Cerebral Palsy
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Have a newly qualified SW trying to change a long-standing care package. She has no knowledge of CP

BigSis1BigSis1 Member Posts: 7 Listener
edited July 19 in Cerebral Palsy
Hello lovely people. I m not sure if this the right forum but I m desperate and don t know where to turn for support/advice. Basically on behalf of my brother (it’s just me next of kin). Suddenly we have a newly qualified SW trying to change a care package that’s been in place for no less than 17 yrs !!!! She clearly has no knowledge of cerebral palsy etc. It’s a nightmare, it’s caused him so much stress and anxiety already, only had the meeting on Tuesday. I m looking at everything care act etc. Just be good if anyone else has had the same experience. BigSis1
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Replies

  • woodbinewoodbine Community Co-Production Group Posts: 4,393 Disability Gamechanger
    @BigSis1 good evening and a warm welcome to scope, sorry I have no experience or advice to offer, but I would suggest you check back tomorrow and see if anyone has.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • chiariedschiarieds Community Co-Production Group Posts: 9,077 Disability Gamechanger
    Hello @BigSis1 - & welcome to the community. I'm sorry for the lack of understanding with this SW, & the stress that this has caused your brother, & I'm sure yourself. I'll ask Scope's Cerebral Palsy Specialist Information Officer to see if he can help, but it won't be until Monday. @Richard_Scope please can you offer any advice here, thank you.
  • janer1967janer1967 Member Posts: 11,043 Disability Gamechanger
    Hi and welcome to the community 

    Can you get any help or guidance from his gp or maybe cab could help 

    I'm not very familiar with care plans bit hopefully others may be able to help 


  • BigSis1BigSis1 Member Posts: 7 Listener
    Thank you specialist information officer would be brilliant. I m gathering as much information as I can. An update from the agency, we are so lucky to have them, they have been really helpful.

    The agency manager has said his contract is a day time contract anyway, so has no idea why they are concentrating on night time needs, for example 7-7, they are classed as live in. As they stay overnight. Not paying bills etc, get basics bought like bread milk tea coffee. It’s good that he has settled nights because if they had to keep getting up at night he would need a nightime carer as you can t have one carer working 24/7. If someone is there my brother sleeps well he s reassured that there is someone there in case of emergencies but that’s should not be a regular thing and it’s not. Well until the meeting he s been unsettled every night. 

    So it seems a big mistake on their part !!!! I cannot wait to see how this pans out. There will be fireworks !!!! I m so cross, the anxiety and stress that this has caused is awful. I m still gathering all the information I can though.

    so keep coming with your advice please. 

    Thank you
  • lisathomas50lisathomas50 Posts: 4,318 Disability Gamechanger
    Hi if the care package has been in place that long they have no reason to cut the package down they are cutting packages if they aren't using the hours but from what you have said the xare package you have is required 

    You can ask to speak to a social services manager or ask citizen advice if they can help you to contact social services for you 

    Hope you manage to sort things out 
  • BigSis1BigSis1 Member Posts: 7 Listener
    I have spoken to the social workers manager to no avail. The shocking thing he s known my brother for years. 

    So actually they are in a good number because he has a carer at night which gives him reassurance and he feels safe so is settled. As soon as the meeting happened he s been unsettled not been able to sleep, has had stomach pain ( he has a pump, an episode of headache and vomiting that’s in 4 days. So in reality if if his needs increase at night, he needs a night time carer too. So 2 carers ! Makes no sense to me. They are causing more work for the live in day time carer.  
  • mikehughescqmikehughescq Member Posts: 6,536 Disability Gamechanger
    I think your starting point here is to put to one side that the social worker is newly qualified. It’s not relevant and it will come across as blatant ageism and prejudice on your part. You will rightly be perceived as irrational before any discussion even starts. The reality is that review processes are fairly stringent and well documented. If anyone is going to follow them properly it will be a newly qualified social worker. Your issue here, if there Is one, may well be because more experienced staff haven’t followed processes. 

    Then you need to put aside your assumption they know nothing of CP. It’s not relevant. Social workers, like HCPs do not need to know and cannot possibly know the ins and outs of every possible medical condition. A care package is not and never has been put in place because you have a specific condition. The consequences are what matters. 

    Finally you need to recognise that to have a care package in place and unchanged for 17 years is extraordinary. In that time there ought to have been regular reviews and the criteria for aspects of that care will have changed several times. There is nothing intrinsically wrong with reviewing a care package periodically and you can’t pre-judge the outcome. It’s also the case that whilst needs may be unchanged or even worsen over time the financial constraints on local authorities mean they often have little choice but to tighten criteria and review. If you want to have a rant at anyone over that then aim at central government because that’s where the issue originates.

    Looking at the Care Act etc. is useful but arguably not what’s needed right now. What’s actually needed is a simple conversation with the social worker to understand why a review is taking place right now; what the criteria are and so on. You can choose to be confrontational and have zero relationship with the social worker or you could take a step back. 
  • newbornnewborn Member Posts: 713 Pioneering
    Mike has given good advice. And you will get more, from Scope specialists.

    Central government has doubled the number of hospital doctors and raised funding to N.H.S. in the last ten years. Local government has cut social care funding by 30% in the same time. They are short of funds for various reasons, but refuse to update the property valuation which produces their income from rates.  Someone who bought a house (I think) twenty years ago for thirty thousand still pays rates (council tax) on that valuation, even though it is now worth nearly a million.   

    It is really unfair, because people in a new build flat bought for thirty thousand today would pay council tax on exactly the up to date valuation, i.e. the purchase price..
    The stupid thing is, civil servants resisted ever doing re-valuations, because when the old rating valuations were done, all that time ago, they might have required a man with a clipboard inspecting every house in the land.   But now, up to date valuations are available on property websites, even if the property itself is not for sale.  Revaluations could now be done at virtually no cost and in virtually no time, simply by letting one suitably programmed national  computer get on with the task.  As soon as that happens, the income of local authorities would leap. 

    They do get grants for this that and everything else, including social care,  from central government, as the main part of their income because they won't charge proper council tax.   But the money is never ring fenced, so they rob one department to fund another. They dare not cut education spending, but nobody will get famous footballers campaigning about elderly or disabled people, so what is to stop councils  cutting  the social care spending?.

    Councils have every incentive to let people get so ill they have to go to hospital, and every incentive to hope they fall and get taken to hospital, and then to let them stay as long as possible using an expensive  hospital bed they don't really need, because although it costs the public purse far more, the N.H.S. money has nothing to do with councils.
  • BigSis1BigSis1 Member Posts: 7 Listener
    I take all your points on and agree with what you are saying. I appreciate your comments, I really do. I m definitely not ageist or prejudice (the sw is mature, not that that makes any difference).  I am a professional myself. So know how these things work which makes all this even harder. However the review meeting was less than professional on the sw part and this is where the frustration has come from. Delivery/communication was absolutely dreadful for staters, no warmth no compassion. I could write reams of information on here about the ins and outs.  I would not expect anyone to have in-depth knowledge about every disability but a bit of knowledge would go a very long way. Looking at my brothers case history along with the package/contract that is already in place would be a good starting point. It definitely would have avoided all the anxiety and stress my brother is now experiencing. 

    The main point from this is yes  the package has been unchanged for a long time and my brothers needs have only increased but to his credit he tries his utmost to be as independent as possible. In reality he needs more care not less but he has made things work and he is happy with what he s got. So it really does not warrant a change in his care package. This is why it makes absolutely no sense. 

    I have to fight his corner he has no one else. I simply want to ensure I know his rights fully and get the right support, if that means I have to leave no stone unturned so be it. Just need pointing in the right direction.

    It’s very different when you are on the other side of things as a professional. It’s emotional as well as frustrating (because you know how and what should be done). As it is not my field of expertise I need support and advice. The care act being a good starting point. Yes I ve had to sit on my hands but when your banging your head against a brick wall it is not that simple. I m not ranting I m actually at breaking point and quite desperate if I m honest. This has been all consuming since the meeting. Things could have been handled far far better. Confrontational no, better relationship with the sw would be good. However good lines of communication is the key and works both ways, sadly that is what is missing on their part. 

    He ticks all the ‘boxes’ for eligible needs, they must be met regardless of local authority funding. So again WHY ? Non of it makes sense. It will only cost more if he starts requiring another ‘night care package’ due to his stress and anxiety. 

    And yes I m going to see how it pans out over the next few days and yes I think the sw/manager is going to have egg on their face and I will be putting in a complaint and asking for a written apology. Maybe next time they will do better. 


  • mikehughescqmikehughescq Member Posts: 6,536 Disability Gamechanger
    edited July 17
    newborn said:

    Central government has doubled the number of hospital doctors and raised funding to N.H.S. in the last ten years. Local government has cut social care funding by 30% in the same time. They are short of funds for various reasons, but refuse to update the property valuation which produces their income from rates…

    They do get grants for this that and everything else, including social care,  from central government, as the main part of their income because they won't charge proper council tax.   But the money is never ring fenced, so they rob one department to fund another. They dare not cut education spending, but nobody will get famous footballers campaigning about elderly or disabled people, so what is to stop councils  cutting  the social care spending?.

    Councils have every incentive to let people get so ill they have to go to hospital, and every incentive to hope they fall and get taken to hospital, and then to let them stay as long as possible using an expensive  hospital bed they don't really need, because although it costs the public purse far more, the N.H.S. money has nothing to do with councils.
    Not sure I agree with a word of that I’m afraid. The numbers of doctors is irrelevant given that the numbers retiring have trebled and are now at a record high. You forget that local government in that time has been forced to merge budgets social care with health care. Hardly a surprise when the NHS eats into that money but absolutely unfair to imply that the 30% cut was somehow unavoidable. Ditto properly valuations. Local authorities have no say in that at all. Dictated from central government. 

    Your last paragraph is simply wrong. If local authorities can’t get people out of hospital for lack of appropriate social care provision then there is a fine for bed blocking to be levied. Hardly an incentive to allow them to go in there in the first place. 

    Moving on…
    BigSis1 said:
    no warmth no compassion…

    I would not expect anyone to have in-depth knowledge about every disability but a bit of knowledge would go a very long way. Looking at my brothers case history along with the package/contract that is already in place would be a good starting point. It definitely would have avoided all the anxiety and stress my brother is now experiencing. 

    The main point from this is yes  the package has been unchanged for a long time and my brothers needs have only increased but to his credit he tries his utmost to be as independent as possible. In reality he needs more care not less but he has made things work and he is happy with what he s got. So it really does not warrant a change in his care package. This is why it makes absolutely no sense. 

    He ticks all the ‘boxes’ for eligible needs, they must be met regardless of local authority funding. So again WHY ? Non of it makes sense. It will only cost more if he starts requiring another ‘night care package’ due to his stress and anxiety. 

    And yes I m going to see how it pans out over the next few days and yes I think the sw/manager is going to have egg on their face and I will be putting in a complaint and asking for a written apology. Maybe next time they will do better. 

    I hear what you’re saying but it sounds to me that their communication has been crystal clear. You may not like the message but what exactly is it you think they’ve done wrong aside from suggesting an outcome you’re not happy with? It has to be borne in mind that delivering bad news is never easy and it has never been harder to bring warmth/compassion when caseloads are currently up around 80% on average across the UK for the last 16 months. I’ve never yet come across anyone whose said that a suggested reduction in care has been handled with warmth and compassion. People claim that they don’t like the message but the delivery made it worse. There’s an element of self-deception in that. I’ve done joint visits with social workers where whole wodges of negative information was provided as best it could be to be rapidly followed by a complaint about attitude which bore no relating to what I witnessed. Take the social worker, their knowledge and their attitude out of this completely. Those are not going to be changed by you in any way and changing them would not impact the decision. The thing you may be able to change is the decision. You need to shut out the other stuff and focus solely on the decision. The rest is noise. 

    I think you’re being a tad naive in assuming “a little knowledge will go a long way”. Will it? Why? A social care assessment consists of a set assessment against set criteria. That requires a judgement on what a person can or can’t do. That judgement isn’t necessarily enhanced by knowing more about CP. You can either mobilise independently or you can’t; cook or not; dress or not and so on. Arguing that somehow warmth, compassion and more medical knowledge changes the decision isn’t how this works and takes you down a dead end. 

    You seem to think that if his care needs are unchanged that the care package has to remain unchanged. You quickly need to get your head around the fact that that’s not true. There are processes to be followed but, as described previously, changes in the criteria can absolutely result in the withdrawal or reduction of services. This is likely the most important thing you need to get to grips with before you go further. You think they can’t. Yes, they can. 

    It may well be that the decision, if there has been one, gets changed, but using language like “egg on her face” suggests you’re letting emotion and aggression get in the way of the specifics of what it will take to change the decision. 

    You’ll see elsewhere on this site people getting angry about HCP reports for PIP. Statements get bandied about around the HCP being a liar; showing no understanding of the health conditions; not being a medical professional and so on. People write reams on all the things the HCP got wrong. It rarely works because focusing on what others are doing wrong means you’re not looking at whether what you have put in is clear enough and strong enough.

    All that anger, whilst understandable to some extent, is largely founded on a complete misunderstanding of the PIP process. 
    BigSis1 said:
    Looking at my brothers case history along with the package/contract that is already in place would be a good starting point. It definitely would have avoided all the anxiety and stress my brother is now experiencing. 

    Worth commenting on this in isolation. I am frequently required as part of my non social work role to read social work records going back years. I’d say a 17 year old record would cover probably a minimum of 150 case entries plus associated documents. It’s a half day of work done properly and I’m in the luxurious position of occasionally having that time. Mostly not. Skim reading at best. Social workers are not in my position. Your expectations here are detached from the reality. If I’m being honest the number of entries is likely to be closer to 300. Much of it will tell you nothing that you don’t know already from recent entries and the current care plan. 

    The assumption that a social worker would pick up a case and head into meetings or calls without at minimum reading the current care plan is… well let’s just say you best have some very clear evidence for that very serious assertion/accusation and I’m not sure how you would have that. Again, you’re focusing on the person not the issue.
  • BigSis1BigSis1 Member Posts: 7 Listener
    I do know these things and I do have all these things in the back of my mind, delivering bad news is never easy, taking things away etc and yes I do agree the emotion of it all has got the better of me and I m angry and frustrated at the way it was done. In all the years I have never ever had a meeting like it. Set off on a bad footing and just continued to go down hill. I do actually feel that communication, the way things are delivered and being thorough is everything, especially in these kind of situations. After all these things can have a massive impact on someones quality of life. 

    In reality if feels that this was a tick box exercise( I m not naive enough to think otherwise), it could have been handled a whole lot better than it was. His ‘eligible needs’ are there and plain to see. His independence is his hand and the button on his electric chair. Everything else is done with the support of a carer. Once he is out of his chair he is very vulnerable, needs the same support he has in the day, toileting etc (fully in control of his bladder and bowels). So why are they focusing on taking it away. 

    I m taking on board everything your saying, I know the role of the sw and understand fully what they are doing. I just need pointers, support. I know my brother has rights as a disabled person but I need information. For example, he needs support at night and these are the reasons but I need to back it up surely. It’s no good sitting there saying he has rights. What actually are they, if for instance it effects his well being, where does it state if it effects this, they can t take it away, it has to be considered. If that makes sense. I have a lot of reading to do to get up to speed but what should I be looking at ? A
  • Richard_ScopeRichard_Scope Posts: 2,829

    Scope community team

    Hi @BigSis1
    Welcome to the community. I can appreciate that this is a very stressful time for your brother and yourself, not helped by the less than perfect communication.
    I would recommend that you contact Peoplehub, who have real expertise in this area. You might also want to contact CarersUK who can advocate for your brother when it comes to challenging a decision.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • BigSis1BigSis1 Member Posts: 7 Listener
    Thank you so very much, that really helps me a lot and I really appreciate it. 
  • Richard_ScopeRichard_Scope Posts: 2,829

    Scope community team

    No problem @BigSis1. Please keep me updated.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • BigSis1BigSis1 Member Posts: 7 Listener
    I will do. Thank you again.
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