A new income

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My situation is complex. I have autism, arthritis and now have a stoma after colorectal/anal cancer. I am currently claiming PIP which was a nightmare when it changed from DLA to PIP. Was turned down by a company employed by the government but with the help of citizens advise went to a tribunal and won. Now the government are threatening to change the goal posts once again. If I got a part time job the employer wouldn’t like the amount of time it takes to empty my colostomy bag or change it which so far can be unpredictable. Then there’s the problem with autism which affects the way people judge me.  I have a dream of being able to write and earn an income at home by writing books but this is just a pipe dream. I have encountered problems in my life which are impossible to solve. A small one which is frustrating is that I can’t send emails via my gmail directly but can if I use a website. This is a problem I’ve tried to solve in the past but have got nowhere. I anticipate many of these if I tried to get a book published. Some of the problems are difficult to explain. The latest one was an app which when I tried to creat an account won’t allow me to input the numbers of my email in.  I feel there is no help out there. I’d need a team of experts to overcome these problems especially if I wanted to get published.

  • Dear   

    Thank you for your message. My name is Alissa and I am an adviser on the Work Support team.

    I am sorry to hear of your colorectal/anal cancer diagnosis and hope you have been well supported by your medical team and beyond, with your stoma. I can hear there is a lot to navigate when considering employment, income, benefits and fulfilling your dream in writing so I hope to help with guidance in these aspects for you.

    In terms of employment, in case you are not aware, as you have a cancer diagnosis, you are considered to have a disability under the Equality Act 2010. This means an employer should not discriminate against you because of your cancer. This protection is in place during the recruitment process too. An employer is also under a duty to make reasonable adjustments to help you at work. This protection is lifelong and does not depend on an active cancer diagnosis. Autism and Arthritis may likely carry the protection of the Equality Act 2010 too. See the Equality Advisory & Support Service (EASS) for more information.

    Reasonable adjustments at work could be time and space to manage your colostomy bag to enable you to work comfortably and safely. Additional time or a different approach to training when managing the effects and challenges which come with autism. It may be useful to know there is a list of employers that have signed up to the ‘Disability Confident Scheme’.

    If your focus was in seeking work, my colleague Stacey wrote a blog titled ‘Finding a new job during or after cancer’ which may you may find useful.

    Other options could be through recruitment agencies if you know the type of work you are interested in. Gov.uk ‘Looking for work if you’re disabled’.

    Searching for courses and training on-line and advice about qualifications and funding can be found through Gov.uk too regarding ‘Career skills and training’. Citizens Advice may be useful to you again. They have a free ‘Digital Support Helpline’. This may help you overcome the challenges you have experienced with Email’s and apps.

    The National Careers Service in England advise adults on careers, interviews, courses, and funding. They can be contacted by webchat, on the phone or face to face. An appointment can be made for the local service on 0800 100 900.

    I am sorry to hear of the challenges you experienced in claiming PIP and brilliant news that with the help of the Citizens Advice Bureau you got the result you deserved.

    Please know that we have a Welfare Rights Team here on the Support Line and they will always be happy to help and support you with any financial or benefit queries. The team can be reached on 0808 808 00 00 pressing option 1,2 and 2 again. Alternatively they can be contacted here by online chat.

    I hope this has been helpful to you and please do not hesitate to get back in touch with us or any of our teams if you need.

    Best wishes,

     

    Alissa

    Work Support Advisor

    Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email

  • Thank you for your reply. My case is different. I have been writing since 2017. I look at it as more of a hobby than actual work. I have nine rough stories which require lots of editing. I haven’t been to university and my level of English is grade C at O-level. What I have written might be a load of rubbish or it might be what people want. I don’t know. For me to get published there are vast obstacles to overcome. I do not have the communication skills or technical knowledge to overcome these despite having good scientific knowledge. Is this a pipe dream or can I make this a reality? Currently it is an impossibility. In order to get published there are four criteria. You have to be rich, royal, famous or exceptional. Having autism, I don’t know anyone who could help me and am scared of being robbed. I would like nothing more to be able to ring up the DWP and give up my PIP payments but would have to be very sure I’ve got sufficient income from writing to be able to do this.

  • Dear Trillium58,

    Thank you for your message. My name is Rizwana and I work alongside my colleague Alissa as an adviser on the Work Support team.

    I would certainly encourage you to follow your dream, although I understand that things are difficult and,  as you recognise there are vast obstacles to overcome.

    As previously advised I would direct you towards The National Careers Service in England who advise adults on careers, interviews, courses, and funding. They can be contacted by webchat, on the phone or face to face. An appointment can be made for the local service on 0800 100 900.

    You could also ask a Work Coach who is based at the Job Centre for assistance, further information can be found at the following website About Disability Employment Advisors (jobcentreguide.co.uk).

    Have you considered contacting the National Autistic Society to find out if they can help you with your goal?

    I hope this has been helpful to you and please do not hesitate to get back in touch with us or any of our teams if you need.

    Best wishes,

    Rizwana

    Work Support Advisor

  • I’ll tell you what I’m afraid of. Years ago in the 1990s in went back to college for night classes for art. The hope was to be able to do comic strips and perhaps even make some money from that. Although I done some drawing and and done a caricature I felt I was not getting anywhere especially with field of view, contrast and definition. In the end of gave up. The second hair brained scheme was in the naughties was to buy a high pressure, height temperature press to make diamonds. I even went to a career advise centre. After going there I came back with nothing and felt it was a complete waste of time. Incidentally I believe companies such as Pandora produce their own lab produced diamonds. If I somehow was able to overcome the immense obstacles it would have involved purchasing a diamond press from Russia, setting up the equipment in my garage then if successful hiring a factory unit to scale up. The electricity cost of running this equipment would be high and with the current economic climate astronomical.

     At least with writing I can do it on my iPad and it costs nothing. There is the problem of arranging me to visit regularly an established author who will tell me what I’ve done wrong. Then there’s the trust issue. What if this author or someone else steals my ideas or accuses me of stealing theirs? How do I sell my stories? Is it online as an ebook or physically as a book in a bookshop? What software and computer do I need to secure the information and transfer it to a new computer and how? What about publicity? How do I set up a Pseudonym. I have probably said something online many years ago that is politically incorrect now and may have upset a few people only on a few occasions being autistic. If I came successful they could weaponise it against me and try to ruin my reputation.

    I cannot see any way that The National Careers Service or About Disability Employment Advisors and the Autistic society can help me. I used to go to Norwich to the autistic place at Maddermarket. I know what would happen and that would be nothing. I’d leave feeling I haven’t been listened to, dejected and even worst than I’ve felt before.

  • Dear #Trillium58

    Following the advice we have given you about your future career plans, I would just like to add that there appears to be a useful website giving advice to new writers. I hope that this is useful: 

    https://www.writersandartists.co.uk/advice/advice-first-time-writers

    Stacey

    Work Support Adviser

    Remember, you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am – 8pm) or by email.

  • Thank you for that webpage. I will look that over but when I go on FAQ it comes with page not found. This also happens to the questions below. I find things like this happen to me regularly which puts a brake on any progress. What I need is a mentor other words a long established novel writer to guide me, someone with excellent computer skills and some legal knowledge to prevent me being sued because they think I’ve stole their idea or someone steals my idea. I am worried about going to national careers service or disability employment advisors incase my PIP is cut off. Being autistic means I haven’t  got a pool of friends who know people who could help. I don’t like going on but I know how things are. The system is set up against me but not for the privileged like actors, politicians and royalty. I don’t expect privileged treatment but the right help to get me started. I have got nine rough drafts that need a lot of work to look professional. If I could climb over this enormous wall it would be the biggest achievement of my life.

  • Hi Trillium58

    Thank you for your recent update

    It is disappointing that the link to the FAQ on the writers and artists website  page does not work. I note that they provide a telephone number and email address if you would like to submit some questions to them directly. Unfortunately, at Macmillan Cancer Support we are unable to signpost you to a mentor or legal professional to support you further.

    We do have a team of Welfare Rights Advisers here who can advise on any potential impact on your Benefits such as PIP. They are not currently represented on our Ask an Expert page but you can call them on 0808 808 0000 Monday – Friday 8am -8pm and Saturday and Sunday 9am – 5pm .

     Alternatively they can be contacted here by online chat.

    I am sorry that you do not feel that the information we have previously provided will be helpful. I do wish you all the best in your endeavours.

     

    Kind Regards

    Linda

    Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email

  • This all goes to prove what a hopeless situation I’m in and there’s no hope for the future when I’ll contribute to the suicide statistics when the DWP cuts my PIP.

  • God morning  

    I just wanted to leave a note here to let you know that we have just sent you an email with support and information that you mind find helpful.

    Best wishes,
    Dylan

    Macmillan's Online Community Team

  • Thank you for your reply Dylan. I have spoken to an advisor who said don’t do nothing or tell DWP about my recent cancer diagnosis and operation unless it get worst. There’s nothing I can do now but have to wait until I get a nasty letter through the post from them in the next year or two. This is like a kick in the head to me. When the government does this it reminds me when I worked in the met office and was bullied at RAF Wyton. Even the unions turned against me after all those men are members of the union.

    I find I sleep better when I think about suicide. My stoma bag, I keep getting pancaking which is when poo gets under the glue and can get on the bed sheets. I thought I solved the problem with the new convex bags which are raised above the skin but this has started happening again. It causes skin irritation. Seen the stoma nurse last week but there seems to be no end to it and want closure. I regret having surgery now and should have let nature takes its course. At least I’d have a few years of some comfort left before I died.

    The cancer that has been removed was found to be T4b but R0 resection which means they’ve got it all out. A small section of prostrate was removed where the cancer had reached. On Thursday I’m having a cystogram and hopefully the catheter will be removed. If not I’ll have to do it myself. I’ve had urination problem,  bleeding for years and multiple DREs but were never sent for a, coloscopy, mri or Ct scan. It seems each time I get some news the cancer prognoses gets worst. I dread what they’ll find when the radiologist looks at the results.

    The Samaritans, I’ve done that. They can’t do anything to help me. Counselling won’t do nothing. The only thing that would take my mind of all this is what I said earlier. When I’ve been to counselling, job centre or Asperger’s groups I’ve always come back feeling more depressed because nothing had been achieved. The Asperger group in Norwich did help me get DLA which is now PIP.

    I have found that in order to advance myself I’ve always needed someone to speak up for me because I know I’m not listened to despite how hard I try. Because I’m autistic, not privileged or have a big circle of friends doors only slam in my face whereas normal people usually doors open. I want the chance that I’ve always been denied to advance myself not just in writing but having relationships to. If it wasn’t for my parents and sister I’d commit suicide without hesitation.