My son's health and benefits — Scope | Disability forum
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My son's health and benefits

My 25 yr old son has not worked for 3 years due to chronic pain syndrome, fibromyalgia, TMJ, headaches etc. He has been treated at hospital for 3 years and is on waiting list for inpatient pain management programme. He has never claimed benefits and although I am on pension credit I have been keeping him for 3 years. I need advice on what the process is to get started on benefits. What comes first, the GP signing him off, or him going to Universal Credit first (active in our area) and also what benefits would he be entitled to. He is in constant pain every day from morning to night and medication does not help with pain. He is worried that I will get in trouble if the DWP find out I have been keeping him for last 3 years as I a on guaranteed pension but I am running out of savings and can no longer afford to keep us both in food and clothing.Any advice would be gratefully received. Can I get into trouble by maintaining him with money and food etc?


  • iza
    iza Community Co-Production Group Posts: 521 Pioneering
    Hi @Anonbon123

    I will request @BenefitsTrainingCo to help you here to answer your ?
    By the way I can recommended for your son an acupuncture @Royal Hospital for Integrated Medicine in London. Pain management will be key for your son's painful condition. By the way does your son suffer also Trigeminal Neuralgia or Trigeminal Neurophatic Pains?
    Please let me know. 

  • Anonbon123
    Anonbon123 Member Posts: 8 Listener
    Hi Iza
    Thank you for replying and for requesting Benefits TrainingCo to help me. We have spent thousands of pounds £10K+ on acupuncture, osteopaths, chiropractors, tmj experts, dental experts, physiotherapist etc., etc. All with no pain relief results. He has seen TMJ Dept, Rheumatologist, neuro dept, physios at hospital and then just passed down the line to psychiatrist and psychologist. He has not been diagnosed with the two neuro-diseases you mention but has been put on various drugs including Pregabalin (which made pain worse), Amytriptilan, anti inflammatories, muscle relaxants etc. but nothing helps. The problem with benefits is nobody can "see" pain so any assessor, I believe, will determine that he is fit to work even though he cannot focus or concentrate on tasks due to pain and also because of the amount of pain he is in. The hospital have told him he has to come to terms with having debilitating muscle pain and headaches for the rest of his life. He has already contacted Dignitas because he can see no future for himself. He is only 25 years old and is kind and sensitive and this breaks my heart. Why can't someone help him. Sorry to go on but I am suffering alongside him at the moment.
  • iza
    iza Community Co-Production Group Posts: 521 Pioneering
    Hi @Anonbon123, you are very supportive parent to your son.  If I could recommend your son  to observe himself for a bit  in the contest how he is feeling at home, outside.
    There could be different triggers in the environment which cause the pains or increase the strength of pains. 

    I do understand your feelings and your son feelings. Leaving with pain is not easy.  It is extremely hard to leave with pains. 
    I do suffer facial pains myself as I do have damaged trigeminal nerve in the face. I also do understand, that it is hard for you to find understanding in the community as there are people who never suffer any pains at all. 
    Explain your son that it is important to find balance in life, avoid situation which could stress him. When people are stress the muscles are tense and pain increasing as well.
    Relaxation is important here (comedy films helping to increase better mood :)
    Please ask your son to join scope online community and  ask him to chat a bit to people here as well. Perhaps, it will distract him from low feelings. 
    I do understand what it mean to leave with pain to the rest of life as I am leaving  with pains  for the last 5 years and will be leaving to the rest of my life too. 

    Somebody said the life is a gift from GOD so we should respect it.  Your son is very young and has life in from of him so he need to find a way to get strong in mind and help himself to move little steps. 

  • iza
    iza Community Co-Production Group Posts: 521 Pioneering
    Hi @Anonbon123

    Perhaps your son would like to speak to any advisor  by phone with scope member. Scope have a helpline available for people to talk as well.  Helpline phone number  
  • BenefitsTrainingCo
    BenefitsTrainingCo Member Posts: 2,628 Pioneering
    Hi Anonbon123,

    Firstly, you won't get into trouble for financially supporting your son out of your own benefits. In fact, you've saved the DWP a lot of money by doing that so they certainly won't mind. 
    Universal Credit is active in most areas of the country but it depends on whether it is the "live" service or "full" service. If you can tell me what the nearest jobcentre is or leave us your postcode we can find out whether it's live or full service. If it's full service your son will need to claim Universal Credit. If it's live service your son can claim Employment & Support Allowance instead with a doctor's sicknote. Regardless of where you live though your son should also apply for Personal Independence Payment (PIP) and he can start a claim by calling 0800 917 2222. 
    Please come back to us if you require any further advice or clarification and we will be pleased to help.

    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland


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