who lives with me that we do as little as possible this weekend to recover after a pretty hectic few weeks out and about with our traction engine. This week I can’t speak very well, just croak as the smoke, dust and heat conspired against me and my throat. M will be at his flat so I might just get some sewing done.

1 Like

@NellyB hiya Nelly ,how are you doing .how did the meeting go. Did you find out all things you wanted to know and sort things out. How was your son did you manage to get him to understand and agree to things.i hope that he did. I hope you have a nice day take care.

Thank you for asking @Teddybear I will reply properly later tonight or tomorrow as I have 3 free days … this week been a bit full on as I do volunteering as well as the rest! Did I also say I am trying to move house! that’s another story and rather glad no one has looked at my flat, as only so much I can cope with right now.

All OKish, apart from the DWP who really have p…me off, having tried very hard to do the right thing, but no surprise really with them. Got through the meeting though it was 2 hours, and I have some doubts about some of it, but thankfully the AI Bot and my own instincts kicked in beforehand, and was able to discuss something with my son before the meeting thankfully. It’s hard to know who to trust entirely, and I bear that in mind.

Every time I go I sort out another small bit of the puzzle for my son I hope. His room was like a sauna when I arrived…32 degrees, and he hadn’t opened the window. I did that and put an ice block into his air cooler and filled it with water and got it down to 30 before I went. At least the case worker could see what I was on about I hope in general, though he said all the ‘wrong’ things to the questions which I know are to measure how much he can do. I felt I had to write to the case worker after to point out that his condition fluctuates and if he says he has a shower every day (when before he went into hospital he hadn’t done so for 17 yrs and probably went in once a week sometimes) then we don’t know how he will be in 6 mths time.

I am a bit more hopeful that we might be able to sort something out for supporting my son though, as he was agreeable to my suggestions and even under pressure from the caseworker to accept commissioned care, he didn’t buckle. I was able to say more than once how much he would hate it, and he didn’t disagree with me. I have agreed to be Authorised person re the Direct payments and then to research the care agencies, so that’s my job this weekend.

2 Likes

@NellyB i don’t trust anyone from them places Nelly. If caseworker is saying the wrong things ask for social worker you can ask for one if you need one. I use citizens advice where I live for lots of things .I don’t know if it’s different areas but they have always been very good where I live. I do know if you have any complaints or you dont agree it must be the same for your council as mine .go on your councils website on complaints you will see email address you write your complaint send it . That goes to the quality care team. Who then will send it where it needs to go what department. So if you have any doubts or things aren’t right and they don’t sort them write to that email address and tell them everything and they will pass it onto someone to look into it all. It’s obvious he needs help and you need help to help him. About care agencies try asking around.do you know anyone who has care ,or anyone you know who knows someone who has care where your son is .Are there any places like hospices, or disability centres or care centres that are near your son locally where you could ring up and ask if they know a good care agency sometimes it better to ask people around his area to get to know what is good or bad. Reviews online you never know if there truthful or not. Asking around ring where he lives may be better. Just a thought.your sons condition fluctuates then they need to take him at his worst then they know it is covered. Glad you are doing ok I thought about you . Take care.