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Advice on support workers please

kaydikaydi Posts: 13Member Listener
Hi everyone, I’m struggling on my own and a support worker would make a huge difference to my life. I’ve had depression, agoraphobia and anxiety for over 40 years, I also have ADHD. I have tried to get a support worker through my GP who told me the ADHD clinic would provide one but unfortunately they said they can’t. I tried through social services but got the same response, went back to my GP who then arranged short term support. This helped tremendously but was for 12 weeks only and she changed her job so I didn’t get the full 12 weeks. I’m having severe problems with universal credit that has been ongoing since I first claimed last year and I need help with this. Please can anyone tell me if there is such a thing as a long term support worker for mental health problems? 


  • poppy123456poppy123456 Posts: 16,266Community champion Disability Gamechanger
    Hi and welcome.

    Yes, it's possible to have a support worker but it's not easy and not everyone will qualify for one. This will come under direct payments and for all this you will first need to refer yourself for a needs assessment. https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/

    Someone will visit you in your home and complete the assessment. Once this is done they will tell you if you're eligible for any support. If they do decide that a support worker is needed then direct payments can be arranged, however, do be aware that you may have to pay a contribution towards the cost of any support you may have.

    What problems are you having with Universal credit? more information is needed to be able to advise you further.

  • Chloe_ScopeChloe_Scope Posts: 6,556Administrator Scope community team
    Hi @kaydi and a warm welcome to the community! Thank you for taking the time to share this with us and I am sorry to hear you are finding things difficult at the moment.

    I hope Poppy's advice has been helpful and I have moved your post to a different category of the forum so I hope this helps to get you more guidance. :)
    Online Community Officer
  • kaydikaydi Posts: 13Member Listener
    I have already tried to get a support worker through social services but was told me they don’t provide them for the mental health problems I have (agoraphobia, depression, anxiety and ADHD). A couple of years ago I also wrote to my local MP who replied saying someone from social services would come out to assess me but no one ever came. A month ago I wrote again explaining I’m struggling with UC and received a reply saying he has written to the DWP to discuss my case and in the meantime has contacted social services to arrange short term support. I’ve heard nothing since. 

    I’ve had continuous problems with UC, payments being wrong, LCWRA not being paid, rent to my landlord being withheld for 4 months, didn’t receive my first payment until 14 weeks after claiming which was 17 weeks after I moved but was unable to get backpay for those 3 weeks rent, journal messages constantly ignored etc. 

    My LCWRA was eventually paid as was the rent and I was then assured my rent was being paid in full but it wasn’t and I’m now having to pay the arrears that built up at £31 a month after my housing association debt advisor contacted me. 

    But 2 ongoing problems are they’re deducting almost £48 a month for a payment I didn’t receive. I fought my phone phobia to ring twice about this, both the debt recovery line and the normal number but both said they can’t help so I sent a letter about it to the debt recovery address on 11th August this year. I heard nothing from this. My work coach then told me the £561 payment I’m paying back was paid in November 2018, I then sent a copy of my bank statement showing I received £232, not £561 in November and another letter asking them to sort this. I sent this on 20th September but again I’ve heard nothing and they deducted another £48 in September. I explained all this in my letter to the MP and also left several journal messages about it but they too have been ignored. I don’t know what else I can do to get this dealt with. 

    The other problem began with an LCWRA assessment, I tried to get a home visit for this as leaving my home is so difficult, they said I’d need a doctors letter for this, I paid £20 for this but they still refused a home visit and I had to attend the assessment which was very stressful. At the end of August I received the results and they’ve left me reeling as the assessor decided although I have limited capacity to work, I’m fit enough for work activities! She ignored my ADHD which seriously affects my life and she also ignored 2 physical health conditions I’m struggling with. I’ve sent a Mandatory reconsideration letter 2 weeks ago but I’m still waiting, praying this decision will be overturned. In the meantime my September UC statement payment was £0, my LCWRA has gone down to £126 and it says I must pay £46.39 towards my rent. I also received a letter saying my ESA has gone down to £102 a week. 

    Before UC realized I wasn’t being paid LCWRA they’d told me I must pay £210 towards my rent leaving me without enough to cover my bills. Now it seems I’m back in the same situation. My housing association debt advisor told me she couldn’t understand this as she said everyone else on my complex on housing benefit only pay £5/£6 towards their rent. Admittedly £46 is better than £210 but I’m already paying £31 on arrears. 

    I’m so stressed and this is exacerbating my health conditions making the pain unbearable.
  • thespicemanthespiceman Posts: 5,775Community champion Disability Gamechanger
    Hello @kaydi   Pleased to meet you welcome.  Thank you for joining and sharing.

    I am one of the team of community champions. We guide, advise and help new members who join the forum and community.

    Sorry to hear what your are experiencing getting access to a support worker.

    Understand this. You could apply to a mental health charity.

    I used this one last time.


    You can self refer or use your Doctor to apply. Might not be in all areas.

    I know some areas not available .

    Please can I suggest you contact them.  They offer floating support and outreach workers.

    Offer guidance, advice and support with mental health issues and also will look at anything you may have problems with.

    Signpost and give you relevant information, support with anything concerning benefits .

    Will attend at assessments and reviews.

    Wish you the best.

    Please if I can help with anything please get in touch.

    Happy to be supportive.

    Please take care.


  • kaydikaydi Posts: 13Member Listener
    Thank you very much for this, I will go check if they’re in my area, fingers crossed they are. 
  • charlie79charlie79 Posts: 125Member Pioneering
    I am with lookahead in London you can do a self referral. They have 2 year funding contracts with each client and offer avenues to further help. What part of England are you in
  • poppy123456poppy123456 Posts: 16,266Community champion Disability Gamechanger
    @kaydi It's totally possible to receive a support worker for mental health problems but it will depend on the local council. To determine what support is available to you, if any then you will first need to refer yourself for a needs assessment. No support will be given without first going through that. To refer yourself you need to use the link i posted in my previous comment.

    For your UC, you mention ESA, are you receiving ESA as well as UC? or were you previously claiming ESA and transferred to UC? Sorry but this isn't clear in your comment because you mention ESA. If you were previously claiming ESA then when did this claim start?

    If you weren't previously claiming ESA then when did your claim start for UC LCW?

    For the debt payment i'd advise you to ring UC rather than put notes on your journal, very often journal messages get left unanswered.

    Why was your September payment reduced to zero? Standard allowance for under 25's is £251.77 and over 25's is £317.82 then the LCW of £126.11.

    For your housing element i see you're renting from social housing, do you have any spare bedrooms?

    As you no longer have LCWRA then do you claim PIP or DLA? If you don't then it's possible that the benefit cap applies to you unless you're excluded by any of these in this link. https://www.entitledto.co.uk/help/benefits-cap

  • kaydikaydi Posts: 13Member Listener
    I’ve been on ESA for years, I was changed onto it from income support a few years back. I moved into sheltered housing last June after the friend I lived with died, his wishes were that I continue living in his house until I died but his sons ignored his wishes and evicted me to sell his house, something my friend had assured me they would never do! Unfortunately he was so sure of his sons he hadn’t put anything in writing. He was my carer until he developed dementia and I then had to become his carer for almost 5 difficult years, his sons refused to get involved with his care.

    When I moved I needed help with my housing costs, my friend had never charged me rent (I paid my way in other ways) and it’s the first time in my life I’ve needed this. I applied for housing benefit first but was told to claim UC, I claimed this in July 2018 and the whole experience has been harrowing. My ESA has continued although it’s been reduced twice and it used to be income related but now it’s changed to contribution based. 

    No I don’t have any spare bedrooms, I live in a tiny bungalow. 

    I was awarded “indefinite” DLA/SDA in 1999 but lost this when PIP came in, have been refused PIP twice even though I fit some of the criteria.

    I don’t know why my September payment was £0, before my payments were £122. I’ve asked in my journal but didn’t get a reply. I find phoning UC difficult as I have a phone phobia and avoid making calls unless absolutely necessary as it makes me so anxious.

    My statement says I’m entitled to £317.82, then it says housing £476.97 but in smaller writing it says £430.58. Then LCW £126.11. Total entitlement £920.90. Deductions £442.65 (ESA), debt repayment £47.67 (this is the one I don’t owe as I didn’t receive the payment), Landlord £430.58. 

    I don’t know if future payments will be £0 but if I could get them to stop deducting the £47.67 I’d at least have that. I did manage to ring them twice about this but they said they can’t help! I thought they would sort it when I sent my bank statement as proof I didn’t receive the £561 payment but they’ve just ignored it and I don’t know what more I can do. 
  • poppy123456poppy123456 Posts: 16,266Community champion Disability Gamechanger
    I'm unsure why it says housing £476.97 but they are paying £430.58 to your landlord. May i ask how much your rent is per month?

    Based on those figures above then i'm afraid your UC will be reduced to zero again for future payments, unless the MR decision changes but it's rare for this to happen. Most people have to take it to Tribunal and appearing in person will give you the best chance of a decision in your favour. Waiting lists for hearings are long in most areas and lots of people are waiting in excess of a year for a hearing date, from when they request the Tribunal.

    The overpayment you're disputing were you paid ESA and it wasn't deducted from your UC, which means you received it twice? This would be the most likely explanation.

    DLA and PIP are different benefits with different criteria. PIP is about how your conditions affect your ability to carry out daily activity based on the PIP descriptors, not about a diagnosis. Did you request the MR then Tribunal on that decision?

  • kaydikaydi Posts: 13Member Listener
    My rent is £486.14 a month. 

    The first payment UC paid in August 2018 was for £317 and they said this was an overpayment as they hadn’t taken my ESA into account. I’d paid this off my rent arrears and UC had been deducting it at £47.67 a month. My next UC payment was a double one for £561, I received this in October 2018, it was double as I’d not received anything in September. I then received a file saying I must pay this back too, the reason they gave was because my housing costs had changed and I hadn’t told them straight away but my housing costs hadn’t changed! I disputed it and was eventually told I shouldn’t have been sent the file and I didn’t have to pay it back. 

    In August this year I realized UC were still deducting £47.67, I managed to ring them and was told the £317 payment was paid off and that I’m now paying back a £561 payment. I immediately assumed this was the £561 payment I’d received in October and explained I’d been told I don’t have to pay this. I was then told they couldn’t help. This was the debt recovery line, she told to try ringing another UC number but they too said they can’t help. So I sent a letter to the debt recovery address on 11th August but heard nothing back. 

    At the end of August I received the results of my LCWRA assessment and in September received a work review call from my work coach, I mentioned the deduction to him and he told me I received two £561 payments and the one I’m paying back is the second one, received in November 2018. I knew I’d only received one £561 payment so I checked my bank statement and sure enough I received £232 in November, not £561 and I then sent a copy of my bank statement to UC debt recovery and another letter explaining. But this has been ignored too! 

    After my LCWRA payments began all my old UC statements changed and are now completely different, before my August and September statements showed £0, they now say I received £166.22 which is incorrect. I kept a screenshot of them showing £0. From November I received £232, unfortunately I deleted my screenshots of later payments but my bank statements show my payments were £232 until my LCWRA was added. 

    Before my LCWRA was added UC had told me I must pay £210 towards my rent. My ESA had been reduced from £127 to £110 a week, my UC payments were £232 a month and paying £210 rent wouldn’t have left enough to cover my bills and living expenses. My housing association debt advisor helped by contacting UC and I then received a back payment of £1,198 for the LCWRA. I had paid £1,344 rent arrears from my savings and this £1,198 helped to restore my savings as I had very little left. I paid the rent arrears from my savings as having been evicted from my friends house in June I couldn’t take the risk of eviction again. 

    After I received LCWRA UC assured me in my journal my rent was being paid in full. Unfortunately this wasn’t correct and many months later my housing association contacted me saying I was in arrears and I’m now paying these arrears at £31 a month. I have no idea why they allowed the arrears to build before contacting me! 

    On 1st April my rent increased and I reported this in my journal but I made a mistake (I ticked I live in sheltered housing) and it then didn’t ask for the amount my rent increased by so I then did it again and I entered the increase amount. 

    After this none of my statements showed my rent element and my housing association contacted me again saying I was almost £1,000 in arrears as UC hadn’t been paying them. UC wrote in my journal I had “confused their system” by reporting the rent increase twice and my rent was being withheld. They asked me to report the rent increase again and assured me the arrears would be paid urgently. These were not paid until the end of August! 

    My housing association debt advisor told me everyone else on my complex on housing benefit pay just £5 - £6 a month so I don’t understand why I’m now having to pay £46.39. With nothing from UC I receive only my ESA which was reduced again to £102 a week when I received my LCWRA assessment decision. As I’m already paying £31 arrears this means I have to pay £77 a month and this doesn’t leave enough to cover my bills and living expenses. 

    I completed a self assessment test online which said I should be in the support group and I’m praying my MR letter will succeed in putting me back in this. I’m aware only 85% of MRs succeed and can only hope mine will be in the 15%. I wasn’t aware a tribunal takes so long but the thought of attending a tribunal terrifies me, I don’t know if I could cope with this. I’ve been agoraphobic for over 40 years, am unable to leave my home on my own. But if my MR fails I couldn’t cope with living on £102 a week. 

    My mental health has suffered from all this, I’m very depressed, I’m barely sleeping as apart from the money side of the decision I’m really scared about the work commitments I’ll be expected to do. The decision I’m fit enough for work related activities is so wrong, I’ve been struggling with my physical health conditions, am in unbearable pain 24/7 from scarring and atrophy from a prolapse repair operation in February and nocturia causes 5/6 bathroom visits every night. My urologist prescribed medication for this but it didn’t help and I have another appointment on 15th October. I also have only one kidney and stage 3 kidney disease and the medication caused my oedema to worsen, he may not be willing to prescribe more medication but the nocturia leaves me permanently exhausted and I’m struggling to cope with every day life. 

    As for PIP, I did request an MR the first time but this failed and as I was struggling to care for my friend with dementia a tribunal was out of the question. The second time I applied was after I moved and I lost hope when this failed as I was so sure it would succeed and I didn’t request an MR that time. 

    I find living alone alone with all these problems overwhelming, I need to reduce my stress levels or I fear I’ll have another breakdown and I can’t let this happen. But everything feels so hopeless.

  • poppy123456poppy123456 Posts: 16,266Community champion Disability Gamechanger
    It seems like a complete mess and very difficult to give further advice because there's so many figures and no one here can see any journal entries/bank statements to check those figures. An internet forum can only give a certain amount of advice because of this reason.

    One thing that has come to my mind is, is there any service charges on top of your rent, which aren't being covered by UC? Not all service charges are covered. Also are you claiming Council tax reduction separately from your local council? This isn't part of UC.

    Your ESA reduced when you claimed UC because part of your ESA was income related, which is paid in UC. The £111.65 per week (increased from April 2019) is Contributions based, which isn't part of UC so you continue to receive this but it's deducted from your UC payment.

    I'm going to advise that you make an appointment and visit a local advice agency near you for further advice to this mess with your UC payments. This link will help you find what's local to you. https://advicelocal.uk/

    Sadly, 82% of MR decision's fail and not 82% succeed. May i ask if you send evidence to support that claim? They very rarely contact anyone for any evidence. If the decision does remain the same you can request a telephone hearing for the Tribunal but i don't know the success rate of those i'm afraid. We don't often hear of telephone hearings. If you can though i do advise appearing in person at your hearing. Maybe you have a friend or family member that can attend with you?

  • pollyanna1052pollyanna1052 Posts: 1,509Member Disability Gamechanger
    I have a care plan and pay for carers with Direct Payments. I have recently been told I have to contribute £57.22 a week. Poppy has given you all the info regarding an assessment.
    I cant see why mental health issues should bar you from getting support....but maybe it does depend on each council.

    Although you have been turned down before, it is worth another try. Do you have an assigned social worker? It would be a social worker who does the assessments.

    I am on the list for more care, as I am struggling.

    Good luck xx

  • kaydikaydi Posts: 13Member Listener
    Yes I sent copies of my hospital letters from my gynecologist and urologist appointments showing the problems I’m having, I had told the assessor but she made no mention of these in the written explanation. She also made no mention of my ADHD and I then realized she hadn’t asked how it affects my life (immensely) so I sent my last report from the ADHD clinic. I had been doing an online cognitive behavioral therapy course to help with my anxiety, agoraphobia and phone phobia but found concentration difficult, even more so once I received the assessment results and my CBT supporter had sent me a message saying the course wasn’t meeting my needs and suggested an intensive CBT course. I sent a screenshot of this message. Also a letter written by a friend saying how the decision has affected my mental and physical health. I also included a council tax letter saying I’m exempt due to being severely mentally impaired. 

    I was exempt from council tax while receiving DLA/SDA but when I moved I was no longer receiving these but I’d read you don’t need to be in receipt of disability benefits to get council tax exemption. Even so my disabilities weren’t acknowledged by the council tax people and this was another battle I fought. It wasn’t until I wrote to my local MP who wrote to them that I finally received a letter saying I’m exempt. 

    Yes you’re right, it’s the service charges on my rent that weren’t covered by UC. But UC had told me in my journal both my rent and the service charges were covered! 

    You say contribution based ESA was raised to £111.65 in April? I don’t understand why I’m only getting £102 then? I was on £127 until I received LCWRA, it then went down to £110. When I got my assessment results in August it went down to £102 a week. 

    As for making an appointment with an advice agency, I’m reluctant to do this as when I was being evicted I made an appointment with CAB, my daughter took me but I was so anxious I was awake all the night before and was then told they had no advisors so they were unable to help. 

    A support worker who could visit me at home would be more helpful, I could then show her UC statements, journal entries, bank statements etc. I checked out the Richmond fellowship as advised here but unfortunately they’re not in my area. 

    I’m still waiting to hear back from the MP as he said he’d spoken to someone at social services about short term support. I strongly feel I need long term support but would gratefully accept short term to help me through this mess. But waiting is hard, it’s been over a month since I first wrote and I’m losing hope of getting this help. 

    Before i I moved in with the friend I mentioned I lived alone for 4 years after my marriage ended and I had a CPN who supported me and was brilliant. My friend then became my carer so I no longer needed my CPN. This was in 2004, he developed dementia in 2014 and I’ve been trying to get support since then. At first I asked my GP for another CPN but things had changed and they’re no longer given long term, my GP said it’s a support worker I need but that she can’t provide one. She said the ADHD clinic would but they too said they couldn’t. I then asked the social worker that helped with my friends dementia but she told me social services don’t provide support workers for mental health problems - confusing considering what the MP has said! 

    In June my GP did arrange a short term support worker and she helped tremendously. But it’s long term I need. I can’t keep fighting alone, I fought for almost 5 years for my friends health and care, fought his sons who evicted me and hoped life would be easier after moving. But claiming UC has been a nightmare. 
  • kaydikaydi Posts: 13Member Listener
    Thanks, Pollyanna, no I don’t have a social worker, as I mentioned in my last post I did have one when I lived with my friend but this ended when my friend died. 

    Yes it would be worth trying again despite being told social services don’t provide support workers for mental health problems but there’s no way I could pay £57.22 a week as I only get £102 a week ESA. 

    My only hope is UC will see sense and put me back in the support group but I know there’s only a 15% chance of this happening. 

    When I told my work coach at UC there’s no way I could go to work he said I’d misunderstood, that work related activities means I need to prepare for work in the future “when I’m better”. I tried telling him I’m not going to get better but he refused to believe this. I’ve had depression, anxiety and agoraphobia for over 40 years, ADHD is for life and many of my physical health conditions are also for life. 

    In my explanation letter it says the decision is unlikely to cause my mental health to deteriorate but it has deteriorated so much I’ve had suicidal thoughts. I know I can’t act upon these though as I have 4 cats who need me. My cats are my world but my stress is affecting their health causing more problems and I feel completely overwhelmed. 
  • thespicemanthespiceman Posts: 5,775Community champion Disability Gamechanger
    Hello @kaydi   Sorry to hear the mental health charity I suggested not in your area.

    Please if I can advise have a look on line for local mental health charities. I would look at MIND website or consider looking at the NHS website which could give you links to any other mental health charities.  In your area something to think about another option.

    You would need to type in your postcode.

    I do understand what you are going through.

    One other organisation is RETHINK.

    This is an advocate service for those with mental health issues. Might be worth taking look at their website.

    Informative and useful if your experiencing difficulties with medical professionals such as Doctors trying to get some support and advice.

    They can intervene on your behalf.  Speak for you in front of medical professionals and would first talk to you before any appointments what you wish to say.


    Helpline 0300 500 0927.

    Hope that helps. Please if we can help further and to give you reassurance we are here as a community to help and advise be supportive.

    Always ready to listen.

    Keep in touch.

    Please take care.


  • poppy123456poppy123456 Posts: 16,266Community champion Disability Gamechanger
    Future appointment letters are not classed as evidence for the WCA or for PIP. This is because it doesn't tell them anything other than you have an appointment sometime in the future. Do be aware also that they will only take into consideration what your condition was like at the time the decision was made, any worsening of condition since then will not be taken into consideration. Same for the Tribunal, if it gets that far.

    The £111.65 is Support Group rate (LCWRA £336) as you were placed into the WRAG after your WCA then your payments will have decreased to £102 because this is WRAG amount as your ESA claim started before April 2017, so this is the reason why your payments have gone down recently. The reason your ESA went down from £127 was because you were claiming the Income related top up, which can't be paid on your ESA because you were claiming UC.

    For your service charges to be paid for by the housing element, it will depend what services charges there is. Not all service charges are paid. See link to know what service charges can be claimed for under UC. https://www.entitledto.co.uk/help/Housing-overview-Universal-Credit If you're not sure what you're being charged for then you'll need to speak to your housing officer.

    If your service charges can't be claimed for then you can apply to your local council for a Discretionary housing payment (DHP)

  • kaydikaydi Posts: 13Member Listener
    Thanks for your reply. I have already written long emails to Mind and to Dial, another mental health charity. Mind were no help at all, they obviously didn’t read my email properly as they suggested group meetings which would be impossible, I get anxious and have panic attacks leaving my home. Dial haven’t replied yet, I only wrote a few days ago. 
    I also wrote a very long email to AgeUK but made a mistake in their email address so it failed to send. I googled how to resend this and it said it would be in my outbox and I could resend from there. But I couldn’t find my outbox, contacted app support who replied saying there is no outbox on the app! They said the only way to resend is to write it out again, it took me hours to write it and as yet haven’t attempted this but AgeUK were very helpful when I was being evicted even though I wasn’t quite 60 then, they still gave helpful advice so I will rewrite it. 

    Rethink is one i was considering writing to, thank you I will give them a try. My GP practice recently underwent a CQC investigation and the head GP was suspended. I feel gutted as she was the only GP that knew and understood my problems. New GPs have been brought in and I did see one of these, showed her my decision letter about work activities telling her I can’t cope with it. She handed it back as if it was on fire saying she can’t help with it and dismissed me! Another new doctor I saw a few months back when my GP was on holiday said he couldn’t refer me to a urologist as he doesn’t know me! I wish I’d reported him for this, going to appointments isn’t easy for me but I then had to make another appointment to be referred. 

  • poppy123456poppy123456 Posts: 16,266Community champion Disability Gamechanger
    Have you had a needs assessment completed? If not, then please refer yourself for the needs assessment using this link here. Put your postcode in and it will take you to your local councils website, where you will be able to refer yourself.

    If your work coach isn't very understanding while you're waiting for the MR decision then you can request another one and hopefully the next will be more understanding about your work commitments.

  • kaydikaydi Posts: 13Member Listener
    My reply from the MP said someone from the council would come to access me, should I not wait for this? 

    I sent my MR on 20th September, do you know how long they normally take? It says on the net 2 weeks or much longer which isn’t very helpful. 

    I’ll give changing my work coach some thought, my next work review isn’t until December and I’m praying this won’t be necessary. I’m desperate for the results of my MR but at the same time terrified in case it’s bad news. I’m not sure how I’d cope if it isn’t overturned. The MP also wrote saying he’s liaising with the DWP to discuss my case as a priority but that this can take up to 20 days, it will be 20 days on Wednesday. I don’t know if this will have any effect on the decision though.
  • poppy123456poppy123456 Posts: 16,266Community champion Disability Gamechanger
    There's no harm in referring yourself for the needs assessment just incase your local MP isn't true to their word and no one contacts you.

    There's no timescales for any decisions, it can take anything from 2-8 weeks, sometimes longer.

    As you don't have another work review until December, i think your work coach is being very fare, some people in the LCW group have more work commitments than that. If the MR decision doesn't change and that work interview means you have to attend your local job centre then you can ask for a telephone interview at home.

    In the meantime please find out what service charges you need to pay for and whether or not the housing element covers them. If you don't then you will have to continue to pay the shortfall with your rent.

    Good luck with the MR and do let us know the outcome. In the meantime if you need more advice please just ask.
  • thespicemanthespiceman Posts: 5,775Community champion Disability Gamechanger
    Hello @kaydi   Thank you for your reply. Sorry to hear MIND was a problem.

    I have to share with you and inform  if you do not mind. Unfortunately many mental health charities do this now.

    Offer a support group meetings not immediately but after a period of time.

    The whole idea is to make sure you can cope with what you have. This is also gives the support team an opportunity to discuss with you and others a lot of information, advice and guidance on mental health.

    Please can I stress myself has the same. Anxiety get panics and stressed but had to do this. Besides you meet other people like yourself whom become a great support.

    Only for a short while.

    Every time you will apply for a service whether it is council or a charity. They will first make a contact to you by letter .

    Visit you at home most do as a matter of procedure. You need to be thinking first how any one can help you.

    Make some notes and say this is what I need.  This is what I want from a service.

    This is something they do.  They do not run your life for you. All support staff are there to able you to cope with your mental condition what ever it is.

    Offer a contract some will a period of time. You must be prepared to accept one thing I learnt anything they offer or discuss with you.

    If you ever refuse or not accept the advice or information given to you. They will say so and tell you and may sever contacts with you.

    Send you a letter.  I found this out from various mental health organisations and services the early years I had encounters with support staff.

    This is because you must remember mental health as any service is a business . All about budgets, cost cutting and underfunded, over burden staff.

    Sorry to tell this to you.  This happening all over the country. The big problems are so many.   Because the councils and may I add charities have to make choices and decisions every day.

    All around funding.

    Who has to go and who has to stay. If you move on a little will have to let you go. As my self.

    Sent me a Email around three years ago saying ending contract. Understand that as I have tried to cope with my own issues.

    From learning and educating what they give the support meetings .

    Must add my own floating support from the charity Richmond Fellowship. Had fifteen plus service users or clientele every fortnight.  

    The work load these staff have is tremendous .  My own floating support would contact me around early morning before 9am many times. Send me Emails up to late evening.

    Please can I add one other point.  You have to try to help yourself if you can this is something the services you are asking for insist you do.

    I know it is difficult .Every day.

    I am sorry about AGE UK. Experiencing some communication problems.

    Please can I just say I would just send a short resume of your issues and problems because they just do not have the time.

    To read long Emails this is different here.

    You can talk many times as you want. I sent to an organisation learnt that one a long Email never read it so just sent a short story of what I need.

    Hope that helps.

    Keep in touch.

    Please take care.


  • kaydikaydi Posts: 13Member Listener
    The developer of my email app told me the only way to resend an email in the sent box is to write it out again but he obviously doesn’t know his own app as last night I discovered I could redirect it, it gave a pop up box to write another address in and I wrote in the correct address and it sent. This was to AgeUK and I received a reply this morning but it said they’re not funded to help with UC and suggested I contact CAB. I know this can be done online so I’ll do this today. 

    Poppy, my housing association debt advisor told me the shortfall in my rent is £9.17, it’s just a shame she didn’t tell me this many months ago instead of allowing the arrears to build up as it’s this I’m now paying at £31 a month. I feel angry UC told me my rent was being paid in full, the exact words in my journal are: We pay £442.74 directly to your landlord for your £357.33 rent and your £85.41 service charges so your rent is covered. (This was before my rent increased). 

    As for my work coach, I told him I can’t attend the job centre and he does my reviews by phone. This was a huge relief, at one time I never used to answer my phone (or my door) but this was when I lived with my friend, as his dementia progressed he stopped answering both and I had no choice and it became easier with time. But phoning out is still something I find very difficult, just thinking about making a call causes my stomach to summersault and I feel very panicky, I tend to put it off but I know this is wrong as the longer I put it off the more my anxiety builds. Just making one call leaves me completely drained. I wish I could overcome this as sometimes I have no other option but to call out although mostly I can use email and can make doctors appointments online. 

    Finding the courage to ring UC only to be told they can’t help as with them deducting money I don’t owe is so annoying, I know I should try again as they’ve ignored my letters, bank statement and journal entries but I can’t make myself do it, it makes me feel so anxious it’s hard to find the right words to explain to them. 

    But if if I could get them to understand I didn’t receive the £561 payment (which my bank statement proves) they would then stop deducting the £47.67 and this would help with my situation of receiving less than I need to cover my bills and living expenses. 

    I find it hard to believe I will now only receive £102 a week and out of this I must pay £77 in rent and rent arrears per month. The government has badly let down the disabled, how can they give us “indefinite” DLA/SDA and then take it away. My DWP letters used to say I received extra money to help because I’m severely disabled, these disabilities haven’t changed but I’m now left not only struggling with the disabilities but without the financial stability that was so important in helping me cope. How can this be right? 

    And how can it be right i now have to pay £46.39 rent when everyone else on my complex on housing benefit only pay £5 - £6 towards their rent? 

    Sorry for the rant but I'm feeling very low today. Life shouldn’t be a fight but the last 6 years have been nothing but fighting and I can see no light at the end of this long tunnel. 
  • thespicemanthespiceman Posts: 5,775Community champion Disability Gamechanger
    edited October 2019
    Hello @kaydi   Please can I suggest when ringing any one. Make a script a notes to yourself what you wish to say.

    On a piece of paper bullet this and itemise this.

    Include the name you have to your address any thing like NI numbers or reference numbers. Just been there. Forgetting does happen.

    Then speak from this to read off.

    Same with Doctors make notes what do you want to say.

    Arrive at GP surgery when going in please can you read this thank you.

    My Doctor I do this with.  

    Make it simple short and sweet not a spiel of stuff.

    They only have a limited time.

    Do this a lot your not alone.

    Learnt this from experience.

    Rehearse this take your time and have beside your side a glass of cold water.

    To hand.

    One other thing your in control have some deep breathing lots of music like Classical FM have this one every day helps to maintain relaxation and to cope with anxiety.

    Or use a coping box. Every one should have one. Make a place in your home for your favourite things to help you through the days.

    This could include favourite words and poems. Which help you in stressful situations.  Favourite music and CD.

    Bible a good one lots of the passages relevent.  Have also your favourite things and aspects of your life that you need to close to hand.

    In your coping box any helplines or contact numbers. Some one to talk to or any Email addresses you can use to give yourself reassurance.  Can contact any friends or contacts you might have.

    Anything that gives you comfort and eases the problems today and every day . Scented candles with aromatic scents as herb or spice ones. Certain types of herbs helps with relaxation. Lavender Oil used to buy.

    Blankets, duvets and anything pleasurable that you consider makes you feel good food wise have in stores.

    My recipes and favourite quick easy foods I can make simply. 

    Can help there if you wish to.

    Soup is a good one I use all the time.  Which I make homemade when I am good use a day like a Sunday. For making for the freezer .

    Please take care.


  • kaydikaydi Posts: 13Member Listener
    I received a call from debt recovery about the £47.67 being deducted from my UC and although she at first said she can’t help with it she said she sent my first letter on to UC and will now send my second letter and bank statement to them and ring me back. She has just rung back and said I don’t owe the £561, that I will be refunded the £200+ (I can’t remember the exact amount) that’s been wrongly deducted and she took my bank account number and sort code so she can refund it. She said I will now receive the £47.67 instead of my payments being £0. What a relief it’s finally been sorted. 
    I took the opportunity to ask her about UC saying I must pay £46.39 towards my rent and she said this can’t be right as I can’t be expected to pay this amount when I’m on such a low income and she advised I contact my housing association. I had already done this and they told me to speak to my scheme manager and I’m waiting for her to visit me so hopefully this too will be dealt with. 
  • kaydikaydi Posts: 13Member Listener
    My scheme manager knows nothing about my reduced rent payments so couldn’t help so I emailed my housing association debt advisor again but she too hasn’t been informed and told me to contact UC who had told me to contact her! 
    But she explained why my rent is in arrears - UC had been paying £476.97 which they assured me covered my rent and service charges but these are £110.07 a week due on a Monday and there are 53 Monday’s this year so £110.07 x 53 divided by 12 equals £486.14. So all year there’s been a shortfall of £9.17 which is why she asked me to pay £31 a month. Why she allowed the arrears to build up I have no idea! 

    Now UC have reduced my rent payments to £430.58 and say I must pay £46.39. But again this is incorrect as the shortfall now is £55.56 not £46.39 which means to prevent further arrears I’d have to pay this plus the £31 = £86.56. 

    UC have calculated my rent wrongly and I’m unlikely to be the only one they’ve done this to, no wonder we keep hearing stories about people getting into debt being on UC. 

    As for the money they had been wrongly deducting it’s despicable they can do this, if I hadn’t realized and sent them my bank statement as proof I didn’t receive the £561 payment they would have continued deducting until they had taken it all! Surely there must be rules about this, when they mistakenly paid me a £317.82 payment they informed me before deducting it but this time they didn’t. 

    The mistakes have been continuous and they’re making my life a misery, the system doesn’t work and it should be scrapped. 

    I’ve gone from receiving DLA and SDA in 2017 to being told I’m fit enough for work related activities in 2019, to receive SDA you have to be 80% disabled, I wish I could say I no longer have these disabilities but unfortunately they haven’t changed. How can this be right? 
  • poppy123456poppy123456 Posts: 16,266Community champion Disability Gamechanger
    It sounds like the scheme manager you’ve been speaking to doesn’t really know anything to be honest. 

    I would advise you to ring UC and speak to your case manager. I’m assuming that it’s something to do with your service charges that are not being paid. 

    Also so one thing to bare in mind is that if UC are paying your housing costs directly there will be a delay in sending payment to your landlord but I’m not sure how often it’s sent. UC is also paid in arrears which means your rent could potentially always be in arrears. This is one  of the reasons why a lot of landlords don’t like renting to those claiming benefits. It was always the same when claiming housing benefit. 
  • kaydikaydi Posts: 13Member Listener
    I wrote to my local MP about how long I’d been waiting for the results of my Mandatory reconsideration letter and last week received a call from someone looking into it for me. He said he couldn’t find anything on the computer about it but rang back the next day saying he’d found it, it had been scanned but had then been overlooked instead of being passed to the decision maker! I had received the decision on 30th August, sent my MR letter on 20th September and today I finally got the results - they’ve overturned the decision. So I’ll be put back in the support group and won’t have to do the work activities. What a huge relief. The letter says I’ll be reassessed in 18 months but I’m not gonna think about this, I’m gonna concentrate on trying to undo the damage to my health the last 3 stressful months have caused. 
  • poppy123456poppy123456 Posts: 16,266Community champion Disability Gamechanger
    Great news! The timescale you've been given is just a guide though because you can be re-assessed anytime from 3 months, just so you're aware of that.
  • Adrian_ScopeAdrian_Scope Posts: 5,048Administrator Scope community team
    Fantastic news @kaydi. :smile:
    Senior Online Community Officer
  • Chloe_ScopeChloe_Scope Posts: 6,556Administrator Scope community team
    Amazing news @kaydi!
    Online Community Officer
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