Have a newly qualified SW trying to change a long-standing care package. She has no knowledge of CP — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

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

BigSis1 Community member Posts: 7 Listener
edited July 2021 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


  • woodbine
    woodbine Community member Posts: 11,294 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.
    2024 The year of the general election...the time for change is coming 💡

  • chiarieds
    chiarieds Community member Posts: 15,868 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.
  • janer1967
    janer1967 Community member Posts: 21,964 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 

  • BigSis1
    BigSis1 Community 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
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 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 
  • BigSis1
    BigSis1 Community 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.  
  • newborn
    newborn Community member Posts: 832 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.
  • BigSis1
    BigSis1 Community 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. 

  • BigSis1
    BigSis1 Community 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_Scope
    Richard_Scope Posts: 3,614 Scope online 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.
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • BigSis1
    BigSis1 Community member Posts: 7 Listener
    Thank you so very much, that really helps me a lot and I really appreciate it. 
  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    No problem @BigSis1. Please keep me updated.
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • BigSis1
    BigSis1 Community member Posts: 7 Listener
    I will do. Thank you again.


Complete our feedback form and tell us how we can make the community better.